Archer Senft Updates 2016 - 2017

This page has updates for 2016 and 2017 – For the Latest Update Click Here

We have added a DONATE button to the top this page. Please use that button at the top of this page if you want to make an online donation. We are grateful for the outpouring of support we have received.

Click Here for more info about how the donations are processed to help Archer. If you want to make a donation by check, please make payable to Archer Senft Special Needs Trust and send to Archer at 102 Longwood Road, Baltimore MD 21210. Thank you!

This page is dedicated to the progress and recovery of our 17-year-old son, Archer Senft. On August 5, 2015, Archer broke the C5 vertebra in his neck while swimming in Cape May, NJ. After working the lunch rush in the kitchen as the cook at the Beach Club of Cape May, Archer went down to jump in the ocean and cool off before returning to clean up and get ready for the next day. He dove into a sandbar and suffered the injury. Luckily, Archer was surrounded by capable and caring lifeguards and friends, and he was quickly taken to Atlanticare Regional Medical Center in Atlantic City, NJ.

We’ve created this page to keep friends and family updated. We appreciate your prayers, support and words of hope during this time when it matters most. The road ahead is long, but we will be with Arch every moment of the way. Right now, Archer is paralyzed from the top of the chest on down. The Senfts believe in miracles and the power of your prayers. Please keep praying for Archer to recover; we are storming heaven!

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This picture was taken outside of The Food Market in Hampden, Baltimore on Archer’s birthday in July. Archer loves to cook and bake, so the evening was extra special!

 

 


 

 

 

LATEST UPDATE FROM THE SENFT FAMILY:

June 10, 2017

Archer Senft 

Family & Friends Update

6-9-17 

It’s been and still is a very momentous day. Archer graduated from high school today. 

He was voted by his classmates to give the commencement speech. He delivered it beautifully, but only after giving us all a scare by almost tipping over in his 500 lb wheelchair when he hit a divet on the grassy slope as he rolled down in staggered procession with his classmates. He pitched forward and his body landed on the TBar that he maneuvers to move the chair, causing the chair to race forward. It was a close call, avoided by interception of a faculty member. We continue to require a village. Thank you.

Archer’s message in his speech was Hope. It was beautiful. He got a standing ovation.  The board of trustees also awarded him the Character and Influence award. Another standing ovation, 3 in all, all initiated by the students. Truly memorable. Gosh I was so very proud. Very full. Very grateful. 

Thank you for your prayers and all you have each done to bring Arch and us to this day. 

And take in the sweetness of new chapters. New beginnings. Fr Bruno Lanteri, pray for us. Begin Again. Someday Archer Senft will return to that grassy hill walking.

Sending love 

Amen

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whole fam grad

Archer Art Show

 

Wednesday, May 3, 2017

Archer Senft

Friends & Family Update

SUNDAY, 4-30-17, Month 20

 

We can never hope too much; the one who hopes for everything, obtains everything.

 

Fr. Bruno, Pray for us.

God always listens to our pleas and our whispers.

 

 

I couldn’t help but feel joy and gratitude in every cell of my being as I watched Archer roll across the McDonogh School stage this past Monday.  I watched him lift his right arm and extend his hand, always wrapped carefully in an arm and wrist splint so it’s not floppy and so he can extend it, to shake hands with his School Headmaster. It was beautiful. A simple gesture really, but one that takes great effort for Archer as he still has no feeling, no sensation in his arms or his hands. But a cultural gesture he knows well to do which was graciously received by Mr. Britton. Archer was being inducted into the Cum Laude Society.  It was so beautiful.  Isn’t that awesome?

 

Yes, there was a certain awkwardness, as it was a bit clumsy given that Archer has no means of accepting an award in the usual way, no ability to grasp or hold or even know if an object is touching his body unless he can see it and know from experience before 8-5-15 it’s weight or texture since his brain does not register any signals about any sensations of the body from the shoulders on down as a result of the severance of his spinal cord, but it didn’t matter.  And for Archer, it doesn’t matter.  He lives life as if it just doesn’t matter. Archer maneuvered his powerchair using the T-bar in which his left hand rests, powered also by his left shoulder pushing his hand as if an extension. He stopped his chair in front of his headmaster, and Mr. Britton gently placed the signed parchment certificate on Archer’s legs, his lap, a fine resting spot.  It also didn’t matter that it took a few extra moments for this ritual with a new twist to be completed. The auditorium packed with students and McDonogh parents was hush quiet while Archer stopped the powerchair and then manipulated the T-bar to move his big 500 lb chair on wheels to Mr. Britton’s side to make it easier for his headmaster to drape the yellow gold ribbon and Cum Laude Society pin around Archer’s neck.  We all waited and I think watched as much in curiosity as in amazement. It was a real moment.  He did it. And there it was, the symbol of an academic achievement worn around his neck.

 

How fitting. Ironic, isn’t it? The achievement and all it has taken to catch up, stay current and excel draped gently and lovingly around his neck. His neck. That once shattered neck. I could feel the wet tears rolling down my cheeks as we all clapped at the end and felt so proud. So grateful. So full. How beautiful. He never ceases to amaze us.  Thank you, God. You never cease to be with us and help us.

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But you know what was equally moving to me…. Each upper school student who was also being inducted into Cum Laude Society, each wearing their kaki pants or skirts and their navy blue school blazers with the McDonogh seal, each was also donning another emblem, the small one-inch orange and black button with the words Archer Strong written across.  That is what took my breath away.

 

Almost every student from the past year who was on stage as well as the current students receiving the prestigious and hard-earned academic honor, one by one, walked onto the stage with the Archer Strong button on the lapel of their blazer, boys and girls alike.  I loved each one of those dear young persons so very much in that moment. I thought my chest would burst in gratitude for each of them, that gesture, that love, that solidarity. What amazing young men and women.  After all, it was their day. A day for the spotlight to shine on each of them. They didn’t have to share it in that way, but they did. And you know what, it felt like it only added. It didn’t take anything away; it made for greater celebration of each of them. Aren’t young people amazing? Capable of really extraordinary things. Even little things that mean so very much. Thank you, McDonogh Cum Laude Society students.  It means more than you know. Image may contain: 5 people, people smiling, people standing and suit

 

And as for Archer, well, it’s an inspiring aspect of Archer I must say, his inner drive. His love of learning and of school.  I really never had a chance to write the education chapter, as it was always happening but there was just so much more happening medically.  But in essence, Archer told me within weeks of the fateful dive while in the ICU, using our message board of letters since he could not talk because of the ventilator and oxygen and feeding tubes in his nose and mouth, that he wanted to graduate with his class.  It’s as if he knew something we didn’t know.  I mean, the ICU was telling us in the first days that Archer would be discharged and we should look for a rehab center where he would be rehabbed for 2-4 weeks and he would then come home.  Can you believe that? It’s true. 10 days in ICU and 2-4 weeks of rehab. He was strong and athletic and that is what they thought. And then everything changed after week two in the ICU, and they told us we needed to find a long-term acute care facility, as Archer would never breathe or walk or move on his own. It was that radical of a change. In the insurance scramble and the chaos, I had received a call from a stranger, now I see her as an angel, affiliated with an organization that had been following these very blogs. They had medical knowledge of quadriplegics. I’ll never forget what she said to me. She said, I know you don’t know me. And this is off the record. But you’ve got to get your son the hell out of there. They are not equipped for what has happened to him. They are harming him.

 

It was chilling. She confirmed what I felt, what I knew but did not know.

 

I had already been to Baltimore looking for the local rehab and knew that Archer, who was then 6’1” (now 6’4”) would not fit literally and culturally in a room at KKI where the rooms had two children and a crib.  And our other local choice, Kernan, now the University of Maryland seemed cold and remote for what I thought Archer needed. That led to beginning to look and consider other out of state alternatives. There was the Shepherd Center. You know the rest of the story of the scramble of calls to the Chief doctor there at the Shepherd Center and the flight and the Blue Angels pilots and the crazy delay and well…we were on a flight to Shepherd in about 48 or so hours.  The education part of that is that as I had been looking at facilities in Baltimore, one of the top things on my list was Archer’s schooling. I was so naïve in so many ways, not knowing what I know now. In my mind, it was then mid to third week in August, McDonogh was starting classes in less than a week and half, he had already missed soccer tryouts and varsity placements, and I had one day in Baltimore to tour and figure it out.  That is honestly what was on my mind. We will continue our lives as if regular, just living in a hospital or wherever we would be for the rehab for a couple weeks or so.  School.  I needed to assure they had school. Archer said he wanted to gradate with his class, which meant that Archer could not lose any time from school.

 

Well, KKI told me they had someone on staff who was an education liaison and they would ensure he got the schooling he needed. Kernan was more honest in saying they didn’t do school, they did rehab.  Shepherd assured me they had had other athletes graduate and that they would help transition him back to his school after he left there. I felt assured and confident that we would figure it out. I quickly learned that none of these facilities dealing with acute rehab is equipped to teach or provide teaching while in-patient. And it’s totally understandable. Rehab is the priority for them. And really, rehab is the priority of the injured athlete. I understand that as I look back.  But even if Archer had not been complicated, he would still have wanted both, to devote time to rehab and to his education. That’s just how we are.

 

But the truth of it all is that Archer was just very complicated. His recovery was complicated, and honestly, his intellectual ability was complicated as it was near impossible to find teacher matches for him if the goal was to graduate a/k/a staying on course with the classes he would have otherwise been taking which were all AP’s and high level math. It’s surprising how few teachers there are who can teach those subjects, and they certainly are not in the home and hospital pool by and large.  I guess our situation was unusual. I don’t think it would be unusual for many of you though if it had been your son or daughter.  Anyway, no need to dance on the head of that pin about it, Archer wanted to graduate with his class.

 

I will tell you more about all that background later. It is interesting and I tell you, it was like a suspense film week to week figuring it out.  5 School systems we relied on. Yep.

 

On that subject of his being complicated, do you know what else just happened? I have so much to tell you!  Last week The Christopher Reeve Foundation contacted us and asked if they could write a letter of recommendation on Archer’s behalf when they heard he was making application for a scholarship from the Swim with Mike Foundation (wonderful group at Unit of Southern California) to help pay for college.  It was very generous of them to send the copy. It was extremely generous of them to Can you believe that.  They sent a copy of the recommendation letter today. Oh my. I was blown away when in the letter they said that of all the quadriplegics they have counseled and assisted, they have never seen a person with injuries as complicated as Archer’s and that he is the first they have written a recommendation for. Never in their history they said.  Isn’t that remarkable? Never.

 

So, I guess he was complicated.  I mean, I knew he was complicated. But I had no idea it was anything different than any other catastrophic injury like quadriplegia.  They had called last week for an interview with Archer. When they said he was more complicated than any they had seen, it brought a flash of memory not so much of horror, but more like, well, sort of distant, a memory, just that, a memory, still there but not really sharp. It was more a Wow. And I am deeply grateful for those parts that are behind us, a new beginning.  Actually, I felt a deep respect for Archer.  I had almost forgotten the quantity of setbacks. They noted how Archer had not sustained just a fractured C5 neck which required delicate neck stabilization surgery but a shattered C2-C5 neck which required a complete reconstruction of the bone before it could then be stabilized with pins.  Ah yes that dive, that crack, that shatter that changed our lives and most importantly his life in a split second.  That I will never forget.  The ICU protocol of neck stabilization surgery, feeding tube, and as needed ventilator, as well as full body weight shifts and the shock and adjustment to being paralyzed is horrific for any quadriplegic. And their families.  And I have come to love a number of those families I have met along the recovery journey.  And I have begun to counsel those who have come and reached out and it really is a wealth of how to’s I guess you could say, of course unique to each injury but many across the board learnings I hope can help others.

 

But they stated that they had never known of a quadriplegic injury as medically complicated as Archer’s and that is really what gave me pause. This venerable Foundation saying that.  It’s not to say look at him, it’s worse than others. That’s not it at all. It’s more to say, It was that bad, see what is possible.

 

Yes, what is possible. Oh just breathe that in.  The plane of possibility.  Sure, the degree of impact and the lungs filling with ocean water added grave additional factors, but it’s so uplifting to think of what is possible.  Nonetheless, their statement was sobering and included and reminded me that Archer had had 9 surgeries in 30 days, endured medical errors that were costly to his recovery such as placing blood pressure medicine in the saline drip bag, suffered 3 heart attacks, one resulting in 6 male medical workers having to beat his chest and back as he flat-lined for 6 minutes, required a subsequent pace maker implanted when he was only 17 years old, survived collapsed lungs on multiple occasions, bore a grueling searing pleuredesis procedure, endured the excruciating pain of a body trying to regulate itself while his entire body had to be rotated up onto his side every few hours 24-7 to drain his lungs and prevent pneumonia from settling into his lungs, endure three large chest tubes (inserted directly into the lungs and attached to containers we could see bedside) to drain fluid, experience his hands and feet curling in muscle atrophy because of the delay in physical therapy, live through his body being iced and de-iced in response to wild swings of high blood pressure, not lose hope at an alarmingly chronic low heart beat, endure constant deep lung suctioning (inserting long suction tubing through the hole in his neck snaking down into his tissue) 24-7 for six months, put up with machines needed for other machines when the use of an inexufflator was used to support the ventilator machine which was to used to support Archer’s breathing, but his body was not able to breathe on its own even with the ventilator support and additional boost because of the extensive nerve damage not providing enough enervation for his diaphragm, endured prolonged use of the ventilator and chronic lung desaturations and arrests in breathing requiring bursts of oxygen and other lung devices, and kept faith even when blebs appeared in his lung tissue and the machines were discontinued. Complicated. It was all true.

 

Archer, you’ve come a long way.  Yes, you have had determination and grit. You asked God to give you life, and He did.

 

And all of you, with your prayers created the energy field for what is happening now.  I am just so very very thankful.  Thank you.

 

OK, so…. get this.  The night of the Cum Laude event, last Monday, we had a telephone conference with a team of doctors in California. Remember about a week or so ago that news report about the experimental stem cell injections for a quadriplegic man? Well, I emailed that doctor so fast since it looked as if Archer might be a good candidate based on the article.  You just won’t believe it.

 

Remember last summer when we were angsting about when we could get that pace maker removed? We knew it was an unusual surgery, that is, to actually remove a pace maker, but we knew it was getting more and more risky the longer we waited.  So, last June, a wonderful surgeon at Johns Hopkins successfully removed it and all 42 feet of leads around Archer’s ventricles. We had said then, Archer, we need to get everything we can out of your body to be prepared for what might come your way in future medical surgeries and advances.  I meant it.

 

I’ve felt that way too about some surgeries related to his bowel and urethra too that might be worthwhile but could change the internal workings in such a way that IF he walks someday, might interfere. And, I do believe Archer will walk someday. Oh, I think I’ll send you a little clip of one of our more recent PT sessions. It’s of Archer on the GEO. The neatest device. Housed in a room to itself.  Archer has been building stamina for a year now to be able to get on to the GEO and stay and remain upright without any heart or Blood Pressure or Autonomic Dysreflexia issues. Pretty neat isn’t it?  I just love to watch it move Archer’s feet and legs. He does too.

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There is a mirror in the GEO room in which he can watch himself. I am sure that mirror neurons are sending messages to his brain, Remember walking? Yes! It is so wonderful.  For every step you take today or tomorrow, or really just a mindful moment of one step, feel the love and freedom in that step and what it means. A machine like the GEO simulating what his body knows how to do already, maybe it will not only strengthen, but maybe it will wake it up.  I learned from my eye healer that dead cells in my macula can be awakened. So too I think can Archer’s.  Here’s another picture of where I was waking up the cones of my non-dominant eye, the one with the most macular degeneration.

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Horizon gazing for me. GEO body-moving gazing for Archer.

 

All this intellectual capital is God given. Part of the Creative Miracle.

Back to the news report.  A friend sent me the email address I needed to try and reach the researchers.  I quickly jotted off my email to them. I gave them a brief overview of Archer’s condition and profile. Well, do you know that the next day I heard back. Seriously.  I did.

 

So, that was last Friday and we set up a conference this past Monday.  At the end of the questionnaire, they told us that Archer had passed the first screening!

 

This is what they were looking for: the perfect profile. You won’t believe it.

C5. Check.

ASIA A Complete. Check.

At least 18 years of age, the younger the better. Check.

No bedsores or open pressure wounds. Check.

No hardware in the body other than the rods in the neck. Check.

At least 1 year post injury but not more than 2 years. Check.

Oh my goodness. Can you believe that? It’s unbelievable.  Archer is exactly in the window of time.

 

We are waiting to see if he will pass the second screening as they review the medical records I had sent mid week.  The only thing that might give us trouble is they are looking for a C5 injury. Archer as you know is very “high injury” as they say, meaning high on the C spine, a/k/a not good, as a C2-C5 burst, but technically he is a C5 as that is where they placed his rods after they reconstructed his neck from the donor (thank you again, dear donor, you donated your hip bone and Archer is the beneficiary).

Quadriplegia. Each quad is so different. The difference between a C5 and C7 is a world. A whole oceans’ worth.

 

We remain so very hopeful.  If he passes, it’s on to the third screening where we will take him to San Diego. Oh right, I forgot one of the screening questions:

Ability to come to San Diego and be available for follow up, up to 4 months. Ahhhh….Check.

We will just have to figure it out.

 

The two day assessment will be later this month and include MRI, CT, physical assessments and such.  If that is successful still showing he is a good match for the experiment….well, then the procedure needs to happen within 30 days and we need for it to happen as soon as possible to fulfill the time afterwards given that Archer is to start UPenn the end of August.  I had tried to see if he could come to the dorms early but that effort might not be necessary on UPenn’s part or ours if we were in San Diego or back and forth.  We may need help with frequent flier miles and so forth.  We would plan to go for the surgery as soon as Archer graduates in June.

We will figure it out.

We will.

If we have to move to San Diego for the summer, or go back and forth, we will. Whatever it takes.

Please please pray that he is selected as the next human subject.

 

If selected, it would mean the potential for him to regain his triceps, so he would have the muscle in the back of his arm to move his elbow, which would make Archer very very happy.  It could also mean a restoration of the sensation in his arms below the elbow to his wrists, which could mean he might be able to grasp items between his two wrists because he could feel them rather than just meet such items now with stiff extension arms and droopy hands.  Imagine, his holding a cup with his wrists because he could gauge the surface and the weight.  A game changer. Maybe he could even feed himself a sandwich, or be able to brush the hair out of his eyes, or itch the side of his neck, or adjust his baseball hat. Or maybe even operate a toothbrush. Or help a caregiver thread his arms through his shirt. A game changer…. Or give a hug and feel the warmth of the other person. A true game changer.

 

Oh dear Mother Mary, please wrap your arms around us and guide the doctors and guide us.  We await news soon.

 

If you would be so willing, could we all pause a moment now and together think about the possibility of this happening.  Close your eyes and see yourself using your arms and wrists for something, anything.  Delight in the use, the ease, how often you need them all day long.  And then imagine Archer using his arms and wrists. Breathe in the goodness of your own use of arms and wrists.  Hold the image of Archer having the use of his triceps and wrists and whisper your favorite prayer. Any will do.  Heavenly Father, pray for us.  Hail Mary, full of grace, receive our prayers. Jesus, forgive us our trespasses and restore us. Fr. Bruno Lanteri, please intercede for us as we ask for mercy.

 

We will accept whatever the outcome is.

It is so sweet to imagine what might be possible.

 

And, it’s as if a door opened that we hadn’t anticipated at least at this moment. But God’s time is God’s time. You just never know.

 

It’s a crazy thing because I leave this week to go on a trip to Lourdes, France.  Lourdes. The place of healing.  Yes, travelling with the Order of Malta, taking about 30 malades, those who are sick, ill and dying for healing, to the very place in the mountains where the Mother of Jesus, the Virgin Mary, appeared to a little poor girl Bernadette over 150 years ago and gave her many messages. No one in power much believed her but the peoples did one by one.  And they came. And there were miracles. Including the queen of France bringing her club footed baby. The messages were to pray, to fast and to process in numbers to the place of holiness for healing.  So many people from around the world have been healed, Christians and non-Christians. All who go leave better. There is a sense of self in unity with God and with God through others. That is what happens there.  And a great deal of laughter and conversation and quiet prayer.

 

So, you might be assuming that Archer is going with me. What more wonderful trip could there be, after all.  Well, I wish he were but he is not.  The trip began with my seeking his acceptance to go last October. We tried to figure it out, but there were so many obstacles mainly medical and physical related to related to such lengthy travel, difficulty of weight shifts, what if a bed sore that would scuttle the entire experience for him and takes months to heal, etc.  But back then it was also Archer’s not being able to tolerate being hand lifted out of his chair without great pain.  Again, another real marker in his progress as Billy and a few other strong men lifted him last month when they took him on a Spring Break trip with his lacrosse team to North Carolina.  They did just fine.  It seems that all the many hours of physical therapy and time have helped with further healing and strengthening without a doubt.  But the answer was still, No for the trip to Lourdes, at least for now.  Being that it was May and Archer has his Senior Thesis and then will have his Senior Project, he was Ok with my not putting energy into figuring out a way.  Then the most remarkable thing happened.

 

In January the members of the Order of Malta, most of whom are doctors and such, were conducting the physical screening of other potential candidates for trip to Lourdes, the one this week. There were many malades who had been recommended and they were each being interviewed and assessed that particular weekend at Mercy Hospital in Baltimore.  Billy and I were at our house that Saturday in the middle of a meeting with a woman re college financial aid when I felt this really strong pull to go downtown to the Lourdes screening. I mean it was literally as if I had to get there.  I excused myself, put on my coat and drove down. It was not quite 2pm. The screening had been going on all-day and ended at 4pm.  It had been on my calendar.

 

No sooner had I arrived on that cold Saturday at Mercy Hospital, it was weird because there was a parking space right in front of the hospital, and I felt the need to run in and hurry which I did. When I arrived passing through the security and up onto the elevator, I slipped into a coatroom, hung up my coat, and stepped out into the hallway. Whom should I lay eyes on rolling through the entranceway but the boy/young man who had been Archer’s roommate when we first arrived at KKI in-patient.  I couldn’t believe my eyes.  It was G.  He was brain damaged and partially paralyzed in his legs from a heart attack he had while running a marathon, now age 19, and medical help was not able to get to him for 15 minutes.  We were very fond of each other when we met. He and Archer both sweet and kind.  Very compatible. But, both also being over 6 feet tall, the nice roommate situation did not last long as they separated us after about a week since the KKI hospital room literally did not have enough room for two extra long beds. Archer was sleeping with his legs handing off the bed and poking out from under a curtain and there was no room for a nurse to get near a bed if she had to once I unfolded a chair near alongside archer’s bed. Yes, tight quarters.

 

G had lost his ability to speak, but would let out piercing loud squeals when he was excited about something. His screaming, if you will, was the last memory I had as he was discharged and sent to another facility.  I recall his prognosis was that his speech and eyesight might slowly be restored and I felt hopeful for him.  Well, there he was crossing the threshold of the screening suite.  I would recognize him anywhere.  I was thrilled to see him and totally surprised. I said, G! is that you, G K?

What do you think this beautiful young man did?

He opened his big arms wide and threw back his head and his sweet face and mouth opened wide to exclaim in very labored speech HOWWWWW’s ARRRRRRCHHHHER?

Isn’t that simply remarkable?  I was so bowled over I almost fell over but instead fell into that big embrace of his. I knew why I had to get there to see the screening. I was meant to go to Lourdes with G.

 

His mother is one of the sweetest ladies, like an angel, you’d ever meet.  I was so happy to see her too. We hugged and I pulled her aside and told her all the things she needed to do to demonstrate that G could be accommodated.   I told her quickly the barriers and specifically what to demonstrate. I could feel the unity like two schoolgirls hatching a good plan to do something together. I assured her, G will be accepted. I know he will.  And I will go with you to care for him.

 

And that is what happened. Well, not exactly right away but it did happen. The chief doctor who had delivered to me the disappointing news about Archer and I were friends and I did understand the whys.  Anyway he called me later that night at home.

Louise, did you talk to G’s mother?… I know you did.

Yep.

Well, that woman came in with her son like a drill sergeant.  She had her son showing us things he could do like hold a stance on his own while holding the back of a chair, moving on his own in a chair, telling me he didn’t have to be in a wheel chair for everything but could tolerate a regular chair for periods of time. ..

He continued, I mean, she wasted no time. What in the world did you tell her?

I smiled over the phone lines, Oh you know all the usual stuff that prevented Archer from going. And, Dr. H, you must take him.  His mother and I will have enough experience to train others there. It will not be too much of a risk. We can do it. Please accept him.

 

Well, they did.

And that is why I am going to Lourdes. I will care for him with his mother as if he were my own son.  What a privilege it will be.

 

If you don’t know about Lourdes, Google it. An amazing place. For any of you who might have special prayer requests, please send them to me. Go to the www. BeingRelational.com website and click Interested in Learning More. Please write LOURDES or PRAYER REQUEST in the subject line, and I will collect them and take them with me to lay at the feet the beautiful replica statue of our Lady of Lourdes, a reenactment of the apparitions with Mother Mary and a young peasant girl as the prayers of people from around the world are heard in unison as we gather together and process to this holy place.  If your prayer request is confidential, just write Confidential Prayer Request in the Subject line and I will copy it but not read it. Promise.

 

I am so looking forward to going.  I will also do some reconnaissance so that someday Billy and I might take Archer and perhaps even the rest of our family, or whoever can go.  Dutch said he wishes he were going with me and that so touched my heart.

 

Oh my gosh, Dutch! I must tell you about Dutch. Remember I told you he was in his school play, Shrek the Musical. And that he was SHREK! Who would have guessed it. From the time of tryouts to now he too has grown more and more and he is now, as an 8th grader, 6’ 1” feet tall!   The play was a hoot, and I laughed and smiled so much my face hurt. I went to every single showing, all 5, and sat in the front rows every time. I was so proud of Dutch. We took out an ad in the school play program and said, Go, Onion Boy!  You’ve got layers! We love you.

Get it…layers. Ogres have layers. Smile.

I am so grateful to his directors for spotting a little diamond in the rough. He will forever be shiny on the inside as a result.  He loved that play. He never once talked about it until all the performances, and then he wouldn’t stop.  I helped with the makeup and it was so much fun.  He looks back and talked about the rehearsals and the fun they had and what it feels like to have everything so nothing and then have everything come together. He said it was a like a long sports tournament but with a lot more diversity and that it was really fun.  He’s such a great kid. Here are a few pics of Shrek.

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And, he did sing! Quite a number of songs. I love his facial expressions! Aren’t we lucky to have children. He will be 15 soon so hard to believe.

 

Oh while I’m playing a little catch-up and we’re into Broadway, yes, Archer and Billy did go to see Stephen Colbert on his show a few weeks ago. Another hoot. They said it was a riot. And Stephen was so kind to them after the show. He also knows one of Archer’s favorite artists Shep Fairy which was realized when Archer spied one of his posters in the back room.  I’ll attach a pic.

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I have so much to tell you about UPenn too. I’ll save most for another update but I do want to report that it has paid off to essentially go up to Philadelphia weekly or every other week since the end of January. We are making progress. Here is a truth. If you have hard work to do with someone, it just can’t get done without face-to-face dialogue.  That’s it. It really cannot.

And re Archer moving to college, there is soooo much to do ahead of time and so many doors and emails that may never have been opened but for going and physically, sometimes if only a few minutes, but nevertheless establishing connections. I see my job for Archer as removing the obstacles that he shouldn’t be expected to have to do at age 18 or as a paralyzed young person when his energies are on finishing school and all that goes along with that.  So my job is to clear the path he already cut when he applied and was accepted. If I can help pave the way, he can do all the rest.

 

But it’s a lot, like finding at UPenn Medicine the 18-22 medical specialists who can be consulted when needed.  Like figuring out PT and OT when the facility is a few miles away. Like figuring out the location of the dorm room where and what and how big and accessibility given that all doors are card swiped, and figuring out tuition and cost of nursing care and what the days should be like. After all, Archer needs help 24-7 and during the day, opening doors, holding doors, taking his hoodies on and off, charging his phone and ipad, putting food on a plate or tray, giving his credit card or meal plan card to a cashier, being fed, having his Camel back water pack refilled, emptying his cath bag, getting the hair out of his face if windblown, putting his foot back on the foot plates of his chair if one falls off the plate, letting him know if there are people behind him when he turns in his chair, etc.  Basically being his hands and his eyes when he can’t turn his body to see.  And yet, how debilitating that could be to have someone with him all day long, who did these things, but also it seems would be a barrier to his making friends and having to rely on the good will of others.  Interactions with others and college friendships are as important as the academics and quality of teaching it seems to us.  So, it’s as if we need a somebody in close proximity but who is invisible until Archer needs him or her. We will have to work on that.

 

We are actively seeking night nurses, two full time nurses who can care for Archer.  We will be there probably the first few months to insure a smooth transition and no trips to the emergency room. Hopefully the seven months it took us to find good care at home will be shortened as we have learned too. But already we have found obstacles such as the cost is higher for a nurse in PA than in MD, and HHA’s or CNA’s in PA are not licensed to do certain activities and bowel programs are one. So, we have a lot to figure out.  We have Archer’s body well cared for now and we hope to keep that trend going. One mess up or one day of a caregiver who is not thorough and not caring could spell real trouble for Archer. We want to avoid that like the plague.  So, we will continue to work on the system and safety net and emergency plans so we can exit and Archer can do his thing.

 

We are making progress.  Last Thursday we finally nailed down in what dorm he will be placed and that he will have a double with room for a caregiver all night.  He will have a ceiling Hoyer lift due to his height and program needs. We angled for the two newest dorms where the technology is new and the possibilities thus expand for Archer to work with an UPenn physician who has suggested that they work together to figure out some new things and he told Archer that he might graduate with a couple patents.  Archer smiled gently and nodded humbly.  But a dorm that has Freshmen in it, lots, was key to us too.  And also being in close proximity to the School of Engineering was very important.  We didn’t want to be demanding nor did I want a situation where we were adding things. I took a very open approach telling them a few times about Archer, his needs, how it rolls and then the list of factors we would be looking for and asking to be included in the decision-making, assuring them that would be better for all.   We were not included and I don’t think fully heard in the beginning but we are now and it’s all very good. And it’s not that it was every hostile or closed, it was just unusual for them to be collaborating in this way they said. But I think it is better. We are closer.  So, the dorm agreed upon includes those things. And we are grateful.  We really did explore a number of dorms, but either facilities or disabilities had concerns or I had concerns.

What we alighted on were two potential dorms. They chose and we happily consented. All good.  Being close to the Engineering school will limit his not having to miss classes related to rain and snow. I took him after a snowstorm in March and there were a few streets that were difficult to cross given UPenn are in the middle of Philadelphia. The curb cuts were still icy in some places but the most typical scenario was that the snow for walkers had been plowed and dumped in the curb cut, the only place someone in a wheelchair can go to get up onto a sidewalk.  So he was not able to even get onto a sidewalk for some blocks. We managed but it meant my walking in front of Archer in the city street as I extended my arm in front of me to oncoming traffic to stop or make room for the traveler I had behind me. It was probably quite comical. Like an old-fashioned traffic cop kind of scene with the little kids passing while the cop held back traffic with his hand.  There we were.

 

There’s no invention (yet) for an umbrella for a powerchair or a plastic wrapping of sorts, but when there is, it will be useful.  And because Archer’s hands have no sensation nor do they have nerve endings to help move them, it’s nearly impossible to get gloves on him, so his hands can get very cold, and he doesn’t even know it. You might think, Well, so what. Well, the crazy thing about quadriplegia is that the brain doesn’t register the discomfort, but the body does and that is when Autonomic Dysreflexia sets in, so…. Better to be close to the Engineering School.  For those of you who might be thinking mittens, we tried them too, as they were definitely easier to thread on, but he was not able to maneuver the chair and the T-bar since he could not tell whether he was on the bar or not through the thickness of the knit.  So many little things. So…. After a lot of calls and talking with Security and the Police and Facilities and Disabilities, we have a decision. Yeah!  The most wonderful part is that everyone now understands so much more and the decision was arrived at after a lot of really good process.  It just takes time and a lot of follow up and educating about a situation.  And, we are always learning too, so the educating goes both ways.

I’ll tell you more about our medical collaboration in another post.  And the meeting with Disabilities too. Both very interesting.

 

Oh, Archer has been asked to have an art show, more about that in a later entry. Oh Actually so much to tell you about art. But later.

 

By the way, happy late Passover, and late Easter and Happy Spring! Here’s a pic of all of us together for Easter Sunday. How I love it when we are all together.

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I want to sign off with joy in my heart and asking you to please pray for our trip to Lourdes and for the young man I will accompany, and for Archer that he will be chosen as the right match for the stem cell therapy, and for other injured young adults and their families who have reached out to me in the last six months or so for assistance. There is so very much to do, and when each of us offers even just a little bit, it makes the world better. Everything will get done. All in God’s time. The laborers have much work to do in the fields.

 

We create energy fields for healing and hope and truth of what is possible.  It’s about believing. In possibilities. They are real.  I’m sure you have something on your mind right now that might be troubling you. Lay your troubles down with a few deep breaths and a prayer that you can rest in God’s presence and forgiveness and love. And I will take your prayer with me if you would like to Lourdes. And in the interim, advocate when necessary, pray always.

 

Send me your Petitions if you would like.

As Fr. Bruno said, We can never hope too much; the one who hopes for everything, obtains everything.

 

Begin again, and again. Get up and begin again. Wake up and begin again.

 

Amen

 

Sending love

 

 


 

 

Wednesday, March 15, 2017

Archer Senft

Friends and Family Update

Wednesday 3-15-17, Month 7, Year 2

 

Hello dear ones. It’s been a long time since I’ve updated you. Happy New Year. Can you believe it, already well into a new year and half way into year two for us on this journey with Archer and his quadriplegia. And it’s also year two for us with you, as I know we have been on this journey together. We never forget that. Thank you so much.  Here is a snap shot of where we are today.

 

We are in the beginning of seeing the fruits of a beginning collaboration at UPenn. Last fall, Archer was admitted Early Decision into the School of Engineering at the University of Pennsylvania as part of the class of 2021. He will begin in August and we have every intention that he live on campus as a regular student. It seems to be a very good feeling for him. Like a quiet confidence I’d say. Stepping back to look at the big picture, it’s a big deal that he is even graduating from high school on time.  We can thank another unlikely collaboration we created between Baltimore City Public Schools, Home Schools, On-Line Schools, and our dear McDonogh School for all of that. They put up with me pushing and asking and hoping, and with Archer’s determination, and their care and McDonogh’s love, he is totally on track and now into UPenn. He surprised us with his decision to apply Early Decision as he is interested, at least for now, in a specific program that is not offered many places: a dual degree in Engineering and Fine Arts/Film/Animation/Design.  Two other schools with the program, Cornell and MIT are too far north for Archer’s quadriplegia to tolerate as his particular injury doesn’t allow his body to acclimate easily to changes in temperature, especially cold temperatures, and ice and snow make it hard to get out in his powerchair where he can maneuever it and still be able to communiate if needed on an ipad/phone which he can access by voice but not if it’s cold and or raining/snowing.  He also looked at and thought long and hard about Georgia Tech for it’s excellent engineering and climate, and at USC in Los Angeles for its excellent engineering and film and it’s climate, and at UCLA but we saw with a visit Bill made on Archer’s behalf that the terrain of of the school was too hilly and too many steps.  Funny, what goes into a decision re application.  So, Archer said he really liked the vibe of Philly and the campus was easy to navigate and it was close enough to home that if any emergency arose, he knew we could be there in a couple hours, and even stay with him the first couple or so months while going back and forth. So, that is where our focus has been partly now that it is decided where he will go. He’s really amazing and thought long and hard about these things. Yes, he remains a top AP student, gifted in math and physics and yes, he had amazing scores on his SAT and yes, he also submitted an art portfolio of his digital work and yes, he’s been working tirelessly on school work with his “one finger” as he calls it, this metal stylus which we carefully attach every morning to a Velcro hand and wrist splint and then wrap both around his arm which he then powers, literally, by moving his bicep and shoulder. Man o man, can he move quickly with that stylus on an ipad and an iphone.

He stays up until 1am on many if not most school nights which concerns us on one hand and which we also admire on the other as he is driven to move forward and learn and do well in life despite the injury. Because his nightly and morning routines each take about 90 minutes now that we have things smoothly running and know what his body needs and how to care for him, it means he is going to bed very late and we need to awaken him early in the morning again. It was a 3am weight shift for many months followed by a 5:45am wake up. We’ve all gotten better as his programs and now it’s a 3:30am weight shift and he can sleep until 6:15am. But that doesn’t leave much down time for him.  This summer will be needed rest for him. He says he doesn’t want to waste any time and he needs all that he can get.

 

But what it means to go to college is…well, Archer wants to be like any one else who had always planned to go away for college. He wants to live in a dorm and be a regular student. So that is what I am working on.  It sounds simple but oh boy what it entails.  We are feeling very good about his choice and are searching and networking to those in places of power and influence there. We knew absolutely no one at UPenn before Archer’s acceptance, I know feel I have some real champions and open minded people who are willing to help us chart a good solid course of care for his needs.  I’ll let you know more about that as it unfolds. Yesterday was a groundbreaking day. Financial Aid let us know earlier that Archer is the first quadriplegic who has no function below his biceps to attend Penn, and they thought he might be the first with these limitations to attend an Ivy League. That just told me that we have a lot of educating to do, so that is what I began. No 18 year old should be required to navigate the adult academia world on issues unrelated to academics. I have met with some closeminded thinkers and I have met with some amazing people who were not only creative thinkers, but I could tell they were believers. Believers in what I shared was our Creative Miracle unfolding and UPenn was the next chapter. So, amongst many many things, we are having to rethink how Archer even has access to buildings, not re ramps and elevators, which are key and necessary, but to outside doors. All the entry ways on UPenn campus, embedded in the heart of Philadelphia city, are security locked, openned with a card swipe. Hmm. Archer can’t grasp anything as you know. Or hold anything in his arms. Well, great minds will figure it out. You might be one of those great minds. If you have any ideas for us, please pass them along.

 

I feel pretty good about where we are now at UPenn for Archer, their decision to accept him and his decision to say I do, and the team we are building there for his care.  And I am so grateful.  But initially, the road was not so easy. When he visited last summer and fall, one person in the Engineering School expressed doubt that Archer could be fast enough to code on a computer given he had use of only “one finger”. This was similar to Billy’s and my beloved alma mater, University of Virginia, who told Archer on a visit last summer that they couldn’t see 1. Archer being able to combine majors, Architecture design with Engineering, and 2. Archer even making it past the first two years of Architecture School since he couldn’t free hand. Well, Archer was not daunted; it may have made him more determined actually but in his very pragmatic way, he is soooooo even tempered, he said he would look elsewhere for a program already combined and that is how he found UPenn. And, I honestly believe that with technology and Archer’s countless hours put in on digital art these days, he will be close to free handing soon as he is on fire with his art designs. More about that in another post. Sorry I am rambling, there is so much to tell you and I’m just wanting to hit some highlights. But back to UPenn, during a September visit while Archer was talking with a grad student, I was waiting to say hello to someone in admissions as we had met no one in the administration channels at that point. You won’t believe what happened. I hesitate to share it with you as it is not flattering to UPenn but… it’s worth sharing because of an issue I want to explore more on disability and humanity, perception and assumptions.

 

As I sat in the chair outside a row of large lovely doors to updated beautiful offices, the time passed slowly. I waited and waited. There were no other people occupying the other chairs in waiting. All the doors were closed. It was very quiet. I was texting Bill that I was still waiting, when I was told by a lovely receptionist that I could be seen.  I did not feel like Dorothy waiting to see Oz or anything like that; it was just an informal meeting as I had been sent to see her by another dean’s receptionist whom we stopped by to see re other recommendations of those to see or talk with in the Engineering School while we were there as that is what we had been told to do given if we had any time left in our trip, but that dean was out of his office. His staff couldn’t have been nicer in sending us to this other dean person to meet. I asked if we needed an appointment and the receptionist said no, just tell the other deans receptionist and you can stop in to get your question answered. So, I was patient and looking forward to an easy, Hi, we are … and our son is looking at UPenn and if there is any person whom he should meet with before applying… that kind of thing.  Instead, I got more than a bucket of cold water thrown in my face, as the saying goes.

 

Me: (extending my hand to shake) Hello, ___. Thank you for seeing me! I just wanted to stop in and say hello, I’m sure you are busy, I’m the mom of a boy applying who is a quadriplegic and in the school now talking with ….

Admin:  (withdrawing her hand) We won’t dilute our quality and our curriculum for anyone.

 

I was stunned. I honestly had not even said more than Hello.  Those were the very first words she said to me, Not even a Hello Mrs. Senft, or It’s nice to meet you, or Thank you for visiting our school. Nothing.

I was really really thrown off my center. We chatted every so briefly, I, in the be- polite-while-stunned-having-just-been-zapped-by-the-mosquito-killer mode, trying to shake the stupor, and collect my thoughts to what she just said, and she ready to walk me out the door.  It was truly stunning. In that probably 2-3 minutes maximum interaction, I finally found my authentic voice as she was ushering me out, with one of her, I-have-others-I-need-to-see dismissal.

I said, Thank you for your time. (extending my hand again to shake) I really just wanted to stop by to ask your advice on whom our son might see or talk with while he is here as we were recommended to come back today and were recommended to you. But, I now I really just want to let you know something more important. Our son would not be interested in looking at or attending a school that would dilute the quality of it’s curricula.

 

And that was that.  I figured they were not too interested in Archer and it would be their loss. Of course, that was just the mom in me consoling myself from that harsh encounter. But the more I thought about it, the more compassion I had for her. For her, a woman, I know, it’s disappointing. At least to me on many levels. But now that Archer is attending UPenn, I honestly think I’ll find her and perhaps we will even be friendly as I want to revisit that with her. Surely she must have had some prior baggage, past dealings that were not pleasant for her regarding families of disabled student applicants. Who knows. But I am willing to give her the benefit of the doubt. I intended to write her but did not want to jeopardize Archer’s application process that he was doing on his own. But no doubt she made a blink judgment, likely informed by her past negative experience, a wound unattended, a fear, and in a flash she attached that in a nano-second to a word I said, quadriplegic, and boom, I was swatted away by her. She was armored up without knowing anything about us.

 

So, those are some experiences we will just have to take and live with. Hey, I get personal reactivity to things too for the same reasons no doubt, but just different material as I might call it.  It is human. But I am particularly sensitized now to the new material related to disability.  I imagine baggage comes in too because there are also many abuses of the system. I have seen that squarely in Baltimore City. I can only imagine what universities and colleges have to deal with. But I think it can be a new day with Archer. Yes, he will need some accommodations, some which are mandated by law, others which are not. But he will need them. And yes, there are other things mandated by law that he will not need and thus not need to request or take advantage of. And he will be in a private institution that also has no obligation to assist with other things that Archer needs for his basic living. So, we shall see. I believe in their generosity and nobility of wanting to do the right thing. After all, having someone like Archer around you I honestly think makes you a better person. He can do absolutely nothing for himself in about 99% of the ways needed for daily living. And yet, what he is cabable of and his spriti to want to be with you and work with you and create with you and for you is very contagious and inspiring.  You too I bet inspire other people when you are dedicated and creative. We all have that capacity.  Let’s take a breath for being dedicated and creative. Taking a deep breath is as good as raising a glass!  A breath for all of you and a breath for Archer, that he will stay sustained regardless of the blink judgments that might shut him out or down, especially those that he might not even know about.

 

 

You know, please say a prayer for us these next few months as we figure out a care plan for Archer in Philadelphia. It’s critical that we do it really well with some very wonderful volunteers and skilled care.

 

Archer called out in the middle of the night the night before last night, hours after we had hunkered down and the blizzard snow had begun to accumulate in Baltimore.  He was profusely sweating and it signaled Autonomic Dysreflexia (AD). His body’s distress level was rising quickly and we needed quick action to root out the cause. His version of quadriplegia is tricky as he has most of his body that he doesn’t feel, yet, his body feels everything. I know, it’s hard to wrap your brain around, and it’s been hard for us too and even other non spinal cord injury trained doctors. So, when you are uncomfortable say lying in bed on your arm, or your back and it begins to hurt, what do you do, you shift your body position. You might shift many times to get comfortable. If that doesn’t work, you might stretch, of you might even take a Tylenol. Archer’s body feels the same discomfort, but his brain doesn’t register it because of the spinal cord injury. So, his body, which doesn’t move, endures it without Archer even having the ability to breathe his way through it until he gets cues when he might be awakened with prickles on his scalp. Not good. That can rocket quickly to high blood pressure if we don’t get to the problem quickly. Since he can’t move, we basically do for his body what he cannot. We have a protocol of 10 point checks Billy calls it. But Arch hasn’t had such an acute episode for a couple months now. Anyway, our nighttime helper we have and rely on so much, swung into action to begin our check for the cause. Clothing checks for bunches or wrinkled fabric of the sheet, taking off quickly all appliances on his body such as his arm splints and AFO’s on his ankles to ensure range of motion, sliding the nylon sling under him to lift him quickly with the ceiling Hoyer electric lift to check his backside skin. Culprit: crystals clogging in the sp tube of his catheter. So, we did a beside sp tube change, in what used to be surgery in the early days. Now, it’s quick bedside procedure.  We do them monthly ourselves for Archer. Billy is very good at it as it requires strength.

 

While it’s been a while since we’ve had one of those distressed calls in the night from Archer, they are true wake up calls in every sense of the word. It honestly doesn’t’ happen but every six or 8 weeks, but we have no idea when. We avoid most of them because we are very careful about his care. His care is really simple, you just have to be careful and you have to care and understand. No short cuts. He took a propantheline tablet which is unusual these days but was very necessary to quickly help modulate the high blood pressure swing that AD brings on.  We have our monitors set so that one of us will hear Archer’s breath all night long and so we don’t miss any plea.  We learned the hard way, a way that still haunts me.  So, if a pillow slipped down or a heating pad moves when Archer moves his face in the middle of the night, or a cold towel on his forehead slips down, he has no way of removing it or getting out from under. No abililty. That is why we need good nighttime care, or someone reliable on call, or a monitor in close range.  We’ll figure it out. Just will take some creativity and many gifts. Please pray for this creation of a care team in Philadelphia for Archer assembled and trained by next August.

 

So, we are clipping along. Archer and I go to UPenn this week over his spring break to meet and talk with medical folks there, but first, drum roll…..Archer and Billy are going to drive in the big van to New York City to see none other than…..Steven Colbert tomorrow! True. Archer was invited to a taping of the show. In the old hang-dog days at the Shepherd Center, we would watch the Steven Colbert Show, and while Archer could not speak or make a sound as he had no air passage into his vocal chords as it was all bypassed for his nose, he couldn’t talk, but that show always made him smile. And Steven Colbert wrote Arch and sent him stuff while in the hospital, and then when the Pope came to Philly and New York City, Steven Colbert went to see the Pope, and sent Archer a poster he got of the Pope, which Archer had hanging in his hospital room. Now, he is going to meet Steven Colbert and go for a taping. So, he is headed for NYC with Billy. They have been super kind to make a space for Archer’s van, as it doesn’t fit into any garage! Too high, needs 9’ clearance!

 

We are only looking back to look forward. The metaphoric yesterday August 5, 2015…Today, let’s see….March 15, 2017. Ah yes, Sophomore English, remember….

 

Beware the Ides of March

 

Ha! I say today…. Be ‘ware of my Eyes in March

 

While I have been in constant prayer for Archer to get use of his wrists and to walk, I have also been in prayer for my other children, my marriage, our family, for you, and…for my own eyes to see. Something else to update you on: my eyes and perhaps this update just might help you or someone you know. I am just returning from 12 days away, spending time at the School for Self-Healing for the eyes in California–God love Billy that he held down the fort for all that while. It was a big deal to be away for so long. I may have told you I was diagnosed with intermediate stage of Macular Degeneration last spring, confirmed in August on the exact one year anniversary of Archer’s diving into the ocean accident August 5. Yes, it’s true. On that painful anniversary. It was devastating to me. More shocking and numbing though really. After 3.5 hours of eye testing at Johns Hopkins where my skin was jaundiced from the dye they gave me to drink and my stomach was nauseous from a test that can make you throw up, the good doctor at the Wilmer Eye Institute gave me a long look over and then leaned toward me very thoughtfully and said, I didn’t believe you had Macular Degeneration (MD). But you do, and it’s… in the intermediate stage.

He continued very gravely, Whatever it is that is stressful in your life, you must eradicate it.

 

Easy for him to say. I recall a small outburst of laughter as he had no idea of what the prior year had been. It was August 5 exactly one year later. On the inside though, I felt I was crumbling when I heard those words as they had a powerful impact on me. With no family history of MD and the fact that I am “only 55” “too young” to have MD, as they initially told me at the Wilmer Institute, likely to help boost my spirits when I arrived to have the second round of testing done, I was appreciative that such a well-regarded doctor as I was seeing would acknowledge the impact of stress as I don’t know if it is “researched” by Johns Hopkins or NIH. Perhaps it is. Stress? I thought I had been doing pretty well. That he had linked my diagnosis to the prior year just took my breath away.  But then again, it wasn’t rocket science. I mean, I had had an extensive check of my eyes, ironically, just a few months before Archer’s accident, on the urging of my optomotrist who takes good care of me, and the same films showed healthy eyes and no disorder or disease or condition.  None. So, with that kind of baseline, it’s easy to isolate time and to ask, What were you doing? Stop it. Yet, it had a profound impact on me. I hadn’t expected to show up with a disorder of my own body, system, my eyes.

 

Bt the more I have learned since last August, the more it doesn’t take a rocket scientist either to understand how it happened.

 

Whatever the reasons and causes, I saw the films, and I want to do something about my sight that is restorative.  So, I’ve been praying a lot for guidance and strength and for ease. I reached out to healers and others outside the norm I guess you’d say, something I have learned to do or perhaps am just predisposed to doing, but I’ve been on a side by side healing journey with Archer the last six months.  It’s largely why you haven’t heard from me in awhile.

 

I’ve learned a lot about Macular Degeneration. I imagine a number of you might actually know of someone who has MD, which is blindness of the central vision. It is still very surprising to doctors to see anyone with MD who is younger than 80 as most cases involve a breakdown of the visual system as a result of old age and family genes.  But I think there is much more that the medical profession doesn’t take note of or give weight to that can explain why people my age or in their 60’s are showing up with MD. Honestly and I would venture to bet that even some of you might know young spring chickens like me in their 50’s who might have MD.  Do you?  I hope you do not actually, for their sakes, but I would not be surprised. I don’t think it’s as uncommon as it used to be, and I would bet that we will see much younger people in the next decade who show up with MD, like young people in their 20’s and 30’s. That might be a radical claim but I believe it is so.  I’ll tell you why. You can decide for yourself of course.

 

Ok, here goes. Don’t get scared. And no need to resist. Just take in what I have learned and see how it sits with you. Sleep on it. Think about it.

 

I am working on a different eye lifestyle. With all the computer and iphone use and close up work on brightly lit–from-behind monitors without natural light and especially under fluorescent light, our eyes are straining all day long, and they do not get a break nor do they have the variety of sight experiences for healthy sight including eye exercise for looking out, horizon gazing if you will, at the clouds, the mountains, as far as you can see of the ocean or the fields. This upclose without looking out or without looking from side to side every 20-30 minutes leads not only to myopia, near sightedness, and the need for reading glasses, but also to MD.  I learned about cataracts and detached retina as well.  With all the city lights as well as with our iphones by our bedsides or other electric light or switch with a glow on in our bedrooms, our eyes do not have the total darkness that they need to rest, which breaks down the eye system. With our wearing corrective lenses whether glasses or contacts, or readers, our eyes continue to weaken over time, I mean, who was the last person you knew who went for an eye check up who wears glasses or contacts and the eye doctor or optomotrist said, Hey you don’t need glasses anymore.? Who was the last person you know of who uses, say 1.25 readers at 40 years of age, and 1.50 readers at 50 years of age, and on it goes, a lot as the readers do not strengthen the eyes, they weaken them. And—this one might upset you but I think it has a lot of merit– with our wearing our sunglasses all the time, the retina of our eyes do not have a chance to send the signals to the brain to release melanin to protect the skin, do not have a chance to allow the eye to exercise to naturally adjust to light, and do not allow in the natural absorption of vitamin D of the sun which the eye system needs, all of which leads to more weakening of our eyes, manifested by needing our sunglasses more and more not to mention greater light sensitivity. Ah, it’s such a shame, what we are doing to ourselves with our modern conveniences (and vanity, I mean, I love my revos and all my colored reading glasses). But the medical profession is just beginning to understand the many improperties of melanin and it is largely not understood.

 

And, with all the reading that we do, we have lost the practice of focusing on details, like looking closely at each letter of a word; instead we scan quickly over pages and pages of text or quickly over images on instagram and website use, all of which overuses the macula not allowing for the eye to have enough variety of exercise and not allowing the eye, ironically, to focus on details, like looking at every petal of a flower, or every hair on your lovers scalp.  In fact, the faster we read, the more we need to take frequent eye breaks and gaze out at the horizon, wave your hands in your periphery to wake up the underused parts of the eye to balance the entire eye system. And, love the sun. Your eyes and mine need the sun. Not looking directly into it but being out in it, with a hat, not sunglasses. With few exceptions such as the glare of waves if you were on a boat regularly or the glare of the sun on the snow if you were a skier regularly, but that’s about it. Now, I am fully aware that this may be jarring to you, as it was to me 6 or 7 months ago, and I am fully aware that many—but not all– in the medical profession would say these data points are wrong because they are not researched or they are researched that the sun causes damage. But really, wearing sunglasses is like a dog chasing its tail if you ask me. If the retina needs sun to send the messages to the brain to release melanin, then of course we are getting more skin damage as a result of wearing our sunglasses!  I know, shoot me.  But think about it. I hope I haven’t lost your faith and my credibility (smile) but it really is interesting and I am really wanting to do my part on good eye health. You never know, my intermediate stage MD may just reverse itself over time.

 

Well, it’s good food for thought. You can do your own experiments but my little experiment is only 6 months old, and now newly invigorated from my week at the School for Self-Healing in San Francisco with a series of eye exercises like palming (sitting in blackness with my hands cupped ever so gently over the eyes for 15-20 minutes at a time, 3-4 times a day, to provide rest for the eye during the day.)  It just seems to me there are so many good things for us that we have known for centuries and throughout time that go unresearched, and just because something is not researched doesn’t mean it is invalid or that it is to be poo-pooed.  There is such abundance in the universe for healing.

 

For me, I believe I have more understanding of how I have a diagnosis of MD. The many months of living in a hospital room, in crisis, was confining to the eyes. It was just so constant, so intense, all the time. I share this with you so that you can take care of your eyes. The one to two hours of sleep that I got each night did not give my eyes enough time to naturally cleanse the daily debris generated in the macula (middle) of the visual system as a result of the hard work of the macula daily (medical fact). The cones of our eyes are in the macula. The cones give us color and contrast and depth and shading, and basically they throw us a big eye candy party every day (medical fact). The never any total darkness at night never allowed for my visual system to rest, as the eyes are always on when there is light (medical fact); we need total blackness, ideally at night, to rest them (medical fact).  The glaring monitors glowing all night and day that I watched like a hawk close-up so I would stay ahead of the next beep or clang signaling the end or near end of a drip bag and hitting the Clear button just before the cacophonous sound would pierce the air trying so hard to give Archer a quiet space for healing so his auditory system could relax, this intense scanning scanning focus of close up data lit from behind or from fluorescent lighting was really hard on my eye system. I had no idea of how harmful those monitors are, on all night long, on the visual system. And, it didn’t help my eyes that I wrote the daily updates in the dusk or actually using the glare of the monitors as my light (makes me shudder as I think about it) while I thumbed as fast as I could on my iphone the daily updates, summaries and observations from the day. I’ve since learned that working on a computer without good lighting, similar to watching TV or movies in the dark, can compromise the visual system over time. And any reading in the dark or poor lighting is so very hard on the eyes. And when our eyes hurt, we then rub them and that is so hard on the eyes too.

 

It’s a lot to learn and think about. I have wondered if there were any other way I could have gotten my updates to you other than dictating them, as that would have awakened Archer. The only time I had was the night when Archer had a chance to sleep if I remained awake to silence his monitors and then go get the nurses, a negotiated deal I made with most floors of nurses once we were there for awhile. It’s ironic because I was so intent on making sure he and his body got some rest as I knew how important rest was to healing. It never occurred to me that I needed rest too. I was linking rest to injury and healing. But we all need rest for basic well-being.  I am working on that as part of my new healthy eyes lifestyle. In looking back, I actually wouldn’t have done it any differently because I don’t think there were options. Archer was close to death a few times, we were battling a harsh environment and naysayers. The time I rested I was in deep prayer and my communication with you was in real time. And it made me feel your closeness and feel God’s closeness. And I knew you were there with us. That is what mattered the most. It really is. My eyes were a casualty, I will attend to them now that I can.

 

So, Sleep baby sleep and Open your eyes and see! Even if blurry! is one of my new mantras. For me, I have been resting my eyes the last six or so months, trying to get 6 hours of sleep a night, which is a huge change for me, not wearing corrective lenses that much, taking Preservision, eating a lot of fish, and doing a lot of eye exercises to wake up the dead cells in my left macula. My up close vision has actually improved. It’s amazing. I want to measure and test it again in 9-12 months. I’ll let you know.

 

So…medical research is just not the whole picture. It’s not. That is the biggest learning for me about the last year and half of our recovery, Archer’s recovery, and ours too as a family.

 

There is so much more to healing than what most—not all–doctors do or say. Yes, we are so grateful for good medical care, so very very grateful.  We need our 17 medical specialists for Archer, our handpicked Archer Strong Medical Team, and we appreciate deeply Archer’s caregivers who help us. Medical care is one part of the healing equation.

 

God’s universe is so very powerful. Faith is so powerful. Oh my gosh, just look at Archer! We are part of that universe and through us as instruments, many powerful things can happen to the body if we do our part, including collective prayer, and allow God to do his.  I want to have good eyesight or enough eyesight to see Archer walk someday!

 

So, can you all take a deep breath for Archer—doesn’t the breath fill you with ease and feel so good– and take in another for me, feeling the inhale, and breathing out the nevers, can’ts, won’ts—and taking in another for yourself feeling your belly fill in a way that is expansive and allowing it to relax in a way that restores well-being… that we all might breathe freely and easily and without stress.  And that we might see clearly. Let us renew that for each other. And let us consider the importance of our eyes. That we might see. That you and I can see what we need to see, allowing in all that is really there, the good, the bad and even the ugly.  Can you think of something in your life right now that you’d rather not see? Gosh, I can think of many things. So, now I am working on seeing them all. And I am willing to receive them. I will still advocate around obstacles and I will always hope. But it’s a fuller way of seeing to receive it all.

 

And that has been my journey these last six plus months since I last wrote you.

Walking the Discernment Path as I’ve begun to call this chapter of the experience, noting the difference between acceptance and advocacy, of energy and rest, of ease and action. Turning toward. Toward the pain and sadness and toward the sun. I’ve been practicing and teaching professionally for over two decades conflict transformation and turning toward rather than resisting. But it has been put squarely into practice in my life in a way I wish I had never known, and yet it is never so obvious that it doesn’t still require real work and commitment to myself and to others. It is always a Discernment Path. Such joy alongside the grief.

 

While I feel hope in my heart in profound ways, comforted each morning by the Creative Miracle prayer, thoughts of Fr. Bruno Lanteri, and awake happy and contented my five children are all alive and I feel connected deeply to each of them, and contented Billy and I are making our way together, that we reclaimed ease and laughter, and that Archer is going to graduate and go to college. Yet, there are the waves of grief that just wash over me still at times, and the now is a focus that helps to soften them. But it still happens. Like when we brought Archer home from a sport gathering dinner for all the varsity players and I asked how it was and what they had to eat and I learned he had not eaten.

Me: You didn’t eat?

Archer: Well, it wasn’t that I didn’t eat. It was just that, well, by the time I could roll over to the line, it was all gone (half smiling but a bit incredulous like it’s just the way it is mom, guys).

He continued, and…it’s ok, but you know….

 

He was there in the dining room in his powerchair. He didn’t want to ask someone to get him a plate of food. Ok, he’s 18 and it’s awkward still to have to ask for such things because he then needs someone to feed him, and that is intimate in a way or very personal, and the feeder really can’t also be eating. I get all of that but what rumbled was …no one noticed or thought about Arch. It’s not that anyone did anything wrong. But he was surrounded by his buddies, his teammates, and he was in an environment that knows well his needs and loves  him very much. But it’s just how it is. Dammit. It was 9pm. I felt the tight burning sensation in my nose as I could feel the hot tears welling up. What will it be like at UPenn for him? I turned away so he didn’t see.  It’s just how it is sometimes. It’s so not the same. Archer is the same, but he also is so not the same.

 

We just had a full moon Sunday night and that always means new beginnings as we wane and then begin to wax again.  We have so very many new beginnings under way with negotiations with UPenn in full swing the last few months for figuring out tuition and nursing care. Our roller coaster lives are still in full tilt. It slows at times just to let us off to rest only to hit the button and go go go again with new therapy, and new art projects and being invested again in the lives of our other four children all in, so while each day is packed with coordination of care and logistics and therapy, it is also packed with being a family again, being at home again, and transitioning back to mediating and speaking and running our company, www.BaltimoreMediation.com.

 

I’m sending you a huge group hug. We love you so much and we don’t even know who so many of you even are. But we have felt your love and your good intentions and your prayers. And we still need them. Many of them.

And, actually, please pass the word for me to anyone who used to get the updates and who might be at all interested that I am writing again, oh my goodness, there is so much I want to talk with you about– family, marriage, healthcare, Archer, life!  Archer would never be where he is without your love, your care, and your prayers. Prayers of all faith traditions, we have been recipients of your goodness, your generosity, your love and beliefs. And for those of you who have written to me that you are atheist, you joined with us too. It really is true that we are all in this together for each other. That is part of the Creative Miracle I think.

 

I will close for now. Will you join me in reciting the Creative Miracle? Ready? Here goes…I am imagining each of you holding hands wherever you are in your city or town or in the country or on the plains, from our East coast to West coast to Canada to Mexico and South America to South Africa and West Africa to Europe and to Asia, to Australia and New Zealand to Antarctica, we have friends in all these places and new friends now who are friends of yours in these places, feel each other’s love as we are united with each other….

 

“God of all creation, you who spoke a simple command and brought forth light from the darkness, we call upon you now to send forth your miracle-working power into every aspect of Archer’s being. In the same way that you spoke unto the dust of the ground when you created humankind in your own image, we ask you to send forth your healing power into Archer’s body. Send forth your word and command every cell, electrical and chemical impulse, tissue, joint, ligament, organ, gland, muscle, bone and every molecule in Archer’s body to come under complete and perfect health, strength, alignment, balance and harmony.

 

It is through you that Archer lives and moves and has his being. With every breath he takes, he lives under your life-giving grace. We ask you to touch Archer now with the same miracle-working power that you used when you fashioned Archer inside his mother’s womb. As surely as you have created Archer in your image and likeness, you can also recreate Archer now and restore him to health.

 

Please fill Archer with your healing power. Cast out all that should not be inside of him. We ask you to mend all that is broken, root out every sickness and disease, open all blocked arteries and veins, restore his internal organs, rebuild his damaged tissues, remove all inflammation and cleanse him of all infections, viruses and destructive forms of bacteria.

 

Let the warmth of your healing love flood Archer’s entire being so that his body will function the way it was created to be, whole and complete, renewed in your perfect health. We ask this though our Lord, Jesus Christ, your Son, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen.”

 

Amen.

 

Sending love

 


 

 

Thursday, December 22, 2016

Archer Senft

Friends and Family Update

Wednesday 12-22-16, Month 17

 

Seasons Greetings my dear family and friends.

It has been way too long I know since I updated you. I hope you know that I have had you on my mind daily, with gratitude, and I hope you know that I know you have not stopped praying for Archer and for our family.  Thank you. I know you must be praying and thinking from time to time about Archer, breathing for him and sending him positive intentions. Please do not stop. I have so much to report that could not be happening without those things, the work of the energy of the Creative Miracle.  Intentional prayer is so powerful. You know, God never abandons us even as we suffer. The suffering is just our being human but it’s in that humanity, divine and broken that I think God touches us most.

 

For the Senft family, the reality of the new normal in juxtaposition to the old normal has absolutely stunned me as much in the last few months as the first year.  So much has changed: our lives, our relationships, those who are now in our lives and our relationships, our house, our eating, our waking, our sleeping, everything we do, and everything we do not do. Homelife is so very different, marriage is so very different, work life is so very different.  Our little Rockwellian home is… well… I hope still Rockwellian, you know what I mean. A little chaotic, funny, and closely knit. That’s a phrase I had not thought of before but which a number of different people over the years have used to describe our house when they visit. It really all started with Paula who would perch up in a tree in our front yard reading as her brothers raced around playing whatever the sport of the day was while the youngest whoever it happened to be over the years would be carried by the others or playfully handed a football when he could not even yet grasp any large object because so little as a baby. I can see those years now in that one picture. We do have the most wonderful children who love and care for each other deeply.  I bet you do too.  What a gift. The way our big kids all rallied to be in Baltimore is still astounding to me, without even being asked.  But so very much has changed. We are still seeking a rhythm that seems to have emerged but then changes.

 

It’s hard to know what is still just a temporary passage and what is more profoundly long term, here to stay, both the pain and the joy. The pain is no longer physical really. OK, so my eyes took a bad hit and I’ve been focused on healing these last four months so I have not written you I am sorry to say.  For it’s really the sadness or abrupt reminder of what it may  have been like, ah, there I go and I have to always catch myself. Not worth getting ensnared in the coulda, woulda, shoulda’s.  It is about the now and how to continue to make sense of the past and find the joy in the  now. It is afterall, a complete gift that we have five children and that they are all alive and well.  A total gift.  A total gift.  You too. To have people in our lives we love is a total gift.  Archer’s being alive is something I don’t ever forget.

 

It’s just a lot of emotional swirl, embedded in the coordination of daily care and supporting Archer in every way we can to be independent while he juggles a truly herculean schedule of school and therapy and creative design, that can rise up and catch me by surprise sometimes, the depth of it.  The reality of Archer’s being paralyzed from the biceps on down is particularly stinging in a new way that I had not fully appreciated before as we look so normal now. What’s there not to love about looking normal for goodness sake. And that is how we want it to be, normal. But the truth is as Archer told me last week on our way home in the van from our afternoon/evening round of physical therapy in a pensive soft kind of voice like he had been thinking deeply,

Ma, I don’t think even you understand what it is like: there is nothing, nothing, I can do for myself.

There was a long pause. He continued,

You have no idea what I would give to be able to go for a walk. I’d give anything if I could go for a walk.

 

It kind of caught me off guard. And it made me weep instantly. For some reason that day we were driving home in silence, not absorbed in our usual listening as we often are to the great music playlists Archer creates on his phone and via wifi we have in the van, but I guess we were both absorbed in our own thoughts.  And there it was. I felt the stinging again of the salt water of tears in my eyes and didn’t want Arch to know, so I remained quiet for a bit until it passed continuing to look ahead driving rather than in the back mirror that we have positioned to see Archer.  Then I said, Arch, you’re right. I don’t know. And I am so very very sorry you have to experience that. I love you so much and I am so very very sorry you have to experience what you can’t do.

 

We drove in silence.

 

Even I forget the yearning to walk.  The ability to walk that we have. Oh my God, let me not forget how precious, like the breath, it is to be free to walk.  Right?  To walk, Choice of movement is freedom. At this time of year, when there is so very much to be grateful for, I am pondering not only the gift of movement but what it means deeply about freedom. It’s deeply in our DNA as humans.  Right?  Our freedom as humanbeings is part of moral consciousness I think.  The ability to walk, and to walk where we want, is such a simple but profound manifestation of that freedom.  In very simple ways, think of your ability to do what you are especially doing this time of year, going many places. The errands, the walkin in and out of stores, the driving, the meeting friends and walking into restaurants, dropping off goodies to friends, carrying goodies, walking into friends’ houses, getting dressed in the morning, walking to your closet to choose what you will wear, walking to the bathroom, brushing teeth, walking into your kitchen and the making of breakfast, the mere movement out of bed, we have so many choices of how we walk and how we exercise our freedom with our arms and hands and legs.  Arch can’t do any of those things himself.  Oh the glory of what it would be like for him to walk.  Or use his hands!  And I know he will someday. I just know it. Yes, breathe in the gratitude for your hands. For your fingers. For your arms. For your feet. For your legs. For your spinal cord that supports your frame. For sitting upright, on your own, unassisted, not falling over, not strapped in.  And please take a step or two for Archer today. And for yourself, and for others you love, and for those you do not know who also may not be able to move today as we can. Breathe in that freedom as you step. We can create more energy for the healing field this way I think. And Archer will need it as we continue in this second year, and with our complicated but exciting news to share with you.

 

So, while it’s so hard to believe we are in the second quarter of the second year of recovery, Hard to believe, isn’t it?, Archer has come so very far.  I know that.  We do not take it for granted.  I suppose the new blueprint was created way back in Atlantic City ICU when Archer told me, via our use of the children’s plastic board of letters from the CVS which we used to decipher and code what he wanted to tell us, when he could not speak because of all the breathing apparatus that he was hooked up to, that he wanted to graduate with his class from McDonogh School.  Of course he did. Of course. I never thought otherwise. Of course.

 

It’s so very hard to believe that the medical staff had told us in that first 24 hour period that we could expect Archer to be rehabbed in about 4 weeks after he left the ICU.  We were all so very naïve.  And no one, no one, had any appreciation for the impact of all that salty sea water Archer swallowed in his lungs and the level of injury from not just a classified C4 break but a burst where the shards of bone were shattered into his spinal cord.  We just had no idea of the course of his very complicated recovery.  Once at the Shepherd Center, I recall vividly the panicked look in Archer’s eyes when a casual comment was made by one of his therapists that some kids don’t go back to school or take a year off for rehab.  That was not want Archer wanted to do at all. But I heard the part about maximizing the potential of the body in 12-24 months post injury. So, Archer wanted to graduate with his friends and that has framed so much of what we have done.  I wanted to maximize his physical and spiritual recovery, of course he did too, but he really wanted to graduate with his friends and return to McDonogh. But again, no one, no one, calculated the devastation of what the sea water deep in Archer’s lungs caused to hold him back and what the consequence of what the medical profession calls a “burst” rather than a break in his neck meant to his recovery.

 

God, we give you thanks for helping us muddle through what we did not know. And the break at C4, the burst from C2-C5 required bone from a donor’s hip in those first 7-10 hours from injury. To you, anonymous donor, we give your life thanks and your decision to donate.  Your young life taken was not in vein, whoever you are.  Isn’t it amazing how we are taken care of by so many people we do not even know, who went before us paving the way or leaving us with something very valuable, and those in our now.  I hope to be one of those persons. There are so many angels and good people and good decisions made for the well-being of others.  So many decisions really matter. Even the little ones.  Maybe we can all think today of a decision point we will have to decide today or this week that could either be just meeting our own interests or that could be a decision that provides good for both yourself and another or for others.  Powerful, really. Thank you for all you have done for our family, and I know I don’t know many of you either. Thank you.  Archer created a card. Here it is for you, thank you.

 

tgiving-card-fronttgiving-card-back

 

 

So, I want to begin to share with you a behind the scenes strand of Archer’s journey. And then more at a later time after this week. It’s going to sound a bit crazy, ha! I can’t even believe I just said that! I mean, what could possibly sound crazy at this point, but there are a few things I did not write to you about amidst all the hospital and medical intensity of the last year, or at least not much.  I suppose on one hand because there are only so many hours in the day, and as a look back, what I will begin to share with you now with the end story, or mid story, and then I’ll circle back, was incredibly complicated, almost as complicated as the medical issues, and yet, it never took the drivers seat in the way that the drive for restorative medical care did.  It’s true that our driver’s seat, at least the way I viewed it, was always reserved for the drive to breathe and stay alive and recover and to find the right team to accomplish that. But there were other things on that journey like Archer’s education, insurance and earning a living and holding a family together that I have much to have a conversation with you about. I guess you could say, all those things were sitting in the front seat, passengers, active passengers also giving input on the map and destination.  While it won’t be today, it will be in the next few writings, I will share with you the turns and twists, and twists and turns of the journey of these passengers shall we say. I want to start with the educational journey, what we did to keep Archer stimulated and learning.  And I want to then share our good news.

 

Archer did tell me this summer something that made me smile, which I also felt had a more profound meaning than I could fully know.  It was in the evening of one of the many days he was putting in 6 hours of honors biology on line with a teacher in Texas, just to give you some idea of the craziness of what we cobbled together to have him get what he needed to be on track for graduation.  It was late at night and I was checking in on him again hoping he was ready to go to bed. He hardly sleeps. He is always working on something: math, physics, drawing.

 

His morning and night time program cannot be short-cutted or hurried, and it takes about 90 min to 2 hours to do it well. It is critical for his body functioning and critical to inspect carefully every inch of him for any pressure points on the body to avoid the dreaded bed sore. Billy and I find ourselves often checking with Archer at 10pm, 11pm and then at midnight on most nights, summer time and school nights, to see if he is willing to stop working. There are many nights he is not in bed asleep until 1:30am or 2am.  And, we get him up most mornings at 5:45am for the morning program. So, rest is critical. For us too. But he’s 18 and we want to support his making his own decisions too. Tricky business eh? It is. Even on something so basic as getting to bed.

 

Anyway, on one of those summer nights… Archer said to me,

Ma, I think I’m going to be OK…

I looked at him. He said,

You see, I have all I need… and he lifted his arms by shoulder shrugging and drew his hands, limp as they are when raised up, to his ears, and grinned.  He added,

Right here, Ma. I have everything I need between my ears.

And he just beamed at me confidently, referring to his intelligence. He literally seemed to be glowing.

I said,

Yep, Arch, you have all that you need right there between the ears and in your chest that houses that big heart of yours. Don’t forget that part, buddy.

 

And we both just grinned at each other. It was a sweet moment.

 

And he has been at work furiously once we got him hooked up with an ipad and a special stylus last spring.  I’ll put it in a nutshell: he’s on track and he applied to college this fall.  Yep, it was in many ways for us the normal. Oh, my goodness, much more about that in a later update I promise, as you can’t imagine the different receptions he had from different schools that we visited this summer. Yes, we did some day trips.  Archer ended up with three schools he was very interested in, all for Engineering, one in Philadelphia, one in Atlanta, the other in California. More on that later too. Promise. We haven’t figured out how to transport Archer overnight anywhere since he needs the hoyer lift etc. But we will. More on that later. But we told him we’d figure it out if he figured out where he wanted to go for the best program for him. We are all acutely aware of the snowflake aspect of being a quadriplegic at least in these first years, and oh my gosh, did I tell you he has grown three THREE inches in the last year? Can you believe that. He’s 6’4”, and when you are paralyzed, that’s a big mass of body to move, so we have some things to figure out for sure. But he applied to college. Yep, he did. While we took it for granted that of course he would apply to college, he spent, as did all his peers at McDonogh, the better part of the Fall Semester assembling applications and essays and taking the SATs.

 

He missed of course all the SAT test taking opportunities last year, and would you believe, oh there is so much to tell you, that the date in September he was scheduled to take the SAT, that the folks at College Boards sent the tests to the wrong school, the Baltimore Polytechnical Institute where Archer had been enrolled last year! Oh my, it was a mess and there was no changing that. He was unable to sit for the test, try as both schools might to remedy the situation, given that Poly was not a testing site and the school was closed and locked for that weekend and College Board would not allow the test to be courried to McDonogh. So, Archer had only one time to take the SAT and one time to take the SAT subject tests before the college application deadlines.  Nothing like a little pressure, but pressure doesn’t seem to adversely impact Arch. He remains so steady.

 

You might be wondering how in the world he took either test given that he can’t use his hands or arms.  Well, it’s really a how in the world does he do any of his school work. He’s rather extraordinary we’ve seen. While he inquired at our two college visits this summer about soft ware for physics and math, and heard there was none that could assist his needs, he did find a slide calculator for calculus on an ipad and he found that using Evernote gave him the ability to have a scratch pad and he developed his own code for formulas that he uses for puzzling out problems since he can’t yet write.  He has spent most of his Saturdays this fall in 11-13 hour sessions on his own doing physics problems.  I am not kidding. It’s really he said what he has to do because he is in 6-8 hours of physical therapy and aqua therapy downtown most afternoons after school until 6:30pm and then we have alternative therapies at home at night, like massage and energy work that take time too, so the things that take a lot of time like his essay typing and math problem working it out have been left for the weekends.  I have often walked into his room and he is bent over furiously typing away at something on the flatscreen of his ipad, which Billy and the Amywheel chair rep rigged up to a moveable metal arm extension on his chair, with his metal stylus.  He has gotten so fast and his bicep has gotten so strong that he can now in a very shakey way on the tablet even write out problems this past week.  It’s pretty cool and amazing.  (I believe it may lead to a free hand drawing again someday). He’s determined to maneuver his arm and hand with his bicep rather than use a mouth stylus.  The growth in what he has been able to do this Fall is extraordinary.

 

math

 

 

kki

 

Other times I would come in to check on him and his brothers, they watching a soccer or football game in his room—everyone likes to hang out in Archer’s room—and Archer would have his headphones on, he usually does listening to music, but he would be in a weight shift (he has to tilt his chair every 30 minutes for one minute to shift his body into a different position to take the weight off his backside to prevent pressure wounds, the dreaded bed sore), and he’d have his eyes closed. I’d ask him how he was doing thinking he may have fallen asleep which would not be good either re pressure sores, but no, he’d move side by side to wriggle his head out of his headphones to tell me he was working on the problems, envisioning them in his head to puzzle them out. He had spent a lot of time envisioning problems in his head starting in the days at the Shepherd Center when we got the former chair of the Math Department at Emery University to come in and tutor Archer in calculus.  Those were hang dog days.  There was Archer, unable to speak, unable to hold his head up much, his eyes almost sunken in his head droopily peering out of the swaddled hot towels that he so preferred back then for many months to help him regulate his body temperature. I was constantly going back and forth to the ICU warmer to snag towels all day long as they also seemed a comfort to him.  It was crazy though because Archer went from preferring a room temperature in the 40’s where Billy and I had to wear winter parkas in his Atlantic City hospital room to then wanting in Atlanta hot towels all day long wrapped around his head and face and neck and shoulders.

 

It was a weekly struggle with the physical therapy schedule and Archer’s main doc to get the educational piece at Shepherd as it was truly not a high priority in their program for recovery.  But it was a high priority in ours.  Alongside everything else. Archer had said he wanted to graduate with his peers and I knew he had to stay on track, whatever that looked like.  McDonogh School was again magnanimous with our conferences in the early fall and through out figuring out what he needed and providing Advanced Placement curricula syllabi to me that I could give to instructors I could find.  Archer wanted AP level, Advanced Placement.  So, that’s how that wonderful man from Emery came into the picture, as a volunteer, for Archer.  I would wheel Archer into a tiny empty room with a whiteboard, nothing else, 2 times a week on a late afternoon after his therapies were finished for the day.  Actually, he would sip and puff into a tube that propelled his electric power wheel chair and I would follow with the ventilator pushing a tray with the respirator on it and carrying a tank of oxygen. What a site we were. The professor would patiently write out calculus problems on that white board for an hour, walking through how to do them. Archer would roll up closely to the board and just watch, hang dog watch.  There was very little interaction. Those were also days when Archer was in a lot of pain with his skin in high sensitivity to everything.  It was hard to say what was happening and the man thought it might not be worth continuing, but I begged Shepherd to still have him come. Archer told me something so profound months later. He said that it was in those moments when Chuck came and wrote problems on the board that he knew he was not brain damaged because he could follow everything the Professor drew and explained. And he said he knew then he had a future.  Isn’t that amazing.  That one piece of the puzzle gave Archer the hope he needed to muscle through the therapy and everything else.

 

So, five school systems later which is what it took these past 12 months of cobbling together Archer’s junior year, so much to tell you about all of that at a later time, here we are, and Archer was narrowing down what he wanted to do and could do in a college program and also paying attention to climate.  He felt he could not go further north than the longitudinal line we are on in Baltimore as the cold and damp really is hard on him, so that eliminated two of the three schools, MIT and Cornell, that had the program he was most interested in, which is a combined Engineering and Digital Art program.  It left Penn in Philadelphia, also part of the Ivy League. He found two other schools as well in warmer climates that were also close to what he was looking for, Georgia Tech and USC in California, and their Engineering and Film schools, plus at USC there is a scholarship possibility from the Swim with Mike program, a flat campus and a particular stem cell physician I have become friendly with last spring and summer as we are super interested in his work and we hope to keep Archer on his radar screen for future experiments as the doc is the guy you have read about with the quadriplegic man who regained use of his arms after an auto accident.  It’s very exciting and we remain very hopeful for Archer.  (Sadly what we are learning is that these tests also have their best shot within weeks of injury, and Archer could have never qualified as he had so very much going on related to his lungs and inability to breathe but we are learning and still preparing…).  Ah, I digressed. So, back to college….Drum roll please….

