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This Page has Updates for 2015 – For the Latest Updates for 2016 and 2017 –  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.

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. He remains in the intensive care unit at the hospital there for now.

 

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!

  IMG_0014   This picture was taken outside of The Food Market in Hampden, Baltimore on Archer’s birthday last month. Archer loves to cook and bake, so the evening was extra special!


LATEST 2015 UPDATE FROM THE SENFT FAMILY:


December 25, 2015 Archer Update Family & Friends Update 12-25-15, Day 144   A wonderful homecoming! Merry Christmas to all and to all a good night.   Amen. Sending love.     archerxmas


December 24, 2015   Archer Update Family & Friends Update 12-24-15, DAY 143, five weeks and two days at KKI A Christmas Miracle Archer comes home on a TLOA for Christmas   It was November 22 when our assumption that Archer would be joining his family for Thanksgivine was jarred into the reality of the KKI world. First, we had to make a formal request. Ok. Done. They call it a TLOA (temporary leave of absence up to 5-6 hours). Then we had to meet all the requirements and satisfy all the rules related to KKI training. KKI is a place heavy, indeed, burdened by many rules.   The essence of it all is that all of our prior training and experience at Shepherd did not count. And much of what we had been taught was against their rules. At least that’s how our request to go home for the portion of one day, Thanksgiving, was responded to. So, confident in what we did know, we were like hamsters on a wheel performing and doing each rule that was thrown at us. It seemed as soon as we reached and satisfied rule 381, they gave us rule 387, and as soon as we performed rule 387, it was a, Oh by the way, we forgot to tell you about rule 113.   So almost against odds that were not attainable on a time line, we accomplished them (although we later came to find out that the staff never signed off, another trust point) until we then learned our doctor wanted trach changes. You know that story. And she added things like bathing to go on a TLOA for a few hours. Hmm. Interesting for many reasons, but because unlike Shepherd’s 2 x a week shower, a couple given to Archer by Billy and me together on the rare Sunday it was possible for us both to be present as one flight landed and another took off later in the day, at KKI, Archer was given only one tub soak in two weeks, and they were tentative then too, and I was not allowed to help. So Billy and I began to realize it was never Archer’s doctor’s intention to release him.   Why, hard to say, except it began we believe operating from a place of fear. That fear hardened her heart and clouded her thinking.   When pressed, we then heard for the first time from her, It’s not safe. It was not surprising. But it stung. For starters, did she actually think Billy and I would do anything to place Archer in harm’s way? We were battling to make sure he got proper care and was safe. Not safe? It had every fairness fiber in my body on fire. It was wrong. She was wrong.   And as for other reality data points, Archer endured two flights in high altitude, had been going out on Fun Friday’s at Shepherd since September and had a track record of doing a number of amazing things relative to his injury. He had been to the movies and the Atlanta Zoo and Starbucks etc for Lord’s sake. Out in public, 30 minutes away. He did fine. Billy and I would take him on walks out in the gardens in Atlanta. Shepherd knew how important being outside was in addition to some independence for a teenager.   At KKI, we have been confined to his room. Five weeks plus now. Not being allowed to even as much take Archer down the hall or to a different room to meet with friends. We kept asking.   So, Archer’s experience at Shepherd was not good enough in their eyes. Our training at Shepherd was not good enough in their eyes. And they added that we needed that trach change experience which we had never had at Shepherd because they didn’t do trach changes there. All of this, seriously confusing. And KKI was telling us we needed 2 caregivers with 2 trach changes each. And the 2 times I performed those first gassly trach changes, trach tissue yankings would be a better term, along side the JHH PICU respiratory therapist who was their superstar and again alongside the JHH ENT doctor, even they were not good enough for KKI, and in hindsight it is more accurate to say, it was not good enough for Archer’s KKI doctor, who insisted she was speaking for all of KKI. So, even when the JHH ENT doctor said to me, Don’t worry. I’ll make sure your experience here goes to KKI, and even when KKI said they would defer to the JHH ENT doc on anything related to Archer’s trach, Archer’s KKI doctor was picking and choosing. The fairness, justice and equity bubbles in my bloodstream were gurgling loudly. Especially the ones about process. Especially when I knew process. Especially when I knew they could have good process if they wanted to. It gored me they did not. Or that they just didn’t know. Or have any awareness.   So, she carried out her jail sentence even from afar. Because rule 243 is that we can’t even take Archer out of his room until we were trach change trained. But clearly trach change trained alongside the above experts was not satisfactory.   Archer was not happy, I was not happy.   To the credit of Archer’s doctor, she may have had a flash of remorse or empathy. It’s hard to say. But I want to believe she did given the circumstances that we found ourselves in, operating with a very different worldview about care. That said, she said to us back on November 22, Let’s work toward a Christmas TLOA.   It was a salve.   We took it seriously. Which meant, we believed her, and were willing to still try and trust her despite the debacle of the trach change fiasco and betrayals of Archer. She never did talk with Archer as she said she would.   Anyway, regarding Christmas TLOA, Archer did his part and we did our part. As it turned out, she was not good for her word. That saddens me even as I write. It is so important that we are all good for our word.   Our request was for Christmas Eve, return to KKI and then come back home for Christmas Day, up to 5-6 hours within all their rules.   Two trach changes later, both performed at KKI (and both finally with lidocaine which had been denied to Archer initially), we should have met all the rules, finally. But we found ourselves last week, a full month later denied again. It’s true.   Reason given: He’s medically unstable. The same doctor; the same barrier.   While we had been raising Caine those first two weeks at KKI when we saw Archer’s lungs not being suctioned properly, and then in the PICU when we realized no one had been doing Archer’s bowel program properly for him, we spent a lot of energy showing staff what Archer had needed re proper suctioning and other methods, proper to Archer that is, and perhaps not to other patients or to babies or toddlers, but best for him to keep him from desaturating, which we were used to plugs but not desaturating. We felt we had work and be on alert again as we had been back in Atlantic City to prevent harm to Archer, to prevent more drugs, including narcotics and antidepressants which they were quick to dispense, which also get used for a number of things other than their intended purpose to make it easier it seems for the medical staff but not best for the patient, and thus nevertheless adding more to Archer’s daily diet when he has expressly stated he wants off of them. As an aside, I want to think more and write more about the suffering that occurs to me that staff have to see and they have become numb because they have to to survive and giving out narcotics makes it easier for them not because they are negligent and uncaring, but because it just makes it easier to have a patient in la la land, compliant. That is for another day, and I digress.   But we have asked why he still needs his feeding tube which we have not needed but KKI has insisted it be maintained, and two other drugs which were to have been short term but have remained in place at KKI past their intended purpose. Basically, nothing was in motion, it was all assessment and more assessment, while Archer suffered the consequences. It was as if the decision making system was paralyzed. Stupefied.   It was also becoming a clearer possibility that his doctor may have actually been a departure from the rest of the KKI staff, especially the respiratory therapists and the rehab therapists who knew the most about Archer, five weeks later as they touch him everyday. What had become a stiff interaction as we continued to seek information and answers but were stonewalled again and again with KKI and their bizillion rules, so many that their staff are wildly inconsistent, and they can’t even remember the rules they have, seemed to be boiling down to one person. Or was it? It was hard to tell as she said she spoke on behalf of the institution.   Regardless, the doctor in charge of Archer certainly knew how to use the rules, rules that were opaque, hidden and brought out when KKI needed them. And for us it had become to feel like the Archer Strong team against the institution. Isn’t that the most pitiful aspect. When good care, especially at this critical phase in recovery, is so very vital. And when a family’s energy, dispersed on care, raising a family, making ends meet, continuing to work in qualitative ways for others who also have high stakes, managing our home construction project for Archers accommodations and balancing the social desires of trying to get Archer’s friends up and out of the lobby where they have been made to wait to see Archer, waiting for an adult escort, waiting for the KKI staff member to scour the entire floor to make sure there are no more than 4 people with any degree of relationship to Archer, be it parents, siblings, friends, priests, educators etc, on the floor at any given time. They know little about FT for teenagers. They have sent a scout around the floor to make sure we are not elsewhere like the bathroom, unaccounted for in the number. I’m not kidding.   I try to tell myself repeatedly, they are just not used to a local family, they are not used to an adolescent who has a lot of friends in close proximity, friends who are old enough to drive themselves to see Archer, they are not used to a working mom, they are not used to dialogue, they are not used to explaining, they are not used to teaching, they are not used to…. It pacifies me and helps keep me stay grounded to continue to give them the benefit of this doubt, especially when I feel I have become unglued at times.   It has been so very confusing. But in hindsight, I realize it was not just the institutional barriers we were beginning to see and feel. It was also a singular person barrier. A singular person whose position of power in a system could allow her to use the strictures and cracks in a system, in the institution in a capricious way. That is a dangerous person and situation if you are on the receiving end. And Archer was. Notice I said was. A day ago I would have said is. We are grateful to your prayers that have sustained us to move from is to was.   And it’s not that she was evil as others in history have been who have done the same thing, but it’s more that she was unaware.   I realized as she was grasping desperately for new rules and refusing to engage, even if that meant feeling uncomfortable, as quality engagement is not always comfortable, ask any good transformative mediator, that, it dawned on me, she was hiding. A singular person with a lot of power who probably was scared.   We have all been scared. Lord only knows the times I have been. But it’s so very important to know that. When you are, reach out. Don’t go inside. Well, go inside for peace and find your inner resources. And then reach out to others to help you. She has retracted and entrenched. It has been to Archer’s detriment.   So, having to succumb to being forced to remain in one hospital room, 5 weeks later, with the request for the Christmas TLOA made repeatedly as well as in writing beseeching the doctor to tell us what is necessary for us to line up and put in place, and still having no response, I told her very directly that while I thought it was a shame the situation between was was like this, I would go around her.   I felt that decision on our part getting clearer when she couldn’t even respond to our asking for what we needed to have in place for a TLOA. We offered that even if she couldn’t email us, could she meet with us to tell us what we needed to put in place, and even if she couldn’t meet with us face to face, could she send a video of instructions, and if she couldn’t do that, could she at least dictate into a recorder what we needed and needed to do. We heard Nothing.   We asked could she show us somewhere in writing, anything, what we needed to line up for a successful TLOA for Christmas. All we got was, It’s being handled by Sr Management.   So, we had a meeting with Sr. Management.   Why is Archer not allowed to go on TLOA? And can something change about this situation?   Backing up in the story of what happened, we pressed, we informed all staff of our request. It could not be contained to a request to our doctor. It needed an outlet. I did not want to be caught unprepared and surely there was much to have to put in place. I was concerned about the transportation especially when one staff wondered if Archer would go by ambulance. Ambulance? Another said a van. That sounded more likely. Does KKI provide transportation?Does Baltimore City?   In Atlanta, Shepherd provided the transportation for fun Fridays in a van, and we could walk Archer down Peachtree Road as there were loads of restaurants and such, walking behind him he on the vent and Billy or I, just one, walking behind his power chair pushing the table on wheels with all his suction equipment in case of an emergency. And in Atlanta, they gave us an educational class, one of many, that we could call MARTA the public transportation and they will send a van to pick you up and take someone like Archer in a powerchair where he needs to go.   So, we continued to ask KKI: How does this work in the land of KKI? No response. Staff did not know either. The info we got from the social worker had five things that needed to be satisfied, large paint brush like things such as complete training. Nothing about the mechanics.   We had an inkling when in a reactive panicky moment Archer’s doctor had said before Thanksgiving that none of their equipment would leave the premises. That was when we were hearing No for the first time for the TLOA about Thanksgiving. I recall the moment vividly. I looked at her and said, You are saying that when Archer leaves, we are to find him a powerchair? A powerchair that takes 90 days to scrip? Equipment he and we will not even be familiar with? She said yes. I recall being incredulous. And I told her so. It didn’t make any sense. I said, if you are so concerned about safety and seem to think for some reason we are not, why in the world would Archer go out on a visit without his equipment here? She provided absolutely no response except that it was policy.   While I found that professionally unacceptable, I also had clues that she was not thinking clearly. She was not able to because she was having the conflict experience and unaware of what it does to you. I was having it too but highly aware of what it does to me/to anyone, so it’s as if Billy and I have been operating on two parallel tracks: the real life experience of what I have taught about for years: the clench in difficult interactions that is both physical, mental and emotional, and the other track where we can observe ourselves in the situation. Not that we can stop ourselves from at times muscling our way through this crazy nonsensical institutional morass, but that we can observe ourselves.   I knew our doctor was muddled. I knew the only way through was to meet, to talk, to be real, even if difficult, but she would not. I asked her in the hallways, twice, that it would be good if we could meet and talk. So, I took all our concerns up in in rounds every morning. Louise vs the 8 or 10 people that troupe into Archer’s room each morning before 8am. She put an interning doctor in her place on rounds, that was helpful. The others just watch. No interaction.   We can’t have an unaware muddled lead doctor on the Archer Strong team.   So, working in a vacuum of the institutional barriers and the human barriers, knowing we could just give up and be filled with despair, and in Archer’s case, mistrust of his caregivers as he had already wondered out loud to me and asked me to champion for him, I contacted our powerchair rep who confirmed powerchairs are on loan and go with the patient. He even, bless his heart, came to our house a couple weeks ago to walk through entrances we may need to widen and to see the kind of corners Archer will need to negotiate and which type of wheel drive will be best. I love that man. He cares. He takes an active interest in Archer, and within his lane of expertise he problem solves his piece of the puzzle. .   I also sought the assistance of the KKI person who was apparently supposed to do this. Weren’t they supposed to help us? She got back to us and said, Sorry, they all need two weeks notice and it’s less than two weeks. That’s it. No way, We were serious. We would figure it out if they can’t be champions for Archer and problem solvers, we will find those who are.   I elicited the support of the Reeve Foundation, and within their lane, they helped me find good resources for any equipment we might need. And I texted a new old friend whom I’ve met along the way who has an injured teenager in a powerchair for assistance with transportation when and if we might need it. And he helped me solve that piece, with grace and generosity. And I asked one of my chief angels to start finding and understanding the landscape for renting the same equipment for Archer that he had at KKI through the referral companies. She is a believer like you and we are. I knew she would do an excellent job.   We were going to get Archer home for Christmas. Of course there is a risk. There will always be anytime Archer does anything. His life is not like it used to be. But there are also the same risks that any of us has driving…living. But there is no medical risk so large and looming to prevent him from coming home. 5-6 hours. That is all.   My goodness, let me deviate from this path and tell you a couple things. In the middle of ride down the rabbit hole, Archer continues to thrive and show us what he can do and make improvements. Here are some notable highlights that the medical team never even mentions in their daily morning rounds. Never. Here are the latest:   1. Archer is withstanding being on a tilt table with no additional needs for oxygen and suctioning. Pause. Breathe. Take two deep breaths. Feel the gratitude. The stress on his body of a tilt table for endurance. He does it. Thank you dear Lord our God and Mary and Fr. Bruno. And, celebrate!   2. As a result of that, Archer’s powerchair rep brought in a chair that allows Archer to stand up, yes a chair that has a motor and seat strong enough to lift him to a standing position strapped in so he doesn’t tilt forward, like at a wild ride at Six Flags. Pause. Breathe. Feel the gratitude. Be filled with amazement. Thank you dear Lord and Mary and Fr. Bruno. Celebrate!! Video attached. How cool and wonderful and awesome is that!   3. Archer’s most recent CT scan shows the debris in his lungs decreasing significantly because Of a good pulmonary plan. Pause. Breathe. Feel the gratitude. Thank you dear Lord and Mary and Fr. Bruno. Celebrate and feel how good it is to smile. For me, I can feel the warm tears and they are so happy.   4. And, drumroll please….Archer has reported feeling two of his fingers in his left hand. Yes! Praise God for the miracle of the body and what we can’t fully understand. Can you believe it! He can’t voluntarily do anything (yet) to move them, he feels them. They are the same hand he thought he felt initially in Atlantic City that he worked on with his mind and prayer in the middle of the night. Pause. Breathe. Deep breath. Feel the splendor of that breath. Feel the gratitude. Feel the exhale and the ease. Thank you dear Lord God and Mary and Fr. Bruno.   There is so much to celebrate.   But, Archer’s pulmonologists at JHH have no idea of the whole picture. They never come to see him.   So back to our TLOA, we had called the company that is owned by Johns Hopkins that KKI uses as the label is on all their equipment. Yes, they had ventilators etc. We would need a prescription and two weeks. There it was. I tamped down my rising injustice feeling that they had boxed us in again. We went elsewhere. We succeeded with a company who wanted to help with our Christmas Miracle but we still needed a scrip. And we still had No from KKI. I knew we could problem solve this at KKI, with KKI, if we had the right people. The rental company and we only had two days. This was the day before yesterday. I sent all the info to our contact at Sr Management and provided the fax number for the scrip. I also made it clear that we knew we were working with No, but still hoped for a different outcome, and, so as not to get ensnared in an institutional barrier of no time left, I was asking for cooperation and collaboration to at least have things lined up.   I knew from experience how key this is in moving anything hard forward. You have to constantly be thinking ahead and imagining where the puck will be as Gretzsky said. I so resonated with that years ago as that is what a good transformative mediator with multiple parties committed to a quality outcome will do, at least that is a belief I hold. And it’s one I bring to my clients.   