 

Archer Senft received an Early Decision acceptance into the School of Engineering at the University of Pennsylvania. Yep, he will be entering Penn as a freshman in the Fall 2017. Isn’t it exciting!  We are so very very happy for him.  Yes, he will graduate on time from McDonogh.  Yes, he will be with his class. He will be 18 and on course despite this oddessy.  We are so pleased for him.  God is so good.  Archer has worked so hard.  And, of his two school visits this summer, to UVA and to Penn, while he was discouraged by faculty at both schools for various reasons, neither believing in him really or seeing the potential, or better said, both doubting Archer would be able to do the work required, they don’t know Archer Senft, and as it turns out, their admissions decided differently as he is in.  So, it really came as a surprise.  Penn was his first choice and I think he feels deeply satisfied about the potential. I think he was also practical about not being too far as we can go back and forth and it’s a compact urban campus that is also fairly flat so he can get around. And it has a new dorm with accessible handicapped rooms that we hope he lives in. Can you believe it?  GA Tech and USC were much more imaginative and welcoming of Archer’s being there when Billy visited as if he were Archer to check them out, and we are grateful and maybe Archer will do some summer work at either location.  But we honestly didn’t know how we would get Archer to Georgia or California and back again, but we were ready to figure it out, even locating wealthy folks with personal jets—why not– and even to temporarily move, just like last year or one of us.  Those conversations had begun in our household.  I prayed as I suspect Archer did too that the right school would emerge for him and the acceptance to Penn is taken quite seriously.

 

Yes, there is so much to figure out. And I know that the way to start is always by shoring up relationships and resources as the safety net and the web gets created.  We do have a relationship with the head doc at the McGee Hospital and Spinal Cord Institute in Philadelphia where we took Archer for evaluations and for second opinions last spring and early summer, so that resource factored in to his choice of school as well. As did the presence of a number of dear nursing friends from our summers in Cape May who live and work in Philadelphia, in particular a former lifeguard instructor when Archer and his brothers were in the Junior Lifeguard program as part of the Cape May Beach Patrol.  She is now a very specialized rehab hand therapist and she loves Archer and we love her. I know they will form the kind of support network Archer will need because they care for him and our family. That is always the trump card. Do your caregivers care about you.  Well, you know how we have built the Archer Strong team, so I don’t need to tell you that, but it always remains a litmus test. Honestly, I hope Penn can pass that litmus test.  It is not lost on me that a place can be chock full of intellect and power but without heart, it lacks goodness and human vibrancy and well-being. We are hopeful Penn has these qualities for Archer. I remain open of course and hopeful.

 

You know what I think will be one of our biggest challenges: How Archer will get in and out of the buildings at Penn as they are all card swipe, which of course, he has no way to do, unless he had a constant companion.  But I imagine that the smart engineers there and Archer can figure something out.  All Archer said he was really looking for was a smart group of creatives that he can co-create and learn with. Penn has not ever had a quadriplegic come through their university, so we have a new partnership to create with Archer more in the lead now. We will assist and pave a new road for him as needed, handing off when he is ready, but he is ready.

 

Yes, we have so very much to do to in the new chapter of college. I’m even thinking of a partnership with the School of Nursing at Penn where the students could get great practicum experience if we had a small pool of 3 whom Billy and I could also train well for Archer’s care.  Not sure what and how the line up for good quality care for him, especially night and morning, will look like, or if we will go and live with him, alternating perhaps one week on and off, for the first couple months. Who knows; we’ll figure it out. Please pray for us that we will figure it out.  That’s next springs work and I will keep you apprised.

 

But for now it’s the Christmas Season and we are preparing for the Lord’s birth and family festivities and remembering that this time last year, we skyped Archer into our family dinner from his hospital room at KKI as he was not allowed to leave and they would not allow more than two visitors in.  I thank my Jewish friend Eileen who spent Christmas Eve with Archer until we returned to spend the night with him. This Christmas, he is so very much here in our house now, his presence felt by all and we are so grateful. And I think our children are most grateful. They so love being together and taking care of each other, and just being together.  And Archer’s room is the place to be.

 

And, for those of you who may not know, Archer started a business Slimeyard Slimes last summer where his humor and his snail design (slow but steady and sure) are found on tshirts and silk ties, all priced so his friends can afford them.  They are really very beautiful.  He just launched two new longsleeve shirts last week, a Nantucket red one and a dark grey one and they are beautiful.  See www.SlimeyardSlimes.com.  His venture made just enough money to employ 3 of his best friends and one of his brothers all last summer, and that made him feel very good.  We are sponsoring and he has a partnership with the non-profit ORANS. Proceeds for Archer will go into his Special Needs Trust.  Operations have moved from Archer’s old bedroom on the third floor of our house, to our basement, and now to the old GaRAGE Carriage House in the back that we just redid for insulation and HVAC and dryness.  We fondly refer to it as the Slimeyard.  When Archer was designing his snail, the short story is on the website, but I’ll tell you more of the story that is not there.  Archer added a little dash-a smile- to his snail design this summer. Check it out. That little dash Archer says is to make you smile. One smile creates another smile. And that creates connection and that creates hope. And that says it all about Archer Senft. He likes to make others smile, and he’s all about Hope. He hopes for today and he hopes for the future. He is on fire and we look forward to seeing what he reveals to us as that hope inspires his future.

 

dutch-slime-tree

 

Merry Christmas season and joyous wishes to every one for the traditions you are celebrating with your families, all honoring God and his goodness and generosity in our lives.  Fr Bruno Lanteri, pray for us. The Creative Miracle is still unfolding. And the main miracle is in three days.

 

Amen.

 

Sending love

 

 

Friday, August 5, 2016
Archer Senft
Family & Friends Update
August 5, 2016 DAY 365 plus 1 to grow on

 

You never know what God has in store for you.

 

Do you? Not really. Except that it can be good.

 

Painful as it might be getting to good, or seeing the good, it can be good. If you so desire good.

 

It has been a hole year. Oh my, funny. I meant a whole year. It was a typo. But actually, it’s been both. Hole and whole. From broken, shattered and torn to fused, glued and stitched back together, from the darkness of death to the perfection of life’s breath, and from the emptiness of despair to the fullness of hope. All of it. All of those crazy contradictory extremes that somehow have lived side by side for us, acutely, this past year.

 

So, as I’ve been thinking all week about the coming up on the one year anniversary of the injury date, as if the date itself was like the he-who-shall-not-be named in Harry Potter. But it’s not like that really. I have had other quad families tell me their sons encircled themselves with family and friends to celebrate. But it’s actually not like that either. It’s more that it’s a date, a marker, a day that we shall never forget. I must confess that when I pause long enough to contemplate that, I get weepy, really quickly. It just comes on. The welling up of tears. The access to the flood of emotions is not hard. The pain behind the emotions is. Like now. It’s just so hot and stinging.

 

It really does take a long time to process grief, even when I hold hope in my heart. And a rosary in my hands. It just takes time. Do you have the same experience? I imagine many of you do.

 

It has been such a hard year and yes, there is so much to celebrate.
August 5. A day we shall never forget. A day of death and a day of life. Also, Fr. Bruno Lanteri’s feast day, a day of death and a day of life.

 

This time last year, August 5. It was a Wednesday.

 

The day that felt like the world had stopped turning. Or was turning so fast and we were the only ones in it. Everything else was blocked out. Where were you when you heard the news? I have had so many people, you cannot imagine how many over the year, tell me they remember exactly where they were when they heard.

 

I am acutely aware that Dutch is again at camp, and that unto itself, is such a blessing. We were so careful about what to say when we called him in Maine last summer, and how to tell him because I wanted him to be able to return to the camp he so loves without the scar of the August 5 memory. I knew that then. But I forgot until just now that the fact that he returned to camp this summer was exactly what we had hoped. And if his letters, which are hilarious, which he writes every few days as I think the camp must give them free time and tell them to write home, are any indication, he is in his element and living the camp life as a 14 year old boy having a ball, learning more about himself and growing more independent while deepening friendships. I am immensely grateful. That means that August 5 or August 6 or 7 or whatever date it was when we called him and they got him out of the woods, is not a scar. If anything, it is for him just a marker. So I hope he is processing the anniversary well, and better yet, that he didn’t need to process it too much.

 

For me, though, there is a great deal of processing, and I think for Archer too. I know for Archer too.

 

So, August 5 last year. I keep getting these little flashes of weirdness about the day itself all week. For instance I just went to Cape May a few days ago to go take care of the necessary preparation for the delivery of Archer’s hospital bed as I needed to move and figure out where to store the queen size mattress set that was in the room that he will now occupy.

 

I was driving back to Baltimore on the Garden State Parkway and flew past my exit 10, missing it, in the exact same way I had last summer with the new construction with only off and on ramps and old landmarks replaced with high block walls and highway where intersections used to be. When I realized it, I then got off at exit 13. I had never taken Exit 13, nothing about it was familiar, and yet, it was eerily familiar. And then I recalled. I had been there. I had missed Exit 10 last summer and was just getting off at Exit 13 and trying to figure out how to get back on the newly odd highway or if I my GPS could take me to Baltimore a new way. I was poking my GPS trying to see what it would tell me and I was frankly lost, as the coordinates seemed to have me going in circles. It was in this state that I got the phone call. The call. The call any of you dreads. Wednesday afternoon at 3:50pm August 5. It is still on my phone. The set of calls. The first one from Archer’s good friend who was saying, Mrs. Senft. Mrs. Senft and he were garbled and it was gibberish and he hung up. I knew something was terribly wrong. Then I got a second call seconds later, Mrs. Senft, ….
I was driving around that Exit and I went crazy.

 

I couldn’t find my way onto the right roads and highways to get anywhere and all I knew was that I needed to get to Archer. They were waiting for a helicopter to take him to Atlantic City. No, I should not come to Cape May. I should go ahead t Atlantic City. It’s serious, Mrs. Senft. He’s broken his neck. Oh my God. Where was Atlantic City? I had to get to Archer and to Atlantic City, and I couldn’t figure out how. I was so confused. What does it mean a broken neck? I remember I was as close to feeling what a wild dog must feel like when caged and trapped. I kept hitting my GPS on my iphone to refresh over and over and it was sending me in all kinds of wrong directions, in circles, or so it seemed. I was driving crazily. I honestly could not think straight. I must have impressions of those roads and little road side establishments as I tried to get out of the lost maze, but to this day, I recall very little about how I got to Atlantic City except I remember entering Atlantic City, driving very fast, and feeling this ribbon of highway open up in what felt like Oz, it was like another world from our simple close to rural experience on the little island of Cape May. I recall seeing the big overhead green highway sign to Caesar’s, and how it sparkled in the late afternoon glare of the sun, and it was as if I knew exactly then what to do. Like I knew where the hospital was. It’s amazing what adrenalin does. But I don’t remember much of anything else after that, at least for about an hour maybe. I really did have a breakdown. When Petey tells me so gently to his day that they had me in a wheelchair and I couldn’t stop asking, Where is Archer? Where is the chapel? Over and over and over, it really makes me sad. My God, I really was so… my world stopped in that hour of memory lapse and brain scramble. I was not able to make sense of it and my brain and body just shut down I guess. And then, when I heard that the helicopter had arrived and was on the pad, everything became acutely vivid. Like the drug wore off, the light switch was turned back on.

 

So yes, that Exit was familiar. The call, so vivid. I remember exactly where I was. I hadn’t thought about that until this week. Funny that it happened again, my missing that exit to almost bring me home to reliving it. Like a little bout in brief trauma therapy. So I wonder, for those of you who heard on August 5, where were you? You were likely at the Jersey shore too, or the beach on the Delaware/Maryland side, or on vacation elsewhere, or as one friend told me, she recalls hearing as she was about to play a set of tennis at her club in Baltimore, and the world stopped. Everyone says that. It’s like the world stopped for that moment.

 

So, where were you when you heard the news about Archer? Do you remember? Maybe you do, maybe you do not. But I have heard from so many people this week who have told me, without my prompting or asking them, they have just told me they remember exactly where they were when they hears. Why is that? I think it’s just one of those things, one of those rather Big kind of earth shattering kind of things that changes your world and so you remember. And while Archer is not your son, he is like your son, or your grandson, or any of your children. Out family is like your family. Because something that is so common and easy and good, like going to the shore on vacation, is shattered in a mere moment. And it could have happened to any of us. But the thing is, it doesn’t. It’s so freakish. How many times have we all been in the ocean or body surfing or whatever? There are not supposed to be sandbars like this one. And we are all to have time, especially in the summer when the air is warmer and the sun is hotter, for refreshment. I mean, most Marylanders go to a shore someplace for some period of time for summer vacation. I imagine more American’s in the summertime find their way to water for refreshment. Ponds, creeks, lakes, rivers, the Great Lakes, the bay, the oceans. It’s where we go. Accidents like this are not ever ever imagined.

 

So, when it does happen, as it did happen, it chills the bone, and I think for many is one of those moments when you hear the news, and are shocked or saddened, that there is a what follows on the heels of that first emotion and thought, a secondary emotion and thought of, But for the grace of God, there go I. And it’s true. We don’t know what we were spared of. Archer’s accident could have been you, or your child, or grandchild.

 

Like a lady next to me at Mass last weekend when I drove over to Cape May said, she a stranger to me, turned to me at the end and asked if I were who I am. I said, Yes, I am she. And she proceeded to reach out and hold my hands and ever so kindly tell me how she prays for Archer. I am always so very cheered whenever anyone tells me they pray for him. I always say, Please please please keep praying. But then she said, And I was there. I was with my grandchildren on the next beach over. Oh, we heard the whistles and the action and we knew right away something very bad had happened.

 

It’s not on the same scale of course, but yet it is not dissimilar to 911 or anything else that is so freakish and so disturbing that happens in the world you and I take for granted for safety of movement and living in. September 11 for instance. I’m sure you remember where you were when you heard the news that the twin towers in NYC had been struck by an airplane or where you were when you saw the smoke and flames of the twin towers and the video on TV of the plane that flew directly into them. The dawning that it was a terrorist attack just couldn’t really sink in at first. At least for me. But I think for most Americans. Our country’s peace and tranquility was shattered. Please forgive me as our situation in no way compares to the horror of 911, but I think about these things. And how the brain and our emotions respond and also how we recover, as a country, as a family, with resiliency, and yet life is radically changed from those moments on.

 

I remember not being able to fully comprehend the magnitude and all that it meant that we had been hit by a terrorist. What does that mean we had a terrorist attack? I recall asking and thinking that and wondering what all it meant, with no framework for understanding the consequences. And so too, it was like that for me on August 5 with the news of Archer’s accident. I couldn’t take in the magnitude of what lay ahead or even, What does it mean a broken neck? I had no frame of reference for this journey.

 

And, it’s interesting really how some life altering events are so indelibly imprinted in our systems where our bodies remember from a mere impression, a memory that is deep in the cellular tissue I suspect. Like the unfamiliar but familiar Exit 13. Have you ever had that happen to you? Maybe it’s like déjà vu. Maybe it’s from a prior life, maybe it’s the prior life of your life now, in a way your brain didn’t cognitively process but the impression of the memory is there.

 

I remember and I was only a very small child when JFK was assassinated. I just have this impression of the nanny, who helped my mother in Charleston, South Carolina, wailing and falling on her hands and knees rocking back-and-forth in front of the television with her hands outstretched. I don’t remember anything else about the event but I remember that. It is so vivid and yet it is just an impression. It’s weird. I was only 2 ½ years old on November 22, 1963. Do you have memories like that?

 

I also remember vividly exactly where I was and what I was doing the evening my mother and I heard the news that my father’s commercial jet plane had crashed. The news came over the little dark brown transistor radio on the laminated kitchen countertop. I remember it and could describe it to you to his day. It was a news flash. I remember my mother turning and saying, Shhh as she listened, and then I watched her collapse onto the kitchen floor. I remember her apron. I was still sitting on the countertop on the kitchen sink with my little tootsies dangling in the clean warm water that my mother was using to rinse the soapy dishes in. I was only 3 ½ years old. The floor where my mother lay sobbing was a linoleum pattern of dark rich brown and rust and 1960’s brownish yellow colors in small stamped shapes like Lincoln Logs. I remember that floor vividly. It’s crazy the detail of the impression I remember, and yet it’s just an impression, for I remember little else. I always in later years liked the Lincoln log game. In some weird kind of way, it was so familiar, and I was good at putting together the patterns.

 

So I wonder, do you have memories like I do of places where you were when life-shattering events occurred? I hope you don’t have too many. But I wonder, for our family and friends, when you heard about Archer, do you remember where you were?
If you do, I hope it doesn’t haunt you and I hope you have a wonderful summer at the water and in the sand. Just no diving without knowing the sandscape.

 

Life does move on.

 

So our life has certainly had its ebbs and flows this year. I suspect I will blink and five years will have gone by. Then 10. One thing is for sure about Archer, he has more life experiences with life and death and fighting for his life than many. Even as I look back to a year ago August 5, he was just a boy.

 

He was a boy when God called him suddenly to be a man. Another quadriplegic’s mom and now friend of mine and I were talking about how our boys, hers close to 30 years old and 10 years out from injury, have been through so much, and are like grown soldiers having been to war. It’s true. But honestly, that too makes me weep. Young boys should not have to become men overnight in ways they weren’t supposed to, like soldiers.

 

So as I write, I am reminded of trauma. Not just Archer’s but my own, and that the grieving process is along side the trauma reduction process, which is alongside the practical getting good medical attention process, which is along side the trying to create well being process. It’s been quite a year. Thank you all so very much for all that you have done. It’s beyond words what you have done. But the energy field you have created for God to work his miracles is very real. You know that, right? I hope you do.

 

Last weekend and this week leading up to today has been full of these weird flashes of working through the trauma I guess and the highlight of the miracle of life and gifts. So, another odd thing that happened when I was in Cape May that also took me by surprise, in a similar way that my missing Exit 10 and taking Exit 13 that was eerily familiar with its flood of memory took me by surprise, was my short time at the beach. Since we really have not had time yet this summer to enjoy the beach, I had hoped to get in an hour at the Cove beach while they’re on the accommodations and event-planning mission last weekend. Oh yes, we will have a benefit to Bring Archer Senft back to Cape May on Sunday, August 14 and I’ll attach a flier if you can come.

 

Anyway, I had plans to drive back earlier in the day but had this strong need to get to the ocean. I know I need to face the ocean again and work through my many mixed emotions about it. Archer has not been to the ocean at all yet except for the overnight we attempted on Memorial Day and the rolling to the boardwalk with all the adorable children lining up to greet him on his first visit back. PHOTOS OF 6th GRADERS IN CAPE MAY AT THE COVE. But he never went or looked at the ocean. Archer was not sure he wanted to roll to the boardwalk to begin with, but he plucked up his courage and went. He really never got much closer to the water and told me he wasn’t ready yet. It was very emotional for him I think. Anyway, a week ago when I was back, I biked to the beach and was struck first by not only the new shoreline from Mother Nature’s winter, but also the signs that were posted, signs that have never before appeared on the beach. Signs that warn of back and neck injuries from diving accidents. How about that.

 

As I walked to the gentle surf of the ocean with my beach chair in hand, I decided to get very close to the water, as this year, the beach is reconfigured rather dramatically so that the slope is very long and gentle just like it used to be years ago when the kids were growing up and it was easy to plunk my chair down into the surf, with the small little waves of the ocean rippling around my feet, the way I used to do as a girl all those summers my family spent on the shores of Lake Michigan. As the water leapt up my feet and under my legs ever so gently, I was caught off guard and spellbound by thoughts of what it must have been like for Archer floating in the surf head down, body submerged, for so long, having taken in so much sea water in his lungs from the crack of the impact, remaining calm, holding his breath and counting the seconds, hoping one of his life guard friends would save him, knowing he was paralyzed, and asking God if it were his will that he live, that he wanted to live, but fearful he would run out of breath to hold. What that must have been like. I just don’t know. How he had the presence of mind is a miracle unto itself. And it was so hard for me to imagine that the same body of water that provides such nourishment and refreshment to our family and to me, and that was so gently lapping at my feet as I had these thoughts, was so harsh that day, or at least the sandbar was so cruel.

 

I watched all the young children running into the waves and careening in the sand as the gentle ocean ringlet Ted around their little feet, I just wondered. And I’m left wondering. Why did this happen to Archer? What does God have in mind for him now that he has recovered, will continue on the journey of recovery living. What is it he is to discover? What may be revealed? Will he be able to choose freely and wisely to see what is there for him? Archer has so many gifts. I was sort of lost in these thoughts apparently for some time. As the time passed and got away from me, I gathered up my things, hit the button on my iphone for the time and I froze. It was 3:40pm. Where had the time gone? I couldn’t bear to get on the road knowing that that was when the accident occurred and when I received the phone call. Granted, August 5 has been top of mind all week long. But I really felt the grip of not wanting to replicate the 3:30pm getting on the road leaving Cape May and getting the phone call. The dreaded phone call that every parent prays they will never ever ever get. The crazy part is that I have to do my work. I have to do my inner work, for when I did finally get on the road, the Exit 13 thing happened. I cannot escape the irony and its God’s way to take me through the eye of the needle I think.

 

It’s mysterious to me actually the ability we are all given to live a dual life if you will, ensconced in the painful reality of the past and sometimes of the present alongside the hope that lives in my heart for the same painful now as well as the future. There are so many good things, at the top of the list of which are people and relationships, you. And, there are so many difficult things like cost and time and physical weakness.
I do feel tired. I think Archer does too. And I’m fatigued by the vigilance and constant advocacy. I feel a steely resolve to keep on going and to keep on helping Archer get what he needs to recover and thrive. There is also a prayer that the Archer Strong Team Senft is almost assembled and hopefully they can help carry on, and that includes Archer himself, now a team member and no longer the project itself. So the mission is expanding and that feels good.

 

But you know, my wedding band cracked apart and one stone, a lovely beautiful blue sapphire Billy and I picked out together with the artisan we found in Old Town, Virginia who still knew the craft of working with platinum and making a filigree overlay to match the family heirloom engagement ring, itself in the shape of a diamond with rounded corners, with little diamonds and sapphires embedded in filigree across the top, then 127 years old that Billy’s great grand father on his Mom’s side, who was a ferrier, made his wife as a pinky ring. It needed little sizing, was simple, flush with my hand, and I was honored to wear it. The predicament was finding a wedding band to go with the diamond shaped ring. Last summer in July before August 5, the engagement ring separated in the shank and we had to have it rebuilt and strengthened. This summer, just a week or so ago, almost one year ago later, the band, albeit not an heirloom, also cracked at the top. So curious. What to make of it. The first was just old? Just very worn? Or was it symbolic? What I’ve learned on this journey is that there are many signs in God’s universe. They are everywhere really. And we can make of them what we will. It’s either gloomy sign or a opportunity sign to rebuild and strengthen. I want to choose the latter.

 

Yes, our marriage has been very strained this whole year. For starters, living apart for three months then another two months, then sleeping in separate bedrooms while we take turns monitoring Archer from a new fangled dangled baby monitor that has a camera, jumping at the instant he begins a coughing fit and calls for help, is the right thing to do for Arch but it’s hard in a marriage. Especially ours where we lead such busy and now seemingly bifurcated lives and roles. But our marriage has been renewed over and over again with physical love and intimacy, one of God’s gifts. The body needs physical touch, the kind that are loving. From tender hugs to bear hugs and from pecks on the cheek to the most tender and intimate of kisses, to closeness and to unity. A marriage needs this. Whether in a marriage and whether sexual, all human beings need touch. We do. Studies of babies in orphanages, cared for with food and milk, shrivel, are stunted, and have brain deficits compared to babies in same circumstances who are held by the caregiver. I could talk a lot about this and why for instance I so love my friend who hugged me this morning, the children’s pre-school teacher, because I knew in the private pre-school setting, they would be lovingly touched and held if they fell or hurt themselves or had their feelings hurt. Our systems need physical sustenance as much as they need breath, food and water sustenance. And a marriage with two people who have not been able to provide what they usually do but are providing in crisis ways and in vigilant ways and are exhausted, it needs time together. So, I think the beginning of Year 2 will be also for me and Billy to renew, to laugh, and to dance, hopefully. Our niece is being married this weekend, we will all be together, and I am so looking forward to dancing.

 

There will be so many new chapters ahead. This year has culminated in Archer thriving. Who could ask for anything more wonderful than that?

 

And it’s been a full year and there is so much to celebrate and be thankful. Think of the intense pain Archer was in for so long. He is now pain free. Pain free. And of course, he breathes on his own. He still leaks air from around his trach, but he breathes on his own. And, this week, he was in the therapeutic pool at KKI. It’s amazing. Yes, he said he would do the water when he was ready and with the help of his team, he hit that goal for his anniversary date. Here is a video from the first time he got in the pool, his birthday. And then again today. How fitting eh, for a birthday present and then an anniversary August 5? He is working on sitting on his own with the resistance of the water and is up to a 24 seconds, and he is working on core strength in his arms so he might be able to support himself for a longer period of time when and if he is sitting on a mat on his own. Very exciting. In a few years, he may be able to support his body on a mat for a number of minutes if he continues with daily therapy. VIDEO OF ARCHER IN POOL

 

I can’t believe it’s been a full year, and our lives are also still very up in the air cluttered with so very many loose ends, medically, expense wise, another round of accommodations at home just for all of Archer’s medical supplies alone, and his pulmonary stuff etc. But I still feel so hopeful. Yes, it takes definitely more than a year, at least for us, to get settled. I’m thinking that maybe a year from February 4, 2016, the day we came home, we will be more settled. Here’s to looking ahead to February 4, 2017. I think I called our moving home Chapter 2. Well, we are so ready to move into Chapter 3 whatever it is.

 

I will share that there have been moments and days these last couple months that were a bit scary as I wasn’t sure if Arch was getting depressed or not. You see, the reality of life in a powerchair is very real, with a consequence of being limited in mobility, the ensuing isolation. And, Archer’s schedule is so demanding and has been since day 1, that his free time is also limited. So, it’s a combination of a very intense year. A very intense year.

 

We are inescapably tired, even though Archer is doing all the real hard work honestly with the PT and OT routine and the schoolwork and the artwork. For him, it’s like training for the Olympics, the Olympics for arm or leg function, and the Olympics to graduate on time, as he doesn’t want to do a gap year. For me, it’s the behind the scenes operations management, the juggling of 17 doctors and three school systems, 17 education folks who need to be coordinated, one nursing agency and the ongoing and sadly regular cancellations and no shows of agency nurses (LPNs), and the search for alternatives and healing. The alternatives include scoping out even restaurants where there is enough room for Archer to get in and seated at a table with us. There really are not that many. His powerchair is large. No complaints per se, but just reality. But we laugh and Archer said if we were in Cape May, he’d be running the kitchen at the Beach Club and grilling up a storm again for the all the members, happy as a clam, would have asked for a raise he told me (lol from the barely over minimum wage) and been very proud of whatever that wage might have been because he loved doing a good job and putting out new ideas and the menu board of what he planned to have on special each day. But that is not our summer. That is also not our life now.

 

I know it’s summertime, jobs and pools and summer vacations and family trips. But Archer seems sad, and told me so. He said no one comes over. I told him they are all working or away, just like we would have been. He shared his fear that none of his friends will want to go anywhere with him. He said, I mean, what would we do?
I was so struck.
I said, What do you mean, What would you do?
He said, Ma, my friends don’t need their parents to take them places for entertainment. We can’t go to bars to hang out. They’re not going to come here because you or Dad is here. I can’t go to their houses because there aren’t ramps and wide enough doors for me to get in.
I was so struck, again.
I felt his sadness like a sharp knife.

 

There was a grain of truth in what he shared. Like it or not, this age of high school is the age where they go to houses where there are no parents. I never liked it and I never condoned it, and told all our big kids, one at a time, as they entered the age of having a drivers license and being in high school, too young for many things, too old for others, that they should resist as it was disrespectful to the parents and family and compromised the kid’s trust relationship with his or her parents. But I knew it was happening. For that reason, years ago Billy with our son Petey, knocked out a very large brick wall in our carriage house on our lane, the alley, that divided the old carriage house into two large stalls. We had used it as a garage, more for storage, because the doors were huge wooden barn doors, too cumbersome for opening and closing for a car, but …just perfect for a cool place for kids to come, grungy and all. Pete, into many extreme sports, got the blueprints for a skateboard ramp off the internet, and he and Billy built this huge ramp. It was pretty neat. Even the parents who came to see the infamous garage over the years loved it too. The kids spent hours and hours back there skating and just hanging out. Also an artist, Pete grafitti’ed the whole place and it was a hangout. The garage, or the gaRAGE as the kids called it over the years, gave them a place to go. Billy and I were up in the house, far enough away to suit their likes. There were probably hundreds of kids that passed through the gaRAGE from honestly most if not all of the high schools in Baltimore over the years since we’ve been through the teenage years three times now and are still in them for another six years really as Dutch is now 14.

 

Sadly, the gaRAGE is no more. With the thought of converting the carriage house into a place for Archer to do his PT, last fall Billy and the boys hatcheted up the large wooden skate ramp, took down the graffiti signs and such and our contractors used it as a holding place for equipment and carpentry things over the winter when the house was under so much remodeling construction. I so wish that ramp and all the graph were still there. Archer could roll to the gaRAGE from around the block and down the lane/alley. I wonder, maybe resurrecting the garage somehow, why not. Maybe that is what we should do. A place for him to hang out with his friends, and then Dutch could have it too.

 

So, as I write that I think about the construction and I am reminded of how much was also accomplished this past year with creating a living space, a good space, for Archer here at home, at least on the first floor. Thank you to all the angels who contributed to that grand effort that took about four months of blowing up the house and management and dollars and plans and all the effort and care. It is good.

 

I am seeing that the first floor of our house alone is now not quite enough as Archer really can’t go to too many homes. But what I am also thinking about is the future that when and wherever Archer goes, he will need to be with friends who care very deeply about his well-being. Friends who protect him, and I am referring to partying, while also having great fun. It will be hard to be a senior and teenager as a quadriplegic. He and I have talked some about it. Unlike for me when the drinking age was 18 and we could have keg parties at the drop of a hat anywhere combined with a lot of kinds of fun we did, the kinds of fun that are different in a smaller town in the Midwest perhaps than in a large East Coast city, I really see his dilemma. The kind of fun my high school friends and I had in high school, if I had been one of Archer’s friends, would have meant rigging up ways to get Archer to places like the lake and getting him close enough in the van to a dock where he could be while everyone swam off the docks but still had fun together, or taking him to the country fields where everyone was having a party, and helping him roll through the dry corn fields as that is what his specific wheelchair is designed to do (well, lacrosse fields was what we had in mind), or taking him to the park where we all went sledding and figuring out a way to get the van as close to the top of the hill, or within view, so he could watch and laugh at the antics too, then everyone going for hot cocoa and diner food afterwards, or taking him to where we were building the float for the homecoming parade where he could come up with the ideas or the colors while everyone else was building it. I don’t know. I’m just thinking out loud, but that’s the kind of memories I have and I think of if I were one of Archer’s friends back in the 1970’s in Springfield, Illinois and the creativity I’d have for getting my friend the same experiences. Yes, there is also some danger there. He will need to have his pulmonary stuff close by in a van and probably a few friends trained in how to use it all. And God forbid his 500-pound power chair should get stuck or fall off of something. Yes, there are serious risks. But there always will be. He’s here in Baltimore, Mayland in 2016. I know he and his friends will figure it out. He has such good friends.

 

I think perhaps Archer’s friends may not have thought of these things yet, and heck, Archer has hardly been up for going to too many places. But that is changing. Today, we celebrate that he now can go, and as importantly that he wants to. Isn’t that wonderful!

 

So that leisure time with his friends that I know Archer yearns for, while limited in some respects it’s true, just as it is for any person bound in a wheelchair. But that is not the whole truth. The more complete truth, I told Archer, is that he really does not have to be very limited at all, with some creativity. I think he hopes his friends will believe that. Let’s see what Year 2 brings. I am sure it will be good. It’s a lot to think about and get used to, for everyone really.
Oh let’s see a few more things on this August 5 that are worth noting. Well, since Archer turned 18 two weeks ago, I think I mentioned his spine doctor had him measured again. I didn’t realize it, but the chart says he is now 6’4”. 6 feet four inches! Isn’t that amazing. He was 6’1” this time last year. So much growth in so many respects in a year. I believe that growth such as that, or even the fact that he’s grown 3 inches while in a bed and then in a powerchair for a year, surely only means good things for the rest of his body. Don’t you agree? There is movement and growth! Of course there is. And that means there is growth and neural connections being made on the inside too. His new height is a tangible reminder of what we cannot see, including as I see it, all the slime of the electrons knitting new pathways. PHOTO OF ARCHER 18th BDAY DINNER ON DECK

 

It’s occurred to me that when we, you and I, are upright on our feet for so many decades with our spines carrying the weight of our bodies, we know we shrink and actually lose a half inch or even inches in our older years through the aging process, right? We know that. But I’ve been wondering about that in reverse, that while Archer is still growing in height, perhaps his being in his powerchair all day in some ways might actually aid his body in growing in unbridled ways, ironically, without the same pull of gravity compressing his spine, so maybe that is why it’s a full 3 inches of growth this year at age 17-18, whereas maybe had he been like before, it would have only been 2 or 2.5. I don’t know. Just a thought I muse over as I search for signs of new life, like his butterfly nods in the first few weeks of injury. Gosh, we really have come such a long way. Oh my, thank you again and again for your prayer and your faith in what could happen.

 

But you know, the other aspect of gravity in his chair, as I think more about it, is that it does place him at risk for perhaps a faster moving gravitational pull to the middle, something we want to avoid to preserve the health of his organs internally. I mean, I think that happens to you and to me also as we age, so for Archer it might be accelerated. Again, I don’t know but I think about these things. He’s become very disciplined about his diet for the most part, it’s impressive. Since he was told he should only have 800-1350 calories a day, he’s taken that seriously. He said he doesn’t want to get so big that no one could lift him if he ever did need to be lifted. That’s another aspect of gravity I’d like to learn about: weight. His weight is truly like dead weight and so feels so much heavier than someone who is awake whom you might carry. Why that is I don’t know but I’d be curious. Anyway, he’s taking care of himself. I have been thinking about so many things.

 

This last chapter of Archer’s recovery, Chapter 2, has been so intense, like command central, every day. I yearn to write more but the difference in Chapter 1 and 2 is that I am no longer a captive in a hospital, which did have a certain simplicity to it as far as living standards go, and was devoid of time spent on, for instance, transportation. The time managing and living outside the hospital world is very consuming. More than I could have ever imagined as we stay committed to maximizing these 24 months in rehab and recovery. More than I could ever have imagined. My, I realize again how naïve I have been as I look back to what I thought. Like a child’s view.

 

I’ve said to myself many times, And this too shall pass. And it does. But there are times when it does not pass for a long while. Those are the harder times. The grind is real for Archer who is working very very hard, and there are the 17 doctors or providers I interface with regularly, including a new one now: Archer’s neuro urologist who will help Archer’s body with bladder spasms which are a new and frequent issue for him now, and interfere significantly in his therapy and life. It’s interesting all the barriers that continue to be tossed in his path of progress. And, as it relates to these, a barrier vicariously tossed in my path as they have necessitated a required level of care of a different type during the day. And, without that level of care, no tickie, no laundry as they say re his ongoing OT or PT at KKI.

 

Nonetheless, I like to think of these spasms as a positive sign. I mean, the idea that his body can spasm in a new way signifies to me that his organs are trying to work. They want to work the way they were intended to work, rather than the way they are being forced to work related to his paralysis. But the reality is, in Archer’s new world where some aspects of daily functioning have been reworked, and some that will need to be to stay on the path of being able to go back to school and the path of ongoing OT and PT, it means Archer will have another surgery, in patient, August 18 for a Botox injection to his bladder. Yep. That’s right. Botox. And if it works this time in calming the bladder, he will undergo this surgery every six (6) months. It will be in-patient because the injection itself is likely to throw his body into severe AD, and the general anesthesia will allow the docs tighter management of the condition. Bummer on the inpatient surgery part, but it’s part of the new normal life. We are learning that there are and will continue to be new things that come up for years in the life of a quad which are new and need medical attention and intervention, because the body is still trying to function, or if it stops trying because there is no more stimulus, then there are a host of other costly and jeopardizing issues we do not want to have happen. Quads, like snowflakes, they say are unique and fragile. And, as we know with Archer, also strong, resilient and lionhearted.

 

We’ve turned our sights this summer also to college, a bit late but feels really good to us, and to ensuring completion of what Arch needs to graduate, again, toggling between three systems: the McDonough School which is a private independent school, Baltimore Polytechnic Institute which is part of the Baltimore City Public School System, and the Baltimore City Home & Hospital Program which is how we get teachers to come to our home and to the hospital or rehab facility as they use and follow either McDonough’s or Poly’s syllabi. Since there are no teachers in the latter program at the higher Advanced Placement AP level in the summer, which is the level of coursework Archer tests into, and there is more course work to make up than is wise for him to stack into his Sr. year since we have to balance everything with ongoing OT and PT every day, we have been working since last spring on a plan for Archer, a collaboration between the three systems. Now, there are a number of people with different roles in each of these systems whom I need to interface with, 17 in all. Seventeen. I just realized that 17 doctors, 17 education people. Lucky 17. Archer’s soccer, basketball and lacrosse jersey number. 17. Anyway, Archer plans to attend McDonogh next year full time and to graduate from McDonogh. That’s a big deal decision. Archer’s decision to graduate from McDonogh was made early on in his recovery. But the decision to attend full time next year has evolved and arrived at with much input and cooperation and real collaboration, tough at times, but nonetheless a real joint effort of the three systems.

 

To facilitate what Archer needed to return as a senior with courses under his belt, McDonogh administration, as usual, has been amazing, absolutely amazing and smart and problem solving. My favorite day was when, at a big powwow that I should have written to you about in June, where I asked all three systems if we could have a meeting, in a conversation they have never had the likes of having to do before, we discussed which system would lead and take ownership of Archer as it related to many things including college counseling, SAT accommodations etc. There was a lot of discussion as McDonogh can do some, Poly can do all re accommodations. It’s really tricky. And to stay with Poly, we can re-enroll to get that but we can’t be enrolled in two schools. Good news is we can still be a McDonogh because Poly recognizes it for it’s coursework and having bonafide curricula and teachers etc. but not for a competing school for having to choose. And yet, Archer will have to choose which school should take the lead on his college letters of recommendations from teachers etc. All this is being discussed and the McDonogh Head of the Upper School turned to me and said, Louise, McDonogh wants to own Archer. We want him with us. It was a special moment. She clearly confidently and boldly made a claim, and it was like coming home.

 

McDonogh found an Honors biology course on line for Archer for this summer. He has had hours of biology coursework every single day since end of June. He talks with the teacher frequently via Skype and is always reading and taking tests and writing papers. I love to say that. I’ll say that again. He’s writing papers. Isn’t that stunning. Well, you know what I mean. He is pecking away, and quite speedily now, using the stylus as an extension of his hand, as an extension of his arm, as powered by his bicep. He calls it his One Finger. Archer’s droll wit has not changed. That One Finger, powered by his shoulders and right bicep, combined with voice command using Siri, allows him to write papers, really pretty extraordinary. His determination and drive certainly have been channeled. Lord, he is working so hard every minute it seems when he is not in his hours of PT or OT.

 

And if it’s not school, and more calculus, he has meetings at our house with his Slimeyard Slimes team, his three dear friends and older brother Dewey who gather in the kitchen or his room and strategize about how they are building a little start up business from the ground up. The non-profit Billy and I founded, ORANS, sponsors Slimeyard Slimes. Please buy your t-shirts. He started a baby and kid line and also for August 5, he launched two new designs, one a black shirt for Marylanders with our flag background, and the other a blue shirt, for Cape May. Check out www.SlimeyardSlimes.com. PHOTO OF ARCH w SNAIL PIC

 

Arch is also busy creating logo’s for the men’s club at church, a friend’s new business and someone else’s website. Someone even commissioned him to do something in their new family room over the mantel. He was delighted, but we can’t find the information on the person who requested it now, so if you are out there, please let us know. I’m sure it will surface again. All in good time. Archer Senft is on fire. Intellectually and creatively he is a dynamo, and it’s just beginning I believe. Just beginning, despite the medical challenges. Just beginning as a result of overcoming the medical challenges. And, we will leave no rock unturned on future surgeries, including stem cell if its right, or non-invasive studies using the brain and equipment, expensive as it may be. Archer has so much to give the world.

 

As for me, I need to stay focused on the day to day and the big picture for him until he takes off on his own. What the latter half of this first year has taken the most of is coordination. Advocacy yes, but coordination even more so, nurses, aids, helpers, transportation and the ongoing daily PT and OT. They changed the policy at KKI requiring a trained caregiver/parent or nurse to be present at all times for minors or anyone with a trach. That’s a cruel policy for us now that Archer is 18. But, it’s understandable in some respects. Just very onerous in others including cost and time, highest and best use time is now demanded at KKI. So that has changed my attempts at another routine significantly. But the double sting came when the nursing agency we use informed us their LPNs or nurses were not to drive Archer anywhere. They had told us it would be fine when they learned of KKI’s new policy but that to do so was up to the individual nurse if she wanted to or not. No problem, we had a few willing nurses. But then the agency informed us otherwise, just as we were putting in place a schedule that I thought might restore some sense of routine. It’s crazy because it’s not that easy to hire LPN’s or nurses through an agency to meet our real needs, especially if they are prohibited from driving Archer. We are again finding ourselves caught in the institutional gap. This situation means he is stuck or we drive and drop off and they meet us wherever that is and then I leave and then I return to get him and they go home and I drive Archer home. It just doesn’t help or make sense. And it’s either a lot to ask a friend to do, or it involves a lot of coordination with many people, everyday, which I honestly have to be careful of doing much more of, adding to command central. But the cold truth is, honestly, Arch can’t be left alone. He just can’t.

 

That said, he is so much a trooper, and I worry that in his desire to not be high maintenance, that some of his needs are going unexpressed and I think he is stoically putting up with a lot. A lot. Like, the discomfort of an itch, or needing a Kleenex or a dried boog in his nose, or having his hair in his eyes, or putting his head phones on or taking them off, or turning them up or down, or getting a tiny piece of lint or a single strand of hair out of his mouth which happens more times than not as he has to moisten the end of his special stylus so it makes the connection to the screen on his ipad, which he does by licking it quickly like you’d blow out a candle, but that sometimes deposits the problem– of why the stylus connection wasn’t working well in the first place–in Archer’s mouth. Now, I don’t know about you, but having an itch in your ear, or a dry nose or a hair in your mouth, is not comfortable, and it’s one of those small irritations that might make you go crazy. How long could you stand it? I think Archer is developing coping strategies none of ever imagined.

 

He needs this kind of help, and he deserves this kind of help every waking minute. It’s stuff that any teenager or adult could assist him with really, but that’s just it, he needs that set of hands. And then there’s the other hygiene and medical concerns of course, but it’s just amazing from a basic quality of life and function standpoint that we can never leave him alone, and, of course, it is not so surprising that he doesn’t want someone with him chatting him up all day. He wants to do his work and he needs down time, and he wants friend time, so it’s a special role for someone to play, Archer’s day caregiver. And this person(s) is something that I am constantly juggling with back ups and no show LPNs etc.

 

Since Dutch is away at camp and the big kids, just like Archer’s friends, have jobs and lives too, the house doesn’t have its usual buzz of activity this summer. So many changes. That said, Paula has just moved back home for a couple months until her new apartment lease begins and Dewey, while he lives elsewhere in an apartment, is around doing SYS during many days and both have been enormously helpful. Such great kids. I am really grateful to our kids, but they need to lead their lives too, free and unburdened.

 

So, visitors, maybe some volunteer angel sitters who can be in the dining room on hand in case Archer calls for them, and all of Archer’s friends, and maybe even a volunteer scheduler are very welcomed! Please come. And, if you go to therapy with him, you’ll see some very cool stuff.

 

I love to watch what is happening in therapy with Archer even though I also make sure to stay out of the way a lot so that it is his recovery. So for instance, today, August 5, his last day in this bout of therapies, he had significant quad impulses in his left upper thigh upon stimulation! when he was focusing on moving that muscle (that’s the key, not just involuntary spasms, but the ability to control the muscle with the mind telling the muscle what to do just like you and I do if we were to be intentional and will our finger to lift for instance). Of course, the electrodes with the electric stim can get the muscle that has memory to twitch, but that’s not significant with this work today. What is significant is Archer’s intention of the mind and muscle connection. For Archer, his right quad muscle was responding when he had that focus. I put my hand on his right quad, he focused, and I could feel the impulse myself. Very cool. It was a good August 5 in that respect and a real tangible piece of progress.

 

I’m telling you, this lionhearted kid now man is working so hard. So very very hard. We’ve no time to waste either. He sees it that way too. Even though our family’s financial needs really need for me to return to work, probably in a different way, but earning what I produced before Archer’s injury, and if so, we have a lot of planning and figuring things out ahead of us as it looks like that might not be possible at least for another year. And if and when it is, it will be because Archer has someone(s) else with him 24-7.

 

I should tell you though the neatest thing that happened. We got an email from someone we didn’t know who heard about Archer and followed these updates. He and his wife wanted to make a donation to Archer’s cause. He asked where he could send his $20,000 check and to advise him if there was a way for it to be a tax deductible. He then said he was a CEO of a company in Chicago and asked if Bill or I would consider coming to talk with his Executive Leadership Team, for an hour, about how we managed this crisis. I marveled at the creative sophistication of this request. Since working with ELT’s is a favorite thing I have done for a number of years now around negotiations, difficult dialogue and conflict transformation approaches to build stronger more effective teams, it was like a dream come true request. I thought it was brilliant. The company gets what they need and would have paid for, but they are able to make it a donation and if they want to make a donation from their own corporate foundation, it can be done to ORANS, and they can be part of the doing good for Archer campaign as the ORANS staff is helping with Slimeyard Slimes, or they can pay it into Archer’s Special Needs Trust. Isn’t that brilliant? So, I went to Chicago a couple weeks ago, worked with the team of about 16 men and talked about our Archer journey. It was stunning and incredibly rewarding when they said they were inspired and that the story had everything their company needed for their strategic planning which they then embarked on for 3 days after the talk. That company is a global $2.5 Billion dollar company. The creation of good all around the board. I would love to do more of those.

 

I want to also tell you how turning 18 in our world is enormously significant–mainly in legalities as he is no longer a minor, but this has great impact in the HIPPA world and medical provider world. While turning 18 can be very authentically empowering on one hand, it can also be very falsely empowering on the other. When Archer told me to no longer be in text contact with his friends (he was mad that I contacted his friends for a surprise birthday party because he has friends in different circles and he thought they felt awkward all being together. I told him, Ok, I get it but that it might be good for them to be together and expand their repertoire a bit. He said, it doesn’t work that way, Ma.) He then said he could take over his care now that he was 18.
I said, Ok. Are you sure?
I must confess, that on one hand, I was hurt. On the other, I thought it was typical teenage stuff, and yet on the other, I felt it could be quite good to bump up the level of responsibility Archer can have for his own care and ownership of that care. I bit my tongue and in my most mediator-like relational thinking, I said something like,
If that is what you would like to do, you are 18 and you can. I can give you the list of the 17 providers, the nursing company, the 17 school admin folks who also need coordination, and the two pharmacies for ordering and delivery of your medical supplies. You will need to direct someone to tell you what is upstairs in the medical supply room. We are also still in process with a lot of Durable Medical Equipment DME purchases and insurances and the distributor for your powerchair adjustments. I’ll send you their numbers and his text number and when something doesn’t work, you can call and arrange for the tech. And, I’ll also give you the info and contact info for the companies whom I interface with for the FES RT300 bike KKI says you need, and how you want to raise the money $26,900 for it. If you want to also take over the construction accommodations for Cape May you can too, although that’s not medical, but you could take over the orders for DME for Cape My, I’ll give you that info too. And as for your alternatives, I’ll text you the numbers for the reflexologist, the acupuncturist and the massage therapist so you can schedule those appointments. There are about 4 companies I order your nutritional supplements from and I’ll get that to you as well. And do you want the numbers of the doctors I am contact with for stem cell and the other research doctors? Or the testing companies and the other three spinal cord hospital and research centers I stay in contact with? Do you want to work with the friends who want to help with funding who need information? Or would you also like to take over the ongoing construction with the not yet finished medical supply room up on the third floor?

 

I said this or something like this in my best, without any edge, because I did not feel the edge, but as I rattled off the list, I realized how absurd and preposterous it must have sounded. It was all true. And then some. I wanted him to know he can do any part of it.

 

I then said, And Arch, your OT and PT is a daily management piece too and really, the nurses from the agency are your employees and you can talk directly with them and deal with their no shows etc. but more importantly, do the training of them yourself.

 

I paused and then said, Do you want to take over all your medical decisions and care? Because it is a lot. And by the way, Dad and I don’t expect you to take over but would help you if you wanted to. Or any parts of it. And honestly if it were too much, it’d be ok to say so, and I’d do it for you, at least while I can and you are here because I love you, and, I told him, I love you and I love doing these things for you.

 

It was a real moment. It was a cathartic moment and a freeing moment for both of us. He looked at me really hard and said, Thanks, Mom, for all you do.

 

He then said, I’d like to be the one who decides the OT and PT and the nurses and school but have you do what I can’t do very well.

 

Isn’t that beautiful. It was so real. I was very proud of him. So I feel we are in a new chapter of partnership.

 

And I’ll tell you briefly about our meeting Archer and I had last Friday with the OT PT team at KKI and his spine doc, a meeting called by them to discuss the plan for the rest of the summer and for the school year. It began with their saying, So Archer, you are 18, who is running this meeting? (no warning by them to Archer or to me, at all) It was a moment of pregnant pause. Archer was ready. In his inimitable way, with the hint of quiet self-consciousness, Archer said, Well, I guess I am.

 

And he did. Archer ran the meeting and I was very proud. He was a natural. It was such irony as it is I, as matter of training as a conflict transformation facilitator, to ask a gathered group, Who is running the meeting? If no one, then I will. Here, before I could ask, they said So, Archer…. It was priceless and it was so perfect. It felt really good to see him taking charge in his even and thoughtful way, and truly collaborative. And we made a good team he told me later.

 

There was a point though where the therapists said that the 5-7pm OT PT slot for the fall, a coveted time for OT and PT, that I had requested that Archer be placed on the waiting list earlier in the summer and was told it was likely he would get one of the spots, wouldn’t work because Archer still had in his tracheotomy and they would need an RT (respiratory therapist), and the RTs do not work after 5pm and so that was just a fact.
Archer nodded, I waited.
He then said, Well, Ok, so if I can’t do aquatic therapy this fall, will I be able to do it next spring? (it was that kind of black and white, in or out consequence kind of exchange).
The exchange hit a nerve in me. I looked at Archer and asked if I could intervene for a moment. He nodded consent.
I turned to the therapist and asked, For clarification, did you say you removed Archer from that waiting list for those 4-7pm slots?
She didn’t answer me directly and went on to talk about the time slot 4-5pm. That made me mad too.
I asked again, Can you just tell us if you removed Archer from the waiting list or if he is still on the waiting list that we were told he would likely move off of and have a spot?
She was uncomfortable.
I continued, I hear that you think he would not be eligible for the time slot because he has a trach, and you may not have considered that he has a trach now but he may not in the fall, right? Nor did you consider that we might hire an RT to be with Archer, right? Can you please tell us if you removed him from the list or if he is still on the list.
She said, He’s not on the list.
I was stunned.
I knew that is what she had done, but I was still stunned.
I continued, Did it ever occur to you the level of coordination that it takes for a family of a high schooler, or any child perhaps, around times and schedules with full time school? And the level of coordination in Archer’s case of many complicating and intersecting factors? And the level of coordination that is beyond just those seated at this table, but other systems of people who have to move schedules and locations so that it all fits together?
And she said, Well, if Archer wanted to come from 4-5pm 2-3 days a week (because they do either T, Thurs or M W, F slots) he could.
Feeling my anger, I said, But I thought Dr. S, our spine doc who was sitting right there at the table too, just said Archer needs a minimum of 4-6 hours of OT and a minimum of 4-6 hours of electrical stim a week? And I thought I heard you saying you also recommended time in the therapy pool? And now I’m hearing you took him off a list and that you can’t offer him any therapy past 5pm because you all go home and you can’t offer the pool because they all go home and you can only do one or the other in the 4-5pm time slot. Right? And I thought I also heard you agree with us that our effort in driving down from school and the time it takes for set up for whatever OT methodology is being used that day would not be worth the 60 min slot because he would essentially be getting only 45 min of OT when all was said and done, so that means he would be getting 1.5 hour or 2.25 hours a week from what you just proposed coming 2-3 times from 4-5pm, Right? And you unilaterally without our permission removed Archer from a list we have been counting on, coordinating school time around, and his school administrators are coordinating time around, without our permission, without his permission. What do you mean he can come for 2-3 sessions a week? That just won’t work.

 

I was mad. I continued, He’s here with a need. You are here with a service, we’ve been here for months, Dr. S is his main doctor running the show for us and she runs this entire place, and I looked at Dr. S, and I said it’s BS if he is going to get caught again in another institutional gap with policies that do not serve the core need which is to help the patient and go against your own recommendations. We cannot settle for that. We can’t. We won’t. We are not screwing around with this recovery.

 

I continued, Archer has one year here, all of us together, to maximize for the most benefit and for his future, and we are not going to just have 2 to 3, 45 min sessions because we were taken off a list where we could have gotten what he needs and that assigned staff that we never asked for goes home at 5pm. He needs the requisite number of hours a week in therapy according to the research to enhance his chances of recovery. Isn’t that what all of this is about? Recovery enhancement?

 

With that, his Dr, whom I really love, turned to her staff and said in her distinctive Romanian accent that I like so much, Are you saying you cannot provide the 4-6 hours he needs of OT? He is a Sr in high school and will go off to college in a year, this year is critical. He’s going to have a miracle. We have to do our part and provide the therapy.

 

I was stunned at what she said as I had been as stunned by what the OT had said. But this kind of stunned was stunning. What an advocate we have on our team, that she was saying to her team, Figure it out.

 

I looked at Arch and he looked at me. It was a moment. It was breathtaking.

 

What then followed, with a bit of a quivery beginning, was another round of discussion that was much more creative and problem solving. It was great. And then, Archer said, Maybe I could summarize where everyone is on my therapy program.
Everyone stopped and listened. And he nailed it. He was steady, even and thorough, and he had a quality of fairness and groundedness that was solid. He spoke just like a transformative mediator. It was amazing. And I felt a part of myself restored. Like I didn’t have to do all the advocacy and the mediating solo. So, it clicked. And it was a welcomed relief.

 

We later talked about it when I told him how proud I was of him, and he nailed it again when he asked me to continue as his advocate or watchdog, or watchful owl. He told me he can run the show until the show tries to run him. We created our own guidelines that I’ll ask him if I can step in when I think it’s needed, and then I’ll defer back to him once it’s stirred up enough to generate some new thinking and some options. It was a great day, and it was a new beginning.

 

So here we are today, August 5. He’s come such a long way. Labeled as a respiratory failure and a ventilator failure by the first two institutions, told by both he should live in a long term acute care facility, and also told by the pediatric pulmonologists at JHH in the PICU that he simply “would not be coming off the ventilator, and we should prepare for many months or years”. He wanted to breathe. He was intentional about wanting to breathe. You were intentional about his breathing, and about your own and you sent that energy field our way. And now he is not only talking, he is running his own medical meetings. And, breathing beautifully on his own, ok still needing some pulmonary toileting as they say, but the blebs are gone. No trace of blebs. Nothing. The before CT chest scan of 11-2-15 at Piedmont Hospital/Shepherd Center and the 6-16-16 CT scan at JHH. The scientific data for what we will call another of the Creative Miracles. We pray and give thanks for the finding the right doctors and care team of believers for Team Senft, and for their saying yes. And most importantly, your prayers. Signs and proof of what together we can do when collected and intentional in thought and spirit, believing and relying on God’s deep love of each of us and his mercy. It is the year of mercy. PHOTO HERE OF LUNG CTs

 

And a few more things to share with you for a lovely ending for the first year. We went back to Cape May one more time after Memorial Day with Archer to experiment with what else we would need so that we could return for an extended period of time, a week of vacation with Archer. I miss very much going on a regular basis to Cape May. I almost need to go. It’s the first time in 10 years I haven’t gone every weekend in the summer. The peace and simplicity and restoration of what Cape May has provided to our family and our busy lives in Baltimore is missed, and I will look forward to recreating it in some way for 2017. As for now, 2016, it’s a summer of planning. One step at a time. So, with Archer’s input, I think we have a plan, and I have gone back twice for day trips to work on arrangements with contractors for accommodations for Archer. Some of you have asked what we could do and we had a ceiling Hoyer lift installed a few weeks ago, a hospital bed delivered this week, and a concrete sidewalk put in as a starter to get Archer at least up to the house. We’ll use makeshift entry ramps until we figure out our front entry which is a bit more complicated with the area he needs to pivot his chair easily and a barrier of a current set of brick posts that are in the way for that, but that construction can happen this winter. It’ll work with a makeshift ramp from Wal-Mart ironically, but not with a more permanent ramp, but we will figure that out. The important part was for Archer to get to the house and into the house, even if awkward, and also to know he can egress out of the house and not feel trapped, not that he would, but you know what I mean. I want him to have the life he wants and the independence he will seek in time. Everything changes when you feel confined or don’t have options it seems to me, and learned helplessness is a real phenomenon as I recall from psych 101 at University of Virginia, so I want him to always know he can go and be free and live life. When they poured the concrete sidewalk/ramp to the house from the road the end of June, and before it set up completely, with a twig from Archer’s tree, which by the way is thriving, I wrote, Begin Again 2016 at the end, or at the beginning, depending on whether he is going out or coming home. He is beginning again, with your prayers and a wonderful amazing medical team. Yes, it’s been a slow recovery and will continue to be perhaps in many butterfly movement respects. Archer’s snail motto for www.SlimeyardSlimes.com is certainly not an accident. The subconscious mind is strong. Slow but sure. And the way Billy and I see it, it’s a go slow to go fast process. PHOTO OF ARCH w SNAIL BY COUSIN

 

This week, again, the energy of this week has been unbelievable, produced an article in the Cape May Herald newspaper about that sidewalk and Archer’s progress. It was such a nice surprise. Front page even. PHOTO OF HERALD FRONT PAGE ARTICLE You can read it at www.capemaycountyherald.com.

 

Another nice surprise when I returned to Cape May a couple weeks ago to meet a contractor, was what greeted me. Some one in Cape May had chalked a birthday message to Arch on the sidewalk we had poured. Don’t you love it? It’s so beautiful and thoughtful and fun. I really loved it. PHOTO OF SIDEWALK BDAY MESSAGE.

 

We will return again for a benefit for Archer in Cape May to help us with the home renovations and additional pieces of Medical Equipment. Come join us if you want a very pleasant restful and restorative time in Cape May next weekend. Where: the Beach Plum Farm in their newly constructed barn with the herb and flower gardens and veggies and outside picnic tables with umbrellas surrounded by the ease of simple and elegant working farm, Sunday, August 14, 4pm-7pm. Rain or shine, lots of live music by friends Kate Delaney Chew and Ric Rutherford, formerly of the band I love so much, the Cape May Diamonds, and the Bastard Boys who have an awesome drummer, who is the son of other close Cape May friends who shared the same surfing beach with our boys, and fabulous food donated by the I don’t have to tell you amazing restaurants in Cape May as we are known for our good food on the island, and of course drinks and libations and loads of silent auction items like weekend stays and week stays in Cape May homes, seasonal beach box, beach cruiser bike, spa, restaurants, Exit Zero merchandise, you name it, the merchants and residents of Cape May have been very generous. Tickets are only $20 in advance, $25 at the door. All donations can be non-taxable if you go through one of the sponsors, www.DeSatnickFoundation.org with all donations made now until August 14 given to Archer’s Trust Fund, the foundation was founded by an old acquaintance, Chad DeSatnick, from our days at Queen Street beach and is focused on spinal cord beach injuries. An afternoon of unity for Archer. PHOTO OF INVITE FLYER

 

It’s really been an amazing week and August 5. I do however, have a piece of news that has shaken me up but we will overcome this too. Remember how I told you this morning I was leaving Mass and headed to JHH for a doctor’s appointment. Well, I just spent three hours at JHH, not for Archer this time, but for me. My optometrist and I have been trying to figure out the issues with my eyesight that has changed quite dramatically and also with the grittiness I feel with my hard contacts, and so on. It started in the hospital but I just couldn’t leave Arch and it was easy to put off until later. Well, I’ve known now from his battery of tests that I have macular degeneration. It’s been about 6 weeks since the first test. He shook his head and said he didn’t understand how because I am so young for that eye condition. Can you believe it? He said it was Macular degeneration and showed me the films of my eyes. Thanks to working relationships, not because of Archer this time, but with JHH as a Baltimore Mediation client of ours (can you believe my team is the facilitation and design team for the integration of the two campuses at Hopkins, all this while side by side with the Archer situation? I know. It’s nuts. And it’s true. And the project began just weeks before his injury and I’ve lead it all year, with some days that were pure surreal to me.) Anyway, I mentioned to one of the execs on Wednesday night that I had this diagnosis and she was horrified and said to look for a call in the morning from one of the leading retina and Macular Degeneration experts in the country and I suppose the world, at the Wilmer Eye Institute. Sure enough, I got the call and I was in to see him in 24 hours. So, that’s where I was headed when I left Mass yesterday morning. His amazing staff told me, as I arrived and he literally escorted me personally right through all the wait and barriers, No one really in their 50’s has macular degeneration. Don’t worry he said. Dr. H will have all kinds of tests performed today so you won’t have to wait or come back to find out, and that when we finished all those tests, the doc would leave his conference and come look and talk with me.

 

And that is what happened. The tests by the way involved many pictures of my eyes and very bright lights, and a dye injection into my entire body that was phosphorescence and made me a little jaundiced which they said would last a day or so, and queasy, and the tech warned me and gave me a tub to throw up in. Thanks to his warning and deep breath work though, I didn’t throw up thankfully but the shock to the system was unmistakable. And they did some other movement tests. So, when all the results came back on the computer, literally by the time I was escorted back to the eye doc’s office, there he was waiting and we spent about 45 minutes or longer going over my situation. I felt blessed to be there in the care they offered. He began by telling me I do have Macular Degeneration, and it’s in the intermediate stage. Oh my God, please do not allow my body to go blind. Just to write that is hard. I felt the hot tears but I listened intensely and they never dripped from my eyes. He had much to tell me as we went through all of the computer images, and I had much to learn. Not early stage but just over the line he said into what they would classify as intermediate. If it gets worse he said and moves from dry to wet, there are surgeries. That was comforting. But he looked at me and said, I don’t even have many patients in their 60’s who have MD. You are young. Only 55. This is stress related.

 

And so, I guess that even with eating well, working to not be in excess in food or drink, but definitely in excess in lack of sleep and erratic sleep, yet daily prayer, keeping our family together while we struggled through this and maintaining a minimum of office staff to keep us going, was not enough to bring me through the last year unscathed. The erratic sleep, not so much the lack of, although that is probably a contributor as well, but the erratic 2 hrs one night, 4 hrs the next, an all-nighter or two (on another matter I will tell you about later), 7 hrs the next over time doesn’t help he said as he explained that there are cones in the eye that need to be sheared off with every sleeping as part of basic eye garbage clean up duty to keep the eyes functioning, and they have not had time to do the clean up necessary and do they have produced drews. He showed me the drew. He likened it to throwing the party (what the eyes do for us every day) but the necessary clean up afterwards because the party produces a lot of garbage, and without the requisite period of time to do this, or periods of enough time, to do all the clean up that the eyes have to do, the eyes can’t then do what they are supposed to do. I get it. The constant vigilance. I am so sad about this. I do not want to go blind.

 

I will not go blind if we manage it well now. I will also find other gurus familiar with MD in the spiritual and medical arenas to help me think and live outside the box on this. I spent time on the phone right away with two. Maybe I will share with you at a later date some of that work, but for now, I’ll share that I will need to eat fish of all kinds 3 x week and broccoli sprouts 3 x week and lots of green salads which should take the place of fatty red meat or any other fatty or fried foods, which is not really my issue, but I do love steak and all meat, so I will cut back on that. He warned that it’s a balance and not to go to overboard in one direction either, as the studies that he and JHH participate in show that for MD, you can make a difference in the right amount of fish and greens. Interesting. And he told me to get the formulated nutrient supplementation specifically for macular, AREDS 2 prevision formula. And, as he looked at me with his kind eyes, his white lab coat wrinkled at the waist, his hands loosely resting on the arms of his chair, his legs casually crossed, and leaning in every so slightly, engaged, as if we were having a conversation about interesting things in the news and opining how to solve the problems of the world together, and he told me most directly, You must find ways to change whatever it is in your life that is causing this much stress.

 

That made me laugh softly. And then I could feel the tears, the hot tears beginning. I held them back with more breaths and listened further.

 

He was thoughtful and wise and handsome and his expression was… I don’t quite know how to describe it. I mean, I recognized it, it was kind, but it was more than that …. Compassion maybe? It wasn’t pity exactly, no nothing like this. More a what have you done to yourself to have this happen kind of thing. It wasn’t judgmental. It was just a deep caring I think.

 

I was really moved. What we search for, like a needle in the haystack sometimes it seems, in the land of milk and honey and abundance of medical talent and expertise, is caring. We look for the physicians who care, for Archer and now for me. I felt he did.

 

It’s extraordinary to me what happens when professional services are provided by people who care. I have always wanted to care deeply about my mediation clients. And I hope I have because that is such a chief feature of transformative work.

 

From the lowest level of medical agency caregivers to the highest towers of medical research and knowledge at JHH, the difference in those who care and those who do not is what makes the difference in healing, progress, and the potential for restoration. And care is the foundation for hope.

 

So, I am grateful to have had that experience today. What a marker and irony, August 5, for me.

 

While the impact of Archer’s diving accident has paralyzed his body and the bacteria of the seawater has ravaged his lungs with an outcome of a lot of debris and blebs, he is recovering and indeed his lungs have shown a miracle. So too, the impact of the accident has paralyzed my livelihood and the stress has ravaged my eyes. I too will recover.

 

Like Archer’s snail, it might be slow but it will be steady in a positive direction. I will clear out the debris of our house and my spiritual house so my forward vision can be clearer. I hope to not have to focus so intensely and constantly and vigilantly any longer as we are out of the woods on life and death I trust. I really think I have been on high alert, suspicious even, of what was all around coming at us from the side, lurking in the corners if we don’t notice or clean them. I have had sharp and keen peripheral vision for sure these last 12 months. But it’s about the forward vision now, a focus on forward, with a gentleness and which will include rest.

 

There are certainly metaphorical and spiritual life maps for me in this diagnosis. I have work to do for Archer and for myself in a new regimen of outside caregivers. And I have rest to do. (Oh my gosh, I can’t believe I just said I have rest to do. To do. For those of you who know me intimately well, that should make you laugh.) But in the midst of grand central, there can be rest and there will be rest. And, I have a partner of sorts at the command center now, Archer at 18. While Billy remains a constant provider of the nightly care monitoring as he does from the baby monitor, the command center of medical needs coordination and strategy for future progress can be shared with Archer now. And shared in a way that he will take over in time. It’s sort of a legacy goal I guess, humorous, but about all I’ve got to pass down at the this time.

 

I need to work on that lingering taste of bitter root that is still in my system hiding somewhere as it comes up my throat like bile from time to time, yes, the ravaging effect on my body of having to sell my building, our insurance running out for what we really need which is home nursing and OT and PT, and having no services covered after 30 days even with the best policy under Obama Care, scrambling for SSI, scrambling for services, working with bureaucracies, working to get Archer onto the Model Waiver while still a child, even if only for a short time, and the constant unrelenting management of nursing aids in what seems is our only available and affordable option: unreliable regular no shows and cancellations, unmotivated often grunting unintelligible people telling Archer he is so heavy or so hard when there is nothing he can do about his paralysis, often unskilled aids refusing to do basic needs for a quad because the needs are unfamiliar and they say “he talks” rather than presents with brain damage, and they can’t get their heads around that they have a very intelligent regular young man to care for, and they whine to their supervisor who then tells me that they want longer 10-12 hr shifts but not at our house because it requires too much work having to help get Archer to bed as well as up in the morning, and mainly uncaring home nursing aids who leave our home not only untidy and more to clean up—with soiled laundry left out and medical wrappers and supplies and equipment left out rarely put away—but also a feeling of degradation for Archer. I just can’t have this any more. There are a couple of exceptions for whom we are most grateful, but 2 gems (60 hrs) in a week of 168 hours of need where most of our need is from 10pm to 9am, leaves many gaps.

 

I will find rest and Archer will find restoration somewhere in 2016-2017, but Archer and Billy and I know we cannot have a nursing/personal needs situation like we’ve been enduring continue for Archer moving forward. What Archer really needs is a butler type of help, a driver, someone who is there when he needs him and not there when he doesn’t.

 

So that will be what we tackle in the next anniversary year. The first year was getting the right medical providers onto Team Senft. Getting the right nursing and caregiver folks onto Team Senft and tackling the costs will be the goals for this first part of the new anniversary year.

 

Yes, I guess the wear and tear of the year had to find some place to manifest, but of all things, in something so precious to me, my eyesight. Please pray for me too this year. I know you have been. Please pray with an intention that I will not lose my eyesight before I am a very old lady. That I will see Archer walk and that I will see my grandchildren and that I will see my clients and the audiences where I want to speak and train to be able to do the work I know I am called to do, and that I can continue in service to my family, rested.

 

The other and last thing I want to share with you on this one-year anniversary day is about a most remarkable thing that happened Wednesday day. There truly has been a lot of energy in this week. I got a call from a lady to whom Dewey took two of our five kitchen barstools for repair. The boys had been hard on them over the years, leaning back as they do, and pieces of the handmade seat frame had broken. I knew the seats too were in need of reweaving. They were rushed seats woven with natural rush reeds.

 

It took a while for me to locate the artisan weaver who could repair them here in Baltimore. And it had taken me awhile to decide if it was worth the cost of repair, which was more than double the cost of the chairs to begin with. I had spoken with the weaver and she noted that I should look for replacements but if I was not successful in finding replacements to call her back and just let her know if I decided to bring them over. She lived across town. We say things like that in Springfield, Illinois. What I should say is she lived about 20 or so minutes away. I looked on the internet (this is like a year ago when all this happened) and couldn’t find anything similar for replacement since I still had the three in the kitchen. Since the cost for weaving was high, they sat in our basement.

 

During the first wave of our house accommodations and renovations for Arch, the broken chairs which had been put down in the basement were in jeopardy of being thrown away in their broken state. For some strong reason, I would not allow Billy to throw them away. He asked me from Atlanta again if he could pitch them and I said, Please don’t and please don’t lose all the little pieces of wood that are resting on top of them because they go together. By the time Archer and I were flown from Atlanta to KKI and we were home in Baltimore and my project manager angel friend and I were focused on house renovations, I found the chairs and I called the weaver again to refresh her memory and to let her know I was biting the bullet and Dewey would bring the chairs to her. He unknowingly left some of the pieces of the broken wooden seat behind. She called to tell me some of the pieces were missing and that one of the chairs was not able to be repaired. I knew I had saved the pieces. The big kids searched in what was now a basement full of stuff from the side of our house under construction. They found the pieces, and Paula drove them across town a week or so later to give to her. That was in late November.

 

It was winter when the weaver called me to tell me that even with the pieces, the one chair was so broken that she wouldn’t be able to put it back together and weave the seat without the frame being reconstructed. I asked her whom she might recommend to do that. She said a furniture repair shop in Timonium. I asked if there were any way she might call them since she knew them and knew what was needed for repair to see if they could do it and the cost. She agreed. Frankly, its about at that point with some projects that once it moves into a lot of phone calls to locate and get back to people, etc. the crisis of our world and what is more important quickly clouds the screen and many things are left dangling for weeks and months that are not the highest priority as there are truly not enough hours in the day. So, I was so grateful she agreed to make the call.

 

She called me later in the spring I think to tell me that they were out of business or that the quote she got was too high she thought, one or the other, I cant quite remember but I do recall she said she had a brother, a carpenter in Virginia, whom she spoke with about it who said he could do the repair. And she then offered me his services. I thanked her and said, Yes, let’s proceed.

 

She called me one last time to offer me the idea of a manmade rush fiber for durability and I said fine. That was around Mother’s Day.

 

And then my phone rang Wednesday, two days ago.
I could see her name on the digital display. I had to think of who it was.

 

I picked up and said, Ann?
Surprised that I called her by name, since we didn’t know each other really, she said, Why yes…
She told me she had tried to call me a couple times (on our home phone) about the price. Oh I’m so sorry, I said. I explained that I hadn’t returned those calls because I hadn’t actually received those calls, I was a bit embarrassed to say that but it’s true, since we don’t have a working home phone line, even though you can call it and the answer machine still works. It’s weird, but it was accidentally cut in the construction, and I haven’t had the time to get anyone to diagnose it and fix it. Just not high on the to do list. I didn’t tell her that of course, but I did apologize.

 

She said, Oh that’s Ok, but I wanted you to know that we just went ahead and did them and they came out Ok. She told me the total cost and explained what her brother had to do. I asked if he also was able to paint the new constructed frames that red lacquer, and she said, Oh no, he said there was no way to match that color and sheen but he also said he didn’t want to add any new pieces to these nice chairs so he used all those pieces you had and redoweled them.
I said, Wow, that was very kind and showed a lot of care. Thank you.
She apologized a bit for the total price, it was expensive, but for all that it sounded like he did, it was also all very reasonable. She said she hoped it was Ok. I thanked her again and acknowledged that it sounded like he and she went to a lot of trouble. She said, when you come to get them, just bring your checkbook, don’t write out the check, but just bring you check book and you can write it here. Ok, I said, why is there a reason I’m not going to like them? There was a pause and then she said, very tentatively, Well, there’s one more thing.

 

I said, there is?
She said, I had wanted to get the chairs to you by Friday (August 5) [she has no idea about Archer and certainly nothing about August 5]…
She continued, But when I finished weaving and I put on the lacquer finish this week, in one of the chair seats, there appears like, well, it’s like a cross.
There was a silence.
She continued, There’s a cross in the weave. I wanted to talk to you about it and let you know if you want me to get some stain and try to mottle it so it blends in, I can do that, but I wanted to tell you.
I asked, A cross? What do you mean?
She said again, Well, it’s weird. Well, it’s just like… I can’t really describe it any other way except that in the weave is a cross. And I used the same spool of rush for both.

 

I asked if she could take a picture of it for me and text me. She did. I told her a about Archer and that I believed her it was a cross. PHOTO OF CHAIR
Check it out. It’s quite remarkable isn’t it?

 

Yes, it’s definitely a cross. I texted her back and said, I love it. It is a sign. Archer will sit in that chair someday. His anniversary of injury is Friday.

 

I showed the picture to Archer and told him about the call. He nodded slowly and very matter of factly, like a quiet assent.

 

I went over to meet her as we had never met before and to get the chairs. We sat at her table. She began by telling me she was nervous to talk with me and wasn’t sure if I would be receptive. She told me she had no way to explain this, that it did happen once before with two little old ladies who were thrilled as they had someone very sick in their family as she recalled and they exclaimed over and over that it was a miracle. But that it certainly was weird. She repeated this again. But it’s happened again and I don’t have any way to explain.

 

I smiled and said, It’s happened because you are a chosen messenger, you are the instrument whom God chose to give us the sign.

 

I really felt that. Her brother a carpenter and she a weaver.

 

She was very earnest and leaned in and asked me, Is there something that you have been told cannot happen but you believe can? I said, Yes. That our son will walk.

 

She said, well, when I am weaving, I listen to all sorts of things and when I was weaving your chair, I was listening to the Secret. Have you heard of the Secret? Well, if you believe something and have the right intention, anything can happen. And when I saw that cross, and I just happened to be listening to this CD called the Secret, I felt there was a connection and I wanted to talk with you. (It made sense to me then why she insisted I bring my checkbook with the check not yet made out. She wanted to talk with me.) I told her about Archer and about our faith and our prayers and our belief that he will walk. And, she covered her mouth in astonishment and then she said, He will sit in that chair someday. It is his chair.

 

I said, Yes, it is. I thanked her and told her I believe in all kinds of mystical things that are good and part of the universe God has created, including those things that are a mystery. And I told her I don’t have to understand, I can believe. She smiled, her silver white hair and her twinkling eyes. She was wonderful.
I asked her if I could see where she worked. We went down in her musty old unfinished basement, which brought back a flood of memories for me of being in my grandmother’s basement playing school and house and having hours and hours of fun with my cousin. There was her weaving table, and there was her TV screen. Just as she had said. I asked if I could take a few pics and I did.

 

This sweet little weaver was a messenger for me, an angel, another manifestation of God’s majesty and mercy.

 

That is Archer’s bar stool, and it’s waiting for him.

 

The next year is waiting for him. Begin Again 2016.

 

So, in closing, Team Senft has done well. And who knows what is next. We trust in God. I envision the arms of Mother Mary around us, and I see Archer walking. We know of course that in many ways, he already is. We also know there’s really only been one choice point: to move forward or not. We choose the former. One foot in front of the other, one moment at a time. We are choosing to see and envision clearly a bright future, with rest and more laughter and more dancing and more writing, one of restoration. And the restoration is not in the longing as much as it is in the now.

 

I know we will be taken care of. God’s manifestations are abundant. He gave us you this past year. Please do not leave us. Please keep praying when and if you think of Archer, please make a hopeful and specific intention that he will have the use of his hands and that he will walk, and thank God for us. And thank God for all your blessings. They are everywhere.

 

My teachers have taught me to allow my breath to carry me, which is not an easy thing for me without a commitment and focus on rest. I want to learn to rest in the moment, to feel my eyeballs cradled gently in the velvet backs of my eye sockets, to restore the place where stress has ravaged me.

 

God bless you all today, in each breath you take, any holes in your life that may need care and attention, breathe life and love and forgiveness into them. We love you so very much. God is so good. If you can, please say your favorite prayer for Archer today. If you can, please ask Fr. Bruno Lanteri for intercession, to pray for a miracle of complete healing and restoration so Archer may begin again. And, if you are inclined, please say a Rosary. Just google Rosary.

 

So, on this anniversary of the injury of our Archer the lionhearted boy, now man, let’s gather together and say the Creative Miracle prayer together:

 

God of all creation, you who spoke a simple command and brought forth light from the darkness, I call upon you now to send forth your miracle-working power into every aspect of Archer’s being. In the same way that you spoke unto the dust of the ground when you created humankind in your own image, we ask you to send forth your healing power into Archer’s body. Send forth your word and command every cell, electrical and chemical impulse, tissue, joint, ligament, organ, gland, muscle, bone and every molecule in his body to come under complete and perfect health, strength, alignment, balance and harmony.
It is through you that Archer lives and moves and has his being. With every breath Archer takes, he/she lives under your life-giving grace. We ask you to touch Archer now with the same miracle-working power that you used when you fashioned him inside his mother’s womb. As surely as you have created Archer in your image and likeness, you can also recreate him now and restore him to health.

 

Please fill Archer with your healing power. Cast out all that should not be inside of Archer. We ask you to mend all that is broken, root out every sickness and disease, open all blocked arteries and veins, restore his internal organs, rebuild his damaged tissues, remove all inflammation and cleanse him of all infections, viruses and destructive forms of bacteria.

 

Let the warmth of your healing love flood Archer’s entire being, so that his body will function the way it was created to be, whole and complete, renewed in your perfect health. I ask this through our Lord, Jesus Christ, your Son, who lives and reigns with you and the Holy Spirit, one God, forever and ever. Amen.

 

Amen.

 

Sending love

 

 


 

 

Friday, August 5, 2016
Archer Senft
Family and friends update
August 5, 2016 DAY 365

 

Well, today marks a major anniversary for Archer. And for our entire family really. And I suppose for many of our friends. And we count you among them. It’s been one year. August 5, 2015 when Archer’s life and ours changed in a moment. One blink. One dive. Gosh, it’s so hard to believe.

 

I just walked out of morning Mass, and on my exit as I scurried out because of another early morning doctor’s appointment, an old friend, the kind of old friend that goes way way back to when the children were young when she gave our family so much love as one of the children’s preschool teachers, was just there. She appeared from around the corner with her arms outstretched giving me one of her motherly hugs, I am sure the same kind of hug that she gave each of our five children when they were three and four years old. Isn’t that amazing, I just fell into her arms.

 

So,I am full of mixed emotions. Today, where I’m going now. There is only one thing I know for sure really and that is that God lives in each one of us. She was my angel this morning. A perfect manifestation of God’s goodness.

 

I am so grateful to each of you. And I will post later today as I am swimming in the tide of life and in thoughts and feelings all around me. I imagine you might have some feelings as well. So please check back in as I will post later. Promise. Until then, please say a special prayer of healing for Archer on this day and please pray for hope. For us and for yourself. Hope. It is so powerful and comforting.
I love each of you who keeps up with us. Thank you.

 

Sending love

 

Amen

 

 


 

 

Sunday, July 17, 2016

 

Archer Senft
Friends & Family Update
Sunday 7-17-16 DAY 347

 

Miracles do Happen

 

It is true.

 

On Thursday while at an appointment with our neuro spine doctor, which, in Archer’s case, means a number of hours for a complete physical and check-in for just about everything, we learned something interesting that lead to a most remarkable thing.

 

I should first preface this that Archer and we are so grateful for our neuro spine doctor. It is a story of, well, choosing each other, as the relationship began while still in the hospital when she would breeze into KKI in-patient to see how Archer was faring. She told us then to hang in there and she would be waiting for us when we got out. And she was. She deeply cares about Archer and we know it. There is a true kindness in the way she goes about being Archer’s main doctor. She is not actually Archer’s primary doctor, as those shoes are filled by our internist, another angel for whom we are also so grateful. But she is our main doctor even though she travels extensively and is involved in many other admin and research efforts as the head of the International Spinal Cord Injury Center. She is remarkable because she is always available for us, responding to our emails no matter what part of the world she is in. We know it is a special relationship, and we feel quite close to her in many respects. Besides being brilliant and wise, she is also a natural collaborator and leads with her heart. So the Archer Strong team is very solid, and we feel very blessed. In fact most of the 17 medical specialists fit the criteria: believers, competent, caring and responsive. And even though it’s a full time job coordinating and interfacing with Archer’s team of 17, plus their staff, on a daily, weekly, or monthly basis and keeping them informed and up to speed of the other, it’s comforting to know that we have the right people on the bus.

 

So, when we get our face time with Archer’s spine doc, it’s quite extensive. So, prior to the weekend, while we were getting some new vitals on Archer plus some basics, lifting Archer out of his chair with the ceiling lift to place him on a scale for an accurate weight, lying him down very straight on a bed without pillows or tilts to measure from top to stern, we were also reviewing all aspects, kidneys, bladder, bowel, brain, cognitive, range of motion, bone, skeleton, etc. By the way, we know that Archer is now a bit over 6’3” tall, still growing!, and that he now weighs 160 pounds. We’ve come a long way baby from the 45 pounds he lost. That alone is such a wonderful thing. And I must say, Archer looks like himself again really, and yet, I also don’t fully recognize him as he is turning into a man before my eyes. And a man in many ways, more filled out in his face and neck, new wisdom behind his eyes. As we were finishing our appointment and talking about the success of the heart surgery, really the removal of the pace maker but more importantly the successful extraction of what I since learned were four feet! 48 inches of electrical leads in Archer’s chest and around Archer’s heart, I asked her about the results of the CT scan of Archer’s chest taken when he was in the hospital.

 

She looked in the computer but said it was not there and asked us if we were sure it was a CT scan and not something else. I told her I was sure it was a CT scan and explained that I had rescheduled it so it could could take place while Archer was already in the PICU recovering, and that indeed, it was June 16 when we had it done, the day after the cardiac surgery. She said, OK, Hold on, and she left to check a different computer, the EPIC system at Johns Hopkins Hospital which is new and allows for the unification of all tests and reports and records per patient with available access by multiple facilities.

 

She returned to tell us that she found an xray of the chest and an EKG of the heart and a sonogram of the chest as well, all taken June 15 but that there was no CT of the chest.

 

Archer and I both confirmed our vivid recollection that he had really had a CT of the chest. I told her that when I learned we’d be in the PICU overnight for observation, I remembered too from prior visits that the location of the pediatric CT scan machine was on the same floor as the PICU and so I had called to have the July CT scan date moved up to June 16, at noon in fact, to correspond with what I hoped would be our successful discharge from the PICU, knowing now how they prefer to discharge in the morning, so I scheduled it at noon so that all we had to do was roll across to the other side of the floor for the CT scan. And that is exactly what happened. She was baffled from what we were telling her and that no report seemed to exist. Archer then told her that he was positive it was a CT scan because in order to be slid into the big electric donut on a board, it took a few techs, since there was no hoyer lift, to lift him up and off and on, and whenever a group of strong men attempt to do this for Archer it is always very very tricky because his AD can spike if anyone grabs him too hard under his arms to try to lift him, which is inevitable when you are trying to lift a tall/long young man like Archer who is essentially dead weight, pardon my use of that term. So, we are always acting as watchdogs if you will to assure that in the event of no hoyer lift in a medical setting, which is common, any manual lift of Archer is carried out with very strong people very carefully who care and understand what the consequences are. I smiled and said, I wish I could just show you the scan but the JHH tech denied my taking a pic of the scan as I usually do. But the guy was a bit frazzled having to do the lifting without as much assistance as he would have liked and refusing our assistance, so I just let it go. As we recounted this memory, she looked quizickly at us and said, OK, I believe you. But it’s not in the system.

 

So, another really cool thing about the Archer Strong medical team, I picked up my phone and sent a text to our amazing pulmonologist doctor. After all, it was he who had put in the request for the CT scan so we would have an idea of whether or not the adolectosis in Archer’s lungs was getting better or worse and thus whether or when we could consider removing Archer’s tracheotomy, something he so very much wants.

 

Within minutes, he called saying he’d check and would call me back. Isn’t that just the best. Doctors who are responsive and good communicators.

 

Archer and I were loading up on our way home from KKI in the bus not long afterwards when I got another text from the pulmonologist: I just saw Archer’s CT scan. Can I call you in a few minutes?

 

I felt the suspense immediately. You see, usually we’d hear something like: test fine, or no change. Or something else like that.

 

I called.
He answered.
I said, Hi, it’s Louise.
He said, Well…
I said, Yes?
There was silence.
I had a flash before me with an urge to say, OK, do you want to give me the good news or the bad news first? But I had an equal thought to be still. I just waited.
He began in a low and steady voice, Well, it’s the blebs.
I felt my heart sink.
He continued, I went back to the November scan just to see. The blebs.
Silence again.
Able to bear it no more I said, Yes?
He said, They’re gone.
Silence.
I wanted to jump out of my skin and yet I also didn’t fully understand.
I said, They’re gone?
He said, Yes. Completely. I went back just to make sure of how many there had been. There are none.
Trying to contain myself, I said, So, could we consider this a little miracle?
He said, Well, there’s no medical explanation.
And he added, You have a very very resilient boy.

 

What we have is a very very blessed boy, now young man, and you, our family and friends as instruments of God’s mercy and grace have created the energy field for the Creative Miracle to happen. You have been praying and believing in the Creative Miracle with us. You have had higher awareness of your breath. You have breathed for Archer when he could not breathe on his own. You have made many special intentions for Archer’s lungs. You have prayed to God, to Jesus, to Mother Mary. Your requests for intercession to Fr. Bruno Lanteri have been answered. All of it. In unison, in communion. Archer Senft has experienced a miracle. There’s no medical explanation. And his lungs will have capacity for full and deep breaths as his diaphragm strengthens and the trach is removed.

 

The Creative Miracle. And when we least expected it. Took us by gentle surprise.

 

God is so good. God is so active in our lives. Yours too. You know that right? With every prayer for Archer, do you feel closer to God? We do. Thank you. Thank you so very very much.

 

I have so much more to tell you, but I will stop for tonight. It’s Sunday about to be Monday. It is so much to know this has happened. I will write again this week. I have been away on a spiritual retreat. There is much to catch up on.

 

If you have a moment to send Archer a birthday wish, it’s his birthday Wednesday, July 20. He will be 18. He can be reached at ASenft@McDonogh.org.

 

If you have another moment to thank God in person, slip into a chapel or other holy place and give thanks for us. Light a candle. The world needs our gratitude. We love you. We are very hopeful.

 

Amen.

 

Sending love

 

 


 

 

 

Thursday, July 14, 2016

 

Archer Senft
Family & Friends Update
Thursday, 7-14-16 DAY 345

 

Slime? What?

 

Here are a few pictures of Archer and his friends hard at work at Archer’s t-shirt business, Slimeyard Slimes. Yes! It’s incredible and very positive. Archer’s creative capacity is coming through thanks to your support and prayers waking up his entrepreneurial spirit which lives strong. As many of you know (because you have been with us through the blogs showing incredible stamina reading them!), Archer’s first drawing while in the hospital in November was of a snail, created from a swirly scribble in his first clumsy use of a stylus shoved into a hand splint wrapped around his forearm powered solely by his shoulder movement. He didn’t like that his drawing was so shaky and uncontrolled and not anything like what he used to be able to do. He thought it was so bad that he said he was no longer interested in art. Those were sad days. Your prayers and letters of encouragement created another go and a couple months later, he tried again. And again, he started with a shaky swirl and drew another snail. He added whimsical antennae and then, he added with one small stroke, a little dash on the face-a smile. It made us all smile.

 

He soon discovered graphic design thanks to the art department leadership at McDonogh school and the snail became an icon for him created anew through digital art, relying on his former more mathematical and precise approach to art. And we saw Archer’s always subtle and wry humor again when he created Slimeyard Slimes, a parody on Vineyard Vines.

 

His friends really liked it and encouraged him to do more designs. His Dad helped him find a printer and he began a little company, www.SlimeyardSlimes.com. He currently has a line of t-shirts, both short and long sleeve, that has four designs, all featuring the updated Snail. He also has Slimeyard Slimes Kids by “popular demand”! Smile again.

 

While not intended to be symbolic, it is hard not to see the significance of the snail to Archer and his progress, slow but steady, always hopeful.

 

Of course I still marvel about the irony of slime itself and how it has been both a curse in Archer’s recovery to breathe on his own as well as a mystical blessing for what I believe was happening all last fall with his body internally producing more mucous and slime than could be explained which was part of the Creative Miracle, actually like a spider spinning fibers of new neural and electrical connections to give what Archer would need to begin again. I believe that. Slime, who would have thunk it.

 

Slimeyard Slimes is Archer’s sole creation and we hope it makes you smile too. It’s his way, he said, of also contributing to his medical care and needs. Yep, he’s an amazing kid. Join us in feeling hopeful by wearing a shirt or telling others. Or just pass the message along of Hope, slow and steady, for new beginnings. Be sure to follow his progress he and his friends are having fun posting on the Slimeyard Slimes Instagram page @SlimeyardSlimes!

 

I have much to share about the ups and downs and will soon.

 

Sending love

 

slime 1

 

 

 

slime 2

 

 

 

 

 

slime 3

 


 

 

Wednesday, June 15, 2016
Archer Senft
Family & Friends Update
6-15-16 follow up

 

Amen.
Surgery went a little longer than expected, but all good. Archer was wheeled into his ICU room at 5:20pm! Delicate surgery but all went perfectly! ?? as they took every precaution in extracting about 24 inches of electrical leads from around Archer’s heart and veins. The Creative Miracle is very real. We are all thrilled and relieved.

 

Another huge step in a positive direction for Archer. It was unusual to have a pacemaker implanted in someone so young to begin with and it’s unusual to have a pace maker and the leads extracted forever. But that’s what we felt as a family needed to happen now. We’ve been inquiring about every two months for when the time might be right for this to happen as you might recall we were told when it was placed at the New Jersey ICU that it could be removed within a year.

 

I think Billy and I both feel so much relief that the removal of that hardware in his body and around his heart has happened. He no longer needs it, and we are so grateful for that too and his remarkable healing. Being a near drowning injury has thrown so many curve balls into a complicated injury that it is wonderful that Archer no longer needs it. And if we waited, it would be too high a risk to do so in the future. And that we are here in Baltimore with access to such a fine surgeon is another huge blessing. I kissed both surgeons hands before the surgery and tried to send as much love as I could in those kisses. So it’s all very good. We are very grateful for the life that pace maker provided to Archer. Very grateful. We are equally grateful to have it now fully removed.

 

Now, Archer is ready and preparing for the possibilities in the next chapter where he becomes a more viable candidate for alternative surgeries and uses of technology now that it is removed.

 

So, as he was settled into a room in the Pediatric Intensive Care Unit, back in our old stomping grounds at Johns Hopkins Hospital, we experienced a warm welcome. It is nice to be in a familiar place for things that are very serious. Relationships are so vital and so interesting. Out of the fire can come a new alchemy. Relentless engagement. Thank you, PICU.

 

And our euphoria about the good news from surgery was delightfully prolonged when we caught the end of the local news. I had received an email as I waited during surgery in the waiting room with all the other anxious parents. It was from Mary Bubala, local TV anchor and fabulous person, who let me know an interview she had with Archer last week would be on the air on the 5pm show, of all nights: tonight. And sure enough at 5:42pm it was on WJZTV, Baltimore, and sure enough, Archer was able to see it on the little tv monitor that hangs on each bed, as he came out of his anesthesia fog. Isn’t that amazing.

 

Please check it out, probably on line at www.wjztv.com/local. It’s a nice little piece. The best was at the end though when Ms. Bubala called for prayers for Archer and noted he was in surgery as she spoke. That made Archer smile. He liked that very much. Isn’t that lovely, the best. What a kind and generous person she is. Many prayers. God heard us all today.

 

So, In thanksgiving. Thank you, dear loving Father. And thank you all for being grateful with us. That too, I believe, creates well-being for us all. In fact, let’s just do more of that right now for each other. Think of something else God did for you today that you can feel gratitude for and thank Him for. Maybe you might thank God for your ability to drive your car and get you places you needed to be today, or for having a good car, or having a car with a tank of gas. Maybe you’re grateful and might thank God for your ability to talk with someone you love, or for the arms of someone else as they wrapped you in a hug. Maybe you were saved today from danger or something that could have been worse but was not, or maybe you were given extra courage to face something hard. Or maybe you spoke with humility in something that you did but you know it truly wasn’t all you. Whatever the many countless things are that you can be grateful for, just pick one and really celebrate it. God is so very active in our lives and even more so when we are open to his majesty all around us and within us. So, let’s all just thank God and the universe He has created for us. Breathe that in, yes another gift. The breath, always so life giving.

 

So I’ll sign off after a big day. Archer is rallying now out of his anesthesia and is hungry. Good sign. Funny thing. The nurse just told us to hurry and call the kitchen to place an order because it closes at 6:30pm. At 6:25pm we did but found an order taker who refused to take our order because Archer was not yet in the system. The nurse asked to speak with him. She was not pleased with the man in the kitchen who was impenetrable in his unwillingness to work with her and take the simple food order. In the struggle, Archer made her laugh when he said, What does it take around here for a man to get his hands on some chicken tenders?

 

Don’t you love that.
Archer, the man.
Getting his hands on chicken tenders.
Someday. Someday my darling son. Our lionhearted young man.

 

Amen.

 

Sending love

 


 

 

Archer Senft

Family & Friends Update
Wednesday 6-15-16 DAY 286

 

 

Calling all prayer warriors and Arch angels.  Storming Heaven today!

 

Archer undergoes cardiac surgery today at 12:30pm at Johns Hopkins Hospital. We believe in our heart surgeon who will remove his pace maker in a delicate procedure that will also remove  the two electrical leads by cutting through any adhesions to his ventricular veins using a laser like device to unsheathe them.  The miracle of modern medicine.

 

Arch feels strong,  and it is his first day of summer so to speak as he just finished his exams this week and, I hope (smile for all the parents out there) turned in his last paper that was due.  Who knows as he is his own young man responsible for his own things such as that.  But what I do know is how hard he has worked these last few months juggling school, art and his PT and OT.  He also took the SAT last week!  Yes, a huge accomplishment.  We signed him up and he did it with a scribe blackening all the bubbles as he directed.  I dropped him off and sat outside with all the medical equipment ready if he needed it. We are living in the moment and also moving forward!

 

While we have had a few more days of off –and-on living in what feels like quarantine when Archer’s blood pressure and autonomic dysreflexia happens,  the focus the last few weeks has been on health and school and Slimeyard Slimes! Check it out. www.slimeyardslimes.com But when Archer has trouble, it seems to be the bowel and this time we think it is due to bladder spasms of unknown origin.  We have doubled down on his high fiber and vegetables intake and also consulted our guru spine and body nutritionist who knows about the meridians of the body and its energy fields as well as we consulted with the Western trained nutritionist at KKI whose focus is on weight and calories.  Which by the by, for a 6 foot 3 inch athlete like Archer who probably she said had about a 2400-3000 a day caloric intake when healthy, now, as a quadripledic, he his caloric intake needs to be reduced 40-60% or he will gain weight he is not able to take off.   So, she recommended no more than 1320 calories a day! That’s not very many.   Think of the old days when we did all we could to get calories in as he was weaning from the ventilator.  The good news is we have tried to eat meat, veggies and fruits, but since Archer does not feed himself, most lunches are sandwiches and treats from loving friends. He will need to be careful.  But that is only a part of the story on nutrition.  As with just about everything, we do our best to straddle two or more very different world views and look for their convergence point and lean towards what seems to make the best sense or feels right intuitively for Archer.  For us that is both the weight information but also the information from our more Eastern trained and indigenous trained nutritionist who brings knowledge about the spine and alignment.

 

It’s incredible how generous my nutritionist is to us. I have relied upon her for a number of years now, as have our children by extension, for natural food supplements or homeopathic approaches.  I am smiling as I just wrote that because it literally has been an extension with Archer. You see, she relies upon muscle response testing, and has literally used me as the means of Archer’s arms to muscle response test him. If you are not familiar with it, you might be interested.   And as for a holistic approach generally, our medicine cabinet very rarely has the Tylenol or Advil bottle opened as we rely on natural immunity boosters instead plus other good things such has Omega 3 fish oil and other oils and tinctures to hydrate the organs of the body.  We are not against typical over the counter medicines but we are more or as much interested in natural pain relief but more importantly boosting health. So, here’s how it works if you are interested. It’s really quite fascinating.

 

Your body and mine, and Archer’s body, has energy. So does every living matter. Your body wants to protect you and will fight off what it doesn’t like, such as a virus, as it builds white blood cells. But there are a ton of other things in your environment that your body doesn’t like beside a flu bug or a common cold.  But you many not know it because it is so subtle and you are so strong and healthy and the body is so resilient and puts up with so much. The way muscle response testing works is elegantly simple. Your body cannot send energy on two things at the exact same time. We know that now related to cognitive thought as a result of recent discoveries in neuroscience, but it’s the same for physical exertion of the body and in attention and shifts of attention.

 

Muscle response testing relies on this basic premise.  So, using an outstretched arm,  our practitioner can place counter pressure on my arm with her hand/arm, while I  try to match and resist it, while in my other hand I hold, or have placed on my body, any other living matter.  I am not able to get a lock in my outstretched hand if my body does not like what I am holding in my other. It’s really amazing.  With most, but not all people, for instance, they cannot hold resistance in one arm when they are having placed on them or holding white sugar in the other.

 

And, in reverse, your body will give a good strong lock on things it likes, which are most things likely.  But it can discern what is troubling it by placing different things in vials on the body.  (I’ve always wondered if we could do this with relationships, smile, more on that later).  It’s subtle. So, my body through its natural wisdom has informed me of things it doesn’t like such as dry cleaning agents, which for you may be just fine, but not for me. And something your body may not like, might be just fine for me. It’s highly personalized and fine tuned for each body.

 

So, the energy of my body has also confirmed or informed me of things  it likes a lot such as sweet potatoes and rose oil! It’s fun in that way, but it’s also much more nuanced with a practitioner who has studied for many years and knows how to muscle response test internal organs, allergens and how to support internal body health.   And it’s all wisdom elicited from the body. And it’s all non invasive.  For instance, I saw our practitioner after Archer’s accident and before we flew to Atlanta. I knew I was in bad shape.   But it was astonishing to  me how I could barely match the arm resistance when she tested my heart.  I knew it was broken in a metaphoric sense and in a way we say, Her heart was broken. But it was truly in a weakened state physically.  So, she found through muscle response testing a tincture that came from flowers found in the rain forest. which my body responded to very favorably, which I drank in tea the entire time I was in Atlanta. I know I know, you are probably thinking I am a little crazy and I may have just lost any credibility I had in your eyes.  But then again faith is like that too.  I am a cautious, if not guarded experimenter, but I think I was born open to possibility, or have learned to be more and more open or am more trusting in what people with God’s grace are capable of., including tapping into ancient cultures and wisdom of the body that is so available.

 

So, we muscle response tested Archer! Yep, I became his arms.

 

It was not as simple as it sounds actually because throughout these last ten months, can you believe it has been over ten months, almost a year, my my, and as I was thinking in these last 10 months, my energy has been turned and switched and has needed constant realignment, so in order for me to be helpful to Archer, I had to be in good shape and not switched myself with my own energy. So our practitioner  has helped Archer a few times when his lungs were in such bad shape and more recently to find that his colon was very weakened so we just began a different supplement. It’s always changing as our environment and life changes.  Here’s a picture of our doing the work one day at KKI that might amuse you as you see my outstretched arm in place of Archer’s since he doesn’t have that ability (yet) and how the energy of his body then flowed by extension through mine.  Interestingly enough, my own body is resisting scars as it turns out in my own muscle response tests, and I think it is picking up on Archer’s abdomen full of scars as I do not have any scars to speak of. I have to think about that. As I write, I wonder if it is a transference thing or if I do have a scar I am not aware of. Hmm. More for another day.

 

As for today, another weekday without any nurse help as they get sick or cancel out, we will bathe Archer again in a rinse that is antibacterial before we set out to Johns Hopkins for an arrival time for prep at 9:30am.  I need to  sign off to go do that with Billy now.

 

It is a good day. I am a little nervous. I don’t like the sounds of the 1% but then so much of what we do has that fatality factor in it, right?  Driving perhaps.  I’m not sure, but I do know that focusing on good things and positive crowds out the space where darkness lurks and flushes it.  So, I am instead recalling the sweetness of the weekend before last when my nephew graduated from Gonzaga in DC and we all went, big day for Archer, and my mom came from Illinois.

 

We were all having lunch at the Old Ebbitt Grill afterwards, oh my, what  a great restaurant, and the place where in Billy’s and my old days living in Washington, DC, after college when we had our first ever professional jobs in a law firm and accounting firm, respectively, we would splurge and go to the Old Ebbitt and thought we had died and gone to heaven as we sucked oysters and sat in the plush velvet booths with the brass arm rails and dark wood paneling. So, there we were again last weekend for the first time in almost 35 years, but this time with all five of our kids and cousins and extended family and, my mom.

 

My sister and I had shared with each other over the weekend how we noticed with her Alzheimers the obvious, of course, that our mom can no longer hold a thought for more than a moment and she will ask many times the same question or comment on the exact same thing as if she never heard the answers, but we are accepting that and understand that is part of the Alzheimers condition. We can see how it could be very deflating for a daily caregiver as well but what we shared with a certain wonderment was something else we noticed.  In all the deterioration is something else that is side by side on the Alzheimers journey and that is: the moment itself. Our mom is fully present in the moment itself.

 

It’s sweet and it’s really quite profound. She is fully engaged and aware in that moment observation or conversation or interaction before it is gone.

 

So, keeping that in mind, it changes everything really. There is such joy in the moment. So long as I am in the moment with her, or any of us is, and not in a hurry or thinking of something else that actually crowds out the experience of the moment itself.

 

And, so, I was having one of those moments where I could just feel the joy sweeping over me so warmly as she sat next to me at the big table at the Old Ebbitt grill.  She was asking me for the fifth or sixth time as she couldn’t take her eyes off of Archer, how we transported him. She was very focused and concerned repeatedly about that. But in one of those moments as I answered her again, hopefully lovingly, I just wanted her to know more anything else how much I loved her.

 

So, I leaned really close and looked in her eyes and said, Mom, I love you so much.  And do you know what happened? She said, Oh, honey, that makes me cry.

And she began to weep, and then I began to weep and then we began to laugh together through our tears sitting there in the plush surroundings of the Old Ebbitt with all our family in animated conversations around us, as if we were in a little bubble.  And then the most remarkable thing.  She looked up at me through her laughing and teary eyes as we were blotting them with the cloth napkin from her lap, and she said right directly to me, He will walk.

And I looked at her and said, I think you are right.

She was of course referring to Archer. She was so earnest.

She then said, It will be soon.

 

I can’t explain how that made me feel. From my 81 year old mom who has been suffering from dimensia and now Alzheimers now about 10 years now.

 

Soon. God’s time.

 

The Creative Miracle is happening.  It was manifest in that moment.

 

And in some ways, Archer is already walking.

 

Please pray for us today, for Archer’s heart surgeon. For health and steadiness. And for love and faith. Allow the Holy Spirit to fill your hearts and let’s create the energy field we all need today for healing and for two other friends who have had very serious surgery recently.  Calling upon Raphael our angel of healing and Michael our angle of protection.  And Fr. Bruno Lanteri to intercede with special requests for the Creative Miracle in the making.

 

That we may all walk upright today., feel our hearts beating and keeping us alive. And take in our own breath of life and breathe out whatever it is that obstructs us internally.  And breathe in newness. Breathe in life.  Life. To always begin again.

 

Amen.

 

Sending love

 

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Saturday, May 21, 2016

 

Archer Senft

Friends & Family Update

Saturday 5-21-16 DAY 261

 

 

Out of the rain will come the sun, and even if only short periods, it is so welcomed. Getting Archer’s disregulated system back to baseline has been the chief focus and we hope we are saying good bye to the long days of managing blood pressure swings to the 200’s, even the high 180’s. As I write now, it is hard to believe that since I last wrote you, we have gone from the equivalent of a house quarantine to welcoming many into our home to celebrate and break bread together in a Mass at our home with Fr. Tim Gallaher of the Oblates of the Virgin Mary, the order Fr. Bruno Lanteri founded, to experiencing the glory last night under the lights as the McDonogh lacrosse team claimed a prized title.

 

It was so sweet. A Division A MIAA Championship. #1 in the country. Archer’s lacrosse team. Lax, the coaches, players and sport he so loves. The McDonogh varsity team: sweet victory.

 

The boys played with grace and composure against Boys Latin, who also played very well, the goalies for both teams indestructible and amazing.  Although they were our opponents, I watched a couple of Archer’s very dear friends on the BL team move with ease, one on the field after suffering a concussion– unrelated to lacrosse—and I was filled with joy for him and his team that he was back in action.  It feels so good to be back in action. That is what it is like for us right now. It’s been a long number of weeks with the medical set backs but Archer is back in action.

 

So there he was Friday night, in his powerchair on the field with the team, albeit off to the side with his former JV lax coaches who flanked his sides, but nevertheless on the field where he wanted to be.  His headmaster joined him as well and it was lovely. From our perch in the stands, I had many moments of feeling God’s grace at that sight on the field and was overflowing with gratitude.

 

Archer and coaches MIAA

 

The varsity players on the field all had their under jerseys on which sported the words, Archer Strong, stitched across the back such that it hung below the team outer jersey. What this meant was that as the middies leaned in during a face off, or the face off guy crouched low in plunge forward stance, or the arms of the attack men were raised to shoot, or the defensemen were raised to check, the words Archer Strong peeked out from under and perhaps appeared as a small reminder or incentive, to be seen by teammates as well as the opponent. I hadn’t realized until a few games ago that they all had this insignia and had been wearing it all season long. (They rushed to Archer after the Gilman game, throwing off their outer jerseys to reveal to him their under jerseys. They posed for a pic stood backwards. It was really sweet. Here is a photo. I just love the one of Archer and his dear friend engaged in a conversation.)

 

archer strong jerseys MIAA archer strong MIAA 2

 

I wondered what it must have been like for the BL boys to see the Archer Strong on the backs of the McDonogh jerseys as they engaged in a fierce game for the title.  A couple of the BL players are also very good friends of Archer’s. And Archer’s story and the Archer Strong could be anyone’s, but there it was on every McDonogh uniform.

 

The Championship game was played at a very high level of sportsmanship and skill and was very exciting. When McDonogh claimed the last 60 seconds of the game with a three goal lead and the clock buzzer sounded the end, there was an uproaring of cheers. The very first thing Archer’s head coach did was to walk over to Arch on the sidelines, give him the game ball by placing it in his lap and then hug him. Archer reciprocated with his arms way outstretched to the sides, the best he can do for a big hug on his own. It was really amazing. It was such a moment. It was elegantly simple, that walk over to Archer so unexpected, sweet, quiet and brief, before he returned to the huzzah of cheers and excitement. The boys were ecstatic. The first championship for McDonogh, the powerhouse that it is, since 2005.

 

Congratulations, boys.

 

The whoops and cheers and happy yells and then the award ceremony all happened in a flash. But then another totally unexpected thing happened. With victory trophy in hand, the McDonogh players spontaneously rushed over to Archer who had moved to the fence, and they swarmed him, laying the victory plaque in his lap, intensely wanting to share it with him. It was all so touching and one moving moment after another.

 

Congratulations, Eagles. You were soaring. Thank you for carrying Archer on your wings.

 

While Billy and I sat with friends high up in the stands, I hope I captured a small fraction of the moment; here are a few pics.

 

archer strong shot MIAA

above courtesy of professional photographer

 

McD rush the field MIAA

 

 

hilgy hug MIAA

hilgy hug 2 MIAA

 

 

trophy rush MIAA

 

 

 

trophy to archer rush MIAA

 

 

 

We stayed until the end. The very end, just savoring as a family for Archer, and joining with other families in their joy for their sons, for McDonogh.

 

Even as a little girl, I’ve always been of the mind that a loss at the championship level is, well, tough to experience, but then again, just being in the championship is still awesome. Heck, McDonogh is now #1 in the country; and even though Boys Latin lost, they are still #9 in the country. Still very high, and just to be ranked at all is quite a feat. While only one team wins it all, to be good enough to be in the finals or semifinals of a tournament is a huge accomplishment. We hope we have imparted that on our kids, whether their teams were winning tournaments or coming in second or third, although we did win a lot of tournaments over the years but not always.  Like in the Olympics, I never understood how the Olympian who did not win the gold was any less of a sportsman or sportswoman than the others who did wear the gold. They were all good enough to make the Olympic team.  I always felt that way, but you know, now, I feel a new way.  Even more basic. Now, I think, just to be able to play. To play. To move, to throw, to experience such grace on your legs, or in your hands, fleeting feet, dashing bodies, precise movements. So gorgeous. Such blessings. Not so much about winning but about the ability to run and jump and curl and turn and move that gracefully. We have so much to be grateful for for our incredible bodies. And the breath that breathes us through all those moves. Awesome in every way. Thank you, God.

 

But you know what then happened at the game?  There I was caught up in the moment for the whole team at the win of the Championship and all the choreography that was unfolding, and I didn’t even notice.  Other moms who were watching Archer told me what they had seen. Archer later told me what had transpired.

 

A Boys Latin player, the opponent, while his team was still on the field at the very end of the game, just seconds after the clock buzzer went off, having just lost the Division A Championship, did the most extraordinary thing. As his teammates were walking off the field, he jogged over to the McDonogh sidelines where Archer was in his wheelchair, patted him tenderly on the head with his large lax gloves still on, and said,

Congratulations, buddy. You’re a really strong kid. They did it for you.

 

Isn’t that amazing.

 

So amazing. Archer said he didn’t know him.

 

We looked up his name in the program.  We know him now. A senior defenseman. We were all very moved.  His spontaneous action and his words really stirred Archer’s heart.

 

There is this aspect of unity that we are called to. We yearn for it.  And whether you play sports or not, or like sports or not, it occurs to me that the American dream is often played out in our sports stories and experiences. Right? We all love the American dream. The dream of potential. And we live it to one extent or the other every day. It’s a very deep democratic value rooted in freedom, rooted in the potential of the human spirit. To be able to choose. To make it. To succeed. To live free. To play with desire. To play for a cause.  Playing sports is very patriotic in many ways.

 

For us, and with Billy coaching the kids for over two decades, we’ve seen new talent discovered and nurtured through sports and new aspects of character emerge because they were called forth. Sure, hard work is rewarded and showing up is expected but it has to come from within the player and can’t be forced, try as some coaches might.  There is a freedom in choosing what kind of a player you are, want to be, or will become. Champions are made every season, on the inside, by the choices made by each player daily.  The mental grit it takes to keep going, practicing over and over, showing up rain or shine in lacrosse, winter or spring, whether on the field or providing the transportation and on the sidelines, to run hard, the physical strength to push your own limits, to understand how the body moves and gains strength, to get up when you’ve tripped or been tripped, to respect your body when it is injured or needs rest and then to go at it again with gusto to build endurance and to hone skills, over and over. And woven in all this individual grit is the strongest thread of all: humility, a one for all and all for one, a one sound, one band as the McDonogh team re-framed it, to not be a bully, to not be a ball hog, nor want to be because you understand at a deep knowing level that the game is never won in the long run by cheap shots or by one player. It takes heart to inspire not only yourself from within but also your teammates which you do through your desire, as much for them as for yourself, that you each have moments of glory on the field, and you work to support those moments for each other.

 

I remember so clearly how our son Pete and his lax friends excelled at this in their earlier high school years, perhaps also because of the times spent together off the field in our garage. While it’s a story for another day, we have, or had, this garage where a lot of unity was created over the years for our big kids and their friends. On the field, even with talent and all kinds of amazing qualities of character, unity only happens in the context of relationship. Billy and I really believe that.

 

When we feel unity, amazing things happen. Yes, it’s on the field where character is built, but it’s only in the context of relationship that unity has a chance to be experienced.  Even between enemies so to speak. Like the BL defenseman and Archer. So, whether a championship is won or not, every player has the chance everyday in play or in practice, on the field and off, to feel unity, to be more human and feel a connection to others.

 

I honestly think the seasons where teams are way on top only happens when relationship is fostered and experienced early on and throughout.  That to me is what great coaches understand. And what great coaches pay attention to. And what great coaches spend time and energy fostering. The skills are not the number one. The connected hearts are the number one.

 

Through the flame of relationship, many things are born and galvanized. The sports playing field is an amazing place where we can see that happen.

 

Imagine if all teams’ parents and coaches valued a relational approach. I think the competition and skill set would be at a higher level, and I would wager that there would be less injuries.

 

Yes, we love lacrosse for its finesse and strategy; we also love it for the years of giving us so many good relationships.

 

Right now as I write I feel my heart swell with gratitude for the wonderful families who, over the last two decades since our children began playing at age five and six, have created the environment where our children have learned so much, mainly and hopefully about themselves. The families who have schlepped food and drink and coolers and tents and made roster cards and took pictures and drove long distances and gave up their weekends and sat for hours between games in tournaments in hot sun and cold rain and introduced themselves and noticed each other and said hello every game and talked about our kids both on and off the field sharing best parenting practices, good buys and sales, good places to eat and funny stories. They brought healthy snacks and cut up oranges and homemade sandwiches and fresh baked brownies and rice krispie treats. You know what I am talking about. We spent years in days like those. I love those families who did this. And I hope they know we love them. Billy loved coaching so many of their children.

 

As I think about it now, each of those lax seasons, some with new parents as we moved up an age group or over in a league, and not all leagues were the same, not all coaches understood the relationship secret sauce.  But those seasons that did, as parents, we rose and fell together. We knew from our sons’ banter with each other as they sat lazily under the tents passing the time between games in tournaments that they experienced on the field what we could not as mere spectators. And while we could neither see nor hear their chatter through their helmets, their code words of secret plays and their subtle signals of the glove and stick given to competent trusting and trustworthy comrades, we nevertheless would experience vicariously the rush and glory when a play was executed with flow.  I often had my breath taken away in a moment of  wonder at the beauty of the game.

 

And as our boys got older and in more command of their growing and strong bodies, as well as becoming more knowledgeable about the game itself, they seemed to develop an institutional knowledge of each other’s moves and signals. So, while we as parent spectators would watch their plays with great anticipation as they moved a ball skillfully and quickly down the field, sometimes so fast you couldn’t see it, there were other times when they knew or their opponents knew their moves because they had played at one time with each other rather than against.  Pete had some hilarious stories about how his special mix-it-up-fake-you-out move with his stick followed by an overhand shot to the lower left pocket of the goal which almost always resulted in a goal was later in high school almost always saved when a friend and summer club teammate was now playing goalie on the opponent high school team who knew his moves. They knew each other. And they would laugh heartily afterwards.  I loved hearing things like that. It often crossed by heart when I would hear them carrying on the kitchen on Saturday mornings that the life shaping part was that they had learned to reveal parts of themselves, good for the whole, receptive to each other, needing each other, relying on each other both to give and to receive, not holding back because of the What if someday we are opponents.. kind of thinking. No, they were all in. The stories told at our house in our kitchen on Saturday or Sunday mornings with groups of high school boys recanting tales and teasing each other and sharing in so many good times over late breakfast were priceless. Lacrosse has been good to our children.

 

Boy, I’m really on a roll about sports and I’ll stop soon but I have a couple other things on my mind now that I think of what I love about the game, and I’d like your opinion. I’ll save what I would like to change for another day but you could probably guess, having to do with ways to foster humility and more relational coaching and more relational parenting from the sidelines. But back to what has made a difference for Archer now that I think about it.

 

We all know the play of any game, even at a high level, is never perfect. In fact, while it’s the moments of perfection that draw us to watch the game, it’s the moments of human error that keep us on the edge of our seats.  Isn’t that crazy but it’s true. Sports is such a celebration of humanity.  The flawless divine moments live side by side with human fallibility. Have you ever thought about that?  It’s really true. And, it’s such a metaphor for life.  The divine inspires the flawed to have compassion and forgiveness, to be humble.  I think of the many times as a parent and with other parents, living our own humanity on the sidelines, we were always quick to forgive in an instant one player’s mistake, even a big one like a turn over, because we knew if it wasn’t our child that moment, it could be, and probably was at a prior game or might be in a future game. We wanted to be able to begin again. Clean slate. That takes forgiveness. The exercise of this forgiveness made us better parents. It created more connection and safety to be human, for our kids to be themselves and to grow, never shunned or excluded because of a few flaws, and for us on the sidelines to be kinder and softer. Lacrosse has had that effect on me at least. Maybe the game has even made us better people. Who knows. Because just like the kids on the field, we make mistakes and fall too, and we need to get up again and keep going. It’s much easier to begin again when you know you are forgiven. That’s a huge aspect I think of beginning again. To forgive others, and to forgive ourselves and to ask for forgiveness. And that takes humility.

 

I wonder if any social science studies have been conducted on a sport’s impact on parenting, or watching from the sidelines.  It seems to me that if you were not relational with the other players and their families, the game could be brutal, the comments could be snarky and mean, and the competition to win would be very individual and disconnected. That kind of energy if left unbalanced or unchecked could hurt a lot of people in a lot of ways. And I imagine it has many a time. For the most part, we have just gotten lucky with most of the teams our kids have been on. We can all choose as parents and as players to be relational with each other. It’s really quite simple. It just takes desire, belief and a little effort.

 

So, while I have really said more than intended about lacrosse and sports, I wonder what your thoughts are. Has sports, or lacrosse in particular, possibly deepened your adult capacity for forgiveness?  Have you found that you experienced a desire for humility because it really was a team effort and not just one person? Has it had this effect on your children? If so, was it because they had fostered friendships with their teammates, or because you had fostered friendships with the other parents? What about those seasons where you had little to no relationship with other members or families on the team? Did it make a difference? What do you think about that?

 

I was thinking about this when I saw some of the old MLC families at the McDonogh Championship game, and it was really good. I could really feel their love. And the love of so many families whose children our children have played on teams and in leagues from school to club teams. Those sideline, bleacher and under tent conversations, like multicolored threads, wove a relationship tapestry that has provided comfort to our family during these early months with Archer. Thank you.

 

I am so grateful for the experiences Archer had playing lacrosse for a number of years and learning what he has learned about himself or perhaps knew about himself but was given an opportunity to demonstrate or try out on the lacrosse field. I was thinking of these things as the Championship game crowd thinned out and began to go home.

 

Archer wanted to stay to the bitter end, and so we did.  Once everyone had left the stadium, Archer looked around and gave us a sweet smile and said,

We can go home now.

 

We had come in two cars. Billy, Archer, Dutch and Dewey headed to the handicapped bus parking behind the stadium, and I walked back in the direction of the front gate where my car was parked–would you believe in a spot right in front of the front ticket window as if it had been magically waiting for me when I drove up to join the boys.  Small graces, I always thank God for them.

 

As I walked the track around the stretch of large green turf, the lights of the field were still blazing but the stands were empty as was the field, albeit still strewn with celebratory debris which still had some lingering sparkle under the night lights. It was very quiet. Everyone had gone home or off elsewhere to celebrate. As I walked, the only activity at the beautiful prestigious Johns Hopkins University lacrosse field were a couple men pulling overflowing trash cans out of the way clearing the path for the last food vendor truck making its way out of the same gate I too was headed for.  I was noticing every detail of the evening, it was in high relief.  I should not have been surprised about what then happened given the evening of excitement and high emotion, but I was. There were hints when earlier in the stands as I watched the interactions on the field after the game, I had felt the hot tears welling up but they were quickly crowded out by the joy of the victory and watching the boys revel.

 

But now as I walked alone in the cool spring air and in the large empty space, it just hit me. The hot tears surged and stung and it felt like I had a hot sword in my heart, it was like agony. I can’t explain it. I was mentally very happy for the win and for Archer, but I realized how very sad I was in my heart that he will only watch and not participate where he once had, perhaps the rest of his life, never to have again the feeling of movement, that feeling of graceful movement. I couldn’t help myself and heard my low mournful lament that came up from my body out of nowhere. The sound was a low cry, almost primitive, a deep whimper, like an injured wild animal. It startled me. I could hear myself as if from afar and yet I felt swallowed up, I could feel the aching, the deep aching of my chest walls, like housing protecting my heart. Oh, Archer, my darling. I am so very sorry.

 

I am so sorry this has happened to you. I hope you do not feel what I do.

 

I kept walking in the cool air, off the track, towards the main gate.  My chest felt like it was caving in. I asked blessed mother Mary to please wrap her arms around me, as I walked out of the stadium. And it dissipated.

 

I love to drive. And the drive home felt good.

 

I realized how tired I am again though. It’s been a long month since I have written. I was also acutely aware of the subtle crack in my experience of joy created by feelings of deep loss. It occurred to me that I imagine that loss is the beginning seed of despair. I do not feel despair actually but I know I need to on guard against it. While I want to Archer to live fully, our family to live fully and breathe in hope, I know I need to face the feelings of loss too. It’s a bit draining right now, the last ten days having had so many lacrosse highlights and other highlights juxtaposed to the reality of the three long weeks of vigilance 24-7 to care for Archer’s regulation swings with no one fully knowing why. Thank you for your prayers. They were heard I know. It just took a lot longer than the neuro team had predicted to settle down. But by their own admission, there is so much to be understood and learned from one quadriplegic to another. To be rendered a quad takes such great force on impact, that the differences in the way the injury manifests can be vast.

 

I think now of that story of Moses when he needed to keep his arms outstretched to hold his staff so his people would not be defeated, and how he grew very weary and tired and his friends and family took turns holding his arms up for him because he didn’t have the strength himself.

 

Thank you for all the times you have held up my arms for me, for our family.  I am sure that you too have felt like Moses on occasion. I have the last few weeks. I hope I can help hold your arms someday even though I hope you won’t ever need it.

 

This week or by the end, God willing with Archer’s stabilization, we hope to have some rest. The boys plan as always to go to to the NCAA lacrosse games, this year in Philadelphia, and then we will all return to Cape May. It will be a grand experiment with Archer, getting into the house, the temperatures, a manual hoyer lift. We will take a special air mattress and all the pulmonary equipment and a van of medical supplies to see how we do on the road for a couple days. I think Archer is a bit nervous. He said in his methodical fashion,

 

Ma, this requires a lot of logistics. We have to think it through ahead of time. Please wish us luck!

 

Before we head out, please come join us in a celebration of life. One of Archer’s last year’s lax coaches, who has been by his side a couple days a week, organized a benefit for Archer. Please consider coming if you are so inclined as proceeds benefit the Archer Senft Special Needs Trust. Fun starts this Thursday, May 26, 2016, 4pm-9pm at Andy Nelson’s BBQ on York Road in Cockeysville, MD.  You locals know how good Andy Nelson’s BBQ is. Steve Martell and Ned Courtemanche, both fine musicians, and lacrosse coaches, will entertain us with live music as well. Bring your families. Lots of picnic tables. All are welcome. The more the merrier. Please join us. I’m sure it will be a good time outside and under roof, and you can feed your families some good BBQ!  BBQ is one of Archer’s most favorite foods, so he is looking forward to being there with you.

 

Another very beautiful thing happened. This past week, the JV lax team also had a huge victory and won their Championship game, for the first time in McDonogh’s history. Yes, big deal. And yes, beautiful, but that is not what I was referring to when I say beautiful now. McDonogh renamed the JV award the Archer Senft Award for relentless perseverance and persistence.  They asked Archer if he could be there when they presented it. Of course he would be there. It was an honor. It was a lovely late afternoon last week with a ceremony in the barn like structure where the boys had a nice meal and time with each other. There were many stories and awards given as is the custom at the end of our lacrosse seasons. They saved the Archer Senft award for last. They boys did not know about it. It was very moving as his coaches reflected on the player Archer had been, was, still is I guess in many ways, just a different kind of playing field.

 

Archer was an attackman in lacrosse. The head coach spoke about Arch and about how he made a name for himself with his sweet flow, which started with his mane of hair he had and would hold back out of his face with a head band. The boys cheered. Then the coach got serious and said Archer’s flow was with his amazing shot with his stick held way behind his back and when he finished his shot, that stick would be behind his back again but on the other side. Yep. We can all picture that move of Archer’s. The coach then talked about the way Archer could ride. That for such a mild mannered guy, it’s hard to describe the way he could ride another player relentlessly, tenaciously they said (riding an opponent really well prevents him from shooting if you can keep up with him, and Archer they said could always keep up as he was tenancious), and that as a maddog rider, his season still holds the highest stat for successful rides, still 3% higher than even this season where they won the Championship, and the boys cheered again. That was very generous of them to do that. The coach then spoke about how Archer also held the lead in ground balls, again noting his tenacity. It was really nice for Coach to note those things for Arch.  Archer loved the game of lacrosse. He really did.  He really does.

 

Archer was asked if he’d like to speak and he did. In his still a bit whispery voice, he shared how honored he was and that this year they accomplished, not individually but more importantly as a team, something McDonogh has never been able to do before, and that is to win a Championship, and to remember that and to never give up.  There were many cheers. It was a sweet moment.

 

Here is a photo of the two JV players who received the Archer Senft award.

 

JV award McD

 

 

It struck me how his head coach captured something about Archer that is very true, he is this kind mild mannered kid, now man, and yet he has this drive that comes out of nowhere and doesn’t stop.  I think about a photo of Arch that one of his classmates sent when we were in the ICU in New Jersey; the first photo we hung up for Archer to see as he lay ever so still in his bed only able to look in one direction, unable to speak all hooked up with many tubes in his nose, mouth and body.  I loved that photo because it told me what Archer was like at school, or how his friends saw him, a long lanky mountain cat lounging between classes, comfortable with himself and life.  I wonder if I might find that photo. I am sure it is in the many bags of correspondence.  Oh, here it is. I just texted Archer for it and he sent it. Isn’t that the best! He can respond like that now, using his stylist. It’s just so amazing. You think he’s using his hands or gripping the stylus and some think he can paint again. He’s not able to feel his arms or hands (yet). All the movement is from his biceps. So, here he is with a friend in Sophomore Advisory at McDonogh last year, so free and so easy. I really love this little pic.

 

Archer lounging

 

 

Isn’t it amazing how in the blink of an eye, life can change.

 

But you know, I bet if you reflect for a moment about the qualities of your children, I mean, what makes them special, how they sit or carry themselves, their habits of mind, the way they go about things, the patterns of their actions and thinking, a profile would emerge in a new kind of way, a way that whispers about self-awareness which can be fostered to serve them as they get older. If only we noticed and brought to their attention. I bet you do that. If not, it’s a gift to give those you love. That’s really where self awareness teaching begins, and we can help our children see those patterns, the good patterns especially, the patterns of their true essence, brought to the surface for more intentional exploration and appreciation.

 

For instance I remember a time my breath was taken away by Paula’s selfless generosity. She surrendered something very special for the good of someone else and as I watched her so do, I am sure my heart skipped a beat. She was about five years old I think, and it was her birthday and we were having a birthday party at our house. Since she was the oldest, she started that tradition of our home birthday parties. I had gotten specially for her a couple helium balloons, one each of her two then favorite colors, one I had hung on a front urn and another which I had hung in our maple tree in front of our house. This was over 20 years ago and pretty helium balloons seemed like a real treat, very special.  Isn’t it funny how so much changes for so many things that were special but now are quite commonplace such as balloons where you can zip into Party City for handfuls of such balloons in minutes today.  Eating out is similar. I remember what a big deal it was to go out to eat with our family, a treat, something special. Now, well, how many times a week might I rely on restaurant food.  Oh my, for that matter, I remember what a treat it was just to order a pizza and have it delivered on a Friday night. Something to look forward to all week.  Now, we just hit an app or pull into a restaurant like it’s no big deal. Anyway, back to Paula and her balloons. She was delighted. At the start of the party, as one child was being dropped off by her mother, she had a younger sibling in tow, say a two or three year old toddler. That child was enamored by the balloon in the tree and as his mother turned to leave, taking him by the hand, he began to protest that he wanted that balloon as he stomped and pointed. As she tried to cajole him to her car, he began to cry; he didn’t want to leave without that beautiful balloon bobbing in the tree.  He began to wail. The mother was saying something like, C’mon Y. No, you can’t have it. That’s Paula’s balloon. Etc. He began to wail. He would have nothing of it. Other children being dropped off for the party were staring at this very distressed child. He was dissolving over that balloon as his little hands were outstretched still reaching for it while his mother was practically having to drag him to her car. Little Paula in her shorts and tennis shoes, quickly climbed up the tree and untied the balloon and just gave it to him. The whole scene happened in a flash. Just like that.

 

As she handed it to him, he stopped crying, and laughing, his little tears still glistening in the creases of his eyes. All was well.  Paula smiled and she and her little friends skipped off into the house. I was so struck by how she did that unprompted on her own. Indeed there has been this quality of self-sacrifice for the good of the whole that is a chief marker in her leadership style to this day. As I think about it now, that pattern was there way back when, and hopefully in noticing it, we have helped her see how beautiful it is so long as she doesn’t lose her self or her soul or something very important in the giving away.  For isn’t it often the case that that which itself is so pure and good in excess can cause us or others to suffer?

 

Can you see the patterns in your own children? or in yourself, for that matter? It’s nice to do. As I write, I think of Dewey, at a time of about the same age, maybe around five years old. He was signed up for swim lessons at the neighborhood pool but chose instead to sit on the side of the pool and observe, all summer.  It’s true. And it was the second summer of doing so. No amount of coaxing by the instructor or by me would get him in the water. So, I said to him and to the teacher, I don’t mind if he wants to sit and watch. I know he’ll swim when he thinks he’s ready.

 

But I had said to him the prior summer when he was four, and he never got in the water then, at least for lessons. I remember so clearly reminding myself not to worry and not to just throw him in. The lessons at our pool happened every day all summer long and our pool produced strong swimmers. Our other kids were products of that and I knew he would be too, in his time. There are many different learning styles and paces of development I reminded myself. After all, Dewey was walking and could kick a ball at 10 months. What was I worried about?  I wondered, was he afraid of the water or perhaps just didn’t like the shock of the cold water when jumping in, or was it the frenetic activity of many little kids doing the flutter kick at the same time that was too much? I’ll never know.

 

But what I do know is the lessons included swimming the width of the small diving pool, the instructor treading water available to gently prop each little swimming body up. Nope, Dewey not interested. By the mid summer, the little kids were included in the swim races that happened with other neighborhood pools and clubs.  Well, Dewey would have none of that either. OK.  By the end of July after he had essentially sat on the side of the pool during lessons, he just decided to go in. Out of nowhere. Just like that. No coaxing, no fanfare, he just got in quietly and swam across with the other kids. All the kids and the instructor were delighted.

 

Afterwards, I told him he was very courageous; he beamed.  I painted a pottery plate that year for him for Christmas, with his name on it and the Courage Award painted on the band. It sits in a plate holder on his bookshelves in his bedroom to this day, fifteen years later, now a young man.  Whether a child gets an award or not, it’s really about noticing their patterns, their gifts, and love them and celebrate them and support their development. I was so struck by how Dewey observed and must have replayed in his thoughts the swimming learnings he was watching over and over so that when he decided to get into the water, it was as if he had been swimming all summer. Indeed there has been this quality of observing and mind replay that has been a chief marker in his approach to life to this day. As I think about it now, that pattern was there way back when, and hopefully in noticing it, we have helped him see how beautiful it is and how he can rely on it and how he can also be mindful to not retreat in his mind for so long that he misses the real life experience.  Isn’t it true that for each of our special gifts, the other side of the coin is excess.

 

I had a Gramma who noticed my chief features I think and helped me balance them.  She did that for all of us grandkids but she did it in a way that we each thought we were the apple of her eye, her favorite. She had many favorites and we all adored her. For instance, wherever she and I went, or so it seemed to me as a little girl growing up in Springfield, Illinois, she told everyone, This is my grandbaby, Louise. She is so smart and is going to be the first woman President of the United States of America.

 

Just like that. Well, we know that didn’t happen, lol, but she said it like she meant it, and I internalized that. I believed her. She was my greatest supporter. Back at her house where I spent a lot of time, she would help me in the late nights stop sewing or crossstitching or playing house or school for hours on end by telling me that whatever I was engrossed in doing, it would be waiting for me in the morning, and she’d make me go to bed telling me that a president has to rest. Isn’t that funny. Repeated over and over. But it was a metaphor for my life, solid advice, tailored to my patterns that she took notice of, the gift and the excess.  That kind of love and attention to a child’s gifts as well as the excess of their features is invaluable for life development. It sure can help alleviate suffering down the road. I hope I have done that for our children. I am sure you have for yours, or you can. Ask yourself, How have I noticed my child’s patterns and celebrated them as well as helped them guard against their excess? Do you notice your own? Ask your children. I promise it will be a wonderful 1:1 conversation if it is from the heart. It’s the kind of conversation that is precious and delicate. It cannot be tinged with anything untrue or snarky, or tainted with aspects of any other agenda you may have. It’s not a conversation to get anyone to do anything. It’s for reflection and discernment only. Stay pure and authentic. Think about how you can hear information when delivered in a truly loving way. Whatever you notice and want to share, if it is authentic, the recipient usually already knows about himself or herself and it rings authentic to them, or maybe it doesn’t until you name it and give some language to it, or maybe it doesn’t right then but it likely will later. Since it has no agenda, but is a life force, like breath, it is there to sustain us. And to deep our relationships. Keep the conversation going. Ask your children to share in a loving way their observations about you. It is guaranteed to deepen your relationship if you stay receptive, centered and grounded. Your kids notice you more than you think. Playing sports, raising children, they all make us better.

 

Oh, I digress again.  I just love kids. And I love human development. God is so good to give us the potential to experience life fully.

 

These are some of the main reasons I remain committed to being a divorce mediator.  I believe that parents who work out their differences, even if it’s setting forth clear boundaries, have a much better chance of being the parents they’d like to be, and kids have a better chance of having fewer emotional scars to work through for decades to come. I believe that all children have a strong yearning to have connection with, acknowledgment from, or at least peace with their parents, no matter what age.  I think that yearning lasts for children until they are about… 87 years old. (Smile). True. We can alleviate so much suffering if we are committed to helping each other develop authentically. I am so deeply grateful to those in my chosen communities who have helped me on this path and who continue to help me. My work is to stay receptive. But those are matters we can discuss another time.

 

In a nutshell, since I last updated you, let’s see, there has been even more in the flurry of amazing things, many happening all at once, actually all around the window of time of our venerable Bruno Lanteri’s, the blessed priest who died 200 years ago, to whom we pray for intercession for a Creative Miracle, whose birthday was May 12.  There were three news articles that all came out just as we were climbing up out of what felt like house arrest or in patient again but this time on Longwood Road as we managed as best we could the wild blood pressure fluctuations with new protocols and to-do’s arrived at in a five hour collaborative meeting with our chief caregivers and the nursing company and the state of Maryland rep, until the intensity ebbed and the band shortened over the weeks. We are now back to baseline.  The rep by the way was from the Model Waiver; Archer is in, at least until he turns 18 in July. Here are the news links.

 

Article Catholic Review 5-3-16

http://www.catholicreview.org/article/home/miracle-in-progress-cathedral-parishioner-has-broken-c5-unbreakable-spirit

 

 

Article Cape May Herald 5-11-16

http://www.capemaycounty.com/news/article_114e4a78-17ac-11e6-b915-a3514bc81337.html?mode=jqm

 

 

 

Article Varsity News, lacrosse 5-13-16

https://www.varsityviews.com/stories/text/2016/05/11/the-healing-power-of-sport/573347a7173fdf03004ab81d

 

It’s so interesting the angle that each reporter takes in the questions they ask and how they hear what you say through that filter. Communication is an imperfect thing. The interviews are long and full of so many questions; they leave me wondering about things I had not given much thought to like, What is it you want readers to know.  So I am appreciative of that. I suppose the theme never dive even in deeper water without knowing what is in front of you is a basic one, but its more about what can happen when we have hope, the story of what you all have done for us, giving thanks for Archer’s life, for God’s goodness and mercy and to ask for continued prayers for a Creative Miracle. We need your prayers, your good intentions. Daily. We really do. It is hard. But we are making it because of you and God’s grace.

 

In the last number of weeks managing Archer’s delicate regulation issues, we have lost a lot of PT and OT time and a number of days of school time, mainly McDonogh time as we really had not been able to risk leaving the house. We are so grateful for the Home & Hospital teachers through the Baltimore Polytechnical Institute.

 

So, let me update you on the medicals and then the educational front.

 

High blood pressure and skin and elimination/bowel: Assessment is the name of the game. Morning, noon and night. If his blood pressure is on the rise, we take all the regular Autonomic Dysreflexia (AD) measures and loosen all his clothing and check his skin and fingernails and toe nails and urine output and tubes in his body to assure they are clear or not kinked etc. The last month of trial and error trying to find what Archer’s body was repelling, included our putting away all tennis shoes for now and purchasing the cowhide Sperrys with the UGG like lining so they are more like slippers on his feet, and changing to a different TED pressure stockings, dispensing with his abdomen binder, heck, practically stripping Archer to be honest. That’s the high blood pressure first level of defense regime.

 

And we have new protocols when his BP is on the rise and our other measures are not lowering it. We look to urine strip tests and run to the clinic for cultures if our home tests are positive. We were doing this weekly. We have added cranberry to his daily regime and heard from another quad that cream of tartar is also effective in preventing UTI’s which prevents episodes of AD for quads.

 

We also have a protocol for his blood pressure when it gets to systolic at 140: we apply the nitroglycerin paste on his chest on a piece of tape that we can later peel off as that stuff is powerful. We wait to see what his system does, taking BP readings every few minutes and then every 10-15 minutes. Once it starts to come down and gets to 110, we wipe off the paste. Archer’s regular pressure is 90’s to 100 on the systolic. If on the other hand, the BP does not decrease and rises to 160, then we give Archer a clomidine, put him in the Hoyer lift and begin a bowel program as something is not open in his system. Since clomidine lasts 6 hours or so, it’s a measure we hope to avoid. If it stays in the 160’s or goes higher, we give him another and continue to work on helping him get comfortable as the headaches are fierce. The blurry vision though comes when he goes real low and that scares me as that was a pre curser to his seizure.  For a solid two weeks after the ER visit, we battled BP readings rising into the 200’s and then plummeting. It was honestly very frightening but being scared does none of us any good. We have gotten pretty good at remaining steady and making sure Archer is upright, has nothing on and we start more aggressive bowel clean out measures. It might be unsavory to speak of but it is actually something very important and something you might take from granted, like your breath.

 

Proper elimination is nothing to take for granted.  Being obstructed for him can kill him, seriously, or cause such bad AD that it causes brain damage from the high BP. We were close to the latter this last time in the ER visit. All this to say that your body too doesn’t want to be clogged up or blocked in any way. So, when you eliminate, once, twice, a number of times daily, count your blessings. For those of you plagued with having to get up in the middle of the night when you age and get older, honestly, celebrate that your body can eliminate and get rid of the waste. Really. It’s all a good thing, a necessary thing, a vital thing. Be good to your system and eat a lot of fiber and stay away from that which you know makes you feel bad. Anything that gives a tummy ache or a feeling of too much, those are culprits in Archer’s world, because he doesn’t have those feelings but his body does. It’s so hard to comprehend quadriplegia.  He doesn’t feel but his body does.  His nerves do not register to his brain the sensations, but his body experiences them.  It experiences pain. And it experiences touch. Archer doesn’t experience the pain or the touch, but his body does. And that body is going to provide love and comfort and happiness to him especially as he gets older.  So, that is why my collaboration with an angel reflexologist is so important in my view of things. His organs will respond, especially now that she can work on the undersides of his feet since the wounds are healed. His body knows the good touch and the massage touch and it is good for him, even though the messages of sensation do not register for him in a cognitive kind of way. Any way, taking care of his body in all ways is important and we will have much to do in the future on this. We are just beginning.  Care to ensure he is not blocked is critical. So, BP and gastro care go hand in glove for us. And we want to avoid what is referred to as institutional bowel, where the system is really messed up because of over use of laxatives and clean outs. No, we want to avoid that like the plague. And we had a strong taste of it these last few weeks. You can probably now understand that any combination of these things being off, and what we have to do to get Archer back on track is why we had to stay home for a couple weeks and what it took for Archer’s poor system to regulate back to baseline. We are getting there. There’s always something new. We are told it’s in the first year or two that it is up and down with trying to figure out best ways to manage each quad. Someone at Shepherd told us that each quad is as delicate and complex and unique as a snowflake.

 

Low blood pressure and elimination: So, what do we do about low blood pressure. Well, we didn’t really have a protocol for that as our issues were mainly high blood pressure but since he began that crazy yo yo of swings, we have a basic protocol for low too. In the early days, Archer would get dizzy most every time he was moved from his bed into a chair or a shower chair. He really hated his showers at Shepherd for this and other reasons, but the change in pressure made him feel dizzy.  We hadn’t had much dizziness in a number of months. But when Archer told me very clearly as if he was clinically diagnosing himself in the ER room and it started with a very fierce intense headache, and then went to dizziness and then to blurry vision, it was a first and has left an indelible mark on me, as I recall running out of the room looking for an attending doctor pleading, Please! We need you now! Something very bad is happening to my son.

 

And I think you may know the rest of that story.

 

So, about ten days after the PICU stay, we were feeling much better. It had been tense as the neuro doctors told us the PRES would resolve in a few days. We are counting the days and by last count, few meant 3 to 5. As one day blurred into another in our home cocoon, we were edging on 10 before we had a 24 hour period of baseline steady blood pressure. The cooped up time at home was intensified by Billy’s anger and frustration and total loss of trust in our nurses, but honestly, probably an anger with many things. We deal with these things very differently.  Unknowing takes a real toll. Helplessness takes another. We were all at a loss for what else to do to stop the blood pressure swings and to restore Archer’s elimination system to functioning.

 

No western doctor had anything else to offer. While our hand picked team was amazing and supportive, and I love each one of them, none had any definitive answers as we did trial and error and added to our tool chest what might work on a given morning or evening.  It was just as well that we had no nursing care when  I think we needed it but it is going to take some time for Billy to trust nurses again. So, he and I were back to taking turns and he the lionshare of the nights. Anyway, we think we nursed Arch back to health, or at least got closer to base line. It’s not all copeastetic yet but we are on our way. Anyway, it was such a relief when around day 10 we thought Archer could resume going back to McDonogh for classes. So, we made plans to venture out to McDonogh for the first time in a couple weeks back to school. Archer was anticipating showing his graphic art teacher what he had been working on in that time and conversing with him about other ideas he had.

 

Throughout the touch and go medical situation, Archer had been working intensely on his digital art.  For any hour he was in an acceptable blood pressure zone and his head was not aching, he was focused on this iPad and the use of his styluses to poke the screen, double fisted so to speak, with a stylus shoved into each hand’s palm grip. He looked like a conductor with his elbows out to the sides as he would maneuver with his shoulders and biceps the sticks stuck in the ends of his splints.  We are so immensely grateful that Archer has discovered or taken to digital art and that his teachers opened up those new horizons to him as one of many new art options, and he took to it like a fish to water. Isn’t it wonderful when we have something we love to do and we have time to spend doing it. It’s ironic in some ways because what he lost he has found and what Archer has now is time.

 

Anyway, this particular day was full of anticipation because we also had a meeting scheduled downtown at KKI with the powerchair reps that afternoon who would perform the many mechanical tweaks and adjustments that were needed to finish the customized powerchair, fit just for him, on order since December.  We were looking at a 3 hour seating and fitting session that would replace his regular PT.  Buoyed by positive feedback from his art teacher, and feeling connected again with his friends in his AP English class, he and I decided we’d be a little adventuresome and celebrate being out and about again and  drive to the Subway near McDonogh school for lunch.

 

Now, driving the big Whale into any parking lot takes some grit and a lot of care and patience, and patience of others. The trick is to find a parking spot that is actually a double spot since we have a very large lift that folds out on an electric mechanical system like a stairway sort of. It needs a lot of room.  So we surveyed the handicapped area and saw that there really wasn’t room for our Whale, so we drove to the outskirts of the parking lot to park where we wouldn’t block anyone else.  But what that meant was that there was no way to get up onto the sidewalk once we rolled through the parking lot to the Subway. Afterall, the curb cuts are at the entrances. Se we had to roll through the entire parking lot up through the middle of the parked cars and past the cars pulling in and pulling out. It was a real feat as Archer had to stop a number of times and maneuver around. He never complains. Once into the Subway, it was fun because we discovered how great it is to sit at a bar like high top, perfect for Archer as he raises himself in this chair. Heck, when we are at church and he is on the outside of the pew in the aisle kind of toward the back where we sit, he can get the best seat in the house when he raises his chair.   So, we were having a lovely lunch, I feeding him his bacon chicken ranch that he likes and he sipping his camel back water pack. We packed up to leave and started to wheel out. I went to get the bus as we strategized I could drive and park parallel in the parking lot but perpendicular to the parked cars and drop the lift in a single handicapped space that was open and near a curb cut which would give us enough room. All this was happening when Archer said, Ma, I’m getting dizzy.

I stopped everything and told him to weight shift back so we could raise his feet.

He then said, Ma, I’m seeing blurry.

Oh my God.  I got so focused and asked, Arch, where are you on a scale of 1-10 in blurriness?

He said, a 6.

It happened so fast.

I phoned the McDonogh nurse whom we had just left an hour before.

We got him into the bus, I ran back into the Subway to buy the saltiest thing I could find, Fritos, and began feeding Archer Fritos and offering him more water with his feet still elevated.

I didn’t have a blood pressure cuff, damnit.

I told him to keep drinking while I got the salty Fritos in his mouth.

Archer reported to me his depth perception was way off as he couldn’t find or get the end of the Camel Back water hose to his lips as he usually can, a new feat the last month, but a task he was not able to do then as he fumbled in a clumsy new way, unable.

I lilfted it to his mouth for him and I asked again, What is happening now?

He said his blurriness was a 4.

OK, good, I said. And I offered him more water.

He then said, Ma, No more. I can’t drink anymore. I’m feeling nauseous. My bladder feels really full.

That knocked my socks off. I said, Arch, Really? Your bladder feels really full?

I glanced at the urine bag with its good color of content and it looked fine and was not filled. I asked, You can really feel like a back up?

I was really mystified. I added, The bag contents looks fine and it shouldn’t feel full because the foley is draining and the bag is not full or backed up, but OK, let’s take a break in water.

We didn’t have any TEDS or binder in the car because we had stopped dressing him in them related to the high blood pressure we were used to battling. I told him we were going to drive home on our way to KKI to get them.

I asked him to do another weight shift in his chair to keep his feet elevated again before we got on the road. He did.

I asked and he reported his blurriness was better, but still a 3-4.

I wondered if we should go the ER, and it flashed to me that maybe I should call 911 and we could meet on the highway or something. I was about 30 minutes from KKI.   I told Archer my thoughts and what  I was considering doing.

I then slowly drove home south on the highway to get the TEDS and binder for his chest and abdomen. On the ride, Archer had the presence to research signs and symptoms of low blood pressure so we could determine if we should go to the ER or not. He’s amazing, I’m telling you. His ability to be at arms length and to observe and verbalize what is going on and happening with his body is very keen.

 

He said he couldn’t read and make it all out because it was still blurry as we drove but that it appeared we were doing the right things. He was satisfied. He kept blinking his eyes in that odd way like he did in the ER room as I studied him the rearview mirror as I drove. We got home and I raced in and back out and put on the TEDS, those black stockings that are hard as the dickens to put on every day because they are so tight. I asked him to put his chair in recline so I could put them on.

 

His burry vision went from a 3 to a 1. I was feeling much better about the situation and looking forward to being with medical care soon.

 

We drove back down the highway to KKI. I called while on the road to tell them the situation and when we arrived at 2:25pm, they were totally ready for us with a nurse and team.

His blood pressure was then 82/55.

 

We thought the reason might have been the double dose of clonodine that the nurse had given mistakenly that morning before the bowel program as a preventative for BP spikes since the bottle said 2x day on the label. But that was not our protocol.  But that was hot her fault. Not Archer’s either. The protocols for that had just been put in place a couple days prior and the nursing company had not had a chance yet to update and the doctor prescribing the protocol was not the same doctor who called in the drug order.  It happens. What is so interesting to me is how badly we need answes to that which causes us suffering and we do not understand why. I think it’s a human yearing to know and when we don’t, we try to piece together maybe’s as they give us some peace of mind. Have you ever thought about that? Is that true for you?

 

We began the powerchair fitting session. Archer said he was not feeling so good. He then reported tingling dull pins and needles in his left arm. His entire arm. It lasted 20-30 minutes. I thought we had been moving in the right direction and now he has pins and needles. Oh my Lord, please help us.

He later told me it was the same pins and needles as before the seizure but he said he didn’t want to freak us out. Archer!

At 3:10pm AD symptoms then began with profuse sweats, and a headache. They gave him a double dose of propantheline and took off the TEDs and binder. In doing so, as we asked Archer to tilt back in his chair and what do you think we found? a kink in the foley catheter drain line; it was actually pinched under his powerchair. So, it was not the tube insert and it was not a full bag but a kink in the line underneath. That’s a new one. I imagined this whole episode started when we were at Subway and he raised his new chair to the bar table height. And when I asked him to do weight shifts or to tilt back so I could put on the TEDS, he experienced some relief because it was no longer kinked but since we didn’t straighten it out from under the chair, it then got pinched again when he brought his chair back to sitting mode.

 

So now we know. And that he experienced his bladder as being full was exactly right.

 

3:12pm He was better within 60 seconds of getting the chair off the plastic line and the kink being straightened. Amazing.

 

It was then that he told me he had had tingling dull pins and needles in his left arm but that it was gone.

3:15pm 99/51 BP.

3:35pm 105/64 BP.

A day in the life of a quadriplegic. Always learning.

 

Endocrine/Spine:  He is losing more bone density but since he was a strong athlete, his scores are still higher relative to what they would have expected in a quadriplegic his age. All good. He takes alondronate weekly by pills, and we are going to an injection/infusion, an IV drip for a couple hours every six months. We have to rule out some other things.  A sad aspect of the last 8 weeks is that as a result of his foot wounds the outer ones from the spasms and tennis shoes, the ones on the bottom of his feet I have a hunch have to do with the energy blockages in his body, all of which have taken the full 8 weeks to treat and care for with daily wound care. Something like a foot blister takes weeks to heal since his blood doesn’t flow well because he is not upright and moving.  Pause right now and imagine how quickly and well your blood flows. Without your even thinking about it. Heck, just push on you finger tips and see them blanche and see them return to their pink state a second later.  That blood flow heals you, your skin, and allows the rest of your organs to work well. Archer’s lack of innervation interferes with these most basic functions of the system. Oh be so very grateful for movement. Move today in a way that you notice. The movement keeps your skeleton strong and your blood pressure regulated. It’s a beautiful thing. Not to be taken for granted.

 

The system is so finely tuned that if we don’t use something in our bodies, like muscle, it atrophies, such as when someone is fitted with a cast and upon taking the limb out of the cast, that limb of the body has literally shrunk. Well, that is what is happening to Archer’s 6.3 inch spine and his skeleton. While he is growing in his chair because of his age, he is losing bone density because he is not walking. We thought we would remedy that with a power chair that allows him to stand but he hasn’t been able to take advantage of that function, because he lost 8 weeks of stamina training not being able to wear his AFO’s, Ankle-Foot Orthosis casts, molded specially for his feet which we put on each night after we hoyer lift him into bed to keep the extenders on his feet and ankles in alignment.

 

And since he now hasn’t worn them for 8 weeks, he has his right foot turning in. Arrrgg. Always something related and interconnected to something else.

 

I noticed this last week as his slippered foot kept falling off his foot plate, and I knew we had to do something about it as it happened pretty quickly relatively speaking. I called KKI to alert them we needed an assessment, and when we were working with the physical therapist, I smiled at Arch as I was telling her, We’ve got to get on this with a new brace. Afterall, we need to keep Archer’s feet in good shape for that day when he’s going to walk.

 

Archer always drops his head, closes his eyes and nods in deliberate, quiet consent.

The therapist now joins us and she said, Yep, Arch, you gotta keep your eye on these things; your future is bright.

 

Archer and I just smile at each other. That day will come.

 

Endocrine and Urology: But from another endocrine perspective, the loss of calcium, which is created by lack of movement, has resulted in the formation of a couple more kidney stones that showed up on a scan. A total of three a couple months ago. That was helpful information because Archer sensed in the last few weeks that the stones may have been the cause of a couple more rounds of about three days each of feeling pretty bad each round, with AD and our managing Archer as best we can to keep the Autonomic Dysreflexia symptoms manageable while we waited it out.  We believe these experiences have all been separate matters and were not what hastened the ER visit and the seizure or related to the residual high BP But they all happen at the same time so who’s to say. What we do attribute those two separate 3-4 day feeling like the flu with high BP and sweats to: passing two of the kidney stones. Sure enough, another CT scan now shows only one stone left. I’m telling you, everything impacts something else, so intricately related. So, we had to add a couple more doctors to his team to interface with endrocrine, this time an orthopeodic who will make Archer a special new plastic set of AFOs, and a genitourinary specialist for the calcium loss and stones.

 

Cardiac: Big news: Archer will have surgery June 15, 7am at Johns Hopkins Hospital to remove his pace maker. It’s time. He is ready. It’s a bit scary and certainly complicated as we are interested in having all the leads removed to prevent irreversible problems later down the road. We think we are working with the best of the best surgeons to do this. The device the surgeon will use relies on laser beams to cut away any adhesions of the wires to the veins, literally unsheathing as it goes. Gives me shivers. The time to do it is now though, preferably before it’s been in a year. There is a risk of removal but the risk increases once the device is in place more than a year. The pace maker has served its purpose.  While he had many PVC’s in the ER, all on the medical team are in agreement, it’s time. So, please pray for Archer especially on June 15. Archer recalls the doctor saying there is a 1% chance of death. That is always scary. But I believe he will be surrounded by Fr. Bruno and many angels. We will probably stay one night in the hospital and then come home, and hopefully be healed and feeling strong by June 27 when the Shepherd Program begins.

 

Pulmonary: we are getting home oxygen to have on hand. We have had an increase in use of his inexsufflator because we think he also caught a cough that Dutch brought home, but with homeopathic remedies and nutritinonal supplements, he has remained very strong not getting sick in any way this winter or spring. Another blessing. Thank you, Lord. Thank you, Bruno.

 

Psyiatry and Physical Therapy:  Almost six weeks ago, Archer was attempting in his daily PT (physical therapy) to lean forward on his own, which means our leaning him forward onto his arms which act as supports on a table top. The top of body is very heavy so it takes a lot of bicep strength for him to sustain this for any length of time. It’s amazing that the things he is now able to do with his hands, or so it appears, is because of building his biceps. And the crazy thing is that his arms still remain skinnier than mine because the muscle atrophy is that great. His PT said it will be years before we will see much definition in his biceps because it will take that long to build it back.  So interesting to me. Regardless of what his arms look like now, he is becoming very strong. So, he can hold his leaning forward for about 4 minutes now before his body crashes. The beauty of having multiple people working on him at most times is to hold and catch him and make sure his heavy noninnervated body does not fall over.

 

He is doing this without the stim machine which is very exciting, but it’s as a result of the stim machine, another form of strength training. So, when I sent you the video of Archer pushing a plastic bat trying to connect with hitting a ball, he was on the stim machine and the entire motion was stimulated, in other words, he couldn’t feel he was doing it and he wasn’t actually holding the bat as they had his wrapped his hands around the bat with fabric tape. It’s just so amazing. Simulation over and over.  But that motion helps build his bicep muscles which are innervated and are the means for him to now swipe with precision his ipad, and to tap his ipad open with a special button app, and then tap out what he wants to write on for example an English paper he is doing on his own for school. He’s amazing. He is doing all his school work now himself, including pages of calc problems. It takes him every evening, and in the van riding and whenever he is in his powerchair upright at home. Tapping away, the kid never stops.  That reminds me of a poem Archer just wrote as an AP assignment of many re assessing what he learned last fall when he was studying Shakespeare.  I kinda like it myself and will share it with you, if you happen to like Shakespeare, and in this case Hamlet. The part that I love the most and am so grateful for is that Archer has full use of his intellect. His brain, his mind.  He was busy tapping out this poem and then it was just done. He didn’t have multiple drafts. He doesn’t really, at least on the paper or screen. He may in his mind. He spends time thinking about things more I’d say so that when he goes to write them, it’s pretty much what he wanted to say to reserve the energy in executing. All I do is print them for him when he asks me to, show him what I printed, and then hand it to his home and hospital teachers who are following the AP curricula from either Poly or McDonogh. Here is a small cut and paste:

 

AP English IV Hamlet Assessment

Section A:

 

1.Poem inspired by Hamlet

 

Three Men

Three men standing, watching, waiting,

Hoping for the ghost to appear.

Three men frightened, talking, debating,

For the ghost’s agenda was still unclear.

The first man’s name, Horatio,

An educated chap was he.

Along to witness the apparition,

Still skeptical of what he might see.

The other two were Marcellus and Bernardo,

Thus making the company three.

The second and third were guarding the ramparts,

On lookout for an attack from the north.

All alone were the three, an odd company,

For they were lacking a fourth.

When finally at midnight the clock did strike,

The ghost appeared, right on time.

But why it looked just like the late King

Was a mystery beyond reason and rhyme.

Without a doubt it was he,

The resemblance irrefutable,

Still dressed in his armor,

From his crown to his cuticles.

He strode right on by,

Without speaking a word.

Filling Horatio with fear and wonder,

For he now believed what he’d heard.

So disturbed were the three that

A decision was made like a jury

To alert the young prince to his father’s appearance,

And further avoid the king’s fury.

 

Literary devices used: Rhyme, Rhythm, Simile, Repetition

 

I have many things to share with you about his education, which is quite complicated and I may need to share later as this is already too long, but first a couple more exciting things happening with his physical recovery.  Archer is also working on sitting up.  Again, with the help of two PT’s, they Hoyer lift him out of his powerchair in a harness at the spine gym. He is placed on a low to the ground table, covered with a vinyl padded gym cloth.  While one PT props him up by kneeling behind him on the pad with her arms around his torso and a belt around his waist as a safety precaution, the other PT gets his hands in place at his side, places them on the pad, fingers spread apart, just like you and I would sit if if we were very tired and needed to rest on our hands while remaining upright.  As they steady Archer’s heavy body, and he says he is ready, they then gently let him go with all the weight of his upper body balanced on his arms and hands, that he still can’t feel but that his biceps can support.  It’s really amazing. Oh, be so very grateful for your biceps and shoulders. Move those shoulders and feel how good that feels throughout your back, stretching and loosening you up. Do it right now. Doesn’t that feel so good? Archer cannot do that yet, but he can shrug them a little and move his arms up and down higher and higher now. As for the strength that has come from those repeated over and over motions, Arch was able to sit up 20 seconds before his body gave way and the therapists caught him. We celebrated those 20 seconds. He of course keeps trying and strength training every day. Six weeks ago, he was able to sit up and do the same thing for 20 seconds, now, he is up to a full one minute and 20 seconds. We celebrated that milestone. And after two more weeks of trying and strength training, he sat on his own for 4 minutes yesterday! Yep, 4 minutes sitting on his own without straps and harnesses and props in use.  Pretty amazing. He’s amazing. His progress is amazing. You are amazing for continuing to keep him in your prayers.

 

Thank you.

 

These incremental steps of progress really do not happen without your love and support.  You know that. We know that. It’s part of the Creative Miracle.  Archer will get upright someday, on his own. Hey, Archer is already walking in a sense.  These milestones are steps of a kind.  And our days are so packed that it’s important for us to see them as steps too. My gosh, our days are so packed. Like I said to a school therapist whom we were trying to schedule, Archer is progressing and on the move because he is using every opportunity he can in these first 24 months from injury to stimulate and help the body recover all that it can.  We are told that this first year especially is so critical, followed by the next to try to work with the body. With C2 injuries, we are not messing around on doing all we can since he was not able to fully participate at all in such strengthening the first six months of the year because of the ventilator. The message we have received from other quads it is to not stop and do all we can in this time, and we are trying.

 

So, from early rise to get Archer ready for the day out of his bed, in a harness for elimination using gravity to assist and then dressed, checking the skin, redressing any feet wounds, then TEDS on, tubes thread through his pants to get them on, inexsufflator used to help clear and expand the lungs, teeth brushed and face cleaned, hair brushed, hat positioned the way he likes it, trach cleaned, no longer cannulated, and supra pubic flushed, lines checked, bag changed as needed, meds and supplements given, homepath remedies mixed, and hand splints put on, and electronics hooked up, and his powerchair positioned, he rolls then into the kitchen for breakfast and then into a full day of home school and McDonogh school for art and classroom stimulation with fellow AP English students, to various lunch eating experiments or feeding him in the parking lot, to doctor’s appointments alternating with busing down quickly to KKI where his AP History teacher meets us 2-3 days a week, followed by PT or OT or a personal trainer until 5:30pm every day, and then head home by 6:30pm, and do the evening round of meds, supplements, everything as needed, and then alternative therapies like reflexology twice a week and muscle response testing, which we did once a couple months ago and we just did again last night to work on opening his elimination pathways. PHOTO OF LPS AS ARM FOR ARCH. The days are very full.  For his future assessment, we have looked for the best. You know our criteria: most experienced, cutting edge knowledge, believers. We took a day trip to the Magee Spinal Rehab Center in Philadelphia where we met with the director there.  He was good. And we hope to return to the Shepherd Center in Atlanta this summer for their Day Program where Archer has specific goals he wants to work on that he is not able to do here. That is good. KKI Outpatient spine clinic has been terrific in helping us stretch out insurance coverage and other forms of payments which I work on daily. That is good. It’s just been so jammed packed these last six weeks.