So, in the medical context with Archer, one of our new learnings: Do all you can to not be at the mercy of the institution, to not be the victim, caught willy nilly in the many institutional gaps created by working in silos and being immune to the human experience, human suffering. So much of which could be avoided because it is created by institutional shortfalls and other suffering that could be alleviated by the brilliance that exists in the minds and hearts who work in institutions but they become as ensnared as we are in institutional think. I honestly believe that.   I feel compassion for those in those institutions. I have to be on guard though to feel compassion and not pity, as it truly is com-passion. Passion with each other. Passion is suffering. That’s why we call Good Friday, The Passion, when Christ was dying for all our sins. All our sins. Mine. Yours. Those with any faith. Those with none. All of us. Unity was born in that painful moment of passion.   As I struggle to feel compassion for the doctors making decisions in their institutional setting for Archer, and for all his caregivers having to put up with us!, I want to guard against the emotion of pity as that emotion seems to me somewhat tinged with arrogance or tinted by disdain, both of which can harden my own heart, harden anyone’s heart I imagine. And I have felt my heart hardening and I’ve known disdain is close to despair and both promote dark and evil, and I have prayed fiercely to be Archer’s Advocate and stay soft and warm and loving, the way God made me. I want to guard against thoughts and emotions that open the door to darkness and instead I want to feel them and allow them to be felt and just wash over me and through me rather than getting stuck or motivating me. I want to remain motivated by outcomes that are good for all, even if the path is very hard.   I know that changing an organization or getting institutional movement takes more than compassion and more than a good heart. That said, not much tops compassion and hope together for a foundation, a strong base on which to try.   So, I imagined Archer at home. I focused on the practical baby steps of mechanics and worked as well on the dialogue with leaders at the top, the real Sr Management. And I asked you to remain hopeful. And you did.   And there were a couple times when even my own peeps were about to throw in the towel in the last forty eight hours. I said to myself and I said to them, Keep hoping. Do not give up.   I feel like I knew in a deep way, like a spiritual adviser and friend had said, that Archer will go home for Christmas and come back. And he will be different. He will be stronger for the trip.   So, you can see that we had asked for a meeting with Sr management. They probably wanted to meet with us at this point as well as it had reached a boiling point. And we had wondered, Who was this ubiquitous Sr Management anyway? We looked forward to finding out.   So they put it in writing. We have met and Archer is medically unstable. It stung again. But this time it fueled me. I asked, Tell us exactly how is he medically unstable? It didn’t feel right. You are denying him a simple 5 hour leave of absence, 12 minutes away from KKI at our home? where we have a beautiful access ramp and doorways that have been cut to open and a family that has not been gathered for almost five months and with clear X-rays and clear airways and improved CTs, and ability to be lifted vertical and succeed and breathing room air during the day (finally, as we had been doing at shepgerd) and never ever having a desaturation problem or a heart problem Durinf the day or anytime that he is upright, never … And you are summarily denying him. You say he is too medically unstable to go home for a 6 hour visit? Yes they were.   Not good enough. Please, may Archer come home for Christmas? No. Why? It’s not safe was all she could say and all she has ever said. We were in a tail spin. I could sense that Sr Management was beginning to see our side of the story.   So they consulted other pulmonologists. The KKI doctors consulted apparently with other JHH pulmonologists, all from afar, and this Is how it goes. Phone call. Hi x, this is dr Y at kki. We have a patient on a ventilator we don’t think should go home. Can you please take a look at his charts and give us your opinion.   Fait accompli.   You know what they all said from afar from their look at a chart from their not seeing and not knowing Archer. Our lionhearted son.   Non, Nada. No. That was wrong.   Once I realized that’s how the consults went because I heard one, I knew we needed to have a different conversation with such specialists and to see if one would come to meet and see Archer.   So, we went to work. Furiously. A few more learnings I now have. Institutions are incredibly conflict avoidant which manifests in can’t do that. Rules. More rules. And passing off anything tinged with risk to “they told us”, eg in Archers situation, JHH Pulmonary says he’s medically unstable. Ironic when Jhh pulmonary has yet to have the same doctor come see Archer more than once since admission. 5 weeks. So, yet another pulmonologist from the same shop as the one KKI uses came over to meet with me, a first in 5 weeks of our asking over and over, only to proclaim as he entered Archers room that Archer was not medically stable. Then, he examined him. It was rising to the level of hilarity. And it wasn’t funny. None of this was funny. None of it.   Our confidence in their integrity which was already precarious but got blown away. It only needed a small poof. That doctor gave it an unnecessary big blow. They were playing around with labels that carried heavy chains. And while JHH doctors and nurses are not good enough for KKI for qualifying us as trained, and my namesake Niece who is a JHH pediatric nurse for goodness sake, a pediatric nurse who suctions and gives Meds and changes catheters etc was also not good enough for KKI all these 5 weeks she has attempted to be “kki trained”, or not good enough for the one doctor barrier, boy howdy, JHH can sure be good enough when the KKI dr wanted to use them for her own purposes. And a very odd purpose at that. So, none of what he had to say passed our bs meter. Something was out of alignment.   Much and totally to the credit of Sr Management, it didn’t stack up for him either, or better said, he could see Archer was ok to go for a visit, that we were capable, and that KKI should have been working with us to put all this in place weeks ago.   He said he still needed a pulmonologist who would say it’s ok. Well, if they can expert shop, so can we. But I would do it with integrity. And if someone we found, recommended by the head of all of pulmonary whom we know, said no and gave good reasons, I could accept that. I knew anyone who understood the whole picture and was a peds pulmknologust would be the best bet. So did the former head of Pulmonology.   So I talked with him. Then he talked w all the others. We got an email that said they all concurred. Including the dr we had brought in the day before yesterday. That was patently false. I had just talked with him.   New lesson: KKI says, JHH told us and they have the final word. When questioned, JHh says KKI told us and KKI has the final word. So who has the final word? Remember how we have asked that question over and over. I probably need to qualify the question. At least in our eyes, as Who has the final word that is credible.   New learning #2: doctors stick together. There is huge group think.   And, it’s not because they are not smart. I don’t know yet why it is exactly but they don’t question each other because they don’t want to be questioned. So, it’s easier to give a second opinion and say I agree. Then the fraternity is not rocked in any way. Status quo remains. Homeostasis is maintained. It’s not a bad thing. Indeed, it’s what most groups do and there is a healthy bonding aspect, a certain respect that is given and received and so the group remains intact, glued together. It’s a principle of how groups form and stay connected. But, all that said, the group may be falsely strong and umindeed fragile and weak when a new problem or challenge comes along and the group has no flex. The group has list its elasticity. The group loses its resilience because it becomes closed. And eventually brittle and cracks in the system. The tighter the clinging, the more likely the fracture points. And that is how I am now seeing JHH and KKI, even as separate as they both maintain they are. Institutional group think. It doesn’t have to be that way. We need a few great men and women to forage a new path. I think it could be done and I’m starting to get some ideas about this and how, but our mist pressing issue remained: getting Archer home for a TLOA past all the institutional red tape because we knew medically unstable did not fit. It was inaccurate.   New learning #3. In a rigid system lacking portals and mechanisms for quality dialogue to problem solve together, you can bet on it that there is expert opinion shopping. The latest rounds of emails, group think was mounting as KKI was expert shopping. If they expert shop, so can we. Sad but true. And that is what we ended up doing, but it was more a God thing the way it all unfolded. It was truly like the Red Sea parted. A Christmas Miracle.   Here’s how it happened.   But first I want to tell you the most important of all learnings about these institutions. And the learning is one I’ve always known. You know it too. Any deeply entrenched problem can only be solved when people talk to each other. Face to face. No matter if it’s Jhh and kki or the U.S. and Mexico, getting together and talking -face to face–is the only way to start the groundwork for breakthroughs. Yes, it takes time. Yes, it takes effort. Yes, it takes courage. And yes, it might not be pretty, at all. At all. Indeed, it can include loud voices and even some good old fashioned table banging. I know that arena. I’m comfortable in that arena. Because I’ve seen the table bangers over the course of my two decades of mediating do extraordinary things that most people would never imagine. It takes surgical intervention. And it takes face to face. You become curious about the table bangers. What is it that is so important to them? Something has them riled up. What is it? Find out. And allow them to find out about what has you riled up too. This is why transformative mediators are so incredibly useful to people, to families, to institutions, to society. Transformative Mediators believe in face to face dialogue. Deeply. No matter how ugly it is or hard or difficult.   And that is exactly what happened for us.   We have a Christmas Miracle. We have a champion. It turns out he’s as frustrated as I am and there are a number of things we can change together. I am indebted to the head of the Sr Management team. Because of our tacking this together, finally, we had all the creativity we needed. It just needed to be coaxed out.   Our immediate problem was a simple 5-6 hour TLOA on Christmas Eve and Christmas Day. The chief medical officer is our hero. He wanted to solve the problem. He was willing to allow me to help him do that. And we did.   It’s was so intense here for 6 days. I mean my focus has been myopic. Well, alongside getting the construction at the house finished,getting the dust out of our first and second floors, despite all the plastic coverings and sheeting, getting furniture and a house put back together and some semblance of Christmas and, oh by the way, don’t forget trying to have some semblance of Christmas tradition aka baking cookies with my sister and All our kids so I could bring some to the staff who do take care of Archer, even the guards at the front desk and the parking attendant.   So, we did it. It was Long and tedious and arduous. It was collaborative. Finally. It felt like David and Goliath. And then like flow. It just flowed.   There was a moment at 3pm the day before yesterday when I felt there was not another email to send, text to send or read, phone call to make. Nothing more could be done. I went to Archer’s room as he was in his therapies, and I prayed. I sat quietly, calmly and just prayed. It was peaceful. It was really peaceful. I talked with Mary, God, Fr. Bruno. The archangels, all three. About 30 minutes later, I opened my eyes and made a phone call to Sr. Management. I was told by a secretary they were on their way over to see me.   Sure enough, at that moment I kid you not, Sr management entered Archer’s room and asked to meet with me in a conference room. As we walked out, I said, I am coming to this meeting filled with hope and look forward to the good news you are about to share with me.   We sat down and he began to tell me what was not good news. I had already seen the email and told him so. I told him it’s so much easier working with transparency. He said then, I have tried but they still say no. I said, we haven’t tried together.   That’s when our joint call was made etc.   We did it. Against all the Johns Hopkins pulmonologist saying it was a medical risk, we found another pulmonologist who heard the whole story with both at management and me, who came immediately to see Archer and actually talked to Archer. The one visit that other dr never even spoke to Archer. The doctor said Archer was approved to go in his eyes and gave us his personal text. That is what I was used to from Archer’s NJ and GA doctors. He’s on the Archer Strong team. That was all we needed. The medical director and I were on the same page and just needed one expert to confirm. Hallelujah.   Please jump for joy with us. You should see Archer’s beaming face. You don’t see a smile like that very often.   We went and celebrated with all the staff all day long in the business of preparing the details which are many.   Yesterday morning, one of the staff asked me if I slept well. I could honestly say that even with the beeps and the buzzers and the staff turnings, I slept very well. Very well. I am so happy.   It feels like I have been let out of a false jail. It feels so good to see Archer excited. I feel free like myself again. I feel like myself again today. It has been so incredibly stressful I can’t even tell you. As I write you, it is such a relief and I feel the tears which let me know just how gruesome it has been for a solid week, worse than the first four weeks. But it is all good.   Thank you God that we have had this breakthrough.   And yesterday morning, every single request Billy and I have been making since arrival was covered in rounds this am w Sr Management in the lead. We are so grateful.   Archer’s Army, we are grateful aren’t we! So we have Archer Off one of the narcotics and he began the narcotics wean yesterday. Archer smiled big again. They will have the feeding tube removed in January most likely. It was amazing.   Just to illustrate briefly before I wish you all a wonder filled Christmas, I want to share what quality interaction can do.   Later in the morning yesterday, the other senior doctor walked with me in the elevator and told me they were switching out doctors from Archer’s care and was asking me if I’d accept the new doctor. I said, Yes happily, but that I still hoped the prior doctor and I would someday be able to meet and talk it through. As for the new Doctor, we both talked in that elevator about how we need to communicate effectively and directly and together. And if she feels I am disrespectful or vice versa we will say so. She agreed. I agreed. I then hugged her and she was shocked I think. It feels good to be yourself. It’s amazing.   Then later in the morning Sr management and the head of transfer came to find me to tell me they think it’s more prudent that Archer go with all their equipment rather than renting and they asked me if I would consider a longer TLOA Xmas day in lieu of Xmas Eve because he was concerned about darkness and rain. I asked him how important it was to him. And he said pretty important and explained further about the dark. It made sense to me. It made sense to me also because we had helped each other. We knew each other and had a bond. A trust. And it had been arrived at after a great deal of loudness and hand banging. It was transformative.   He also shared that he was thinking about it as he came to work in the dark this am. He was thinking about us on his way to work. That was meaningful to me. He said he knew Xmas eve was really important, he had heard me and knew about our tradition. He said he could get a webcast tech to set us up. I wanted to say yes, because I was grateful.   It all felt easy. After checking with Billy and with Archer, I confirmed 10-6pm for Xmas. I respected him. He respected us. It was a good back and forth, took about 10 min and we were done. It was easy. Amazing.   So giving thanks for this joyous decision. We have a new beginning at KKI. They have so many amazing opportunities to be stronger and better. I may even become a champion for them. We shall see. I’d like to.   Merry Christmas dear friends. What a glorious day. The birth of Jesus. Whether you are Christian or not, and many of Archer’s Army are Jew and Muslim, we all know what an incredible figure in the history of mankind Jesus Christ is. Tomorrow is his birthday.   That he was born to a teenage mother, that the wisest and richest men travelled weeks to find him just to gaze at him and be in his presence in the most humble of dwellings, outside in a barn with barn animals, is breathtaking. That his presence endures and whether or not you believe he is the son of God, as I do, and all Christians do, he has brought so much love and unity into the world for those who come to know him.   You have all given to us so much through a spirit that comes from a holy spirit dwelling within each of us. That unto itself if a miracle. We can start again. We can begin again. Each day. With different people we love and people we have offended and with people who have offended us.   Breathe deeply. Allow yourself some peaceful quiet moments. Feel the love of God in your soul, your body. Thank you for continuing to create the energy field that nurtures healing and banishes darkness. This is the season of Light. You are shiny. Each of you. And Archer’s future looks bright.   Thank you dear God. Thank you strong and living mother Mary. Thank you Joseph for attending to Mary, caring for her and staying by her side, and giving her place to rest.   Amen. Sending love


December 20, 2015   Archer Senft Family & Friends Update Sunday 12-20-15, DAY 139; 1month, 6 days at KKI   When a child is sick and in the hospital, the desire to realize the potential of restored health, to breathe in the Hope for future health…this is what allows a family to survive the devastation of watching your child incapacitated and suffering. The capacity to believe your child will get better…is huge.   Today, I ask for your specific prayers for our hearts. The times when they are cold and hard. That they might thaw and become open again, to begin beating again in rhythm, with ease. My heart, KKI’s heart.  So that Archer can get better.   We had meeting with KKI Sr. Management. We felt that we were listened to for the first time about Archer.  We were grateful for that. Maybe it was a breakthrough. We are hopeful. We are hopeful that KKI will want to assemble a team for Archer that is creative and inspiring.  Please join us in the feeling of hope for that aspect of the creative miracle.   We ask all the prayer warriors to pray for this. It’d be good for everyone. The opportunity is there for KKI. They have a really good opportunity with us to raise the bar, and we can help. It truly would be very good for them.  Hope for that please. Let’s create the energy field of potential. Breathe in hope. Breathe out barriers.   We have a lot to be hopeful about at this time of year. Hope of new life, new beginnings. Hope restored for us by a little baby born in a manger to a teenage girl who became a very wise and loving mother.   That just rivets me.   Thank you, God, for all the hope that this time of year brings. And for choosing Mary. Thank you Mary, mother of God, and to all the parents who so lovingly foster the lives of their children who bring us such hope for now and the future. All the parents who are working so hard this week to create a wonderful Christmas for their children or grandchildren.   Our son Pete graduated today as a civil and environmental engineer from the University of Maryland. We are so proud of him. Here’s the neatest thing too. Archer joined us!  Well, not exactly.  While he couldn’t be with us in person bodily, he was with us in face time.  Billy installed Hey Siri for Archer, the neatest thing invented since Archer’s accident. Billy mounted his iphone on his power chair, now that’s thinking! So, with his awesome voice which we now hear regularly (indeed Archer hasn’t clicked for me in the night for many nights now, he just calls, Ma), he can voice command, Hey Siri.  So, here’s how it works, and all of Archer’s buddies and friends please do this to call and have fun with Arch.  Call Archer and let it ring (after 5pm weekdays so that his workday and PT’s etc are not disturbed, and anytime during the weekends.)  He will see you calling as your name will appear on his phone. He will not be able to answer it on voice command, as that technology is not out yet. YET! (Technology will be Archer’s friend for sure so we will stay abreast of it. If you hear of any new cool things, please let us know).  Anyway, hang up. Archer can command Hey Siri to call you back, and if you have face time, you can see each other!  So, we face timed with Archer during the entire 90 minutes graduation ceremony and then again for dinner afterwards as if he were there with us. It was awesome.  Of course, he just listened in on our bantering but it was pretty cool as we all checked in and we could see him pretty well.  Back on his end, he later said he really loved it.  You could tell as he had that bright easy smile.   While we were out in the real world, here it is December 20, Dutch asked me very earnestly, Mama, Are we going to have Christmas?   I knew what he meant. I have been managing from afar with brief check ins on the construction project at our house. One would never ever believe that it will be finished enough this week.  