 

Yes, we lost some of our night nursing coverage and yes, we were taking turns caring for Archer and putting into place help, and a combination of self pay and volunteer plan was emerging since even with some coverage, nurses want regular 9-5pm hours and they don’t drive so our needs do not mesh so well since Arch is on the move to cobble together his tight schedule as we try so hard to get him the classes he needs to graduate, taught at the level he is capable of, taught in the time frames that allow him to also participate in daily art and daily PT/OT. All three are the legs of the stool of recovery for him.  Of course, faith, hope and love are the legs of the stool of the Creative Miracle. McDonogh hired a nurse for the day for the rest of the semester.  We put together all the paper work and the appeal letter to BCBS to cover us for another 30 days since there was a new glimmer that Archer could get some services through a Medicaid program for children, at least until he is 18 in July. It was another scramble. It appeared he had oddly been granted Social Security/Medicaid on March 31, 2016 and then it was not reinstituted as of the morning of April 1. No one, not a soul at Medicaid or Social Security can explain why that is so. And we have tried, oh we have so tried. Thus, we all went from clicking our heels and hoping and praying it would continue to scratching our heads and feeling very deflated that it had not.  It has caused a lot of stress. A few weeks ago, it was pretty bad in our household as we monitored Archer’s blood pressure, and I began to monitor Billy’s and my own. There was definite cause for concern for Billy’s so that is another very important piece I wanted to attend to as well. Thank goodness we have a couple doctors who actually make home visits and are willing to pay attention to the big picture for us. Our medical doctor friends have been absolutely invaluable. Gems.

 

And, we had another PT angle to take care of too as poor Dutch had been in incredible pain in his knees, so much so that he did not want to go to lax practice or play in a game so I knew it was bad. He had hobbled a bit during basketball season and his symptoms were just like ones I recall when I was in 7th grade and ran track and I thought my legs would ache off as I lay on the sofa. My mom told me they were just growing pains and I would outgrow them. She was right. And I did, but it was painful I recall.  But when Dutch told me he had felt this pain starting way back during soccer season but since I was away in Atlanta, he had not told me, that broke my heart.  So, his knee pains had been going on for awhile. He has grown about 5-6 inches since last summer and is a tall boy. I suspect he will be 6’ 3” too like Archer or even 6’ 5” the rate he is going. So, I called his pediatrician and got a referral for an xray.  I took Dutch one of those evenings a few weeks ago to a clinic for that and then picked up the readings, and as it turns out, he has OSGood Schlotters’ condition, the modern fancy way of saying, Growing Pains. So, we had to incorporate a month of PT for him and a new regimen of home exercises to provide some relief for the situation of his bones growing faster than the rest of his body.  PT here and PT there. KKI couldn’t take him though, and his schedule with school and sports practice didn’t leave much room either, plus the overlay of Archer’s schedule. Oh my.

 

And my Mom was diagnosed since I last updated you with progressive Alzheimers. We have known it for some time, but to have it named and noted is sobering. In March, Dutch and I went down to spend some time with her in Florida and that took a pretty good deal of planning to be away. I wasn’t sure we could do it but my siblings and I committed to each other that we want to be close to her and keep an eye on her to support whatever her husband may need, so we rotate and have them year of touch points, none of the five of us living in the same town as she does. Our dear Angel from Atlanta and old UVA pal came to Baltimore to take my place for four days and help Billy and drive the bus! We are so lucky for such good friends. Archer continued to do remarkable things in OT and PT then. But then he got the dreaded bed sores, well, not bed sores but the equivalent on the bottom of his feet which I had mentioned before. They took the last eight weeks to heal. Isn’t that astounding. 8 weeks. As one blister began to heal with daily attention and the assistance and expertise of KKI”s wound care specialist, another pink spot would appear, which then turned to a blister, when created a large boggy spot on the bottom of his foot, like a few inches around the blister since Archer has little blood flow and circulation in his feet. There ended up being four, one right after the other. We really don’t know why and couldn’t seem to get ahead of it even with the daily expert care. So, all of our plans to work on the FES stim bike were not to be, at least then, but we are renewing efforts now.  I am wondering a lot about Archer’s then ongoing blisters on this feet. No shoes helps immensely. We adjusted his foot plate to accommodate his long calves as was analyzed by our trip to Magee Hospital. But I am thinking about it from a spiritual mind, body spirit view and wonder the significance.  Today, we are back into a regular PT schedule, no wound care visits and able to get Archer upright in his chair at home for the very first time. So, we are beginning again, and again.

 

Those are our biggest medical updates.

 

It is the most time consuming task to schedule and stay on top of so many doctors visits, 17 specialists now, and what they prescribe and where they want you to go next. As I right I want to laugh out loud. It’s really almost outlandish. But we do it and I’m sure this is the story of many families who have a child with  complicated medical issues. To think Archer is 100% healthy and all this is from the lack of innervation. Oh, bless our working bodies! And our spinal cord!

 

As for all the prescriptions and next steps and follow up that every doctor breezily says at the end of our visits we should do, there is nothing I have seen or heard of that does any of this for you, or does any of the scheduling related to what a particular doctor prescribed for a particular test, like a CT scan or an MRI or blood work or hearing test or urine culture etc. If I were not writing it in my medical journal, it would be a visit without any follow up, because, trust me, that would be easy to do. My to-do lists for Archer are so long everyday.  A doctor’s time line is also very long by and large where ours is rather immediate on making the puzzle all fit together and placing the pieces in the right sequence. For instance, Archer’s urologist needed a test ordered by Archer’s nephrologist some time before and unbeknownst to us it was necessary for the urologist for what he needed the next time we saw him for the sp change and to advise us on some issues we had.  We happened to have it but had I not called to find out after the nephrologist visit where we go for such test that was ordered and then googled the places to get their contact information myself, thank goodness for the internet, the test or the appointment for it would have never happened and the results of the test needed three weeks later would not have happened and we would be in waiting mode another month or so, it’s like that. Archer’s system is so intricately and delicately balanced that we scramble to fulfill what each doctor requests. But it could have been weeks or months or never that I would have called to get that test scheduled. We’re in the loop actually now with a podiatrist visit and doctor relationship falling through and never getting scheduled and we are way off track now with that.  Stuff like this has the potential to happen a lot. Archer’s body is very related to other aspects of his body and I think one of my main jobs is to orchestrate, stay on top of scheduling and communicating with all these specialists and keep the various specialties apprised of each other and what is happening.

 

But that is not easy at all. So, last week there was a report that we needed to send to the Shepherd Center, as we are very hopeful Archer may go back this summer for 2-4 weeks in the Day Program for intensive re-entry and strengthening therapy.  Anyway the document I needed to provide to Shepherd from one specialist was outside the KKI system, and KKI did not have access to it. They told me that I would have to request it directly from the doctor.  Believe it or not, medical facilities rely on faxes.  Yes, faxes. Not email and not scans, but faxes.  So, since I had to sell my office building and such, I no longer have a fax.  KKI told me to have the doctor send it to them directly. OK. So thanks to the close circle of relationship developed, he did. What a blessing he is. When I then went to ask for it at KKI, I was told I had to go through a records request through the main hospital. The report was right there on the fax machine!

 

Well, I love KKI outpatient with our pysiatrist and her team, but this was unbelievable bureaucracy again that I really bristle about. Afterall, I was the one who had the document sent on their consent to be nothing but a place for me to pick it up, like Kinkos or Staples, because they had told me I could. I was a bit assertive emphasizing it was Archer’s record to begin with, his property, we owned that document. The document was finally given to me but only after I blew up and said go get the doctor in charge. But stuff like that continues.  It’s so heavily rules-oriented that the rules often don’t make sense. And it takes so much energy that would be so much better spent in other ways to explain to a number of people why that is so. Not that many people see the big picture and see the whole system. I do not know what other families do who have children with complex medical needs and who need to do a lot of medical coordination and orchestrating.  I guess they do what I do and blow their tops every once inawhile. God bless them. It’s tiring. Thank goodness for the precious words, I am sorry. I had to say them to our PT whom I took out my frustrated request on. Thank goodness for her forgiveness.

 

The system can harden a parent pretty easily. Or make it too hard that I imagine they just check out. I don’t want either to happen to me. And it so easily could.

 

So, I have learned to ask, sometimes with some authority, on many occasions for Archer’s records whatever they are if they are significant in what might be relied upon by other doctors or ought to be known. I have asked right then at the time of visit when it is going into his chart, or for permission right then and there to take pictures on my iphone of e.g, his xrays, even before they are read by a radiologist, or to use the video function on my iphone to record CT scans and ultrasounds. Some doctors and lab techs, my favorite kind who are all about sharing information, like my wanting to do this and even marvel such as, Oh, what a great use of an iphone, as if it is were a novel idea. It’s really not. But it has been a great use. And, as for the asking for permission to do so, it is after all, our information.  Regardless, I find that I am grateful for their obliging me in juxtaposition to those who have refused to allow me to do this and actually gotten quite agitated that I would want to copy ARher’s medical tests right then and there. Those who protest. and are quite obstinate, usually stammer something about HIPPA. Yes, it’s true, some nurses, and even some attending doctors, but none on the Archer Strong team, have said I could not, that I would have to go through a document request. Are they serious? Yes, they are. They then cite HIPPA.  HIPPA. HIPPA is to protect the patient, and we are the patient.  If they had any idea what it is like to have to go through the document maze and request oddessy for a simple one record, they may understand the folly of what they say on process and the inaccuracy of what they say on the law. I often ask those who protest if they have ever had to do this because if they had, they might understand whose information it is, and how the form no longer fits the function.

 

Things like that cause so many headaches and so much time, unnecessary time, to negotiate and just to have puncture the already tight days. But I do and have learned to be proactive at the get-go. And, those images or copies of notes I have in my phone have saved many a back and forth trip for Archer between doctors, have sped up the time for getting answers to complicated and basic issues, and prevented our cancelling OT or PT for such doctor’s visits which take a great deal of effort and time to attend, and often mean cancelling PT or OT, which we are loathe to do unless Archer is really down with AD or …there’s a lacrosse game.  Smile. So, when I can pull up the image on my phone of a CT scan from way back at Atlanticare in New Jersey and one from Johns Hopkins months later, and another from the PICU more recently all for comparison and to show one doctor assessing one aspect of Archer’s body while needing information about the others, it is quite efficient and effective.

 

And, the need has happened now a few times related to images of Archer’s brain and images of his lungs and it has been invaluable.  You see, the KKI and JHH systems do not talk to each other or interface, and the same with GBMC and JHH and of course the same with the out of state records from Shepherd and Atlanticare, although we have worked to have them in the JHH system. But even though we brought and gave a disc of records to KKI, they were not uploaded successfully for a long time, and the scans of Archers lungs from the other hospital in Atlanta that is adjacent to the Shepherd Center never made it to the records in Maryland either. But I have most of them in my phone by and large. It’s another reason I want to always be the one to go to all these appointments, even though that has been hard with also trying to work in the times when Archer is being taught or in PT/OT.   When a system is established that has a patient’s records from other systems in one central system, that will help tremendously. In some ways it’s a bit creepy from a big brother standpoint. So, if it were I helping the rules, I would leave it up the patient to give consent for this as I suppose some patients may not actually want this. But for us, and for children and the elderly and other complex situations, it would be a game changer, assuming of course one primary ingredient: that the patient as well had equal and easy access to his or her records. It would be so much more efficient, would reduce errors, would reduce a whole lot of medical bills, and would take a lot of the mystery out of medical prognoses as well for patients who might become more engaged in their own care when they could access and see their own records.

 

So the last number of weeks have also involved many conversations with medical folks and follow ups. I am happy to report that at this time, we have a very special relationship with the security guards at Blumberg Children’s Hospital at JHH and GBMC since the van bus does not clear the parking lot and we are put in a special lot, which has an upside as it is closer to the door for Archer. I thought that might make you smile.

 

But here’s something that will make you gasp, a real kicker. You might not believe this but it is true. Archer was rear ended. Yes. Almost two weeks ago when we thought Archer was turning the corner and out of the weeds of being fragile, well enough to return to KKI for PT after staying at home for so long under close monitoring, he and Billy were rear ended by a lady who fell asleep at the wheel. Seriously. Billy was driving Archer downtown cruising down the highway in the Silver Bullet, when bam! a car slammed into the back and side of our bus while Billy was travelling full speed ahead. The force rocked the Bullet, really the big Whale, while Archer’s lower body was strapped into his wheelchair, his upper body was heaved forward and to the side slamming his face into the motorized metal chair lift, leaving his right side cut. I kid you not. Late afternoon on a Friday. Billy called me. I was on a BOLT bus on my way to NYC to see sorority sisters and do a book signing at the Strand Bookstore. The event really shook me up. I felt I should not have left and I felt awful.  Just when we thought we were out of the weeds.  But what I felt was the worst part was how Archer had absolutely no way of defending or protecting his body, no hands and arms that could have braced or buffered the slam, just his face dashed on the metal and how awful that must have been. So vulnerable.  As Billy relayed to me what had happened, I felt a strange feeling like we were having to confront evil again, just when Archer was soaring in art, and we needed to take special care. Billy shared with me he felt the same. We had a prayer circle in NYC for Archer the next morning.

 

Our van bus has a huge dent on the side and back, and the bumper and back of the door are ripped off.  Incredible. But as for Archer, he says he is OK and he just keeps moving. He says it’s just another battle scar. We all see it as another bump, but just a bump in the road. We honestly do not have time to deal with such matters. The lady gave Billy her insurance information and Billy called it in. But three weeks later, our van has still yet to be inspected as the company has insisted that we take our van to an estimator and get it taken care of ourselves and they will issue us a check. They don’t get it. We don’t have time for such things. We need our van. I heard Billy trying to explain this to a claims adjuster. What is wrong with this picture?  When Dewey, Dutch and I had been hit from behind in January in a car rental, someone was out the next day and the company had it taken care of.  Why can’t that happen here. We have a legal claim we know but all we want now is just to have our bus fixed and a loaner, but that is tricky. A loaner. Another Ford or the look alike Mercedes Infinity.

 

We honestly just don’t have time to drive 45 minutes to their body shop and spend a morning doing paper work and not having our bus. Not sure we could get a loaner with a hydraulic lift and high enough for Archer. It’s things like this plus hiring and managing new staff and organizing our new office and attending to house things that we just don’t have time to do right now the way we would usually.  I know we will get there in time. Fixing a wrecked bus etc are important things but not as pressing as AD management, wound care, PT management, nurse management and school management.

 

Ah school.  More systems to navigate. I can see from the length of my update that that will need to be saved for a later entry. It’s quite a story and an ongoing negotiation and collaboration that will amaze you.  Another three legged stool for education: Home and Hospital Baltimore City, Baltimore Polytechnical Institute and McDonogh School.  My chief job: bring them to collaboration and seek their wisdom about their own systems so that Archer is not once again caught in the gaps between systems. I think that could be a theme song for Archer, Caught in the Gap.

 

Oh my goodness, speaking of songs, would you believe that Jackson Breit, the singer songwriter reached out to me in an email. Do you know who he is? He’s an amazing talented musician that Archer found on the internet and posted three of his songs on the playlist Archer made and uploaded onto Soundcloud, a playlist that went sort of viral and a couple producers picked it up as well. The long and short is that Archer has a very good ear and eye for other’s talents and loves to share with others, loves to assemble good things, loves to create. So it felt so right to hear from Jackson and a total gift to us. As it turns out, Jackson’s career has had a boost as a result and it also turns out he is a friend of a friend of a friend, you know how that goes, and he wanted to come do a home concert for Archer. Pretty incredible. So, we arranged to surprise Archer, or sort of surprise Archer. I thought the better of a total surprise under the circumstances. The day Jackson chose to come to Baltimore was, of all days, Mother’s Day. Oy. But we made it work and it was indeed a wonderful mother’s day, and hopefully a wonderful end of day celebration. There were so many people we need to begin to thank, and we thought we would start with those who contributed their skills, materials and financial resources to the renovations of our home for Archer, not to mention their time and their love and care, especially to our contractor and his men and all those who helped me coordinate. So we had a small Home Improvement Gratitude mini concert. Here is a little snippet that gives you the flavor. We are crazy about Jackson and he is an absolutely beautiful person. He and his brother, also a UVA wahoo, were here and Jackson stayed and our children and he played guitar together until midnight. Jackson actually composed a song just for Archer before he came and played it just for him and our family. We were all spellbound. I think maybe Pete recorded it but the rest of us all had phones out of juice by that time. Hopefully the video snippet gives you an idea of his style. What a Mother’s Day, gorgeous and in juxtaposition to the wild bit dark medical weeks we have had. We went as a family to the inner harbor after Mass.

 

mothers day brunch 2016

 

And our evening event with Jackson was outside too. It was one of the first nice sunny days in a long time. We were celebrating more than just home improvements, thank you dear God for everything. I felt like Jesus was there with us and has been walking by Archer’s side, hopefully with Fr. Bruno talking with him regularly on our behalf. Who knows how it all works, spiritually, right. I only have a very limited almost childlike understanding of what I believe in, but I do believe in the presence of God, his son, the Holy Spirit, the protection and comfort of blessed mother Mary and the archangels and in intercession of Fr. Bruno Lanteri. And, I like the image of Archer with Jesus and Bruno out for a stroll. Smile.

Here is Jackson:

jackson breitt

 

 

Since I’ll save the school piece for another time, let me end by telling you about an unexpected silver lining in our time at home and something that was just very uncanny.

 

So you know how Archer focused on his art, in a very intense kind of way while we were home those 10-14 days after the crash in the ER. It was as if he had no tomorrow with the intensity he wanted to do the graphic designs during the periods of reprieve of an hour or three or four between bouts of AD and high blood pressure. We were sort of cocooned all together for about 14 days. It was quite intense. But what Archer produced during that time is really amazing.

 

He told me he didn’t want to be a financial burden. It hurt me so much when he said that. But he was very cheerful and matter of fact about it.  He said he wanted to be successful and do something.  He said he had an idea and a design and wanted to sell clothing starting with T-shirts with the proceeds going into the trust we established.  So, he created Slimeyard Slimes. I think it’s a good look, clever, a bit tongue in cheek, very Archer. Check out www.SlimeyardSlimes.com. Here is his flyer.

slimeyard slimes poster

 

Slimeyard slimes patterns

 

What do you think?

 

He created a little website, and he and Billy talked with a T-shirt manufacturer and voila!  His design is a remake of the snail he originally drew. This time, it’s in graphic design.

 

Please consider telling your friends, tweeting it out, sharing it with other, buying one of Archer’s t-shirts. There is a design for everyone he said, kids and adults. His goal is to sell 10,000. Send him your feedback or ideas too. He is on a roll and not letting much hold him back. He said he is starting with T-shirts to see if people like the design and if so, he wants to do belts, hats, you know the idea. He’s a creative kid and here it is. Slimeyard Slimes.  Smile.

 

He and his art teacher are also now collaborating on a logo and design for a movie production company in LA. Pretty neat. And he has a couple folks saying they would like to commission him for some other art. Kind really. He is soaring in many respects.  Big leaps for him and it keeps him very bouyant, despite not so good MRI’s and other set back events.

 

And here’s the other thing that happened, kind of eerie. But part of something larger I feel happening.  The background is that I was asked about a year ago by the New York State Council of Divorce Mediators to keynote their annual Conference in Saratoga Springs, such event which was just a couple weeks ago, on the heels of Archer’s turning the corner.  Most of the attorneys, judges and mental health professionals in attendance from all over the state of NY and NYC do not know about Archer. At the formal dinner, they surprised me and presented to me with their Lifetime Achievement Award. I was very honored. So here’s what happened. As I walked to the podium to receive the award, a beautiful glass Academy award looking obelisk, I extended my hand to shake the president’s hand as he handed me in my other hand the award. As I glanced at it, I saw it had a small clock in the glass, like a wristwatch size, and the face of the clock was identical to the Roman Numerals face of Archer’s Time Flies By triptic graphic design I sent you a picture of. I was struck by the coincidence as it is not a popular time piece face in 2016. But as I glanced, all of this in a flash as I was thinking what to say upon acceptance, I saw that the hands on the clock were exactly 8:05; it was 8:05pm.  I stared at it and was stunned. I felt the world stop. Like I was in a bubble. I was speechless, I could barely say thank you. I don’t even know that anyone knew what was happening to me. I accepted and returned to my seat at the head table. No speech. Nothing. I was stunned. Isn’t that uncanny, serendipitous, coincidental?

 

Maybe synchronistic. The world is in alignment. When it is, all is well. There are so many signs.

 

So, we get it. the lion-hearted boy wants to contribute and to work towards independence and he is doing all he can with his time. We have to make use of our time as well. We will support all his efforts.

 

It’s easy to support Archer really. You know all the rain we have had, well yesterday, I was driving Archer to McDonogh and as we rounded the bend and passed the vast freshly mowed verdant green fields, he exclaimed,

Hey, Ma, look! The rain has been really good, don’t you think. Everything is so vibrant, really lovely.

 

Yes, Arch, everything is really lovely.

 

And the rain has been good. Surely there is a metaphor there.

 

Be well our dear family and friends.

Please continue to pray for us.  Call upon Fr. Bruno on our behalf.

Count your many blessings. Ah, the ability to breathe the life sustaining air we take in and, yes, the ability to eliminate that which no longer serves us.

 

Say you are sorry when you need to, even when it is hard.

Forgive those who have crossed you. Ask them to forgive you.

 

And consider asking others who accuse you to forgive you even if you didn’t do any wrong. Their accusations are possibly just a carry over from old wounds never attended to, wounds created by others not you. You can help transform that old blocked energy by asking them to forgive you, like a proxy if you will, for they may not know what they are doing when they falsely accuse you. It helps with compassion. And allows us to begin again. Allows them to begin again too.

 

Stay close to God or your holy energy that guides and inspires you to be good, and do good things for others.

 

Be kind to yourself. We need each other.

 

Sending love.

 

Amen.

 

 


 

 

 

Sunday, April 24, 2016

 

Archer Senft

Family & Friends Update

Saturday 4-23-16, DAY 233

 

Reversible.

 

That is the operative word in PRES, the condition we could see on the brain MRI, and that is our hope: reversible.

 

We have been battling high blood pressure (BP) swings and fierce headaches since discharge from the Pediatric Intensive Care Unit Monday.

 

None of our expert team of doctors has an answer for why the PRES continues now many days after it’s first scream with its viscious spikes, including 218/127 BP the night before last. Posterior Reversible Encephalopathy Syndrome (PRES) shows up as brain swelling as a result of high blood pressure. But it is expected to recede with time, a few days, and they are saying now, maybe two weeks. OK, we can take that. It’s been a week solid as of this morning. But it’s the uncertainty also expressed by his care team that is unsettling. They thought they had ruled out everything that could be causing it, UTI treated, violent bowel clean out in PICU (although they discharged us before clear so that still haunts me), scans and xrays of organs, EKG of heart and EEG of other etc.) Our lion hearted boy is strong and determined and positive, but for the first time, I sensed a seed of doubt, of panic, of… fear. When the spikes occur, and the seering headache pain takes over, he sometimes will thrash his head left and right but it is so violent that the first time he did it at home after discharge Monday afternoon, I was terrified he was about to have another seizure as that is what he was doing before the seizure, except with the seizure he cried out, I can’t see! My vision is blurry! My body is numb! And then he seized. Oh my God, it was awful for three minutes. I’ve never seen a seizure.

 

I asked him later about the sensation he had when he cried out, My body is numb! And he said it was like pins and needles everywhere. I asked, Everywhere? As in, you could feel your legs and feet?

 

He said, Everywhere.

 

They said at the ER that it was an aura he had, a precognitive knowing something was about to happen, but Archer was telling what was happening. I don’t yet know what to make of that electricity he felt surging in his body, but we don’t want to have another.

 

But even then, last weekend Friday night/Saturday morning when that happened, he didn’t have BP in the 200’s. His BP was in the 180’s. So, as it has spiked even higher since we have been home, we have clearly not ruled out everything. What is it? The expert team is out of ideas except to manage it and focus on Reversible.

 

It was during the 218/117 BP episode Thursday night that for the first time ever, ever in this entire Spinal Cord Injury (SCI) journey, that Archer’s response was different, although similar to the moments before the seizure where the terror that something very wrong was happening was in his eyes. This week he he cried out, sounding almost like a sort of lament as he wailed, Why is this happening to me?

 

It frightened me. It was unlike him to respond like that. We know this pain is bad for him, but his plea was more than a response to intense vice gripping head pain.

 

It was like he was pleading with God and begging for an answer, the kind of question that comes when the seed of doubt is taking root. I believe he did not ask it intellectually as much as he meant, Is my bright future where I rely so much on the knowing and belief that my brain is not damaged, is that now changing?

 

Yes, I think that is what this last week has been about and that, well, that is really what is most disturbing. It’s a lament really not so much asking when the intense crippling pain will subside, although it includes that as well, but it’s a plea for mercy. Mercy, that whatever it is will not cause any permanent brain damage. I think that is why it has been so difficult this week, on top of the medical managing.

 

It is the year of Mercy as declared by Pope Francis. Please pray for mercy for Archer. Please pray very hard.

 

Archer is showing he can and will endure, but we are in such need of reprieve so he does not have long term damage. During the times of short reprieve, as they do come and they happen as quickly as the headache began, it’s really crazy. Of course they happen quickly and I think Archer is very grateful and while you would think he is exhausted, he is as sparkly as ever, maybe even more sparkly in an uncanny way, a way that is so fresh and pure as he laughs and is funny and… works on his graphic designs as if time were running out. Fervently. More on that later.

 

I have quietly asked him if he is asking God and Fr. Bruno Lanteri for intercession, because I know I am, again and again. I don’t know about Archer’s interior life at this point however. The intimacy of just the two of us or three of us when Billy was there too all those months in the hospital room has changed. It’s a good change, all part of recovery. But our talk has shifted to things more worldly now that he has been feeling so good and our lives have been dominated by the coordination and advocacy for health coverage and Medicaid and social security and educational and doctor coordination etc. It too is constant. It’s just constant. But it is so very very different from the constant that we used to have. That constant was on vigilance having to do with life and death. This constant is more on well-being and creating a lasting foundation. With all these external, more worldly things, perhaps we need to be more purposeful in our collective prayer it occurs to me. More than our prayers over meals. It is always a good thing, whenever two or more or gathered in my name as was said.

 

I cling to the belief that like so many other aspects of this journey, drowning, heart attacks, lungs collapsing, inability to breathe on his own, inability to eat, inability to speak, and on it goes as you know so well, that this PRES and high blood pressure is just a passing set back. A bump. I am trying to discern if it is a new fork in the road. I don’t think so. Although it might be a spiritual fork in the road for Archer and how he chooses to respond to it, relying on God or not. An initiation into manhood. He is not a young boy anymore. Not even really a teenager in many respects mentally. But a fork in the road medically, I hope not. I don’t think so. I believe that. I hope Archer does as well. This PRES and anything else in the brain will not set him back we pray. We hope.

 

The deeply disturbing question just calls to question the real question: what help does Archer need and we all need to sustain our hope in this time when thoughts of despair creep in creating a little fissure in the armor of hope for recovery. What has been going so well, almost surreally well, has just been pierced and we don’t know why. The unknowing is what is haunting him. His response will be what defines his recovery.

 

I reminded him he will live, and he will walk someday. He smiles.

 

And when we eat and say grace, he doesn’t race through the words as he may have done as a child, the child he was before August 5. No, I have noticed since we have returned home and have our meals together that he is very deliberate as he says in unison with us, In the name of the Father..the Son.. and the Holy Spirit…bless us, oh Lord, …with these thy gifts…which we are about to receive… from thy bounty,… through Christ our lord…. Amen.

 

So when the spike in BP comes, we do not question or fight why it persists at that moment, it just is, and Billy and I act very quickly now with our regime. We smear ¾ to an inch of nitroglycerin paste on his chest, one of us starts the BP cuff readings using the electric BP monitor and cuff we slip onto his limp arm, the device you bought for us, thank you, when we arrived home. We act very quickly and the other of us presses Archer’s temples and forehead between our hands, like a self imposed vice grip, but Billy does it best now as he essentially puts Archer’s head into a head lock, not at the neck but around the top of the head, not easy to do bedside, as tightly as he can since Archer has told us that counter-pressure provides some relief. And even if just a movement from a horrific “10” to a “9” on the verbal pain scale, the grip stops Arch from thrashing his head from side to side thus lessening the unintended but resulting neck and shoulder pain later. Gosh that pain must be horrific for him to thrash like that. It takes two of us. And it has been bedside vigilance since Monday night all week, 24-7.

 

As an aside, it was very emotionally intense in the PICU with the many meetings with a new neuro team, and the irony that once a year rotation of the attending neurologist was a doc from KKI, so we had the bridge we needed to the knowledge of SCI with the brain team. As we listened intensely learning more about the MRI results, and helping Archer cope with every test to rule out causes for the PRES including a radical bowel clean out I was mentioned over about 12 hours or more with the insertion of an NG nose tube, more xrays, more tests, more techs, cardiac pace maker doctors, thank goodness again we had records at our fingertips in my notes of his type of pace maker to speed the process, the examinations, the neuro team marveling at how cognitively well he is doing, and returning with interns and others, more questions and consults and meetings and taking care of Archer’s room again to be a quiet place of healing as we have learned to shut the glass doors and the curtain. They discharged us sending us on our way that the swelling in the brain would lessen in a couple to a few days.

 

I didn’t have time to even call our insurance company Blue Cross Blue Shield/Care First (BCBS) until Tuesday morning after a rough Monday night at home once discharged from the PICU. The rough and dangerous night surprised everyone.

 

I was asking our pediatric catastrophic BCBS case manager if we could use the three nights of night nursing we had not used, because of being in the ER and PICU, to help us during the day on Tuesday, Wednesday and Thursday of this past week to monitor Archer and respond to his BP spikes and headaches and ongoing bowel and urinary needs, emphasizing that it would not cost them any more money and could prevent a future trip to the ER. It was denied. I did not have the time or energy this week to challenge that as the time was immediate and of the essence, and it was unfolding as we asked.

 

It would have been very helpful to have had help, another watchful eye. What happened was that we had two more days of 170’s BP with our management regime and then back to the 110’s where Archer usually is, and where we all breathe a sigh of relief, and then, on Thursday night, Archer’s BP soared to 218/117 BP.

 

If you don’t know, a BP that high as I am learning is emergency time, stroke, heart attack etc. Billy and I worked throughout the night to regulate him with all the tools we had, especially hope and breath. Breathe, Archer. Focus on your breath. It will pass. Focus on your breath. Even when he screams in rebellion and thrashes, he will learn in time how the breath will sustain him in this panic too. As I write I just realized I need to draw that nexus for him, the panic of not being able to breathe when the ventilator popped off is the same panic that sets in with these headaches. It’s that primitive signal to the brain, Death. And his breath is life. I will talk with him about that.

 

So, it was another difficult night. But this time we wondered how high until we call 911 again.

 

About 4:30am or so, Archer seemed to be resting and we breathed a collective sigh of relief. We returned upstairs delirious and had just rested our heads on our pillows when we heard a siren. Billy jumped up, exhausted and called out, Louise! You called the paramedics? I sat straight up and replied confused, No. Did you call 911? It was a moment of incredible confusion as Billy quickly dressed pulling on his longpants and fumbling in the dark for his shoes to go down and stop them and tell them false alarm. I was too tired and simply put my head back down. But the siren did not stop in front of our house. Billy came back inside and said I think it might be our next door neighbors but he wasn’t sure as we could hear the siren very close but could not see it. He went back outside and I said a little prayer for our next door neighbor, confused about what it might be. Billy raced back in and said, Oh my God, Louise, come! We saw the gastly and horrible fire. The tops of flames on the backside of the house, licking the backside, as if it was outside, of our across the street neighbor’s house. Oh my God. Billy ran out again. The siren was a firetruck. I stared at those flames and immediately prayed a rosary very very fervently, now about 5am, asking mother Mary to wrap her arms around that house and family and children and keep them safe and bring them to safety. I was praying so hard and was so delirious from our night with Archer that I stumbled on the words to my favorite prayer. I closed my eyes and visualized her, larger than their whole house with her outstretched arms. I thought I would crash. Billy came back to tell me the family and children were all successfully out. Oh, thank you, God. I think I about passed out in a sleep delirium then but I recall the four alarms. I never knew exactly what that meant in the modern day, a four alarm fire. I recall from the firehouse in Cape May where I’d take the children when they were little that the old firehouse had bells that would ring and clamor alerting the next fire house or the firehouse across town or in the next town to come to the aid. Well, the night before last, what I heard in those early hours of the day was the big sound of someone laying on the horn of a fire truck for a long time, then it stopped, and then it was answered by another long horn of another truck on its way to help. Please pray for our neighbors. For mercy.

 

It was quite a night.

 

For us, it lead to Archer’s doctors asking that we bring him back to the hospital. That was yesterday late afternoon. Billy drove and he and Arch headed back to Johns Hopkins Hospital, Blumberg Children’s for another CT scan of the abdomen and pelvis. It was the first time we had taken Archer out of the house all week, and they left and got into the bus with Archer covered in only his McDonogh blanket waist down as we have not been able to touch his body much including getting him dressed without setting off the BP spikes. Arch was stabilized again and to give you an idea of what he is like for the few hours when he is not in the BP spike, he returns to his ol’ self. Whether it was trying to shower him and wanting to make sure no one comes in, or getting onto the bus naked, covered with a throw blanket, and I would ask how I could help if he, wanted to put on clothes, for instance, he wryly looked at us and said, in a Southern drawl, What we’ve got here is a failure to communicate. Remember that line from Cool Hand Luke?

 

Always funny. Got it. Doesn’t need that kind of help. He knows what his body needs and doesn’t.

 

I took the opportunity to go and watch Dutch in a lacrosse game, the first I have seen the entire season. My thoughts were that it just ain’t right that I had not been to a game yet this season. I do after all have more than one child. What I need are just a few more hours in the day, but I know you feel that way at times too. Don’t you? When there is just so much that needs to be taken care of. Or so much I’d like to do. I have actually felt that most of my life since I was a young girl, my mom having to force me to turn off the lights and go to bed at night. I remember years of sneaking a flashlight under my pillow and using it to do math homework or to write in my journal after she had gone back to bed.

 

I need some flashlights now. Extra time would be helpful. While we are racing against the clock it seems, Archer in the lead on that race, we are also trying to be present. Present for all that needs our attention, including the moment as we are in it. And discerning what does not need our attention, at least at this moment. It’s an interesting dance. Reminder: Dutch needs our attention. Dutch is as much a trooper as is Archer. He is a loving and faithful and loyal son and brother. He adores Archer and vice versa and is very much a part of Archer’s recovery. Not once has he complained. And he’s been through a lot too. Thank you, Dutch. Thank you, God, for giving us such a wonderful son.

 

Even with those unselfish characteristics, the soul and spirit needs personalized nourishment. Especially at age 13 when the changes are rapid. Like growing 6 inches since summer time that has caused a lot of knee joint pain and learning that he has Osgood Schlatter disease after I took him to a different hospital for x-rays and physical therapy (PT) a couple weeks ago. Yes, for all the days we spend at KKI, their focus of course is on PT for SCI and brain injury and MS, not PT for kids with, well, essentially growing pains. Nothing serious just a name they give it now, but still his pediatrician recommended PT. Another doctor and another PT group to manage the last couple weeks. As much as I tried, I could not schedule Dutch for PT at KKI when Archer was there. Not even with a personal trainer. Ok, I didn’t push it; it’s very understandable. So, we went to Union Memorial and got some exercises and he’ll be better soon they said. Dutch has had relief already with certain stretches, so we are grateful.

 

Ah, if it’s not one thing, it’s another. It just tugged at my heart though that our little Dutch has suffered quietly, as it turns out since last fall. I asked him when it had started and how come he didn’t tell me sooner, and he said, You were in Atlanta.

 

That hurt. I mean, he was totally correct. I was. But I felt bad. That’s what I mean about needing more hours in the day. Or time travel or like Bewitch, remember that wonderful TV show in the 70s? I wish I could wrinkle my nose and all kinds of things would get done or happen. I loved that show.

 

While Archer’s medical team and we together muddle through this more acute chapter, none of us having any answers for the continuing wild fluctuations in BP, we are all learning the patterns as Billy and I have a recording system in place as if we were lab students conducting a most important science experiment. We now think there are patterns and they are related to movement of Archer’s body. Or movement of those parts of the body that have something else going on on the inside if you ask me. But he’s very emotionally sensitive to any movement now, protecting against the unknown causes of the surges. Of course, the movement we do to Archer’s body since he cannot move it himself is the movement required for life, for health. This adds a whole ‘nother tricky aspect to this situation as he has not wanted anyone to touch him at all. At all, except for the counter-pressure on his head.

 

That means we are in a real dilemma because he refuses weight shifts and his bowel program and flushing his supra pubic tube and all the things that have to be done to keep Archer healthy and without getting the dreaded bed sores he is refusing. He knows his body best and we want to follow his lead. But he needs these things too. It is a dilemma.

 

I believe he is afraid, who wouldn’t be, to have anyone do anything that would trigger the agonizing headaches that have lasted for many hours, and now last 15-45 minutes in the acute phase and then peter out with management. His fear is very human and we share it secretly with him. Perhaps not so secretively. Another dilemma. You know, the hopeful positive encouraging countenance that parents provide their child when the child feels weakened and is afraid. But in our situation of short term or long term damage, which we pray is not the outcome, fear cannot be the basis of our decision making. It can inform us, but not drive us. Fear has a way of doing that I believe. I have seen it over and over again in my mediation practice. Isn’t it true? If you look at some of the decisions you have made out of fear, they are not typically the best. Same for me. I mean, our brains shut down when we are experiencing fear. The oxygen doesn’t flow like it usually does. We are actually wired that way, as human beings, as a means to protect us. It’s true. It’s why we can’t think clearly and instead move on fight or flight instincts, and less well-known but recently documented freeze and feint instincts. But regarding human higher functioning decision making cognitive capacity, when we are in fear mode, our minds race or they shut down and regardless of which way we are hijacked, our decisions are more fight or flight.

 

I don’t want Arch to be in that yo-yo, just like I don’t want him to be in the trips to the ER yo-yo. Just like I don’t want us to live to regret that we did not act as we should have or could have. All of this takes such incredible discernment. Billy and I are trying hard to stay on top of it all. Please pray for our discernment today and in the days ahead as we continue to manage and watch and remain with Archer. Watch and pray. I have been praying as hard for courage and stamina as much as I pray for Reversible for Arch.

 

I do believe with all my heart that this too will pass.

 

Of course it will. It’s all in the way we respond.

 

This past week has brought a new wave of intense telephone calls and email exchanges hour by hour information with his physicians. I see how my own brain works as I surgically scan my phone and account each 10-15 minutes for direction related to the information we are providing. The communication with the team is now excellent, we now have an Archer Strong team and it feels good. Some even make house calls. They are really extraordinary.

 

To put it into perspective, Archer has 14 medical expert specialists, yes, that is how many doctors and alternative medicine providers I coordinate and stay in contact with. It’s really incredible and we are so grateful to them. From his acupuncture (looking for someone who can come to our house who is Medicaid approved if and when he becomes Medicaid approved; also looking for massage Medicaid approved as we prepare for that possibility), reflexology and acupressure, homeopathy and nutrition, we interface with his providers and experts on a monthly basis like urology, or a few times in a week when there is a problem, and monthly for pulmonary but again intensely when Archer has a breathing problem which he has not had since discharge!, and some as needed like cardiology which we relied on greatly during the three days in the PICU as Archer’s heart was throwing off PVCs in patterns no one could understand, and in ongoing consultation monitoring if and when we might be able to have his pacemaker removed, to endrocrinology and nephrology, who are helping us understand and work with his skeleton and calcium and kidney stones that are forming as he sadly loses bone density as a lack of walking around and needing it, to dermatology to help with his skin, to others weekly like podiatry to help with ingrown nails, nutrition and the alternatives, some daily like his wound care specialists for the blisters on the bottoms of his feet, and his internist, neurologist and spine doctor, who have been amazing this week. They are all an amazing team, flexing when we need it, expanding their ability to see us when it’s critical and receding back when we are in reprieve or have returned to base line. It is constant. And it changes. In fact, it is constantly changing. And we just have to stay on top of it. No doctor schedules for you or puts you in their system automatically. It’s not that easy. If you want or need to see a doctor, as you well know, you have to initiate. No different for Archer even though they say things like I’ll see you next week or see you next month. We need to make sure that happens. It’s all about paying attention and being responsive on both ends.

 

So, the ones who are mainly monitoring his high BP condition are his neurologist and his spine doctor, in close communication through us, with his internist.

 

Why you might ask are we looking to a neurologist and brain science team and a spine doctor for high blood pressure issues. Well, you see, as we are discovering, everything in Archer’s body is perfectly healthy. Everything. They runs tests on his liver and pancreas and kidney and heart and all indicate all is normal and indeed very healthy. So, those organs are not his issue as the process of ruling things out since we arrived in the Emergency Room last Friday night and the wee hours of Saturday have shown. No, the issue is regulation. Nerve regulation, or better said, the lack of. It’s hard to comprehend really. How is it that everything can be perfectly healthy but not work? I guess I would liken it to his lacking the electrical impulse to get the finely crafted and beautifully assembled machine that operates on electricity to work.

 

But you know, in an odd way, it occurs to me that while no one has answers and it’s very stressful for all of us managing this condition at this time, perhaps, just perhaps this level of autonomic disregulation—a term they are now using to refer to not only Archer’s AD (autonomic dysreflexia), a condition of all quadriplegics to one extent or another which you know about now because we have talked about it a lot as the condition which causes the blood pressure to go up, but which also encompasses the erratic spikes and wide swings from intense upward pressure to plummeting very low, 70/40 —is related to … well, I don’t know, but perhaps… what we are seeing is related to the process of the Creative Miracle.

 

I say that because a lot of positive movement and activity is happening for Archer otherwise. He has been engaged in the transition and delicate balance of an intense rehab schedule, education, art and re-entry back into some aspects of life as a high schooler since our discharge from the inpatient side of this journey February 4. A lot. It’s why I have not talked with you for so long. It’s been as intense or packed this past week as it has been the prior four.

 

Is his body rewiring itself?

 

I honestly ask myself that. I do not know. But I think it is possible.

 

Everything is possible.

 

Don’t you agree? I think you do. It’s true. Things you could not have imagined. Happen. Science is in our favor. Curiosity is in our favor. Our hand selected doctor team with their sharp intellect, keen interest and profound humility are in our favor. Their humility that is not, We don’t know so too bad. It’s more of a, We don’t know exactly but we think a, b, and c. Let’s try a and see how it goes for a day or two.

 

That is very powerful actually. It’s very personalized. It sometimes works and sometimes does not. But Archer, Billy and I learn new things about Archer’s body and situation and have more data to go by. The uncertainty, especially heightened in the crescendo of the pain crises, is tempered by the resolve to think critically and push forward when Archer’s body is re-stabilized for the few hours we have between bouts.

 

We will see ourselves through this time, learn new things as we go, tap deeper into our own emotional reserves and recommit to staying connected to each other even though I have thought over the last few weeks that we were holding things together by mere threads.

 

Thank you for your prayers. Honestly. They carry Archer. They carry us.

 

So, to give you a window into the prior four weeks as I have tapped away on my iPhone notes app, here are a some starts I intended to send out but then lost the time to do so. There is not time to look over them, so please forgive me in haste as I send this to you today, loaded with snippets over the last weeks. I have missed connecting with you.

 

Tuesday 4-12-16, DAY 222

 

(that’s when I began. Now it’s Friday, 4-15-16, DAY 225).

 

Well, in real time, now it’s Saturday, but not 4-16-16 but rather Saturday, 4-23-16, DAY 233.

 

That’s how it’s been since we last connected. Not enough hours in the day. Time is flying by.

 

Flying by. We are busy living fully into the window of time that other quad families have told us is so critical: the first twenty four (24) months.

 

That is our time line and it occupies every waking moment.

 

There is also God’s time, and it is not a line. Again, another opportunity to live on the dimension of the here and now in this lifetime, replete with its limitations as well as its potential, and to live in the faith of God’s time.

 

It’s actually comforting.

 

We hit the 8th month mark a week ago. Hard to believe. Eight months. April 5. That by itself is a mile marker for us. We have all traveled so far. And today is Day 222. Remember that TV show in the ‘70’s, Room 222? It was all about high school. Well, I have a lot to tell you all about high school and Archer as we have been consumed with many things, including many aspects of his school.

 

For starters, Archer is very much back to art. In fact, he’s an art maniac.

 

Since the lion graphic, Archer’s first new piece of art he produced in a new medium for him, digital, he has been on a roll. Ha! On a roll, that’s funny isn’t it. How appropriate that expression is. Folks in power chairs or wheel chairs roll. Glory day! Isn’t it wonderful! McDonogh’s art department has been and is amazing. He meets daily in the digital art room with the digital art teacher, 1:1. The room is on the third floor of the new St. John building, is large, outlined in long built in table desks with computers, screens and color printers with a cluster of desks in the middle. The director of the department and two of the art teachers have given very generously of their time, beginning with the beginning. They sat with Archer to figure out what he might do and be supportive. It has been the most amazing teaching to witness, coaxing the artist within Archer back into the room. There is no other art class being taught when we arrive each day. They have carved out this 90 minute time period between our Poly home schooling and Archer’s English and then afternoon with PT and OT. That unto itself is such a gift to us. We have created a back to back schedule that really works: school, art and physical therapy at KKI, every day.

 

So the three of them with Archer gather in the digital room as if sitting in the living room of one, and, well, they talk art. They ask Archer questions and he contributes his thinking and his ideas. He asks them questions and they share their wisdom, retrieving books and naming cool videos on artists whose work might inspire him based on what he shares with them. And the books and the videos do inspire him. I just love them all so much for that. I am, our whole family is, so deeply grateful for them and their spirit. The director told Archer, Archer, art is everywhere. It’s all around you. Everywhere you look, you can see art. It’s a way of life.

 

That is how she thinks. And she’s immensely patient. Another of the teachers who has taught Archer before tells Archer about other artists who are not digital creators but have ways in which they have seen the world and captured it paint and photography. But that it was not random. She names artists I have never heard of, urban artists and more modern artists and she encourages Archer to consider a medium he may not have tried before but can now such as photography and she illustrates her idea with stories. She says things like, Archer, what you have is an artist’s eye. So, it doesn’t matter what medium you choose, you have the eye. And many artists had assistants to help them execute what their eye saw.

 

She gave Archer the example a famous photographer and told him how the artist does not have to work alone but can have a team, others assisting, even taking pictures for him as she explained it’s the artist who sees what needs to be taken, sculpted, and said the photographer would tell his assistants when to click. He could still be the photographer even if he was not manning the camera. Archer said, Yeah, I remember when my mom would take us to the Baltimore Museum of Art on half days and we saw this glass artist, Chihuly. He had an eye patch and would direct his crew on how to blow the glass. I could tell Archer’s wheels were spinning in his head. That was a very expansive morning for Archer, again, what a gift of love for her to say that.

 

As for the digital art teacher. Well, he is a tall glass of cool water on a hot day as one of my great aunts used to say. They all listen very carefully to each other and to what Archer says. I feel it in my heart that they are totally open as there is this quality of emergent expectation. It is not forced or heavy. It is incredibly respectful and it is expansive. I recall after the first week of these serious conversations when Archer would return each day to art with something he had begun to try how his decision to dedicate his energies at least for now to digital art began to emerge. And the director declared in perfect mirroring of what was emerging, OK, Archer, so you will have an Advanced Digital Art Independent Study. It seized the moment. The naming of it was very good.

 

Just like I learned to do from a lecture I attended on childrearing when the children were young, whatever they were interested in as very young children, give them the tools they need to immerse themselves and experiment with their interest. And when they tired of that interest, never berate them for the time or money you spent on the now old interest, but feed their next interest to the best of your ability. That was really good advice from I think Dr. Barry Brazelton on raising happy kids, and I took it to heart. Surrounding Paula with trips to the library for more books on American Indians and a Tepee we painted as a family when she was so into Native Americans, and then when she turned her sights to gorillas, trips to the zoo and books on them, then it was singing and she auditioned for the Maryland Children’s Choir and was told she had perfect pitch but decided not to sing in favor of sports, then it was craft design with many trips to Michaels as she would make many thoughtful boxes or frames for her friends, then it was everything Harry Potter and on it goes. Probably the same progression for many of your daughters or something similar.

 

For Petey, it was Legos and fiddle sticks then lacrosse sticks, and then it was Legos and scooters, then in line skates and then it was Legos with electrical wires and skateboards, many of them, fat ones and long ones, new wheel bearings because the others were used to a nub, new boards with the coolest designs on them when the others were so used they had splinters, then it was surfing and surf boards, and cool designs on them, then stickers, he loved stickers, the it was back to skateboarding and he and Billy knocked out a wall in our old carriage house garage and built a ramp, then it was graffiti and we gave him cans of many colors of spray paint and he went to town on the inside of our garage and painting pieces of furniture kids would bring over, and then it was snowboards, and then it was a surge of piano once he discovered songs on the internet, then it was guitar, and on it goes. He’s now an engineer.

 

For Dewey it was books, book series, fantasy for years, then more serious, then history, he would read and reread and then abandon one variety only to find a new author he liked, then he was really into his piano playing, then he was into collections, lacrosse sticks, socks, little civil war characters, travel spoons, the he returned to piano, then the ukele.

 

For Dutch it’s been Legos, Legos starwars, then Legos Harry Potter, then Legos Indiana Jones, then Legos it didn’t matter what kind, then snowglobes, always balls but especially soccer balls, every imaginable type of ball, nerf to hard, then soccer jerseys, then school plays. For all the kids it’s been a lot of art supplies, and cardboard boxes and posterboard and construction paper. What about for you? Can you recall the things you were totally immersed in as a child? What were they? fads, trends, and other basic things that were food for your young soul. What are your interests now and how do you feed them? I imagine we need to explore many interests, not just one, but there likely emerges out of the string of experiences and passing interests one or two that really make you happy. And you surround yourself with the tools you need to continue to fill your life with them, and like children, you may change it up too. And you hopefully surround yourself with the people who see your interests, notice you and what you love and support you.

 

For Archer, in addition to Legos and lacrosse sticks and books, it was crayons of every size and color, then watercolor paints, then it was markers, then it was colored pencils for a couple years, then his years of acrylic paint, then it was more expensive markers for surfboard designs. How else are we to find what drives us and makes us sing and happy if we cannot try many things. What a gift to have that journey supported, and that is exactly what is happening with Archer in the McDonogh art department. And so for now, it’s digital art. And the digital art teacher is, well, as one of my now deceased great aunts from Tidewater Virginia would say, He’s a sip of cool water from a tall glass on a hot summer day. He is just exactly what is bringing Archer refreshment daily.

 

Here is a picture of what one of those mornings of art discussion looked like as the three teachers were figuring out with Archer what he wanted to focus on, before he had landed on digital. Dewey, in the background, was home for spring break and had come with us. The digital art teacher is waiting for a program to load to show Archer while the others have pulled art books out off the shelves in their art rooms.

 

IMG_1707

 

 

With Archer choosing digital art, he has been hard at work producing various designs the last couple weeks. Last week a sweet conversation ensued between Archer and his digital teacher (M), and I happened to be there as I had not exited yet to give them their own time which I happily do so that I can then make or return the many phone calls needed at this juncture of piecing together all the related threads for Archer’s new life. I should first tell you that what has happened in the last couple weeks during this daily art time is nothing short of amazing.

 

Archer essentially works 1:1 with the digital teacher and while I exit the room most days to let them do their thing, it’s so beautiful to be with them when I’m there. They interact like two composers. I imagine a Rogers and Hammerstein, or any talented team. Archer brings what he has been working on, swipes and uses the special button on his ipad to open up his files, shows and explains what he’s done, and the two of them talk about…technique. Of course, from the perspective of a mom, I love to be in that digital art room, listening in like a fly on the wall. It’s just the two of them and the conversations between Arch and his teacher are, well, like colleagues. There is incredible love and respect flowing in both directions and Archer is thriving.

 

One of the conversations was this:

 

M: Arch, show me what you’ve got today.

 

Archer opened his program and up popped a logo he’s been working on for his Snail Project. Yes, that’s right, one of the things Archer is doing for those of you who were kind enough at fundraisers to purchase his first drawing, the little snail, is to design a logo and create an art project for others to help him with design applications of the snail design for clothing and fabric. Archer and Billy have put their entrepreneurial heads together and the Snail Project is in the works. Archer was, as many of you know, one of those kids who was born entrepreneurial. He had rock painting alongside his lemonade stands when he was six and seven, and then he had little water color paintings when he was eight and nine, then he had drawings of characters, mainly sports heroes and players he had seen in Sports Illustrated and Lax World Magazine, but also a lot of characters he made up, like cartoons, that he would sell them with his lemonade, and when he outgrew that, he began selling sports jerseys to friends giving them choices of all the jerseys he selected which he thought were the best colors and designs. He liked things just so and he’s always wanted to give people quality. Archer has always had an aesthetic eye and he likes things that are pleasing to his eye. So, that same standard is coming through again on the Snail Project. It’s so interesting to have the time to reflect on these things as I am with him observing so much these days out of necessity with all the bizillion assessments we have had the last couple weeks and another two weeks to go. I know it will not be like this thank Heaven for long and while it is a stressful time for our family, it is also a luxury to reflect back on Archer’s childhood and see the same kid and how, like any kid growing up, what he did as a boy has shaped who he is becoming as a young man.

 

I have realized that whatever Archer does with the Snail Project, he is likely to be consistent in his selling method—low bar to entry or to purchase, or getting something extra that he has created. I have a memory of when I noticed the price of lemonade at other kids’ lemonade stands, say ten years ago when he was seven years old, had gone up to 25 cents a cup. I remember telling Archer and his commenting that 25 cents was too much. So, Archer kept his price at 10 cents. He still made money he said.

 

But from the beginning of his entrepreneurial ventures, he has been giving away art. In the early days, he would have various things he had made laid on the sidewalk and tell customers when they came to buy his lemonade that they could also choose a picture. It’s just who Archer is. I remember when next to his Lemonade 10c sign, he made another sign, Free Rocks or Free Shells. Depending on what he had painted, he would tell drink buyers they could pick out any rock or shell of their choice. Children buyers would pour over the selection with care and delight while many adult buyers would glance and say nothing or when Archer said, You can have one, they’re free,

 

They would say things like, Oh, no that’s alright. You keep the pretty rocks.

 

Archer seemed puzzled by this. He wanted to give them art. He wanted them to have his creations. And they didn’t get that.

 

It reminds me now of what my mom always told me as I was growing up and I was a pretty confident kid and in many leadership roles and I also grew up in the bra burning women lib days when feminist thinking was emerging, I myself studying Women’s Studies as a Minor in college.

 

She would say to me, You remember young lady, it’s a good thing for you to allow a man to open your door, or to carry something for you. It’s kind of him to offer and gracious of you to accept.

 

Basic good manners she would say. As Dolley Madison is our ancestor. But my mom really impressed that on me, even to this day, and so, the kneejerk responses to others’ kind offers, No, I’m fine, or, Thanks, but we’re ok, are really not always gracious. I think she was right. She probably read it in the original Etiquette book by Emily Post, a book she returned to regularly like a well-used cookbook. Basic kindness is to offer, if you have the ability, and being generous is accepting, which requires a certain humility that when given in the form of acceptance creates well-being as an outcome.

 

As human beings, we like and need to give to each other in these ways. It’s part of the human experience to feel connected, and safe. When the grown up lemonade stand customers did not take one of Archer’s creations, at some level it was not generous which is probably the very opposite of what they would have intended, right? They saw a little kid with a bunch of painted rocks and shells and pieces of mini notebook paper torn out with drawings on them. Their not taking would leave more for others, Ok, I get that, but as I see it now, I don’t think that’s what Archer wanted. He wanted everyone to have lemonade plus something else. He wanted everyone to have art. He was giving something of himself. And when customers left with his creations, he was very pleased, no strings attached, not even payment.

 

Giving away art and making money were not mutually exclusive goals however for Arch. He also loved to count up how much money he had earned. I remember one time I asked at the end of his day as he was stacking up his nickels, dimes and quarters and I had earlier run down the block to Eddies, our local grocery, to get more lemonade mix and lemons since we had run out and he was having a run on customers, if he wanted to pay for the lemonade mix. Oh, the look on his little face. I could see that I had wounded him in some way, I can’t explain it. The look he flashed me with his huge saucer blue eyes –those were the days when Archer could still look surprised many times a day as he was still deaf in one ear with white noise at times in the other — seemed to be a combination of genuine disbelief and confusion. I remember feeling awful not realizing the impact my asking would have. I assured him he would not have to reimburse us because we liked that he had his lemonade stand, but I wanted our young entrepreneur, then in his third or fourth year of the lemonade business on hot days, to understand the cost of goods so he could be aware since all the tea leaves pointed to his likely having many future ventures. He was probably eight or nine years old.

 

I bet this might be jogging your memory and perhaps you too had or have a little entrepreuner in your household. Together we made a list of what he needed for his lemonade stand. We checked off what we already had at home like table, table cloth, chair, shoe box for money, trash can for empty paper cups, wet towel for spills, pitcher, cooler, ice, lemons (Billy would squeeze a few into his lemonade for really good flavor, sometimes an orange too), paint, paper, rocks, shells and so on, and what we needed to buy at the store, like lemonade mix and cups. I’ll never forget how he began to appreciate cost, not so much that he had to raise his prices, but what went into things and how he figured out his profit. But the most interesting outcome of that was the new sign he made that read, Lemonade and Art 25c. And he went to town, as my grandmother would have said, making lots of art. So, instead of giving customers the option of picking a rock or a shell or a small painting or drawing for free, he began handing each customer one of his creations, like a receipt, given in the spirit of a gift, but something they had actually paid for. The drink came with a creation. They bought it. That way, his desire for them to have lemonade and something extra was realized.

 

As he got older with whatever he sold, he always knew what his profit margin was and he was very contented with a low margin, as it seemed he just liked the idea of working, creating something pleasing and selling. So, he always kept his prices low at the amount that made it easy for people to purchase, and, he usually went a little extra mile with what they also got. And that is how his sports jerseys business spread like fire and why in the end we had to shut it down. Before the Chinese ebay was created, Archer found on line a Chinese importer from whom he ordered some jerseys. He was fourteen. With his own money saved up from some endeavor, he placed an order and then sold what he had ordered for a profit. Kids liked them. He did this a couple times choosing designs he liked and figuring out which designs they liked most by which ones were left over, which he and his brothers would distribute among themselves to wear. He then talked directly with the manufacturer as we later learned and began taking orders for specific jerseys, specific colors and numbers, and placing orders for those specific jerseys to this manufacturer. Like the lemonade, the cost of goods was pretty cheap, the demand was good and growing, and he would re-sell, still at low prices.

 

What I think Archer liked most was the process. Like the art, he put in hours of effort in ordering and then re-selling. He kept close track of orders and what his customers wanted. He would receive large boxes of goods he had ordered from China and he’d carefully inspect each piece, pulling out ones that had flaws, keeping track in a ledger who purchased which and matching his buyer with the goods across our dining room table. He’d keep track of how long it took each shipment to appear, have on-line conversations with some guy in China, especially when a shipment had a second quality good, negotiate with him to reduce the price next time to make up for the damaged goods, repackage the jerseys in the way he liked them to be presented, smart, precise and clean, and always with care and flair. With each shipment, he’d be up late for a few nights ironing and folding the jerseys very neatly and carefully placing each one in a ziploc bag with the purchaser’s name neatly written on the outside and he’d then push all the air out of the package as best he could to make it sort of vacuum-packed. For those he needed to ship to friends who lived elsewhere, he would be up even later rummaging through one of the closets in the basement where I keep boxes for the children’s art projects and Christmas presents looking for the right size box for the one, two or three jerseys that had been ordered. If he couldn’t find the right size box, he’d cut a box to size and tape it up with precision to fit neatly around his vacuum-packed jerseys to keep the packages manageable for postage and the shirt in mint condition. He would then hand address his shipments using a freehand typeface that he chose and liked and was uniform for all packages. I think he may have also added a drawing to some of the orders, in the Ziploc, just like the old lemonade days.

 

He told me he knew he could have doubled his selling price, but he felt it was too much and that a lot of kids would then not be able to get one. He felt pretty strongly about that. He also had friends at other schools who would send him orders of other kids as word got around. Archer always shared his profits 50-50 for every jersey even when he did the lionshare of the work. It made no matter to Archer. He was happy with his endeavors and has a strong sense of egalitarianism.

 

But when he began getting big boxes of shipments of jerseys that were NFL and soccer jerseys, basically knock off good fakes, we had to shut him down.

 

Archer was crestfallen that he was being shut down and didn’t understand why, but we explained why trademarked jerseys made in China by a manufacturer he had found on the internet at age 14 was not cool. For many reasons. But you get the idea. His business was so profitable because he put in the quality and care, and kept it all affordable. One thing about Archer is that he was born a hard worker. And when you’re young, that hard work is put into things you naturally love and love to do.

 

Cooking was no different once he discovered he could make something and it actually tasted very good, and also looked very good. Archer specializes in quality and presentation. He lighted on desserts at home and he would get a recipe off the internet, usually something a bit complicated like a cake that requires a spring pan or a cheesecake that requires a cheesecloth, so we were adding pieces of cooking equipment to our kitchen repertoire regularly because Archer’s recipes called for it. It was all very worth it as he would delight our family and our tastebuds with delicious confections. When you eat most of your meals at home, more kitchen familiarity is a natural byproduct. All our kids are good cooks choosing a few things they like to specialize in, but Archer just took his cooking to the next level. The summers Pete worked at the Beach Club as a food runner and thereafter as a lifeguard, about the time Archer was getting too old to have lemonade and art stands, Archer decided he wanted to work too at the Beach Club, but in the kitchen. But he was too young. So, as soon as he was old enough he began as a food runner one summer, then as a runner and kitchen helper the next summer, and then in the kitchen full time, and then running the grill. He’s always worked at something to work his way on up. But his art has always been present. Last summer at the beach club, he took great pride, in his quiet understated way, to create the sandwich or wrap of the day and to make it so that it presented as well as it tasted.

 

He would start in the mornings frying up many pounds of bacon and progress into the day, all day on the hot grill delivering up orders that people loved. Nothing terribly fancy, but all with great care and a love for what he was making routinely or creating anew. This past summer he told us he had really had a good day because Mrs X told him his sandwich was delicious, apparently Mrs X is a bit of a complainer that nothing is ever to her standards. He was elated. Funny to think his goal for a few years was to be in that kitchen on that hot grill which would be the reason for his taking a dip in the ocean on hot August 5. Isn’t that crazy. So, I wonder where that entrepreneurial spirit that loves to please others will take Archer. God has a plan for all of us of course. Ah, I digressed.

 

Where were we…. Back in the digital art department.

 

So Archer showed M, his digital teacher something he was making that had a lot of shapes in hit that Archer had cut out. And his teacher was asking him how he did it.

 

Archer showed him and explained like a formula for how you can take a square or circle or triangle or shape and bend it and cut it out to fill space or create empty space. His teacher had told him how to bend and stretch shapes, but Archer had cut them out very precisely using the tools he could operate with the stylus that we have in his wrist splint that is powered by his bicep strength.

 

His teacher was showing Archer and then Archer was showing his teacher.

 

It was a moment.

 

They became co-collaborators in the truest sense of the word.

 

M: I’ve not seen it done that way before. Tell me again how you did that.

 

And Archer explained.

 

M: I’m going to be such a better graphic designer as I adopt some of the approaches you have taken. Yours are all mathematical, it’s amazing what you see and it’s cool.

 

Archer clearly took it for granted what he had done, because it came easily for him, it was very natural.

 

His teacher is a gifted teacher to have gotten Archer started and a humble teacher to even be slightly amazed.

 

So, it’s all good.

 

Here is the design Archer just sent our family yesterday via a text.

 

Time Flies By.

 

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Yes, Archer did this and then himself texted it using Siri and the technology Billy has set up for him and more technology assists Archer has located for himself on the internet. He’s progressing fast. It’s interesting to me too because I just had this feeling that he would do something with Time. Not do something in time, as we know he will do that, but with Time. He was interested in Time before the accident, as in his large poster he painted before the accident of Flavor Flav holding a big clock, which Archer has on the wall in front of his bed at home, and that poster was re-purposed recently for a new poster flier for the McDonogh senior-faculty follies last month.

 

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So, I had a thought that Archer might play around again with Time.

 

In the recent digital triptych Archer sent us, notice the time Archer put on his clock.

 

Yes, time does fly by. The blessing is that Archer seems to be in partnership with time.

 

Oh, if you want to see some of Archer’s posters which McDonogh generously reproduced for sale for the HeART show for the Archer Senft Special Needs Trust, here they are.

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For me, I have not been as grounded as Archer with time as I feel I am racing the clock every day this last month. I responded to a friend last night in a text that the good news is that Archer is doing really well. The crew behind the scenes is ragged but Archer is doing really well. Really well. While I feel like an old time telephone operator with the calls coming in from every direction as the boards light up and having to make the connections and do it seamlessly and smoothly while the next call is coming in, that it’s humorus to watch myself, it’s all worth it because these last few weeks and the next few weeks will have a number of things settled at least for awhile and hopefully in ways that reduce Billy’s blood pressure and the stress that we are very aware of is behind the scenes running along side joy and gratitude.

 

Faith tells us we live in abundance and we do. We are also called forth to act, to prepare, to do what we can to give Archer and the rest of our family what we can.

 

A few times, on certain days towards the end of the art period, the kids in another art room will pass through to their class, and it’s so lovely because as Archer is creating and his digital teacher is critiquing and providing feedback, the kids pause and sort of like, listen in. I took a picture of one of these interactions as I think the picture says it better than I can, as I was so struck by the interdependence. And I was flooded with joy. And that’s how it is, and Archer can’t wait to get there everyday. It is very fertile for creativity and meaningful intercourse about matters of the heart.

 

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The director of the art department, now my friend, and I walked the McDonogh track together one morning when we had that tease of gorgeous warm weather in mid March. As we walked, I learned how she has viewed Archer from the beginning of his high school sojourn at McDonogh. The young artist she saw was one who saw art all around him and knew how to compose in color and design. She said any kid who would paint Flavor Flav as a freshman was a knockout, Of course, she was being kind, but she had noticed the variety of mediums he could work from moving from one to the next with ease was a fluidity and said she could see his potential and that she wanted to be part of shaping. How fortunate for Archer to have that kind of care and notice. It is when we take a personal interest in something and especially in someone that amazing things happen, isn’t it? He certainly could not do this alone. Sure, there may be a God-given talent Archer has, but it may have remained dormant without the ability to be expressed and positively received. What is one of your talents? I bet it has been reinforced and perhaps may only have emerged when someone else noticed or appreciated it. Imagine what we are doing for young people when we can appreciate something they have done or produced or said and we let them know.

 

So, because she and her department have taken a personal interest in Archer, he is soaring as a result. And the digital may just lead back to drawing, who knows. Or it may not because it was just not meant to be. I thanked her for what she said a couple weeks to Archer when she stopped back in to meet with both Archer and his digital teacher. It went something like this.

 

Director: Archer, so you are experimenting with shapes I see. I am wondering if you might be interested in another method for working with shapes.

 

Archer: Sure.

 

She said, could you bring up a picture of say, a bird.

 

Archer googled penguin and up popped a picture.

 

She said, Very nice. Can you trace around that image to get the shape of the penguin?

 

Archer began with the digital adobe program to do this using his stylus, definitely awkward and unsteady with his stylus, but he as always was persistent.

 

She said, Very nice. Can you now cut that shape out.

 

He did with a shade and click.

 

She said, Now you might work with the shape of anything as well as it’s inverse.

 

And in the tracing around the image, you strengthen your ability to draw freehand if you choose to do that.

 

Isn’t she brilliant. I told her so and that I wanted to wrap my arms around her in that moment. Nothing ever forced. Always open and providing concepts and method. Opening doors for his imagination.

 

We talked about the Spring Break trip to Italy she had wanted to take with the McDonogh students last month, those who were studying Italian architecture and art and culture. I felt a stab. Archer would have been on that trip. That was a first time class Archer had been enrolled in last fall that he had been so very much looking forward to over the summer. To see Italy now as a young man when he and I have traveled to Italy related to my mediation work and spent a good amount of time in Rome and in the small towns in Tuscany would have been especially enriching.

 

I got this flash of how incredibly unknowledgeable and naïve I was about this entire injury. Billy and I really thought and were told in an interview with Shepherd in August that Archer would be back in school by late November or December and I had been focused on making sure he would get caught up for what he might miss in that new Italian art and architecture class so he might be able to go to Europe with his school. Going to Europe! Am I out to lunch or what? I really thought things like that might happen. It pained me in that moment as I flashed to the time we were there; I don’t think much of anything we did would be wheelchair accessible, let alone power chair accessible which is a big 660-pound machine difference. Oh but the memories are good and I think about when he was 12 and we went for over two weeks that time.

 

Before we embarked, I bought Archer a new sketch book, and everywhere we went, he drew what he saw, what captured his attention, from the Trevi fountain in Rome, to the silhouetted cypress trees on the Tuscan hills, to crests on buildings and coats of arms on iron gates, to wine labels, to stained glass and statuary of various historical and Christian leaders and saints, to restaurant signs, to ornate door knockers, to the people sitting in cafes: he was a drawing maniac. A quiet drawing totally focused and happy young drawing maniac. As I recall those times now that I write, I am pretty sure he also drew the bronze statue of a lion he saw in one of the outdoor piazzas or someplace in Rome, with one page dedicated to the entire lion, and another page devoted only to the lion’s face. I can see that lion now. Funny, how Archer has been attracted to lions. I never thought about it until now, our lionhearted son. All his creations were very detailed drawings, some graphite pencil, others full of vibrant color and others softer colors, some unfinished but it was unlike Archer not to finish something. He was using only pencils and colored pencils at the time and liked how they fit neatly in his backpack.

 

Alas, on a train back from Florence, he left his notebook full of drawings. I was sick about it. It was a sketchbook full of beauty, many drawings I had not even poured over yet, and it chronicled our entire trip to that point, through his eyes, the eyes of a child on the brink of entering his teenage years but still so pure and full of wonder. I remember my eyes tearing up when we realized what had happened. Why had I not seen it or reminded him to grab it. I felt terrible. We were returning from a presentation and talk to the government officials which I took part in and Archer observed and had been chattering all the way about the possibilities and intrigue, I did not think to scan the train as we clamored off probably caught up in discussing what delectable’s we would cook for dinner. I was so very sad about it. He, on the other hand, simply said it was almost full with only a few blank pages left; and he asked if we could buy another one. Practical, yes, some sadness, but only momentary, wistful at most, but no remorse or regret, Archer moved on. So, I suppose he has always been very resilient about loss.

 

What I am remembering now is how he literally began again.

 

An art supply store is not exactly in most villages in the Tuscan landscape. Thus, a new sketchbook was not to be for a few days. So what did he do? As we drove all around the countryside, beginning in the morning after a delicious breakfast of cheese and good bread and coffee, he and I along with different colleagues of mine from one day to the next who courageously accompanied us as we were on a mission to see and experience and enjoy every single minute we had in our rented stick shift car that hugged the tight turns and zoomed past the other cars approaching from the opposite direction on the narrow back roads of Tuscany, we would look forward to our midday meal and where we might be when we had it. Archer had begun his chocolate gelato tour, deciding where the best chocolate gelato was in Italy. That meant we stopped into many cafes, in tiny villages along very narrow streets, some quite steep in their geography, and most had…. Paper placemats. It’s a very European thing to have paper place mats and Archer made use of every one for… you know what. They became his new sketchbook.

 

He drew what he had seen that morning or afternoon and he drew while I chatted with our companion if we had one that day or with others sitting nearby as it was just like that. Sometimes it was very quiet just the two of us as I sipped a cappuccino and he drew. It was a very lovely time. And he drew so spontaneously, images he carried in his head from the day, others he drew while looking at the object or scene. When he finished, someone passing by or sitting next to us, as you know how close you sit in Europe cafes, would often comment or make a gesture of recognition about his work. If he were finished, he would give away what he had just drawn. I think about that, Archer has always been very generous, and I think of all the generosity that he has received since the injury. Goodness, God is good. You are good. I also think about the experiences Archer’s hands and legs have had, and what his heart and his hands and legs remember. They remember the streets of Tuscany. They remember playing lacrosse and every sport imaginable as a child. They remember swimming and boogie boarding in the cool Atlantic Ocean. His muscles have memory. They have memories too from that trip to Italy of climbing the many steps of the medieval towers of San Gimignano, or the spiral steep staircase of the leaning tower of Pisa and walking the mighty fortress wall around the city of Lucca, to rising quickly from our café table and running through the Piazza Grande in Montepulciano past the path of stalls back to the out of the way shop we had stumbled into in the small town both struck with the decision, we need to go back and purchase that large Della Robbia before their afternoon riposo. On that particular occasion, our legs allowed us to dash spontaneously through the dusty street to the quiet shop of family artisan sculptors and ceramicists, a grandfather, son and grandson, who had captured our hearts with their beautiful terra cotta. And as we returned from each of these glorious day trips, we would rest in early evenings on the verandah or wander and meander lazily through the rows of olive fields near our villa in the warm late afternoons. Oh, word of caution if you love olives: do not ever pick off a tree or attempt to eat a green olive off a tree. Besides being rock hard, it is also poisonous until it goes through the intensive olive making process. All those good memories, not doable in a power chair. But he has the memories. I am so happy about that.

 

I could really get carried away thinking of that trip, and actually thinking of the trips with each of our children at age 12 as it is our family tradition that in that year before becoming a teenager, each may choose one of my work trips and we will have a Mama-Paula, or Mama-Petey or Mama-Dewey or Mama-Dutch trip. Archer’s was Italy. I think that trip was such a gift, they all are. But to think that he may never be able to have those particular experiences again is sobering and I am so grateful he had some of them. I suppose he can have them again in simulated ways via technology, and we just may have to explore that. It is just good medicine to stay positive about these things because truth is, until other advancements or the Creative Miracle, he won’t be able to walk up the famous tower or the unforgettable winding staircase, or stroll in the olive fields. Bu then again, maybe he can. Besides the fact that our imagination is very freeing, I imagine that the power chair we chose, designed for sports fields, could do just fine in an orchard or farm. Well, maybe not, but regardless, I like that kind of thinking of may be.

 

Yes other aspects of reality hit me square between the eye like forgetting we have no way for him to go in the back yard when the McDonogh varsity lax team came for dinner Sunday. All 34 or so boys spilled out onto our deck and back yard, but not Archer. It was a bummer but then again not really as they graciously came in and spent time with him, and his coach gave a lovely speech inside as well. We’ll work on the French door replacement (quoted at $11k so we said we would wait) and try a ramp in the interim hoping Archer’s new chair just might make it through the narrow doorway without a full replacement. The ramp was measured and ordered today so keep your fingers crossed. With all the good intentions and effort to think of what Archer will need, I forgot the back doors, and now that it is spring… well, you know how that goes.

 

And you know something else we almost forgot, we were thinking of taking Archer back to Cape May or if we went to a lacrosse game out of town to spend the night to make it easier on Arch but re realized, we actually can’t spend the night anywhere outside of home because of the need for his specialized air mattress. That is very sobering. We can’t. He needs a very specialized air mattress for his non-innervated body.

 

Oh my gosh speaking of his air mattress that has a motor that runs all night long ..guess what happened the weekend before last? We lost power! Yes, for over an hour, and guess what did … not work? Well, for those of you not living in Baltimore, there was great wind that whipped through. Fierce wind. It tore one of our shutters loose and at about 10:30pm, all the lights in our house went out. I mean it was pitch dark. We had luckily hoyer lifted Archer into bed for his reflexology session about an hour beforehand, and he was very relaxed. As the lights zapped off, Billy and I waited the requisite 10 sacs listening for the click. We had just been trained a couple weeks ago on how to operate the generator. So we were ready. We waited in the dark to hear the click. Click. Sure enough, like clockwork. It was awesome. We heard the generator fire up in the back yard, another big whoosh. But… no lights in Archer’s room. Hmm. That’s odd. We waited. And we waited. In the pitch black, I said, Archer, you doing OK?

 

Archer said very matter of factly, Well, not exactly since there is no air in my mattress.

 

Oh my Lord.

 

The air mattress needs a constant motor blowing in the air and circulating it in a state of the art way that prevents the dreaded bedsore. Archer lives as a result of electrically powered things. While we relaxed a little knowing he was no longer ventilator dependent re the generator need, his other needs are critical too. Good news is he wasn’t in need of suctioning his lungs at that moment in time, or of his PVT vest to shake the mucus up before it has too much time to settle in his lungs, or of his inexsufflation machine which assists him with coughing when his own diaphragm, getting stronger, can’t yet do all the work. Blessed were we. Billy got a flashlight and I went to get another. As I walked into the kitchen we had closed down earlier in the night, I saw the lights of a couple appliances glowing. Hmm. That’s odd. I opened the refrigerator, and sure enough, it was on. How is that? I flipped on the overhead light switch and sure enough, we had power in there. So, that’s crazy but alright! I raced back to Archer’s room telling Billy and him and now Dutch who had come downstairs that we had power in the kitchen. I raced then to the basement to get electrical extension cords. Billy shouted to get the industrial ones while he would get a power surge strip from my office. As I plugged the extension cord into Archer’s air mattress and ran the rest of the orange cord though the pitch black across the living room, and foyer and into the kitchen, I was working quickly to find the outlet in the kitchen. Done. But, no juice. Nothing. What? I tried another. Nope. What’s up with that? the glowing digits of time on the built in appliances still blinked on and off from the brief power loss, and the overhead built in lights were on. So, I tried another set of outlets and voila! Eureka! So, we ran about 6 of Archer’s electrical lines from this room to the kitchen and all was well for what he needed. What a relief. We are so grateful we had that generator.

 

As it turns out, our contractor thought the generator folks were doing the hookup and the generator folks thought the contractor was. It will all be remedied next week. How incredibly ironic. Sure, enough, we went down to check the new junction box and none of the fuses were labeled with Archer’s room and that side of the house. Funny. Ah, if it’s not one thing, it’s anotha, said WC Fields.

 

Archer was back in business and safe and sound and I felt a big relief and a welling up of gratitude for we really do need that generator. As for the air mattress, it’s vital. We check Archer nightly and a thorough once over every Saturday morning when we shower him. The mattress is helping terrifically in combination with frequent turning throughout the night, but it has not saved his feet. We are not sure the reason, and each expert has had a different opinion about it but Archer has been battling the dreaded blisters (bedsore even though not from his bed) on his feet.

 

A bed sore is essentially an open wound that he gets very easily from lack of blood circulation when his body hits something or has pressure applied to it in any way that you or I would not like or that would just be uncomfortable. They all start as pink marks. If they blanche when pushed gently with your index finger, then they are likely not to cause a problem. But we still keep a close eye on them. But if they do not easily blanche, we can anticipate they will go through the stage of creating a very large area around the pink mark that is boggy to the touch, then it blisters, then it pops, then it’s an open wound, then we watch and treat it daily, seeking the services of a wound care expert. So, we have seen the wound care healer a few times a week now for over a month. It takes a very long time for them to heal. The part that has us all puzzled is why is Archer getting these? They started on the outside of his little toes as if his shoes were too tight, so we abandoned wearing shoes, and went to his Manchester City slippers.

 

Indeed, the last four weeks we have been battling bedsores, on his feet.

 

But I like thinking about our time in Italy. We peaked in the cool dark Gothic duomos in Siena with the little bits of sunlight trying to stream through the heavy stained glass, and hiked to the best vantage point in Terantola to see both Perugia and Umbria regions. There was an amazing map Archer liked and drew. We went to Assisi to celebrate with the town the feast day of the great saint, St. Francis, and we imagined the horse races in the Campo of Siena as he ate gelato and drew and I sipped cappuccino. So many of these days were depicted through the eyes of Archer in his sketchbook. But when that was no longer available, everyplace we stopped to rest and eat and drink, he drew with great focus on those paper placemats or sometimes small paper napkins that came with his gelato. He did that throughout the rest of our trip as we never did get another sketchbook. I always hoped someone may have found that notebook of his and enjoyed it.

 

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Do you have memories that are particularly pleasing as you think about them. A place you went that was special, a way you experienced it that is memorable or has found its way into the pleasant reminisces of your past? Gosh, we have so many. I often haven’t slowed down to recall them so vividly, but I do now, and it is really worth it because I am thinking about muscle memory. There is a doctor at Frazier Hospital in Louisville Kentucky I want to connect with for Archer. She has been doing work on mice, then cats, and now on a couple humans. Archer and we have talked about it. She is looking at quadriplegics ability to walk with a surgery that bypasses the spinal cord and relies on muscle memory of the leg. I’ll tell you how I learned of her someday, remind me as it’s a good story.

 

We are very open to experimenting with new technology and science. Of course, we would research it cautiously, but it seems to me that part of the Creative Miracle is the science and technology. Most discoveries are a result of man’s and woman’s curiosities, and unmet needs and serendipity. Science advancements come about as a result of man’s and woman’s intellect. Our curiosity, our problem solving, and our intellect is God-given. As good stewards of our gifts, we want to use them to benefit ourselves and others, to create more well-being in the world. If Archer can be a beneficiary of other’s intellect and we can figure out a way to make those opportunities possible, how exciting is that. It’s very exciting and it’s very hopeful.

 

So, about a week after my last update, a very exciting thing happened for Archer in his daily PT or OT at KKI. A young researcher has been using an electric stim machine that relies on electrodes placed on the T11-12 area of the lower back and on the abdomen. Stim placed on Archer’s legs are what allows him to use the stim bike, in other words, he cannot move his legs or make them work, but the electrical stimulation can. That is for instance what you saw in a prior video I sent you when Archer was moving a bat with his arms. He still doesn’t have arm feeling, but the stem can make the arms work. It doesn’t last that long or it lasts until the muscles fatigue from the artificial electrical impulse. This new experiment however takes that same concept but is seeing if it can work in conjunction with focusing the brain on moving the legs. So any electrical stimulation reminds the body what it already knew as well, before the injury. It’s involuntary. Relies on muscle memory I think. The part that is awe-inspiring is that in the newest experiments, they are placing the electrical stimulation electrodes on the paralyzed paraplegic or, in our case, quadriplegic not on the actual area, like the legs, but instead on the lower part of the spine and abdomen and and asking the injured person to focus, using the brain and concentration, and I might add imagination, on moving one leg in a certain way aided by the stimulation from the electrodes. So, purposeful movement, not just involuntary.