We’d never be this far without my angel project manager. That said, the entire first floor and outside of our house is totally blown up from the construction, the sanding, the building out all the cabinets to house Archer’s medical supplies and linens including the 10 pillows he needs at different times of the day, the drywall to cover all the new electrical and plumbing, basically tearing down a part of our house only to build it back with new insulation, a separate electrical, separate HVAC, security, generator, capacity for future technology, insulated windows, roll in shower, various lights and caregiver lights, and night lights, and devices Archer may be able to operate through voice command (another angel came forward and is a brilliant MIT angel interested in helping Archer communicate with voice command and gave us the idea for Hey Siri), not to mention the widened door ways and pathways for his power chair, and paint and polyeurathane, and all that is covered in plastic but not really covered. So, Are we going to have Christmas? It broke my heart. So many lives impacted by one injury. Of course, darling. By tomorrow.   All I want for Christmas is to walk through a living room and have it livable again and a decorated  tree.  We will bytomorrow night.  It’s in progress. Like everything else. Not yet finished but a heroic effort and so much love and care by every one.   The Cathedral Moms are coming to clean tomorrow and we will be ready for Christmas! Not quite like usual but a tree was delivered and now we will be able to decorate it. It’s all good. So good.   So what do you want for Christmas? My real wish is for a creative miracle.  But honestly if Archer is granted a home pass, and we pull together in this week all that we need to regarding transportation that is not an ambulance, Archer in his power chair, maybe in a van or something, and we rent his ventilator and get it set and we practice with it and we are ready to bring him with the all that we would need for an emergency with the suctions and oxygen bag etc, it would be a really wonderful Christmas.   As for Archer, I asked him a few weeks ago what he wanted for Christmas and he said, All I really want is to go home and be with you all.   Sr. Management is reconsidering this request and that is good. So, please pray that their hearts will see the goodness and that everyone will have confidence that he will be safe.   Pause and imagine right now being with those you love the most. I know it’s a crazy busy time of year, but just imagine when you are with those or someone you really really like to be with, hanging with them, spending time with them. That is what Archer yearns for, because he was always so good at just being with, bantering, laughing, usually stretched out out somewhere, with his long lanky body draped on a sofa or his legs over the arm of a big chair or stretched out on a beach chair. He likes to just hang out and be with those he loves.  I so hope we can do that. After all, our entire Christmas Eve tradition now involves something Archer began totally on his own when he was younger, maybe age 9. After we did our rousing rounds of On the First Day of Christmas, My True Love… as all the kids each play a Christmas carol or two on the piano and we all sing. Then we end with the boys vs the girls on a very rousing Five, Golden Rings….. Settling back down around the fire and such, Billy always reads as a closer for the night, ‘Twas the Night Before Christmas.  That one year many years ago, after Billy finished the original version for us, Archer came forward with ‘Twas the Night Before Cajun style. We made room for him on the chair and he read that book with the best Cajun drawl and accent you ever did hear with all the beford chrissmsss, wid Santa and da alligators and all the spice of the Cajun verses, and it was a riot. And so, he started a new tradition and has done it every year since. He was about to pass on the legacy to Dutch, but Dutch said it has to be Archer this year. So, we really need Archer. And, since no one has been small enough for a few years now to sit in Billy’s lap while he reads, we will have the first grandchild on Billy’s side with us and we will start our tradition with a little one in the lap again, and so we need Archer to to the second version! And Archer needs us.   Wait and see.   Like Archer said last week at KKI when he learned about a new plan for his lungs which is radically different than the one we were on at Shepherd, I guess my race just has a lot of hurdles.   If nothing less, a lot of wait and see. We are hopeful.   Let’s all pause and just take in the splendor of hope.  What do you hope for this season?  Hope is a resource we cannot live without.  If your supply of hope is low, maybe that is what you will wish for this season.  Let us all wish hope for each other and for those who are struggling to find it.   To Fr. Bruno, praying for his intercession for a small miracle of beginning again, hopefully for us at KKI and KKI with us. We could be their greatest ally and an asset if they choose it to be.  I think it is possible. It will take a lot of repair work. And forgiveness. And intelligence. And open warm hearts. It’s worth it. Life is worth it. Always worth it.   That we will all be restored in some way. Let us pray for that too.   God is good.   Amen. Sending love


December 15, 2015   Archer Senft Family & Friends Update Tuesday 12-15-15, DAY 134   Struggling to bridge the gaps. A week in the PICU, now back at KKI.   Ma… Is what I heard in the middle of the night. Then, a hideous gurgling. I lurched out of my cocoon bench bed. Oh, Lord. I looked at the monitor and Archer was desaturating quickly 87, 84, 82, 80. I flipped on the oxygen flow valve on the wall, grabbed the bag and began to bag him quickly. The staff came running in and we suctioned 15 or 16 times, going through a bullet of saline plus, and bringing up mucous each time, once so thick through the 14 French tube that we’ve been using ever since the JHH ER, that it came up through Archer’s trach and flew onto the towel around his shoulders, landing like a lugie just hocked on the athletic field. It was yellowish. We soldiered on with more suctioning. Archer was nothing short of heroic. Never giving up, always reaching for the energy required to cough while we snaked down into his lungs yet another time. By 4:00am exactly, he was finally breathing unlabored on the ventilator. It was good team work. They have finally allowed us to participate. And to bag Archer rather than relying on the ventilator between suctions.   The Respiratory Therapist threaded the suction tube; I bagged; a nurse held one arm down; a tech held the other, each of us taking turns to wipe Archer’s now long locks out of his face and back under the towel he always prefers draped around his head for the sweats.   I was proud of the KKI team. They were very nervous, but…. they did not call for a transport to JHH ER. That had been one of the main topics at the meeting I left you with last time we talked.   And, the respiratory team listened to us, for the first time. There was a shift. It was palpable. As they stormed Archer’s room, I was in motion and able to tell them what to do and they moved quickly into positions. I said we needed saline and someone went to get some as there was apparently none in the drawer; I bagged alternating with the suctioning, the way that has worked for the months prior to arrival in Baltimore but had not been followed until this early rude morning, and they continued to go down time and again into Archer’s lungs until we dislodged the plug with the saline, a practice they had not been doing for a couple weeks and what contributed to our landing in the ER in the first place over a week a ago. Sure enough there was a plug, the reason for the desaturating oxygen levels in his blood. Up until tonight, they have silently refused to bag, relying instead on putting the vent back on so Archer can catch his breath that way. He’s not a young baby. It’s not fast enough for what he needs, as it doesn’t give 100% oxygen like the bag does. And they had stubbornly refused to suction him more than a couple times. It was different tonight; it is Archer focused now, patient centered, and it felt right for the first time at KKI.   I felt grateful and I told the rounding team later in the morning so. Good job team.   Archer Senft is strong.   Crazy observation for me was that, since we had that meeting, as he desaturated and the monitor readings steadily dropped indicating his lungs were closing up so that even the ventilator and even the bag of 100% oxygen will not help him breathe, I felt totally calm. I knew they were listening now. More importantly, I knew mother Mary had her arms around Arch just like she had her arms around young Fr. Bruno Lanteri all those many years ago. I really really feel that presence. The team listened. They finally heard us. They could now help Archer. And I knew his body would respond.   Thank you, God, Mary, Jesus and all the saints and angels who surrounded us and continue to guide us and give us wisdom and strength especially in these moments.   So we have these bright moments, these glimmers of progress, the light of good health, amidst the larger tragedy that we are most recently faced with.   The mystery still haunts me. The juxtaposition of darkness and light is jarring.   It has been a very rocky ride here ever since we arrived in Baltimore. Archer left Atlanta better than he had ever been, albeit with blebs in his lungs. He was strong. He was healthy. He was breathing one hour off the ventilator for 3 days.   But he has declined in every way the last three weeks. I can write with clarity and hindsight now. It is a loss of a precious three weeks. And a set back. I have been angry about it. It was so unnecessary.   We believe in the good consciences of Archer’s medical care team and believe or hope that they are as troubled as we. They may not be as outraged as we were the week we were in the PICU or as angry as we were the two weeks prior in KKI, but we know we all do not want Archer set back. At least we will give that good faith nod to those who are managing Archer’s care. That said, as harsh as it is to say, what is painfully true is that KKI and to some degree the PICU honestly made Archer very sick. The debris in his lungs is there because he has not been suctioned properly at KKI. His body going into shut down mode, which it did the last two days in PICU, is because both KKI and the PICU have not done a proper bowel program for 2-3 weeks.   Yes, we now have both a suctioning/pulmonary plan and a bowel program in place but it is only the result of daily, daily requests and feisty attempts at talking with rounding groups of doctors and staff that it has happened. I know that plan would not be in place and Archer Senft would be in worse shape and further harmed had it not been for dialogue. And the struggle is not over. I wish it were. But we have had some breakthroughs. I should probably stop writing now because the rest is unpleasant and revealing, but it is the way it’s been for us and we have so desperately needed your support and appreciated your prayers as they gave me comfort in these rocky times.   It has taken every last ounce of our energy, asking for meetings, and meeting time and again, where about every interaction feels combative, or we feel that way. Wake Up! Wake Up health care providers, health system. Get a grip on the situation. You don’t know it all. You need our archival knowledge. You need each other. And we need you to need each other. This is a multifaceted health care situation.   It took the meeting once and twice and again a third time in the PICU attempting and cajoling and begging to be on the same page, collaboratively for Archer’s care.   The medical profession has a hard time listening. They think they know better. They may. But they have not thus far.   While the PICU was awesome in helping us coordinate care while at PICU, they too refused to do Archer’s bowel program. That time, a pulmonologist got in on the act and said the backup was not only making Archer very sick but was interfering with his diaphragm movement. That was helpful. That was upon discharge, so we went back to KKI after a week in PICU not in good shape, about to attempt a bowel clean out. Totally totally needed, but should have been totally totally unneccessary and was totally avoidable. I’ll tell you why. Not listening. And raw arrogance. Or ignorance. Or both.   Archer was laid out for 2 days that last 2 days in the PICU, worse than we had ever seen him since the very beginning of his injury.   That is very serious. He was listless. He was grey. Yes, it seemed we had bright moments and even breakthroughs on the pulmonary program earlier in the week, but then the cumulation of their not doing his bowel program, not giving Archer the probiotics we insist on, as they somehow did not make it into the med charts from KKI to PICU, these simple things messed him up badly. And it took a while to figure out. We kept asking about the bowel program and they kept telling us they had done it. It also caused AD, which we continued to ask about but they were not familiar with the symptoms. They treated the symptoms, quick to put him on anti-nausea drugs.   Then, as before when KKI had shunted Archer to the ER room the first time for an xray of his abdomen, believing his bowels were backed up, (why, because they caused it, not following his program) and the xray showed he was stopped up so completely in his bowels that his system was shutting down. They remedied that with major clean out of his bowels. We said over and over and over again, Please do his bowel program. Digital stim. 20 min. Non stop. Continuously unless he manifest with AD. He’s like clockwork. He’s healthy. Treat his body as a healthy body. But no, they would not. KKI knew better. A suppository and 5 minutes of stim is what they insisted on relying on. Maybe now, when real damage is being done and their records are now full of what they should have done but didn’t we have finally gotten their attention. It has taken debris in the lungs, pneumonia like quality of the lungs and being backed up in his bowels to finally move the stony heart of the KKI decision maker on what is best for Archer.   Archer arrived in Baltimore with a good bowel program in place, his healthy insides still working, and programmed well, no accidents, since his body was trained with the digital stim at Shepherd. Said, differently, his bowels were never an issue, nor should they have been. Quadriplegics who are complete quadriplegics have bowel programs that no one else has. But KKI did not take this into account. We told them over and over. It has not been a very good situation quite frankly at all. They refused to listen. Then the back up in his system happened again. It never should have. If they had only listened and paid attention and not been so rigid and petty and worried about the bizillion rules they have rather than the care of someone they have responsibility for, it would have never happened.   It was the same pattern of his being harmed by poor pulmonary care. They were tentative, like he was a young baby, caught up in rules and their way, and maybe a couple suctionings, that’s it. Indeed, I would hear often, after they did a suction and brought little to no mucous back up, Yeah, no mucous (as if it were a good thing) Wrong. They didn’t get it.   Upon our arrival, it took three days plus—that’s three or four days of Archer battling to breathe– of our insisting they could not rely on an in-line suction device. But the rules were that that is what they do. It may work for babies. It does not work for a 6’2” young man. They insisted it was a best practice. Well, maybe so. But it wasn’t a best practice for Archer.   They would not let us be hands on with his care in any way. It slowed us down so tremendously and the momentum with his breathing he had experienced was halted, and indeed they killed it. A bitter pill.   I would show them new suctioning techniques. They would go back to their own, like on automatic. They did work for Archer. All the while, his lungs are getting clogged up. And the stuff that is very deep in the lungs is getting trapped and drying in place, debris the cat scan reader called it.   I could see the pattern and you can imagine the tussle. Mama bear’s cub is being blatantly what felt like brutally harmed. His needs were above their expertise. That’s OK we were willing to accept at first. We were waiting for the pulmonary experts. But they never came. Two weeks of ineffective suctioning or other plan. Two weeks of no pulmonary physician visiting Archer bedside. Nothing.   When we don’t know something, we reach out for help from those who do. It’s a basis aspect of empowerment. But no, their way of helping Archer was to become more entrenched in their way. And when they panicked, they sent him to the ER. All he needed was a good suctioning and pulmonary plan. The same for the bowel, send him for another xray and then do a clean out. All at the expense of Archer’s health. No one even thinks about the amount of xray in Archer’s system. It’s ghastly.   Not many places understand Spinal Cord Injury/quadriplegia.   Not even KKI and the JHH PICU. Better or more truthfully stated, they do, but they don’t. It’s understandable. It’s complicated and they are dealing with brain injury and seizures and a host of other things beside SCI. And, KKI and the JHH PICU, they deal primarily with babies and young children. Archer is neither a baby nor a young child. It’s been very hard.   I suppose it’s been hard for them too.   We honestly feel that Archer had been made worse since our arrival.   I told the physicians in both places at our meeting, Your care is causing harm to our son.   That is not an easy thing to say. It makes my stomach knot to say that. It is actually a very harsh thing to say. But it is true. And it got to a point where it needed to be said. Too much damage.   And, for every problem they create by not listening, by not knowing, by assuming they know, they treat with more drugs. So, we had to say no, even to the PICU in the last couple days there. NO. No more drugs. Stop the drugs. And feed Archer. He needs food. And he needs to get up out of the bed.   They did.   And he recovered in about 12 hours.   They did not recognize the signs of automonic dysreflexia, a condition of quadriplegics. Drugs are not the way to treat AD. Archer has not been prone to these episodes. I hope it is not a new phase. But regardless, he and we know the signs well, are always on alert for them. They can fool you because they mimic simple run of the mill flu like symptoms. But blood pressure can rise quickly and you have to act fast. If KKI or the PICU knew about AD, they had forgotten. Just a bit of a reminder.   They are on it now.   But like most things since we have arrived, it all happens at a cost. And the main cost is Archer’s recovery been set back.   We know he is a fighter, We know God has a plan. That is what carries us through.   But it feels like the institutions are the dark side and we are looking for the medical angels.   Both KKI and JHH are very institutional. So, it feels like taking on City Hall. Why does it have to be this way? Institutions do not have to be this way. They don’t, if they don’t want to be.   We got Archer out of the PICU on Monday with sheer advocacy to get Archer off their meds, keeping the staff and attending doctor and charge nurse and nurse practitioner focused on getting us out of there, getting some food into him, even if just through the PEG feeding tube that we had not needed for the last two months, and getting him up out of bed, and regardless that their pediatric manual hoyer lift had Archer’s long floppy body practically sweeping the floor because it is designed for children, not grown men. But the sad part is because they did not have the means to get him out of bed, he lay there the first three days. Archer is neither a child nor an adult. That theme is now clear. Boy, it looks like it could be rough waters for that sheer fact alone traversing not only two medical systems, JHH and KKI but two systems: pediatrics and adult. We will need help.   We also had many bright moments in the PICU, and I want to tell you about them. But there is one more thing about their not understanding AD and flatly refusing to do his Archer’s basic bowel program. They did not know how. It got to a point where I pleaded and I asked if I could handle our son and do these things for him myself. They would not allow it. I recall the moment it dawned on me, they did not know how to do a digital stim for a quadriplegic. Or they did not want to. It is, after all, not the sort of thing nurses who like to be with babies and little children probably do very often, if ever.   So, I said to the Charge Nurse, It occurs to me that the resistance to do what is a basic necessity for Archer once a day at 9pm may be simple unfamiliarity. It’s ok if you don’t know how. I can show you. May I?   She admitted they did not know how. I was relieved for that information, actually. I truly was. It was the truth and that is what we have been asking for for so long. But when I again said I will do it, they said they would figure it out.   But they did not. No amount of my explaining the simplicity of it and how to do it sunk in. Billy had to find the literature and send it to them. It still did not sink in even after we arrived back at KKI. So, another week plus, yes a third week and two days of Archer not being able to empty his bowels. It’s criminal. Especially as his appetite remains fantastic with eating 3+ meals a day.   So they ordered the same stuff you drink for a colonoscopy. Archer had to go though that ordeal. Necessary then but unnecessary that we ever got to the place. Listening. It is a gift and it prevents harm. Where is listening in the institutional setting. Is it totally lost?   