 

What do you think happened? Yes! You are right. Archer focused very intently on moving his left leg and was able to move his left leg and knee ever so slightly. The researcher was thrilled. It was so exciting.

 

Archer, who likes to do things well, asked where he was in comparison to other subjects as she has been experimenting for about 10 months with this. In her excited voice as she quickly fumbled for her own phone to video Archer’s movement, she said top 10%. I could tell that Archer was very pleased. He was concentrating very hard. Isn’t that exciting and incredibly hopeful! The ability to be mindful will surely help Archer in the long run. Breathwork is about being mindful. I think we will work on that as he may also benefit from longer periods of meditation. You know the benefits. He can too.

 

Did you know that merely closing your eyes increases your alpha wavelengths in the brain immediately? Alpha waves are what increase our creativity, or well-being. So, imagine, closing your eyes and taking a good belly breath and then focusing on whatever it is that is hard. Do that right now, just close your eyes while you are awake and conscious. That’s what Archer is doing and that is what I am doing too. The breath, and closing your eyes. Try it. We know how important our breath is, Ready…. Breathe in a good belly breath filling your body and then yielding to the natural release of your exhale. Do that a couple or so times and then close your eyes on one or two of those breaths. When our alpha waves increase, we are much more present and centered, and our brains are more suited to calm and problem solving. And there is a direct correlation with productivity. I am convinced Archer is being aided by breath practice and closing his eyes. And wait til you see what he has produced after this crazy week on his Snail project. We all can be.

 

Here’s a pic of Archer on a Tilt Table working on stamina for being upright in his new chair coming next week. We are up to 45 min!!

 

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I have so much more to tell you, but communication is important even if not complete. I’ll send another update I promise in the next couple days to tell you more of what transpired the last month as it is a lot.

 

We love you. We need you. We always need your prayers. Please pray for mercy for Archer, for your family, for yourself whatever it is that is troubling you or others you love. We all need a relationship with God and these worldly things can separate us or draw us closer. Please pray for our neighbors. Please pray that Archer stays positive through this AD mystery and that he can return to his studies and PT and OT tomorrow as we have lost a week.

 

And please pray for families. All families. Tough times can be hard on families.

 

We have to love ourselves and each other through tough times. Yes, we do.

 

Amen.

 

Sending love

 

 


 

 

Saturday, April 16, 2016 Part 2

 

Archer Senft
Family & Friends update
Saturday 4-16-16, DAY LONG

 

Thank you. Thank you all for creating the energy field that nurtures the Creative Miracle. Your good intentions and prayers have been felt.

 

We have some answers, enough to have a game plan, at least for now.

 

The MRI of Archer’s brain activity shows that he has what it called PRES
(Posterier Reversible Encephalopathy Syndrome). He has a number of places of swelling in the brain from the high blood pressure that is likely the reason for the severe headaches that were not affected by light and, what then caused the seizure. However, that high blood pressure and its wild fluctuations from 182/115 to 79/40 in minutes and back and forth for hours despite the nitro gel we used at home and even the Adovan given to him after the seizure is still a mystery. The Adovan did minimize the swings though thank God. All of this stemmed from a urinary track infection the ER found within a couple hours of our admission through various tests.

 

We don’t know why his autonomic dysreflexia could not be controlled. We are just incredibly grateful that it has stabilized.

 

I felt mother Mary’s arms again and the intercession of Fr Bruno the entire day. Instead of waiting until Monday they wrote the scrip for the MRI as emergency. That was a blessing. As Archer was being wheeled away to be put into the MRI tube, he was still after 12 hours still in great headache pain, waves of agony that were totally untreated as they would allow nothing to eat or drink, nor any other meds, including being without his propantheline for two doses. They had given him one antibiotic and 20 minutes later, he seized. That too is still under scrutiny as he may have an allergy none of us was aware of, the type of antibiotic which he’s not had. But we’re all working diligently together as I suspect he has had it somewhere before before we declare him allergic to it.

 

But as they were about to take Archer into the MRI, and we had confirmed and spent a few hours clearing his pacemaker with new settings, running more heart tests and assuring his titanium in his ear would not interfere with the MRI, he looked pleadingly at us. I hated that he was still in so much pain and distress as he was about to enter that tube. I whispered to him how brave he was and knew both Billy and I had to release him. Billy had been massaging his spasming neck and back muscles and I had been applying counter pressure to his temples to curb the headache pain.

 

I then said, Archer, everyone is praying for you.
He said in a confused way, What?
I said again, Yes, everyone is praying for you.
He said confused some more, How does anyone know?
I answered, Because I posted a request.

 

He hadn’t the energy to chastise me if he disagreed.
He is afterall 17.

 

I continued very matter-of-factly because I believe it to be very true, and I said, Archer, all those prayers…we both know that the results of this MRI are going to be fine. Isn’t that true?
He looked at me in the most tender way and seemed to be very still for the first time today. He said very steadily, Yes, that is true. And he smiled.

 

This is just a bump in the road of the Creative Miracle.

 

I promise to write more later. Archer will be in the PICU a few days at least under very close observation. The Neuro team will be back tomorrow and we will know more.

 

Billy and I and Archer and our whole family thank you.

 

Something will emerge from this setback that is very good. We just don’t know what yet. We all are
Sending love

 

Amen.

 

Saturday, April 16, 2016

 

Archer Senft
Family & Friends update
Saturday 4-16-16 DAY 226

 

Please pray for us now.

 

We’ve been in the Johns Hopkins Hospital Children’s ER all night and now admitted in the pediatric ICU for the weekend. Archer had excruciating head pain and wildly fluctuating very high to extremely low blood pressure, then some irregular heart activity and then, he had a seizure.

 

It was awful.

 

We have no experience with seizures. We will learn. And pray.

 

He is alive. In pain again sadly, a great deal. His BP is still not stabilized but better. He is very strong.

 

Where we go is unclear as we are again caught between Systems with a child who needs specialized adult services, now in the Neuro ICU. The JHH Neuro team has come to consult and been excellent. We will work on the necessary negotiation to get Archer, a child, admitted to the adult Neuro ICU if that is our next step. We are waiting on mor data. Here we are back in the PICU. Our old stomping ground. We wanted to come though and requested to come. They are doing a good job. We are praying there is no brain damage. We are on our way for a MRI.

 

Please breathe deeply for our lionhearted son as you have so generously done for him all these many months. Send your beautiful special intentions his way, Imagine and feel in your heart the expansive love of Mary and God’s mercy and pray, pray for Archer’s stabilization. And pray for the medical teams. And pray for Billy and me as we hold each other together. We hope this is but just another bump, only a bump, in his road to recovery.

 

I am so remiss in not sending updates of the last month. I am sorry. It has been very intense and I promise to update you soon.

 

Please say your favorite prayer.

 

Amen.

 

Sending love

 

 


 

 

Tuesday, March 15, 2016

 

Archer Senft
Family & Friends Update
Tuesday 3-15-16 DAY 194

 

Beware the Ides of March. Moving day.

 

And, please pray for us tomorrow, March 16, special intentions.

 

I went out to see friends Saturday night at an event Billy and I usually attend together annually. I went by myself, though. Billy had gone to the office to start packing the boxes of the stuff I had spent the day labeling for our impending move. He had said he just wasn’t up for seeing friends, and that says it all right now for the insidious stress that is behind the scenes. But I really needed to.

 

So, I put myself together, went outside to go, but, my car didn’t start. Oh, man. I had just made an appointment to bring it in for maintenance as it’s been knocking a bit. I figured it was in need of service but had put it off as an oil change did not make it to the top of the list of the gazillion other things these days, and the thought of driving back and forth to a dealership about 30 minutes away and being without my car was an easy reason to put it off, after all it wasn’t due for a change until June. So, I sat in my car that would not start, kicking myself I hadn’t gone sooner and hadn’t followed my instincts at the first knock over a month ago. There’s just been so much to do these days, constantly. No good excuse though. Fact was, I had no car. So, I got out to form plan B. It was already dark and I stood in the cool-but-not-cold-enough-to-wear-a-coat air, you know those early March Baltimore nights when spring is trying to arrive after a hard winter. I was trying to think what to do. I realized I was stranded. In front of my own house. It was crazy because for so very many years now with all the children as they have grown up and gotten their driver’s licenses, there has always been another driver, another car. But not so now. Dutch has three years to go before 16. And Archer is, well… I just stood there and took that in. It was just a weird feeling, a lonely feeling. Another gap in our natural order of things, nothing earth shattering, but just a little thing that tugged at me in the moment.

 

Considering what to do, I looked back at my own house, and I realized I was looking into my house as if an outsider. Through the dark, I could see Archer and Dutch through the window right into Archer’s new room with the inside lights softly glowing, Archer in his power chair and Dutch alongside lying in Archer’s bed as is a common sight now for the two of them in the evenings, chattering, laughing, and playing music from their iPads. Dutch likes the set up because the air mattress on Archer’s bed is extra long as he too is growing tall and lanky. As I watched them, they were really good. And that’s just it: Archer is really good.

 

But Billy and I were really not, at least on Saturday.

 

The stress of the last five weeks, or shall I say the last seven months, has taken its toll.

 

Billy went to the office; I went to the party. It wasn’t horrible that we again divided to conquer, and it certainly wasn’t the first time in 32 years of marriage that I went out and Billy stayed home, or that Billy went out, I stayed home, juggling five children and life. But I just missed his coming too.

 

I saw good old friends, all of whom were of the variety that we had history together. You know the kind of history I’m talking about, the kind where you’ve been in the same orbit for years because your children went to school together or you served on a school or church committee together or your children were on the same team together, or you have been to the same church traditions together year after year, whatever it is, you have not only been in the same place and time but you have something more, like shared values, together. As these old friends asked me how Archer was, I realized I was beginning to dissolve. Indeed, Archer Senft is thriving. He is doing beautifully. It’s his parents that are not doing so well. I was a puddle. The juxtaposition of one reality of celebration and joy to the other reality of what is needed to keep it going and managed behind the scenes was a harsh contrast. It is just very hard right now.

 

I say and continue to say to myself, This too shall pass. And it helps. A lot. For it will pass. Nothing is permanent. All suffering shall pass. And even as I write now, so much already has. I understand that cognitively, and I know that in my heart. I do. Yet, at least on Saturday, this mantra didn’t fully remove or wipe away the experience of feeling like I was dissolving. So, in various conversations, I found myself excusing myself a few times as I retreated to the pretty ladies’ room bathroom lounge, hoping it would be empty of customers, locking the little latch behind me where I could be alone in a pretty stall, resting on the toilet seat, reaching for the soft toilet paper to daintily blot my eyes, just sitting and allowing the whimpers to happen trying to be as quiet as I could, aware of my quivering hands over my face, welcoming the darkness of closing my eyes and just being there alone. In those moments, I am not sure exactly what it was or is but a combination of sadness, overwhelm, grief, reality, whatever, washed over me and I was aware that I was about to melt away and yet also knew the strength to pull myself together was there if I just asked the universe and God.

 

I worked to keep the big tears at bay, after all, I came out to see friends and have a good time, not to dissolve, and when my whimpers passed, I returned to the outside buzz of the event. I had a few of these throughout the evening. As I sat quietly on my small white throne in stall number two, I was acutely aware of how incredibly feminine my experience was and how fragile I sounded even to my own ears, and how fragile indeed I was. I knew from my work this was not to be bypassed, and that I will have to return as necessary to this place of deep sadness. I focused on my breath and there she was, that sweet friend. Giving my quaking body the air and space it needed to calm itself and once again, restoring me. I dried my eyes and went back out again to the gathering.

 

I am aware that Billy and I are as mentally exhausted as we are physically and that we have different ways that is showing up and different ways of dealing with it.
Archer’s dear friend the lifeguard who rescued him came to visit with his family last week. Lord, it was so good to see them. I was really struck by the reminder of the beach, the water bugs and surfers that they are or were. I thought of Billy and me too. It’s as if we both get up and go out each day together anticipating a good day searching for the right wave to ride but find that we are regularly precariously and dangerously riding the crest of what feels like and sometimes are tidal waves, each of us having to take separate tacks so as not to collide, teetering on a hope that this too shall pass but still with the awareness of the need to focus, muscle up and clamp down with all we have so we are not swallowed up and sucked under these waves of such great force. It feels like there is incredible finesse and concentration and timing required every moment of these rides, and a patience that I have never before known. The sheer fortitude to keep going believing we can rest between tides is either an illusion or just not an option at this time as another powerful wave seems to follow closely behind the one we just thought we rode out successfully. And on it goes. Archer’s injury and all that it requires medically and for services has highlighted that We are up against a powerful system. At least It certainly feels that way again. Actually, we are up against systems, plural.

 

As has been said to me by more people I care to count, all of whom are employed in some capacity with a program for the state or federal government related to services for the disabled, They don’t want to make it easy for… these catastrophic cases. They are expensive.

 

Yes, they are.

 

So, there it is. At every turn there is another call to make to find the person to send us which piece of paper which needs to be filled out, and filled out the exact right way, for if not, you don’t get a call back, you get another piece of paper in the mail amidst the other many pieces of slim envelopes containing an acceptance or denial letter related to the many aspects of Archer’s care, that tells you what you were missing, or in our case on repeated times, what we provided via mail, fax, and in person, but they ask again because for some reason or another, it is not showing up in their records. In essence, they have lost it, or it did not get placed in the correct hand of the correct data entry person. It’s true. Not kidding. Multiple times. It is fortunate we live in Baltimore, headquarters of the Social Security Administration. Billy has sat for half days and more in the SSI office. It has been incredible. And now it’s being repeated all over again with Medicaid because of what was logged into the big system by SSI. I honestly do not know what other families do who do not have a permanent address and a lot of stamina and patience and grit to go at it again and again.

 

One of my new friends who has a teenager who is brain damaged told me he once was so frustrated by the lack of responsiveness of a representative of the institutional bureaucracy that he threw a meatball sandwich across a room. And that was with a medical facility. In the case of the state and federal government, there’s rarely a person at all, unfortunately, as I think it might feel kinda good to throw a meatball sandwich against a wall. When and if there is a person, it’s a bit like the wizard behind the curtain in the Wizard of OZ: they handle such a tiny fragment of the situation in the system that you can easily get sucked in to joining them on a never ending hamster wheel never making progress forward. And all the while, time is ticking and our private insurance for covered services is expiring. That is what the last month has consisted of a lot.

 

Since Archer is a child, he is not yet eligible for Social Security or Medicaid. Ah, another gap. But the state has recognized this and created a bridge program called the Model Waiver. Issue is, there are only 100 kids in the state to get such services. So he has a spot on a waiting list, which moves slowly, as in from November to now, we have moved up only 5 places. But that is 5 places closer to rotating off and into services. The Model Waiver is one of those benefits that can provide things like our desperately needed nursing services that could help our lives tremendously and the critical therapy Archer’s paralyzed body needs. Please keep your fingers crossed and your hands in prayer mode.
Until then, there is a very real chance that we will be without a lot of services by the end of March.

 

Please pray for the health of other children in the state of Maryland that space can thus be made available for Archer as well as for other waiting children on the list now in need. Imagine any very sick or very disabled child in the state and send them healing love. Do it right now. Picture just one. See them in your mind, feel their struggle in your heart. Now imagine them well. Well, laughing and enjoying being a child. It’s a good prayer to pray for other children’s health and their families’ well-being. Good for them and good for Archer. And good for you and me too.

 

Mindshifts to the positive are really amazing things to be able to do. I’ve always been able to do them, and I do them a lot these days especially as our household feels the pressure of the impending about to lose nursing services for Archer’s care. I do them a lot but it seems on some days not enough.
While I believe we can handle the dispensing of the meds and food supplements and various homeopathic tinctures I give Archer, the flushing of his supra pub tube twice a day, giving him a respiratory vest treatment every few days and hooking up and using the inexsufflator every couple days with a suction here and there, although more and more rare, daily inner cannula changes, weekly trach changes, feeding Archer at a pace comfortable to him, emptying the Foley catheter urine bag 2-3 X day, doing the nightly bowel program, giving Archer his shower, checking his skin top to bottom daily and tending to his skin and old wounds, there are some things I don’t think we can do without help. Sure, all of this takes time, a pretty good amount, and some needs are required throughout the day at certain specific intervals, but Billy and I have managed it since we had to choose day or night nursing help and we chose night. But Billy is shifting over to focus mainly on our non profit ORANS now as he should be since it was new last summer and since in hiatus for seven months, more on that later, but you can check out www.joinORANS.org.

 

So, what’s challenging is not so much the medical and physical needs activities themselves but the time they take during the day and the necessary times of day if I am to still run our mediation business. So, I am not going to still run the business. It’s just not possible. And it’s OK. We are on the one day at a time plan. This too shall pass. I will still mediate and train and speak I hope, just on a more limited or selected basis. It will all be OK I tell myself. There’s really no other way as I am finding too that the best laid plan always gets curve balls and I need to be responsive to them too and I need to be close to the origins of curve balls like Archers school and education plan and his therapy course and what’s happening with his body and those folks operate during the day so I need to operate on the archer strong team during the day too. And when those curve balls come, I’ll be closer to field them. You know what I mean. It’s just like life, all the curve balls that we all have to field and catch. I know you have your share too, right? Of course you do. And it makes a difference when you’re there. Thank you for all you do in your life for others, and thank you for being there for us, praying as you do for Archer and keeping us in your thoughts.

 

Here are two of our latest curveballs. One is that Archer has bone loss, and so we are in real need to get Archer more time on a tilt table stand and in his standing power chair, that we are still waiting to be delivered. But the new curve that compounds the first are those pesky blisters. I think I told you about them how Archer got a couple blisters from tennis shoes that we are convinced he just outgrew, again. His body could not tell us it was in pain or that his shoes were too tight because he has no sensation. I am shocked he did not have AD. Anyway, I am so happy I caught it the first day, but that small amount of friction has created abrasions and because of being paralyzed, those have become slowly worse like healing in super slow motion getting worse before getting better and so they have to be watched and cared for a couple times a day to ensure they do not turn into the dreaded bed sore. So, we now have a wound care expert whom we see, oh add her to our list of medical providers too. She’s great, but the bummer is that in addition to Archer being advised not to wear shoes for another week, she has also restricted him from any stim bike activity, standing and tilt table or anything that would add pressure on his feet, the very thing we need to help reduce his bone loss. Ahhhggg. And that is for another two weeks. So it will be about 5 weeks all in of dressings and care for a couple little blisters. Reminder learning: keep checking his skin daily because when you are paralyzed, the body has a really hard time circulating blood and healing like it otherwise would. All that said, Archer’s body is amazing with how it does heal, usually faster than most, and his OT and PT and wound care expert say that frequently. So we count our blessings. These new little curve balls just take a little more time and care.

 

But what is the main challenge in Archer’s care for me is getting the harness on and hoyer lifting him in and out and getting him dressed and undressed, with all his attachments on well and secure and not too tight and not too loose but just right said Baby Bear, and getting his buttocks and hips seated and positioned well in his chair for good body alignment. It’s difficult because of the length of time it takes for one person and, I’m finding I’m neither big nor strong enough. And I want to be, but try as I might, I’m not. So we laugh as I struggle to move his hips into alignment. And it just takes a really long time. If we don’t get help, yes, I’ll need to wake Archer up at 5:30am to make it on time for his 8am home class, an hour earlier than the 6:30am his current large and strong nurse wakes him. so, what’s an extra couple hours In the am? Well, it’s an extra couple hours on the back end too and it really cuts into the studying and other services in the night we are trying to get for Archer. These activities always took two people, a nurse and a tech at Shepherd and often 6-8 nurses and techs at KKI. It just cannot be done by one small person, well or efficiently. As for what is needed in the nights, namely the nightly weight shifts every few hours when Archer is in bed, it is challenging for a different reason, although it too requires strength. Any adult could weight shift Archer at night if they were strong and knew how to do it. The issue that is challenging for me is being on both night weight shift duty and day duty. I guess I could try snatching sleep throughout the day in 60 and 90 min intervals while he is working during therapy and a couple hours between weight shifts, heck it was worse when living at Shepherd and KKI, but it’s just not much of a long term solution. I know that. I also know we will figure it out, and of course we can always alternate and such. So, it’s a heavy time right now trying to figure out services and coverage.

 

I can only imagine what other families must feel if they are in the same boat knowing their services are about to be cut off or perhaps never getting services. I can see why there are so many ambulance calls and trips to the emergency room because what is needed is just not done, corners get cut out of exhaustion or apathy or just forgetting how important every aspect of care for a paralytic who has respiratory needs is. But this may not always be the situation for Archer either, right? Right! Point is for now, we do not want Archer to be one of those ER statistics.

 

So, initially we had 24-7 nursing benefits under our private insurance. Then, because Archer got off the ventilator, we had none. None.
I negotiated anyway asking for some coverage based on the trach and his being quadriplegic, using the math figures I got from the nursing companies and the insurance company on prior phone calls about the daily cost of inpatient. I tried to convince our BCBS catastrophic care rep that it was cheaper to provide nursing services to Archer than to have us stay at KKI back before we were discharged, and once discharged, cheaper than his landing back in the ER. They gave us six weeks’ worth, ending March 29. We are grateful for that. We really are. I recently called to get it extended by two days since the nursing agency did not send us a nurse for two days in a row, so we now have until March 31. But that’s it. Until then, our insurance company is not willing to extend any more nursing benefits. As usual with every denial, they say, You can appeal. Appeals are so exhausting. We are honestly not sure what we will do after March 31.

 

Dutch said to me, Mom, what are we going to do when the nurses don’t come anymore?
I said, I’m not sure, but no worry, honey; we’ll figure it out.

 

It’s always my standard line these days and I do believe it, even when the plan has not yet emerged. But I certainly did not and do not yet have a plan.

 

He looked at me very thoughtfully and the most earnest look crept onto his sweet 13 year old boyish face as he said very seriously, I can set my alarm in the night to do the weight shifts.

 

I was really moved. I was proud of him. Our youngest son. That’s the right thing to do, a good way to think.

 

I said, Oh, sweetheart. Thank you. I really appreciate that. I’m sure Archer would too. But that won’t be necessary. Don’t worry. Besides, your job is to do well in school. And that means a good nights sleep.

 

I paused and my mind flashed with, Accept his beautiful offer.

 

I added, You know though, we may take you up on your offer on a weekend night…If that would be OK. If so, Dad and I will let you know, OK?
He nodded and smiled.

 

I felt moved again and said to him, Dutch, that was a very noble offer you just made. I am proud of you. You have often been a kind and generous boy and now you are growing into a kind and generous young man.

 

So, comfort from a 13 year old. Go figure. But I do think with a family mindset like that that we will figure it out. There might also be some good friends who might be able to do a night shift here and there for some respite; we will figure it out. And, we will find and hire help that is not a nurse. There are a lot of things we can do, right?

 

But we remain hopeful of another separate insurance hearing tomorrow. It is a very very important hearing for Archer’s health and future.
Please say a prayer for us. A very special intention.

 

Yes, we need your good intentions again. You have been so good to us. Please, this time, pray for the decision makers and all involved that they will be inspired to do the right thing. Not a stretch, not something they wouldn’t have to do otherwise, but to do the right thing within the purview of their power, and to do so without further delay. We have been waiting since August. Since August.

 

The waiting has cost us our building, our savings and the dismantling of a lot of my business. And it is taking its toll on Billy in particular, and on me too, and certainly by extension to our family unit. Please pray for all the fathers who are trying hard to support their families. Please send a good intention for all the parents today, including yourself, who have good hearts and are working hard to do the right thing. Those positive intentions coupled with a special intention for the decision makers looking at Archer’s case will create the same energy field that can foster little miracles and good things. The way God intended us to live.

 

So, let’s all right now together take a breath, and take in that sweet air that is our birthright, God-given joy, and make that positive intention in your mind, fill up your belly with air, and then exhale out what your body did not need or no longer needs. Please make a special intention for Archer and for the decision makers. And make another special intention for yourself. That’s OK. It’s good. Let’s all ask for special assistance to do the right thing and be our best selves, living from our hearts and not making decisions rooted in fear or without mercy. We need that energy field. The Senft family needs that energy field, but so does the world.

 

And as for today, today is Day 1 of moving for Baltimore Mediation.

 

Billy found the new space, the old now restored Union Mill, 1500 Union Avenue. I was over there lat week, had the room painted and a rug in storage cleaned. As you know, we were deciding and then boxing up stuff this weekend, deciding which pieces of furniture and file cabinets to take. I was having to tag which stuff was important enough to bring. Stuff that filled the 100 different trainings we designed over 23 years, 19 different skills training course manuals I wrote, my law books, over 4000 mediation client file jackets closed in storage, my now deceased dear friend and staff mediator’s Governor’s special award and framed diplomas his family didn’t want but which were important to him and thus to me as his friend that I just allowed to remain on the walls in his memory, all the award and recognition plaques, just stuff lots of stuff like that. Very little of it made the cut. Sobering is an understatement. I felt too numb to weep. We’re leaving our building where we have been for over 20 years, with literally less than 25 percent of what we had. There won’t even be a large BMC sign outside as the new layout is co-op style. Good for dialogue and collaborating, awful for being seen and standing out which mediation usage has always needed for people to take note of one if the best options they have when in conflict but it just doesn’t rise top of mind. Litigation does. All the years of believing in the alternative, hopefully doing excellent work for so many and they in turn for us for all the skill set and mindset that came to be a part of our fabric, how we have lived. Just painful. As I write, no wonder I was so watery at the party Saturday night after spending Friday and Saturday doing this awful deed.

 

My over dramatic self absorbed side feels like I’ve been raped, stripped of all my clothes and jewelry, am beaten but still alive and will crawl away, find healing, make peace with it all and thereafter move on.
My sensible side says, enough of that nonsense.
I feel both.

 

Once we finish, I am sure there will be a new lightness, there has to be. Surely, another new beginning. It’s just tough now.

 

Let me go back before I forget to share with you the slides that Archer and his OT from Shepherd put together. I am attaching it for you. A.Senft-1 I am also sending you a picture of Arch surrounded by a few good friends and his OT before the assembly at his school, McDonogh.

IMG_1680

 

 

It is really a hopeful thought that maybe one beautiful smart talented high schooler in that assembly or a friend or family member of one might be spared a neck injury in the ocean this summer and many summers from now by thinking twice and not diving into the ocean that beckons us all, sad but true, but also happy and true if true. Inspired by the talk, a foundation that had helped us, started by another injured young man, and to whom we are very grateful, pdid a little article that I will also share with you, Walking with Anthony. Here’s the link: http://www.walkingwithanthony.org/blog/

 

And as I think about McDonogh and the assembly and our drive back, I realize I had not sent you a picture of the new van. So it’s almost two weeks old now and we are using it daily. SCI KKI where Archer does all his outpatient PT and OT work now, has a nice service for patients only that when you pull up to drop off a patient, they will valet your car or, in our case, our van. I called down last week to give them the number of my ticket so they could retrieve the van for us as it was almost 5:30pm, Archer’s PT quitting time. As I gave the guy the number, he asked me, Which car is that?
I said, The dark grey van.
Which one?, he asked again.
I said, You know, the graphite gray colored big van, the tall one.
Oh, he said, You mean, THE BUS.

 

And I could feel him grinning through the phone line.
Yep, that’s the one.

 

So, our van is officially a bus. And Archer refers to it as the Silver Bullet.

 

As I drove out of the KKI parking lot last week and glanced in the rear view mirror that I have positioned such that I can see Archer at all times behind me in his power chair, I asked Archer, Hey, Arch, how did you come up with the name, Silver Bullet?
I could see him as he looked straight at my reflection in the mirror.
He replied looking me dead in the eye, Ma, you think this thing looks like a bullet?

 

I laughed. As usual. A little tongue in cheek. So, we were off in our Silver Bullet.
Here’s a pic for you.

IMG_1669

 

As Dr. Suess said, Oh the places we will go!
Funny thing, Oh the parking garages we will not go! It needs at least 9 feet clearance. The only garage that can accommodate it so far is at Johns Hopkins, and the garage is marked, Oversized Vehicles Only. Well, I barely made it into a parking spot in the Oversized garage, in fact I barely made it into the garage to start with. Here I was concerned about clearing the nine feet needed, but it was the mirrors alone that made the bus too wide, as it would not even fit going through the in turnstyle. So, I had to hop out and fold them in! lol. But I was very proud of myself that I was able to park with a lot of back and forth into a space amidst the other oversized trucks. I thought you’d get a kick out of the pic I texted Billy as I felt quite triumphant.

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I was seriously taking my time to do that job well and not to cause any other vehicle damage. Of course poor Archer was waiting for me in hispower chair outside on the curbside the entire time where I had dropped him off all the while during my maneuverings. He’s a patient guy.

 

But I think Archer likes his oversized vehicle, bus. On the second day we had the bus, Archer, who had heard his lacrosse team had a scrimmage game in Pennsylvania against Haverford, announced to me, Hey, Ma, Road Trip Wednesday! Well, that put the wheels in motion when his varsity lax coach heard Archer might be able to come to the game and called the Haverford Asst. Principal and they arranged a place for Archer to watch the game from the equivalent of the announcers box in the event of rain which was forecasted. No, rain was not going to hold Archer back. We just needed a work around Plan B. My job was just to arrange his getting there. How nice. Archer was in his glory. Here’s a pic of Archer and a very old dear friend from Haverford lax who came to join him.

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As I write about our bus, I am reminded how even the Maryland MTA, just to get Archer a card to ride the special MTA Disability Mobility bus, since we learned in the last 2 weeks at KKI he was too tall for regular conversion vans and taxi services in his new chair, made Archer come to them. Why do they have to make it so hard? That mobility oversized van/bus was the only thing available for us for transport for awhile for our last TLOA 6 hour trip home from KKI in patient as well as when we came home before we got the bus. But Archer couldn’t access it without an interview. It’s true. They required an interview. As it turned out, it was simply a person behind a desk checking a box once we checked him in. I wondered to myself, If it’s fraud they are concerned about, couldn’t a video or a skype call have sufficed? We asked. No, it couldn’t; they are not set up to do that.
We asked if we could email the information, send a photo, but the answer was similar, No, that’s not how it’s done.

 

Ok. Another big system.

 

Archer was still at KKI at that time and it was not just a matter of scheduling an interview. As a prerequisite to the interview, we were required to call another number to make an appointment for them to come get Archer, which required cancelling therapies because we had to be ready 2 hours before the appointment time since they could not guarantee when the bus to pick him up would come but gave a window of 45 minutes, then another window of 60 minutes to get there even though it was only a few blocks away. The first time scheduled they never showed up. We called and they said it was a mistake. So we had to do the whole thing all over again, cancelling therapies and getting Archer very bundled up. It was another glimpse into what it would take to use their service. And indeed, when we did use their service later, we had to plan to ask them at least a day ahead of time to come 90 minutes before we ever had to be someplace, and two hours if we needed to be early. The MTA Disability bus rides were pleasant enough, the vehicles certainly quite clean. That said, I recall the first time they came to our house once we were discharged in early February. It was memorable.

 

Archer was pretty bundled up on that winter day with one of his shawls wrapped around him and another on his lap and legs, one of his stocking caps on his head pulled down to keep him extra warm. We were waiting on our sidewalk for the driver to deploy the lift system for Archer’s power chair. The driver was a large build woman in a large Airforce like winter jacket. She had long, I mean real long, multi strands of braid that flopped as she moved about. When she bent over to get Archer fastened in into his roll-on chair, seatbelted to the floor on all four sides like a car atop a moving tractor trailer, her cargo pants only covered about 70% of her back side and I recall wondering if she got cold when the outside air was on her skin. Probably not. She was tough. I had said hello and she had not responded. So, as we sat there waiting for her to pull away, we just sat there. And we just sat there. There was another old lady on the bus too. We looked at each other and smiled. I asked her if we were waiting for anything. She said, I don’t know. It must be the driver. We were sitting in the back benchlike bus seats for the non wheelchair disabled passengers. More time passed. The bus wasn’t even running. So, I ballyhoo’d to the driver, Ma’m, Are we waiting for anything?
And she replied as she never stopped looking straight ahead, Yeah. You. Waiting for you to put on your seatbelt.

 

Sure enough. I hadn’t put it on. I was glad I asked because I wondered when she was going to tell me.
I thanked her and we rolled right out of there. Not another word from her.
So, that was our entry into the MTA disability bus system.

 

Each time we used the MTA, we had a character for a driver. The nicest lady in the world was the next driver who brought us back home that day. What a juxtaposition. The next time after that was a guy we heard all about his life and his girlfriend’s baby. He was quite pleasant as I also learned that he liked his job because drivers for MTA get paid a lot more than the drivers for the armored trucks carrying money where he had been. He said they think they can pay you less because you get to have a gun and feel like a badass, but that perk is really not worth it. Hmm. I tended to agree with him. No surprise there.

 

So, it’s been an interesting journey. Main thing learned, we are grateful for the MTA back up. We are more grateful for our own bus. We lost a lot of time we could have been in school or PT/OT waiting on the MTA bus, so it was real helpful to see what we could and could not schedule if we had to rely on public transportation. And, most importantly, I thought of those who worked who had to rely on it and could see that they might be late or have to stay late waiting around for a ride on a frequent basis. Not always by any means I am sure, but frequent enough.

 

And I think of how far Archer has come. When he was first put into a power chair last September for the first time, he had to use a sip and puff and 2 of us had to walk alongside or behind, one attached to Archer carrying oxygen, and another trailing close behind pushing and carrying the suction machine being rolled along on a table with a long plug. I look back on that and think about that first day when we went with his PT outside of Shepherd into what they called the Secret Garden. I had felt almost desperate for Archer to get outside air, wondering for weeks in NJ and then Atlanta when we could get Archer outside. And when we went outside for the first time, other than a stretcher into an ambulance or airplane, how splendid it was and how free it felt even with all the ventilator contraptions and life support. It was a wonderful tease to yearn for what could be, air, breath. And Atlanta is so pleasant in the fall that later short rolls down Peachtree Road with Archer, carrying his respiratory needs and wheeling that table, literally a table on wheels, right behind Arch for the emergencies, never seemed a burden on those outings. I was always a little edgy that there might be an emergency but it was never a burden in the first days out. Just pure joy to be out and outside. What a sight we must have been walking and rolling down Peachtree. And I thought it was glorious. Our son was alive and outside in God’s world surrounded by fresh air that he someday might breathe and experience again on his own.

 

And when I think about public transportation in Atlanta, I had begun to look into those options for Archer for Thanksgiving when we thought we would all be in Atlanta together for that holiday. I learned then that the public transportation would have come right to Shepherd to get us. It was really pretty easy.

 

Yesterday, when I was telling Archer about the Maryland system and the waiting list and so forth, he said in classical Archer wisdom, Ma, if it’s going to be so hard for us to get the services we need, let’s just find the state that has the best social services and move there.

 

I was stunned. I really was. Yet, he’s right I suppose.

 

I said, Well, I don’t know where that would be, Arch. It seemed it was easier in Georgia but I really don’t know.
Archer replied very matter-of-factly, I like Atlanta.

 

But that breaks my heart. And yet, I love that he is so pragmatic and accepting. It ripped through me that he will make these decisions for himself someday perhaps choosing a locale to live in based on services and access. Why not? Right?

 

He must have read my surprise or perhaps he just had a moment of reflection, but he added, I don’t know, Ma. I’m pretty much a Baltimore boy.

 

So, please pray for us and for Archer and especially for the hearing tomorrow afternoon, March 16, that the right decision will be made and we can and will stay in Maryland, that we will not have to entertain moving our home, that we will get help with nursing, get coverage for OT/PT that is running out on our private insurance and get the kind of coverage for Archer our lion hearted boy who is working tirelessly daily in his hours of hard PT and OT that will continue his OT and PT daily so he has the best chance of maybe getting his arms back and maybe even a wrist or two.

 

Please say a prayer that good decisions will be made by those who have the power and insight and foresight and wisdom to make such determinations for such coverage, this week in particular, tomorrow. He needs this help and coverage for his body to have the chance. We hope for Archer’s medical future of services and our family’s quality of life, weak as we can feel, and hopeful of Archer’s future. We do not know how the Creative Miracle will continue to reveal itself. Please say a prayer that whatever happens, it will be good for Archer. Thank you all so much from the bottom of my heart. You have been there with us right by Archer’s side, thank you again.

 

Here is the prayer:
Loving Father, you are the God who works wonders. We praise your glory in the life of Fr. Bruno Lanteri, a witness to your mercy and a powerful, effective channel of your grace. He guided people to never yield to discouragement, but to perseveringly hope in the goodness of God. His sense of hope was his call to constantly begin again. Father, hear the prayers of your family and, through the intercession of Fr. Bruno, grant Archer your healing grace though a Creative Miracle that will restore his body to full function just as you created him in his mother’s womb, whole and complete, so that he may begin again. Fr. Bruno, may Archer’s healing advance your mission for creatively promoting God’s Glory on earth.

 

We ask this through your son, our Lord, Jesus Christ, in union with the Holy Spirit, Amen.

 

Sending love

 

PS. I know we are being serious and all, but I have to tell you something that just made me smile. I just went downstairs to see everyone and help as it’s time to get Archer into bed and Billy was starting the lift. A family member had some bad gas. Archer just said, drolely, I may have liked it better before when I had no smell.

 

He is a riot.

 

Please say the prayer again for us!

 

Sending more love

 

 


 

 

 

Monday, March 7, 2016

 

Archer Senft
Family & Friends Update
Monday 2-29-16 DAY 180

 

Monday, February 29. That’s when I began this update but now, it’s actually Sunday 3-6-16 DAY 186

 

I’ll just call this week: Leap Week.

 

I know it is a Leap year. But our leap year was 2015. Or I wish our leap year had been 2015 on August 5. But it was a leap year.

 

Just a quick dip in the ocean and …he lept.

 

Do not leap.

 

That was the message this week when Archer co-presented at the upper school assembly at his beloved school McDonogh with his Occupational Therapist (OT) who flew in all the way from the Shepherd Center in Atlanta, Georgia to do this with him. She and Archer had put together a slide show all about understanding Spinal Cord Injury, what it means to break your neck, in his case shatter, with a C4 burst (C3-C5) and what parts of his body are affected, including respiratory complications because of C3, but that he has C4 shoulder shrugging ability, and the start of C5 bicep movement now, what it means to be that high up on the spine with that injury, and how everything below the injury doesn’t work (for now), how Archer’s injury occurred, where he’s been and what he has done since the injury, how the students can help him transition back and understand his power chair and Autonomic Dysreflexia and some Do’s and Don’ts.

 

It was amazing. It was so good to see the upper school kids, all 600 plus of them, assembled. As they filed in and took their seats, a buzz began to rise of high schoolers murmuring and interacting. It was a sea of McDonogh eagles but instead of wearing their black and orange school colors, there was a wash of bright white interspersed with green as most of them were wearing their long sleeved t-shirts that said Archer’s Army on the front and had one of Archer’s graffiti designs with the tag he liked, Pruf, which was his spoof on Proof, on the back. I realized how orchestrated the day was and the care and preparation put into it not just by Archer and his OT, but by McDonogh and by all those kids. Care. Effort. Showing up. Life changes when we do that for each other.

 

You know, as I say that, I am thinking also about the hour or so before the assembly when Archer parked himself in a side hallway to visit for the first time with many other friends passing by in the theatre building. To give him some privacy and the kids some teenager time, Archer’s OT and I went to the empty auditorium and sat alone in the large hall side by side in the theatre style chairs.

 

I realized and was really struck by the effect of shared experience. Archer’s OT and I had had a number of fractures in our relationship in the two and half months she worked with Archer, especially in the first couple or so weeks. Her relationship with Archer was not always too good either. When he couldn’t perform, she did what many tough coaches do, she turned ad hominem, as we say in the law. She turned her frustration about his performance or lack thereof onto Archer and made it personal, attacking his character. Saying he was not trying hard enough, that he was wimpy, that he didn’t have what it takes essentially. It created many many hang dog days and it added to the incredible pain in all respects of the whole ordeal. She was not that crazy about Archer and labeled him as not trying hard enough and as if there was something wrong with him. There was something wrong. Gravely wrong. It’s called the inability to breathe.

 

But that was not all. She was the other person along with his attending physician who had said Archer had plateaued. That word I could not accept. And she had said it very early on back at the end of September after just 3 weeks of our being there. So, now you have more context as to how extraordinary it was that she and Archer were there together presenting, and that she was here at all.

 

As we sat chatting, we reminisced about the days at Shepherd, I had flashes of seeing Archer, puffing through a straw to operate his power chair, his head lowered most of the day, his shoulders droopy with the weight of excruciating pain, hot towels draped over his head covering his face to give him some relief from the ongoing sweats and the alternating chills for a body desperately trying to regulate when the main nerve has been severed. She had witnessed the daily grimaces and the gasping for air and the writhing of the suctions that she and other therapists in the spine gym had to stop for often, calling and waiting for an RT, interrupting what they had hoped to do. In hindsight and even then, I can’t blame her for thinking Archer was not Shepherd material. After all, it’s hard to get to the Shepherd Center and we had been recruited and helped by the Christopher and Dana Reeves Foundation to get there. To whom I am eternally grateful. Shepherd is where Olympic Athletes and young professional sportsmen and professional surfers go when they have been injured. And they don’t mess around. Most who arrive are not on ventilators, and those who are, it is seen as a mere nuisance by Shepherd and they have methods to get you off in a mere few days, and if that doesn’t work, in their eyes, you are not to be there. It’s tough there. And in many ways based on that criteria, he was not Shepherd material.

 

But, for as awful as it often was for Archer and probably for them too, Billy and I knew it was the place for him to be. Archer’s OT had endured me incessantly asking for meetings to keep Archer there. We disagreed with their assessment and they disagreed with ours. They had said, literally, Mrs. Senft, we do not see the Archer you see.

 

I think as the weeks wore on and I negotiated with them every two weeks and then every week to remain, that a number of her judgments about Archer, and about us, began to melt away the more time passed, Archer progressed in spite of the ventilator and lung complications. I remember a day we spent together in the spine gym. They always had loud tunes playing and we put on some jamming old 1970’s music from Pandora, I think it was Neil Diamond’s Sweet Caroline, and I danced around Archer’s chair telling him we would dance someday. She really thought I was crazy. She said, You’re as crazy as Archer. I laughed because I was having fun. I also told her I was dead serious. He would dance, with perseverance and God’s grace and mercy.

 

She honestly did not know what to make of us. As I look back, I am not sure I would have known what to make of us either had I been in her shoes. We presented as this family with this super talented athletic smart kid we knew would recover and they just couldn’t see it like we did. Admittedly, our faith was our faith. Of course we did not know he would recover. Yet, we did know, we know now, we believe. And part of the Creative Miracle is that it was the Shepherd Center where Archer needed to be. And if he was discharged home or to an LTAC, he was likely never to get off the vent, so that just was not an option for us.

 

Gosh, we must have been difficult for them. And OK, so Archer was not the rock star recruit they thought he’d be as he was not able to participate fully like everyone had hoped and expected. But that didn’t mean he was any less, it was just going to take more time and effort. The days when she was ready to help Archer pump iron, and he showed up totally droopy and in pain under a towel, I can imagine why she wanted to discharge him, reject, next. So, in hindsight, I can’t blame her. But Archer Senft is no reject.

 

As we sat in the empty auditorium at McDonogh waiting for the kids to file in, we were chattering away like old close friends, laughing at the old stories that somehow seemed funny now when they were not funny at all at the time. It was like we knew each other deeply. And I think we do now. There we sat. She looking very different from every previous encounter we had had in two and half months of daily work. What was etched in my memory of her was her slow deliberate lumbering walk, a solid tankish rugby player type build, always wearing sweat pants and a tightly fitted t-shirt, athletic shoes, her long pin straight hair in a pony tail, plain and no nonsense, a woman of few words. We couldn’t have been more opposite. That will probably make you laugh, especially the woman of few words part. But I was so very happy to be sitting with her and having the time together. It was precious time to me.

 

We were aware the time was approaching to cue Archer up to the stage. It seemed our catching up was at a natural pause. There was a silence between us, it was a comfortable silence. It was nice.
I then said to her, You know, I almost didn’t recognize you today. You got all dressed up.

 

She had. She was wearing a skirt, a loosely fitting unstructured top, black boots with high heels, and her long blonde hair was curled in banana curls hanging loosely around her face and shoulders. She looked great.

 

She laughed and said, Yeah.
There was silence again. We paused and just gazed at each other. Then we both looked forward, and we just sat, side-by-side in that empty auditorium surrounded by the hundreds of empty seats that were just beginning to fill. In that moment, I felt warmth I can’t explain. I was so very happy to see her, to be with her, and that she had come. I was filled with gratitude. Deep gratitude. I felt my eyes beginning to puddle.

 

I turned to her again and said, We have history, don’t we.
And she looked at me and said, Oh, yeah, we do.
And I said, And it’s really good of you to have come.
And she said, I’m glad you asked me. It’s what he wanted. This was his OT goal. Arch asked me to make the slides before he left.

 

There was another pause.

 

And she added, But I didn’t think it would happen.

 

There was more silence.

 

And I said, Thank you for helping him achieve his goal.
And she said, It’s Archer, man. He’s really amazing. I can’t believe what all he is doing.
And she added, He’s so Archer. I always wondered what he would be like because he’s got so much going for him. I see it now. I see him.

 

It was a moment. She saw him. And she sees him. Don’t we all want that, to be seen the way we are, the way we want to be seen, the good way we see ourselves then seen through the eyes of others who matter to us. I felt a bond with her. That history we had, that painful, difficult chapter, created a connection that I just can’t explain the depth of. Of course I know what happened academically, it was conflict transformation. And in a brief new encounter, on one hand it was as if Everything that had transpired before no longer mattered. And yet, in that encounter, on the other hand, it was Everything about what transpired before that did matter.

 

The rough days and weeks and how we managed them mattered a lot. They shaped our moment then.

 

I said, It was God’s grace; there were many many people praying for Archer. It was hard. He was aided by their strength and support.
I heard myself telling her, I don’t know what we would have done without all of their prayers and support, community.

 

We knew we only had a few more minutes. We chatted briefly and our being back at Shepherd this summer for their Day Program and how we looked forward to that. She got up to go meet Arch.

 

As she walked out of the auditorium to the stage, there was another realization I had as I a was experiencing deep gratitude for her presence there at McDonogh. I have a deep appreciation for her witness. While we were struggling, she was there with us. She knows. Have you ever thought about the role of witness? The person who knows because they were there too. Every friend from August 5 onward who texted, texted an inspirational message or quote or picture or sent a card or a gift and especially those who travelled to see Archer, heck, every family and friend who keeps up with us reading these long updates, you are all witnesses to chapters in a story we might soon forget, fading as it already is.

 

You were there with us. We were there together. We were not alone.

 

The witness supports you, affirms that while it may be a crazy experience, and even if you acted crazy, you are not crazy. While it may seem unreal and unbelievable if and when retold, the witness remembers too and affirms it was real, it did happen that way. The witness is more than the person who has the shared experience with you. For sure shared experiences bind us to each other, deeply, and thankfully, like summer camp friends, siblings and cousins, middle school girlfriends, team mates a particular year or season, first year college roommates and fraternity and sorority sisters. They share with us the treasures in the archival history trunk of our lives do they not? And it can be so good to be together again. And that is what we are to do, be together, wherever two or more or gathered…

 

But a witness role it seems to me is even more than just the shared experience. Sure, the witness may be some of the same people with whom you have treasured shared experiences, but the witness is there with you in the tough times. Yes, there with you, observing, supporting you in the struggle during the dark times, the times of grave uncertainty. I suppose it might be similar to the bond enlisted military folks who are thrown together in a platoon and who fought a war together might have. An enduring spoken and unspoken bond, the outcome of literally being in the trenches together.

 

When we were chattering away, I had said to her, It’s funny how it just feels good to talk about the times at Shepherd together, even though they were hard. It seems so long ago.
She laughed and said, Man, I saw you guys in the bad. I mean, I see families and these kids when they are at their worst. Really bad. I don’t know how you all do it. But Archer, man, that kid… To see him now…

 

There was seriousness, realness, and amazement in her voice.
I know, I said, it’s nothing short of miraculous.

 

There was no hint in her voice or words of sweeping the time at Shepherd aside or pretending it was better than it was nor trying to avoid it out of courtesy or willing away the bad parts as if they didn’t happen. No, there was full acknowledgment of that chapter and full appreciation for where he was now, and we laughed about both aspects, one out of relief perhaps, the other out of celebration. And we laughed together. Our laughter was soft and the kind that is easy, light and authentic. There was no edginess. No hard feelings. No disappointments. No lingering judgments or grudges. I felt admiration for her, and I felt her admiration for Archer, for us. The reciprocity was palpable. And it provided restoration.

 

The auditorium began to fill to overflowing. Some of the Arch Angels were there too.

 

Both Archer and his OT were on the stage now. I wasn’t really sure what Archer would say when the power point slide, What Happened To Me, flashed up. Would he share what he had begun to tell me in the last few weeks about the accident itself, August 5 afternoon, how he dove, the deafening crack he heard as his head hit the sandbar, keeping his mouth closed as he tried to move his body and get to the top of the ocean for air, realizing immediately he was paralyzed, trying to sort out the confusion that nothing was moving but that he could think clearly, having what seemed like trillions of thoughts race through his head and asking God, Please, God, do not let this be my day to die, counting the seconds of holding his breath, praying his two lifeguard friends would see him, experiencing a quiet, imagining their coming to rescue him, waiting, praying, feeling his lungs giving way, hearing James in the water, holding his breath until he could no longer and the sea water rushing in.

 

Now on the McDonogh stage, I wondered what he would say.

 

He was mic’d with a wireless lavalier microphone clipped close to his trach in his throat, around which was awkwardly fashioned his starched button down blue McDonogh uniform shirt which he proudly wore, around which was tied a bit awkwardly a man’s neck tie.

 

He was fairly brief, even a bit shy I’d say, as he lifted mainly his left arm slightly and spoke.
He began, On August 5, I was going out to take a dip in the ocean, I dove, hit a sandbar and broke my neck.

 

He then shared that he had been in ICU in New Jersey, and that it had been, Pretty Rough. He outlined that he then flew to Shepherd Center and was there a couple months or so working with his OT as he motioned to her with his shoulders shrugging, my OT over there. At that moment, she broke in and they had a cute spontaneous back and forth as she asked him, And how was that? to which he responded as he looked out at the sea of fellow students, She’s pretty tough.
And he added in his deadpan, now quite gravelly voice, I’d say it was a love-hate relationship.
And the assembly laughed.
Classic Archer. Rarely embellishing, spot on and usually dry and funny. The kids seemed to hang on every word he said, and he hung on their every gaze.

 

He continued that he then came back to Baltimore, went to Kenndy Krieger, and he said, And I got off the ventilator. I can breathe on my own now.
He smiled from his power chair and looked out at us.

 

There was whoop, and the kids began to clap. Yes, that was something to clap about. They knew. They understood. Wasn’t that generous of them to offer that applause. Archer took it in I could tell.

 

It’s interesting how someone can tell a story in one sentence. I got off the ventilator. Or, I took a dip in the ocean and broke my neck. One line, a prior lifetime. We all have those chapters of our lives, some more acute than others, but they are the chapters of our lives that are grueling, arduous with months if not years of stress, work, effort, fear, uncertainty, grief, and they get reduced to one line. Like, I lost my husband last year. Or, I divorced 5 years ago. Or, We were a family of 5, now 4. I had polio as a child. I was on the force for 17 years. My family fled from Cuba and came to Baltimore. My grandparents were in the Holocaust. He fought in WWII. We lost a daughter 14 years ago. I am a cancer survivor. I raised 4 teenagers by myself. Something really huge that is very reduced to a sentence. It’s just interesting to me. We need that short hand of course. But there is so much we don’t know about each other.

 

And there is so much we do. As the slide presentation continued, his OT reminded the assembled peers that Archer is the same ol Arch they knew. She said, He’s still crazy goofy and he’s pretty fun. He’ll still make you laugh. She turned and looked at Arch and she began to tease him about therapy and what he didn’t do, but she self-corrected and said, No, that’s not true. He never said no.

 

She continued to educate the kids about Dos and Don’ts. Like, do talk with Archer about what you normally would; do include him and invite him to things; do ask him, he’ll tell you. And as for the Don’ts, she began with Don’t drive his power chair or put your feet or legs on it. It’s a part of him, just like you wouldn’t prop your legs on him before the injury. She asked the kids how much they thought Archer’s power chair weighs. One in the audience said, 40 lbs. I had told her earlier how one of the kids I had asked said about 50 lbs as he likened it to a high-end bike, the more advanced, the lighter the frame and materials. She said to the assembly, Oh, no, this chair weighs 500 pounds.

 

That set off a murmur in the crowd. As it should. That power chair also goes very fast and is set to be super responsive to Archer’s touch on the T-bar.

 

The sheer weight and power of his power chair is the main reason I think for why Archer told me he did not want to go to the cafeteria at school or be in the hallways. He had said to me, No crowds, Ma. It clicked for me during the assembly. He is concerned the T-bar on his chair might get jostled. And indeed it might, as it’s really easy to happen if the chair is on. And unless Archer is stationary and someone has turned the chair off, it’s always on. When knocked, not good things happen. It happened frequently to the nurses at KKI when they were unfamiliar with a power chair like his and forgot to turn it off when they got close to it and bam, some were left with bad leg bruises when the chair whipped around in a circle and pinned them, other times the chair careened into a wooden cabinet gouging it with a new hole. It’s a powerful machine. And, since Archer’s upper and lower body have no feeling, it puts him at risk too if his leg or foot fell off the foot rest during such an episode. So, I don’t blame him for being cautious about that. At least now, at first. But once the McDonogh kids know and understand this, and they are very loving and smart, I think it will be fine. All in time. It does occur to me though that in the future, and until Archer has hand movement, Archer’s Army will have to cover for him and almost act as bodyguards when they are in crowds with Archer, for everyone’s safety.

 

His OT then reminded the kids not to get too close to Archer’s face, up in his face if you will, when they talk to him because he has a steel rod in his neck and that he has little way of adjusting his body to them. She showed them the best position was eye level within a reasonable distance. The cool thing was that the power chair we have for Archer is really special. Archer demonstrated later how he can raise himself in his power chair such that he is basically at the same height as someone standing next to him. As he raised up in that 500 lb chair and became taller than his OT, that drew some murmurs too. But really, it will just allow him a better vantage point at a lacrosse game or at a concert.

 

She explained how his voice sounds different now only because the muscles to his diaphragm and other muscles below his level of injury are still enervated and thus there is no electrical impulse to allow his voice box to operate fully. As a side note, Archer and I were singing a song we both like today and I told him he had a good voice, and he said, I can’t sing, Ma.
I said, sure you can Arch. You just were, and you sounded good.
He said, yeah, about 3 lines worth and then I run out of air.
You know, I had not thought about that. There are always so many new learning’s on this journey. Of course, Archer’s voice is getting stronger and stronger every week as we continue in PT to strengthen those internal muscles. All good.

 

Back at the wonderful assembly on Tuesday, to drive home the message that Archer is still the same kid they knew before his injury, the OT flashed up a power point slide of an illustration of what is OK to say and what is not. She said, It’s OK to say, There’s Archer, he’s the kid with a disability, but it’s not OK to say, There’s Archer, he’s the disabled kid.
Well, in true fashion, Archer piped up spontaneously and said in his gravelly but still Archer-like voice, Hey, you can call me anything you want.

 

And everyone laughed. And he smiled his boyish and charming smile, and I knew our lionhearted boy was back in his element.

 

About 40 minutes later, Archer and his Shepherd OT had finished the slides and answering questions. The OT said, I know the Senft family wants to thank you for all your prayers and support.

 

I was shocked. There had been no slide about that and I’d never heard her until then acknowledge prayer. It felt complete. And it is very true. Thank you, OT, that was good of you.

 

She then reminded all the upper school kids: Don’t dive. Don’t leap head first.

 

And you know the rest of the story.

 

So, if there’s to be no leaping, then it shall be soaring. The McDonogh eagle shall soar! And he has been.

 

There is so much more to tell you.

 

Archer has been nothing short of remarkable these past two weeks.

 

Oh my gosh, speaking of lionhearted, it’s weird but you will not believe what Archer just showed me last night. He’s really into digital design now, well, as of the last three days, thanks to McDonogh, whose art department this week set him up with these really cool apps. He created his third piece of art. OK, so it’s someone else’s image he has manipulated with color and design, and it’s not a freehand drawing, shaky as it was, that he did of his snail, or of the earlier snail and landscape, but it is a design he did with his stylus using a digital program. Guess what it is? Yes, the face of a big lion. Isn’t that interesting. A snail. And now a lion. I’ll attach a picture for you. I think he’s feeling more like himself.

 

Displaying IMG_2933.JPGArcher lion 3.7.16

 

Back to the assembly for a moment. McDonogh was tremendous for allowing it and arranging it, cancelled as it was 2-3 times because of snow. Something that I think was a significant outcome is that it named the elephant in the room, or let the cat out of the bag, (or we might say the lion out of the cage back to his natural habitat), all those expressions that mean relief that something difficult or secretive has been aired. And so now begins that new chapter for Archer, his peers and McDonogh and faculty and all the adjustments.

 

I honestly believe it will be restorative for all to have Archer back on campus. He is uncannily even keeled and positive. It is hard to say what lies in store for him and for his being back at McDonogh. We hope it will be as good for McDonogh as it is for Archer. I imagine there might be some faculty or students who are afraid, but we face fear all the time and figure out how it can inform and guide us. It will just be a couple hours every day. It’s all we can work out really if we strive for continuing to give his body every chance it has for recovery which means reserving the afternoons for PT/OT. We are currently in discussions with McDonogh about hiring a nurse for those couple hours, but until then, Billy or I will accompany him and stay within shouting distance if there is any emergency. We will give him his meds and take care of all his bodily needs, foley flush and bag drainage, meds, respiratory cough assist and albuterol, trach care etc. before and after his two hours at McDonogh. Thank Heaven for the new rig!

 

Oh yes, Billy travelled far to get our new van, the Ford Infinity with a lot of head room, now converted for Archer’s power chair and with a serious heavy duty lift system, plus a bench seat in back for three seat-belted passengers. Billy returned Monday night just in the nick of time with it as we drove it for the first time to McDonogh on Tuesday. Billy put in a lot of hours to find that van for our tall boy in a tall chair. It’s not all tricked out, but it feels quite right, a bit regal with its headroom. Thank you, Angels and all the contributors who helped us purchase that van.

 

When we pulled away from McDonogh in the new van, we asked Archer on a scale of 1-10 how he thought the assembly and being back on campus was. Without hesitation, he smiled and said, A 10. And nodded again in affirmation.
A 10. Isn’t that awesome. What more could we want for a situation that could have been awkward, overwhelming and potentially negative. But no, Not for Arch. Not for McDonogh. It was a 10. The love was palpable. The unity is strong. Archer Strong. Archer’s Army.

 

Oh, I should tell you, At the end of the 40 minutes of assembly, I asked if all the kids who were wearing Archer’s Army or green for Archer shirts could come up on stage with Archer for a picture. That produced a rush of over 200 kids donning their t-shirts that they had made, purchased and sold to others as a fundraiser for Archer’s Trust. It was spontaneous and beautiful. And Archer was in the middle soaking up being surrounded by those he cares so very much about. If you didn’t see a posting online by McDonogh, here’s one for you. They were all so happy.

 

Archer McD assembly

 

 

Each one of those kids represents a family that has been so very kind and good to us, each of those families touching others who have also been so good to us. Thank you to every friend and family member who has prayed for us. Please keep praying. It is hardly over. But it is a time to celebrate fully.

 

The joy and the reflection of how far Arch has come. All of you on this journey with us. Thank you.

 

You know, something about Archer I have noticed of late that is also new is that when he is going to share something he’s excited about or has thought a lot about, it’s as if his whole body becomes animated, just like it used to when he was juiced by something. I notice him waving his arms around, a pretty good amount actually. That movement in and of itself is a little miracle. Thank you, Lord, for that ability he now has to wave his arms around. Granted, it’s still mainly his left arm which remains more activated than his right, but that’s just for now, right? Right! He’s doing great. With the strengthening of his biceps, something the kids applauded in the assembly, again very kind of them, as they knew the months of work that that small feat took Archer to accomplish, Archer is now a solid C4-C5 level of functioning. It’s really exciting.

 

But what has caught my attention is what I think may just be an idiosyncrasy of his recovery. Just about every time he lifts his arms at the same time, this motion, because of his arm splints, brings his hands to his face. It signals to me that he is in story mode. And anyone who knows Archer knows what he’s like when he is winding up to tell you something he’s excited about. He can be really into it. Since he’s fixed in one place and not walking around, I have noticed more how he turns his face to look away, kind of like looking up or down into the air, sometimes left, sometimes right, and I know from my neuroscience work that he is retrieving a thought, a memory, a feeling, a piece of data from his memory bank. I felt joy and thanked God for the new movement, and movement that restored Archer more and more to his natural mannerisms. But here’s the part I was worried about. When he lifts his arms with so much animation, his dangling hands often hit his cheeks and mouth. At first when this new movement began, I was concerned he would hurt himself batting his face with the floppy backsides of his hands. I decided not to say anything and see how it panned out. Then when it continued, I was worried a fingernail might scratch his eyeball. So I made sure to cut his nails as short as we could even though it’s hard to touch the left thumb as it is so extremely sensitive. (Can’t wait to see what might happen with that left thumb someday). I still didn’t comment on it though and just watched.

 

What I realized was that it only happened when Archer was talking about something he had experienced before, like recalling a concert with his friends or a time when our family was travelling or we were all together someplace. His arm movements which bring his hands up to his face give the impression of hiding, and remind me of the way a young child might do the same, believing he can’t be seen by others just by raising his hands to his face. You’ve seen how young children will do this. The years of studying child psychology and behavior explains that they really believe you can’t see them and they can’t see you behind their little raised hands with their eyes closed because the brain is not fully developed for cause and effect, time and space. It’s what makes the game of peek a boo so much fun. I wondered if maybe there was a part of Archer that he was hiding or didn’t want us to see, maybe not. But since Archer’s brain imagery and scans we had done in NJ are very gorgeous, I figured that’s not it. What I do think is more accurate is that those hands to his face signify not only his energized memory of something meaningful to him, but that, just the opposite of hiding, he is about to reveal something, something of his thoughts, something of himself to share with you. Even though it’s a bit perilous, I have come to like it very much. With the rate he is going with strengthening, this will probably only last a few more months. We shall see.

 

Here’s what I mean. This past Tuesday before going out to McDonogh, Archer had a 90-minute class with his AP Calculus teacher who comes to our house. Oh, yes, I have so much to tell you about that, in a minute. The issue was homework between class sessions and the amount of homework his teacher could or could not give him based on his physical limitations and that we don’t have any adaptive technology yet for calculus.
I asked S, his teacher, if he knew of a keyboard of sorts with the symbols like an old TS 90 slide rule calculator. He wasn’t sure.
I said, Arch, we’ll figure it out.
Archer said, Ma, no offense, but when I say the derivative of y with respect to x, you are not going to know how to write that.
I turned to his teacher and said, We’ll figure it out…friends, Dad, special keyboard, calculus Dictaphone, something. Go ahead and give him all the assignments you need him to do. Full speed ahead!
And Archer gave a huge grin. Really really big.
He turned to S and got very animated with his arms waving, and his hands brushing the sides of his face as he tried to tap his own head.
He said, S, I’ve still got what it takes; I’ve got everything I need from here on up.
And he pointed clumsily to his neck up to the top of his head.
S looked at me and his slight bewilderment had vanished into a big smile too. Well then, OK!, he said.
It was a cute moment. Archer’s outlook is awesome.

 

The way he got juiced up and began waving his arms, that’s what I mean about when he waves his arms.

 

That’s another miracle and gift of the Holy Spirit. Staying positive, allowing you to be enthused, inspired, not losing hope. Thank you, Holy Spirit.

 

So, let me tell you about school. Probably more than you want to know but it’s been complicated. Oh, my, it has been quite the puzzle.

 

McDonogh had been tremendous in their care and collaboration about Archer’s education both last Fall using their syllabi, guiding us on classes, and for this year too. But once Archer’s medical situation at KKI had deteriorated causing a set back of at least three to four weeks and then the recovery afterwards from the debris in his lungs, the tea leaves were clear that he would not be returning to McDonogh as planned in January and they could not provide teachers for Archer such that he would stay on track with his junior year.

 

The plan devised while we were still at Shepherd was to come back to Baltimore to get off the vent with our belief that he would be home for Christmas or by the New Year and he could begin back at school at the half-year point, January 4. Since we had seen how hard it was to find time for class and teaching, we had a plan worked out for Archer to take the minimal amount of classes this year and make up the rest next year. There was one piece of good news. Archer was essentially ahead in his coursework and what he needed to graduate and only had five classes he had left to take for Junior and Senior combined to graduate.

 

But another factor I had never considered was ongoing PT/OT. A very lasting impression was left on us by amazing quadriplegics we have met who have said to not stop working at rehab and recovery. We heard well more than one or two stories of those who had their initial rehab and then re-entered life and regretted not doing more rehab when the body had its greatest chance to respond. Those were learnings along the way, most in the last three months. We never had any idea before. Honestly, we thought we would do heavy duty rehab for 3 months, which is admittedly longer than the typical 6-8 weeks but what we had been told is about the max length of inpatient rehab, so that was our expectation at Shepherd. We though we’d come home for Thanksgiving, which we then extended in our minds to the week after Thanksgiving since Archer had to stay longer than expected in the ICU in Atlanta. Plans, constantly changing. And then we thought, that’s it. He goes back to school. It’s so crazy what we thought. We had no idea. None.

 

Today, we are committed to Archer having the full benefit of daily OT or PT for so long as we can. The challenge now is scheduling classes around that goal. A big factor, teachers and therapists work 8am-3pm and 10am-5pm, respectively. No nights.

 

So, my wheels were beginning to turn to create a plan working with both the city and McDonogh in January. We didn’t know when we would discharge from KKI, but thought it would be early February and so I needed to act quickly in a system that is slow to ensure Archer would still receive the teaching at home we had set up for him at KKI. We enrolled Archer as a Baltimore City Public School System student. I began scrambling for much of January to figure out how to get Archer the quality education he wanted, and we wanted for him. The crazy thing is, Billy and I had come to accept that we’d be happy for Archer just to graduate with his class given the circumstances and how difficult schooling was and how schooling and physical recovery do not travel hand in hand.

 

I can understand why, but it doesn’t mean I have to accept that as our fate or standard. While our experience thus far had been that neither rehab facility was that interested or equipped to provide serious schooling and thus I had to go outside the system to try and find good teachers, Archer’s availability and their availability due to their work hours were both very limited. It essentially left the two-hour lunch break to work with.

 

I felt that feeling in my gut that we were about to get stuck in the gap of systems again for what Archer needed, could do and what was actually provided that was quality education. Keeping Archer’s mind sharp and feeding his quest for learning and knowledge I felt was another key to his positive attitude. I tried so hard to ensure Archer was getting the English, Calculus and History at Shepherd, and that they would follow McDonogh’s syllabi which were all AP classes so that he could be ready and on track with everyone else when he started back second semester. The school coordinator really tried hard too. Archer presents an unusual situation to Shepherd. Most quads are young men, average age is 28, so he presented on the young side. But while at Shepherd you might remember that we did a lot of Shakespeare, Brit Lit, and Archer had received a great start in AP Calculus at Shepherd when we had the former Chair of the Math Department from Emory teaching him a couple times a week, basically positioning Archer in front of a large white board as he drew equations and formulas over and over for Archer to see. Since Archer had no voice and no way of interacting with his calculus teacher, that was the best method for both, even though most of that learning was pretty much one way. Definitely better than nothing. More like a webcam without the Q & A. Archer did have minimal air released through the cuff on his trach then, and we would do that, but his voice was so thin and the teacher’s hearing on the wane due to age that the set up was not perfect, but again, it was something and we asked them please, please, please don’t stop and please hang in there with our son. History class never panned out even though we tried. But that’s ok.

 

When we got to KKI, they had an in-house teacher from the Baltimore City Public School System but employed by KKI. She picked up the AP English and continued using the McDonogh syllabus but she too never got to US History. God love Billy as he got the syllabus and began showing Archer various films and TV mini series that tracked the McDonogh AP History curriculum, and then he and Archer would discuss the film afterwards.
The main concern was calculus. It appeared that all that time and effort might fall through the cracks because Shepherd did not have a calculus teacher. We appealed to the BCPSS Home and Hospital Program for a calculus teacher. We got the only one in the system and he is terrific. Unlike the teachers before who followed McDonogh’s curricula, however, he followed a BCPSS curriculum for basic calculus.

 

By January, Archer told us that what they were teaching him was not enough; he asked if he could be taught at AP level with the goal of being tested at AP level. After all, all of his junior year courses he had signed up for and been approved for before the injury were AP courses. Well, that put a new wrinkle in the plan. I personally loved that he said that, but I knew it would take an incredible amount of work to now be tested and prepared rather than just giving him enough of a standard of teaching to keep his brain engaged and occupied. I didn’t know what kind of work or effort it would take though. Our other big kids had had AP coursework, but all our children have pretty much been on their own for school work since fourth grade, so I wasn’t sure what I was setting out to do in this new system now, but I set out to make it work.

 

The long and the short of it is this: to get the quality instruction we wanted, we needed to enroll Archer at the Poly Technical Institute at BCPSS. So I went to do that. Not as easy as walking in and signing up. Transcripts, medicals, past testing, standardized tests, they all had to be found and presented. We are better now at playing by the entry rules if you will of big institutions to get in with the foundation set for what we really want which is a quality and personalized plan. What I learned is that their syllabi are rigorous and that their school has more stringent graduation requirements than the other schools in the public system. I found this refreshing, and also interesting. But also potentially problematic if Archer intends to continue receiving teachers from the Home and Hospital program and has now more than 5 classes to take while still remaining in OT/PT not only this year but next. For instance, Archer also needs not only US History to satisfy Poly requirements, he needs American Government too, and he needs Introduction to Technology, which is in essence an Engineering class. All good, and so interesting.

 

So, I spent a morning hanging out at Poly waiting for a meeting to get Archer enrolled. I made a point of waiting patiently, personally meeting those in the guidance office and ensuring all the boxes were checked on the forms I brought that everything they needed was provided. They set a meeting, and I came back the next day when the teachers and vice principal were available.

 

That was a memorable meeting because by the time it was assembled, I could pick up a vibe that I liked. I usually feel very at home with large meetings, but it was all so curious to me. The public school Poly entryway, hallways, guidance office so very very different from the schools my children have attended in every way, the décor, the floors, the feel of the place. But I liked it. I especially liked the conference room we were in.

 

I felt receptiveness, and I knew what we needed. I felt empowered and also vulnerable, in a good way. I really needed them and I wanted them to really need us. We need one main accommodation: home classes so Archer can get to OT/PT daily and to McDonogh daily for art and socialization. And Archer’s being at Poly will be good for Poly too. I said before the accident, Archer had wanted to be an engineer architect. Who knows what he will do now. Regardless, I told them, Archer Senft will give the world something extraordinary or important some day.

 

I began by telling them about Archer. I gave the short version, but more than the reduced one line. Something else I have learned along this journey is that you often only have one shot with large institutions to make your case, and the larger the institution, the more they need to know about the person, I mean the personal, the story. And you have to tell them; they will not read it in toto even if you have submitted a zillion papers at their request, or if they do, it will be read piece meal by a number of administrators each focused on and looking for their part of the elephant. You know what I said. So, I began, On August 5… and I told them about Arch. His recovery. What he could do before the injury and what he is doing now. How he was a student at McDonogh, how important education is to him and to our family and the classes and work he has been able to cobble together at Shepherd, KKI and now Home and Hospital and what we need. I laid out the three classes we were focused on this year plus the offer that McDonogh had made to help Archer with art, which they said would also count towards what he needs at Poly to graduate, and the two classes, Bio and English 4 he will be focused on next year for McDonogh, and the classes he would need to graduate from Poly. I tried to stress how critical it was not to have a gap in his teaching nor a delay related to administrative needs. We don’t have the time to wait.

 

I felt they were genuinely interested. And I learned that two of the three classes Archer is taking were classes he would have been taking as a Senior at Poly, and so we had some curriculum matching to do in order for Poly to accept what he had done. I also asked for an assessment of Archer and what he has learned as we want him to have grades and a solid transcript for graduating on time and for college applications. I know we are way behind on that, and I am not going to fret about it now, but I hope we are wise enough to anticipate what we will need. I told them we really need them, and we were glad to be at Poly because we believed they would be committed to quality education and learning. I ended of course telling them we think Archer is extraordinary but that all his progress and recovery is as a result of God’s mercy and the constant prayers of so many people everywhere in Baltimore, and in many states, and around the world. I said, Prayer is very powerful.

 

There was a silence, and it was fine.

 

I had already vowed to like the Poly people I met. I was just still on alert looking for grenades hidden underground, things I couldn’t see, things I did not know enough about to even ask the right questions about, the individuals who can blow things up with their silence and different agendas. Even with all my feelers out, I felt quite hopeful from the group. I am happy Archer is officially a Poly Technical Institute student.

 

The meeting adjourned after an hour or so, and another was set up for an IEP.

 

And the most interesting thing happened. One of the women administrators around the conference table came up to me afterwards and told me she reads my updates. Yes, it’s true. She said her daughter told her about them and so she was aware of Archer and his situation. I felt a rush of connection. I knew I felt a kindred spirit in that room. I sensed that they found me curious, that’s OK. I am very serious about getting Archer what he needs and collaborating and figuring it out together. And I am equally serious to do all we can to thwart delays. No time to waste.

 

Things began happening after that meeting.

 

The director of BCPSS Home and Hospital extended our 6 hours of weekly instruction to 8 hours now that the teachers will follow the Poly AP level syllabi and curricula. BCPSS Home and Hospital also said that Archer, if he chooses to continue with the home and hospital teachers and Poly’s curricula, will be the first to graduate from Poly and an independent school. Ironically, that may end up happening. We’ll see.

 

We were also able to get two other AP teachers for English and History. English and Calculus come to our home in the mornings, M, T, W, Thurs 8-9:30am. AP History happens on the lunch break 1:30pm-2:30pm at SCI at KKI. Archer gets OT/PT every afternoon 2-3pm or 2:30-3:30pm. As of last week, he will go substitute the morning PT for a couple hours in late morning 10am-12:30pm at McDonogh for independent art study and sitting in on an AP English class with his peers before heading down to SCI. Sitting with Archer at SCI at KKI with his AP History teacher highlights the amazing things they will discuss and talk about. Archer is back to reading and swiping books on George Washington’s biography on line and then talking with his teacher about it. It’s like a 1:1 book club, heavenly. I think Archer is going to do OK. We have dragon dictation and Siri, on both of which he relies a lot. It’s pretty challenging though as he has to think a lot before he “writes” as editing and drafts are much more arduous. So far, all is good and it works because they come to him at home and at SCI at KKI.

 

The IEP meeting was last week. It was my first of that nature. Even more people around the conference room table, maybe 12-13 folks. It’s a good idea to write down each person’s name and what they do. I learned about 504 Plans. You know, it’s also a really a good idea to ask what each person means if there is anything said that you don’t know about or understand. It’s that old mediator looking for grenades thing. And that is what I did. Whether they were forthright with me or not, I am not sure but I feel they were. Why wouldn’t they be? We are all about helping Archer, right? But I could see I am on another steep learning curve.

 

The biggest work around issue is Archer’s ongoing PT/OT and his commitment to continue with it for as long as he is able. Of course there is the issue of paying for it. So far, we have insurance coverage but our daily co-pay is $200. I shudder at how that amount will increase when we are out of insurance coverage and we have to go out of pocket. I hope that does not happen as we await the answers to many other routes of coverage we are in process with. More follow-up will be the goals for this coming and the following week’s tasks to find out about how long and how much. But what matters as much as a good education is good rehab for recovery. We do not want to compromise on any time Archer can be in rehab since the first 12-24 months are critical for a quadriplegic. And we have some making up to do because of the 5 months on the vent.

 

Again, we are faced with having to negotiate and collaborate and hope those with influence are willing to use their power in ways to help Archer get what he needs through channels and systems set up to do this, hopefully creatively as necessary.

 

Sure he has major mobility issues and many medical needs during the day that the school systems need to know about, but his need for ongoing physical therapy, daily, will be the main driver for our schedule for the Poly/Home and Hospital teachers and the couple hours time at McDonogh.

 

It was humbling to me that the 12 or 13 different teachers and assessors from Poly who filled the table at the IEP meeting were not familiar with McDonogh. One Poly teacher said as they were studying Archer’s transcript from his freshman and sophomore years, something like as she referenced McDonogh, I think it is a well-regarded school with rigorous teaching. A couple more murmured. But otherwise little seemed to be known about the school in the independent school system. And our meetings with McDonogh administration indicated similar unfamiliarity with the public school system, including academic requirements or accommodations, although they had heard of Poly by reputation. And why would either system know about the other? They would not necessarily. They orbit in different stratospheres. They do not seemingly need each other. But, it’s one of those opportunities it seems to me where one system could be working or knowledgeable about the other. And if and when they were, both would be bettered and strengthened. Even if it is just one person at each school who has the knowledge. Two great schools, two of the best in their respective lanes, public and independent. They may inform each other in a way that could help another student other than Arch.

 

They said the 504 plan or IEP, whichever it ends up being and they think a 504 for Archer will be for his profound lack of mobile and physical ability but tailored to meet his AP ability, since he lacks any impairment mentally and cognitively. The administrators and educators and service providers at Poly said they have never done a 504 of this nature, so we are working together on new ground.

 

It was all very interesting to me. I felt I could give information and learn a great deal from them. I had prepared myself by getting very quiet so I could tune in and listen to my gut and my intuition if anything was said that did not register or sit well. One assessor wondered aloud if Archer had brain damage and recommended a cognitive assessment, an Independent Medical Exam. Another wanted an educational assessment of what Archer can do and not do. Those were the two things that didn’t feel right but I just let them play out before I said anything. They resolved on their own.

 

Many of the Poly requirements will be fulfilled via work already completed at McDonogh, some will be completed via work he will complete at McDonogh. A hybrid if you will.

 

He wants very much to graduate with his McDonogh classmates. We hope both schools will work with us, Poly on his home and hospital classes, McDonogh on his art and the social interaction and camaraderie that we know also stimulates the brain. We have a somewhat finely orchestrated school schedule. We will be forging new ground with both BCPSS and McDonogh.

 

A note on art. We know that McDonogh is the primary place he can get exposed to and very lovingly helped with getting back into Art as well as to participate in a class with friends for both emotional and social stimulation. And they have arranged for 1 of the 2 classes to be moved just for Archer into a building so he can have access as the other buildings are not accessible to him in his power chair. Our first few days this past week at McDonogh were nothing less than very very good. Where else would Archer have an entire Art Department and three teachers giving their time to him to decide what he wants to do. A director who has the philosophy that art is everywhere. A teacher who is committed to hands on drawing and talking him through possibilities and a digital art teacher who is diving in with Billy and Archer on designs using the snail as a way to build a message of unity. Look for design competitions part of joinORANS.org. It’s very stimulating for Arch and I think he will be back in the saddle judging from the way he has not stopped all weekend practicing his swiping with his stylus and poking keys on his ipad to create digital designs. A form of art he had not done before, but one that is pleasing to him. An eye for design is an eye for design in any medium. And Arch has a good eye for design. It is so very very good. We are so very very grateful. I think we will see him produce good things. And he can experiment more easily.

 

He finally told me why he had not wanted to draw anymore. He said the shaky hand thing is just not enough control for what he sees he wants to do. The digital is different. He then told me that when his right arm is stronger and if he gets his right hand back at all, he will return to drawing as that is his favorite.

 

So, now you are caught up on what has been put together from 8am-5pm each day for Arch. The school/art enrichment/physical strengthening is very intricately woven and very interdependent for Archer’s progress. Including the first two weeks of full day PT/OT plus school, as we took advantage of morning afternoon OT and PT at the International Spine Clinic (ISC) at KKI out patient, for essentially 5 hours a day of physical therapy and muscle stimulation, while we were figuring out all the school things, we start week 4 tomorrow. Archer seems to be thriving.

 

Oh my gosh, that reminds me to tell you of an absolute amazing thing that happened at ISC at KKI. Trans CPG. That is a muscle stimulator where electrodes are placed at the T-11 and T-12, way low on the spine, and also on the abdomen. It’s in experimental phase, the research of one of Archer’s new PT’s. Archer was on his side on a table, and his legs are bent. He was told to concentrate using his mind to see if he could move his legs. Everyone watched closely, By golly, they moved. The PT was excited and tried to video. One of the Atlanta angels was visiting and she got it on tape. It’s really remarkable. They have tried it on people who have leg paralysis and she said Archer’s results were the best yet. He’s young and he’s determined. It is very hopeful. I’m trying to get a video of it, but here’s a video of a different activity to give you the picture of what Archer practices and does for hours on end to strengthen.

 

IMG_1643

 

The Creative Miracle has many facets. As you know we are believers in alternative medicines and alternative forms of therapy as well. The last few weeks have brought us some new homeopathic remedies, in addition to that which I know Archer benefitted from to get off this ventilator and help his lungs. The weekly acupuncturist we had come see Archer while he was at KKI for pain management upon arrival and then to open pathways for his lungs was part of Archer’s success too.