Two days to be cleaned out early part of this past week. Then as of three nights ago, KKI consented to our taking care of our son finally. I showed them how to do the bowel program. 20 min, sit in a chair and do it. Easy really. Archer, like clockwork, responded. God love that boy. That aspect of his care is being restored. I asked to make sure it is written down exactly and given to every nurse or tech as there are so many that the continuity of care is very difficult to enforce.   There was another moment in the PICU that was rich.   The PICU staff didn’t realize Archer needs to be turned every two hours in a bed in order to avoid bed sores. I was on my way out to find some staff to do it and stopped at the desk to let them know I was stepping out of Archer’s room and wanted to make sure they knew as he had no ability to call a nurse. The nurse whom I asked who was taking care of Archer looked at me quizzically and followed me back into his room. She said, Well, we have a call button I reflected her words, You have a call button. She said, Well, yeah. And she went to look for it. Upon locating the long cord with a hand remote on the end with a call button, she said, Here, he can use this. I echoed, He can use that. And she paused and looked at me almost blankly, Oh…..   Right, I said. He has no ability to use that call button.   And then there is Archer’s main need: pulmonary.   And yet in all this, the mystery of the blebs. He had so many blebs in Atlanta. We were told by doctors in 3 institutions, blebs do not go away. They can pop and collapse the lung, but Archer’s lungs are adhered to the wall of his chest now so not collapsible. So, we have lived with the blebs would never go away….but they have, almost completely. 22-23 of them are now 3 or 5. The JHH folks do not fully appreciate what we told them because they did not have the CT from Atlanta. We did. Well, they did too on a disc we brought with us and gave them. But it seems no one was aware of it or has taken the time to look at it. Wait til they do see it. Maybe there will be more believers.   In the midst of all this, miracles are still happening. It’s really crazy but it occurs to me that it’s as if Archer is having to die in some ways to create new life. Those blebs. They had energy. It is beginning to make sense to me. The struggle is hard. But I suppose it is meaningful. That energy will go towards his new breathing in some way. When he breaths on his own, it will be spectacular. It will. Even though the physician at JHH says that he probably will not.   A member of Archer’s Army sent me the YouTube, You raise me up. The children’s voices are angelic. Supernatural. I love to listen to it. I love as much to watch them. What they are bringing forth as vessels for something divine. You might want to see it: https://www.youtube.com/watch?v=HeUJ4Y-XOeY   I think too of Jesus’ mother Mary so much. I love her so much. Surely she struggled and had anxiety too. I know she knows my heart and Archer’s, and I know she knows all that I do not.   There are so many pieces to this that I cannot comprehend as I muddle through the days. Help me have faith. Please keep the faith for us. I honestly believe that each time you even think of Archer, or your breath, or say a prayer for him that you are creating the energy field that transports him out of harm back to life again.   Saturday a week ago. 12-5-15. Johns Hopkins Hospital, Pediatric Intensive Care Unit (PICU) Exactly 4 months, can you believe it. Four months since Archer was injured. We’ve been at this for four months. The day came and went.   We were in the throws the entire week in the PICU of perhaps one of the more important series of meetings that began the day I last talked with you, that afternoon. I asked for your prayers, and for you to also pray for Archer’s care team. You did I know. I could feel it. I felt strong in that conference room at Johns Hopkins Hospital PICU, and I think it is fair to say it was the first breakthrough with KKI. Relief.   You now know that it sadly was also the beginning of the unexpected next turn that was harmful for Archer. So, here’s where I am on that.   Never stay in an ICU longer than you absolutely have to.   Try very hard not to go in the first place.   And do all you can to prevent the next time.   All in all, the reasons why Archer was kept in the PICU to begin with was because KKI would not accept him back once they sent him until he was stabilized two days. OK, so now we know. Well, as the RT said to me, Archer was stabilized on day one. So… we had to wait. So essentially Archer hadn’t belonged in JHH ER and certainly not the PICU. But since there’s really no such thing as just one overnight in ICU when sent by KKI, we realized there was another opportunity, or perhaps reason, who knows, not sure which, that we were there. As the visit to the ER rolled into days in the PICU, and the days began to form a week, we felt that we had to look at this event as having some meaning. Truth be told, I have to look at crazy events, or events that I view as fraught with so many human mistakes in this way, else I think I might otherwise go mad, eaten alive with criticism for all the wrong that seems all around Archer and his care. And that is just the manifestation of my own pure helplessness and anger. Quadriplegia and lungs that are very damaged creates a complicated medical picture for recovery. But what I feel we have had to battle since arrival in Baltimore is his actual care.   The irony was that Archer was doing just fine in those first four days in the PICU, and we realized we could take advantage of our being at Johns Hopkins and line up the care we came to Baltimore to have. We went full throttle into assembling what we hoped and prayed were the right team of experts for Arch. We made phone calls and sent emails to friends within the JHH system to locate those who they thought would be the best for him. Why mess around when we have a Creative Miracle we need to support, right? It’s why we came to KKI in the first place, to have the expertise of the JHH pulmonologists and others.   We had no idea the only way to get it was sadly through the emergency room gateway, but realizing this quite quickly once we were on our way, we went to town, as my grandma used to say.   We made it known to the PICU staff, especially an amazing nurse practitioner and the attending physician that we needed to assemble a team before we went back to KKI. We experienced the NP and attending as being the closest thing yet on this journey to professionals who were problem solving and collaborative. It was awesome. I felt in flow. I kid you not when I tell you that in the space of two days, Archer was visited by the JHH specialists we had yearned for and then some. It was as if the Red Sea was parting like Moses and the people, and our mere mention of a particular specialty that we thought Archer needed just seemed to show up. It was that way. It was intense. It had energy. It had good energy.   That Nurse Practitioner totally got it. We love her and are so grateful. We had to act fast while we were there and she knew it. An opportunity presented itself with our being there where we could bypass the waiting weeks or even months for an appointment with a JHH specialist, not to mention what I forsee as having to take the better part of a day in the future just to travel to and get Archer to one doctor visit. All these experts were a mere floor or two or three away from our location in the PICU. We were all in the same Zayad tower of the Blumberg Children’s Hospital building.   I could barely keep up with the stream of experts entering Archer’s room on Thursday and Friday. Archer was seen by, and we had real conversations with, a pediatric pulmonologist (proof will be in the pudding whether this is the right fit as we like the doc very much but Archer is practically a grown man with grown man needs in pulmonary as we have come to learn at KKI, not baby or young child pulmonary needs, so the dilemma of do we choose a pediatric pulmonologist or an adult pulmonologist continues, since he turns 18 in July, or…perhaps we choose both, but building relationship is critical to us, and we were getting conflicting information from our phone calls that peds ends at 18, while others say it can go until 22, while others say you don’t want peds at all, but physicians whose practices focus on adults, but yet Archer is not yet an adult, almost an adult, certainly in size, it’s all quite a conundrum. Honestly it’s a tough one because we need someone smart and wise and open to the mystical quite frankly because I know things are a happening with Archer. So, we will have to see where the best fit is as we think in terms of relationship, interest in Archer, collaborative, and … a believer, looking out for the best way to nurture Archer and get him whole again), an adult urologist for his Suprapub and catheter, which seems no brainer for us that it would be an adult, a cardiologist for his heart and pacemaker (not sure if peds or adult but we continue to be concerned about the hardware in his system that he no longer needs), an ENT for his tracheotomy, two dermatologists to problem solve alternative methods for dealing with Archer’s profuse sweating, an infectious disease doctor for the trach and lung infections which persist as well as other open wounds Archer has or may have in the future, a respiratory therapist who works at both KKI and the PICU to be an archivist on the decisions we are making, the other NPs from PICU, and a couple charge nurses. That’s a lot of doctor visits in a couple days.   They all presented well for us and we felt really good. Interestingly as I write to you, it never occurred to us to ask for and line up a good thoracic surgeon for Archer’s potential future DPT (pace maker of the diaphragm) if Archer’s lungs, muscles supporting his lungs and his diaphragm are not able to be strong enough to allow Arch to breathe on his own in another seven or so months it was estimated by Shepherd before Archer’s 3 days off the vent, or for his lifetime as the JHH pulmonologist said. She may not be a good fit. She may be onto something though with giving him more respiratory support at night. Archer had made so much progress in our last week at Shepherd that we were thinking, he’ll be weaned in another two weeks once we arrive at KKI. He should have been. Oh, how behind we are in his care. What has happened?   We felt the panic honestly of feeling like we fell down the rabbit hole at KKI. A strange place with strange customs. Or perhaps we are the stranger. They know not a boy like Archer. He is hardly an infant or young child. He is not on maintenance, he is not a child who needs to be wheeled to a gym each day for exercises. He does not fit on the laps of any of the kind KKI nurses as they love and stroke the babies. His extra long bed alone takes up most of the hospital room, they have had to move him for that reason. He is not little. His body is that of a man. They don’t want to bathe him it feels as they are uncomfortable. That is how it seems.   His body barely clears the bed when lifted in the Hoyer lift. He does not require a gaggle of workers around him for every time he needs to be weight shifted. He just needs a few competent and confident nurses and techs. He does not wear diapers. But he is still a boy, a young man. Adolescents are unique. They really are. Quadriplegic adolescents are rarer. We knew that as we accepted the invitation to go to Shepherd. We are so grateful we went. But what to do when all the best rehab facilities do not have high level of care for, e.g, pulmonary? What to do?   We thought KKI was the answer as they told us they had all the JHH doctors we would need. So, there we were at JHH, like Dorothy in OZ on the yellow brick road and she was just about to see the Wizard. We held firm and just knew that if we just got access to the folks Archer needs, he will breathe on his own. We have to assemble the right team. And Archer’s Army of prayer warriors who continue their loving loyal to the cause work of praying and living in gratitude for breath will help create the environment for that to happen.   As I write I remember two favorite memories of all those doctors last week coming to the PICU. The very personable urologist came in and plainly asked Archer if he could put his wrists together close enough to hold a pencil. Archer struggled with his hand splints, powered by his shoulders and biceps only as that is what he has working now. Almost, not bad, said the urologist as Archer was about 12 inches apart with a mighty struggle, his arms quivering as he tried. Urologist said, You’ll get there. He added, And when you do, I can teach you how you can change your own catheter.   That was it. It was solid, It was hopeful. He understood quads. He understood independence. Thank you. He can be on the Archer Strong team.   Then the team of dermatologists came. Now, why dermatology you might ask. Well, Archer perspires, sweats so profusely, and the medicine that helps him we are loathe to discontinue but… it may contribute to his lungs being dry, although we are not bought into that theory since we never had any debris in the lungs until we came to Baltimore and Archer has been on propantheline for months. Nonetheless, we are trying to be open and creative and the NP and I thought that maybe botox of all things might help Archer. Well, the consult consisted of a lot of stroking of the chin. A lot. As the doc thought and thought about Archer. Botox: bad idea. While it has been injected in armpits and groins to stop the sweat glands, it would have to be injected into Archer’s face where the sweating is. No studies on it. And we all know it freezes the face into for the most part a smile at all times. We are not playing around with Archer’s head and face. No way. So, we are experimenting with various antiperspirant creams. Anyway, the sheer discussions and thoughtfulness and inclusion and responsiveness felt good, like what we are used to professionally in our world pre Aug 5. They can be on the Archer Strong team.   I could feel the swell of a plan taking shape. And I could feel that we were in flow again.   It felt good.   Yes, it had come at a cost.   And Yes, it sadly was about to be proceeded by a bigger cost that you now know. But it felt good then and I have to give the attending doctor and her team at the JHH PICU a lot of credit. It was refreshing to engage. To think together. Oh the relief it it was sweet. Even if just for a couple days.   But the crazy part is as I look back, I honestly naively thought we needed to act fast so we could assemble these experts and get Archer right back to KKI for rehab, with KKI now empowered and feeling confident about Archer’s care since they would no longer have to panic about something they did not know about and we would have the care we needed so that we wouldn’t have to do the yo-yo emergency room routine whenever archer needed a higher level of care on any given day or night, and so that we could get on with what we have always wanted for Archer: good rehabilitation. Doesn’t that make sense? It seemed to. It still does to us. But that is not the way KKI views it. Essentially, my people will talk to your people is not how they want to parlay.   So our elation around our message to KKI, We have our team for Archer and for you! You can consult and work with our Pulmonary and Medical Team while you do your magic in your expertise of Rehab!, was in the wrong language or something. It was not received or understood by KKI.   Billy and I envisioned when we were deciding to come home, Come home, get the best care we can for Archer’s lungs at Johns Hopkins and get to the outpatient clinic at KKI, with a short stop at inpatient for the final stages of weaning, and while there, we will pull together the best care team we can find at JHH, form relationships and have a good game plan when we return home. That is what we talked with KKI about before we came. So, here we were, going into THREE weeks later with Archer having made no progress, and perhaps having been made worse, and now the possibility of the care team he needs finally able to materialize about to happen albeit in the most bizarre way: a false trip to the ER and now a stay in the PICU. I own that we are bitter. We are. Archer could have been weaned off the vent by now or well on his way. He is not and he has more issues.   And the latest: they put in the wrong size supra pub, had to get the right size. And today, they want to put Archer on more antibiotic because cellusitis. Cellusitis. That one is also on them. He is being made worse off.   Is it too much to ask, too much to imagine that Archer could have both a robust and competent rehab team alongside a healing and competent pulmonary and medical team. Both, not one or the other, but both. We thought that both would finally take shape, could finally blossom.   Back to our big powwow meeting still in the PICU with KKI….   Our chief conundrum remained: Who is in charge? Who makes the final decisions on Archer’s medical care? Who is knowledgable enough medically and wise enough to make these decisions? Who cares enough about our son to make fully informed decisions? Who has the necessary emotional intelligence and skill set and vision to truly help Archer heal and move forward?   It has been or has become so very clear to us that Archer’s lungs and his complete quadriplegia present a multitude of complicated issues for even the best of medical institutions. But the most complicated of all, sadly, is not his actual medical condition and care.   Rather, the most complicated aspect of all the medical care needed is the coordination of his care. Coordination of good care. Coordination of consistent care. Coordination of continuity of care. And most important than all the rest: Coordination of creative and inspiring care for our son.   Archer’s Army wants to operate and work and live in the realm of potential. Right? Absolutely! We are looking for the best, competence. But not competence alone. Oh no. We need competent providers who have hope; we need an excellent care team that has hope. We need to nurture the Creative Miracle. We need brilliance. Shiny brilliance. Brilliant believers.   Where are they in the wonderland of KKI and JHH? I know they are there. We began to feel they were emerging at PICU.   So I left you last as we anticipated what Billy and I had hoped would be a collaborative meeting with both JHH PICU, JHH docs chosen and KKI to figure out together all the coordination. The meeting was set for 1pm on that Friday.   At that meeting were assembled 13 medical staff from plus a case manager from PICU. Good.   During that meeting, it was like the Red Sea parted again for me, and I saw so very very clearly that we were missing a specialty. We direly need on Archer’s team another champion. A champion who can speak with and work with both facilities. Frankly, that could be a mediator, and there I was. But there are so very many barriers and I was just beginning to understand them.   I felt another sting of bait and switch. Billy perhaps felt it even more so. KKI told us Archer would have the care of expert pulmonologists from Johns Hopkins. That they are at KKI all the time. It was told to us that way. JHH doctors. I sadly never thought to have the presence of mind, nor did I have the prescience, to ask in the couple pre-transfer calls with KKI things like: So, you say KKI has all JHH doctors. What are the terms of those employment contracts? How often do they actually come to see my child? Do you consult from afar, reading the last progress note? How many days does their contact allow them to walk next door through a tunnel and come? Oh, only 1? Oh, and that’s just if they have a KKI contract? What about the other experts we will need from JHH? Oh, all the other JHH doctors you referred to are really next door but they can’t come to KKI? Oh, so that’s why you have to go through the Emergency Room route? Oh, I see. So, to get the JHH specialist, our child has to be transported in an ambulance by a medical team of special transporters (and if they’re not available by the Baltimore City Fire Department)? Just to get a look by a JHH doctor because you don’t really have that JHH specialty in house? Or you don’t have a contract that allows them to come? Or you don’t want a contract with them that allows them to come? Or they do not want a contract with you that allows them come? Or if they have a contract, they can only come over one time a week and maybe not even then if there aren’t other similar needs justifying their walking over. Oh, I see.   And I should have asked, And, tell me again about that tunnel you told us about how great it is to have KKI connected to JHH. If there is any care required for our child beyond basic meds and food maintenance, it’s through the emergency room, but you don’t use the tunnel for that transport because it’s so grungy and unsafe? Oh. I see. And it doesn’t have internet access. I see. So, we should expect when we come that our son will be transported by ambulance to go next door when he needs to see a specialist? I see. I’m sorry what did you just say? He will not be able to see any specialists until he discharges? Why is that? Oh, I see. You don’t allow it. Oh, I see. But, wait. I thought you told me one of the things we can count on when coming to KKI are the JHH physicians?   Boy, do I feel stupid. I never thought to ask these questions. So, who is in charge of Archer’s care when we return to KKI? Who is in charge of the plan for his rehab? Who is in charge of the plan for his lungs? Billy and I are all on board with supporting KKI with their expertise and being incredibly grateful for that expertise, as well as the maintenance aspects of Archer’s daily care. But the pulmonary. It is outside their lane of expertise. It’s never been a secret. It’s why we came. They knew that was the reason for the transfer. At our joint meeting was a huge power struggle as KKI insisted they were in charge of all decisions. But how, when they don’t have the medical knowledge for Archer’s situation, or have a consult doctor who does have the knowledge but who is not able to be at KKI on a regular basis to touch and see Archer.   