 

We now have the most wonderful ever reflexologist. She was a referral of a loving daughter who keeps up with us on the updates. It’s part of the Creative Miracle without a doubt. She is a jazzy grandmother type and is donating her time and love to Archer. She has many degrees and years of experience, plus she is board certified in acupressure reflexology as well which is similar to acupuncture without the needles. She comes to our home in the evenings. The first time she came, Arch was a little skeptical I think. Another one of Mom’s goofy ideas but as she worked on his ear, his left hand and then rolling the toes over and over and over, and then placing pressure on the meridians that effect his movement of his feet, he had thought he may have felt something fleeting. We will see what this brings after a number of weeks. It might be a lifelong pursuit but surely the stimulation of the feet is critical to his future possibility of walking. A neat part was an instrument that picks up chi, which is energy. And to watch Archer’s chi even in his feet and his hands is very exciting. It was strong, so the pathways are open, it’s just a matter of time I think.

 

So these last three weeks have been nothing short of progress and more progress. Archer is even keeled and happy, he smiles a lot. He is interested in his health and his future education, loves to see his friends, and as importantly, interested in the world and in others. Perhaps he will live with a message and example of unity. That’s certainly what it has felt like so far. Your prayers have helped unify us; Archer’s determination has helped unify his friends, and I think his school campus.

 

He’s never been a hard-edged or edgy person, and this accident has not brought that out in him because it really is not in his make up. Or if it were, it’s as if God has a calm and comforting hand in Archer’s approach to his life and would help to smooth it out. We thank God for his fatherly loving presence, Mary for her loving arms she continues to wrap around us and Fr. Bruno Lantern whom we continue to pray to for intercession as he endured life’s physical setbacks as well and lived a life of hope, an example of hope. We have taken to our hearts and believe very much that the person who hopes for everything, obtains everything. We are all so hopeful.

 

That said, there have been nights when I went to bed that I realized how far away I felt from Jesus’ presence and Mother Mary because the days now are so packed. Too much so. It’s hard to manage it all. I just want to rest in their love and presence, which is just a state of mind for me but one I have had to remind myself of more than usual as my mind has been full of so many other things. It’s just been so very much to manage. If it weren’t for the need to work, and hopefully do a good job as I can’t imagine a half way job, it would be easier for sure. I feel this constant pressure at the end of the day of all the things that I need to attend to and remember to do. The prayers and the food! have been incredibly helpful. I felt like a glutton even continuing to receive 2 x a week dinners. But we have needed them so much. Actually, I am concerned because all of Archer’s lunches are purchased at a café at SCI at KKI and I think he is putting on bad weight now. Things like that are on my mind, like getting up and making lunches.

 

It’s actually nuts the number of things that need to be attended to in a day, every day. Billy and I had to have a family meeting just to identify all the categories to decide who was doing what so we could stay in our lanes to conserve resources and hopefully reduce some of the pressure and stress, and possibly get some sleep. Categories like Nursing Care and companies, Doctor Care and appointments, Office Move, Office Re-location, Office Pack up and Give Away, Education, IEP/504, Social Security Appeal, Model Waiver, Hiring New Employees, ORANS, income, Archer’s Trust, OT/PT, Van location, conversion and purchase, Handicap parking requests, Roland Park approval for garage, Durable Medical Equipment orders, Power chair alterations, Skin Breakdown and care, Grant writing, Medical supply orders, organizing system for medical supplies, Art project, Social calendar, Adaptive technology, Being Relational book, Dutch, Dutch’s play costume, Dutch’s sports, summer sign ups, Cape May, Construction Punch List, and there are about 20 other categories including laundry, meals, lunches, cleaning kitchen, recycles, yard, pets, big kids’ jobs and lives, and you get the idea.

 

The reality is we know it’s not ending or easing up for awhile. But the wider lens on reality is, It’s all good. It really is.

 

While we are still in many ways trying to find our new normal, Archer is soaring, very happy, quietly determined and focused, keeping his eye on the prize– Getting his right arm strengthened and control back so he can draw. His therapists position him sitting on a table with one of them holding him around his chest as she leans him forward and he raises both arms and lays them on a table that is set with a game that has pieces or parts that need to be poked very precisely with his stylus.

 

The amount of determination he has on his face as he wills his right hand to remain steady enough that he can do this small feat is incredible. He is aided by arm splints we put on him everyday which you cannot see as they are under his long sleeved shirt. He prefers a stylus wedged between his four fingers, right through the middle split of his right hand when his hand is outstretched, palm up. The stylus is wedged into the Velcro strap around his palm, which is attached to the hand splints. All the movement comes from his bicep. All of it. He doesn’t have any tricep movement (yet) but he will work on that over the next many months or years.

 

And for honestly every single minute he is not in OT/PT or school, he is practicing his swipe and poke motion with his right hand. And he’s gotten amazingly good the last two weeks. I’d say he’s pretty myopic, even a bit fixated, on his practice. He wants to do it and he wants to do it well. He wakes up and as soon as we have him dressed, arm splints on and in his power chair, he is asking for his ipad and his stylus. He plays scrabble and Words with Friends and he even typed in a dinner reservation last night at Petit Louis for Billy and me and texted us much to our sheer delight and shock. He insisted we go out. Amazing. That is so Archer. Although it’s probably a survival move as he saw us get testy in the van this week. Thanks, Archer. Very generous of you.

 

As it turned out, he did have a bit of an ulterior motive as he had apparently orchestrated all of his siblings and cousins who are local to come over last night and hang out with him. Since every single one of them except Dutch is older than Archer, indeed all out of college except Dewey, I knew something was up when the first two arrived, pleasant surprise, and they brought a box of crunchy munchies, little coca colas, beer and wine. I realized he was having a party. That is so Archer. He loves a gathering and he apparently collaborated with a cousin to plan it. The world is opening up to him again. We left for dinner and then returned a couple hours later and it was so heartwarming as they had totally taken care of him, washing his hair, massaging his face with some new stuff as he for the first time is allowing us to put water on his face or even touch it as it has been uber sensitive. They had gotten him into his Hoyer lift, Dewey getting very good at that now, and into bed, undressed him and cared for the four pressure points I found on Archer’s feet this past week from tennis shoes that we think he has grown another size out of, so he is now overnight a 12.5 size and I need to get another pair of tennis shoes I just realized as I write this. He won’t go to McDonogh in slippers, even if they are (Manchester) City slippers! Anyway, all the kids were busy back and forth from the kitchen to his room, chatting, hanging out, of course Pete and Megan also had brought their new puppy Mav and all was good as they were getting ready to watch a movie together. I was really proud of them, and Archer was very happy. Very very happy.

 

Ever since we were discharged, there has been something incredibly different about Archer. How do I describe it. It’s different in that it’s as if he is infused with a spirit, an energy, of….Home. Yes, I think that’s it. We saw it on his home visit for Christmas, and we knew he returned to KKI different.

 

He is filled with the feeling of Home.

 

Home, it’s such a powerful word, isn’t it. Home is strong medicine. A potent emotional experience, promoting even a visceral feeling. I imagine that is true for most of us if we are so blessed and most of us are. Isn’t this true for you? You know what I am talking about. Home. And when we don’t have it, we yearn for it.

 

I think I’ll start to close now but I’ve had this thought cross my mind on a number of fleeting occasions since we have returned home that I’ll share with you. Being back in our home, the home I love and have nested for our children with all my heart over the years, in the neighborhood I love so much with the neighbors and friends I love so much, feels very solid, despite the chaos that I know will pass. We are so incredibly blessed to live where we do. And now that we are no longer under construction with dust everywhere and furniture covered and piled in corners, with old wall paper samples we are trying so hard to find remnants of on the internet and Ebay strewn about and boxes of plumbing and electrical supplies and paint and stain and boxes of our stuff everywhere etc, we have our home back. And it feels so good.

 

The doorways are now wide enough for Archer to roll through and the furniture is moved or removed to allow him to negotiate rooms. Yes, he gouged out by accident one of the new entryways, but we were bound to have one mishap, not bad. And yes, there are still piles of Archer’s new life of stuff everywhere, like posters and cards, especially our third floor where his bedroom used to be which looks like a medical supply cache, and then there’s our basement, both of which need some serious attention for organizing, cataloguing and giving away. But our home is fully lived in again, no longer just a brief pass through. It’s hard to believe we were six months away from daily living in our own home. Hard to believe as we love our home. We are all here again and it is glowing and pulsating with life. It is so very good to be home. So amazingly good. Arch has come home.

 

So why do we go Home? If you think about it, and I’m sure you have, we often go home to change our clothes, to grab a bite, to take off our shoes, to do our hobbies, to piddle around, to prepare a big meal, to celebrate holidays and special occasions but most importantly and basically, we go home to rest.

 

Let us all pause and take a breath, a slow belly breath, and breathe in the tranquility and comfort that our homes offer us. Even if they are messy and still a bit chaotic as is ours right now, or in need of repair, breathe in the safety and the familiar of your home. Maybe it’s your favorite pillow or blanket that comes to mind, or on the porch or the deck or your favorite view or room or special place you like to be. There’s a place in your home that is your favorite spot. Where is it? Close your eyes. Take another breath. Is that favorite spot inside? Is it outside? What surrounds you? What is under your feet or your back in this favorite spot? What colors are there, what sounds, what textures? What smells? What is it that is so familiar that calls to you in the favorite place in your Home? Is it lively or is it quiet? Are you alone or with others? I think these places that come to mind as our favorite aspects of home trigger the emotional memory of ease and comfort and at a really primitive level, basic safety. When we are broke and hungry, we go home. It’s familiar. And when we are in the routine of life, we still go home. To the familiar. Home, the familiar. As I write I am reminded of when my Grams first met Billy. He came home with me over winter break to my hometown of Springfield, Illinois from college “out East” as my midwestern family would say about UVA. After a few days of our being home, I heard Grams say to my mom, He’s like an old shoe.

 

It was the highest complement. An expression reserved for special people. An old shoe. Comfortable. Kind to you. Something you just want to slip into. Something that provides comfort and protection even after many many miles. I always loved that she said that.

 

I remember telling Billy and explaining to him what it meant as he had not heard that expression before. I think it meant as much to him as it did to me. You know that feeling of ease and contentment when someone you love is loved by your family as well. That’s a gift. I felt it too reciprocally when my mother-in-law would refer to me in the kindest of ways as her Prairie girl. I knew she loved me a lot.

 

Home has that quality of accepting you just as you are. That You’re home now and we’ll-take-care-of-you quality. We go home to be loved. We go home for good food prepared by those who love us. We go home for familiar surroundings, to be surrounded by those we love and what we love, from our children to our other creations. We go Home…for both rest and to be energized. And all that is Home is what has happened to Archer.

 

He is rested for the first time, without the lights and sounds that buzz and beep and tick and alarm all night long. And he is energized. It’s a quiet kind of energy but when he wakes up now at 9am on a Saturday morning on his own, and we say, Hey, Arch, how’d ya sleep? And he replies, I slept really well.
It’s a homerun. And just this morning he told me he slept through the entire night. There it is again. Home run. Running home. How good it is. Someday Archer will run to his own home, and I mean Run not walk, and not roll! Someday he will.

 

As for the sleeping through the night the last two, well, that might be because our nursing service did not provide any nurses for the midnight to 8am shift now that we are cut back to 8 hours, and so we, mainly Billy, set the alarm to do the weight shifts. We do them without any lights on and that is better for Archer.

 

Oh, the nursing. I’d say at the top of the list of what tires us most, or at least me, is having to train nurses. We thought we had a good company lined up. We had 16 hours of coverage the first 2 weeks, then 12 hours, and now we are down to 8 hours and it is very stressful. There is a seed of resentment I have to be aware of and allow it to pass through me and not get lodged. The difference in needs of a quadriplegic on a vent and off a vent is still the same re weight shifts, Hoyer lifts, bathing, bowel program and other needs that take a lot of physical labor. Thankfully we have some nursing coverage through our insurance but it is running out April 1 and the thought of it expiring rattled me a bit. All because Archer has not yet been accepted on the Model Waiver program, waiting for his approval for SSI and a little fiasco we had with that. We have essentially taken care of all of Archer’s needs during the day, but if we were to work full time, that would obviously not be possible, nor would it be sustainable in the long haul to have help only during the day but not at night with his bowel program and twice a night weight shifts. Then again, if we had to do this on our own without help we’d figure it out, but it would mean even more changes, and it would be harder. And for the most part, we do all of his bathing and grooming. But the nurses have done the getting him lifted into his bed and getting him lifted back out of his bed, undressed and dressed.

 

Thing is, nurses through an agency are as numerous as nurses on shifts at hospitals, and none, not one, thus far was familiar with Archer’s regime. So, I have trained no less than 11 nurses on the circuit in a mere 29 days. That means a couple hours every night as none of them were familiar with autonomic dysreflexia or with the digital stim bowel program, and many were not familiar with the Hoyer lift. So, it’s been a learning curve and I have been the nightly teacher. I am not sure why the company in hindsight has not done that, but it’s the way it is. And those we trained in the beginning were only day nurses so we had to get a new crop of just night nurses as the hours got cut back. Archer is having to participate more or less in this as well. I have made places in his room for their papers and 6 inch binder and their belongings and shown them what they asked me to do and try to be a host each night when a new one arrives. To try to instill some uniformity and to be efficient, I typed up all of his needs and how to do them and so I created a mini Archer manual for them. But they are scheduled and then they cancel. And they cannot get backups on short notice. For some, Archer’s needs are too much. As for me, I relish the 11pm and midnight hour as there’s peace and I can attend to work and the emails and the work of my business, the local and expected work that now that I’m back and at home, I thought I could do; the work that I have not been able to attend to for 6 months. But I am so tired by the time I get to midnight, especially when the nurses do not show up. I am pretty dogged tired. When my head hits my pillow and I feel home, I am acutely aware of how tired I am. Rest is so good when I get it, so good when Billy gets it, but it is fleeting. This too shall pass.

 

So, I thought I had my hands full with managing Archer’s stable of doctors, all of whom need to see him for some kind of follow-up. There’s his:
Nephrologist (he has developed kidney stones which we need to manage) Osteopath (he is unfortunately losing bone density we are keeping an eye on and supplementing still with Vitamin D and looking to get Archer upright soon in a new power chair that is being built for him)
Endocrinologist (for his sweating and body temperature regulation)
Cardiac Surgeon, and not a pediatric that KKI sent us to who did not do pace makers, but now an adult cardiac surgeon (we hope to have Archer’s pacemaker removed at some point soon). I want to do all we can to get the no longer needed hardware out of Archer’s body so he can be a good candidate for any new surgery for paralysis without limitations. It was startling back at Shepherd to learn that the diaphragmatic pace maker that had been recommended to help him breathe since he had no enervation to his right diaphragm may not have been possible because of the wiring of his cardiac pacemaker as no one wanted to take the risk of crossed wires or short circuiting. We did learn of a work around that could be done, but we had chosen against that surgery, and on look back, that was a very good decision, but the learning was there: wires and hardware in the body pose potential limitations on other interventions. So, thanks to other friends in the medical community, we now have an excellent adult cardiac surgeon Archer will consult with.
Occupational Therapist (to improve muscle strength for daily functions)
Physical Therapist (to build and improve overall muscle strength)
Pulmonologist (the master for his breathing, trash issues and eventual removal)
Urologist (for his suprapubic Foley catheter)
Dermatologist (for his sweating and now treatment of his facial skin)
Neurologist and his attending spine doctor (for his OT/PT course of treatment)
Internist (for his general health, tests and meds) Archer’s internist has lovingly visited us three times already at home and brought delicious food from the Polish market.

 

And of course, I have really believed in and continue to believe in alternative and complementary medicine and approaches, so we add to the traditional stable,
Nutritionist (who uses muscle response testing through me for Archer to unblock his system and increase his immunities relying on food supplements)
Homeopath (to prescribe remedies to allow Archer’s body to heal itself)
Acupuncturist (to focus opening pathways to Archer’s mid and lower organs)
Reflexologist (to stimulate the energy to the system and the organs) and
Massage.

 

And all of these specialists need contact and schedule management.

 

I had not thought about having to manage nurses, but actually we are finding that everything needs a conductor. At the very least a coordinator.
I am always looking for the good-natured nurse who takes an interest in Archer. He on the other hand is looking for a good natured younger nurse with whom he feels he has something in common. In either category there are very few candidates. I’ll give you an example.

 

A few nights ago, the front door pinged that someone was coming in. As much as I have asked every nurse who comes to please announce herself, they don’t or won’t. It’s very oft putting to be in another room and just have someone creep in. And, they need a place to be comfortable which we have created for them, but they choose instead to sit different places in our home, and some times I have heard Archer having to yell for them before he was heard, especially when they are watching TV from an iphone, and so I have needed to talk with them about that, but I figure it’s not fun being a night nurse. It’s probably hard to stay awake all night long, in the dark or a dim light essentially. So, I know that stimulation is important for the mind. But reading does not seem to be the preferred way to stay awake, and perhaps it would not be for me either, even though I think it might, but there is the Dark. The Dark. Our bodies want to rest when they are in the dark. It’s as natural as breathing it seems, so how are we to deny that or expect that night nurses are to be awake, really, but awake they must for it is their job. Anyway, poor Archer has had to ask some nurses if they could turn their TV’s down so he could sleep, and I have had to come downstairs upon hearing voices (smile) and learning it was the internet TV thing. Alas. But we have about 5 steady night nurses now.

 

But here is a funny one. A new nurse showed up a few nights ago. She was also of few words. I like to find out where they are from to build some relationship and they have mainly been from a number of African countries. Most if not all have a slow non initiating way about them. Waiting to be told. I personally prefer an initiator. Just please take care of it kind of thing. I recall my first large law firm where I worked had the Just Handle It award. Well, a few nights ago, one of the new most recent, or shall I say the latest, nurse –aren’t words interesting, is it the latest nurse or the nurse who was most recently sent to us? Anyway, in through our front door bustled V.
She entered like a little tank. She was short and stocky. As I was showing her Archer’s Hoyer lift, she was planted in her stance and looked up at the rigging from the ceiling and declared, I am vertically challenged.
She said it like a child would say, I am not doing that.

 

I knew what her tone meant, but I wasn’t sure if that was right or what her expression meant, so I said, I’m sorry, I am not sure I understand. Did you say ‘vertically challenged’?
She looked at me like I was the biggest idiot and said, I’m short. Can’t you see?

 

I said, Oh don’t worry. It’s electrical and the bar lowers. Watch.
She said, I don’t do that.
I said, You don’t do what?
She said, Do you understand me? I don’t do that.
I proceeded to show her and she was surprised how the lift worked as I got him into his bed.
We began to undress Archer and as I was removing his TEDS compression socks, I said trying to be cheerful, are you familiar with how to care for a quadriplegic?

 

She uttered in her heavy and thick Russian accent what seemed like a non sequitur, Vhere is towels?
Then it was, You take shoes?
And once Archer was undressed and I began to get the supplies for the bowel program, she says, Vhat you mean bowel program?
So, I asked, V, where are you from in Russia?
And she turned to me and said in her staccato Slavic voice, How’d you know from Russia?
She was dead serious.
She continued, The agency told you?

 

I looked at Archer and he at me and it was so funny we both started to laugh. I said, No, the agency did not tell me. I guessed.

 

So, there it is. Our lives at this moment.

 

We are looking for volunteers for our joinORANS.org movement and I would like to hire a wonderful executive assistant with a marketing background for my new office. Please say a prayer that all the things in the next couple weeks will fall into place. It may be spring by then.

 

I remain hopeful our sweet Coco will be returned. We’ve had two hot leads but they did not pan out; nevertheless, I feel she is within a mile radius of our house somewhere being taken care of through the winter. Her picture is on the Internet in many sites and we have fliered again. I hope she comes now that it is warmer.

 

Please also say a prayer for all those who have passed away in the last few weeks, one friend in particular for us we will miss tremendously. And grace will lead us home.

 

We are in the second or third week of Lent for us as Catholics and I am reminded of God’s mercy that knows no bounds. There is no darkness in our past that is too great for God to forgive. And so why is it that it is so hard for us to forgive others sometime? Egos can be so stubborn. We all have them. Do you want to forgive others in the way you want to be forgiven? I do. If there is anyone you need to forgive, call him or her to mind and let’s say a prayer for forgiveness for each other, for restoration, for unity. The most powerful forgiveness prayer I know is

 

Our Father, who art in Heaven
Hallowed be Thy name
Thy kingdom come, Thy will be done
On earth as it is in Heaven
Give us this day our daily bread
And forgive us our trespasses, as we forgive those who trespass against us
And lead us not into temptation,
But deliver us from evil.

 

Amen.

 

Sending love

 

 


 

 

 

Sunday, February 14, 2016

 

Archer Senft
Family & Friends Update
Sunday, 2-14-16 DAY 195, 6 months 9 days

 

Happy Valentines Day and ….
Welcome Home, Archer! All is good.
And so begins a new Chapter.

 

There’s no place like home. There’s no place like home, said Dorothy in the Wizard of Oz.
And it’s true.

 

Family and Friends Therapy is priceless and essential. As essential as our breath. Essential.
It is remarkable what has happened in the week we have been home. Yes! It’s been a week. It’s been a whirlwind and full of new shifts in focus and new hurdles to overcome and new joys to celebrate.

 

We drove away from KKI in the late afternoon on February 4 in a borrowed wheelchair accessible van with a few dents and scratches, Archer barely fitting in, but it all felt right. It felt like home and it smelled like freedom. I can’t describe it. It was easy. There was a familiarity as if for the first time in a long time. Sweet and normal. Gentle and simple. Steady. Grounded. We were very ready. Very ready. The anxiety I had felt the couple weeks before about bringing Archer home too soon had vanished. We had places to go, people to see, hands to shake and babes to kiss, no time for messing around, as that great expression goes.

 

It was quite apropos as we headed straight to an art show reception at McDonogh School from 3:30pm to 5pm, a reception that had been scheduled for many weeks and that I never imagined we could attend. It’s crazy how things turn out isn’t it?

 

It was around 3pm when Billy and I pulled up in the van to bring Archer home. 3pm. It’s a significant time. End of his usual day. Time of dying and living. Beginning again. And we were, beginning again. I felt the reset button being pushed. It was gentle. Truly as if we were entering a new chapter, a new day.

 

It was actually rather uneventful; in fact, completely uneventful. We had been moving things out of his room all day while he had a partial day of therapies. They usually discharge in the mornings; we were going in the late afternoon. The medical director had paid us a visit earlier in the afternoon to wish us well as he heard it was our discharge day. It was a nice kindness to see him. I am truly grateful for him. Never ever forget what a small group of committed citizens can do to change the world, indeed, it’s the only thing that ever has, as Margaret Meade the great anthropologist said. And in our case, one person. The medical director. He got it. We shook hands, said we’d likely see each other in our neighborhood, I told him to stop in anytime to see us and I meant it.

 

And, I bet he will. Why not. We’ve been through a lot together.

 

I left a few hand written notes for one of our nurses and a number of our respiratory therapists expressing our gratitude. I cleared our stuff out of the refrigerator and my personal belongings out of my small locker. Those were some of my last acts at KKI. I looked around Archer’s room, now very empty, indeed bare after we removed all the banners and sayings and jellyfish aquarium and CD and essential oil diffuser and all the orchids for breath, and the books and cards, clothes and blankets and all of Archer’s respiratory equipment, and even his mattress and shower chair, long story later, but it was a completely different space. It was time to go. We were no longer in room 316. While he and Billy and I were physically there, we really were not. We had left in every respect. And I suppose that was reflected when we rolled past the front desk of nurses on our way to the elevator bay.

 

It was just a same old same old day for the staff. As Archer rolled past and Billy and I hit the elevator button, the nursing staff hardly looked up from the front desk. But at that moment, I felt a jarring. That did not feel right. It was not just another day. We had lived there for almost twelve weeks, that’s close to three months. Just another kid being wheeled out by just another family. I had experienced other families in the parent’s lounge coming in to retrieve their belongings just as I had and their saying things like, Well, see you later. This morning is the morning even though you’d never know they cared. Things like that. I was struck by how many said similar things and that their departures were sour. It shouldn’t have to be that way. I was always sad as I hugged some I had seen and wished others well I had actually never seen. For us, it was as if we were invisible as we passed. We are not invisible. If for no other reason, we were a huge thorn in their sides, and I would think many would have been thinking, Thank goodness; there go the Senfts. But it was more like nothing. Robotic. Heads down or some talking in small groups among themselves, giggling, not aware of anything around them until their normal gets interrupted. It’s just an interesting observation.

 

At the Shepherd Center, they have a formal send off the afternoon before the day of discharge. The ritual only lasts 15-20 minutes and awards are given to the kid that are very tailored to him; all staff who have worked with the kid and are in the vicinity show up and anyone else working in the spine gym is present too, and it’s a nice send off, ‘graduation’ they call it. But no such thing or closing ritual at KKI. The director had asked me if I would be involved with future planning and rethinking and renovation of KKI. I gladly accepted. So much could be done to build community there. So, as we rounded the corner to the seemingly unaware or one could say, uncaring, which I don’t think is true as I am usually willing to give the benefit of the doubt but they sure could leave that impression upon someone, I said to the staff in the bay at the large front desk area, Bye Everyone! We are out of here! Thank you! See you later!

 

Many looked up and smiled and said, Good-bye, Mrs. Senft! Good-bye, Archer! Good luck! As the elevator doors closed shut behind us, that was it. That floor, that ward, that experience closed behind us as well.

 

We got off on the first floor into the lobby area, passed the front guard desk and the head guard always on duty whenever I was in and out at night or in the wee hours of the morning, came out from behind the desk to give me a huge hug and to see if we needed any help. I was really struck by that. That same man had given us infinitesimal trouble as he was enforcing all the bijillion rules of KKI. He and I had come so far as well. And we landed in a place where we genuinely liked each other. Very much so indeed. And it was not a surface kind of like. It was a deep like. No BS, real. He knew my piece of mind and I knew his. He knew my intentions and I knew his job. He joined me on believing there were too many restrictions but I accepted his role as enforcer. Similar to one of our favorite Respiratory Therapists (RT’s), he too would poke humor into what he had to do, and say things like, I know or You know, it’s just… and he’d make up a big number… Rule Number 657 or Rule Number 241. I had said that at one point in my ire and a few folks who really got it and understood my frustration and what I was talking about picked it up and it became a shorthand between us that eased the unpleasant aspects of confinement by calling it out, naming it, but not having to fight it anymore. It was just the way it is. Or at least for now, as we would say.

 

So, we rolled outside on this beautiful February day, within hours of February 5, which marks the calendar as Six Months from Archer’s date of injury. Six months from that one simple dip in the ocean. Six months and we were finally going home.

 

There was a quiet confidence I think Billy and I felt as we opened the van and the side entry ramp beckoned Archer inside. It had some moments of humor as we quickly realized he would not be able to turn around as his head barely cleared the ceiling and there was a build out for the interior overhead lighting that we would have to maneuver. So, Archer backed out a few times and in as he carefully and skillfully re-positioned his chair just so such that his head was to the right of the molded out light fixture, as as he faced sideways, perpendicular to the driver. He is so tall and sits so high up in his power chair. So, asking Archer if the work around was OK, he gave us the green light that it was good enough. He rarely ever complains. Rarely ever. So we then anchored his chair to the four super heavy duty seat belt like straps that are bolted to the floor of these conversion vans and have large hooks on the ends to fit the four metal loops on the base of his power chair. He was lined up and seating very very close to the two front seats. We laughed again because there was a new intimacy with Archer so close, we said it was good for conversation and I decided to hop in that front passenger seat rather than sitting in the back behind Archer to take care of any need as Billy or I have done on previous TLOAs. All that taken care of and about 30 minutes later, we were finally ready to pull out. I looked up and saw the social worker who monitored our case who was standing outside in the corner of the overhang pick up area watching us. We didn’t know anyone had come down. I caught her eye and she mine as she put her hands together and bowed in Namaste pose. How lovely. I nodded back. It felt really right. It was quiet and…. Earthy steady, grounded. We drove off.

 

I wish the other families discharging from KKI had a better send off. A number are quite bitter when they leave. More on that another time in a different forum as we are very grateful for the last part of our stay and how the executive level responded and joined us in finding creative solutions. We feel very blessed for that and for finding the exact right team and pulmonologist and having him accept and then figuring out how he could work with us outside the typical KKI system, which meant KKI and regulatory decision makers agreeing to grant him special temporary privileges which allowed him to step foot onto KKI premises. And as you know, he stepped foot many a times at Archer’s side. His watchful eye and steady hand in guiding and facilitating Archer’s weaning was exactly the partner we needed and he has been that partner a hundred percent. Being at Archer’s side on a regular basis made all the difference in the world. Doctors need to see and touch and watch and closely and observe their patients on such matters as breathing and heart rate and aspects of living that must be seen in total, if you ask us. It cannot all be done via a screen of data, whether in the next building or continents away. It just cannot. Or at least yet. Technology is amazing but the face to face experience with the live person, in person, on a regular basis, is very hard to replicate.

 

This face to face interaction between doctor and patient is also something that it seems to me is very much overlooked in the medical profession as the gold standard for healing. It is the gold itself for healing that can be directly provided by the hospital. It is the stuff of which healing is made: rapport and relationship with your doctor. It is as essential and life giving as FT and FFT (Family & Friends Therapy) which I would so urge every medical care facility to promote and facilitate and do all they can to foster and welcome. So, I call this other secret ingredient that is equally essential to FT an FFT: DT. Doctor Therapy. That rapport that a doctor has with her or his patient, DT, can only be developed in person to person, face to face interaction. Person to person private interaction, not flanked by an entourage of observers or foreign visitors or new medical students or interns. This may be a hard concept for the medical profession to grasp, especially Johns Hopkis, but DT is about the private one to one experience bedside that builds confidence and hope and trust. And it is as good for the doctor as it is for the patient. I believe that. Doctors are as put through the meat grinder as are patients on the long term stay. So, why not do this!

 

Another observation is that DT is not achieved in daily rounds. In fact, daily rounds tear a lot of it down. Rounding may have been the brilliant invention of someone around enhancing coordination of care and communication, all good. But rounds are really for the profession. One could easily and obviously say they are good for the patient too, of course. And they are. But are they really patient focused regarding the patient experience. I would say not. Rounds are good for the doctors, and certainly helpful to the family for communication if you insist as I did that they not happen without you, but they are not helpful to the patient and his or her experience who is essentially talked about like a white mouse in an experiment, with a lot of chin stroking. Not helpful to the patient at all. And very very far from rapport building and quality interaction.

 

So, let’s here it for DT! Maybe Archer will invent the technology for something that is revolutionary, but DT… well, may be. Who knows. But think of all the face timeing and skyping and how wonderfully awesome it is but…. Then you actually meet the person in person. There is a difference. Right? I am laughing right now as I think of all my single or single again adult friends who are on the awkward dating scene. There is every which way to get to know someone electronically. And to know a lot about them. But, it just doesn’t ever take the place of the face to face, the meeting, if you will. The way I see it is that if the medical profession were really smart, they would use the technology to free themselves by getting back, even demanding back, the time that is stolen away from them in regulatory paperwork and reporting requirements, to be with the patient bedside and for a period of time like 15 minutes a clip, with real conversation. Our experience is not unique I feel sure. Arch, Billy and I know that a primary doctor or specialist doctor on whom healing is very closely linked, like a cardiologist for a heart patient, an oncologist for a cancer patient, a nephrologist for a kidney patient, a pulmonolgoist in Archer’s case, and so on, that sees the patient in person is key. The real way to be able to listen fully and completely is face to face. And that is perhaps the most important skillset along with the ability to engage that I would equip every medical student and intern and resident and acting physician and doctor of many years with. It’s not something you get from a text book and not something you are introduced to one time when you were more junior in your career. No sir. It is something that is ongoing and active and revisited with purpose annually in training and daily in practice. For a lifetime of career. And this would include how to listen to the family and listening to the advocate.

 

As we leave the first leg of Archer’s journey behind, I am really flooded with so many ideas and desires for the medical profession. Another one is that every single person in the hospital for any length of time, needs an advocate. Ideally an advocate at the side of the patient every single day, actually and honestly, every single moment. It’s sounds crazy but there’s just no way the patient can watch and do all the things necessary for himself or herself. Every single med needs scrutiny, it really does, every drip bag, every new setting on a monitor. There are so many many mistakes made in hospitals. And they are made for so many reasons, not the least of which is constant changes in nursing and tech staff. My Lord, I counted the number of staff in each facility and would have to look back in my notes but in a mere weeks time, a patient could have as few as 15 different staff and as many as 50, in just one week of ICU, and while the numbers are not as high once in a regular hospital setting, it is commonplace in the long term stays to still have a gaggle of nurses and techs, some for us for instance in the last couple weeks we had never laid eyes on in two months or more. There is so much going on in a medical setting, the patient cannot and should not have to be taxed with worrying about any of this. (I hate to say this but I will as I believe it to be true. Because it is actually a fairly chaotic place a lot of times, or certainly at certain predictable times of the day, the medical profession is none too happy to ply patients in ICU and the hospital with all kinds of drugs that knock them out, alter their mood state and numb them out. And, one could say it’s in the name of compassion for the patient, well, I say maybe not. Think of the rampant drug use and abuse of high school kids that all starts from getting into a parents medicine cabinet reaching for the oxycodone. That then can turn into heroin use. One would be hard pressed to find a teenager or young adult who had a pill or heroin problem that did not start with oxycodone or similar common pain relieving drug dispensed like candy in hospitals when not needed and withheld in hospitals when someone is in horrible pain and needing a lot because of the fear of getting hooked. It’s a problem.

 

But back to the patient having to monitor and make all these decisions, no patient in a hospital for more than a few days should ever have to do this, or so this alone. A patient in a hospital- person—his o her main job is to focus on healing, rest, staying positive and getting better. They need peace of mind (see DT), and peace of environment. Maybe we’ll call that ET. ET phone home. Yes, I like that. Environmental Therapy. Maybe we can invent new places in ICU’s that are healing sanctuaries. I noticed the Johns Hopkins PICU which is new and very high end. It’s lovely. The focus seems more on bright and cheery, child like. It’s fine. It really is. But I would think that bright and peaceful might be what families and the children who are in bad shape in the PICU need most. Peaceful qualities for environmental quality have so much to do with lighting and sound. I am really digressing here again I realize, but I would like to see changes in ICU’s and even in rehab hospitals like KKI. You know the lighting is jarring and startling in the middle of the night as some nurses flip on the lights to dispense meds, or in Archer’s case to dispense meds, turn him in weight shifts, put on vineger soaks, take off vinegar soaks, put on his AFO shin splints, remove his AFO shin splints, put on his orthodic boots, remove his orthodic boots, suction him, inexsufflate him and so on. Many rooms and many many nights the lights are rarely off, other rooms the glowing monitors never cease (why can’t someone invent monitors that go to sleep like computer mainscreens after a few minutes that with a touch would come back on but are otherwise dark at night), just for starters. And as for sound. Oh my. The piercing sounds all night long for the patient. I honestly do not think any ICU is a place of healing. It is a place for saving lives for sure. And we are grateful. Eternally grateful. But it is also a place that aggravates and thwarts healing. That is hard to say, but in our experience, that was true. I really don’t think it has to be that way. I have so many ideas about how to minimize the deafening sounds of the ICU and to create ET healing sanctuaries.

 

But even in the long term hospital stay room at KKI for instance, the pulsox that was wrapped around one of Archer’s fingers to monitor his heart rate and oxygen saturation, affixed myopically as soon as he entered his room and for every moment he was in his bed, was often inaccurate and sent a false reading that would alarm a loud obnoxious pulsating beeper until someone came to silence it. I would often silence it but that only lasted a short couple minutes before it would go off again if the reading was still off. The staff at the front desk can see it, presumably going off, or they rely on hearing it. But after 15 or more alarms, and I knew each one as I would count them feeling generous to give staff a chance to respond before I silenced it. I am still not sure why it takes them so long to respond. They are always surprised or act surprised when I would say, some nights, every single time, something like, It’s on beep 10….

 

It can be very frustrating and more than that, it can be very disruptive of very precious sleep, as it can happen many times in a night with a kid; it certainly happened with Archer. And if you troll the halls at night as I often did as I would try to catch a few more hours of work once Archer was asleep, the beeps are going off regularly, falsely. The staff would casually say, Just a false read and re-position the pulsox. Some nights we used an ear but that was the worst for Arch, other nights a toe. As for Archer, for goodness sake, he’s not moving that much! But for the spasms in his arms or the body’s chicken wing up snap that his arms just seem to do regularly on their own which he does not like, he is not moving. But those movements cause a lot of false reads and the staff is very familiar with false reads as they are most commonplace. I heard a man who had just arrived next door to Archer’s room last week irate that neither he nor his child slept all night because of the pulsox false read problem. Ahh, so many little problems, that cumulatively create a very unpleasant patient and family experience. How would you like to have your REM sleep constantly disrupted and actually rarely can you go there due to medical interruptions. All this is to say, that I believe most if not all of these quirkly nettlesome problems have better answers if we dare to engage in meaningful conversation about changing the status quo.

 

So, there we were, Billy at the wheel this time in the van, for the first time, the three of us pulling out of KKI and heading up 83 North to Owings Mills. It felt really really normal. The three of us chattering away, and asking Archer how he was doing—better said, how his head was doing– on any bumps the van negotiated as Billy drove slowly to McDonogh. There were a few times where he was not doing the best as his head was pretty jammed in grazing the top of the van. But Arch continued to say he was fine. It’ll do ya, donkey. We were flooded with gratitude for the moment, for the van, for the ride, for the future. Have you ever had one of those moments or experiences when it’s like that? I bet so. I bet a few actually. I think they are related to transition times. And there is a definite physical aspect of moving in some way related to the mental and emotional experience. Ones that come to mind might be walking across a stage to accept a diploma, or an award, walking down a church wedding aisle, driving for the last time from a place to another place, we all have them. They are significant passages I think. It’s worth pausing a moment just to honor and take in fully the experience. And that is what we did. As we drove, we said, Arch, let’s just breathe in this moment. This blissful moment. It was very good.

 

We learned a good lesson too and that is that most of the side opening vans, which we need as we live in the city without a driveway and thus Archer will always be curbside and needing that side ramp that folds out or electronically lowers and raises from the side of the van, do not have enough head room for our tall lionhearted boy. He needs a minimum of 59.5 inches of clearance. We had been waiting and waiting on that measurement from KKI re Archer’s powerchair that is on order and he will have in another month or so. He’s in a loaner now. 59.5 inches from the van floor to the ceiling, at a minimum. It’s a bit of a quandary because they are not familiar with the Amy system chair we ordered since it’s very new and allows Archer to stand up, putting weight bearing weight on his legs and feet and also sitting him up even higher in the chair. But if we wait another 1-2 months and need to get Archer to and from outpatient every day, it’s not a bright prospect with $200 a day out of pocket plus $60 in cab fares plus the daily nursing help we will need. Doable for a short term but we are not talking short term here anymore now that we are discharged. Of course, Archer may blow another popsicle stand and go rogue on us and just get up and walk someday. I swear I think he will.

 

So, the van Billy thought he had secured on line got sold out from under us over the weekend because apparently someone else had been looking at it and showed up and paid. That van was in Detroit I think. Another that sounded really good in Louisiana just wasn’t meant to be either. Such a bummer. We are still on the hunt and will need transportation tomorrow back and forth for outpatient. But we will figure it out. Problem is that his new Amy wheelchair plus his height no longer fit in most standard wheelchair accessible vans that are on the market. It’s just that the likely next step up for head room is the really tall van and we were trying to avoid them as they may not clear some parking garages and such, and the price gets much steeper the higher you go in height. It’s always something! But at least we now have a height measurement as of last week which we have been asking KKI for all the way up until the time of discharge so we could try to find a van. We feel that these things should have been coordinated weeks and months ahead of time. Why they don’t know or can’t estimate a very important measurement is beyond me. Measuring Archer is super easy as he is not going anywhere. All we need was the height of the seat of the new chair. I asked repeatedly if someone, KKI or the distributor we are working with, could call the manufacture and ask them to go measure the chair from the floor to the seat in it’s lowest position, upright. It seems this is simple and very obtainable. What I am left with as an impression is that even people in the field, like OT/PT are siloed, like union workers, and say things like, It’s not what they do, and this siloing allows them to become insulated from the impact of what they don’t do and easily could. While all these people are good people, good people alone do not help move mountains and molehills. There needs to be effort. There seems to be a lack of really understanding what a family needs to do and have in place to bring a quadriplegic home and have things ready for him so that his life is not put on hold waiting for the system to respond at its slow institutional pace. It’s quite possible and indeed would not rock the system at all to merely stay ahead of the system and jumpstart requests anticipating what is needed, so that we stay ahead so that we end up being on time.

 

It isn’t rocket science. It just takes some thinking, planning and care. him ready so that his life is not put on hold once he gets home waiting on mandatory needs to materialize. I could help KKI with that process as well. After all, I had anticipated this and requested the letters of medical necessity before the end of the year on a number of Archer’s medical equipment needs to submit to the insurance company. The patient doesn’t submit, the facility, KKI, submits. So it caused a Chinese fire drill for them but it was done. I merely facilitated and orchestrated and stayed on top of each person who had a role to play and with the insurance company to make sure it was all done well. It just took effort. Ok, a little hairy that last week admittedly, but truly, a lot of that if not all of that could have been avoided if someone else rather than I had been anticipating what Archer needed. So, I thought we were doing alright. But what I have recently come to find out when KKI said it’s time to discharge early was that none of the items, approved by the insurance the first week of January, had ever actually been ordered and coordinated with the distributor. So, it was really a simple situation for me as Archer’s advocate. The facility can try to discharge all they want, now that Archer was off the vent. But not without a safety plan. And that included basic things like a bed, an air mattress and a shower chair. Again, not rocket science. Basic.

 

So, since I had last written you with careful collaboration with our pulmonologist, we were aiming for a discharge of February 8 that would give us a safety net of back to back TLOA’s over the weekend, all coordinated with KKI and the attending physician, with our coming back Monday February 8 to discharge, or alternatively, discharge on February 5. We ended up with a week of hell with KKI around discharge. The insurance company was fine with February 8; but it was KKI that put in for February 1, a week earlier and then an extension to February 3. It’s so incredibly interesting to both Billy and me that there are only two ways to explain it. Either KKI is so disorganized that it really doesn’t know it’s impact with insurers and what one arm of the organization is saying in reports, such as OT/PT saying Archer has completed, again plateaued at KKI, and our goal of weaning off the ventilator is met thus we go, again the inability to be dual goaled with both breathing and rehab, or…. KKI is so conflict avoidant and unskilled at negotiating with the insurance company on behalf of their patients that they are mere recipients, like amebas or scillia in the nose, washed and floating back and forth passively reactive to whatever comes their way but not proactive or engaged. I will think about and say more about that in another forum as I would hope to better KKI and help it become the well regarded spinal cord inpatient program it may have the potential to be.

 

What mattered for us was that we negotiated and I worked very hard with our insurance company so that Archer stayed the two weeks we had so desired, two weeks off the vent during the day until he was fully capped 24-7 and had two weeks of inhouse 6 hours a day rehab. So, mission accomplished, albeit with many hurdles at the end. And, like I said, I really meant it when I said that we would only leave when KKI had a safety plan in place as it it stood, there was no transportation (turns out they have very little experience with local folks as most of their clients are self pay foreigners whose children need interpreters, and the other category are more innercity folks whom they discharge out assuming they will use public transportation. But Archer’s radius expands downtown Baltimore and he doesn’t fit in many ADA taxis. KKI just didn’t have the experience with folks like us in many respects. And, in all fairness, unless a place specializes in para and quadriplegia, it really doesn’t have the experience we had come to rely upon without a lot of work to find it and put it in place. Again, we are so very grateful for the Christopher Reeves Foundation for finding us and getting us to Shepherd. Because we knew. And Archer saw what could be if he were off a ventilator. And he breathed for a precious one hour off the vent, albeit labored and frightened, as it was forced and premature but it was a good force and premature as he knew what he might be capable of. And that inner fire burned in him and carried him to where he is today. That inner fire of course is the Holy Spirit, and it is alive and well. Anytime we are fueled with determination to achieve something that is very hard but is very good, it is the Holy Spirit at work.

 

So, it was a crazy week and it was touch and go on whether we would depart Monday, Tuesday, Wednesday, Thursday or Friday. And, while all of that occurred, KKI stopped all scheduled therapy! I have asked for a calendar of the schedule for the week which comes on the Friday or weekend for the following week (that’s another situation of having to ask many times for such schedule as they are not used to a working parent or a parent who has other duties and responsibilities and needs to plan to be available for her child and others.) I had the schedule and it said a full day of therapy. But when no one arrived to get Archer on Tuesday and upon inquiry I was told he was not on the schedule, I had to question it again. I said no way. Archer would continue to have full days of therapy for so long as we were there. They scurried around and it happened. But we were then waiting for his teachers to come at the lunch hour for classes that we have really had to maneuver with KKI to get. It turned out, KKI had called then off too. So, that message however it was conveyed cost Archer a full week of lost classes. Schooling is the lowest priority of KKI. It was the same at Shepherd. It is very high for us. More on that in a moment. But as it relates to the fast discharge, it was true and what we expected: Archer needed those two weeks to get very strong, and very strong he got. Archer was doing so well, so quickly, that he was knocking the socks off everyone at KKI. He was like a rocket soaring in every respect. They couldn’t believe he was breathing off the vent. They just marveled. It is a marvel. It is marvelous! They couldn’t believe that we got the Echo and that he had programmed it. While it ended up not being usable sadly at KKI because their network would not allow it, even when I suggested using a hotspot as that was not a daily sustainable solution, it at least opened the door to other remarkable uses of technology that KKI had never used before. Assistive technology called someone from outside the inpatient to work with Archer as all were amazed. He was doing so well in OT/PT as he regularly was on stim and getting stronger with sitting for a couple minutes and as he began to use a stylus that we had from Shepherd that had been in Archer’s mouth and which Billy placed in his right arm splint, yes you heard that right, his right hand. Wee oo! Archer was just waiting and working on the use of that right hand and now he had it. Of course, he cannot actually feel his right arm or hand or fingers but he can move it with the strength of his biceps that are quite strong now. And so what did he do with that stylus that revolutionized his daily existence? He swiped open his ipad. It was a big deal. It was as if he swiped open the wardrobe in the Lion, Witch and the Wardrobe and his life changed, again.

 

This simple but complex movement for Archer lead to swiping open his phone and using Siri in more assertive ways to contact friends and send texts because he could now open his phone to do so. A whole new world. And, he could swipe open a face time call when we called him so we began furiously and regularly calling him every night, patching him in to all kinds of things that were happening daily at home and at night with our family so he could be part of us and have more FT when he was in KKI. It was as if he became one with us, totally integrated into the daily interactions that are of consequence cumulatively in their feeling of connection. So, whichever parent was not with archer, we face timed. Whichever sibling had something to share with Archer, a new song, something they had heard to tell him about, just to say hi, or to ask where they could find something at home, it was a huge leap into the new new normal. Archer Senft had hardly plateaued. He was just beginning. And the new world was just beginning to open up. The world Shepherd had promised us when we left Atlanticare five months ago, but was…. well, delayed because of those darn lungs full of salty seawater and loads of bacteria, was now becoming a reality.

 

So, while KKI presented us on Friday with discharge the following Monday of February 1, we said, Are you kidding? There was no way they could pull that off. And indeed, by February 4, it was still chaotic. But we were very ready to go. February 4 was the exact two week date, our goal for staying, since being off the vent. We felt in a deep intuitive way that that two weeks was needed for strength and for getting to the place of very ready. Not kinda ready. Not ready but a little scared. No, very ready. And very ready we were.

 

While we learned that the bed we had selected in December still had not been ordered, and the air mattress that we needed they were not able to locate, I merely said, we are happy to discharge if you can put in place a comprehensive care plan, and that begins with a bed and air mattress and shower chair and home nursing and meds schedule and supplies distributor etc. I asked them how did they propose to send Archer home without a bed? The attending physician actually said to me, Well, you could just move his old bed into his room and use that. I realized she had truly not given the issue any thought. Again, not coordinated. She has her piece, others have theirs. I suppose. I looked at her and said, You are kidding, right? You want to discharge him without a safety plan and have him wind up back in the ER with bed sores? He has been on an air mattress with a machine that blows air constantly in it specially designed to help prevent bed sores ever since he was at Shepherd. Do you think for one minute that I would have our son discharged to a regular mattress? And that we would be destined not only for the emergency room but for many weeks thereafter of having to stay in a bed with a special air mattress that I can assure you they’d locate and provide then. We knew that chapter. It was Shepherd in the early days, remember? It was the reason for the air mattress bed, and the remedy for a not bad bed sore was weight shifts every 15 minutes around the clock, 24-7, to give the body the blood flow it needed to aid the healing of the beginning of bed sore. And that was three weeks and 3 days of that at Shepherd. No way were we going anywhere without a bed that lowered and raised and the special air mattress we chose successfully ordered and delivered.
She said she would get back to me.

 

She did the next day with a remedy that they would get a hospital loaner bed to us. I asked about the air mattress. She did not have an answer. I repeated the need. Happy to leave, but they needed a comprehensive safety plan for Archer and that included a hospital quality bed and an air mattress. The following day, she said that they did not know how to get us the mattress we needed, as we were not an institution. I said, Then you could send him home with the one he is on at KKI until ours arrives and we need confirmation that ours will arrive before we go. I have learned a few things along the way. There was no way I was going to accept their sending Archer home on a makeshift bed and regular mattress. No way.
A regular bed! Because I had very little faith that the proper equipment we had selected and had approved would be ordered and arrive. And, I was not going to let Archer’s health get caught in another institutional gap.

 

So, we ended up with their delivering a temporary hospital bed and they told us to take the air mattress he had at KKI on his bed until they figured out where to order one for us. So be it.
So, Billy made a couple trips in our car getting Archer’s air mattress off his bed and other pieces of respiratory equipment we had begun to rent a few weeks ago transitioned to our home. It’s actually a lot of stuff Archer needs. Kind of reminds me of a new baby or toddler with the crib, the port-a-crib, the big stroller, the umbrella fold up stroller, the diaper bag, the breast pump, the attachments for the double breast pump, and all the baby stuff like cloth diapers and lotions and powder and Desitin and newborn mucous suction bulb and baby monitor. It’s a lot like that with all this equipment. But just about everything that Archer needs is electric. Everything. It all needs daily charging or electricity to run at all. I was reminded how grateful I am for the generator. It is peace of mind.

 

So, as we drove up to McDonogh it was about 4:10pm. We had planned to be there by 3:30pm but that did not happen. On our drive out, Archer had checked his texts and learned that that one of the heads of school had sent an email out to the juniors to let them know Archer was coming. He asked me why I asked her to do that. He felt a bit conspicuous I think. I told him I had not but I had let them know he would be attending the art reception, afterall the whole art show was for his benefit. He said he felt a little self conscious. Archer is a rather understated person a lot of the time. Not always, but a lot. We talked about it on the drive out. As we gently turned right and entered the McDonogh long driveway, the many yellow school buses were pouring out of the school filled with kids and headed out. Billy said to Arch, Don’t worry, Arch. We are late enough that any kids who may have come to see you are on the bus on the way home. And we laughed. We pulled in front of the new St. John building and we were greeted by the head master and the associate head of the upper school. It was very unexpected. I don’t really know why I felt it was unexpected but it was as if I believed Billy that we had kind of missed any fanfare that may have been amassed at 3:30pm but would not still be there at 4pm or so. And, what raced through my mind was that I was so glad Archer had the chance to see his fellow art students earlier in the week when they came to see Arch at KKI and Billy and I had accompanied him to the lobby to spend time with them all. It was really lovely and a true labor of love, organized by his art teachers. I learned a couple things to about Archer. HE was showing them how he could swipe open his iPad and someone asked him what it was like. He responded, Pretty awesome because I can now do something without having to ask for help. So, it really was a milestone. And what do you think Archer did in that first week we had that capability? He created a new play list. Of course he did! Music. Our children really like music. Archer had made some good play lists before. He hasn’t been able to do anything like that since. But he sure did last week. He titled his play list, I Can’t Feel My Legs, but I’m Not Blue. That’s so Archer. It’s a spoof on a song, I can’t feel my face when I’m with you. Archer says hat is not a very good song but the title inspired him. It’s about an hour of songs. Anyway, he uploaded it to song Cloud. It was picked up by a music producer friend and sent around and it now has over 1300 likes! I think that’s a lot. You may want to listen to it. He was talking with his fellow art students about it. Anyway, the point is that it was a special visit. I pacified myself that he had had that connection thankfully since we probably missed the kids but he could now just go and see the exhibit. It’s funny what can race through a mind based on one set of new data stimuli.

 

So, while it was a pleasant surprise to see the faculty come out since we all had convinced ourselves we were late and missed it, it was also not surprising at all as they have extended them selves in every way to Archer and our family. McDonogh has been so very good to Archer. As Billy and I finished unhooking Archer’s chair and guiding him onto the ramp and not off of it since he had to go backwards due to the head issue, the mood was picking up energy. As Archer’s chair hit the pavement and he turned his powerchair around, it was like Michael Jackson as little kid, doing one of those spins and facing us, the audience. Archer turned and faced the entry to the new St. John building. It felt really celebratory. Really exciting. The peaceful quiet conversation and banter Arch, Billy and I had had in the van seemed a wonderful soft prelude to the rising exuberance I felt swelling in my chest. I felt my tears as I watched Archer begin to roll towards the doors and the administrative leaders by his side. It was quite a moment. I was so proud of him. I was so grateful for them. I stood by the van just watching and taking it in.

 

I didn’t want to be teary. So, I shut the van door and stepped into full stride to feel the exuberance and joined the wave of joy that seemed to be washing gently over us all. We all walked briskly even running to keep up with Archer who was rolling fast. He was clearly eager to get inside and I could tell no longer feeling any pressure by the way he maneuvered his power chair forward and onward. We were all caught up in the moment of happiness and breakthrough. It was not just a visit. It was part of coming home. Re-entry. As if Archer had rolled out of that van, turned and entered his old life in a new way. It felt so very good. I can only imagine what it felt like for Arch.

 

So, there went Archer
Running to keep pace with him, he rolled right through the open front doors, hooked a right and went straight to the elevator. His head master was simultaneously shouting ahead of him, The elevators are on the left, Arch! We caught up and Archer beamed as he told us, I remembered where they were because I helped Mrs. O carry some art stuff upstairs once.
And so there it was. The new building is not even a year old, or have we lost track of time? Perhaps. But it’s very new and such a blessing as it and the other new building, the STEM building, will be the two school buildings accessible to Archer. It’s so ironic because in 8th grade, when Archer chose to go to McDonogh over another beloved school of our family, he told me, it’ll be nice to be with Dewey, Ma, but I really want to be in that new STEM building. That had struck me then. What 8th grader cares about a new STEM building as the reason for choosing high school. Maybe many for all I know. But I recall it vividly. Archer cared. Thank goodness for those new building as he might not have been able to return due to access alone.

 

As the elevator doors opened to the third floor, what greeted Archer was so beautiful. The entire corridor was lined with his buddies from the lacrosse team, soccer team and basketball team. There were so many handsome, healthy, bright and attractive boys in their kaki pants and dark pullovers greeting Archer. I was so deeply touched. I was behind Archer in the elevator so I do not know what his face registered but I imagine it was very joyous. And the neatest thing, Archer powered his chair out slowly and stopped. He just looked at them all, he took it in. He really drank it in. And then he lifted his right hand to give hand shakes of a sort, more like hand taps, to each of those dear boys as he slowly powered down the corridor. I knew they had been waiting a long time and most probably had some kind of practice they needed to attend but they were there, so many of them, maybe 25-30.

 

Then he rounded the corner into the atrium wide area and we heard a big, Yeah! Archer! There was a large gathering of kids and teachers, Welcome back, Archer! Their faces were all so expectant and beautiful. Thank you to each of you who came, who stayed after school. And, we were there of course for the art reception for the Art for Archer art show that McDonogh students created. The show was curated by the amazing leadership of the art department, with all proceeds of sales going to Archer’s trust. What an amazing and such a meaningful thing to do. They chose 3 or 4 of Archer’s prior paintings and had posters available for order and sale, and they made a postcard book of selected sketches and designs which Archer had drawn in the past couple years of art and design class which the art department still had in some of his notebooks. It was all put together so lovingly and carefully. And one parent was matching each $20 postcard book sale for a period of time. Just amazing. But it was the current students’ works that were so fantastic and beautiful. Each piece was unique unto itself, many quite intricate, all creative and thoughtful. The students had been working on their art since last fall. Each sold for $50. Isn’t it amazing what love will inspire.

 

I have been thinking a lot about that. How much love inspires love. That reciprocity. And how much love inspires creativity. I hope we can help you in the ways you have helped us. And the ways you have inspired others and been inspired to help us raise money for Archer’s many needs now and ahead. It’s so appreciated and we are also very touched by each of you. To give you a flavor of some the creative ways that have emerged from the love we feel from you:

Two grade school friends have made and sold t-shirts of one of Archer’s pencil drawings and his old signature. A high school friend has made and sold t-shirts and sweatshirts of Archer’s Army with one of Archer’s graffiti designs on the back. A mom friend gave a spinning class and all who came contributed. The younger brother of a dear friend of Dutch’s made and sold Gatorade Archer Strong bottles. My high school friends in Springfield, Illinois, sold Pray for Archer and Archer Strong wrist bands at every home football game last fall. A Boys Latin Mom and the Mt. Washington Tavern had a dinner and silent auction. Our oldest children Paula and Pete and their friends from UMD planned a waterfront gala and Petey’s girlfriend Megan and he oversaw an incredible sports oriented silent auction. Dutch’s friend having a birthday party but asking for contributions for Archer in lieu of gifts to her. A family who is choosing not to go out for dinner once a month and is sending Archer’s trust a monthly check for what they otherwise would have spent. McDonogh and Gilman moms together sold Archer’s Army t-shirts and buttons and cups at the 150 year celebration game of rivals. A local band played and collected donations for Archer. My nutritionist has a pray for Archer and donation box at her office. Just amazing actions. Surely this is part of the Creative Miracle for Archer.

 

One of our biggest challenges is still transportation, then it will be the cost of OT/PT once we have exhausted a mere 30 days, and then it will be the ongoing nursing care. That is another time to tell you about the 8th nurse in as many days that has been sent to us and every single one needs to be trained by us, for about an hour or two every night on, well, everything. They are not familiar with a hoyer lift, with digital stim bowel program, with Automonmic Dysreflexia. Archer is an incredible sport about it all too. But our insurance said they would pay for some nursing but not what they would have had he still be on the vent. We can’t win for losing as my mom used to say. But we have 8 weeks of various hours. I asked our insurance company what the cost is compared to an ER room or inpatient thinking it would might incentify them to extend more coverage while we are anxiously awaiting Archer moving up on the Model Waiver list, which is essentially Medicaid for children. It’s a prized list we have been on since November, waiting for services. It’s hard to say how much longer it will take. When we do roll off the waiting list, then part of nursing and OT/PT are covered until Archer turns 18. But until then, it’s a bit of pins and needles. The nursing cost is $1690 a day we were told if 24-7. Can you believe that. Who can do that?

 

Archer does not need nursing a round the clock per se, but the dilemma is he cannot be left alone because of his trach. We take that pretty seriously. Another important two things happened in the last week of our stay at KKI so I knew there was good reason to stay. We had a scare with Archer and his trach. Our pulmonologist said Archer could go to the smaller Smiley trach, size 4. So in his last trach change at KKI, we switched out for the smaller size. We were told it would be a smaller stama hole in his neck. What we didn’t appreciate though is that it is literally a smaller tube inside the trach, the inner cannula, down into his lungs. So what happened is that Archer had an episode of not being able to breath and we tried to inexsufflate and suction him. The RT was not successful as he began to lose air. He panicked a bit. Everyone did a bit. It wasn’t a good scene. This was just a week or so ago. The RT then reached in and pulled out the inner cannula. It was totally clogged with thick mucous coming up from Archer’s lungs. Too thick to pass through the new smaller inner cannula tubing. They said reach in and pull it out and get another clean one to put in. We never had to do that before with the Smiley 6. So, lesson learned and much appreciated. I am convinced that had that happened at home, we may have been on our way to the ER or doing CPR or something.

 

The other situation was something more tragic but very much related. The day of our discharge one of our RT’s came by to tell me about a young boy, a toddler, whom Archer had liked very much. He and Archer were two of the only kids in the spine gym for a while at the beginning of our stay and both had trachs, albeit Archer also had the ventilator. This little boy would toddle over to Archer and just stare at him. Archer, who adores babies and little children, would smile back at him and say, Hi. Out RT said the little boy had died. He had been taken back to Saudi Arabia and was in a hospital there and the word was that his trach popped out as they can do and no one was there with the little boy and he panicked and couldn’t breath and died from suffocation. It’s gasly and it really rocked Archer and me, a lot. So, we talked about the importance of breath again. I tied the situation of Archer’s own panic with the clogged trach as well as the potential that his trach came out if ever he were by himself (which is why we can never have that situation), but how he could keep himself alive for a very long time regardless with deep breathing and good breathwork. Archer really took that to heart and I think it provided relief in the way something that makes you feel secure provides. Like a full tank of gas in your car when you were otherwise close to empty, smile. Anyway, I felt there was some important significance to both those events and that Archer learned from both. Oh the breath, the glorious breath. Let’s all breath in the gratitude for life……deep belly breath, drop your shoulders and relax, and exhale out anything you were holding that had you uptight or just tight, like death of someone you know or death of that little boy. Exhale it out with good wishes and prayers. There are so many who are in need of our prayers and exhales.

 

I just thought of our pets for some reason, probably because of our recent situation. Let me tell you that we found Rosie our little cat. Yes, we did. On day 3 of the big snowstorm after I had shoveled for six hours, Billy got home to meet me and trade places. It was late at night, moonlit cold icy winter night, and as I was making my way down the shoveled sidewalk with three feet of snow on either side and Billy was following me carrying my bags for me that I would walk back on the sidewalk down a couple blocks to the main road where he had parked our car since our road was not yet plowed, it was very very quiet. You know how snow is. And how it absorbs sound and it is so very very quiet. And it was very very late, midnight or so.
I heard him command, Rose! Rosie Come Out!
I turned around about to tease him that he sounded like Jesus telling Lazarus to Get Up and Walk! But as I looked around, Billy was dead serious. He said, Shhhh. Hear her?
I stopped. Ever so faintly in the quiet of the snowy banked night, I could hear her. Yes. Little mews.
Oh my gosh! Where? From the front of the house. But where? No way to get there for all the snow. Billy dropped the bags and plunged into the snow towards the sound. As he got up and tried to tredge through, he could not. It was just too deep. We listened again. Where in the world could she be under the snow? Then we realized. The window well. She was in the window well and there was at least five feet of snow blown by the wind piled on top. We both raced inside and down the basement to the room where the window was. Of course we couldn’t hear her. The room itself was practically sealed off, crammed with furniture and boxes and coats from the old closet, basically the three small rooms that had massive stuff in the old cabinets and such that we had to move to gut the area for Archer’s new space. It is so weird because the light bulbs are also burned out in the room or ca fuse was blown and I was trying to get in there the day before but it was dark and I put it on a list of things I had to take care of. But something had propelled me in the day before to that room. There we both were in the doorway looking at the stuffed to the gills room and wondering how to get through that room to the window well? We are coming, Rosie! Hang in there, here we come girl. It’s OK. Here we come. Well, we of course managed to pick our way through at lightening speed. Then we had to figure out how to open the window and screen. There she was. Hi Rose! Safe, apparently warm and insulated from the snow, 3 days later. Hungry and thirsty. Still rotund. So, that is the very good news. We were so grateful and relieved.

 

But a mere week later and with all the commotion of the first two nurses in what has since then been a stream of nurses and new people entering our home, Billy took our dog Coco out for a walk last Friday. It was the first day Archer was home, He took her on their usual route to St. Mary’s Seminary and into the woods where Billy takes her off her leash so she can run in the woods everywhere for a half hour or so as he trudges through on paths and then when he emerges into the clearing, he calls for her and she comes. I know their path well as I follow it as well when I used to join him over the years from time to time. But this time Coco did not come. He had seen her tear after a squirrel or fox or something. Not uncommon. It was late in the afternoon. He waited and called again and again. He felt he needed to get back to Archer. There was a pretty good amount of commotion in our house that first full day. He kept on walking home thinking Coco would catch up. She never did.

 

We are bewildered by it and cannot understand where she is or what happened. No one has called. He has returned and combed the woods a number of times, and we have now walked and driven throughout the neighborhood. She is wearing her collar and tags, but no one has called. We have listed on the list serve and a neighborhood app and visited the pound and SPCA and called the city. And Paula I posted fliers and again went out night before last and posted 150 more with her picture. Australian Shepherd, auburn red color, golden eyes, 9 years old, female, friendly, likes to please and would easily go with someone. And it was the night before another snow fall. And it’s been very cold since then. We really think she went farther than her usual territory, and has sought shelter with someone and they are taking care of her. She is the kind of dog a lot of people would like to have but it’s a mystery why they haven’t called us. Unless she lost her collar going under a fence or something. But it’s unlikely as it is not a collar she could easily lose. We have so many signs up. Please say a prayer that Coco is safe and please say another that she returns. Ok, I know. Losing two of our pets. Yep, overload. There are definite distractions in our lives right now. We are more distracted though now that she is gone. It’s just not the same. And she has been through a lot with all the workmen in and out of the house in the last 3 months. She did well. She is a rescue dog to begin with. As in, we rescued her. But you know how it is with rescue dogs, you find and need each other. Paula and I found her at SPCA. No one had claimed her for over 3 weeks. She was catatonic, a lap dog they had her listed as at the SPCA. She was listless. But she had these beautiful golden eyes and such a pretty but sad face. Highly likely she had been abused. But maybe just sad. We couldn’t tell. Anyway, we claimed her. She didn’t come out from behind the sofa for two weeks and it was over 6 months before we ever knew she could even bark. She was super afraid of men and would cower at any thing that looked like a bat or something lifted that could strike her, including a camera which she would retreat on so we have very few pictures. She has come along way. That was over 7 years ago. Coco. We have loved her a lot. Loved and lovable. And she loves Cape May. Loves the beach. Loves the rural aspects of the island. To aid in finding her, we are praying to St Anthony, the patron saint of lost things, and have joined as a family to imagine a golden cord that connects us to her hoping to send her the same kind of energy that you all have sent Archer with your breath. We will keep you posted.

 

Always so much going on. The yang and then the yin. After losing her, Billy came home to visitors. This time two young neighborhood girls about 5 and 6 yrs old and their mom. They were holding a little red box and shared that they had drawn pictures and made lemonade for an art and lemonade stand every weekend last fall, raising money for Archer. They were waiting for us to come home. They brought their $85.13 to Archer for his trust. And the little girl handed it over to me. Very prized and very precious. That is a lot of money for a lemonade stand! It was all so touching and so beautiful. Isn’t that beautiful? Two shiny pure little girls doing such a good deed. Archer is so blessed. We lost Coco and come home to this. This journey is just constant over and over ups and downs, emotional roller coaster.

 

Here’s another. So, back to our wonderful first afternoon free and discharged, we headed home from McDonogh about 6pm. We were all exhausted but in a really good way. But oh my, if you could have seen the front of our house! A surprise to all. The McDonogh kids we later learned had heard Archer was coming to the art show as his first stop before coming home and a handful of very good friends took their lunch period earlier in the day and came to our house and hung a big white sheet, Welcome Home, Archer!, from the second floor windows of our house. And others had come and lined Archer’s ramp and our front sidewalk and entry way with melamine yellow and shiny silver helium balloons wrapped around rocks as little anchors. It was dark and it was Wow! As the motion detector lights came on and lit it all up, it was so gorgeous. Isn’t that so thoughtful. It was really really special.

 

Once inside, it was just our family. We asked Arch what he would want for his first dinner at home. Billy and I were thinking he will want steak as he has had none and not that much meat in 6 months that isn’t otherwise on a sandwhich, as that is the easiest thing for Archer to eat because someone can feed it to him pretty well. Anyway, did he say steak? Nope. He said…. French toast! Of course.
And orange juice, mango tango.
So we fired up the griddle and the house smelled like it always does on weekend mornings. Welcome home, Arch.

 

We said the grace for the meal and without a further thought, found ourselves back in our traditional ritual, asking at the end of grace, What is everyone grateful for today?
Archer began and said, Being Home. Family.
That really said it all.
As we did the go round, it was echoed, Having Archer home.
The brothers, as Dutch used to say in referring to his older brothers, feel it deeply I could tell.

 

It’s good to be home.
You are good. What would we do without you?
It’s all these interconnecting circles that connect us. I heard myself telling that to Mary Bubala who graciously came to interview Archer yesterday. It is the many circles that are at work interlocking and continuing to expand. And there are a lot of circles. Archer is blessed to have his large family as each of out five children and their different high schools have different and interconnected circles. All the sports that our children have played have spanned so many schools and there are so many on the field friendships for the kids and side line friendships for the parents, more circles. And the Moms of grade school and high school friends of each of our children, more circles. Then there’s our church circle and its many Catholic service circles within the Archdiocese and beyond with the Order of Malta. And then there are the many professional circles, our mediation circle and Enneagram circle and thousands of clients circle and those who have attended our trainings for two decades circle both domestic and abroad and the assortment of judges, attorneys, doctors, Indians, butchers, bakers and candlestick makers. All these circles have the potential to interconnect. They create a chain of very strong links that have truly given support and protection to Archer and to our family during the last 6 months. I know the next many years may be trying too, and we will make it. We all will. If we want to and ask for help. We all have troubles, don’t we?

 

And the idea of circles of people who can support and protect you, you have the same circles in case you didn’t realize it. You do. There are many people who love you. We love you. God loves you most. As a species created in his image, we were wired to interact and love each other and love together. Those many circles interconnecting and interlocking also create ripple effects. I realize as I write it’s a mixed metaphor and my seventh grade English teacher Arlette Donath, God rest her soul, would have my head for mixed metaphors, but I just see both this strong chain with so many links that extends forever, and I also see the circles that ripple out and touch other circles that are rippling out and there is movement and initiative and we are propelled to come together. We all have circles of support we can count on. And you are part of at least one circle of influence. Your circle of influence has met ours and so on and we are all better as a result. We say to each other, Have you heard? And then you make a request, like, Please say a prayer for t them, especially to Fr. Bruno for a Creative Miracle. We are better for that. Do you feel that well-being? Yes, of course you do. If you do not, pause a moment longer and breathe in well-being. It’s always there. We thank you for sharing your circles of influence. The ripple effect. We know many many people are praying. And we need those prayers. Please do not stop praying for Archer and his body and his mental health and his spiritual health. He needs your prayers more than ever. Just wait to see what those prayers are about to do next! Anyway, you can catch Mary’s piece on Monday or Tuesday this week on www.wjz.com . She said to just type in Archer Senft once you log onto the site.

 

Oh, speaking of circles of support and thinking of another amazing way people have helped us raise money as we working on getting a van, my Theta sorority sisters from UVA held a luncheon and organized a band party in Richmond, Virginia the weekend before Archer came home.

 

UVA friendships have been very special to us. Billy and I loved our days there and all the people we had so many good times with. 35 plus years later, the fundraiser luncheon had an elegant warmth-like spirit as 80 of my sorority sisters drove or flew in from at least 17 states for our gathering. It was incredible. After almost two hours of catching up and mingling and hugging and laughing and reconnecting, we had a beautiful blessing as we locked arms and sang. It is so old fashioned and so enduring, so connecting and so moving to sing together, especially when it is from memory and from the heart. Isnt that true? It’s fine and good and wonderful to sing reading from a page of music or words, but it is different when you know the words and the sound by heart. It was like that. I just could not believe so many amazing women for one young quadriplegic boy. Love.

 

I felt so incredibly blessed how it just happened to be that I had the good fortune of meeting and loving so many wonderful women at UVA, and felt as close to those who were fourth year when I was a first year pledge as I did with my own dear friends in my pledge class. One dear and amazing friend, we like to call her our social chair for a lifetime, would be the instigator to gather the older than I Thetas annually over the years in DC or Richmond and she always included me. Lucky me. And I would go as often as I could. So, I had the good fortune over the years post graduation of not only having the best of friendships with my own class and surrounding classes while we were there together in school, but I had the great fortune of connecting with those Theta women years ahead of me at UVA. Thanks to my own sister, I also have had the great fortune of connecting with Theta women much younger than I since my sister also attended UVA and pledged Theta after I had graduated. So there we were gathered together in Richmond. Clear back to 1976, the first class of women in sororities at UVA, we had Thetas from 12 class years there. I love every single one of those smart, lovely, impressive, spunky, kind and generous women. And many of them had married other boys who were also at UVA with us and were there at the band party too, and then of course Billy’s Zete fraternity brothers also came, and so it was a love and gratitude fest with about 150-200 UVA alums there.

 

They asked me to speak, and as I looked out in that crowd and into all those faces, I knew every single one, and I felt so incredibly connected. I felt the room expand with the love that filled it. They came from far places, giving of their time and resources to do so, and we were all connected. We were united. Very united. And I feel it is part of the Creative Miracle.

 

There were moments where we were truly transported as the band too were dear friends, Spiedel, Goodrich and Googin. I harkened back to the many wee hour nights when we’d be strumming a guitar on a roof top of our cinder block house, our “castle” as we fondly called it, still sipping and singing into the dawn. They really were such good days. Now, 33 years later for me and 40 years later for others, we were all together for the first time, all of us. It was an incredible homecoming. To think that they did this for Archer had it’s moments of being overwhelming. So much care and attention to detail went into the planning and the silent auction they had as well. Stephen Colbert sent Archer a photo again, but this time holding his homemade Archer Strong sign. It’s funny and classic Stephen. But what warmed my soul the most were the connections made that will continue for all those who came. The silent auction for instance will bring new memories for the Thetas who bought time together at amazing beach, NYC and ski residences all donated to support Archer. Isn’t that a wonderful thought? They will be together again as a result of being together now.

 

And we danced. I was just struck really deeply at dancing. Billy and I both love to dance. Now, it’s a rare day we get a chance to and it’s been a long time, but I felt like dancing and dancing we did. It’s the very thing Archer cannot do but I did it for him. I wondered if he would like to dance as much as his Dad and I do. Surely he will be able to someday. Surely. It just feels so good to dance and allow the body to move and feel the rhythm. I so want that for Archer. We danced and sang Rocky Top and all kinds of great songs and one of our dear Theta sistas did a cameo of Amazing Grace. That was a topper for me as we all sang it. You know, as I think about singing too, being with a live band and singing together is such a different experience than just watching a band perform. You know what I am talking about. Dancing together is so connecting. But singing together to songs we loved from our youth and songs that are enduring for our lives is very healing. It creates good energy for the world. It certainly filled my heart and I realized I was taking my own FFT from Richmond back to Baltimore with me for Archer and our family.

 

Being together like we were makes us all stronger because we are strengthened by being united. Every time we gather in song, in prayer, for a fundraiser, whatever it is, it’s about being united. God wants all of us, with faith and without, Christian and Jew and other traditions, to be united. What is more miraculous than the kind of love and generosity that compels us to stretch for someone else when we are united. Right? Well, you all stretched a lot for us, and Archer is truly the beneficiary. Our family is as well. We are so blessed. We all are blessed. As much as we feel the embrace of your love, please feel how much we love you.

 

So…please join me in thanksgiving for bringing Archer home. It’s been a crazy week and we have felt your prayers. We always do. We could not do this journey without your ongoing prayers. We know we have never been alone. If you are so moved, please join me in thanksgiving thanking God for his mercy, Jesus his son for his forgiveness, Fr. Bruno Lanteri for his intercessions, and to the blessed mother Mary for always wrapping her arms around Archer and around us. She is the best mother I know.

 

Hail Mary, full of grace, the Lord is with thee.
Blessed are you among women and blessed is the fruit of thy womb, Jesus.
Holy Mary, mother of God, pray for us sinners.
Now, and at the hour of our death. amen.

 

Have a wonderful day off if you have that tomorrow! Happy Valentine’s Day. Always new beginnings. Always grateful.
Archer Strong!
With gratitude,

 

Amen.

 

Sending love.

 

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Friday, January 29, 2016

 

Archer Senft
Family & Friends Update
Thursday, 1-28-16, DAY 178

 

It is hard to believe we are approaching six months of living in hospitals. Just hard to believe, but there it is.

 

The best news ever: Archer Sent is successfully breathing off the vent! Yes, he truly is. As of today, 24 hours. Drum roll, party blowers and shouts of hooray!

 

He will still need his trach for the ongoing percussion treatment and inexsufflator but much less required suctionings. That said, he is breathing without the ventilator on his own. On his own.

 

It’s been quite a ride the last two weeks as he built up to 8 hours during the day and then all day from the time he was Hoyer lifted into his power chair until nighttime when he was lifted by the crane like machine back into his bed. And that was the big turning point. Pretty exciting! It was and is a moment to celebrate! What we have all been praying and breathing for! Your breath, your praying and your paying attention to your breath, and your intentionality of breathing for Archer that I know so many of you have offered up on your walks, your runs, and in the course of your days, and then sending those thoughts and intentions to Archer, well, that spirit of unity made this possible. How else? They said it wouldn’t happen, or if so, not for another approximately 8 months from November. In essence, we all breathed Archer’s breaths for him purposefully together, and new life was given to him. In the way our Creator made us, breathing life into us. I had this amazing feeling, a true new experience myself.

 

I recalled how as a little girl attending a parochial school in Springfield, Illinois, which is what we called Catholic schools run by nuns, and learning that God lived in me, lives in all of us. I was always mystified by that, but I liked that fact. It made me feel special and, as it turns out in many many ways, receiving that knowledge has served my body well over the years as for some little girl reason, I knew I had to take care of my body, literally, because God lived in me. It was a young child’s way of trying to understand a mystery, but I saw and felt at a very visceral level, now as an adult, as a mother, what this means. We all activated that Holy Spirit that lives in each of our hearts and unified, we all fostered, assisted, and supported the work of the Holy Spirit in Archer. An earlier belief that the prolonged production of mucous was because miraculous things are webbing in his body and he will be stronger now.
Indeed, his lung x-rays are clear. The medically unexplained debris in his lungs is gone.

 

We are meant to be united in purpose, and when we are, we can move mountains together as the saying goes, but there are studies that I have always been drawn to over the years about unified breath work and unified prayer. One of my favorites that I followed in the 1990’s was the work of scientist Dr. Emoto and what have been now called the Emoto Water Experiments, where people gathered together on the edge of putrid lake in Japan, holding hands and saying positive words and praying together literally changed the structure of the water itself. The crystalline structure of the molecules changed. See www.highexistence.com/water-experiment.

 

Like Holy Water. Like for me, Lourdes, France, where I have so very much loved to go over the years with the Order of Malta, even needed to go frankly for my own soul. Lourdes is a place of healing, where the virgin Mother Mary appeared to a little poor girl, Bernadette, over 150 years ago, and told her to pray and bring people to the then rocky, filthy, swine outpost part of the village, which as it turned out has below it pure running waters. It is a medical mystery to this day why and how the waters in Lourdes remain pure and so many people are healed miraculously and so many are strengthened just being there. But we know why. It’s another one of God’s miracles. I have an additional reason why. The ongoing prayer all around and throughout Lourdes keeps those aquifers and water pure. That is the miracle. God gives us this place and Mary beckons us there so we can be unified. And we drink that miracle and bathe in that miracle. And we are unified. We received bottles and bottles of Lourdes water for Archer as well as water I cherish, absolutely cherished, that you sent including from Ephesus, Mary’s home after Jesus died in Turkey. I have dabbed those waters on Archer since August 6th the day after, and even gently dabbed his parched lips and listless body in the ICU when he wasn’t to have any food or drink. And I have dabbed his toes and his hands and his fingers. It is healing water because of its origin, but because of you, the believers who are the protectors of its pure true nature. I believe that Archer Senft will walk someday. Until then, as I think of it now, gosh, maybe someday I could take Archer to Lourdes, for healing. I would cherish the day.

 

So, you see, you are part of the Creative Miracle. We all are. And it will continue to manifest as we continue to believe and breathe and pray, and live with appreciation for the mystery and the simplicity of what we have, with love and gratitude. All of Archer’s injury and wounding and ordeals have meaning. Look at what small children have done for him alone. Their sweet young voices and cards and drawings and projects. And Archer’s friends, and their love and their initiative to assist him and create things that are beautiful, created with love and intention to benefit his ongoing needs. It’s all part of the Creative Miracle.

 

Thank you.

 

So, breathing on his own now, Archer is very happy. We see the Archer we know, very alive, instructing me how to do technical things for him on his ipad or backup systems or restoring data etc. Letting me know he wants the homemade chipped beef I made for him, and that if I couldn’t get toast, he’d rather wait until I did! He said it’s better to wait until it’s just right. Which in the blizzard weekend, I happened to find a toaster in a food restaurant over at JHH which for me was a fun excursion. But much more that those things, I’d say he is deeply happy, on the interior. His main goal, to breathe off the vent has been realized. And he is deeply grateful. It is not a stand up and beat his chest, Look at me! I did it! kind of thing at all. It is a quiet and very deeply felt gratitude, Thank you. To God, to each of you. To effort, to time. Thank you from the bottom of our hearts, with deep appreciation.

 

Archer’s breathing off the vent…..So here is how it all happened since the last posting.

 

We were on track for Archer to be off the vent for 2 hours the first day, and if that went well, then 4 hours the next, and if that went well, then 8 hours the next, and if that went well, then all day until bedtime. When I last wrote you, he had successfully gone off for one hour and then we were entering the sprint schedule. He was so ready. He didn’t miss a beat. He shortened the hoped for span of four days into three when his 8 hour day spilled into an all day because he was doing so well. He was truly sprinting. Leaping. It will remain a vivid memory for me that day in his hospital room in his power chair with the ventilator removed from his trach, the hole in his neck, exposed to the air: his pulmonologist by his side returning to check on him, and the KKI staff gathered round looking on. Almost like an old Norman Rockwell scene, capturing the awe but with a certain amount of anxiety of the onlookers. After quietly studying him for a while, his pulmonologist said quite simply, Arch, looks like you are doing great, want me to cap you until you go to bed? The answer was easy. Yes.