I had to really push. I asked repeatedly. I also asked, no I begged, for a Pulmonologist who could visit and see Archer daily so we wouldn’t wind up back in ICU on false alarms or because KKI was not experienced enough to handle his needs, or not willing enough to listen to what we have been trying in vain to share with them about Archer’s respiratory needs and how to suction him out effectively. I asked KKI why they were not willing to reach out for consult and help for the benefit of a patient. I said, that’s what I do. I reach out if I don’t know. We can’t be expected to know everything. This creates suffering for Archer. He’s the one who bears the brunt of this crazy non collaborative way. Why can’t you work together? Why can’t you defer to expertise you do not have? Why can’t you stretch and do what is right and good for the child? We will honor your expertise, why can’t you honor others’?   With much appreciation to the JHH Pulmonologist who was on a 1 day a week contract to KKI (KKI employee for that day), she offered to consult with the JHH peds Pulmonologist we assembled, and much thanks to the peds JHH pulmonologist who said she could talk with the contract doc after each time she came to see Archer, and she would make herself available to me as needed. Those two women got it and were trying the best they could to problem solve. They stepped up. It was not outside their lanes either. I asked the KKI leadership if that would suffice, deferring to the recommendation of their contract pulmonologist who would be in consult with the JHH doc, who would be in consult with me. That was the best we could do, short of our having a pulmonologist on staff who could round and see Archer each day, as we had had when Archer arrived healthy and on the road to weaning. It is hard to say if the process decisions of our meeting will stick. My learning in this medical wonderland is that very few are oriented toward good process, it is indeed foreign to them. The way decisions are made, by whom and how. The way families and care givers come up with a care plan together. The way meetings could happen that could save hours of time in the long run and certainly prevent many medical errors, or when and if they occur, have them more likely to be forgiven because relationship has been established. Why in the world would the medical community not want to do things like this? They just don’t know how. It’s foreign. They could learn.   There are other learnings. Like the longterm psychological trauma that is created by “care” as they see it, standardized not thoughtful care, or decisions made without good process.   I told them, Archer has been betrayed by KKI and now JHH PICU. Frankly even back in September at Shepherd. Shepherd told Archer, You’ll be in our ICU no more than 3 days and we’ll have you off the vent in 5 days. Well, Archer proved to be much more complicated. OK. We can forgive that. We all had high hopes.   But when they didn’t meet their own goals for Archer, they turned Archer into the failure. Shame on that doctor. She wrote in the report that Archer was “a ventilation failure” and thus wanted to move him along, quickly up and out of the facility. She thought it was all about effort. Wow. Imagine if you can for one moment what that did to Archer’s pysche. Almost unconscionable. That he could effort his diaphragm to work. Her remedy after a mere 2 weeks was to discharge him. Home or to a longterm care facility where he would lie in a bed. Imagine. I can understand as they are a place of champions, physical athletes, like Archer, who don’t have vent issues. She just didn’t know the devastation she set in motion. But he and we recovered. But what has happened with KKI is different.   I told those assembled at the meeting, how KKI told us on the eve of transport that they needed Archer to come with a new tracheotomy. You know that story. They recommended it be done at Shepherd. Archer’s care team was bewildered as that was quite an unusual request since they did not change trachs. We told KKI Archer had not had a trach change except for Oct 4 and that’s because he coughed it out. KKI knew it was not Shepherd’s practice. Each was as mystified by the other’s practice. Both, of course, saying they had the best practice.   I told those assembled how that November 16 trach change ripped tissue out of Archer’s neck and was fairly traumatic. His body writhed and he didn’t recover for hours. They told him on the phone it wouldn’t hurt. Betrayal #1 I continued, Then, upon arrival, not on the phone call, you (KKI) told us it has to be removed and changed out weekly. This caused incredible anxiety in archer. You handled it by cajoling him into a different softer kinder gentler model. Then you bait and switched him. Betrayal #2. Very very very bad. Now fear, heightened defenseless fear, has turned into no trust. Why should he?   Then the trach change here at the PICU with the best Respiratory Therapist you have, who has the most experience and has done 100’s of trach changes. He too promised Archer it would not hurt. Cuff and cuff less and which type and so forth. We begged for lydocaine. PICU said they did not have any. The procedure; I did it with him, hurt Archer a lot. It took awhile to recover. I could also see the angry aggravated Oct 4 stitches that had never healed down in the stoma hole.   The RT told me, I have never seen a trach change as hard as that in my entire career.   I asked him to put that in his notes. He did apparently. The group assembled was aware of it. The worst he had ever had he said. The most painful he had ever witnessed. Again, the person at the brunt of all this is Archer. And, there was lydocaine available. They just didn’t want to do it. Betrayal #3.   I asked the medical team from KKI and the PICU assembled, Do you possibly expect him to trust anything you do?   You have done this to him, and it will carry over to other medical situations. Deep emotional injury is like that.   The contract pulmonologist again rose to the occasion when she asked, What can we do to gain back his trust?   That blew me away. That simple profound open question.   She was the angel in the room.   I thought for a moment and told them all that they could begin with an apology to Archer. But they shouldn’t if it were not very sincere and very heartfelt. There would have to be humility. I told them Archer is very forgiving.   The RT from Shepherd was the first who leaned forward immediately and said, I will! Bless that man. The only man in the room.   I said that would be good, but the main person to make the real difference will have to be the KKI doctor in charge. She hesitatingly said she would but with no one else around. Fine.   So, that and the who’s in charge issue remained unresolved as we saw it in our large group meeting. There was movement. The JHH experts put forth a pulmonary toilet cleaning plan for Archer that was not the random approach we had had since arrival. It was clear, It also changed dramatically what Shepherd had been doing, but it was a plan. It is to provide Archer more respiratory support at night, putting his vent setting on 10 rather than the 4 KKI has it on during the day (we had had 0 before). That is a setback, but it is a plan. The idea is to give Archer better sleep and health and to allow him to awake rested, perhaps for the first time. We’ll see. We are willing to be open. We are not sure that is the right course. It feels like maintenance to us, and as if that is what is expected long term. But we will consent, happy for a clear plan made with those who are knowledgeable and made with the caveat that we will revisit it. And the JHH contract pulmonologust said Archer will always have lydocaine or any other anesthesia at his request. God love her again.   But there was an unrealized opportunity at that meeting for KKI. An opportunity for clarity about decision making and relief that could have been felt by KKI knowing they are supported now and they do not have to decide everything. There could have been a clean slate as I like to say in mediations. A new beginning. We are not sure there was.   But there was clarity for me in another way that carried great meaning for us.   The clarity that emerged that felt wondrous like the shackles coming off my own eyes was that we needed that special mental health specialist for Archer. That clarity emerged as I asked again what I had been asking for at Shepherd and what I had been asking for at KKI. And we couldn’t get it. In that meeting as the words betrayal came to me, I also found the language, finally, that I needed for the request of ….a Trauma Psychologist.   It was really really surprising to me that when back at KKI, I tried to explain to the behavioral therapist, who was lovely and whom we like very much, about the importance of confidentiality in a therapeutic relationship for Archer, as I saw it at least. I noted that her role is to motivate Archer, and that he really doesn’t need motivation. Her quarters ($) and Amazon gift cards are fine and good, but what Archer needs is a therapist who is his therapist to work on things related to the drowning and the coping and the being an adolescent quad. I said, that doesn’t seem to be your role. Archer needs that and also someone who is his advocate and holds his confidences. I asked her to whom does she owe her duty of confidentiality. This was a very surprising and even confusing question for her. It turns out, she goes back to report to the KKI team what Archer is doing or not doing, said or didn’t say to her questions. That’s fine I said for her role. But what I am asking for over and over is someone with expertise in mental health, who is not a psychiatrist to put Archer on more meds, but someone in a therapeutic relationship who holds his confidences. He needs a confidential professional relationship, I kept saying. Someone who owes a duty of confidentiality to him. Not to a group of people who talk about him. As I explained this also again to the assembled KKI and JHH PICU team, they couldn’t grasp that concept. And it’s not because they are not smart. It’s perhaps because they are in the world of infants and young children. Again, Archer is caught between these worlds.   The behavioral psychologist got the closest to understanding this, but she said it would not be possible in their team. I said we have to make it possible, with someone else. Our son drowned. Our son has significant breathing issues. So much so, that he can’t even get to a quality rehab experience. His whole life has turned upside down. It’s extraordinary that he has not totally lost it or that we have not totally lost him. Think about it, I said. Think about it. Where is the specialist for Archer there?   The closest you have offered was a potential psychiatric evaluation. I ok’d that but said we were not interested in a psychiatrist who treats with meds. The visit was never set up in 2 weeks there anyway. How freaking long does it take when the talent is right next door?   So, with the 13 medical Specialists gathered around the table, the language came to me: we need a Trauma Psychologist. A good one. One we like and who likes Archer. The case manager said she’d work on that. That felt right and good. I pray we find the right person. Wouldn’t that be a wonderful person for Arch. Short term or long term. Not a flake. Someone schooled in the body, in trauma, in the chakras and the meridians of the body preferably. We may not find that person at JHH. I am looking and open.   So, I wanted to share with you about progress, one step forward, two steps back it seems, but it will get better. I have more to tell you later this week. I love you. I need you, Archer really needs your love and cards and visits, especially weekends and in the evenings.   We are so grateful for his life. We know there are new beginnings for us all every day. We each can begin again. I want to begin again. I want to begin again with KKI. Pray for their good leadership. No one in this equation wants to cause harm I know. We have to rebuild trust. Archer is awesome and despite all of this, he rebounds. He really does. He is funny when he feels well. He puts up with so much. He is kind. He is patient. He is needy too. We all are really.   Forgive someone today. Send us that energy. I am working on forgiveness too.   Please pray for us. By now we are probably the family from hell for KKI, but that is what it has taken. It is not over. We would like so much to be on the same page. Please pray that we will be soon. That they are not punitive. That they can open their hearts.   Please pray a rosary for us.   Sending love. Amen.


December 4, 2015   Archer Senft Family & Friends Update December 3, 2015 Thursday DAY 122   Prayer Warriors, Archer is in great distress and we need your prayers. We have been in the Johns Hopkins ICU since Tuesday morning and now admitted in the PICU (Pediatric Intensive Care Unit). Not sure how long we will be here. Archer had stabilized by the time we arrived but we have found other things and while we wish we had not been sent to ICU, clarity is emerging for us as to what we need and do not need.   Archer is in distress over a trach change that will take place at 6:30am Friday morning. I’ll explain about it later but needless to tell you, it’s enormously painful for him, for that reason they are going to scope tomorrow morning. I changed it with the head RT yesterday and it was awful. I could see that Archer’s sutures from October were still not healed. The RT said it was the most difficult trach change he had done in his entire career.   As we sit here in PICU, we know we want to return for rehab as soon as we can, but not before we have a good pulmonary team of Johns Hopkins specialists in place for Archer so we don’t have to continue what has felt for us like bouncing around without a plan on his respiratory. I know it takes time to get to know a patient but we enter the 3rdweek and now we will lose a week here in PICU.   The transition to KKI has been rough in just about every way, but mainly psychologically for Archer I’d say, and philosophically for Billy and me, and of course for Archer. Like two good people who either are just not meant to live together or two good people who have an opportunity to strip away and build anew, there is damage in this relationship and we want to address it and have it addressed. There will need to be repair work. Because we believe in conflict transformation, we believe we will all be strengthened if we figure it out together. Honestly and in the spirit of pushing for understanding and change. How we get there to figure it out together is the tricky part. A new facility, a new way to doing things. Now, in PICU, another new facility and another new way of doing things. KKI and JHU do not operate with the same philosophies either. But Shepherds and KKI’s could not be more polar opposite. And Archer is caught in the midst of it all.   And, you may have been wondering—I know at least some of you have been asking yourself because you have asked me—so when is she (Louise) going to blow? I hadn’t planned on it and have tried to contain it for many months but I have been quite aware that exploding has been quaking under my surface on many days. Now at KKI, after a week what felt like stonewalling, I blew. It’s been two very difficult weeks thus for both Archer and me, and by extension Billy and everyone else.   I have gone the emotional gamut in a day from relief to tight to fight to exhaustion, from anticipation to wonder to questioning to disappointment, from acknowledging reality to feeling let down, to anger to betrayal to blaming, to feeling shame and, I suppose, to feeling defeated and despair, and then feeling the hopefulness when I remind myself that we will rise from the ashes again.   I wouldn’t recommend this leg of the journey to anyone. But it’s the one that might have the greatest import. Something good is going to happen. We need your prayers.   Please pray for Archer’s caregivers that they recognize the kind of care he needs and they receive wisdom about how to formulate that care plan. Please pray for their open mindedness, their love, their thoughtful decision-making, their desire to collaborate, their strength to be questioned and probed and their ability to be discerning and wise and loving.   Please pray for our medical caregivers and for us that we can sustain ourselves independent and together through the tension and conflicts of different experiences and different worldviews as we all remain open to the possibility of influencing each other positively. Billy and I desperately seek the wisdom of those with expertise to create a thoughtful and wise plan. But we cannot operate under a regime that holds Archer down under their thumb due to ignorance, nor can we operate under a regime that has limited beliefs and hopes. We need a plan that prevents Archer’s going back and forth from KKI to JHU ICU on any regular basis. A plan that is bold but gentle, that is clear and takes into consideration what we already know so that medical staff in one facility do not need to panic and over react. We need a plan that we believe in and can support because we have trust in those who created it.   We don’t want Archer held back, and we don’t want him harmed. We seek the middle way.   Please pray for that plan for us.   And please pray for me as a mother, as your friend. It’s hard. Of course you know it is. It is. These last two weeks have been very hard.   And, it’s really hard to come home believe it or not. There was a certain easier quality about being away. Now that we are back, at least for me, I am absorbed back into regular life when life is not regular.   We have a demanding construction project exploding in our home. Decisions from choosing the right plumbing fixtures to ensure they are the best for Archer who could be easily scalded by hot water, a sink that has paddle handles with the belief that maybe someday Archer will be able to turn them on with an extension on his arms, a drain that needs a special trap in a sink to work like in the hospitals so that if anything is knocked into the sink, as it likely will be, that it will not go down a drain, grab bars that may someday with a miracle help to hold Archer up in the bathroom, lights placed separately over his bed that stay on all night dimmed very low to allow nightly lung care, what will probably be an ongoing baby monitor situation, enough receptacles and where located in the room and a new electric box to allow for and accommodate the electrical draw from the many machines he may still need now or in the future, technology needs and thinking that through, the Hoyer lift and the placement and type of ceiling lift system, the beams and rafters to support it, and the raising of the ceiling to accommodate it, how and where to hang a split separate HVAC system that will cool and warm both his room and roll-in bathroom with extra heat in the tiles and from a fan to regulate his body temperature when he bathes so he doesn’t have to endure the longer recovery from the wide temperature swings, to where to place a wall TV when he may want to change the bed around over the years, to the details of tile and paint and walls and closets and replacement paneling and how to fit all of his needs into this space, including all the medical supplies and monitors and equipment. And trying to locate the match to 15-year-old wallpaper we need for repair around the widened door openings necessary for Archer’s power chair in the house, especially those walls that are 100 years old, plaster and lathe. We don’t want to have to rewallpaper entire rooms, etc. And, meanwhile, Archer is in PICU. What a week.   We need too to make sure everything in our home is conducive to Archer’s healthy breathing. I need a faux wallpaper painter so we can paint a bathroom that cannot be vented to ensure the cleanest air in our home for Archer. We may need to get rid of rugs on our first floor if his power chair will get caught in them. There are meetings with Hoyer lift distributors and installers and power chair distributor reps and measuring and the meetings with our contractor and the various trades. Thank goodness for an angel who is helping with project managing because as any of you know, remodeling or when things get pretty torn up, can be hard on everybody in the family, including our cats and dog.   There’s also the aspect of sadness. Our house is radically changing. We have a concrete ramp now up the front of our house as of 6am this morning. Doors that have been recuing and turned around to swing out and not in to make room for the power chair, removal of furniture to make way. There is just a lot of loss. A lot. But I know it will be good. We will do as much as we can to help to make a good life for Archer, at least a good environment for healing and health and growth.   And then there’s the phone call and the ongoing calls and chasing paper work in the state and federal systems for Archer to receive Social Security benefits, based on his own income, but learning last week that the September application was denied because Archer, who has less than $1999 to his name was imputed with income that we have put into a 529 plan for his college education. The caseworker says it should have been “a slam dunk” with his level of injury and that the denial is ridiculous etc a denial is a denial and we have to chase it and fix it. Easier said than done.   It matters because Archer’s Medicaid application, that we also filed and which is pending, is hinged on the success of the SSI application. And on it goes.   We are having to make so many financial decisions when there are so few answers to many issues left hanging.   KKI told us we need a different insurance plan that covers outpatient because our plan doesn’t cover KKI. Navigating and shopping insurance is time consuming. We need that completed by December 15.   The folks helping us with the Model Waiver tell us that the forms we filled out almost a month ago were never received. We gave them to someone helping us and they were not sent. Alas.   