 

It was the entire buzz at KKI and they couldn’t believe it. Going so quickly to capping is not what they do. But it is what we did. It is very exciting. They watched on and I believe were and are as excited as we were and are. All good. You know, as I reflect on it now, that moment unto itself was also huge for us on this journey. Not only that Archer was doing so well with many witnesses, but that we were united in happiness and amazement at Archer and what he was doing. KKI doctors, medical staff and we, who have sparred and had very different worldviews, were there gathered together enjoying the moment. It was now: No barriers. No hassle. We see and now believe.

 

I should share with you that there was one hiccup in the first five days of the weaning process when he went off the vent during the day. For some reason, by the end of the time period set for the day, Archer’s voice would get very thin. So thin in fact that he would open his mouth to speak and there would be no voice at all. Why was this? Well, when a trach is cut and inserted into the throat, it essentially takes the place of the nose and the mouth for breathing. When you and I breathe, in through our noses and often out through our mouths, our bodies naturally heat/humidify the captured air in the breath process itself. You know, that warmness when you breathe out, especially noticeable on a cold winter day. Like over the weekend when we all had to shovel ourselves out! Oh my gosh, that reminds me of what I want to share. I’ll get back to that topic of shoveling….

 

Well, when Arch was breathing on the ventilator, attached to the trach, they added a second tube, which was warm humidified air. Since his air was not circulating in the natural way, in through the nose and out through the mouth, but was being forced with pressure support into his lungs through the ventilator, he could not naturally humidify the air on his own. (As an aside, Billy’s observation of Archer regarding the pressure support of the vent was also very insightful it seemed and it was that we needed to get rid of that too. The idea that it would help Archer at night, the bumped up support to 10 did not. It forced the air down into the lungs in a way that seemed to hold Archer back. I know that sounds crazy but I think Billy was right. We have studied Archer very very closely. He was ready to leap and the medical decisions for how to support a child’s respiratory needs, or the pace of strengthening the lungs, was not appropriate for Archer. All good and appropriate I am sure for a young child, but not for a physically grown young man.) You might also remember with me for a brief moment now when Archer went from a cuffed trach to a cuff less trach. You might remember the cuffed trach, the variety that gave him so much trouble when it was removed and we had to change it the first few times, because it had a balloon on the end. That balloon had served him well but oh how it had caused him great physical suffering when it was first removed, and for that reason and others unknown, Archer was not quite mentally ready for coffles back then. Gosh, what a hallmark it is now that we just easily remove the trach weekly. And it’s not done on KKI time on Tuesdays. It’s scheduled when we are together or other family members are able to come and get experience as well. It’s so different now. Archer has come so far. Anyway, when the balloon cuff was inflated, it would not allow any air to pass through the trach and thus Archer had no wind for his voice box and was left to mouth his sentences. Right? Remember he only began talking very softly in the last days at Shepherd as we removed some air from the cuff in the second little balloon that hung from his neck on a thin tube. The learning now was that with the balloon cuff, he had not needed extra support with the humidifier, at least not at Shepherd.

 

Immediately upon arrival, KKI had him hooked up to a humidifier from the get go. It was a different approach. Once he graduated to a cuff less trach, Archer was able to speak all the time. But what we suspected now was that he had air leaking out from the coffles trach since the seal was no longer tight as it was with the balloon. This is normal, but our concern about Archer’s voice box just fading out, it was thought might be related to the leakiness. Like it had run out of gas. Like thin air. Literally.

 

So if there was not enough air being captured in the natural breath process because all of his breathing was still through the hole in his neck, we jumped to capping.

 

So, what is capping? Capping is a small white cap, like on the end of litre of soda, that is placed onto the opening of the trach, which stops the air from entering the trach and thus forces Archer to breathe through his nose and mouth. Wow! For the first time in almost six months, Archer was breathing now as you and I do! And he did it seamlessly. That was another big day that then began a new sequence of weaning steps, 2 hours during the day, then 4 the next day, then 8 the day after and then all day until bed. All the while being fairly closely watched, our sweet pulmonologist checking on him in person, exactly what we had wanted all along and exactly what was needed for this positive and fast movement, with care.

 

So, after another 5 days of building up time off the vent at night, starting with 2 hours, and then to 4, and then to 8 and so on, in place of the ventilator’s humidifier, KKI gave us a mask like cup to place over Archer’s trach at night to give him what it seemed he needed: humidified air, essentially capturing his own breath off the trach. It reminded me of a goalie cup, a/k/a jock cup, but clear plastic rather than white. This interesting invention was intended to give him humidified air via his own breath but his own breath at that time was still through the trach. Are you with me? It’s a bit complicated in its many steps but when Archer breathed for the first time off the vent, it was still through the trach, not through his own nose and mouth. He had yet to do that until we started capping him. Well, we were in the breathing off the vent but not yet capped part of the journey, and Archer did not take to that cup like thing placed around his neck at night at all, not at all. His objection was mainly the way the hard plastic cup was attached to his throat. It seemed almost makeshift, on a piece of thin tight elastic that went over his head and around his neck to hold the plastic cup placed over the trach in place. It reminded me of those paper birthday party hats we would wear as children that would affix to our heads because of a tight thin elastic band under the chin to hold it on. No, sir. Arch did not like this set up at all for his much needed rest time. Who would? Remember that feeling? Cute… for about 30 seconds and then you wanted to tear the thing off because the elastic bit into your skin. Right? So, after two tries at night, including attempts to buffer it around the white towel, the one he always requests be wrapped around his head Sheik style every night to absorb his sweating, he said No. So, that was that. We disbanded it, literally. Arch said he didn’t need it anyway. So, we then went to capping as a way to capture the humidified air naturally occurring in the body.

 

That is why we went so fast. Isn’t that amazing. Leave it up to Arch. He wasn’t messing around anymore. Perhaps Shepherd would have jumped to the capping this quickly too as part of standard operating procedure, we do not know, but it was the right pace, fast, for Archer last week. I mean, he was so very ready. He was capped and it was all about finishing the sprint at that point. He was on a roll.

 

So, the next step, since we were still using the vent at night, albeit with PEEP at 5 and PSV at 5 then at 0–so we did get rid of he pressure support early on and that was exactly what Archer needed and was ready for–was to extend the capping into the night. This would capture the air but was a new way, indeed the real way, of breathing that Archer would have to adjust to. Exhilarating but he has not used his nose or mouth to breathe for 5 months. It began with the usual weaning schedule, two hours the first night, with staff uncapping him and putting him back on the vent at midnight, and then four hours the next and so on. The capping time was increased gradually watching him closely at night, and then we dropped the vent at night entirely just a few nights ago. That is how our blizzard weekend was spent at KKI! Amazing. Really amazing. He has as of last night, been off the vent 24/7. And he is doing great.

 

I have so felt the respite that comes from just resting in the presence of Jesus. Yes, these last two weeks have been another crushing time of intensity with Archer and all the many decisions that have to do with preparing for our soon and long awaited discharge and negotiating the right discharge day as Billy and I are firmly resolved that now that Archer is breathing on his own, we want two weeks of solid therapy that he can participate in fully, to ensure no hiccups and no yo-yoing back to the emergency room.

 

You can’t believe the mindset that frequent trips to the ER are just a way of life and expected. No, that is not what we want for Archer. If it had to be that way, we would adjust. But it doesn’t. It really doesn’t. How folly is it to discharge when someone is fragile just because they made a great stride. The body needs support. The way I saw it was Archer is now, today, this very day, at the exact place Shepherd had anticipated he would be, after what they had predicted would be a couple days in their ICU to adjust from the trip, and then five days of weaning off the vent and into hard core rehab, typically, that would have meant another 3-5 weeks from that time as I learned, extended when and if the body shows improvement. While I would never discount or say Archer has not had good therapy since September, indeed, it’s the need for both that got him to this point, the other view I hold is that he is now just starting the way he could have been starting had it not been for the many complications from drowning in the ocean salt water. So, I have firmly wanted Archer to have the experience of rehab all in for two weeks. That places us at February 5. And I want for him and for us, some back-to-back TLOA’s preferably including an overnight, but they won’t allow that. But they do agree that back-to-back practice, to see and ensure there are no glaring problems, at least for now, is wise. And if there are, we shall return.

 

Both February 5 and February 8 are good dates. The 5th marks six months. Six months of Archer living in a hospital. That is a long time. February 8 is the day my father died. Dodo. He will be with Archer closely on his journey out of KKI.

 

And all the practical stuff like stressing over transportation, the purchase of a van, but one that KKI insists we wait on until we have the actual chair Archer will be in which takes months, but his loaner is available as of today, so that will be exciting to see how he does in it and to get the actual measurements. The rat race and waiting game for and praying that Archer will move up on the list for the Model Waiver. He is now number 4 in the state. It is our only recourse for home health nursing. We are asking BCBS to provide services if there is a gap but they will not allow us to make that request until one week before discharge. Can you believe that? Needles and pins for essential needs. But, since he is off the vent, we are caught betwixt and between. It’s true. Had we gone home on the ventilator, we would have a stronger case for needing nursing care. But now, it is weaker. Cruel reality of our health care system.

 

We have to prove he needs care: trach care, pulmonary, percussion vest, inexsufflator, suctioning, supra pub catheter care, feeding tube care (But by the time I send this to you, we will probably have had it removed in another surgery I actually have scheduled for tomorrow since we only use it for hydration. But you see, these are all decisions we have to weigh so carefully. What if, when we go home, Archer gets sick, a cold let’s say this winter. Well, to have the tube to flush in water and anything else to hydrate him may be critical as Archer’s breathing and keeping the lungs clear have a lot to do with water he drinks. Over 3000ml a day! Yes, he has to power down over 12 glasses of water a day to take in enough for his lungs to stay clear. And he still needs to be percussed a few times each day (where a vest is put on that shakes up his ribs/lungs/chest to dislodge any mucous build up in the lungs) and he definitely relies on the amazing inexsufflator daily to clear his lungs and still needs to be suctioned a couple times, some days more than others. But mostly, he needs to be weight shifted every 30 minutes in his power chair, which he does on his own, but every 2-4 hours when he is in his bed. It takes more than one person to lift or move Arch. He is after all, a long young man.

 

And his poor shoulders were racked with pain the night before last related to the three techs, one of whom is a very large strong man, lifting Archer up out of his power chair onto the x-ray table at JHH Peds because they don’t have a Hoyer lift, not even a manual one. That lifting alone around his waist and jostling him, dumping him with a jolt because he is so gangly, on the x-ray table cost him dearly in pain. We need nursing help. So, it has been many hours these last couple weeks trying to understand a new system and how to navigate it.

 

And then there is his bed. All these things have to be run through insurance, some are rejected, others accepted. Do we advocate for the bed that helps to weight shift him and also percuss him? It’s a major hospital bed. It costs $59,000. Yes it’s true. Then the mattress that he has been one, or one similar to it that we can purchase as individuals, that is air, with the blower and which is essential to him for preventing bed sores because of it’s climate control is $15,000 and so on and so on. And I have to do the research and the calling and the choosing and there are a bunch of products out there. And some people are hard sellers, rarely asking any questions about Archer, just launching in about what they have for quads and paraplegics and I listen and when they get to the remote control for the easy use of the patient and the easy to grab hand rails etc, and that their beds can also come queen size for extra comfort etc, I begin to tune out because they really are just giving me their regular spiel. They just plugged in quadriplegic in the first sentence because that is all they saw on the message or heard, but they really don’t know quadriplegics. So, it just takes more time. More time. There are those gems of people out there though who are kind and want to help me make the best choice. Our ceiling Hoyer lift guy is like that and a bed company in Roanoke Virginia is like that. I love that Roanoke. My dad’s family was from Roanoke. Webster Brick. Anyway, that company’s bed doesn’t have the bells and whistles but is built to look not like a hospital bed. So, Archer is quite cheery about it all, and says, Ma, whatever you decide will be fine.

 

But these are big expensive decisions. I now have a good partner at KKI, my case manager who really gets it now. She can whip together a letter of medical necessity and get what we will need and she and I stay in daily contact, time. And when insurance rejects, she and I and sometimes OT/PT have to put together the appeal. My job is to stay on top of all this and help coordinate so it gets done but with the right pieces of equipment. And then to figure out the payment for what is not covered, or what company has what we need but that company won’t be approved by BCBS. Or that company is not approved, but could be approved and run the order through our chosen Durable Medical Equipment distributor rep, but that process can take months, with no guarantees and we are now well aware of once paid, very hard to get reimbursed. And on it goes, the days.

 

So I have needed to rely on the quietude that resting in the presence of our Lord brings me to continue juggling it all. I know I will be given what I need. And I remind myself of what I do not need. And I have had the most wonderful realization, even when I am tired, that I do not need to be anxious, about anything. It will unfold. It is unfolding, it has been unfolding and it will be just as it’s supposed to be.

 

I say that to myself too, because in the middle of all this, since I last wrote to you, I came face to face with the sale of my building.

 

Yes. I sold it. It was a really low time for me the days leading up. I was so sad. Deeply sad to let go of that building. I know we had to. Billy convinced me of that. Feeling forced to sell. It was a rotten thing. We couldn’t figure out a way not to, given what we face. I prayed about it a lot. Asking for guidance that it was the right thing. Asking for strength to just suck it up and move on. Asking for peace that it is perhaps a good thing. The latter did not ring true, at least for now. Maybe later.

 

But I said, it is just a building. Yes, my business was there for over two decades, yes there is a patina in the rooms of a type of spirit that is like true transformation, transformative things have happened in those rooms over and over and over again. People’s lives were changes. Made better. Again like intentions and breath work and prayer, my mediation conference rooms have history and legacy as if they could speak. Yes, the building has very good karma and will be an asset to the purchasers.

 

But I felt a pang of, what was it? It was like jealousy. Ugh, I do not like that word. It is so possessive. It is not an emotion I am even that familiar with. But it was kind of like that. That they could have my building and I could not. And then, after really wrestling with this alongside my desire to not be a barrier for others’ good intentions, like the reason I let my neighbor take down the large Linden tree, I wanted a transaction that was good. Good for everyone. Learning what the new purchasers intended for my building was very important in my decision making. I want good things for my neighbors and the neighborhood I so dearly love, and the merchants who are my good friends. I wanted something good for the residents so they would not have to battle the invasion of new parked cars. I wanted something good for Roland Park. And I wanted something good for my own tenants and for Dano who lives on the third floor. I think the buyers, or at least what they told me, will do something good. They are the right buyers. And we have a bit of a relationship with them through The Maryland Lacrosse Club that Billy has been involved with from the get go, lacrosse and our children. That is good. And that we could stay and rent back through April 15, and my tenants and Dano would not have to feel too much pressure to move, and we could find something good for Dano. And the buyers agreed. And that was good. This kind of thinking helped to ground me and I felt a shift in the constriction I felt in my chest and my sadness seemed to lighten up a bit too. I felt a bit of relief and more open, more open to life as it is. My life cannot have a building now, I get that. So, it must be that I do not need a building now.

 

Billy has been busy finding another location for me, for the team. I so appreciate that. It’s small, but I think it’s a good location. It will be odd to not own the space, but we will be OK. And we will build ORANS and the Being Relational movement. We have so many ideas for Being Relational and the curricula and materials and workshops and podcasts and a Ted Talk and corporate and political impact and other dreams and things we had in the works that we have had to set aside, for a time. But they will have a life, with your help, in time. So we are moving to Union Mill, down near Meadow Mill, in Baltimore, to a space that has a wonderful courtyard and training rooms. And there is a cute little restaurant there. And it is poised for growth as we see it, across from the old abandoned huge Pepsi acreage. We will have many gatherings I hope. Book readings and workshops. Please come when we send out invites. We will need support in this new venture.

 

There will also be more mediations, more transformative conversations for couples, families and business partners. And we will create a new energy in the new rooms. And I have some law firms who have offered me space for mediations as well which is very generous. I suspect some of my new work will involve more all day mediations with many people involved once I finish with the matter I have worked on since Archer’s accident. I will tell you about it once it is resolved, later on that, but quite another side-by-side journey.

 

I don’t know what the next chapter holds, but I know it holds something new. I will have to have faith that that something new will be good and will unfold. God takes care of Archer, and he takes care of me. He takes care of my family. Like he takes care of you too, right? You don’t doubt that do you? Of course not. It’s just our egos and fear that cloud that sometimes. It’s just part of our humanity. We get what we need to continue living and living with joy even when faced with adversity. That is the message I always get when I allow myself to rest in Jesus’ presence. It’s the when I allow myself part that is always the tricky part. Same for you? Anyway, I wanted to let you know about my building.

 

We had an offer back in December or whenever that day was when I went to Eddies a bit welled up, so much so that I couldn’t even remember our account number nor did I take my pocketbook with me. The purchase offer had come in three days from the listing date, and was for the asking price. Yes, I know we underpriced it. Yes, I know it’s a deal for them, but I wanted it to be a blessing. Billy has impressed on me over the years how important it is not to squeeze every last dollar out of a deal or a person, especially when you know you could. That is part of being kind, and how we use our own power or how we choose not to use the power we have if it would cause harm or press a self advantage to the detriment of the other. Remember that song in the show Mary Poppins: It’s a Jolly Holiday? I always loved that song when I was a little girl, and how Mary and Bert were such good friends, and I remember so clearly the lines I love the most. Remember, how Bert, the chimney sweep, was singing to his dear society and cultured friend, Mary Poppins, about how being with her made his heart start beating like a big brass band? And she responded to her dear friend Bert,
You’d never thinking of pressing your advantage
Forbearance is the hallmark of your creed.

 

I always loved that. I didn’t fully know what it meant when I was six and 8 and 10 and so on every single time I watched Mary Poppins, but every single time I heard their duet, I resonated with it and knew it was good. I liked the word forbearance. And honestly as I think about it in this moment, it probably defined at that tender age the kind of friendship and man I wanted to be partnered with. You know I think many people, not all, but many of us, choose our mates from a profile we have unconsciously been developing over the years or that we were imprinted with at a young age. Do you think you did? Or if you did, that those characteristics if the match was good, were the ones that carried you through rough patches? It’s interesting to ponder.
Gosh, so much to think about and how as parents we are so powerful with choosing or allowing or providing media content to our children that gives them examples of solid character traits. It’s interesting to consider. We as moms can so shape in many ways whom our children choose as their mates because of views of the other they see when so young. I wonder.
Anyway, the rest of the song as I recall goes like this:
A lady needn’t fear when you are near
Your sweet gentility is crystal clear
Oh, it’s a jolly holiday with you, Bert
A jolly, jolly holiday with you.

 

Forbearance. I always loved that. Bill Senft is the epitome of that. It’s a good thing. So, our settlement closing on my building was January 14 and it couldn’t have had a cleaner settlement sheet. And I wrote a check for three months rent, and Billy helped very much with the whole process when I was in the hospital with Arch.

 

I have to believe that somehow even though it is somewhat bitter and was not what I would have ever considered doing for many years, that the bitterness is sort of like the green olives on the trees in the Tuscany hills that Archer and I picked one fall on a trip to Italy together only to learn they were so bitter, too soon to be eaten, but that once picked, could be stored well and taken care of, and, with a little age and time, would turn into delicious dark rich brown olives good enough to be eaten with any fine cheese and wine, or just on their own, in time. In time. In God’s time.

 

That makes me think of Archer before the accident. He really loves life. It’s no wonder the narcotics they tried to put him on just didn’t work for him. His issues were ones he needed to work out, face when he was ready. He has and will continue I am sure. He told me a few weeks ago around Christmas that he was ready to talk about what happened August 5. He said it just like that. I am ready to talk about it, he said.

 

I told him KKI wouldn’t allow any physician or other person in if they don’t have privileges and are already KKI employees. When I talked with KKI about this and said it didn’t make since if we needed someone and they didn’t have that specialty. They still said we would just have to wait until discharge. So, I said to Archer something like, we will have to wait until you come home before I can take you to talk with someone. He pondered that and then said, I can talk to you.

 

Ok.

 

What feels good about all this is that Archer for the most part has been clear headed and is now definitely clear headed. He wasn’t his full self when he was on antidepressants. Atlanticare in NJ gave Archer the narcotic Buspar for anxiety in the first few days when he had to learn how to breathe vent dependent. I did not fully appreciate how different and thus difficult the breathing methods were until last week. I mean, imagine, you can’t breathe, and then you can, aided by a machine, but at the machine pace not yours, and later on, through a trach and not through your nose and mouth. And the panic that your body might naturally put you in when you the vent and cuff trach effectively close off air to your nose and mouth. That is a major adjustment. Later when Archer reluctantly started the weaning process, Shepherd gave him the narcotic Lexipro to aid him in the other direction, to relax as he weaned off the vent! We knew his right diaphragm was not working at all then. We know he had 20-23 blebs in the right lung. I knew he had not yet come to terms with the drowning. These were significant holdbacks in his progress. I don’t think any amount of narcotic would have coaxed Archer through that. In fact, if anything, it numbed him and neither of us liked that.

 

I know through all the years of trauma and conflict transformation work, that if you are going to work through something, you have to come face to face with it. So, once faced, why would Archer want something so glorious and cherished as breathing naturally to be numbed with anxiety drugs? So, speaking of weaning, as of last week, Archer, with our pushing the docs to wean off, as you know, was weaned entirely off all narcotics, and, off most other drugs except probantheline and ongoing supplements. And, in that state, Archer experienced his nirvana. Successful breathing on his own. He was ready on his own time, this time. And I am, well, I am proud of him.

 

He really really did not want to be on more pain meds, and he really didn’t want to be on antidepressants. He told me and since we didn’t have any doctor support, I battled on his behalf. Maybe antidepressants served their purpose for Archer, who knows. But maybe not. It’s complicated. And there are many instances and times when people can be aided by such drugs, I guess. Who knows. What I do know is that they are overused. And I believe if we had had access to a good trauma expert from the beginning, and the facility recognized the barrier was both physical and mental, directly related to his drowning, he could have avoided those drugs altogether. I did the best I could naming where the anxiety may have been coming from and respecting his boundaries while continuing to fight for low doses and no doses. You know that part of this journey. But it is curious to me that now, without anything artificial, he was ready to talk about it, and he was ready to breathe on his own, and he is truly sprinting now off the ventilator. Whatever the truth is, and I am not sure we will ever know, what is a fact is this. It is exhilarating for Archer that he is breathing on his own, and he is clear in mind and spirit to take that in fully and celebrate very authentically.

 

So, Billy and I were just really really happy that he was doing this, breathing off the ventilator, in his way, as he wanted. Allowing his body to do what it knew how to do. Or at least giving it a chance.

 

And I believe that will be part of the secret formula from here on out for Archer’s continued success. Archer’s body, like yours and mine, has known how to breathe, how to move, how to walk. Sure, he is now paralyzed, spinal cord burst, nerves severed, complete and all that. But his body has not forgotten that it knows how to breathe, how to move, how to walk. His body knows. His cells have not forgotten. He has cellular memory. A lot of it. That memory will be awakened in his lifetime, and like breathing again, he will walk. I know it. It will be a miracle, and it may be aided by modern cutting edge medicine and technology. He will walk. And it will be miraculous.

 

So, here we are approaching six months and now, he can participate fully in rehab. No ventilator unwieldy contraptions, no constant suctionings, no regular stops for 20-30 minutes to try to get at a plug, no exhaustion like he had for so many months just trying to fight the gunk in his lungs. He is now at the place where Shepherd thought he would have been a mere two weeks max from arrival time. That would have put us at about September 11 when his next four weeks of rehab, or longer depending what came on line in the body would have been. So, essentially, as of 4 days ago, this is the place where Archer would have been admitted to an inpatient rehab facility.

 

So, how long will we stay? We are discerning that now. I want Archer to be very strong and very ready to go home and conquer the mountains he has yet to climb in his rehab. He is very close to ready. But I am quietly aware it is not quite time, but very close.

 

Archer’s situation from the beginning has been a Both kind of thing too. Goals of off the vent and Rehab. Both. It was not a one or the other. It was not correct to tell him he had to choose. They were both essential for his recovery, together, at the same time. Archer would not be breathing on his own without the benefit of six hours a day of physical rehab, even if he was like a sack of potatoes, exhausted for months encumbered by all the ventilator box, motor, tubing. The rehab built back the inner costal muscles that support his lungs and strengthen the diaphragm. And he may have never entered rehab robustly in this first year had he been discharged home in early October or to a long term acute care facility where he might still be in a bed all day, as an unweanable quad. Imagine if we had gone to such a facility, or just gone home back then for that matter. Weakened, in bed, not able to talk, not able to breathe on his own, feeding tube, etc. It was not his path.

 

Don’t you have times in your life when you look back and see your path? It may not have been so clear when you journeyed down it at the time, but you know as you look back that it was the right path. Those are very satisfying feelings. Or perhaps you look back and wonder if it were the right path. I think we all have those things usually big things that we can say are the right path. Maybe it’s the family you were born into, or your choice of schools to attend, or your choice of partner, or your choice of where to live, or your choice of job or career path in the home or outside the home. Your path. Do you have a moment when you knew you were on your path? Home or not at home.

 

Archer is on his path. It’s a good path. I told him that just last week. I said, Arch, you have a good life.
He nodded.
I said, right now, a good life.
He nodded again.
I continued, And you are going to have a good future.
He nodded again.
Then he said, Yep. All true, all true.

 

It’s a wonder and so wonderful.

 

Let’s all pause. Just pause. Paaaauuuusssse. Did you notice how your shoulders dropped because your breath was fuller? It’s so natural. Maybe you sighed or heard yourself exhale. When we can breathe more freely, with ease, our entire body can relax, and it does, automatically. Don’t you just love the feeling when your body is relaxed? It’s another high form of medicine: to pause, and breathe. Pause……and breathe. And whenever we are upset or uptight or whatever it is that has our emotions stirred up, all we have to do is pause…. And breathe. If we can remember.

 

And Archer is doing that on his own. On his own. Yes, defying what was predicted. But we knew he would. With God’s grace. Breathing on his own. It may not have come so early; it may not have come so late. All of that is in our human measurement of time. So, this experience with Arch is making me realize how much I desire to live in God’s time. And to have the discernment about the right amount of effort. My efforts ignited by and tempered by the Holy Spirit. With mother Mary’s arms around him, around us both, around our family, around all of us together, and with the intercession of the saints and Fr. Bruno Lanteri. And all the believers. To live in life as it is and find it beautiful and miraculous. Saints, all those people who died.

 

You know, it occurs to me that you may have prayed to those you love who have died. I know I have. To my dad, Dodo. I know from an experience Archer and I had together in Italy that Dodo is very much with him, right by his side. That was an interesting story that maybe I’ll tell you sometime if you happen to believe in such things. I will just tell you that someone in Italy who had spiritual vision told both Archer and me a couple things, for me that I was surrounded by many angels, all the time, so many it was hard to count, and for Archer that there were a few angels right by his side and one in particular, maybe a grandfather she asked? She said he was saying his name to Archer. She couldn’t quite make it out but it sounded like two syllables and had two O’s. Archer and I knew right away it was Dodo. We smiled. A bit freaky for a little boy but also very comforting. It was all in the context of love and she was a seer. Kind and loving. Able to tap a different dimension. Some people have that gift.

 

How is everyone doing in these days after the blizzard? I hope ok.

 

As it approached, I had a flight for mediation down south. Before I left, I knew that it was not really an option for me to get stuck someplace else. Being away from Archer for a day or two or three is a lot and as much I would have loved to get stuck in Atlanta and then call one of the Arch Angels and spend the night or a couple days with a dear friend while the snow piled up at home, it just is no longer an option. At least for now. So, with some fancy rescheduling, I was able to get a flight out, but it wasn’t direct. OK, I would be passing through Atlanta, but I figured I would still be in enough time to beat the path of the blizzard. But the first leg of my flight was delayed and as we were about to take off, I received a text from Delta that my Atlanta to Baltimore flight was rebooked for Friday morning at 6am. Hmm. Why was that I wondered. And we took off. When I landed, I had another text waiting that said my flight was then rebooked with a new boarding pass etc for Friday at 9:25am. That made me a little nervous as the storm then was to hit Baltimore around noon. As I exited the plane, I found a Delta guy and asked him about the flight. We went to his computer, he asked me the flight number, and punched it in and the monitor came back saying it was delayed from 10:10pm to 10:18pm but still on. I said, really? It’s still going out, flight 1924? Are you sure? He said yes. I said, What terminal am I in? As I looked around and realized the Atlanta airport was already chaotic, more than usual for sure, with people scurrying everywhere likely trying to get someplace as I before the storm delayed them.
He said, D.
I said, Where terminal is the flight?
He said, A.
I looked at my watch. It was 9:48pm.
I flew through the corridor of the world’s largest airport seeking the train as fast I could, into the main commercial area of D, past the shops and down the forever long and steep escalator, like the ones in Washington DC that take you out of the metro that seem interminable. I raced onto the train as the doors opened, found my spot and watched the stops until we arrived at A. I raced off and up another long escalator into A, figured out in what direction Gate 26 was and took off. As I approached, I could see a throng of people. I mean a huge group of people clustered and getting more tightly packed at Gate 26. Good Lord, why so many people? They were readying to board, indeed, the process had already begun as they were on priority. I knew I had my electronic boarding pass to the original flight. I wove my way through the people and went to the desk, that oddly had no line, and asked if she could check my ticket. I fumbled to find and open the text I had from earlier in the day when my office checked me in. She took my phone with my ticket, placed it on the scanner to read. It beeped rejection. We both looked at it and I was Priority that by this time had already boarded. My seat was 1D. How in the world I was in at Priority in first class I will never know. I never fly first class. She said, Oh, Mrs. Senft, I am not sure why your seat is no longer available. Please stand by and I will reseat you but I am sorry it will not be in first class.
I replied, That’s perfectly fine. I will be just happy to be on board.
And, indeed, she produced a paper ticket for me in Row 35.
It was a huge plane, seating over 300 plus people, all headed to Baltimore. I still do not know what happened but I am so grateful because I am not sure I would have made it back before the snow with all the confusion at the Atlanta airport. It ended up not departing until after 10:40pm. I made it to Archer by 1:15am. All was well.

 

But even in the two nights I was away, stuff happens. That’s one of the learnings of this journey. If I am not there for rounds every single morning and not there to see what is going on at night, stuff, bad stuff, happens. It really does. Besides the fact that Archer’s room was a wreck with empty food containers everywhere and medical wrappings and such and respiratory supplies out opened and generally unkempt, Archer was sweating profusely with a headache, the beginning of Autonomic Dysreflexia (AD). His feet were touching the end of the bed. I called the nurses to help move him, as it takes three of us to pull him back up in his bed. He also had his shirt bunched up behind his back, so we were able to straighten that out and soon his symptoms abated. I was happy to see him.

 

The rest of the night was fairly peaceful except his monitor went off 3 times for a long time because the pulsox on his finger, again, for the zillionth time, gave false readings. Those kinds of things that punctuate the night so unnecessarily really mess up any good sleep patterns. It’s hard to get REM in the hospital. You know, as I think about it, I, who dream a lot and wake up with dreams fresh on my mind often, could not recall one single time where I could recall my dreams in… months. On those nights when Billy and I switch off, I still can wake up disoriented at home thinking I am still in the hospital pull out ,but I cannot recall that I have dreamt in a long time. Not good. We really need to help hospitals, which are supposed to be places of healing to change this. Heck, KKI is hardly an ICU. It’s a rehab hospital and the ways to do this better would be easy. For instance, they might consider doing away with the cheap disposable pulsox monitors for heart rate and purchase more durable and accurate monitors, like we had at Shepherd. They exist. We have our own I purchased and we use it at home. Granted, it’s not on all the time Archer is in bed. I just use it to gauge his heart when he is getting junky in his lungs and when we need to clean them out, or if he feels AD.

 

Oh my but that reminds me that the week before when I had to fly down south on the same matter, you won’t believe what happened. I had to rent a car due to mine needing a repair that was literally scheduled for next day after Archer’s injury that obviously just never got done. A long trip by Billy driving my car to Atlanta for me and then back again while I flew with Archer each way, the car was still fine but the repair was major on the underneath related to the car hitting something many months ago and it causing a hole in the bottom, discovered serendipitously, you know how that goes.

 

Anyway, I had just picked up the rental car, literally within a couple hours, had headed down to KKI to pick up Dewey and Dutch who were with Archer and were on our way back, one block from KKI, when Bam! While stopped at a red light, we were slammed from behind. So, this ol’ body ain’t what it used to be. I knew it spelled back issues for a few days. And so it did. I munched on ibuprophen and bulked up on my andrographis complex to boost my immunities. By the way, one of the best things in our medicine cabinet at home as recommended by our family nutritionist is andrographis complex. The children take it anytime they feel wrecked from a particularly hard lax practice or game. Or whenever any of us feels a cold coming on. Or whenever our bodies need an immunity boost. Voila! Sure enough, I knew I was hurt but it really only lasted where I was in pain about three days thanks to it. And, it’s all from the rainforest, a particular plant in the daisy family. I have been fascinated all my life with the mysteries of our world and nature and I suppose it’s part of why I think I now marvel so much at our own bodies, through the same lens of wonder, but with an adult appreciation of the life that we have with the splendor all around us. Our bodies, each body’s ability to work in the very intricate highly complex ways that it does, every second of our existence, and to rebound when it has been injured if we give it a good healing chance. God’s majesty is really everywhere. I would highly recommend andrographis complex. But I would recommend a lot of wonderful things I have been introduced to over the years with an interest in health and the body and conflict and conflict transformation. What are your secrets for what you do when you know your body is about to be compromised? Sleep…….

 

And so it was, a week later with the snowstorm. Sleep. Nope. How about that shoveling! I thought for sure I would write to you all in the snowstorm. I have had so many things on my mind to share. Billy and I had cooked up what we thought was a wonderful plan whereby we would both stay w Archer overnight, sure against the rules, no more than one, we know, but go figure where else one could go when snowed in. And we figured it would just be until Friday to Saturday. We arranged for Dutch to be with good friends and he was thrilled and all the big kids were battening down the hatches in their respective homes. We planned to bring the outdoor pets inside as we often do in the winter anyway, giving them food and water and a place to do their business in the basement etc. But then we remembered on Friday afternoon… Dano.

 

This snowstorm predicted to be big and we wanted to check on him. Turns out, he was really frightened. Many hugs and of course, bringing him to our house. So you know what they say about the best laid plans. Plan B went into effect. I stayed with Dano and the pets. Billy went to the hospital with plans to watch a lot of movies as all of Archer’s therapies were already cancelled and KKI was on short staff. For those who do not know Dano, he is Billy’s mentally retarded older brother. He came to live with us when Billy’s parents died 13 years ago, and we subsequently realized he was independent enough to have his own apartment, so we retrofitted the third floor of my office building, which was mixed use zoning, into an apartment for him. Thus, I have been able to see him every day at my office. Now, he was home again.

 

He paced a lot and was a bit agitated worried that his home would lose power. And then he became concerned we would. He watched the news reports intently listening for any outages. I think he was comforted when I explained to him how we had a generator and showed him the big box in the back yard, barely visible though as the snow accumulated. I realized that generator is a real insurance policy for a number of people in addition to Archer.

 

As the night wore on and then the next morning came, Dano was like a moth to the light pacing as to how he could get to his beloved Mt. Washington Tavern. You see, over the years, all because of lacrosse, many have loved Dano. He was the team water boy for the Chesapeake team, the Peakers, for many years, and as such, when the Mt. Washington Tavern opened by a former Peaker and good friend, Dano was there in spades, becoming a fixture over the years. I thought about this a lot the next day as I was shoveling snow for six hours! My new role since I was without all my boys who usually help with all these kinds of tasks. The Tavern is a very dear place for our family, means a whole lot. The original owners and the current, always look out for Dano. It’s very beautiful. And the connection for many of these good things stems back to sports, and lacrosse in particular.

 

Sports. Sports have been very good to our family. We love many sports. The kids have all played so many. I suppose that is the story of so many American families, certainly mainly Baltimoreans. From swimming meets to baseball, to squash, to surfing and body boarding, to basketball and soccer to cross country and futsal, to our beloved sport of lacrosse, weekends have been filled with games and tournaments for rec leagues and travel teams and school teams for the last twenty years. Many dear friendships have been made on the sidelines for us and on the fields for our children. Has it been that way for you too? Or perhaps it is other things your children are involved with, theatre, Scouts, whatever it is. But there is something very special about sports I think. Oh, my, so many special things. The camaraderie when a team comes together, when the parents and the kids just gel and click, those seasons are particularly memorable.

 

What is it that brings about those kinds of seasons? I think it’s the effort that is put into being a team. It just doesn’t happen by accident. It’s often the leadership of a particularly good and committed coach, who is kind and a good person, and not too overboard, or at least most of the coaching squad is not overboard with the competitive drive. Gosh, I have also seen teams self-implode when the coach is maniacal about winning and driving young kids, no better said, pitting young kids against each other. I would go so far as to say it is wrong. It is. It is not in the nature of human beings to want to hurt each other. It’s not. It’s not part of our hardwiring. At all.

 

I have learned a great deal about this as it relates to war and war training which some of my mediation work has lead me to understand. It takes a whole lot of repetitive training over and over and over again to override the instinct we have to care for each other. Boy, I could talk with you about that a lot if anyone is interested, but suffice it to say, we have experienced both excellent if not the best of sports experiences and some downright lousy ones. I recall for instance a particular game when Petey was in his travel team lacrosse days. We were playing a team from Bethesda and the parents were gathered in the stands. Both teams were very competent and the play was at a fairly high level for their ages. When one of the moms, yes the moms from the other team began to shout from the stands to her son’s team to “Get” #17. 17 being the jersey number of most of our children by choice, kind of a Senft number, she was of course screaming at the boys on her son’s team to stop Pete from scoring. Ok. Legit, but it began to have this fierceness to it as she continued screaming for them to get Pete. It was rattling me. Then it happened. She crossed the line. Her screaming became, Hurt #17. Get him. Make him hurt.
And then she even went to far as to scream as if foaming at the mouth, and it’s not the first time I have heard it on the sidelines, We want blood. Get #17. Get him.

 

That was it. I got up quickly, descended the stands, turned with my back to the game and looked up in the stands at all the parents from that team gathered together. Some joining her in the hurt chant, others going along with their silence, and I yelled, Hey!
I yelled really loud, Hey! All of you! Number #17 is my son.
Do you want blood? He could be your son. Is that what you say to your boys? Is that what you teach them. My son could be your son. Do not say that anymore. Ever.

 

And I went back and took my seat. The screaming abated. Probably I was their laughing stock but I didn’t care. It had to stop. It’s harmful. It’s not good for us to get so carried away with our desire to succeed and compete that we cross the line.

 

Others may disagree with me and that’s ok, but it’s a rare mother who behave this way. And it makes me sad. We have such a privilege to model the best we can be for our kids. You know, there is now a fairly good amount of emphasis on empowering girls, at least in American society and we have come a long way, of course we have a ways to go. I had a concentration in Women’s Studies at UVA out of the 1970’s and soaked up history about women and oppression and glory. All that said, I think we are a pivotal time for focusing on the quality modeling for boys and of young men. They often ironically get left behind in understanding their true nature. Having four sons, I may not be an expert on boys, but I do know boys fairly well. And they are tender and have fragile egos and are strong and resilient. Just like girls. But they are not like girls. They are different. And if I have thought how important it is to give them environments where they can learn humility and inner confidence, good manners for others born out of respect for themselves. How are boys to respect themselves if given a diet of play dirty, hurt others and do anything to prevail, when doing so really goes against human nature. More importantly, it probably perpetuates date violence and a lot of other harmful things. I know I am perhaps in a minority on these views, but maybe not. I’m curious as to your views. So, these were the kinds of things I was thinking about as I shoveled snow for six hours.

 

Yep. Six hours. And you know that little back problem from the prior week that I thought had dissipated, well it came back like a stacked deck of cards. So, you know what and I did, I went for the andrographis complex, and made sure to take a long Epsom salt bath afterwards. Yep, it worked.

 

But back to shoveling, when you were shoveling, as I know many of you were too, did you find your mind wandering? I found I really loved shoveling. I haven’t done it in years really. It was like gardening, which I love. You kind of get in a zone. And think about a lot of things.

 

So another thing I realized was literally when I began I had to have a plan on how to attack the job of snow removal. I don’t know if your house was the same, I would imagine it was at least for many in the path of this big blizzard, but by the end of Saturday and for sure by Sunday morning, we had snow accumulated generally about two and half feet but over six feet at most of the entrances of our house where there was corner because of the way the wind blew. It was gorgeous. It was also daunting.

 

I realized I tried a few methods very methodically to see which worked, before I found I was all in on the one that worked. I was busy in thought thinking, how would Billy and the boys tackle this, as they are all very mechanical and spatial. I suppose we are all special. But then I realized how important it was to be fairly precise with how I was slicing an area about 3×3 all around and then going layer by layer in that area to remove the snow. Digging down to scoop up was impossible, way way way too heavy. So I removed in layers. How did you do your shoveling? It’s funny to me because I was then joined by one of my neighbors, and he had a bit different approach. I had to laugh out loud because I was really believing my method was pretty good, it had a rhythm to it and I was making pretty good progress. But my approach was not necessarily the best approach, and certainly not the only one that worked. It was fun to roll that around in my head as I got lost in that thinking too. How often I could think I have a really good way to go about something when someone else brings something new and fresh. I love it when that happens actually, if I can just get out of the way to allow it to happen. It always takes my breath away as if it’s the greatest thing since sliced bread when I find someone has done something I do all the time but in a different way and it works just as well. Does that ever happen to you? I then thought of all the fights and conflicts that happen because of people being dead set that their way is the best way or only way. It’s understandable really. After all, what happens to us in conflict is we do shut down literally. The body goes into fight or flight and oxygen to the prefrontal cortex of the brain is constricted while the body moves to action out of primitive self-protection automatic mechanisms. And, so it’s very very true that we don’t hear each other. Again, that God given blessing of the breath. When we breathe deeply for a moment, it helps to bring the oxygen flow back to the part of our brain where judgment and analysis take place. So, I was wondering when I was shoveling how many arguments there may have been over proper ways to shovel and remove snow!

 

And then I realized that by whatever method, some kind of thought through approach is really important when a project or task is really so huge. Conflict resolution is like that. I thought about that too. I had the whole front of our house, then the sidewalks that extended across our property to our neighbors’ on either side, then a path to my car, then my car, then the decks to the house, and how I would ever get to them with the snow packed so high against the doors. But as I cleared each 3×3 space and one area lead to the next and so one, it was quite rewarding and I might add, quite hopeful. When I first began, I felt a sinking, how will I do this? And as the method was refined after some time and attempts, I found new energy and it did not feel so daunting. And that is exactly how very large conflict resolution can be as well. You need and overall strategy but you begin removing barriers to smaller more manageable things and then building from there, tweaking and returning to refine. I enjoyed my interior six hours.

 

Part of my thoughts as I cleared more snow were about Rosie. She’s one of our cats, our baby cat, although a year old now. I would thus call her a full-blown adolescent. She had wanted to go back out when I brought them in around midday on Friday and of course I let her back outside. Well, she didn’t return Friday night and we all know how much snow had already accumulated by nightfall. I called and called for her. Nothing. I was worried about her. I felt really really bad and was more worried when Saturday morning with the snow drifts up on all the doors and the white stuff blowing hard and coming down steadily, she still had not appeared. I texted Paula right away that I couldn’t find her and I that really errored in allowing her out on Friday and I was so sorry. Rosie is her cat. As I shoveled, stopping every half hour or so to call her by name, I was rolling around every which way all the possibilities for where she might be. And I was cajoling myself, self-soothing honestly about her being a very resourceful cat, and very lovable so if she was not holed up somewhere, she meowed loudly enough at someone else’s door and was inside someone else’s house. I also thought about how igloos and how the snow is actually a natural insulator and maybe she was under the house and warm enough to not freeze to death. And I also thought about how fat she was and that she had some calories to burn if she didn’t get fed for a day or two. But all this thinking was really just my way of turning it around and upside down. It was not the first kind of inner dialogue I have had over the years like that with myself. Figuring out what part of the anxious situation was my piece and what part I wouldn’t change anyway. As I was working out making peace with myself, and where I should take responsibility and what part of my coincidence was on overdrive, I realized again, certainly not the first time in parenting five teenagers, that it was just my parenting style again, for better or worse. I believe in our children having a lot of experiences, age appropriate. And teenagers, and I was likening Rosie our adolescent cat to the kids as teenagers, are capable of venturing out. I did flash in my mind if I should let her go or now. It was simply reflexive. I thought she is smart, she wants to go, she’s an outdoor cat, and I’ll listen for her at the door when she’s ready to come in. I thought about our kids, when they have wanted to try something or go somewhere. If it’s something I really feel is flat out harmful to their psyche or soul, I have said, No.

 

Like PG13 movies when they were still young, or TV generally, or paint ball, or video games full of violence. I just say, No. They know why. I tell them it’s my job to help them protect their minds. Of course, it’s not fool proof. I know that. But I believe that the more they understand and appreciate their minds and souls, the more they will make good decisions as they grow up. And they will avoid nightmares. I really believe so many kids don’t sleep well because of the amount of gaming they do and the content of the media they are bombarded with. I know many might see it differently than I and that’s ok, but I also know many especially moms would see it similarly. We just have to find our voices. So as I was shoveling I thought about how I must have been like a crazy mom to many, but we are all friends then and now and I am grateful to all the moms, whether we were on the same page or not. And then on the other hand, I usually say, Yes to life experiences. I’m fairly quick to do that. And, as a working mom, I am not a helicopter parent, never have been, whether as a working mom because I didn’t have the time to be, or an at home mom, I probably still would not be. But I know other helicopter moms and their kids are great too. So, I was thinking about Rosie and if I should have been more helicopter mom like. And I thought about our teenagers, when they wanted to go do something, or at least the times when I knew and they asked, it was almost always for me a, Yes, Go, my darling. Have fun. Learn something. Don’t be stupid. Be smart. Do well. Come back safely. My mom was always very free with what I was allowed to do. I am really grateful for her parenting style and I hope I adopted a lot of it. My grandmother was the same. Since both chiefly raised me, I know I consciously adopted much of how they parented because I wanted to. They were both honestly better than I though, as they were both less concerned with things. Like the sale of my building would not have rattled them as much I imagine. Two really great role models I had. Very lucky in that respect. Gosh, I just got an insight. Work is really important to me and my building represents that. It’s a bit a part of me. Almost synonymous with a big side of me. So, selling it has been like…like selling a part of me that wasn’t for sale.

 

Then I thought about my shoveling again. I realized my back was on fire with throbbing, and I needed to take a break. But my last thought was one I liked, and it was inspired by the man I sat next to Thursday night on my flight from KY to GA. I thought, we all have a method that chunks away parts of big problems. Otherwise, people give up. That has been my experience as a mediator, in matters small to very large. People, smart people even, give up easily. The give up by stonewalling, by walking away, by not trying. At the heart of it all is not only the effort and method to chip away that is needed but the worldview that sees the optimism in the potential of breakthrough, the potential of a change. It’s effort plus hope. And when we have efforted all we can, what we are left with is hope. And that is no small consolation. Hope is huge. I thought about how easy it is for any of us to give up, especially when the problem feels just too big or the situation is too daunting or unbearable. And I thought, What if Jesus had given up.

 

Thank you, for our humanity that God graced us with sending his son to experience the same travails we do and then the ultimate excruciating and most humiliating of all deaths, crucifixion. What if Jesus had just given up? He didn’t. His last words were, Forgive them. For they know not what they have done.

 

There are so many times when I know not what I have done. I am sure of this. I am so grateful to know I am forgiven. If there is something bothering you or tormenting your thoughts, it’s really powerful to ask for help and peace in your heart. At least it has been for me. I am sure it is the same for you. Gosh, I wish I were with you in person right now because I just feel like hugging someone. We are so blessed to have each other and to be able to forgive each other even when we have crossed each other or not done or acted as we wish we had. Begin again. It’s very powerful.

 

Oh, I’m switching gears here but I wanted to share with you a pick. Kind of funny really, because it was texted to me while I was on a break tinkling quickly in the ladies’ room to get back to the intense mediation, and it made me smile. While it’s not the greatest pic per se, I just love it regardless for what Archer was doing. One of his coaches who is by his side many hours a week, helped Archer with a lacrosse fiddle stick. You know the kind. Little, light weight, plastic, made for young children but all big kids and men I know just love them still. Archer’s PT has taped his hand so that it can stick if you will in his hand a bit since he can’t feel it, and his OT held him stable enough that he might have the experience of holding a lacrosse stick again. So while he’s not doing any of this himself (yet), it’s a beginning. I was really happy. Just the progress of Archer lifting his right arm with strong bicep strength is what is so awesome. But the best part I learned when I later face timed Arch that night is that he was using the fiddle stick to throw a small beanbag into the corn hole! That made me laugh. Archer as you know loves the game of Corn Hole, has made his own platforms, one painted with the McDonogh mascot and colors and the other with the Gilman mascot and colors, and he is a master corn holer. He gets that beanbag though the hole on more occasions that not. So, it will be fun to see what he is able to do over time as he now works on overhead strengthening.

 

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So, I was able finally to return to KKI on Sunday, as I hiked out from our house where the roads were still not cleared, to a main thoroughfare and Billy was able to meet me, having navigated on the few through streets downtown. We were some of the only cars out. I drove very very carefully. It took a few hours for our round trip car swap escapade. When I walked into Archer’s room, he was still in bed, and was in the throws of an AD episode. His blood pressure was on the rise, 154, 168, then 188 systolic. It was moving fast and his distress was high. He was sweating profusely. They were discussing giving him nitroglycerine. It looked as though his clothes had been loosened and his TEDS pressure stockings had been removed. He was lying flat and they said, Let’s wait and see.
No, I said. He needs to be out of that bed!
Now!

 

He does very well when upright.
While they had removed most of his clothing, he wasn’t getting better. They had done all they thought they could and were just watching him. No! No watching. Get him in the sling for the lift and into his power chair.
That’s what we did, and he began to stabilize. He was pretty wiped out. That was a not good one.
Once in the chair, I asked has anyone done a body scan of Arch to see how his skin is doing. After all, from my being away to the snowstorm, it had been five days.

 

I began with holding him as we leaned his body forward so I could look at his back and Oh, my God, please tells me this is Ok. What was on Archer’s back was a large lump directly on his spine in the Lumbar region. Closer inspection revealed there was another smaller one on the spine bone below. And more inspection looked as though his right shoulder was a bit swollen and his left was bruised. What in the world was this? How long does this take to happen? I went into action about wanting an analysis.

 

That lead to a lot of back and forth about how to get Archer an x-ray soon. The only way to JHH really was through the tunnel. The tunnel. OK by me. But I must say now and it wont be the last time. That tunnel is a disgrace to KKI and JHH. It has a lot of potential to be something else. But it looks like the streets of a bad side of town or like the bowels of an uncared for building. And there are a lot of employees and others who pass through each day. That is what KKI should have some of their funders do. It would be a fun and very prominent thing to do for employees. And you know what they say, if your house is in order, it means not just what can be seen but what can’t be readily seen.

 

But wait, my inspection was not over. I was going down his body and learned that not once but twice his supra pubic catheter had popped out. Why is that I asked? No one knew. Everyone said it was very unusual. And that it shouldn’t happen. They inserted a new one but felt resistance with the 16 French and so put in a 14 French. Resistance? Why?

 

I got to Archer’s feet and could see right away the cause of this AD. Many things bring on Autonomic Dysreflexia, a condition experienced almost solely by people who cannot move their bodies, and ingrown toenails are a big culprit. I felt myself move from the fear and questioning about his back, then the bafflement of the supra pub to outright anger about his toes.
Why were they not attended to? I snapped.
I have asked repeatedly for a podiatrist because you will not clip his toes. I was told I should not. The podiatrist KKI has on contract came, took a look, and said, it’s not necessary that he was called.
Bull crap on that.
Any paying attention person would know that toenails and fingernails are always important and when he has no feeling and good blood flow, I was concerned and put out that he was not. I asked again for a podiatrist but he did not come. I suppose he thought it was the family who was calling him unnecessarily. Well, Archer’s toes looked bad to me.

 

So, we went to JHH through the tunnel for the x-ray. I tried to get to see a podiatrist who was not on the KKI staff and if that didn’t work then to the JHH ER room. But these requests were met with another set of Kiki’s many rules. I have to say though that the interaction was still good between the attending doctor and me as she was both communicative and apologetic rather than shut down and righteous as had the first attending doc been. So, I asked her to explore all the options with me, including my going to the ER from the pediatric x-ray in Blumberg building, since once we were there, why not. She said if we did that, we would be considered AWOL and they would not allow us back in. While I did not want that to happen, it did cross my mind, Really? Getting to the ER in an ER situation and then being barred from reentry? In a blizzard? Where would we go? They’d have a real problem on their hands then. Had I been in the mindset to prove a point, I suppose we could have gone to the ER and I let her know that I would still consider doing it if that’s what it took to get Archer seen. She said no one was answering and then she came and told me that there was not podiatrist in the ER anyway. I didn’t need a podiatrist really. Any general surgeon would do at that point. His big toes were angry. And I knew that as soon as he was supine position again, it was going to be a bad situation, so we had the afternoon to figure it out.

 

As is turns out, we were over getting the x-ray of Archer’s back, I was talking to the accompanying RT’s (respiratory) asking what the policy was if I took Archer to the ER, would they still come, since, the policy is that an RT and a nurse or tech must always accompany Archer, even off the vent, because Archer is still reliant on his trach and still in need of all his pulmonary care, percussion, inexsofflator, suctioning etc. So, he was calling to inquire and letting them know of my intentions and low and behold, we got an appointment for the next morning at Bayview. We would have to go by ambulance, which we did, and yes, Archer had foot surgery.

 

In the interim, we did 4 Epson foot soaks and lots of bacitracin ointment. They wanted to start Archer on another antibiotic, prophylatictally. KKI is really big on antibiotics and used like regular protocol prophylactically. Well, that’s not the way I wanted to do with Archer. So we respectfully declined. His toes are now wrapped with gauze and we are attending to the after care from that surgery.

 

Next was the surgery this morning where he had his feeding tube removed, at our request and I feel good about it. It is time. Yes, it was being used to add to Archer’s fluid intake on days he did not reach his 12 and half 8oz glasses or about 3000ml of water. But I am going to remain optimistic that Archer is not going to get sick when he comes home, that we can keep him hydrated and the days for the feeding tube are long gone, and indeed may have been long gone awhile ago. One less appliance in his body. One less thing to get infected.

 

The cool news is that while in the OR today, after giving me the usual spiel for general anesthesiology and then asking me if there was anything else? I laughed and asked him if he could also do a quick tummy tuck for Archer. He smiled. I then thought to myself, what the heck, maybe he could take a look at the supra pub. I asked and he said, It’s really a different part of the body and not my specialty. But the female anesthesiologist was listening very carefully I could tell. She asked, Who is his urologist?
I told her.
She brightened, He’s here now! I will go get him!
Isn’t that amazing. She did.
He was over in 3 minutes in his likable state, like friends. He got caught up, knew we had an appointment already scheduled for next week and said let’s skip your appointment next week, Want me to take a look today and replace it?
Absolutely!
The other surgeon said, Let’s do it.
We penciled in to the consent form the SP surgery, I initialed it, and it was a 2 for one day. That is a first. That is a very first. And thanks to the problem solving, taking initiative, good listener anesthesiologist, the surgeons were as elated as I was. They had the experience of collaboration and they said they thought it was really cool. It was. The way it could be.

 

It was a bonanza morning as then our ENT came over hearing we were there to say hello. I was again affirmed that we had assembled the right team. They were there for us. Thank you to the Archer Strong medical team.

 

Back to Archer’s feet surgery, it was a hideous kind where his toenails of his big toes were so clipped away they were essentially removed. Grizzly. What lingers for me though is how some doctors are quick to say, He doesn’t feel it.
But his body does feel it. His cells feel it; and there is memory. Archer is incredibly resilient and heals very quickly. I know that about him. Our whole family is like that really. But it doesn’t mean don’t take care of him with at least local anesthesia. So that is what we requested.

 

But the topping of all in my time away is this. After the scans and the above, when we returned and it was then Sunday night, and it was late and I was getting my pull out bench ready, I wondered where my feather pillow was. I said to Arch, Hey Arch. Do you know where Dad may have put our pillow?
Archer said, Under my head.
I looked and sure enough, the big king size feather pillow that had been a gift when in Atlanta was under Arch.
How come? I asked, Where is yours?

 

Archer has the exact same fabulous king size pillow, but his is in a soft white pillowcase; ours is in a crème.

 

Archer said, Dunno. It was not on my bed Friday night.

 

What? I said, Where did it go?
Archer said, I don’t know, Ma. It just disappeared.

 

That was it. I had had it. I contained myself as I knew I needed to ask first, but then Archer said, Dad has asked and they said they’d ask the other nurses and stuff but no one has seen it.
I said, Archer, are you serious? You mean to tell me that in the blizzard, your pillow was removed from your bed and you and Dad have no idea where it went?
He said, Yep.

 

I really can’t believe it. You wouldn’t believe it. Things like this are chalked up by the KKI staff as just a part of doing business. They really are. Since we have been there, Archer’s favorite knit hat, the one with Baltimore across the back and the Maryland flag on the front went missing. You’ve seen it in his pictures. He loves it. Well, apparently so did someone else as in our looking everywhere for it, knowing the last we saw it was in a bag for the night staff to wash, one of the staff said, it ain’t coming back. It’s the laundry. People take stuff. So, it disappeared in the KKI laundry. That would explain why our looking everywhere was bringing up nothing. And it confirmed what we suspected but just didn’t want to believe re his two best pairs of sweatpants too, one by one over the weeks, in the laundry. When I asked other staff if things get stolen in the laundry, they told me that it just happens. Sad. But this time, I really had had it with the complacency.

 

As I told staff about the latest incident, Archer’s pillow, taken right off his bed, off the bed of a quadriplegic, they said nothing. I could feel myself escalating. I went out to the front desk and said, So, all of you, I know you know that Archer has lost a number of things as you say, in the wash. Well, now someone has removed his pillow from his bed. We didn’t ask for it to be washed. But is it perhaps in the wash? Did anyone check for us? Does anyone care?
There was silence.

 

I continued, Can someone please say something?
Nothing.
I then said, I know you are a conflict avoiding culture around here, but could someone please say something and at least acknowledge this?
To which one nurse said, I wasn’t here last night.

 

That made me madder. Classic. Defensive and then shift any possible responsibility. The ol, Not me.

 

I then said, You may not have worked last night, but you are here now. I am asking for some acknowledgment and some action. Does anyone know? Has anyone looked? Has it been on your agendas when you had a staff meeting? Is this what you want to have happen? Why is it so hard to mind a load of laundry at night rather than forgetting about it and leaving it down in the laundry for a couple days? What else is the night staff doing in their down time? Why is it so hard for day staff not to go and check on loose ends from the night staff? Don’t you think it’s an aspect of caring for your patients to also care for the few items of clothing they have here? Items that you take and put into your custody to wash? Can we get some help on this please?

 

There was again no response. Nothing. It really really was astounding to me. They just looked and then looked away.

 

So, I took another approach. I said,
You can tell I am mad. I am mad. I am also sad that we have to be in a place where thievery unless there is another explanation continues and you appear to accept it. Maybe you don’t accept it. It’s hard to tell when you say nothing. It’s not acceptable. Hospitals are supposed to be places of healing. Now, we have to protect our children’s clothing too?
What would be nice would be if one of you could say, Louise, I know you are mad. Yes, it’s not acceptable. Yes, this is a place of healing and we don’t like it either that this happened.
Can someone, anyone say something like that?

 

One brave nurse piped up, and basically said, It’s not acceptable. It shouldn’t happen. And we will look.
I was grateful.
I said, Thank you. That is all. Some acknowledgment and some action. Thank you.
I added, Look, I am sorry I have to raise it like this, but when you all do not respond, I can promise you, it makes a situation worse. It doesn’t have to be that way. It’s not that hard to engage. I am appreciative you just engaged with me. Thank you. I hope we find Archer’s pillow.

 

But it is now almost the end of the week and it has not turned up anywhere.

 

I was really riled up on that one. You know the amazing thing that has happened, the for or six sets of staff we have had since that incident come in and say, Has the pillow showed up yet? Or, I think it’s really sad about the pillow. Whatever it is, it’s no longer a white elephant in the room. It is ok for them to talk about. It’s been freed from the tyranny of hush hush. That unto itself feels better.

 

Conflicted and difficult interactions can actually lead to deeper relationships if there is genuine engagement. It’s not about having to be nice all the time.

 

Ah, I remind myself, everyday a new opportunity to metabolize our losses and look for new open doors.

 

I meant that spiritually and energetically but I am also reminded of metabolizing good food. After I sold the building, Billy and I went to our friends at Miss Shirley’s. It has been so very long since I was there. The place I have anywhere from 4 to 8 meals and meetings a week, really. The place I love to take people to, and the place colleagues love to come and meet me. Another reason for my sadness. It was just a walk across the street. Anyway, it was totally unexpected and so very kind that during our meal, both the Dopkins came to our table. They want to do a fundraiser for Archer, so look for that. We are very blessed with such generous people in our lives.

 

This coming weekend, my UVA Theta sorority sisters have put together a luncheon and band benefit with our old friends and band members of Speidel, Goodrich & Goggins (SGG) down in Richmond, VA, and next weekend at L’Hirondelle, Baltimore friends in the Ruxtones band are playing a benefit for Archer, and last week, good business women friends from Network 2000 had a cocktail benefit for Archer. We are so grateful as we face the need to buy a van soon as we near and work towards discharge in a week or so. Oh my!

 

And it now looks as though they want Archer to have certain equipment to work on daily and we will need a space that he can get to, so we need to move on the garage rehab project. It will be a bit awkward certainly in the winter as Archer will need to power chair himself around the block and into the garage, but it’s the best we can do and we shall do it. He is good with it, indeed looking forward to it. But Archer is looking forward to everything. He is amazing.

 

Last TLOA home, he rolled down the block to Eddie’s supermarket. We couldn’t keep up with him. Billy and Dutch were trailing him and it was a great scene. It was really a wonderful great scene. A new horizon, a new vista. Archer Senft has not plateau. And he will never plateau. None of us does. It’s all just a matter of perspective.
Imagine, Archer could see that the library, Eddies, Tuxedo Pharmacy, the plaza itself and Starbucks are within his ambit daily. He was exhilarated I think, or more quietly pleased and content. It was really lovely. We love Roland Park so much. You know, I think the Olmstead Brothers would have really liked to have seen Archer rolling down the sidewalk, hopefully able to get to places because of curb cuts and ramps. It’s a very social, engaged and civic thing to do really. All good.

 

And that reminds me as I write the word civic. I’ll tell you another cute civic thing.

 

I left KKI early one cold morning last week and there was this mentally challenged guy pushing a huge trash cart at 7am down the sidewalk nearing Broadway. As we approached each other, I said, Good morning!
He returned, Good morning!
And he then said, It’s awesome!
And I returned, Yes, it’s awesome!
He said, Always awesome!
And I flashed a big grin, to which he responded with a flash of a larger grin, Why not! He was just literally passing me at this point.
I echoed, Why not! As we both passed, neither of us slowing or missing a beat in our gait.

 

I could feel though his turning around though to look at me, you know that feeling like you have eyes in the back of your head, and so I turned around as well to look at him. We were about 10 feet apart at that point and just looked at each other, both still in stride but slowed down, purposeful, and it was a wonderful morning connection.

 

From there I continued my walk to my car. A few minutes later as I exited the KKI garage, I inserted my stamped parking ticket but the machine spat it back at me. It only works about 50% of the time, at best I would say. I knew I had to get out of the car on this very cold morning, and I peeled myself out of the driver seat to walk to the guard desk leaving my car unable to back up from the gate. As I approached the glassed in guard shelter, and begin rapping on the window, to the attendant who continued to count the dollars, I raised my voice through the round voice box in the glass, and I said, I know you need to count the dollars, but can you please come to this window?
When she didn’t move, I said, hi Ma’m. It’s freezing out here and I’ve got a ticket that doesn’t work. You know the drill. It only works about 50% of the time.
She looked up and lumbered over. She unlocked the door and exited without a word, with a flower in her hair and no coat on. She took my ticket, walked to the machine, tried the ticket herself and it didn’t work for her either. The then turned the key and allowed me to exit. As she did so, she said sourly, I fix this machine all the time.
I said to her, I believe it. We need to talk to management. I can only imagine…if I’m frustrated, you must be 100 times more frustrated.
She smiled a genuine smile.
It really is so simple to try for a nanosecond to walk in another’s shoes, or their moccasins or their flip-flops.

 

I’ll close now with telling you something else that happened to the weekend before our big snow. I am driving out of Park School after just dropping off Dutch for his futsol game. I had texted his play drama teacher that he would likely be a few minutes late for the 2 PM practice. I was my way to exchange a Christmas give that didn’t fit one of the kids in the time of the futsal game and headed right back. As I pulled out of the Park School driveway, I was thinking about an exchange of text messages that morning between a friend of Archer’s from the Cape May and his mom about visiting that day. I had spent part of the morning, as is typical for my Sunday mornings, organizing Archer’s week and his social week, and was thinking about the text from four friends who wanted to visit Archer that day but I had to coordinate the times so that they would not be left waiting in the lobby for too long per the KKI strict rules, in the event someone else came to visit whom I did not have notice of which happens a lot and we do not want to discourage in any way. So, my mind was full of ops and minutia. As I pulled out and was thinking about the friend who would be driving a number of hours that day and the last text being that it might not work out after all, and my telling his mom that it was OK and not to feel bad about it, I realized that I was flooded with acceptance of life as it presents.
I had this sort of existential feeling like something extraordinary was happening to me.

 

Sure there is planning and effort, sure there is desire for certain things, sure there is expectation, absolutely there is hope. But there’s also this, gosh, what is it. It’s like a new form of acceptance. I can’t quite describe it, but I weep as I write you. I’m a fairly hard charging get it done we can do it together kind of person. There are a lot of aspects of that that I like. They’re also aspects of that that cause me to work too hard. And the discernment between the two is profound. I have been very conscious of this need to cultivate the discernment the last 15 or so years. But it wasn’t always that way.

 

But now, there is even a newer awareness. Acceptance. Of life as it is. And being OK with that. Being at peace with that. Being… Contented and happy with that. Something about that, It happened in this moment I was driving out the driveway. The driveway has wicked car speed bumps built at an angle which cause you to slowed down to barely a crawl unless you want to have your car wrecked up on the bottom. So, having learned that the first time years ago, it was welded to a memory of dislike. I have never liked to slow down to that less than a crawl requirement. Yet, that day, it wasn’t that way, and that beautiful drive surrounded by nature with the tall barren deciduous trees of January of the East coast on one side of me as I drove and the brown winter fields littered with unkempt briars on the West side, and the beginning snow storm with wet almost frenzied flakes blowing right at me, the moment felt new, and the realization was different.

 

You’ve had some of those too. Haven’t you? Of course. Young or old, when we discover something about ourselves, and it’s fresh. There’s a newness. As if not before known. And in that moment, overall well-being is experienced. Maybe it’s a realization about the past, or a relationship or a career choice or as simple as the way you interact or negotiate life. It doesn’t matter what it is. What matters is that it’s a moment of new self-knowing. It’s really quite sublime.

 

And we all have the capacity for these knowings all the time. For me, it’s like the Holy Spirit whispered to me, and I got my false self out of the way so my real self could listen, and she did. It’s all going to be OK. It is different and it’s OK.

 

I’ll write you soon again I hope. Every moment is very pressed now with managing and finishing the home renovation project and ordering equipment for Archer for home and seeing what is covered, what is not, appealing, lining up educational services, teachers, a particular mediation matter. Many things. Paula’s application to grad school, Pete’s transition to his new job, Dewey’s transition to his new school, Dutch’s daily needs. And loving and enjoying Archer. He is doing remarkable things everyday. It’s time to go home. We will be ready, and if not, we are ready enough. It will be good. Please come visit us.

 

Thank you dear Lord, for all you provide to us. Fr. Bruno, hear our prayer for a new beginning we are preparing for at home. Please say a special intention for us for nursing care at home and that it will all fall into place. That one is very important.

 

Hail Mary, full of Grace.
The Lord is with thee.
Blessed art thou among women, and
blessed is the fruit of thy womb, Jesus.
Holy Mary, pray for us sinners,
now and at the hour of our death. Amen.

 

Amen. Amen. We believe.

 

Sending love.

 


 

Wednesday, January 13, 2016

Archer Senft
Family & Friends Update
1-13-16, Month 5, Day 163
Wednesday

You stormed Heaven, and Heaven responded: Archer breathed on his own off the vent again.

God is good. You are wonderful. And we give thanks.

Yes, Archer breathed successfully on his own, off a ventilator for 30 minutes the day you said extra special breath intentions. He has since been breathing successfully off the vent day by day, sequenced as 60 minutes the next day, followed by 120 minutes, and yesterday it was 8 hours and today as I write he is on a sprint for 12 hours and says he feels very good. He says it feels weird when he is back on the vent. He is so ready to breathe on his own. It is so awesome. It’s amazing.

It’s just extraordinary.

And, I think it fair to say that KKI is inspired by Archer as well. It’s as if the flood gates have opened to a number of things we have been asking for and pleading for and even fighting for since our arrival. I can honestly say that ever since the celebration of Christ’s birthday, the opening has been happening here. It feels so good. Doesn’t it feel so good when you are really happy? It’s pure joy. We know you feel it with us and we thank you for every time you join with us on this journey. Truly, we are never alone. And we think of you all the time too. Archer will breathe off the vent. He will.

A most amazing thing happened with Archer last week. I mean extraordinary. Billy was the witness. I had to travel to KY and I woke up in my hotel with this experience that something happened in the night with Archer’s being off the vent. I texted Billy who was staying with him. He texted back and said Archer was fine. But he then added that Archer had needed to be suctioned over and over. I called him and he told me more, and when I got back that night, he elaborated even more still charged up about it many hours later. It is an absolutely positively outstanding, even chilling, story.

Here’s what happened. It was morning. Archer had no symptoms of distress or impairment with his breathing. He was off the ventilator. He had been off the day before for 4 hours and he was scheduled to go for 8 hours. It was all good. The RT began the chest percussion per the usual and then used the inexsufflator. Cough cough cough. Nothing came up. She then followed the cough assist with the suction catheter. Nothing came up. Ok, Good, said the team, no mucous. His vitals were good and it appeared he had no secretions. Archer began to make a sound. The RT then said to Billy that Archer sounded like he was growling.

His oxygen saturation level was in the high 90s, all good. She said she heard him growling again. She asked Archer if she should go back down again into his lungs with the deep suction; he nodded affirmatively. Still wearing her sterile gloves she guided the catheter down into his lungs. Some thick stuff came up, not a whole lot but thick. Billy said let’s go down again. They added some saline from a pink saline bullet. We usually do a quarter to a half of the bullet, sometimes a full bullet, in the suction session. Archer nodded. They went down again, and unlike just minutes before, the suction tube began to bring up thick mucous, a lot of it. It continued. Another suction down. More saline. Another and another. Archer continued to work very hard coughing as hard as he could to help bring the gunk up. The mucous did not stop. It was yellow and it was streaked with blood, something else that is not common for Archer.

Each time they went down, they used more saline. The mucous was so thick they had to switch out the 14 French sterile suction catheter kits four times because the catheter was so clogged. They had to continue using lots of saline which they would squeeze into Archer’s trach to break up the secretions. Needing more than one kit is a first. We have never since the day of injury had to go to even one other kit let alone three. And Billy said they went through 7 bullets of saline. All in one session. As if that was not a feat unto itself, Archer sweating and writhing and working it very very hard, nodding yes to go again and again back down, bringing up tons and tons of mucous, boatloads of it, it then happened.

The RT continued to go down, it had been about 40 minutes of non-stop suctioning, Archer coughing as hard as his diaphragm would allow, and each time as his body writhed and Billy held both very strong now arms down at his side as if in a straight jacket, per Archers request, he was, Billy said, just sort of growling and then…. out of Archer’s lungs rearing up through his trach came the longest ever in history plug of mucous. It was a solid cylindrical bloody thing. It was way too big to slither through a 14 French catheter, but the Catheter had broken part of it up, enough that Archer was able to cough it up just enough to see it in the top of his open trach in his neck. He was gagging and writhing to get it out. Using the strong suction of the 14 French, the RT coaxed it out, and out slithered a full 7 inches long, dark brown OLD very bloody solid mucousy dark yellow brown plug bigger than anyone had ever ever seen. Billy said it was like pulling the devil out of his lungs. Billy said it was the most disturbing and frightening process and most horrifying thing to look at, as well as the most exhilarating. Is that crazy or what? I am sure it’s the old adalectisis in the base of his lungs that he was getting out. And prior to this session, No distress. No warning. But there was the growl.

Things are happening now that Archer is moving off the vent. Oh yes, things are moving. It was the work of his own breathing and strong diaphragm that brought that Growler up. It is the vent and the pressure of the vent that kept it inside his lungs. Imagine how much longer that old thing may have remained in his lungs if he had stayed solely on the vent. Again, the miracle of the body, especially when it is allowed to function as intended. Thank you God for the miracle of our bodies. They really are to be beheld and marveled at. And thank you to all your believers. This was a work of your majesty with everyone doing their part, and doing it well. Using the gifts you have given. The RT did a magnificent job. It was a huge growth moment for her as she was one of the tentative RTs when we first arrived, afraid to go down when Archer so desperately needed her too, and part of the reason for the weeks of set back. As I write, I think there was actually something redemptive for her as I think about it. Certainly for us. And we forgive them all. They have chosen to listen now. Oh, see what listening does.

Let us give thanks for our ability to listen. Is there someone you need to listen to? There always is. Offer them the gift. It will be good for you too.

Let us give thanks to our ability to be thankful too. Have you ever thought about that? In order to be thankful, we call upon our ability to be reflective, our ability to look back and to be thoughtful. And when we do both, it allows us to gain insights, and often leaves us infused with hope that strengthens us in both the present moment as well as when we look to the future. I know you are thankful for so many things. As am I. Just choose one at this moment, one thing or person or experience or asset or whatever it is, one that you are thankful for. Place all your attention on it. Just thank it. That’s it. And if someone is thanking you, allow yourself to receive it fully. Thank you. A state of thankfulness is a full state.

I am thankful for the RT and Billy and their determination and for Archer and his grit and strength he mustered to get that Growler up and out of there. And for the RT’s listening when there were no other signs. She heard the growl.

Let us be thankful for our ability to use our ears in conjunction with our hearts, our intuition. What a difference it makes to tap into intuition. I wish I could do it all the time. I have been cultivating my own intuition for many years. I think it’s the way God finds his voice in my soul.

I realize as I write and hear about Archer’s Growler, that it is not the first time analogies of strong feline like qualities are attributed to Archer. Our lionhearted son, who lounges and grazes, has big paws, and when ready and desirous, pounces and leaps, to surprise us. Archer will surprise us. It will be majestic as God will use Archer’s life for his glory because Archer has accepted this life. I think that is what is happening. It’s for God and Archer to work out but I know there is something divine in this tragedy. And Archer’s lungs are a big part of the light and brightness.

We had Arch home again Saturday for another TLOA.

This time, so as not to wear out the generosity of a transportation angel, we tried an alternative method, a taxi! We had asked KKI if they could assist us with transportation for the TLOA and we were told it was not something they did. But that did not make sense to me, since a mere day prior they had said that a great number of their population served were families with little means. I thought surely they would thus have lists of resources for affordable transportation, including alternatives to owning your own vehicle transportation, for kids in wheelchairs. So, asking again, coupled with sharing what did not make sense to me, much to their credit they tried, and it was great. We both started making calls, and then Billy and I got our children in on the research project and we came up with a couple viable options, one of which was Yellow Cab.

Yep, good ol Yellow Cab. It was $30 each way, well worth it. We are all about learning from different experiences. This time, it was a rear entrance ramp that folded out for Archer to roll in and out on. The front two bottom braces of his powerchair were attached to two large retractable seatbelt like straps. He powered in slowly. As he did, we yelled, Watch your head! as the top of his head grazed the inside of the taxi van, barely enough inside height, but, as we said and laughed, It’ll do ya, donkey.

Once in, the back two bottom braces of his chair were attached by large hooks and locked into place. It was the same set up I am sure for hauling a motorcycle or scooter or other piece of equipment, or horse… or Archer.

Archer had just received a wonderful present from old new Atlanta friends who managed to locate a hat by the same brand as the hat Archer was wearing on the prayer card. And, they also very generously sent Archer a pair of real Ray Bans much to his delight. He asked to wear both home in the taxi. He is really like his old self for sure. Here is a picture from Saturday.

IMG_1135

He looks really great doesn’t he? He’s come a really long way. Always so happy, probably happiest, when going home. Better than ever. And almost off all antidepressants which he so wanted and doesn’t seem to need. If he does, we’d revisit that of course, but he so wanted to be off of all pain meds and narcotics. We had the same desire and, with regular pushing of the issue, our medical team began weaning him. He said he feels great and better than ever. Thank God we never had any heavy doses when just about every facility recommended bigger doses just because of being a quadriplegic. Archer is really strong. God is really Strong living as he does in Archer. I really thank God every day for that because imagine what Archer could be doing or thinking or feeling about himself, his life that could be very dark and negative and ruined. Instead, he is genuinely happy to be alive, he is resilient and he is grateful and determined to live. And live well and fully.

FT, Family & Friends Therapy, is still the highest medicine.

As for friends, Archer has very good friends. We are so grateful for his friends. They go out of their way to visit him coming downtown to a part of Baltimore that does not have a great reputation, but is quite safe it seems thanks to the security folks KKI has patrolling outside. The friends still come too and come back, even when they have had to wait in the lobby, since Archer’s visitors quotient is still limited to no more than 4 at a time unless Billy and I are both there and can take him down to the lobby. We have done that now for Arch three times since Christmas, but it’s not quite the same as allowing private and free time for the kids to spend time with each other. It’s a catch 22 for a teenager we feel because we can give some private time for visitors in his hospital room if we leave the room since there is a nurse on call, but it is not necessarily conducive to being with a little group just hanging out. On the other hand, Archer and friends can do the hanging out in the lobby, but by KKI rules, both Billy and I have to remain with Archer, so it’s not quite the same either. Ah, can’t win for losing sometimes, but all in all we are doing fine with that and FT time is good. Billy and I actually enjoy our time together on those lobby visits since it is still rare for us to both be with Archer at the same time and we nuzzle together in a chair across the lobby to catch up on our long list of daily topics for discussion.

We do notice the interactions visiting friends have with Arch. It’s interesting really. Some friends are really exhilarated or fascinated by Archer, and he is very thrilled at seeing them. He loves to hear about what is going on. Daily kinds of things, like who is doing what and what happened in advisory at school etc. I imagine for most friends that when they see him and hear him talking now, it is almost startling as it is quite a leap from where he was. Let us just pause and celebrate that. You know how that is. When you haven’t seen someone for awhile, usually a child, and then you do and they have grown so much that it takes your breath away. Or, sometimes as adults, they have shrunk so much! It’s fun to see and hear their amazement and it definitely juices Archer up as it can be hard sometimes to see the dramatic changes when you are so up close and personal working on every day.

Something I have especially noticed between Archer and his friends is a certain kind of…a certain kind of intimacy that seems to happen when they bring food as they often do much to Archer’s pleasure. And when one of the friends, boy or girl, is brave enough to be the one who feeds Archer. So, if you can imagine, feeding someone who essentially has no hands or arms to assist himself, you try to feed him steadily without missing his mouth which he does not open like he’s at the dentist office but rather opens like you and I open when we eat, sort of just enough, right? And since he has no way to catch food or slurp up food or use a napkin to dab his mouth or wipe dribbles off etc, you want to get it in just right. If it were you or I in Archer’s situation, even a light potato chip can fall from your mouth quite easily if the person giving it to you is not deliberate and, very gentle. There is a real delicacy, as in a required delicateness, to feeding Archer. And, out of respect for food and the process of eating and chewing and enjoyment, there is also the requirement for a great deal of patience, and I might add, a certain symbiotic rhythm that takes place when you feed Archer, or better said, when Archer allows you to feed him and you do it well. So, it’s a real experience for both Archer and the brave friend. Some take to it very easily. Others wouldn’t touch it with a 10 foot pole and have told him so. And others who offer, I have seen Archer deflect and assign the task to someone else with a certain small laugh as he does, like, I don’t think so X (smile). Y, can you please give me that sandwich?
It’s interesting. There is a certainty dignity I think Archer needs. We all do.

For those who volunteer to feed Arch, and whom Archer allows to feed him, I think what develops is trust. Who would have guessed. Total dependence and reliance, and the reciprocal experience of being dependable and being relied upon. In these small but very meaningful brave acts, there develops a new knowing it seems to me. I think the young become wise in that intimate very primitive and very lovely act, and those friendships mature and deepen.

For the parents of such dear young adults, thank you. You have every reason to be very proud of your sons and daughters. They are very beautiful in their love and care giving.

You know there is something else I am also thinking about right now about food and Archer. We all know Archer loves to cook and is a foodie. Now that he is eating more and more, which began when we were in Atlanta feasting on the meals delivered by the angels on a daily basis which he would power down as if a bottomless pit, Archer will often say, What’s for lunch? Or, Can you bring me x, y or z food. When eating, he will often say he has had enough, and still other times he will say he is more in the grazing mood, partaking in whatever is offered but in small portions. Interestingly though, he said to me yesterday something I had not thought about before. At all.
He said, Ma, you know I can’t feel my stomach, right?
I said, I guess so. You can’t?
He said, I can’t.
He continued, I’m not actually ever really hungry. I just want certain foods because of how they taste. And I want to put back on my weight. So I figured I better watch how much I eat of them because I want to get bigger.

Isn’t that curious. I was actually a bit stunned. Not the first time of course on one of Archer’s simple statements, but I hadn’t thought about this before. There has been a lot of talk about Archer’s appetite but I never thought about his stomach and or being empty or full and having that feeling. Archer is hungry because his mind tells him to be hungry.

I think of all the months when he was not able to taste at all because of the feeding tube in his nose and the ventilator in his mouth, and how that continued with the cuff and trach and vent. Now, with a cuffless trach and beginning to wean off the vent, I think his taste buds are back in full swing. I have noticed he is much more discerning about what he eats. He also said to me a week or so ago, right after Christmas, that he thinks he better take it easy on the sweets which he had plenty of with holiday visits and such. He is up to 136 lbs, from the 123 he once was at his lowest count I think, so we are happy about that. A lot more to go, but no rush really. Slow and steady will win that race I think. He is eating a ton still and also burning a ton of calories trying to breathe off the vent. He loves BBQ in every variety, and that has been his main meat staple. We could do a lot better now I think. Foods that require a fork and knife have been less plentiful. Sandwiches and such are more the norm because they are easier to eat for Archer. We’ll have to be more mindful about this I think as he begins to breathe on his own and is wanting to put on good weight and no longer needing to just chow down for the caloric intake for the vent weaning.

When Archer was home last weekend, Dutch wanted to cook bacon for lunch and make BLT’s but said he didn’t know how. It was great because Archer said, Midge (he often fondly calls Dutch ‘Midget’ since he’s the youngest; it stuck as a funnyism since the boys figured out Dutch will probably be the tallest of the bunch).
Archer said, Midge, I’ll show you how it’s done.
We all broke into the well known chorus of Archer’s self proclaimed accomplishment of the summer as the main cook at the Beach Club, “66 pieces of bacon at a time on the hot griddle!”

Archer had a number of these food records he would tell us about that always had us marveling. He’d come home, and we’d say, So how was the Beach Club today?
And he’d define the quality of his day by saying things like: 32 orders of onion rings, 23 Chicken Ceasar Salads, 47 wraps, 63 French fry orders, and …. 66 pieces of bacon at a time! He was very proud of what he’d produce, and we always got a kick out of it that he kept track, in his Archer like way. But that is so Archer to do that. Methodical, organized, numbers, production, how to’s etc.

You know, it’s interesting what can happen when you just put something out to the universe. Another blessing for Archer are the visits by his lacrosse coaches, and in particular one of his coaches who comes and spends two days a week with him in the gym. What a blessing he is. They have all come with love and support and Archer so loves and looks forward to their visits. So, I was thinking out loud with his coach how I want to make sure that we keep Archer’s legs and feet in good shape for when he is able to walk. I know Archer is going to walk someday. Right? Of course he is. We all know that. Because we are believers! While medicine is not yet willing to say it’s so, it will happen.

Just like weaning off the vent. A brave 2 pulmonologists said 8 more months, all the others said he would likely not ever get off the vent. Maybe he wouldn’t have, but he has. Why? Because we believed and prayed and got the right people on the Archer Strong bus. So, as for his walking in the future, always mindful of that as well, I was thinking about what we need to be doing now. And you know what? Archer’s coach came last week saying there is a possibility that Archer may be stretched out by a sports trainer who stretches the Ravens! How about that! And why not? We need to keep his legs stretched and ready whether he feels them now or not, and even if not for a long time.

I also revisited with OT to rework a set of fiberglass leg casts for Archer to wear at night to elongate and stretch his calves. We had begun that process but it ended when they rubbed his feet badly. It is time to resurrect them! We cut out and remolded the areas that are problematic and will start again. There it is. It’s always fine to begin again. Just like Fr. Bruno told so many, Begin Again. I really love that.

As for why they were set aside, we just have to be careful with anything touching Archer’s skin, especially something with an edge, that it does not rub in any way as to result in autonomic dysreflexia (AD) or a pink spot, the beginning of a dreaded bed sore since Archer’s not moving body has no way on it’s own to move blood like we do when we move and stand and walk which is what heals wounds and cuts and such. So, his skin is at risk for easy skin breakdown. So, if you are ever with Archer, always be on the lookout for those spots. We want to avoid them like the plague, and all eyes are helpful eyes. Any clothing that is on too tight, like tennis shoes, any snap or zipper that presses against his skin, can start it. Any wrinkle in a shirt or a bed sheet. And since he has no feeling nor can he move to see himself, we have to be on alert checking his skin daily head to toe.

Please cherish so much your ability to move. Gosh, how we take it for granted. Every little movement you make that keeps your blood flowing and regulates the rest of your body, your skin, your organs. A child’s ability to squirm in a chair, to be cherished. A wiggly leg, to be thanked. The ability to smooth out the skirt on your backside before you sit down, to readjust your bottom in a chair, what Godsends, even your moving your hands when you talk. Ah, like our breath, let’s breathe in that awesome miraculous capacity that our bodies have to be mobile and it’s so automatic. Our left side balances our right side. The human species can be so very beautiful in motion. We were intended to be mobile, and upright.

We really really need to get Archer upright and weight bearing. I told you about that amazing power chair that will allow Archer to stand up in the braces. Well, as it turns out, I wish we could get it sooner than later but they take many weeks to assemble the customized parts. Sadly, we learned last week or so that Arch is losing bone density faster than they would have correlated to his injury, so we are keeping a close eye on the calcium levels. I asked the osteopath who came to visit about this and asked him to think about solutions that were not related to a prescription for a med. While he couldn’t think of any, what is really needed for Archer, and for all of us, is to be weight bearing. Upright, walking, standing, on our feet. Please cherish so much your ability to move. To stand. The very act of just standing. Archer is really working on sitting, standing I pray will come someday. Even your lifting your feet to get in your car and then placing them again on the pavement when you arrive—what an important act for your body, your whole body. All these amazing daily ways we move that have us weight bearing on our feet prevents bone disease, and high blood pressure and all other kinds of ailments. It’s true.
So, yes, Archer is at risk for a number of things related to his being totally paralyzed. But we will figure out a way even if we can’t get Archer weight bearing very easily. His stand up chair may be the only way for a long time. Strong bones are really important to us all. Remember how when the children were little, you would walk the little newly toddling baby holding her hands as she stepped flat footed across a small space, a few steps before she fell down? Well, I wish we could do the same with Archer but he has no way of supporting his body on his own. He’d just puddle and probably hurt himself pretty badly since he’s so tall and would have a long way to fall. And he’s so heavy that it would take two or three very very strong people and a whole lot of trust on Archer’s part to give him a weight bearing experience. One of the biggest issues for me at home I think will be help moving Archer in his bed every 2 hours for weight shifts, or every 4 hours at night, but we are working on a nursing company now. We’ll figure it out but all these things are very real and I am thinking a lot about them as we aim for an early February discharge.

So there are many preparations to Begin Again. We have been abuzz with help on technology at home. It’s really amazing and I believe it is very much a part of the Creative Miracle. God gave us incredible intellect to use it for his glory. Modern medicine and ancient medicine are certainly examples we want to mine and explore, and technological expertise and advances are no exception. We have been in contact with those who have built and designed the Echo which we are pairing with Archer’s iphone. If you don’t know about the Echo, check it out on Amazon. Amazing. It was developed since Archer’s injury, how cool is that! I think we will have to buy him the most recent phone to pair with. I am told we can program to one and program another Echo to another space in our home, so hello multiple Echos I imagine. We will also next explore Microsoft’s Service Pro 3 system which we have heard very good things about to aid Archer in school.

So, what is the Echo for those of you who may not know? It is available for anyone. It is a device intended to be stationary in a space that allows a person to control the environment of that room using his or her voice. It is so perfect for Archer. He can ask the device to open up his iphone, similar to Hey Siri which we have been using, and read him his texts, but also the Echo can obtain for him anything from Pandora by way of music or books on tape which we hope to have a good library for him, as well as his own music play lists which we all know Archer had very good ones. Maybe he’ll make some new ones eventually. But the Echo can also control the lights of his room with certain special switches.

With the generous time and talents of one of its scientists who has been our guide, Archer’s room at home is now equipped to do these things as of two days ago. It’s the neatest thing and I can’t wait for him to see how he wants to program his environment, for example, the two lights above his bed for being able to see him in the night to care for his suctions and sweats and such, he will be able to dim with his voice to a very very low glow, and even to turn them off and then back on again at a very very low dim with certain commands. Now, that’s quality of life. Imagine if the hospitals could go Echo and all the misery of people not being able to sleep at all because of the lights in their eyes might be diminished somewhat. And he can program his entire room for certain times of the day, such as Rise and Shine, and he can have as many lights, music, weather, messages, whatever he wants come on immediately preprogrammed. He can say Emergency if we preprogram and every thing will go on full. He can say Movie Time or whatever he chooses, and we can preprogram. This will also be huge for his showers, which we are in the process of connecting the Echo and to the special heat switch for his roll in bathroom so his chills and hopefully therefore his blood pressure remain steady and do not cause his body distress as can often happen with a shower and changes in temperature as well as the water pulsing on him.

The physicist angel has taken Archer’s quadriplegia situation back to his team, and they will work on the how to for using the Echo with Archer’s internal Heating and Air Conditioning Unit made my Mitshubishi that we installed. The know how is there we are all certain, it just hasn’t been discovered yet. With Archer as a guineapig, I think that discovery will be made soon and then many others can benefit as well. It’s all very good. I know that gives me so much joy to think that whatever might be pioneered or sheperded by those helping Archer can help all quadriplegics and we are learning a ton about a whole new world.

You know, we as a human species in 2016 still know so very very little about Spinal Cord Injury, especially when it’s what the medical profession deems and calls Complete. We really don’t know what that means. At least that is how I like to see it. What we do know is that we don’t know. Boy have we ever experienced that. There is some amazing knowing and we hope to be connected with that. One of the hallmarks of the doctors we seek for the Archer Strong Team is having the wisdom to know what we do not know, and the belief in the mystery of what may happen, with God’s grace.

I think it’s hard, even goes against medical school or scientific training, for many doctors to embrace the mystery. I am just so stunned about how sure so many doctors can be, not all doctors of course, but a Teflon quality they possess in the sense of they know best and they know all. I don’t know where that kind of attitude comes from but I will take a try at wondering, and it is this. Yes, most doctors are blessed with keen intellect. And we are grateful for that intellect. And that intellect is God given. It is good.

But somewhere on the path of learning or practicing, many have lost their way, getting a bit drunk on what they do know that many do not and getting a little too big for their breeches being relied upon as experts with a language that most others do not speak and would take many years to learn. It’s a certain old boys club. Insider mentality. So they can use the language of medical jargon as a shield to not be questioned and thus to always be right.

The patient doctor interaction by and large thus suffers. It is not one of joint entering into, like a partnership. It’s rather like a bad marriage, a bad partnership, and often no partnership at all, but rather one where one person decides all without an explanation that makes any sense, with few checks and balances related to the human factor, since doctors rarely are in consult with the person who also carries much wisdom: the patient or the patient’s family or advocate who knows them. Of course, this is not the case for many good doctors, but honestly the mentality of doctorthink autopilot is one to be on guard against.

As Archer improves and we feel heard– thanks to one leader at the top at KKI who was willing to listen to us–we feel gratitude and experience hope that together we can make changes for Archer’s care, and we have. It began with him. He gave a different command to his medical staff, and it is so different now. It makes a difference to have a breakthrough with a person who has influence or authority, change happens faster. It really just takes one person, the right person, to make change. The relentless pursuit of quality dialogue is the tried and true best way. It begins with face to face listening. We feel more in partnership with KKI as a result, and it wasn’t always pretty by any stretch. It feels good because everything is easier. And trust me, it’s a lot easier for them too. Yes, isn’t that wonderful. Better for both. It is.

It does not mean we let up on remaining vigilant though, especially now that we are sprinting off the vent. I’ll explain why. But first I just feel the need to say that even when Archer turns the corner because our medical team is the right team finally, I can’t forget the ways of the medical world that are in such need of teaching and guidance and leadership about how to be in relation to others, the patient and families. It’s just so big and so looming and so important for the health of people everywhere. I know it is being tackled by a number of health care providers and I hope they are already making great strides. But it is not the norm I have come to believe from the many many stories you have sent me.

The kinds of changes needed are more about worldview though. An attitude. A belief. A worldview that believes at every turn in the capacity and efficacy of the patient, in the same way the profession expects the patient to believe in the capacity and efficacy of the medical staff. If you drill down in an organization to the workers on the front line as well as look up in an organization to the top ranks of leadership, you can get a good idea of the worldview. If a hospital or medical system were to espouse real collaboration, health care would look and feel very different. But to do that is hard. It’s mainly hard because it goes against the ego. And in organizations trading on a lot of power, one might be hard pressed to find the kind of leadership that could take on systemic change. It could happen, in one corner of the world a time, one department of a hospital at a time, one floor of a unit at a time. Start little and ripple out. I will continue to think about this.

I believe the wisdom to change these systems, even here at KKI and at JHH, is already here. We just need to unlock it and harness its positive energy without our egos and human weaknesses creating chronic barriers, the blocks which suppress energy and become the seed of things not good. We need to go with our nature, and ask for divine guidance so that many people will experience more well being in the medical system. Let’s all breathe in that wonderful air God gave us and intentionally hope that leaders in medical systems may be open to listening deeply to the patient who wishes to have a voice.

I digressed again. So, back to technology, Archer is on fire with Hey Siri and the Echo and I think genuinely excited for what is possible once we get home. On his next TLOA, we will experiment with the lights.

Oh a funny but not so funny thing, but all in all a good thing. The generator for our house, with a fairly elaborate and seemless installation that had behind it weeks of careful installation planning, gave us a warning that something was not right. As for the background story, we had an amazing collaboration with BGE and Alban CAT and our contractor, aided by our collaboration right hand angel, that culminated in the generator being installed on an expedited timeline. The nice weather certainly helped as well. It had entailed a number of walk arounds our tiered property, which is in a plot in the city, with necessary safety set backs, necessary distance from our retaining walls that hold in 100 plus year old backyard earth, plus appropriate siting so as not to be intrusive for our neighbors or us and that would still allow other activities to take place in the yard, plus figuring out trenching needed from the house through or around a retaining wall for electric and a new gas line, then the need to level a large area of ground, position a meter, form up a 9×5 concrete pad, agonize and try every which way to not have to have another tree removed to clear a path for the forklift and crane, expertly driven, to lift and place the large pad that gently swayed its grand weight in the chains of the lift high up in the air as it was gently put in place, followed later by the same skillful placement of the generator, itself over our back alley wall onto the pad, all two tons of it, lifted over our alley wall. And then there was another concrete form but this one vertical which will act as a firewall. It was a pretty big morning when it all culminated. I must confess, once the generator was in place, I did feel a quiet sense of relief that Archer would be safe.

It had not fully landed for me what it meant when we were told we would need a generator. Yes, Archer is still on every type of life support: feeding tube, pace maker and ventilator with tracheotomy but we also feel like we are out of the woods from those life or death days now behind us, marching proudly into the new normal. Archer is very much alive, and we are highly focused on quality of life now. I remember asking, Do we really need to have a generator? The answer was a unanimous yes, especially because in our wonderfully heavily tree’d neighborhood, it is not uncommon that we suffer power outages in the winter due to ice and snow and trees falling. Even so, I thought to myself, maybe we don’t need a generator if he goes off the ventilator. I was ambivalent. And, I thought, we have batteries as back up. Well, all it takes is one time when the nighttime hospital staff forget to plug in his power chair overnight and it won’t work without juice, which could have happened to us as well in the future so it was a good learning to experience, or the one time when we thought the ventilator was being powered up on Christmas when it really wasn’t and we were tensely counting the minutes before we rigged up a power source, or the thought that we wouldn’t have an electric ceiling hoyer to lift him up and out of bed, or even if we could, that we couldn’t put him in a chair that would power, but we could put it in manual, but the temperature shifts that could and do occur when the power is out and how they affect Archer etc etc, we could make due, but as for the ventilator, not really much longer than 6 hours, x 2. OK, so, yes, we definitely need a generator for Archer and indeed the generator does bring a lot of piece of mind. And, we are very grateful to have it, and I felt at peace when it was installed.

So, what happened? Well, after it’s big installation, I returned to the hospital as par for the course. I had not given it much more mind. I did some mediations last week, and I returned home for the first time that day at 8pm. I was the first one home all day in my new, hopefully temporary, world of make sure the other family members are cared for by the extended Mom angel network while I am away trying to make all these ends meet, sometimes by the hair of my chinny chin chin. As I arrived home, I was met almost immediately after dashing from my car inside and closing the front door behind me. Still wet from the rain and my coat barely off, there was a knock on the door. It was one of our neighbors. As he and I spoke about why he was there with flashlight in hand, I became aware for the first time of a pulsating sound, loud, like a car alarm, as if down the street kind of sound and intensity. Thing was, my neighbor shared with me, they checked all the cars along the street as well as the street behind our block, searching for the origin of the alarm which had begun to siren around noon that day. It was now about 8pm. Yes, I could definitely hear it, a bit muffled by the rain, but loud. How curious. He then told me with a sweet laugh that he was waiting for someone to come home because, he was fairly certain, it was our new generator. Oh my.

Indeed, the source: Archer’s generator. So, there he was, another angel neighbor being vigilant for hours waiting for someone from our family to return home. Yes, I could certainly hear the alarm pulsating and yes, I gasped to him, Oh my, how do we turn it off? And, yes,in my next breath I exclaimed, I am so very sorry. The sound was everywhere.

We swung into action. He and I raced to check the new circuit breaker panel in the basement but to no avail as we switched off all the breakers and then the main to see if the sound would cease. Nothing. So, in the dark with his flashlight, our intrepid and generous neighbor, ventured back out in the pouring rain down the embankment in the mud to the generator itself, to the lock box on the side. I had been given a set of keys the morning of the installation and had set them in our utility closet to be marked later, not sure what they even did, but knowing they went with the generator. Now I know. I put the keys in his hands. With the box open, he reached in and with his steadfast determination and level headedness, he pulled a large orange emergency knob. It silenced.

Thank you, dear Lord. Thank you for kind and generous neighbors. We are all neighbors to someone. A good neighbor is a treasure. We are blessed with many good neighbors. You know, if there is something you can do for a neighbor, whether a kind word, looking out for the safety of their property or helping them in some way, it’s a good thing to do for relationship. It’s a good thing to do as a citizen really.

And as for pulling that big emergency knob, I am not sure I would have known myself to do this. So, it was a good lesson. Sort of like how my mom would not let me drive when I got my driver’s license at 16 years in Illinois until I showed her I knew how to change a tire. So, I learned and showed her. True.

So, nine hours later, our neighbors were at peace again. We are so sorry. They were good natured about it, and we are grateful. And, I am glad it happened I guess. It’s like one of these really important things installed in your house and you don’t know fully how to operate it but take it for granted, like heat or your hot water heater that might have the pilot light go out and you need to know how to reignite the burner. It’s a good learning for us to understand. And I had a story for Billy upon his return. So, it was good all in all. As it turns out there really was a faulty piece, and we are happy it happened now so it hopefully will not happen again. Like I told my neighbors and I really meant it, when and if the electricity goes out in our neighborhood this winter, or on our side of the street which is likely, everyone can come to our house. I mean it.

It’s funny as I write that, because when Billy and I were first engaged at UVA, and we both announced it to our respective sorority sisters and fraternity brothers at the weekly Monday night house meetings, for me in a more ceremonious ring, pin ceremony where everyone is left in suspense wondering during the beautiful friendship ceremony who it is who called the ceremony and whether she was given a friendship ring, was pinned (who gets pinned anymore?) or became engaged. Without sharing too many sister secrets, by the time we were on the go round the circle for engagement as it was I who gave the signal as I blew out the candle in the dark still able to see all my sisters faces full of anticipation as to who it was, the room erupted in delight and best wishes and hugs and sweet tears, a total surprise to them as I was the president and by ceremony had to start the ceremony itself, and go first for each round, so it was a wonderful magical memory for me with my Theta sisters. It was then followed by Billy’s Zete brothers who came knocking at the door to pick me up, literally, and carry us both to a local watering hole where there were many exotic shots consumed and many toasts. So, a couple hours later, on a Monday night, quite toasted in every respect and basking in the warmth and glow of youth and deep friendships, I remember standing up at the large table and announcing with every love sentiment I had that every single one of those there, everyone could all come live with us forever. I meant it.

Yes it was also funny, and I imagine memorable for us all, because it was that feeling of total love and unity that I knew we had for each other, helped along by celebratory alcohol. So, standing in our front door as my handy neighbor fixed the problem, I had a brief flooding of that same endorphine as I hugged him with gratitude and said the neighbors were welcome at our house when the power went down.

Ah, this crazy journey with Archer.

Back at KKI though we had another issue, Archer’s profuse sweating.

I should have noticed and asked Why? But I did not. We have battled Archer’s sweats since the beginning and tried different things, the most recent and effective found at Shepherd to be propantheline. It was odd for the past 8 nights or so at KKI, that Archer was waking us up all night long asking me or Billy whoever was there with him that night to wipe his sweat and get the matted sweaty hair off his face, similar to some of the sleepless nights we would have at Shepherd. At KKI, we had a number of similar nights recently as well, but they were related to other alarms going off mostly falsely or correctly but unnecessarily as we needed new settings appropriate for him. You know some of those stories. So I didn’t think long enough about the wake ups related to sweating as there are always one or two. And, honestly, I think sometimes he just wants the assurance we are there. Who wouldn’t? After all, it can take a medical tech or nurse many minutes to return, so it’s so much easier for him and his needs to have someone there with him all night, and that way he also has a decent chance of getting some sleep. So I didn’t say anything or ask but just noted it in rounds in the mornings. I would say things like it was a night of a lot of wake ups, sweating and such. I realized I needed to tell them about the nights a few weeks ago since, after all, what happens with our caregiving at night is largely unknown to the medical staff and thus likely not reflected in their records, so I figure it’s helpful information for the rounding doctors to hear so the best decisions are made. Since the KKI leader gave the word at Christmas that we are on for TLOA’s and then weaning, I have noticed that what I share in rounds is responded to for the most part. I try to keep track in my medical journals but that’s it. Anyway, last week, I thought something was really wrong one early morning around 5am when Archer asked me in pain if I could massage his shoulders since the PT was especially hard on him the day before. He is working on sitting up on a mat on his own propped up using the air splints we bought from Shepherd.

As for sitting and trying to build his abdominal muscles again, Archer is up to 2 minutes and 15 seconds of sitting! Yeah! For Archer, this is a big deal as it can lead to more strengthening for his breathing and eventual getting rid of the trach, and it can lead to greater independence for sitting up maybe someday on his own without a lot of chest straps that we have to use now. Anyway, as I slid my hand behind his back to find the right spot on his shoulders to work on with the tips of my fingers to give him some relief, I realized his shirt was drenched. I mean wringing wet. Besides the fact that that wet clothes can lead to bed sores (–including rain as I think about it right now), lying in any kind of damp, wet or soiled sheets or clothes is a bad situation for Archer. So, I went for help. While we waited for assistance to arrive, in the dark, I asked Archer if it was unusual as it seemed unusual to me, but then again, he hasn’t complained of shoulder pain the middle of the night necessitating massage for many weeks. He thought about it and said he noticed he had been given a pill cut in half and wondered why, but hadn’t asked. I asked him when that was, as these last couple weeks, we have been stable with a good medical plan, steady as she goes and making progress. I said, a half pill, of what? Are you sure? He said yes, but as he thought about it, he then said he was not positive when or for how long but he remembered daily half pills. We had been on a weaning of the last of the antidepressants and he said he thought maybe it was that but the more he thought about it as we sat in the dark in the early hours of the morning, he said he thinks it’s the propantheline pills.

He then said, Ma, I’ve been pretty uncomfortable with the night sweats since the week or so before Christmas.

So, I went immediately to inquire about the propantheline, still waiting for help with the drenched shirt. It is the drug we appreciate tremendously and that took Shepherd and Archer awhile to get the right dosage. It regulates secretions.

Sure enough, as I stood at the front nurses’ station waiting for them to look back in the medications records on the computer as to dosages given to Archer of the sweat drug, I learned that KKI had indeed decreased the dosage. I felt frantic. I asked them to look at the week before and the week before that and the week before that. What I learned was that they had been steadily decreasing it since a couple weeks before Christmas. I could feel the heat in my body but what I was really most aware of was the confusion in my head. I stood there in my pajamas, I asked, Why would you do this without telling us? I said, We have been through a number of struggles with you here, it should be in the records how we feel about propantheline. How could this happen? She said it was in the scrip and that’s all she could tell us.

I felt myself starting to wind up. I pressed her since she herself was very much part of the early days. Why would this happen, especially when we had weighed the pros and cons very deliberately with you all back in our first two weeks of arrival when KKI had wanted to take Archer off propantheline completely believing it increased mucous production. I continued, you know Archer and we had a difficult decision to make back then. You know the propantheline worked for him. It was never told to us at Shepherd that it would make mucous production worse. Surely they would know. We have no reason to believe it is not good for Archer.

It was another one of those not sure whom to believe situations. I was on a roll now as it flooded back to me. You know unresolved conflict is like that. You can problem solve something all you want, but if the underlying conflict is not resolved, it can rear it’s ugly head again and again.

As I thought more about it, the memories flooded my screen. I remember the Nurse Practitioner in the JHH PICU commenting on being unfamiliar with propantheline but noting how much Archer benefitted from it. She saw him as we experimented that week with a lower dose. She saw Archer drenched and an absolute puddle not to mention exhausted a mere one day of lesser dosage. We had remained open by saying we’d try the decreased amount. He did try, but it did not help Archer and as far as we could see, his lungs were suffering as a result of those first couple weeks of their not understanding Archer’s needs and this situation was part of that fiasco. Luckily, we nipped it in the bud after trying for a day. And she was terrific because she understood the dilemma we were in: the pediatric pulmonologist said Archer needed to be taken off the propantheline, while we felt he shouldn’t be. We felt a lot of pressure. We said we’d remain open but only if we could find a suitable alternative to give Archer relief as I was not going to have a situation where he suffered when he didn’t have to. And as for Archer, he literally would plead, No, Ma. Don’t let them reduce the propantheline.

So, we tried. And we then said no more alternatives as there are none we have found that work as well. And it was truly just one of those things that we had to trust our instinct and experience. So we had been clear as we left the PICU and in the week after the PICU that if the alternative they came up with were not effective, we would go back on the regular dose.

While the experience we had in the PICU with that particular NP regarding Archer’s sweating and putting together a good care team was positive, because she paid attention and cared and could put things into action, and while this lead to our brainstorming with dermatology about Botox and facial cremes and such, and while Archer tried an antiperspirant facial creme but the itching was unbearable, we ended up choosing to stay with the propantheline since Archer again pleaded it was the only thing that would allow him to sleep. Archer’s knowing himself was beginning to manifest more and more sharply then I recall thinking. So, while the decision about propantheline or not was a labored and very carefully dissected aspect of his care, we were convinced that unless something else came along, Archer was sticking with propantheline. We were more convinced when we learned that neither JHH docs nor KKI docs had much experience with it, and since Shepherd docs did and their entire M.O. is to wean patients quickly so they can aggressively rehab them, we had a confidence in this medication, and it worked for Archer. Once again, we are very grateful we were at Shepherd and introduced to it.

Bottom line, Archer knows himself better than anyone. Other bottom line: Archer is doing just fine with secretions and is getting old crazy stuff up and out. There is no new mucous, or very little. So, back at the front desk with my inquiry about why they had decreased the propantheline, I told them he is miserable. I insisted that the dose be put back to pre Christmas amounts when it worked. I also insisted that they never add or decrease any medication without our knowledge. I told her they cannot do that. That it was wrong. How are we to trust them? Do I need to go back to the days when I need to be present and Archer needs to ask about every single pill he is given? I think the answer is yes honestly. But it shouldn’t be that way. It’s crazy. Here we are I thought, with all the medical struggles behind us, and yet I could feel myself moving back into mistrust mode again. It’s not a good place to be. That kind of situation where you can’t trust the care givers is a very bad one and compromises healing. I was not going back there again.

I said, Can we figure this out please and get him back to his regular dose the next dosing time? She said yes. She said she thought we knew as it was on a print out of all his meds she put in Archer’s notebook and gave to Billy last week. That spiked my anger again. Last week? This has been going on for 3-4 weeks it seems, I said, And why would we look at a piece of paper in a notebook unless someone told us to look because something had changed. She apologized much to her credit and said she’d put it back to pre Christmas dose. I thanked her and I returned to Archer’s room to relay the set of events and tell him he was right, it had been decreased and that it was fixed. I was taken a back by his response.

Archer said he was pissed. I was at first surprised because Archer is a very even keeled kid, with few expressions or displays of anger. Hmm. Pissed. Ok. Yeah.
I thought, That’s good. He should be. I was also happy that he said as much and named it. I have always wanted all my boys to fully feel all their emotions and to name them. But he had a curled aspect to his lip, and I could tell he was very upset.

I said, Yes, you can be pissed off.

There was a pause between us.

I then asked, Is there something else? How come it pisses you off?
I was curious.

So I asked again, How come?

Thinking he might feel the same way I had felt that they breached an understanding we had, I waited.

Archer replied very plainly, I’m pissed because had they told me, I could then have kept track and know when and how each dose affected me, and now I don’t know.

Wow. I thought that was really amazing and completely rational.
I told him so. I also told him I really valued and trusted his awareness and his advocacy for his own health. His mouth began to soften some, but he was mad.

I then said, Let’s begin again as of tonight, back on the same doses so you can track. Or, would you prefer building up to where you had been over the next few weeks and tracking it that way?

He said, No, he needed to go back to at least a week before Christmas dosage so he could sleep and from there subtract or add to get to the right dose at the lowest dosage level but still effective.
It seemed to be resolved. Once again, he showed his resilience. I also have to say that all our kids have this quality of being resilient. and I am happy for them as it does help a lot in life. Think of the times when something happens that doesn’t go your way or someone hurts you or lets you down. You get upset, or mad or you cry. That’s all good. But then you get back on your feet, right? And you keep rolling on. That’s what Archer is doing and I suspect he will do for a long time. He will keep rolling on.

We thought all was back to our homeostasis. But then a new attending doctor was on call and told me she could not authorize going to the old dose. Oh brother. But she was very communicative and I liked her. I explained. She said she could call Archer’s pulmonologist to be sure, and I said that was fine and a good idea. So, the next thing I know I have a call back from her that our Pulmonologist said No. She relayed that a small increase would be acceptable but only incremental and not the pre-Christmas dose. That made no sense to me since I had already called Archer’s pulmonologist to apprise him earlier in the day and seek his blessing which he gave. We are not fools at this juncture both in safety and in relationship and in hospital politics. Of course I had called him earlier.

That said, even doing all we think we can in the system is still not enough it seems. So, I relayed to the attending very candidly that I had already spoken with our Pulmonologist and what she said did not square with what he had told me. She asked what time I spoke with him. While I did not like what she was relaying, she was perfectly pleasant and indeed I like her and probably would like her a lot if we saw her more as she was not only communicative but she was also interested in Archer, engaging him in a conversation about lacrosse when she learned another one of Archer’s lacrosse coaches was waiting outside to see him. Anyway, as it turns out, she called the KKI JHH on contract pediatric pulmonologist, not Archer’s pulmonologist. She didn’t call the pulmonologist on the Archer Strong team.

That stunned me and didn’t stun me. Thank goodness we now have a hands-on adult pulmonologist for Archer who was with him by his side for his first 30 minutes off the vent a week ago now and who dedicated the next 2 weeks to be at Archer’s bedside watching him when he’s off the vent etc. and who has seen him regularly and who is responsive to texts and has real conversations about Archer’s care in a thoughtful and responsive way. Thank the Lord. What a blessing this man is.

Anyway, I said to her, Can you please check the records to make sure the pulmonologist of record for Archer is noted. She said it was not. I really hope it is now.

I knew there was no reason for it not to be as earlier in the week, we had very good news delivered in person by the medical director who came to visit me to let me know he put through privileges at KKI for our pulmonologist as we had discussed pre Christmas and it all went through. Yippee! I hugged him. I really do like that man as it is he who listened first. So, Archer’s adult pulmonologist can now come to KKI whenever he wants to see Archer and whenever Archer needs to see him, and he has, paving the way for Archer’s successful weaning, and, as we see it, ability to engage fully in rehab.

And so it was, just late yesterday afternoon, while Archer was sprinting a full 8 hours moving into 10 hours off the vent!, the doctor and I were talking about what the next three weeks might bring since Archer is doing very very well. Today, our doctor said KKI might want Archer here longer into February. We shall see. But if he does well as it appears he is and we are conservative to be sure he is stable off the vent, then February 1 or the first week to go home still looks really good. We shall see. We’ll be open to more time if we can be sure to get some good teaching. That is a story for another day.

I just had to thank our pulmonologist again for being there as there were only two times ever (upon arrival and the 3 minute stop in pre Christmas to say no you can’t go home) that any pediatric pulmonologist for KKI had ever visited and watched and examined Archer. We just knew Archer could go off the vent if a pulmonologist was eyeballing him on a regular basis. It’s just so darned important to have a doctor who knows you/your child, sees your child, preferably is interested in your child and who is available and accessible by phone. I was again grateful. After he and I finished talking about the tentative discharge plan, he subsequently went to see Archer in the gym to see how the sprinting was coming, and I left the hospital for Dutch’s basketball game.

So, we envision that Archer will do 10 hours and then 12, then 18, and then 24. And we would like to see him rehabbing and going about his activities for a solid two weeks to brace against any trips to the ER etc. We are on the home stretch for inpatient rehab I feel.

While I feel a sense of wonder, I also feel as sense of caution. Archer Senft is beating the odds right now with his lungs. It has almost felt like a good and evil battle. Let’s make sure he has all the lung support the needs.

Of course, it is understandable that Shepherd would have thought that he could wean in 5 days with his C5 break, but the ASIA score had not been assessed and as it turns out, the way that his injury happened with the salt water and drowning has presented many difficult challenges that were not originally accounted for. Those amazing beautiful lungs. We do not want to take this sprinting off the vent now for granted in any respect. While I felt it at an almost cellular level, that Archer would breathe off a ventilator, I may not have known like I knew, nor may he have known like he knew too, had it not been for what happened in the three days at Shepherd before flying to Baltimore. Those amazing days in Atlanta where Archer tasted for one hour each day what it was like to be off a ventilator breathing on his own were huge for him. Those two 60 min experiences and the one 40 minutes, they are part of the Creative Miracle: we were given a glimpse of what was possible.

And we held that glimpse in our hearts even though the other doctors did not believe. It’s OK, they were not there. They did not know like we knew. And try as we might to convey it, what happens in one facility just does not carry the same weight in another. Or id didn’t line up with what they saw, which was a boy regressing quickly for lack of a good pulmonary plan. We have a good plan now. His pulmonologist and we together do not see any reason to change up his propantheline or the care right now. Let’s see what he can do on his own, how much extra support he may need at night in the hospital and at home and take it week by week.

What a different place we are in now. Let’s all breathe in how wonderful it is, how glorious it is to have a care plan that is working, with a growing team of believers.
We will build around Archer a strong cabinet of advisors, Medical Arch Angels, the Raphael variety, who care for those who are sick to give them the life they need. Archer’s team thus far that we are putting together includes: Pulmonologist, Spinal doc, Physiatrist, Occupational Therapist, Physical Therapist, Powerchair distributor, ENT, Neurologist, Endocrinologist, Urologist, Osteopath, Dermatologist, Nutritionist, Behavioral Therapist, Accupuncturist, Massage Therapist, healers, Nurse Coordinator, those who orchestrate, like good attendings, and those who help us with equipment like his power chair rep, supply rep, and pulmonary equipment rep, and a really good primary doctor. We still need a good Trauma Psychologist but KKI says we need to wait til discharge as we can’t bring one in. I would find one anyway but Archer told me he is doing ok now and that he is ready to talk about the drowning. I said he could talk with the behavioral therapist; he said, No, I think I can talk with you.
So we will do that.
We also have to wait to discharge for more home teachers. Anyway, it’s quite a team, including a really good primary doctor. On that note, we had another breakthrough as well last week, as if the energy field began to widen, literally. Honestly, it just felt like flow was coming back on line.

It went like this. KKI needed us to list for other purposes including discharge preparation who Archer’s primary care doctor would be. I thought about his pediatrician whom we like very much, but we have only seen her when the Children got their healthy shots and for required physicals for school exams, and for annual quick skin checks that I schedule just because I want to stay abreast of skin spots that may show up like freckles and moles since as a family we are in the sun so much as we love the beach.

Billy and I felt we knew whom we wanted as primary doc. So we listed him. We texted him and he got back to us ASAP, another best quality in a doctor. He said he would be honored but he’d have to check on the pediatric aspect. Honored. Isn’t that amazing. We love his man anyway, but he continues to endear himself in our eyes. But the main reason we knew it had to be him is because he and Archer go way back, to days of youth, baseball coaching days and walking around Canton exploring Polish food and attending Polish Mass. We know he loves Archer very much and Archer loves him, since he was a little boy. Aren’t we so fortunate.

Well, KKI got back to us that we couldn’t use him since he was not a pediatrician. No, we could use him, would have been a more accurate statement, if he got approval. Well, he did. The path is cleared. It was another moment of celebration.
He’s a part of Archer’s Army, and we are surrounding Archer with expertise infused with love and inspirational thinkers.

So I came to deliver the good news to Archer who was on the stim machine working his biceps in the gym.
Guess what? I said, I’ve got some really good news for you….
After I told him, he said, Awesome! That’s really awesome, Ma.
Our case manager who was with me and whom I like very much because she gets the mission now too, said to Archer, Yeah, Archer, your mom is awesome. She does a lot of work for you.
I laughed and said, Archer is the one doing all the hard work here. He’s like…the big strong race horse and I’m just the little pony trotting along side to keep him steady.
Archer bowed his head like he does in a sort of swaggish sweet way and said, No, Ma, you’re the jockey.
And he added, The jockey, the trainer, and everything else.

It was sweet.

Still a teenager. But still a sweet boy.

But the moment was not to be too sugary as the lead doc from the outpatient joined in as she was doing her rounds and we are very friendly and can’t wait to be in outpatient with her. Anyway to Archer’s jockey etc comment, she added, And the one who cleans up the you-know-what around here.

We all just laughed. It was just easy and nice.

Everyone knows Archer is on the up and up. Yes, it required an entire different team, but to KKI’s credit, it happened and it happened here.

We feel very blessed and with caregivers who will inspire and be inspired, who will have Archer’s best interests at heart. At heart. That is the place, the only place, where real breakthroughs happen.

And thinking of heart as well as this new little spate of cold weather, this has ignited. Archer’s reminiscing about hot cocoa. Archer loves hot chocolate. He loves it so much that for a few or so years he would order it wherever we went to determine who had the best hot chocolate. Very Archer. A connoisseur. Turning something he loved into a study. He would order hot cocoa even in the summer.

So, if you were to ask him, he’d probably say that the best hot chocolate he ever had was in Grand Canyon. On one of my trips to work with the Hopi Indian Nation over the many years I have out west, they invited me to bring my sons. That was very special. So, I returned the next spring with Dewey and Archer. They were old enough to go and young enough that they could miss some school and it would not interfere with academics or sports. It was a meaningful trip as the Hopi shared with them special treats and took them to special parts, secret parts, of the reservation that most do not see, while I was elsewhere doing conflict transformation and mediation work with various clan members. At the end of that trip to the Res, the Hopi instructed us on a wonderful route to take in and around Grand Canyon, and we did. What was not very Hopi like at all but something I had wanted to take the boys to for another important American experience was to get a reservation at and splurge, while inside one of the grandest parks on earth, at the famous restaurant there that overlooks the rim. It was April, warm and summery, our clothes were light.

As we were seated in this famous restaurant intended to bring back days of the West in it’s 1880’s height of the gold rush and prosperity along with beautiful murals of Native American customs including Hopi, Archer asked the waiter who was dressed in black cutaway coat and tails, softly as his saucer eyes got big and round, I think he was about 9 or 10, if they had… hot cocoa. Hot cocoa? The waiter smiled, Oh yes.

And what do you think came with his chicken fingers and French fries order as we sat at the white linen clothed tables but a personal silver urn, yes, a silver urn with a long graceful spout, full of hot sugared milk which was then carefully poured into a beautiful white china tea cup, in the bottom of which was resting a large chunk of chocolate. As the waiter patiently stirred the two together with a silver spoon, Archer’s eyes widened as he stared at the chocolately concoction coming to life. Next, the waiter then presented with a large silver bowl brimming with fresh whipped cream which he then generously ladled, sparing nothing, into the cup and on top of the chocolate milky drink. I will never forget the delight and mesmerized look Archer had as he watched that delicious drink in the making. It’s probably these experiences that have Archer the good cook he is or it was perhaps his already developing interest that was all the more whetted, either way, it was a treat for him and for Dewey and me too as we couldn’t believe it. Whether it was the presentation or not, Archer to this day will say that the best hot chocolate in the world is in Grand Canyon.

So, the hot cocoa was the topic a couple days ago in the spine gym with his physical therapists. Archer told us that he had some cocoa, brought by an angel friend who is coming to KKI during the lunch break to converse with Archer in Spanish to keep up his Spanish skills for school. He asked me if I would make him some. His OT commented that it sounded like he liked hot cocoa a lot. Archer and I looked at each other and laughed and said in unison, Oh, yeah!

I then said, Tell her, Arch, where you think the best hot cocoa is that you’ve ever had.

It was so great, a moment. Archer spontaneously did one of his Archer-like moves, where he hangs his head low and then turns it up with his mouth at a sheepish angle and says, The El Tovar.

I don’t know how he remembers the details of names and such but he does.

Right, I said, I had almost forgotten the name of that wonderful famous restaurant at the southern rim in Grand Canyon. The El Tovar. Oh, yes.

And he then added, But don’t forget the frozen hot chocolate, Ma. Remember? At Serendipity?

That was another Easter break when we ventured up to NYC with some of his brothers, maybe 4 years ago, when they were 9, 13, 15 to go to St. Patrick’s Cathedral for Good Friday and then lunch and play. We walked all over tarnation that day.

Right, Serendipity, of course. I almost forgot that name too. I said to Archer, I remember we waited a crazy length of time, like 3 hours to get in.
Archer corrected me, No, Ma. We waited in line 4 hours.

Archer then looked at his OT and said with a confident smile, Some things, shall we say, are just worth waiting for.

Very Archer.

Some of you might have seen something that Paula found that Archer had made a couple years ago about his love of hot cocoa, and it would not be right to say that Billy can brew up a cup of the hot sweet choclately stuff himself. We hadn’t seen the little video he did until this accident when someone found it but here it is if interested.
Https://www.youtube.com/watch?v=MDIRasOHhHw

So, there are these moments when I feel Archer has been preparing spiritually for this journey he is on right now.
Who knows. Life present itself to us and we just have to see what is in store.

Since we do love food and I want you to know we are well, I want to share one last thing with you before I sign off. I do have a lot more to tell, but this is plenty for today.

We found a ventilator supply company we like for what may be a long relationship at home depending on Archer’s needs. They were a company I was introduced to while at Shepherd. They are located in the south and haven’t done business in Maryland before, but do now. That’s good. They were amazing for us because it is they whom I called in a panic when I found no other relief or assistance from other local or national vendors on the list provided by Shepherd to get a ventilator so Archer could come home for Christmas. When I called the rep I had met, whom I could not forget as he left me with a gift of a hose, the same type of hose attached to Archer’s trach that allows him to breathe. His parting words were, I want you to take this hose and all it’s parts apart and back together again so many times you could do it in the dark and with your eyes closed. That left quite an impression I must say as a man who lived and breathed his business. A believer. I liked him. SO, when I called him and explained our situation, he said they would fly up here. So, they did.

Flew in from ‘Bama. So, last week, while he was here, I wanted to go to our house so he could see our set up for Archer and he could show me all we needed to know with our home system whatever that may, we had planned on 2pm.

It had not been so easy having KKI accept our choice of vendor as I was told since the company of our choice did not carry the brand and type of ventilator KKI used, they would not accept them. But that didn’t make sense to me when it is our choice. And, this company was good enough for Shepherd, so much so that they allowed him to come and educate me and frankly sell me in house so that told me something positive, and I liked the guy;s belief in his product. The vent is the Trilogy. It’s not used by Shepherd either but is clearly endorsed by them so I was not offput by KKI’s fear that we had the wrong brand. And, I recalled that the Trilogy vent had top consumer ratings, was about 15 pounds lighter than the model in the hospitals, used only one tube instead of two, and was thus lighter for Archer around his trach. Those were important features to us. And, the company would provide us with two, so we would never be without a ventilator in the event one had a problem. It was about 2pm and he had been training me and showing me the settings all morning and through lunch time on the new Trilogy ventilator both without Arch and with Archer as we transferred him back on the portable and the one in the room and so on, and I used the new inexsufflator machine he brought, and the portable suction machine. We needed to leave, and I figured he was hungry. On our way home, we talked about Baltimore and we stopped at Eddies. I was getting Dutch a sandwich since he went straight from school to play practice and from there to basketball practice. No time to eat, so I promised I would drop off a sandwich. Dutch loves BBQ so, I ordered 2, one for Dutch and one for our rep from the vent company.

We set up Archer’s room and the first batch of supplies and drove back to KKI. I went to find Archer working in the spine gym. I mentioned that we had stopped at Eddies. Archer questioned me somewhat incredulously, BBQ?
I said, Uh huh.
Arch continued, That’s a bold thing to do, Ma, for a guy from Alabama.

Hmm, I said, Maybe. But, I told Arch, he reported that it was good. Arch then said, Ma, hook him up with some Berger cookies.

I just loved that Archer is really engaged again in life. Our banter is easy, and the fact that we now have banter is part of the unfolding of this journey. He’s come a long way. And we have a long way to go. But the now is very sweet and I don’t want to forget these moments of life that are very pure and without one ounce of forgetting how blessed we are, to be alive. God, Billy and I were saying, had this happened to Archer a mere 15 or so years ago, he may have died and not come back to life. Timing.

Archer is getting a number of requests and certainly encouragement to draw or paint again. It’s been a curiosity to me why KKI has not used the Mobile Arm Support (MAS) at all really in Archer’s rehab when it was quite central at Shepherd. Rightly or wrongly, it’s the only way Archer can, at least at this stage of recovery, attempt to draw or do anything with a stylus or pencil or charcoal in his hand splint operationalized by his bicep and the tension of the MAS acting as an arm to give him leverage. It’s critical that Archer has the ability to move his arms in ways that he can move a stylus with enough precision from his biceps that he could swipe a computer screen to open it, or hit some numbers or letters on a computer screen. While we are really into voice the last couple weeks, that therapy has been brought to Archer by outside technical friends. So, we have doubled our request to ask KKI to use the Mobile Arm Supports, on both arms. It was wonderful when OT/PT began using them and I really love Archer’s determination. Here is a picture of him trying to open a computer screen that required his password, with help from the double MAS.
Pretty cool, eh? Yes, he’s back to base line and now about to leap, I just feel it.

IMG_1158

All that joy was tempered later by Archer’s telling us that he wasn’t sure he wanted to do art anymore. He said he couldn’t imagine being good enough again. I felt my heart breaking for him. He looked at me and said, Ma, you weren’t there when I did that snail and landscape.

I said, Arch, I know, but they were fine. They were good.

He said, No, Ma. I cried. It’s over.

Oh, Lord. I just can’t believe he said that. It’s over? Ok, Maybe. Maybe not. That’s what I told him.

Let’s all imagine the kind of love that Archer has for art surrounding him and beckoning him to try again. Begin Again. Like Fr. Bruno said. In time. In God’s time.

If it’s pride, he will need to take a hard look at that. He’s also young and will have many interests he will move in and out of. And we will support whatever interest he emerges with. I do think he is really moved by the children who write or make cards and reference his artistic ability. He will rise again I am sure. I ask Mary to just keep her loving arms around Archer all the time.

You know something else that is so moving. A grade schooler had a birthday party and instead of receiving gifts, she asked that the children (their parents) instead give a monetary donation to Archer. Isn’t that just amazing. The children doing this… they are very self-less. It’s quite noble. Truly it is. And we are very appreciative.

Archer told me he had dreams of himself walking. Isn’t that great. Please keep dreaming for us. Please keep breathing for us and cherishing your breath. You have created the energy field for what is happening with Archer. It is awesome.

It is the new year to Begin Again. I think we will have many. We are in a good place right now. It feels great. We will get an x-ray and see what happens. Archer brought up a few more howlers but not like that 7 inch monster. I would bet the farm that his adalectisis in his lungs has resolved as that was the adalectisis. That’s my belief. We are getting rid of the old, and the new is sweeping in like fresh breath.

Thank you, God, mother Mary, all the angels and saints, and to you, our brothers and sisters for all that you have given us. You make such a difference in our lives, in Archer’s life.

With gratitude

Amen.

Sending love


January 3, 2016

Archer Senft
Family & Friends Update
Sunday, 1-3-16, DAY 153

Happy New Year!
Archer Senft will walk someday.
2016 is going to be full of Begin Agains.

It was as if Archer returned a different person after our time at home, different in … his energy. He is stronger and more in flow. He became animated, He beamed, He is so full of light.

And, he is talking regularly and easily! Yes, his own voice, still a bit soft but very much his own voice, his old self coming through. And, as he would often talk with his hands pre injury, his biceps try to move his arms spontaneously and it’s really wonderful to see. It’s as if the animation of the conversations with multiple people involved in the conversing has energized Archer to do what he normally would do, and while his body cannot (yet) move his arms the same way, it is trying in a spontaneous way that is building muscle with each try.

So, what happened at KKI? A lot!

It’s as if there has been a true breakthrough. While still a bit nervous, I feel their confidence in what has happened. They can see it, feel it and taste it. The fearful doubting Thomas has proof.

We are making plans to come home for good.

It’s amazing.

Every day since Christmas has been packed with re-establishing a new normal baseline at KKI now that we are on a different path: we are not going to be kept in a holding pattern, but we are going to move actively towards weaning off the vent, and help Archer achieve his main resolution: coming home off the vent.

We will not settle for being discharged to wean at home either. Can you imagine? It’s true.

In order for Archer to do outpatient rehab at KKI, we had to shop our insurance policy and spend weeks on that and decide by December 15. In this day and age no one has a copy of the actual policy you get. Honestly. It takes a lot of work and effort to get a hard paper copy and, what it says is not what BCBS says it says, so here we go again. But the bottom line for us was that I wasn’t going to waste any time caught in more institutional gaps about getting Archer a ventilator since that is what KKI’s first doctor had told us we needed to do in order for him to be released on more TLOAs. (Therapeutic Leave of Absence). KKI was calling national companies who were saying it would be a couple weeks. And KKI wanted to make sure the companies would provide their kind of ventilator. Additionally, Archer uses a certain PST vest which is not covered by insurance and they wanted us to arrange for that as well. That just didn’t sound all together right to me. And, why do we have to wait another 2 weeks before we can bring Archer home again, when I shared that we wanted to bring him home for New Years too.

So, I made my own calls, including to a few vendors who had come to visit us at Shepherd. I had kept them in my phone and the DME coordinator at Shepherd is terrific for helping me navigate to some good folks. So, while it was a bit arduous to locate and make sure Maryland Blues insurance accepted a company I liked in Alabama, as they were willing to fly here asap and also to provide us with two of everything since I had heard horror stories from other families about the terrible service and having to wait days when something went wrong with a vent or weeks when something went wrong with a wheelchair. I so believe in relationship that if you have a relationship, and they care about you, and you care about them by being grateful for their help, you can surmount obstacles much easier. So, I renewed my earlier relationships that I hadn’t thought I’d ever need again. KKI had never heard of the companies and had never heard of a company flying to a patient or providing two of everything, but why not? It just makes sense. I shared that in order for me to go with them, we had to be assured of good service, and how might we have that assurance. The rep and I came up with two of everything.

I was on the phone quite a bit with Blue Cross/CareFirst and in those conversations, I learned that our Durable Medical Equipment coverage was for 100% if preapproved, but after 12pm noon December 31, our new plan, while it covered our needed outpatient at KKI as well as at Shepherd as I plan to take Archer back for the Day Program in the summer, the plan only had 80-20 for innetwork/approved and 60-40 for out of network. So the scramble to have our vent company that could provide what we needed approved was in full swing. Then, it dawned on me, oh my Lord, what about the scrip for Archer’s powerchair, and his bed? Had they been submitted by KKI and the vendors yet? They had been at Shepherd but KKI asked that they all be put on hold and then cancelled while they figured out what Archer would need. OK, but… were they submitted?

I spent December 28, 29, 30 in a scramble with calls, meetings with KKI case manager, getting Letters of Medical Necessity from the doctors and the PT and OT, coordinating with the vendors, and on it went to ensure we were in. Why, well, Archer’s new chair that you saw in that short video clip costs around One Hundred Thousand Dollars. It’s true. It’s absurd. So, $20,000 uncovered is a lot for us to be concerned about when it’s a mere filing on time deadline. And his bed, another $30k. And the other stuff is not deemed medical necessity.
Someday, I will take it up I think with insurance companies, but just to give you a flavor. Archer’s shower chair is $2495. It’s a tilting chair on a metal frame on wheels. It is not covered by insurance. Why? Because a shower is not a medical necessity. A quadriplegic they say can be bathed in bed with a sponge bath. I don’t know about you, but I can’t imagine staying clean and fresh relying only on a washcloth and soap while I lay in bed for weeks and months and then years, not empowered in any way to get a tub bath or shower. And, as for Archer’s dreaded bed sores, water or damp clothing is the enemy, and skin that is not clean promotes problems as well as you can imagine. So, my stance on shower chairs for any person who is bedridden is that they are a medical necessity.

And as for the electric overhead hoyer lift in tracks mounted to the ceiling, which is necessary to get Archer out of bed and into his powerchair and back into bed again at the end of the day, well, you already know how Archer was kept in bed in the PICU because they didn’t have a way to get him out, even the manual hoyer lift they had, granted it was for children and not adults, did not have enough leverage in it for Archer’s long body to not sweep the floor. Again, insurance says that is not a medical necessity either.

So, that is how the last three days of 2015 were spent, plus ongoing daily rounds at KKI, and the oversight of Archer’s room and the home accommodations.
The new doctor assigned to us has been great. The rounds were easy, collaborative, our requests were all met. It was as if the Red Sea continued to part. It really felt easy.

We had been asking for Archer to be weaned off the meds. That is underway.
We wanted a consult about his feeding tube which hasn’t been used except for additional water needs to assist with reducing mucous. That appointment is set for this week.
One of our nights we had nine wake ups to alarms we didn’t recognize. 9 times between 11:30pm and 6:30am makes for a difficult night, especially when all 9 times were false alarms. So, we made agreed in rounds to change the placement of the pulsonox again, and that the drip bag they had begun to use for Archer’s humidifier, which was new and we had never seen it before but a new nurse put it on, would no longer be used or if used, would be checked and renewed at midnight. Things like that. It’s really always just trouble shooting. But this time, as exhausted as I was and here we go again with a night nursing staff that can’t respond as well as daytime folks, I felt it was ok, that I could say what happened and there would be a response rather than a stonewall. The breakthrough of Christmas was carrying over.

And I have so many things to tell you about Archer’s progress.

But the funny part I will tell you now is that after all that diligence last week, putting scrips and vendors in place that would have taken two and half weeks to three (because of the holidays they said), was in place and what do you think KKI did?
I asked for a copy of our weekly schedule as it was not in the room at the end of the day on Saturday as it usually is. We had to ask for this schedule when we arrived. It took three weeks for us to get and they are not accustomed to doing a weekly schedule. They tape a schedule of the next day on Archer’s cabinet door the night before. It’s really hard to run a life when you have no schedule except what is told to you the night before as the schedule will contain doctor’s appointments, the times when he goes by ambulance, the times when he goes through the tunnel as he did the first time, and the times when he goes down the street, yes! This week, Archer was scheduled for a Dexascan (bone density scan) at the KKI outpatient clinic. To get there, we rolled/walked down two blocks. It was wonderful! We were outside again! There was sunshine and we stopped in a patch of bright sun and just soaked it up outside the clinic. Once inside, Archer was able to have an up close and personal on-site look at the room we had chosen through pictures and a tour I took last summer for where his outpatient work would begin this Spring. So, anyway, I digress but that itself was another one of the breakthroughs as we rolled easily down the streets of East Baltimore!

Anyway, there was no schedule for the week posted. So, I asked the nurses’ station if they could find it and let me know. The nurses on the holiday shift didn’t know how to obtain a weekly schedule and then said it’s done by PT/OT so we waited. We just got it and it shows that Archer will have his PT’s/OT’s/and the other T’s tomorrow and Tuesday. A/K/A. Discharge January 6.

I rather like the idea of January 6, it is afterall the Epiphany. But, our new doctor is away for two weeks, we haven’t yet been able to put in play our vent weaning plan, and it is just so curious to me how a mindset on December 22 that Archer could die if he is allowed to go home is now, we will send him home January 6. Since this isn’t our first rodeo anymore, we sadly won’t be going home on January 6, as it is not yet possible or prudent. That said, we are eager to get Archer home as you know and we set up a meeting today with our adult pulmonologist.

Another path opening. It was a very good meeting. The dear man gave us an hour of his time as we covered about 10 topics related to Archer’s lungs and vent strategy.. The upshot…. Drum roll…..
We will start to wean Archer off the vent tomorrow, January 4 at 5pm.

Prayer Warriors and all of the Arch Angels, we will need your love and breath and intentional prayer tomorrow especially and for the next couple of weeks.
Archer is very ready.
Archer may also be afraid.
It will be a huge adjustment for him.

But this is what Billy, our pulmonologist, Archer and I are all in concert about: it’s time.

We have new test results and I want to share them with you. Oh my! last week was so very busy right after Christmas and before New Year’s Eve as this was happening as well, each with a trip to the JHH via ambulance.

1. Archer’s xray of his diaphragm is now enervated. Both sides! Remember how the right was not and the left was doing all the work? Well, now both are moving well. This is huge. It also means likely no need for a Diaphragmatic Pacemaker (DPS).
2. Archer’s second CT scan since PICU this past week showed that the debris in his lower right lobe of his lung was almost gone. The lower left lobe still had atelectasis, and is collapsed. But we decided to hold off on a bronchoscopy until we see how he does with the weaning and on the continued lung clean out regimen that we have been happy about since the JHH pediatric pulmonologist put it in place in the PICU and for our return to KKI.
3. That same CT scan still shows the 2-3 blebs and no one has any explanation for where the other 20 went. None. Two pulmonologists have said that blebs that a child is born with really do not go away. Blebs that a child acquires from an injury have a chance of going away when the child is young, under 7 years, and it can take 3-5 years. A child Archer’s age is likely they do not go away. But they did! We know, don’t we! Of course. It’s part of the Creative Miracle. To remind us of what is possible through God. It may not be humanly possible or medically explainable, but all things are possible with God.
4. He has had a cuffless trach tube now for almost two weeks and is talking well and tolerating the air. It is time.

We are so thrilled for him. We also know the homeopathy we began after the PICU is working, and of course the aromatherapy I renewed in his room, especially, the sweet fragrance of Frankincense, how apropos for the Epiphany. A word on all our healers and people I turn to for grace and wisdom outside the traditional medicine field, but what I might say is the true traditional medicine field. I am so very grateful for such wise people I have had in my life pre Archer’s injury, but their love and care and advice for Archer in each step of recovery has been magical. Those who truly know ancient forms of healing and plants can be very wise and part of the healing circle. They also very much are with me in spirit in believing Archer is on a divine path and we are all part of helping him realize its potential as it naturally unfolds and emerges with our help.

When we met with our pulmonologist today, we had just come from Mass where we celebrated the Epiphany, when the wise men travelled weeks and months following the star to Jesus. Can you imagine that? They carried the most precious and expensive gifts they had, gold, frankincense and myrrh. To give to a baby in a barn surrounded by animals and hay, in his loving young mother Mary’s arms. I just so love picturing this. A day of new beginnings for us all. After a long journey.

And so I asked him if he practiced any faith. He said he was Jewish. I smiled. I told him we were celebrating the Epiphany, you know, when the wise men came to Jesus and then had to escape Herod. And I added, Jesus of course was a Jew and loved the Jews. We smiled at each other. I told him we also believed in miracles and the blebs was one of them. He listened carefully and thoughtfully. New beginnings. We will be a good team. I feel Mary’s arms around me and you right now as I say that. Don’t you just feel her love? Hers are such loving arms, big enough to hold all of us, gentle enough for each of us individually when we need holding the most.

So, tomorrow it is as you know. We will start with 30 minutes and see how Archer does. We are all on the same page that it is not as likely that he will be as successful if we attempt weaning off the vent at home. Our pulmonologist committed to being with us himself the first two weeks and we will take it thereafter. Billy and I requested a night RT who will watch Archer’s monitors and breathing carefully as we are not convinced his ventilator high settings are working properly or as intended, as it’s our theory that his rests of breathing, send a false signal to the vent to push air harder and faster than Archer actually needs. We might be wrong, but that is our hunch as we sleep in his room every night on the sofa bench and have been wondering about the very loud vent sounds.

And, back to our out of state pulmonary supply company, they supply a Trilogy ventilator, which KKI wasn’t going to approve because it’s not the same as the one KKI uses. I told KKI that the Trilogy was not what Shepherd used either but that Shepherd approved of this company and our RTs in Atlanta had told me we will like it a lot better because it is much more consumer friendly and lighter by about 15 pounds.

As we discussed it today, our pulmonologist agreed the Trilogy is fine and said he likes them very much. And so did our KKI RTs. So, in two days on Tuesday of this week, we will meet with the rep they are flying to see us who will bring us the vent and train us on the Trilogy, and we will begin using it at KKI, per our new doctor, until we go home. Sounds like a good plan to me. Things are a changing.

It’s just so amazing to me what probably doesn’t happen because someone did not ask. We have a lot to learn we know. And we are learning a lot along the way thus far. If it doesn’t sound right, ask. And, for that matter, ask about everything. It is so very very important that anyone left in a hospital for more than 3-4 days has got to have someone else by his or her side 24-7 watching everything, asking about everything. Too many things can and do go wrong. Autopilot, the way things are done is often not the best way. I am really really questioning the whole big picture on best practices, as if there is one defined set. I think best practices should begin with what guides the health care worker by way of philosophy (do no harm) and then the next best practice should be: know the patient. This is virtually impossible when nursing care and other techs are rotating constantly so that the patient rarely has the same staff on any frequent basis. Best practice: expand and deepen your knowledge and know there is more than one right way to do anything.

So, it can be easy to fall into despair when you rely on the institution and those in it. And as I think of it, the adoption of Fr Bruno is so very apt since his life’s work was about hope and not falling into despair. I believe it was meant to be that Fr. Bruno will guide us through this medical maze, with the beacon of light that is hope. Isn’t is powerful to remember that he or she who hopes for everything shall have everything. I love that. I have to remind myself of that when that despair wave slams me sometimes.

Like it did Christmas night. Perhaps it was just a bodily let down of a magical day in its familiar rhythm. We had had the wonderful breakfast smells from the kitchen, Christmas music on the speaker system and the sound of opening of presents and exclamations and laughter. What I could close my eyes and wait to hear every Christmas morning when Santa came and delivered presents. For anyone who ever doubted that Santa Claus is real, well. Let me tell you. Santa Claus is very real. St Nicholaus and his spirit live on. What else could you possibly call it when, a home like ours, covered in dust and construction, and furniture and paintings and lamps piled in a corner,and brown paper lining the floors and not a box of ornaments or other Christmas cheer had come out of storage is all of a sudden in a day or two transformed by cleaning angel elves and other Christmas light and wreath angel elves and by a Christmas tree elf who came in a put up a tree, and other angel elves who wrapped and delivered gifts for all the Senft children…. Santa Claus is very real. The Christ in Christmas is very real.

And, what also made the celebration complete was one of my Jewish angels who offered to spend Christmas Eve by Archer’s side at the hospital with Archer on a webcast simulcast to all 16 of us around the dining room table and then singing Christmas carols and reading Twas the Night Before Christmas. It was all about unity and love. And anticipation for Christ’s birth and for Archer’s arrival home.

And the angel who provided our transportation in style taking time out of his day on Christmas to do both ways for us. We are truly blessed. It felt very blessed. Even the ride home when Archer’s ventilator set off an alarm we had not before heard: Low battery. And after about 1-2 minutes: No power. Breathe. Stay calm. Archer was fantastic. We said, Arch, it’s going to be Ok. We’ll be there soon and we all know you can be off the vent if you have to be. He nodded. He was amazing. He never said a word. Then Billy and I scrambled to the far back of the elegant van ride to locate the power cord and box and figure out how to plug a three prong into the electrical system in the van. Voila! We did. By the skin of our chinny chin chins. It was quite a way to end the day, all is good. After all, we were only 12 minutes away. Nevertheless disturbed as we were and with no time to curse each other, as it turned out, the powering up we had done for a few hours during the day at home did not in fact power it up. New learnings for plan B. We’re becoming veterans. Archer is the trooper.

But the night after taking Arch back to KKI, Billy said he’d spend the night, so I came back home. And all I could do was go to bed and just ball, the raw aching sobbing. I just wanted to really. I knew it had been coming for while. I was so incredibly racked. Just wiped out. I was so happy Archer had been home. And I was so….what was I. Sad. Deeply sad. Very deeply sad. Loss. So into the night it went. Paula checked on me bless her. I told her I just wanted to be alone and I did. Although being held would have been nice too. But when you are in most need sometimes you say the opposite of what you really want because you are having to defend that very very fragile part of self. At least that is what I was aware of that night when she asked and then left. I finally fell asleep with my body just heaving little heaves like a child who cannot control their crying after a period of time. Maybe it will help. I think I have a whole lot more but I was finished for then. Nothing left.

I returned to KKI and the rest of the week was as I have shared a scramble. But back to the breakthroughs at KKI, we brought Archer home for New Year’s Day as well, again 10am-6pm, and it was another very wonderful day. And I did not finish the night crying in my pillow.

The TLOA came up so unexpectedly as I thought we needed to have our own vent in place, but KKI was again willing to let us leave with theirs. A wise move of course. We were grateful. But it was part of the new dawn and it felt good. Confidence building all around.

As I think of our van rides riding in style in the Mercedes Sprint van owned by one of our new friends who is a parent of a brain injured boy a year older than Archer, it occurred to me about how little we, who are not injured, realize what joy everyday kinds of life can bring to those who have lost their old normal. For instance, this Dad and I were talking about how his son would so love to go to a high school dance, but his fellow high schoolers may not think about that. So, whether a dance or a sports game or anything that is part of the high school experience, inviting along someone who is disabled is a real gift for them. A real high light. It might just be another dance for many, but a special dance for someone who is brain injured or whatever the disabled circumstances are. My eyes are really being opened to the humanity and to the goodness, the sheer goodness and good heartedness, the Santa Claus in every parent and caregiver who is at home with a disabled family member, and to every kind hearted young person or friend who reaches out. It’s a lot of work and I have a feeling ours is just beginning. No starry eyes here. But I’m still filled with wonder.

Our plan is that we do not want to bring Archer home until he is strong and off the vent. We want to try to get a sense of when that will be. We would like to bring Archer home each weekend we are still at KKI vent weaning and getting Archer strong enough to breathe on his own. Home is the best place and he will thrive. We just have to find the best stride. In a few weeks? End of January? Something like that I think for what is best for Archer.

Next step: a van. Insurance doesn’t cover that one either of course. He will need a van with a side lift, that he can roll onto and that will lift and hold his 500 pounds power chair plus Archer, who now weighs 136 after losing over 40 pounds. The lift then folds into the side of the van as we have seen them. They have an entire van show at Shepherd two days a month where you can go on the parking deck and check them out. We learned a lot. We now are ready to look and find here at home. We will begin that exploration this week.

Thank you for all you’ve done for Archer and for our family. Your contributions are helping to pay for the home accommodations for his room, and all the electrical and plumbing and generator and extra lines and ceiling raised and outdoor ramp etc. I am so touched by the generosity of my former clients and the sheer kindness of all of you and those we haven’t yet met. Thank you. We know we have a long way to go, but we will do it and it will be alright.

The rallying and unity of Archer’s Army has been essential to his life force. I hope you know that. I hope too that you feel that. As he is sustained and I am sustained, I hope you are sustained too as you experience with us the power of your collective prayers and your belief in what can be. Each prayer. It’s good for all of us. I believe there is a reciprocity of this kind of connection.

We need it because at times I really feel as if we are having to battle a darkness that doesn’t want Archer’s brilliant light to shine. He is going to give us something big someday. It’s just too uncanny the amount of obstacles and the number of times someone significant has said, For all my 11 years as a Respiratory Therapist I have never ever ever had a trach change as difficult, or For all my 27 years filing Social Security claims, I have never ever ever had an application that has been so difficult, or For all my x years, I have never ever ever ever had Y that is so difficult and on it goes with Archer’s situation and the things that we have had nothing to do with and the things we have. So, I know it’s especially important that Billy and I stay grounded and you help us. A lot. Your letters and stories and love continues and we are so grateful. So, we had another rejection of a claim for Archer and another thing we have to chase in the institutional system we are now in in so many ways.

Oh, but I do want to tell you two more fun wacky things that got sandwiched into last week too. Billy and I were on TV on December 27 about our book, Being Relational: The Seven Ways to Quality Interaction & Lasting Change. Yep! We were with Deborah Weiner WBAL Baltimore, and it was fun. She was her warm self and we hope to return. And we did a brief radio interview a few days later for New Years Day morning 6:50am! Crazy. If you didn’t hear or see them, you can google WBAL TV Being Relational. It felt good to be out and doing this. God is good.

Another New Year’s present to Archer but it renewed us so much was from one of our healer angels. Her 7 year old Godson was playing at her house and brought her what he had put together, from found objects in her home. Here is a picture.

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Isn’t it stunning for a young child who was doodling to do this? A gifted child. He placed the green Pray for Archer Strong wrist bands in perfect bands around the carved Love. The objects were in different rooms of her home. It is so simple, so beautiful and synchronous.

Archer liked it very much. We hope that he will be inspired to draw and create again. So far, KKI has not used the Mobile Arm Support at all in any recreation type of activity and we will continue to ask and hope Archer responds. Archer has not had a charcoal pencil/stylus placed in his splint around his hand now for almost 7 weeks. I’m not sure what Archer is thinking about that. He’s had to battle so many other things that we might just this week really be getting back to base line for where we had been. While it is still tinged with some umbrage, I want to shake that and replace it with gratitude for being back to baseline, and actually baseline plus all in a week since we went home. So, for Archer and his renewed art that is yet to come, please join me and think of something you find creative, a favorite picture, photo, painting, needlepoint design, surfboard design, chalkboard design, doodle. Something that captures your eye that you think is good design, good composition. Turn it around in your memory. What do you like about it? What makes it good design or creative? How does it make you feel? If it brings a smile or a feeling of awe or wonder, take that in. Cherish it. Really feel it in your heart. Breathe in that wonder and gratitude of the creativity of that piece or object you like. And now breathe out the air of inspiration. Doesn’t it feel so good to be in touch with our breath again. Breathe in the wonder again of the creative piece. And exhale the inspiration. Send it to Arch. Send it our way, and make sure you save some for yourself. We all have something in us that is drawn to beauty. We all are capable of inspiring and being inspired. Let’s do that for each other. Create some beauty this week. Allow yourself to be moved by someone else’s creativity. It’s a good way to start the new year. I think many new beginnings begin with the ability to imagine what might be, what might be that is good and beautiful.

Our inspiration for creativity often can come from looking back on what we know or are reminded of from the past and re-examining it, re-imagining it a new.

Like this past week. I know you will believe me even though I am not sure how else we fit in a basketball tournament but what was also part of all the zooey fast paced craziness of the week was Dutch’s playing in the three day Annual Msgr Lynch Memorial Basketball Tournament. Of course, I wouldn’t want to miss a game so I was there and it felt good. I was caught off guard, though, when the announcer, before he announced each player who would run to the court in formation as we all clapped and cheered for each, asked everyone for prayers…. in dedication to Archer Senft. Wow. That was so unexpected. So kind. I was really moved. The tournament began, but my mind wandered. It was one of those moments when I could feel the burning of tears and my nose hurting as I fought them back as I sat on the bench with all the other moms and dads.

Yes, Archer had played this same basketball tournament in 6th, 7th and 8th grades. Our other sons had as well. Yes, our Senft family had history in that gym at that school every year for many years the week after Christmas. They all wanted to play that tournament. They all love basketball. Archer loves basketball. I was flooded with the memories.

Archer had been named the All Tournament Player for two years in a row, and received the MVP Award when he was in 8th grade. Arch loved to play and dribble and dunk. As I sat there, I began to picture Archer when he was little on the basketball court: he would dribble like a bandit, his hands always large like paws, he’d be hunched over a bit. He was surveying. And then he would bolt through the kids and score, and sometimes not, or he’d fake pass to another player; he was always trying. He loved to play and score. And I could see him on that court in his green Cathedral basketball uniform when he got taller and faster and in more command of the ball and of his moves. He loved to play with his team. He loved the flow of the game as they passed to each other and set up and swished. And I could see him in his McDonogh uniform, even taller and more muscular and starting to fill out, even this time last year. It flashed in front of me like a movie I was making up in my mind. I saw Archer running down the court, he was so tall, and I saw him dunking, and I saw him with his longish hair in a sweat band, in the wind of his movement, as he’d gave hand signals to his teammates. He’s always been exciting to watch. He’s an anticipator and a leaper into action kind of player. Archer sort of lays back and then bursts. I could see him. And my mind wandered to the same moves, the same boy, the same athletic body for lacrosse. The same for soccer. And the same when he was much younger 5, 6, 7, 8, 9 for swimming and baseball, in the days before he felt he needed to choose one sport per season. I was so lost in thinking about Archer then on the skimmer board at the beach. He was so good at the rhythm for catching the end of the surf and skating fast along the wet sand. I could see him in all those moves. That one announcer’s dedication had me thinking about things I had not since August 5. I could see our son moving. I could feel him moving.

But he is not. It stings. I had to get it out of my head. I think the feeling borders despair actually. I do. But I mustn’t despair. He will walk again. I do believe that. We just don’t know when. I focused back on the game but it lingered that the vision of what I remember is so real.

It occurs to me now and I talked to one of my guides about it on New Years Day that it is real and it could be very powerful if we all envisioned Archer moving freely, walking, running, jumping, dodging, dunking, scooping, kicking, racing, whatever it is he is doing in movement. Think about how freely you move your body. Any movement. Really study it. It’s amazing. Because so much of the rest of your body moves with it. Cherish that movement and it’s movements together. It keeps you alive and strong. If we imagine Archer moving, we can infuse that energy into his cells. If we imagine Archer in action and we incorporate that into the Fr. Bruno prayer to pray for complete restoration, the cells in Archer’s body will respond. Afterall, things are happening already in his body. And some of it can only be from prayer as it is otherwise not explainable. So, Archer, moving and the feeling of being free in movement will aid things happening. I know they are already.

His right bicep is coming on line and getting stronger. So much so that the day after Christmas (yes, it was so very good for Archer to have come home because he literally returned stronger and different), he…. Another drum roll please meistro….spontaneously moved both arms and hands in a big motion as if he were turning the wheels of a manual wheelchair! Yes! It was extraordinary, and he did it with a big sheepish grin on his face afterwards as it had come about in excitement. I honestly do not think he had ever done it before and he was carried away in conversation. Here’s how it happened. A new and very faithful friend showed up at KKI as a surprise. He had been sending to Archer, via inner facility Shepherd email, a message every single day since we arrived September 3. Every single day this fellow spinal injured compatriot wrote Archer. Every day. And he had been trying at KKI to do the same but KKI does not have the same inner facility set up. Apparently, he wrote KKI and asked if they could set something up, but no reply. I asked on his behalf and showed KKI the letter he had sent me, but nothing yet. Hopefully they will put this in place as it’s a costless way for people to communicate with friends and loved ones, rather than having to post a letter daily. It’s a really easy feature to add to any website to post and the facility then copies it and delivers it with the mail. I digressed again. Back to the visit. So, this man flew to Maryland and came to see Archer. He had rehabbed at Shepherd a year or so before and had sort of adopted Archer I guess you could say, out of kindness and love, when he read about him upon his arrival in Atlanta. He had shared with me of course that he was coming, although it was the day of, so I was as happily surprised as Archer. It was good that I knew though so I could give the OK to the front desk guards. So, Archer was meeting him for the first time.

He entered Archer’s room in his manual wheelchair. You know it’s an interesting thing to connect a face to a name when you have had a relationship of substance without ever seeing each other other. I am not sure I had actually thought about what this man looked like at all, but it’s just an interesting thing. Archer and he and his wife and I talked and we learned about his injury, different from Archer’s in origin and breaks but connected at an almost soul level as a similar life experience. And, we talked about how it happened. For him, he had no memory of how it happened as he blacked out for days. He, his wife and I conjectured about her hypothesis as to what exactly happened, and I felt the Holy Spirit among us. Whenever my hair on my arms raises, it’s always the holy spirit passing over. I believe her theory is right. In which case it was a hit and run of sorts. Ah, the things we do when afraid. All of us, caught in the clutch of fear. It can cripple us. It can paralyze it. It can cause us to harm others and never take responsibility. It was a real moment in the room. The friend said, Well, I don’t remember any of it so….
Archer then said, I remember everything that happened to me.
The moment.

I waited as I thought sure Archer was about to say something, perhaps for the first time other than what he told me within hours of the burst break at the ICU. But the silence was filled with conversation by our visitors. If Archer has something he wants to say, he will someday.

But the most extraordinary thing I told you about then happened.
As the fellow Shepherd patient and Archer talked, Archer (with the power from his getting stronger biceps) lifted both his arm out to his sides almost parallel with his shoulders as if he were about to take off in flight like a bird. It was really extraordinary. Two weeks ago, he didn’t even have the right arm at all. It happened without notice, without our being prepared, without Archer saying, Hey Ma, look at this. He totally took us off guard. He then made the circular motion he would need if he were ever to graduate to a manual chair. It took my breath away. I think it took our friend’s as well.
I exclaimed, Arch! On my gosh! When did you start doing that? Do it again!
That’s when he stopped and looked as if he himself was surprised. One of those, What was that? kind of looks.
He began to try to do it again but he had to effort more mightily and the struggle was written all over his face as his brow wrinkles and his tongue goes to the side as he tried to do it again. It was not like the big free flowing one we just saw which seemed to just happen. Archer broke into this big grin followed by this, as I said, sheepish almost embarrassed or self conscious smile as he lowered his head and eyes.

He said, That was my wheelchair motion.

We all laughed and said, Alright!

He is so awesome. He is determined I know. His Shepherd friend and his wife were part of Archer’s Christmas gift for certain. Like the wise men visiting.

So, as I drove down to KKI on Christmas morning, on New Years Day morning, the JFX was empty. I felt like I was at the Indy 500. Th JFX is truly like a ribbon. I drove and the road felt expansive. I felt expansive. I drove fast. There was really no one on the road. It was open. I felt like Archer and we could go anywhere.

And we will.

One of the chief healing angels meditated and saw Archer leaving KKI on a brilliant emerald green carpet field flecked with black that was so luxurious and so powerful. That green to me is life. The first Archer Strong wrist bands were verdant green. It’s true that with the home visits, it has been therapeutic, it met it’s purpose. As I receive from one of my angels, Archer is renewed, and uplifted, and “newed”. It’s a new life, it’s a new dawn, it’s a new day! He will work even harder now, if that’s even possible…and his “coming home” is living inside of him, where HOME is many different levels, some he doesn’t even recognize yet…like his authentic self, or even more importantly his true nature, with all of the expansive holy qualities that are seeded in him.

I ask the blessed mother to wrap her arms around Archer all the time. And around me. And I’m asking her to wrap them around you and your family extra much this year as she holds us just like she held her son Jesus.

Oh my goodness, I almost forgot to tell you. You won’t believe what Archer did. There was a bag of gifts in his hospital room that I assumed were for him. I brought them home for the next day, Christmas. When Archer arrived, we had the gifts. I placed them under the tree. As I took each one out of the bag, each was tagged, To Paula, to Pete, to Dewey, to Dutch, to Mom & Dad.
Archer blew us away with gifts he had gotten for us, via the high school elves in Archers Army. He was our gift. But he brought more. We were amazed. The entire day was one of amazement.

I want to hold that and have a year of amazement, a year of light, a year of hope, a year of forgiveness, a year of mercy, a year of inspiration, a year of Creative Miracles.

We want to be in a place of inspired care for Archer to begin again. Archer is back to baseline and stronger, and I think ready to leap.

Happy New Year. Let us all begin again. Let’s have year of Begin Agains.

Oh my I almost forgot a delightful highlight. Dutch invited his Cathedral basketball team to come downtown to see Archer after the tournament. They had won and wanted to show Archer their trophy.  Archer carried that same trophy for his school a mere four years ago.  Here’s a picture.
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Such good boys and their parents to do that for Archer.
With gratitude

Amen.

Sending love

 

INFO ABOUT DONATIONS – In response to many requests, we added a Donate button to the top of this page. We are facing extraordinary costs for Archer’s care and rehabilitation not covered by insurance and we would be very grateful for any help you could offer. Any donation will NOT be tax deductible and the entire amount will go to the Archer Senft Special Needs Trust, donations will be processed through Paypal set up for the Archer Senft Special Needs Trust using the email ArcherSenftTrust@joinorans.org.
Thank you for your love, support and prayers.