We will be discharged home and we better have some coverages in place, especially nighttime help. But I don’t think that’s going to be covered. Wow. Archer has needs I may not be able to provide. It’s hard to stay in the moment sometimes. The moment is very crowded.   And then there’s my office and staff, and the time to manage from afar. And my clients. All of this is very much in the background when caring for Archer.   And things like a wheelchair permit for our house, which require a homeowner to go down to the City in person. Billy had to spend a morning doing that. And the permit to put in a handicap ramp. Same thing. So many of these things cannot be delegated no matter how much we’d like to do that.   So, the last couple weeks have had a lot of all nighters literally just trying to hold it all together. I only had to do a couple of those in Atlanta but here it’s the consumption of the construction project and the new facility transition and life. Us trying to keep it all together.   Archer is really keeping it together, and I wonder what he is thinking so often. He had 2 requests and so far I am only batting 500 at best. He asked me to advocate for him 1. No trach change, 2. Friends to visit . So far we are failing both. The system is big and feels against us. I think he is exhausted. The rehab work is/was 9am-5pm. We are trying to get in some school time, but it is hard.   Every once in awhile, I feel my eyes welling up. I know I need to keep moving but it just happens. I almost welcome it since it’s crossed my mind these last couple weeks how hardened I was towards KKI about the Thanksgiving filibuster. Have I become hardened? I hope not. I may have though. I think I’m just tired. Perhaps if I notice any hardening now, I will not wake up one day and realize it before it is too late to make sure I’m not an old grizzly woman. The advocacy is just so constant. I try to search for the flow. To advocate in flow. In alignment with something grander. How can we assist with what it is.   I opened a card sent to Archer while at Shepherd that had been forwarded to our home. It had beautiful nature scenes on it. We love nature. Nature is so good for healing. Yes, I still have essential oils in Archer’s KKI room and orchids and water elements and other goodies. I am now using Frankincense this time as I feel that we need to feel higher presence. Frankincense is a precious oil that often elevates the mind. Here now in the PICU room, I have a bottle of peppermint oil. But this particular card just undid me. There were three photos: one was in the forest, like walking through the woods, another was at the beach, like walking on the sand close to the water, another was in the mountains like hiking on a rocky crevice.   I saw those pictures, I felt those pictures. I know what it is like to experience each scene. I was flooded with despair. I was really flooded. Archer will never have those experiences. It just hit me so profoundly. The floor of the forest, soft and loamy, he will not have that experience. My shift in attention allowed my mind to remind me that he will have other just as wonderful experiences. But I still felt the deep sadness. The place of my own healing is not to move on too quickly but to pause and feel fully the remorse and despair I have for Archer. He will never be close to nature like that, able to walk on the sand, in the woods, on a rocky crevice. Nor will his power chair ever be able to take him to such places on such surfaces. I was just devastated. Those experiences have meant the world to me. And they have been so easy to have. Everyone should have those experiences. Isn’t it amazing to realize all the experiences you have had because your legs and feet took you there. You walked along the beach in the shallow water of the ocean. You hiked into the woods and along the bogs and stepped over the fallen logs and felt the crackling of twigs under your feet. You hiked the rocky reface and had to keep your balance and felt the exertion of climbing and the exhilaration of looking out onto a vista below, the fruits of your climb. That Archer will not be able to do these things just undid me.   What I know Archer has, though, is the power of his mind. Archer has had in his first 17 years of life the experience of the walk in the woods, the walk along the beach and the hike in the rocks and mountains. His memory will have to sustain him. His memory may invent something. We can simulate the sounds and feel in other ways for him. It was just so very sad to me. So very sad. I was just overcome with grief for him.   And then I said to myself, But he will walk. He will. Someday.   That belief helps. It really does. Even if it does not come to pass for a long time and after a lot of hard work, it helps. And I believe it.   As I’m thinking of it, please come visit him here in the PICU on Orleans Street where we will be til Monday or so. And Please come visit at KKI where we will be until January 6 or so. Archer loves letters and pictures too. Please send!   Since we are home, you may not think about writing him since he’s right here, but he is still in a facility in a fairly primitive condition and not yet hooked up to the Internet or his phone on any regular basis. He would love to hear from you. Please address any cards or correspondence to our home of course where a basket is on the front porch, or to KKI: Archer Senft, 3rd floor, Room 316 Kennedy Krieger Institute 707 N. Broadway Baltimore, Maryland 21237   So, it’s been a bit hard being home. But there are so many good things about being home too. The first and chief among them is that I needed to come home; Archer is not my only child.   That is another part of this journey. I am a mother to four other wonderful children who have been amazing. But it was time to come home. Dutch can only go so long without a mom on a regular basis. A household can only go so long without a mom if you know what I mean, even when others have helped us so much, and Billy has done a great job holding down the fort. But you know what I mean. Moms hold a lot of things together, the detailers of life.   Each time in the last week I would sit down to write you on my phone as I do, my language was spewing and scathing. I have been mad and I’ll write you more tomorrow about that. My anger runs the gammit from all that is wrong in healthcare and standards and protocols and institutional arrogance and “our standards are best and better than yours/the other facility’s” and each medical institution proclaiming they have the lock on “the best” whatever it is. And, Archer, again has been on the blunt end as a recipient of standards that did not help him, and potentially harmed him.   There is a lot more to recovery than just the medicine.   So, when Archer desaturated Tuesday morning of this week, their assuming the worst lens had them react by calling the Baltimore City Fire Department who showed up in Archer’s room to transport him one block to the JHU ER.   But now that we are here, there have been a lot of positive things. We have experienced JHU Pediatric ER, we have experienced and continue to experience the PICU. We love the folks in the PICU, we love their leadership, their attending, their nurse practiioners, their respiratiory therapists and their nurses. Billy and I have asked for certain folks for our team and they have responded in spades. Our team is assembling. It’s why we wanted to come to KKI, for the JHH team and this crazy stint in ICU was the perfect catalyst for establishing those relationships. We hope to have later today a successful collaborative meeting between the new experts assembled and the KKI team.   Back to the ER, Billy and I asked for about four hours for a CT scan of Archer’s lungs. Why not? We could see he was stabilized as soon as he was moved (his body and lungs benefits greatly from being turned and moved and upright) and was back to base line within an hour of arrival. Indeed by the evening, he was better than baseline as respiratory set his vent settings back to where they had been prior to arrival at KKI. That felt really good to Archer and to us. Now, maybe we can make progress.   Billy and I wanted to see what was up with the blebs. We know they are not going away as that is what each pulmonologist confirms, but were there more?   The most remarkable thing. The CT scan from Atlanta with the 22-23 grape size to tangerine sized blebs on both the upper and lower parts of the right lung, along the outside of the lung as well as on the inside lower lobe, were…. Almost gone. Looks like 2-3 remain in the upper lobe.   How to account for that? It’s stunning. Well, we know what that is: thank you, prayer warriors. Fr. Bruno Lantern hears your pleas for intercession. And God and Jesus hear you and Fr. Bruno. They are all with us this journey.   Archer’s lungs are going to do some miraculous things. That is the first marker.   Now, the other side of the craziness is that in the lower right lobe now is something new. Something “highly unusual,” something perplexing, something they are referring to for lack of a better term: debris. They say it’s dried up stuff that is stuck very deep in the lungs and throughout the many many tubes in the trees of the lungs. It was not on the last chest CT at Shepherd. What in the world is it? Why it is there and how long it took for such debris to accumulate who knows. We think about two to four weeks. But who knows.   Archer had turned a miraculous corner right before our transport to Baltimore when he all of a sudden at Shepherd blew consecutive tidal volumes of 800, and tolerated his PSV moving from 20 to 15 to 13, PEEP of 5. It was enough to start weaning, and he spent three days consecutively off the ventilator for up to one hour. While it was probably premature and wiped Archer out, we knew he had the capacity. And, he’s been breathing room air ever since, until we got to KKI where they say he required oxygen on a regular basis. But now, in the PICU, he’s back to breathing room air during the day thank goodness. It’s the nights we want to explore.   We know Archer’s lungs need to be cleaned out really well especially in the morning and the night before he goes to sleep. We’ve come a long way. He has to have good lung suctionings, with a lot of saline and with going down 5-6 times into the lungs. As horrible and awful as they are to observe, they have become a way of life for us now. And we know they keep Archer alive and breathing. We wanted KKI not to be so tentative. He’s not an infant or a young child. Skillful and gentle pulmonary therapists, but not tentative.   Most of the methods, and I am not exaggerating when I say most, are different in one facility than another. And honestly, there is nothing standard in the medical community that we have experienced, now in 4 facilities. If anyone ever tells me there are protocols that are adhered to in all hospitals for, e.g. Something as simple as tracheotomy care, I will tell you that that is false. There is not. There are perhaps many protocols that work in each hospital and which could work across hospitals if they adopted the same methods of the other or informed each other of what they do, but that is not what happens.   It’s really curious because there is a handful of life long learners at KKI who gleefully proclaimed that they were learning something new, eg. They got trained last week in powerchairs because they had never had to know before until Archer arrived, said one nurse enthusiastically, and another respiratory therapist wasn’t familiar with use of the small flange as a “yonker” on the deep suction tube that is the opening that you hold your thumb over to ecclude it such that the suction tube will have suction, and rather than having to switch it out with a wand suction each time Archer needed to be suctioned through his mouth, you could offer this the flange yonker and it’s very efficient. I mean, it is a simple trick and very effective; that was a Shepherd method. I took it for granted as it was all I knew.   Billy and I learned at Johns Hopkins ER that they use a tube for suctioning that is a French 14 which is wider than what Shepherd or KKi uses and it worked very well on Archer and he noticed the difference immediately such that his suctions went from 5-6 tries each time to 3. Bigger tube gets more thick mucous. That was a JHU method.   That is the tip of the iceberg on what could be shared best practices. There are a bunch. But it seems that a turfy and closed attitude causes a certain hostility rather than a curiosity about different methods. It’s a worldview of difference. I promised myself I would not go down this path tonight with you as I have a lot of strong views on it, so suffice it to say, I have only found peace through the help of my rosary and a shift to believing that these days are mere bumps. Just bumps along the way. Something bigger is happening.   And it is. Archer is talking more and more!   He began at Shepherd when we slowly took air out of the cuff around the bottom of his tracheotomy which is inside his bronchial passageway. When the air is in, he is not able to pass air through to speak. When we deflate the little balloon, it allows air in the passageway that allows Archer to speak. He’s not speaking up a storm yet, and he may never on a regular basis as that is usually the excitable side of Archer who does that. But he has been talking and I think it’s fair to say that he sounds at least a bit like….Archer. So, here’s how it works. He has to gulp in enough air for a word or two or three and then let it out and take it in again. So, his speech is rather labored and a bit hoarse and definitely not loud. (Although I am proud to tell you that I stood out in the hall a couple nights ago talking with a new friend and he was in a bit of distress and called loudly, Mom!) It was great really, as it was truly a very first time he did not click his tongue to get something he needed.   That’s pretty big really. I so hope he finds his voice more and more and that you help him.   FT (friends and family therapy) is more critical than ever. Please come visit Archer especially on weekends or the evenings during the week. KKI is very very strict sadly for us that you are not able to visit him in groups larger than four people, including us, on the floor, not just in his room, but on the entire floor, at any one time. And, they will actually send the security guards up and count the number of people in Archer’s room and wait outside his door for what reason I am not sure, but this is what Archer and friends have reported. I finally witnessed it myself when the guard actually came to a tiny parent’s lounge to find Billy and me asking us to leave the unit because there were already four people in Archer’s room. It’s true. The guard actually came to the parent’s lounge to find us and asked us to leave the premises! We couldn’t figure out what in the heck he was talking about asking us to leave. It was bizarre. We were giving the teenagers some time to themselves. I don’t know if you remember being a teenager but we sure do. And time hanging out with your friends, really doing not much of anything but hanging out, was precious time, good time, fun time. So, we want Archer to have every bit of those experiences. That is not at all the accepted norm or seemingly even understood at KKI. I hope we are wrong about that and have an opportunity soon to discuss it.   And Archer’s work and recovery has been made more difficult by protocols that seem artificial or for very young children and do not apply to a teenager almost young adult. But we will hopefully have some good collaboration now that we have finally assembled a team of Johns Hopkins experts who can advise and guide us on Archer’s pulmonary care. We hope to establish a clear chain of command on pulmonary. If you can’t breathe, you can’t do much else. And if you are not taken care of with appropriate methods to breathe, with confidence, your chances of breathing get diminished. We need a plan. I think as of yesterday and talking with pulmonary, we are getting one.   I liked the pulmonologist and the pediatric attending at JHH PICU very much. They were knowledgeable, competent, open, earthy, direct, thoughtful, smart. They had a plan they could clearly lay out based on what they knew so far, they acknowledged readily what they did not yet know but would soon know after they studied Archer’s records; they seem familiar with what had happened to Archer plus what we filled in which was a Godsend that they asked and were curious and wanted to hear. It was a first, except for the doctor I like very much who will be our chief outpatient doctor who knew of Archer because of a friend we have in common. Those relationships have been very dear to us, very precious.   So, I wanted to update you on this. Two biggies: blebs mysteriously and joyfully diminished and Archer’s talking! Two bummers: more time in ICU, seemingly taking two steps backwards, maybe three, and trach changes.   You might say, What are trach changes and why such a bummer. The trach is that banana shaped plastic tube inserted into Archer’s neck that allows air for breathing and talking. Well, Shepherd’s best practices didn’t have a tracheotomy change. We arrived there with a trach that had been placed in early August at Atlanticare. It remained until October 4, about 6 weeks later when Archer was in distress at Shepherd and they changed it out. When they did, it was a horrible ghastly awful experience. Imagine, a 4 plus inch long banana shaped tube that is about as wide as a big Gulp fat straw, maybe a bit wider, with a clear balloon wrapped around the bottom (the cuff) that has a filament string on it for inflating and deflating, that has a handle of sorts on the top that is inserted into a hole in the middle of your neck. A pretty dag gum big hole. Got it. And imagine that it’s through this tube that all of your breathing and saliva and mucous and sputum and flotsam and get sum gets channeled. Now, imagine how your body begins to heal and what it also does to a foreign object that is placed in it. It doesn’t like it and wants to expel it or grown around it. And indeed that is what had begun in the 6 weeks. So, when they went to literally pull it out and replace it with a new one, yep, you got it. Out came in a number of gruesome tugs a lot of blood and skin and tissue and mucous and ooze etc. It was enormously painful.   So, when we were told by KKI on the eve of transport from Atlanta to Baltimore, literally 4pm on November 16, that they required Archer to have a new tracheotomy, everyone around the conference table at Shepherd on that call just looked at each other in disbelief. What? Seemed to be the sentiment. And no one wanted to do the change. We explored the topic a bit more. As for me, I had no idea what for or why, all I knew was that Archer’s eyes got as wide as saucers and he said, No, Ma. I’m not doing that. It was a dilemma.   It got worse.   So the KKI folks over the phone said it could be done at KKI but they would recommend that it be done at Shepherd before we leave since Archer would be with caregivers who knew him and because the transport may have Archer not in the best of shape to have it changed at KKI. That latter comment was a reason upon reflection that I never ever had it cross my mind to ask, And so, What are the KKI protocols for how often a trach is changed. It plumb never occurred to me, never to ask. It was not the protocol of the New Jersey ICU to change it out and it was not the protocol at Shepherd. But we came to find out in the rudest awakening kind of way that it was the protocol at KKI, and not just a change, but a weekly change. Yes, a weekly change.   You can imagine what that has been like for Archer.   Archer asked me point blank just like this, Ma, What Arch? Ma, (tears in his eyes), I need you to advocate for me on this.   He also asked me in the first few days after we had arrived related to his being able to see his friends, Ma, I need you to advocate for me to get them in here .   Ah the familiar ring. Will you be my advocate. I am a sucker for that for a loved one.   This time the issue was friends, for time with friends, after we learned that Archer’s first two visitors ever at KKI had been detained by security in the lobby for over an hour and then went home and we never even knew until I checked a text message hours later. We were distressed and couldn’t understand why. We were told there were only to be two in the room.   So, as you know, it is now four, but they have since defined that to be four people on the floor. The entire unit. It’s true. So, I literally go to a different level and find a chair to sit in so the kids can have some alone time and some space. We are anxiously awaiting the time when I can take Archer out of his room. It’s been two weeks and KKI has not allowed us to even go down the hall. It doesn’t matter to KKI all of our training at Shepherd and all of the trips Archer has taken out of the building and into Atlanta like the movies, Starbucks, the Zoo. And it doesn’t matter that my neice who is a pediatriac nurse at JHH will be there as well.   KKI has their protocols and they demand that two caretakers, yes two, have to be respiratory approved, and we had to pass all kinds of other tests, before we would be approved. Ok, We’ll do that. Sign us up and let us know who has to watch us do what. We scurried around to have our training acknowledged and approved and literally checked off a list we had asked for.   But no, we found that their list would grow or change as the days went by, and that I’d ask the nurses to check me off and they wouldn’t; they all literally said, I’ll get it later and they never did. It was a moving target, constantly. And then we were told we had to have trach change training. Oh my God.   We had to what? Trach change training. That was how we learned for the first time on day three after our arrival when Archer was sill in a bed and we asked when he could get a power chair so we could take him out, and we were told all these rules and about the trach change. And then we learned that they only do trach changes on Tuesdays. Stab.   The respiratory folks came in to talk with Archer and promised him it would not hurt, they made a very big deal about the brand of trach they use versus the brand Shepherd used and how theirs is much softer and more malleable and did not have the additional bulbousness on the end but that that is in the top of the trach etc. They made a pretty good case and I was on board convincing Archer would not be anywhere near as painful. That was over about 3-4 days that conversation and the cajoling of Archer and wooing him to accepting this fate but with a kinder softer version. We were on board because it was our ticket out of jail for Thanksgiving. They had made it plain that their rules required us to be trach change trained. Got it. We didn’t like it at all but we complied, making it known to every respiratory therapist what our intentions were and why we needed to be present and part of the first trach change at Shepherd.   Billy and I diligently set about showing all that we knew and have learned and have been doing re respiratory suctioning etc, to meet the other standards they told us about. But then we were told that we not only had to each have a trach change training, but that we needed to each have two. She said four separate changes. So that was impossible under their once a week policy. It actually might make Christmas impossible. I am honestly concerned about Christmas.   Oh my Lord. Archer was thrown into a tailspin. And there we were, in jail again. It felt hostile, penal, arbitrary, not on the same page, disjointed, against, mean and petty.   And then there was the ultimate irony. Exactly that which we had been asking for a consult with an ENT Dr, and were not wanting Archer to have to have at all if not necessary, became that which was exactly what we had to do to be sprung from jail for Thanksgiving. But the trach change never occurred.   So, as we practiced trach changes with the Bivona trach on a dummy the day before, gathered our big kids for the practice sessions so they too could get checked off so that Archer would have options on being taken out and would have a number of family members knowledgeable about how to care for him, we planned for the real deal the next day, last Monday, exactly a week from the time the trach at Shepherd had been placed.   We met in Archer’s room, Archer was in his power chair, he was not happy, but has succumbed, he’s angry he has to have it done, he’s said he’s only doing it so he can go to Thanksgiving.   I go to check the trach size, which is always an important thing to do but was admittedly a bit artificial since we had been practicing with the trachs that were given to us by KKI. But what do I see on the box? Shiley, the OTHER brand that KKI had talked so poorly about –the brand Shepherd uses–and had said how hard and cold and uncomfortable it was etc in order to build up how much they liked their brand, and to convince Archer. The worst part is that I had been sucked in to supporting KKI for the weekly bivona trach change. Now that was not coming to pass. Well, it was a bad scene. Serious bait and switch. I was furious absoutlye furious for what they had done to Archer. This is about trust at a very basic, very primitive level. Did they not understand this?   It was a very bad scene. Shiley? What? Someone in the gallery of doctors and medical staff that were gathered to watch us perform the trach change, said, It was recommended by the ENT whom we would have a consult with the next day. It was a first that we were hearing any of that. The ENT? A consult? It was not a first that we felt baited and switched. It just seemed a series of that. Or stated differently, they betrayed Archer. They made it all sound good, like cajoling a young child to do something supposedly good for him or her “just this once’ and then the child finding out later that he/she’d been tricked. I remember it well, because it’s so easy to do to children and I watched other do it, and I vowed I would try very hard to not do that to my own kids. How can trust be established based on that? It cannot or it is very hard. Archer was betrayed. I felt that is exactly what had been done to us, but this time with grave consequences. And graver still, a blatant falsehood, as I experienced in that moment.   So, what would you have done? I blew a gasket on them all. It wasn’t pretty. And I had more, a lot more. But I began to feel sick to my stomach. I didn’t like what I was doing or saying. But it was as if I couldn’t stop myself. I really meant every single word I said, and I really did not. Conflict is like that. The experience can be so disorienting and alienating. So cloudy and so crystal clear but through a very narrow lens. I knew it and I still couldn’t stop myself. I am not sure I really wanted to stop. It was all true. But it was as I also know only half of the truth or a part of the truth. They had their truth too. And there were I am sure more than just my one truth. Isn’t life and conflict crazy like that?   I cannot recall a time in recent vintage where I so desperately wanted my own space, anywhere but somewhere where I could be alone and just ball and cry and wail and fall apart. And… there was none.   Nothing. Every door at KKI is under padlock or lock and key and there is only one small place where parents are permitted, the parent lounge to be shared by the parents on the unit, a small room with a refridge, coffee maker, microwave, bathroom shower and lockers. There is almost always at least one parent sitting at the one small table. There is no other bathroom, no other room. I thought my head would burn off.   I took the elevator down stairs to the lobby. It was cold and wet outside. I had nothing but myself. No id. No wallet. No keys. There was absolutely nowhere to go. Or way for me to go and return without having to talk to someone and what I wanted was to be by myself. I really thought I would combust.   But I didn’t. Just like all the times when you too may have felt like you wanted to do the same thing. I felt like my heart was trampled on. But more importantly, I felt licked and spat on. I felt I had met my no return point and the place where I could take no more, and had no more to give. I felt I knew my breaking point. I also knew I would need some time to physically stay away. So, I went and sat on the john of the women’s bathroom in the public part of the lobby. I just sat forever. It was a bit funny because it was the kind of toilet like on a motion sensor that if you move it flushes. Well, it continued to trigger like it was flushing. I laughed at the metaphor as I sat on my skirt still just holding in the tears because I knew that if they came, it would be a long time before they dissipated and I would probably be loud. It wasn’t safe where I was. I needed to go home. I needed to be home.   A couple hours later, I went back upstairs, found my pocketbook, said my good byes and left for the night.   It was truly the day of horror.   But I went back of course and resumed. Now, a week later we found ourselves swarmed by Baltimore City Fire Deparment as they brought Archer to the ER, now in PICU and another cold room! This time we have only our street clothes as we haven’t set up shop and hope we don’t have to.   Last night as I worked to cocoon myself in blankets, I realized that with only a couple thin hospital blankets, I jumped up as if I was struck by lightening to go to Archer who was sleeping and feel his body. It felt hot. Yep, this room was not cold enough. I went and adjusted the thermostat and called a nurse to get a temperature reading. He was 101.3. Yep. Even lying with only a hospital gown on, his legs and arms fully exposed to the air, Archer was heating up. Turned the thermostat to 64.   So, conversely, this morning after shift change, the new nurse arrived, took Archer’s temperature and called to me at the back of the room in the early daylight, Hey Mom, does he usually run low? We were separated by a lot of monitors and such with this new room configuration in the PICU with a window and a built in bench bed all behind the patient bed in the middle of the room. I called back to her as it seemed we were very far apart, maybe the equivalent of 15 feet, Why, did you just take a temperature reading? I could see her through the wires and tubes but I couldn’t see Archer as the bed board was blocking that view. She said, Yes and… as she looked at the digital readout from her forehead swipe, she said 35.1. I said, 35.1, ok… so what is that in Fahrenheit? Hmm, well, let’s see, as she fumbled in her pocket for her phone.   The funniest thing happened. Archer, who we both thought was sleeping, pipes up very matter of factly and clearly with his strengthening voice, and tells her, Divide by 5, Multiply by 9, and add 32.   What? said the nurse and then added as she looked at Archer, Say that again. He did. And she and I did the math on our calculators on our phones. 95.18 degrees. Archer was running low. Too low for my likes, so I asked her if she could cover up his lower body and feet with a sheet.   Thanks, Arch.   It made me smile.   Thank you, Lord our dear God, for our faculties, our minds, our memories, and our ability to retain information. I thought about that and the peace and joy our minds can bring.   And the torture. The memories of being hurt. I reflected in that moment of the memories of the recent two weeks since our arrival that I was clinging onto and that were painful and made me angry. The authority. The power over us. I wanted to release that. I really did. It is astounding to me what prayer and a shift of attention can do to alleviate that torture from held on to memories of pain. I turned my thoughts to the rosary. In my head as I often do and I began reciting the Our Father and then the first decade of 10 Hail Mary’s. I often do not finish a rosary that I begin in my head. It makes no matter. It is so comforting. My mind is focused on the words and I try to think of the meaning, other times the mere focus on the words without meaning is enough of a distraction to me to be calming in the moment.   What I have found myself doing the last two weeks at KKI which I have never done before I realize as I share this with you. As I hold my rosary upon going to bed saying the 5 decades of 10 Hail Mary’s each decade, I ask God and Mary for the most basic things. Like I asked to please help me calm down in the first decade. And then I asked for guidance to remember to call upon Fr Bruno for Archer as I will forget. That was my second decade. When I got to the third decade, I asked for peace about the home accommodations which are taking enormous amounts of time coordinating and being back and forth on location and fast decision making and fast finding things in what would have been many months of thinking about how to redo a side of our house that is being done now in a matter of weeks. And it is so very expensive. Even with our amazing contractor who is doing the whole project at his cost. And the donations that have been so generously given to us or pledged to us for the electric lift, the generator, the plumbing supplies. It still leaves $80,000 of cost. Reciting that decade, I felt a message that it will be alright. I could feel Mary’s arms around me saying, it will be alright.   And then there was the fourth decade, and on that one I began to cry again. Please God and Mary give me the strength to let go and sell my building. We need to. We have to. I so don’t want to. It’s listed too low and I know it and we have a buyer within a week of listing and I just don’t want to do that. I can’t. What will happen to Dano? Where will I practice? What will I do with our staff? These issues haunt me and I feel the hot sting of tears as I recall it again.   That decade I don’t think I finished as I must have fallen asleep remembering the incredible kindness of a man I saw in the grocery store just a week or so ago, days before Thanksgiving. We had been in town two days. It was the Thursday of the week we arrived. I was comforted by the routine and doing something I like to do and that is also so easy and pleasant, taking Dutch to school. I usually go to Mass thereafter but that usual has changed for sure. I needed to get back to KKI and I also needed to stop by my office to see how things were, to pick up a file. I pulled up and there it was, a For Sale sign on my office.   I was stabbed. I just couldn’t imagine it. I had consented but I had asked that there be no sign. At that point, I didn’t want to sell it at all. Why was I having to do this? I was mad and sad all at once. I left and drove to Eddies to run in quickly and get some coconut yogurt for our hospital room and some milk for Dutch. I was in line at Eddies and the thought of the sign was ever present on my mind. I was fragile. As I went to check out, I had neither a pocket book, a wallet, nor could I even remember our account number. Can you believe that. I was just blank. I had left the house with just my keys. The clerk said she needed the account number if I was going to charge it. I couldn’t remember it. I asked her if I could give her my address. She said she needed the account number. I stood there in line thinking hard of what our account number was, not having used it for so many many months and usually not using it as we have it set up mainly for the kids to use. But honestly even if I had used it, I was blank. I was just completely empty. I surrender.   I said to the clerk, I am so sorry. I can’t remember. I began to gather up the yogurts and the gallon of milk for Dutch to push them aside out of the check out lane. Behind me in line I heard, Hi Louise. I turned in this uncomfortable moment and there was a man I know but not well. He had been in one of our mediation and conflict transformation skills courses many years ago. He said, Don’t worry, I’ll get it. That broke the dam. I felt the tears. I needed to get out of there. I was so grateful and so embarrassed and so wanting to look him in the eye and so wanting to shield my eyes as the tears rolled down my cheeks.   It was ironic, because after many years, I had just seen him at one of the events Billy and I returned home to a few weeks ago, at our church event before the fundraiser for Archer event. When I had seen him then, he graciously came up and introduced himself and been very kind. I remember thinking then in the midst of all this craziness with Archer’s injury and the gathering and back and forth life that someone could pause and tell me he had learned so much from me in that training and it had changed him for the better. He told me how he had just retired from his law practice and I learned a bit more about him that night. Now, in Eddie’s as I had no money, was blank, using every ounce I had to contain the well of sadness in me, there he was again. This time, I was learning from him. Hi Louise. That was all it took. I felt the tears spilling and he said, Please, please let me get that for you. In my shame, I felt his love. How can or will I ever, how will our family, ever begin to repay and thank you all for your kindness and generosity. I felt honestly ashamed that I have become so dependent, so needy. That I couldn’t even have it together enough to remember my account number to buy milk and yogurt. Pitiful. But that’s the way it is. I will never be able to repay or thank everyone. Please know our family is so grateful.   This man was so gentle and matter of fact to the clerk as he paid her. I could barely look at him as there is something about kindness that just melts me and I was still trying to contain but not very well as the tears were rolling down my cheeks. I turned to him and whispered, I am sorry you have to do that. Thank you so very much.   I left and drove to KKI. The kindnesses. The angels. It is amazing to me time and time again the way gratitude crowds out my bitterness and even my anger. At least for those moments.   I was relieved in that moment. He gave me relief. It was a raw morning for me and he brought such relief. Memorable relief. How great the mind is to be able to remember the kindnesses that have been given to us. Just a shift in attention that will sustain me.   Think of a time in your life, maybe today, where something is raw for you. And, think instead of someone who has given something to you that has been meaningful. Thoughtful. Changed how you felt about something. That is such a gift. Think of how that made you feel in the moment, in the reflective moments afterwards. How your body responded differently when the screen of your mind plays that memory rather than the painful one. Kindness. Good people. God shines through in each of us, doesn’t He? It’s such an amazing part of our humanity. This plane of existence that can be so painful can also bring us such joy.   So, that is where we are now. Still in the Pediatric Intensive Care Unit. It all ended up being a gift too honestly. We were able to get the CT scan we have wanted of his chest, and to assemble the pulmonary team we need and to begin our work collaboratively. It actually feels good in this moment.   Another irony. Who in the world wants to be in ICU. And to deal with and find doctors who have that rare combination we are always on the hunt for of genuine interest in our son and his well being beyond just the medical as well as their expertise that is truly expert and competent for his situation and his age and his capacity. We will see and remain open. But I have to tell you that three of the people on Archer’s care team now, who have direct say and impact in his life are people we know through our work and others. It is such a relief to have that connection on what is as everyone says, a very complicated boy.   When the pulmonologist and nurse practitioner gathered for our first collaborative meeting, who else was there but a physician who had also been in one of my courses years ago. I had asked earlier in rounds if everyone could identify themselves for me and when she said her name, I looked right at her, yes, I knew that woman. It had been a number of years.   After we met she came and met me on the side and said something so incredibly kind that our training and approach had changed her life and made a big difference, it was very meaningful and she is now married and the other physician she attended my training with is now her husband and they have a child now, and it was so wonderful to hear a bit about her story. The connections are so powerful. I felt a piece of home in that room in PICU. Whenever I hear a snippet of information about a nurse or therapist or doctor that is personal, like the ages of their children or that they have children at all, it matters to me. It really does. It softens and makes them real. And honestly, I think reminds them that they are real and human and we step into the same pool of humanity together. It doesn’t have to be the same experience, but it is the same pool.   Archer will do well. We will get the debris out of his lungs. We may have to slow down his weaning and set it aside altogether in order to. I feel that is what will be recommended. We have the real collaborative challenge later today when this team will meet with KKI team.   Archer has tasted the sweetness of being off the vent and knows it is possible. The pulmonologist says he may be on it for his life. OK, we can handle that reality. But she will need to be a believer in miracles to be on our long-term team. I think she can be. We haven’t had that conversation yet. We are working on the short-term relationships hoping they will be the long-term. And we are working to put the bow on the box to send it back to KKI to get on with rehab.   Archer will soon have his own say about this, more than he has now as we are preparing him to be an advocate for his health. He is already by nature as he is exacting in what he remembers and retains about everything that has been done to him by whom and when, for the most part, re his medical history the last 4 months. Archer has incredible mind.   I’ll leave you with a request for Archer, a very specific one for this week. Please pray that Archer will not be psychologically tormented by the anticipation of painful procedures. Our ENT doctor has said he will personally come to find out what is happening and to see why Archer still has sutures in his neck unhealed and why the trach change was so very painful. That will be tomorrow morning. Archer is dreading it. But this doctor is also wanting Archer to be able to see his friends and has a daughter at McDonogh and will help us learn what we need to so the team at KKI can have confidence their protocols were satisfied.   Pray that we can take Archer home for Christmas. Pray that you will be surrounded by your loved ones for Christmas and your holiday celebrations. Pray that Archer will be loosened from the bonds of dread and anticipation and mistrust of the medical profession who has falsely promised him no pain, where he feels tricked. And he has no way to fight that. He can’t run away, he can’t put his hand over his throat. He can’t even voice his No because during the trach change, all the air is removed from the cuff, all of it. So, when the therapist and I changed his trach yesterday, he was left with a harrowing cry as he threw back his head screaming, I mean screaming a dreadful and silent, NO. Nothing came out of his mouth because it was impossible; the cuff was fully deflated. His face was torked and twisted and the veins in his neck bulged. I told the therapist to stop. We did. I let Archer regain himself and we did it together finally. I pulled it out and the therapist put the other back in. It was very painful. And the respiratory therapist said it was the most difficult trach change he had done in his entire career. Oh, Arch, what are we going to do? Nothing is easy or not complicated.   From now until tomorrow morning, please pray for relief. Please do something kind for someone else. It brings relief and together we can create a kindness field, and think of Archer and send that kindness field of energy his way. We will always send ours back to you. We have been honored to include some of your sufferings into our prayers as well.   Thank you, God and mother Mary and Jesus who gives us rest and comfort. Let us all rest in your peace today even if just for a moment as we ask you for peace.   And a quick little prayer for the medical team to have wisdom when at the bedside trach change procedure.   We will also have a meeting with the KKI and PICU team we have assembled. Please pray that that goes well too. There is always so much going on that your prayers truly guide me.   Amen. Sending love


Thanksgiving, November 26, 2015    Archer Senft Friends & Family Update 11-26-15 Thanksgiving DAY   It felt so good to be home when we touched down over a week ago. It felt so so very good. The water, the boats on the docks bobbing in the bay I could see from the window of the small jet, and the contrast of blue and green, punctuated by a couple trees with golden leaves and a few more with no leaves at all. I was struck by the seasons. We have passed through summer, fall and now the entry into winter.   We came full of anticipation and gratitude that our flight was safe and we were home.   We remain full of gratitude although it has felt cold and stark as our transition at Kennedy Krieger has been difficult, like landing on a different planet. I have much to say about that but that will be over the next days and weeks. Suffice it to say, it feels like we have come to the land of rules and protocols and rigidity and fear. It’s been 10 days and they still have not allowed Archer to try to breathe off the vent, nor to use his mobile arm supports that are the beginning of his independence. They say about Archer, He is a very sick boy.   Yes, Archer is a C4 ASIA A, complete quadriplegic, with collapsed lungs, a pace maker and now a lung condition. But he is also vibrant and making a lot of progress.   His first visit by his peers at KKI was followed by a text to me that said, Mrs. Senft, he’s hilarious.   He’s hilarious. That was like nectar to me. Archer returning to himself. Regardless of the transition bumps, he is returning to himself.   Yes, he is still fighting to breathe on his own without the thick mucous, but he is making progress and is committed to his now and his future.   Yesterday when the behavioral psychologist asked Archer many questions and to fill in the blanks on various statements, I was struck by his answer when she asked him, Can you make a sentence out of the words wish and again?   He responded, I wish I could use my legs so I could walk again.   I believe he will. I know you do too.   We are so grateful to you, your faith. Your breath. Your love. Thank you from the bottom of our hearts. Thank you for being generous with us. Thank you for being extraordinary to us. Thank you for storming Heaven for Archer, for us.   Thank you for even thinking about us. For sending Archer cards and well wishes and gifts and contributions for so many things he now needs. It’s very extraordinary. You are extraordinary.   We can’t be doing this journey without you.   There is so much to be grateful for, regardless of what barriers we face. We all face barriers. I know you have barriers as well.   Just to round out gratitude, I know you too have barriers. Some are with you today. I know that. Let’s make space for the difficulties and what we hope will pass, that we want to fight, that we want to change, that we wish would disappear. If you have one of those things kicking around in your life right now, bring it to mind now. Just for a moment. Whatever it is. Just bring it to mind and honor it. It exists. Yes, it’s hard or ugly or exhausting or sad or disappointing or shameful. Whatever it is, it is. Now, take stock of other things you have that are so beautiful, so wonderful, so life giving. Good food today, friends, family, a day off, gorgeous weather, your ability to walk, to move, your ability to breathe and to bring calm to your turmoil. Your ability to choose to believe. Your relationship with God, or maybe a beginning one. Your smile. Other’s smile. Someone who loves you. A lot. A whole lot.   There is so very very much to be grateful for.   I have to tell myself that today especially too. I do not doubt it but I can lose sight of it sometimes like in the rules and constrictions we face at KKI. We will not be a whole family together with Archer today as KKI has restricted that. But no matter, that too will pass. What will remain is Gratitude.   We are so grateful that Archer is alive.   To life. L’Chiam, that Jewish expression that two of my best friends and I would say as first years at UVA as we sat on the floor in the middle of our dorm hall on Friday late afternoons beginning our weekend clinking our beers in the air with a clink and a nod and a smile to life, a six pack of Heinekin in the middle of our three some, a canister of Pringles potato chips and a bag of peanut M&M’s. It was such a simple moment. To life.   To simple moments today.   And gratitude. It can crowd out the negative and allow us to begin again.   Amen. Sending love


November 17, 2015   Archer Senft Family & Friends Update Wednesday 11-17-15 DAY 106   Begin again   arch transport     We were off on our way out of room 429 on the 4th floor of the Shepherd Center at 5:55am. I had a cannoli (per archer’s request ) in my pocket. That, and our orchids placed carefully in a bag I kept in my lap that ward off any dark energy lurking in corners of Archer’s room (they do emit good oxygen ️) To begin again.   They arrived at 5:30am. We had been told 6am. Last time, they were on time to the minute. When they knocked on the door and I was just putting in my contact lens after we got Archer taken care of and ready to go, I laughed and said. Hey, what are you doing here so early? It’s not nice! Like a prom date arriving a half hour early! We all laughed. But it was no nonsense after that.   I watched the team of four swiftly and carefully move Archer from his bed onto their stretcher by lifting the sides of his linens to form a sheet harness and then swiftly strapping Archer in. I was aware this time of every click of each seatbelt on his stretcher, and as we whisked out, every change in temperature from his cold 62 degree room, into the warm hallway of the unit, into the dryer air of the elevator, to neutral air in the hallways to the damp and balmy air of the early morning Georgia fall day where his ambulance van awaited. Temperatures matter now for Archer. A lot. So we take notice of new things now.   They briskly wheeled him down the Shepherd hallways as we made our exit –the same hallways I had marveled at as we made our entrance holding as we did so much hope two and a half months ago, to the day–and then up and into the ambulance van. I said to Archer a few times, You’re doing great, bud. This is familiar. There is nothing to fear.   He was very courageous. This trip he had no drugs to knock him out in any way shape or form. He had a new antibiotic bacteria given from what I could tell preventative my since he had a high white count yesterday. It has been making him nauseous since noon yesterday when they started it.   As they lifted him up and into the ground ambulance, the craziest thought flashed through my mind as simultaneously my eyes welled up. I was not expecting the emotional response. I realized I was flooded with many emotions.   What flashed was a thought about new beginnings and Archer’s donor. His bone donor. Thank you, anonymous donor. Whoever you were on Earth and are now, I am so very grateful to you for giving Archer your hip bone to replace his shattered C5 neck bone. Thank you. That is the ultimate gift of unity, to give your body.   Some of you might realize that.   That Archer had is a donor is a very important part of Archer’s medical history. His impact was so great that his neck bone shattered into pieces. He told his rescuers he heard a loud cracking when it happened. Can you imagine. He knew upon impact also that he was paralyzed. I think I told you that part already. That part still takes my breath away though. His surgeon tried to get the fragments out of his spinal cord as best he could and believes he did. I’ve always wondered if there wasn’t some part that no one could get that shattered higher up causing the C3 level as well as C4 level of injury.   The donated bone is now fused to Archer’s C4 and C6 neck bones for stability. They are healed now as if it had been a regular neck fracture. But it’s a burst that caused him to need a donor. Gosh, I am so grateful for donors.   Since I was 16 and got my license, I always checked the donor box. Some young person did the same.   I was still standing outside to see Archer inside the narrow transport van surrounded by a team of 3 medical staff squeezed into the tight space when he began to need oxygen and a suction. That mucous is omni present.   Sure enough. He had more clogged in his lungs just since the 5am suction.   Two lung suctions in flight. He did great. Mo, one of this medical techs said, Archer, you have a really good gag reflex! I thought to myself, He gets that from his mother. Never imagined it could ever be a good thing.   Here we are in flight.   flight 2     Surrounded by angels.   flight 1     Arrived at exactly 8:40am. Amazing. Thank you, pilots Eric and John.   It’s good to be home.   flight 3     We are now traveling with the loud siren through town from middle river to KKI.   We just arrived at Kennedy Krieger. It’s 9:27am. It’s 52 degrees outside.   Thank you dear Lord, mother Mary, Fr Bruno and all of you prayer warriors. I know we were surrounded by angels both earthly and heavenly.   We are about to have a new beginning. Please pray for us today.   Amen   Sending love.


November 16, 2015   Archer Senft Family & Friends update Monday 11-16-15 DAY 105   We’re shipping out in a few hours. Please say a prayer for our safe transport. I feel the Angels’ wings surrounding us now as we pack our mere only 1 bag each that we are allowed to take on. It’s sad to go but the necessary thing to do to get Archer the attention he needs to breathe on his own. We’ll be picked up at 6am by Medflight crew and on an air ambulance jet 6:40am-8:40am to Baltimore! Then ambulanced by ground to Kennedy Krieger and Johns Hopkins. We love Archer’s Army and all our prayer warriors so much. We say goodbye to our Atlanta Arch Angels. With gratitude archer strong Sending love


November 15, 2015 Archer Update Saturday, November 15, 2015 DAY 103 Family & Friends Update   It’s been a full 10 days and much to share. This may take awhile. Prayer warriors have stamina, but are not expected to read all at once. xo   He’s on the Move!   Yep. The fire is manifesting within and Archer Senft is cooperating with something big. He is surprising everyone with a move in his PSV (pressure for his breathing) from 20 where it was stabilized for two months, to a dramatic 15 five days ago, to 13 two days ago (goal was 10 to begin an attempt at ventilator weaning) to…. On his own, without his therapists, without his caregivers, without Billy’s or my presence…. being off the ventilator for a full 60 minutes yesterday and today. And his oxygen saturation rate remained at a steady 99%. It’s unbelievable. Truly incredible It is cause for true celebration.   While he reported it is hard as each breath is very labored, he said, Yes, to the possibility posed by his pulmonoligist and he did it.   Archer is on the move to that much closer to his number one goal: to breathe on his own.   We are so proud of him. His lungs can’t yet allow the necessary 1000 and he can’t yet sustain the necessary PSV of 10, but he still wanted, as he said, To go for it and see. Those of you who know Archer will not be surprised. He had to contemplate that for awhile I am sure. In his head, turn it around and around until he knew. In his quiet, steady, solid way, he shot for the stars today, by himself. But never alone. I know he was surrounded by angels. There seems a certain cooperation with something much larger. I know the guardian angels and all the saints, and Fr. Bruno were there rejoicing, and protecting.   So, we shall see what this means, what unfolds, what this brings in the next few days, few weeks, few months as we figure out our next steps. There is a certain quality of pause and take it all in.   Let’s all do that. Let’s begin again today, this day with a pause. It is so good for us. P a u s e. The sweet word. And as you do, ah yes, there it is: your even sweeter breath. What is the quality of your breath right now? Is it even? Is it steady? Is it big? Is it shallow? Is it uneven? The beauty of your breath is that it is always there for you. Boy, do we take it for granted. Archer’s breath is there for him too. Helped by machines. Labored at times. But still present. And getting stronger. Life giving.   Are you aware of any of the thoughts or feelings that arise as you notice your breath? It’s interesting to do this practice daily. It’s never the exact same. Focus on your breath for a moment. Notice the thoughts and feelings that arise when you do. Hello, thought. Hello sensation in my body. Honor them, yes, but let them pass. That’s right. Just let them pass. They will inform you later. For now, be curious about and attuned to your breath. Notice your exhale. When you exhale, what does it sound like? Wind? A sigh? Soft white noise? What is the quality of your outbreath? I think that is what Archer was really noticing when we studied the video of his moments off the vent. While for him it is tight and very pressured, there is a relief in the outbreath. The relaxation of the diaphragm. And thus the relaxation of the chest. And then a relaxation of the shoulders. Maybe you can focus on allowing your arms and shoulders to soften. They may have been tight too. Oh, yes, Archer’s shoulders are so tight, and so the outbreath, his own, is so so good. It’s potential for relaxing us is doubled when we focus our attention on the inbreath and the outbreath, and notice the quality of each, and as we do, begin to allow them to breath us and to care for us. The miracle of the breath. Joy! It brings a smile doesn’t it? It does to me, a big inside grin. Thank you, prayer warriors for all your breathing and focus. Archer felt it for sure on his first day of trying to breathe on his own off the ventilator. Please continue doing this so his road to weaning off the ventilator will be soon. Shepherd says it will likely be months, I think less. Whatever it is, we feel the joy of a new beginning. Let us give a prayer of thanksgiving. Let us also give a quiet little prayer to each and every person who has difficulty breathing that today they may find a moment of relief. They may have a new beginning too.   To begin again is also so incredibly welcomed in the simplest ways. Archer and I had a number of rough nights, it seemed about every other night, the last week or so. Getting better though as they are not every night! But you know the kind of night I am talking about where Archer clicks for me and I feel like I’m electrocuted sometimes because I am in a delirium of sleep. But the new twist in the early part of this week that was completely unlike the past wake ups involved his ventilator itself.   Arch has two air tubes which are each about the size of quarter in diameter and about 6 or 7 feet in length, that fit onto a piece of plastic that forms a V which is attached to his trach opening in his neck, which is secured in place by a collar that is velcroed around his neck. Well, the tube into the V and thus those two tubes just popped off in the middle of the night. Yes! It’s true. The darned thing just popped off. Leaving Archer with no oxygen from the vent. But I had no idea at first as I heard him click and rushed to him in the dark, acting quickly as the alarms on the ventilator monitor and machines began to go off. I was looking in the dark for the oxygen button on the monitor to push it to give Archer what I thought he needed. Archer had this crazy panicky look on his face as his eyes were bigger than saucers as he mouthed something over and over but I couldn’t make it out in the dark. I raced for my phone to get a flashlight to be able to read his lips, as I frantically scanned him, and then….I realized: there were no tubes through which the hit of oxygen could even flow. The entire attachment was off of Archer and lying on the side of his bed. I mean, do you know the expression, If it had been a snake, it would have bit ya? Well, that’s what it was like. I couldn’t have imagined, the entire tubing that gives him all the air he needs to breathe was not attached. How in the world did that happen?   By this time, a team of medical staff had rushed into the room as well. We reattached it and that was that. Archer looked at me like, C’mon, Ma. He was right. I overlooked the most obvious because it was not familiar to me in the loudness and dark of the night. And the crazy part is that when it popped off, it was loud. The air in the vent is highly pressurized and it wooshed from the hose and teeny tiny pellets of water from the forced air flew out like light spittle. I realized that when I spied it and picked it up, loud, wooshing and spittling. I just was so not expecting it. These nights are always unfolding, always something new. I suppose it was a good thing to experience, similar to the barely bed sore that took over three weeks in 15 minute weight shifts to make go away. Good preventative things to experience now so when and if we are at home and this happens…. But Archer’s main functional goal was to breathe off the ventilator, before he came home. That little additional four words I know are very important to him. I don’t think we are going to be on the ventilator when we come home if Archer stays on the move like this! Here’s why else.   It happened again the next night, which was just the night before I came back to Baltimore, about 2am. I was leaving at 4:30am to shower and catch a flight home for the November 11 Mt Washington Tavern fundraiser. But this time, the ventilator popping off was part of my scanning for what to look for rather than my intense focus on Archer’s face, the oxygen button, the lung suction equipment etc. But here’s what is even more crazy. Absent someone not securely placing the V of the tube back onto the trach opening, which is pretty tightly fitted on, it takes a pretty huge force of air to push the trach so hard that it pops off the ventilator tube. Just so that you know, there is a lock on it per se, a plastic catch, like two little teeth on either side that keeps it secure. Which is why it was so very unexpected when it happened the first time. But now a second time, it felt to me as if something within Archer was forcing it off. Like his lungs are ready. As if they are ripping off their bondage. No longer attached. Or as if they have outgrown what was needed when they were young and helpless and now they are stronger and growing up. And it’s time. I honestly felt this deeply as I marveled at how strange it was that it had happened. And as I did, my nighttime delirium of fumbling in the dark to see what was wrong was gone. In some ways, every thing was right.   I was so awake and alive. Sensing this, Archer asked me for one thing after another. There was a new aliveness, an animation of the night. He asked me to wipe his face, then get him a new warm towel, then wipe down the back of his neck, then remove his headband that was so wet I could honestly wring it out, then straighten out his left arm, then put it very close to his side, then place his right arm to rest across his abdomen, then remove the thin blanket from his body, then adjust his pillow to pull it down to his shoulders, then lift his bed a fraction, then push his hair off his forehead, then tuck his long drenched hair behind his ears, then check that the ventilator was secured well on the trach. One after the other, each with an end, a move towards my only warm place chair bed, my asking, You ok? Anything else? and yes, something else again and again. He was really cleaning out fully. It was intentional and also almost comical. On what seemed like completion and I said, You good? He said, Cheek therapy. Yep, that seemed appropriate. I went to ICU in my pajamas and brought in another warm towel, draped it over his head like he likes so that he looks like Moses in the desert, and I pressed it gently up onto the sides of his cheeks so that all that was showing were his eyes and his mouth. Like a little papoose. He was settled.   I went back to crawl in between the down comforter atop the fold out chair with the extra 3 blankets on top for weight and warmth.   Then, a little over 90 min later at 4am exactly, it happened again. Can you believe it? But this time…. The force was so great that the entire inner cannula, which is the 3 plus inch piece of hard plastic curved tubing, shaped like a banana, that actually is inserted into Archer’s neck and into his body and into his airways through the tracheostomy opening, blew off too. Now is that weird or what? Seriously odd since the inner cannula also has a little locking mechanism, one that involves two little clips on either side that are opened and closed again when it is cleaned and replaced with a new one twice a day. So, the likelihood of it’s not being locked is always a possibility I guess but is slim. There’s a lot of air coming through so it really needs to be locked. So, did Archer blow the lock? I think so. So much for locking systems now. I don’t think they could have held back what I think Archer’s body is doing. Archer’s body is telling us, Archer’s lungs are telling us. They are saying, We are rising. I really felt that. I wondered as I crawled back in for my 12 minutes left of warmth under the down in the cold room, What does this mean?   On reflection as I write now, I know now it was Archer’s body preparing for his first experience off the vent. I knew when I left for Baltimore that he would go to the next level. I wasn’t sure what that was or would look like, but I knew he was going to the next level. His heart was born ready. His body is now ready. His mind will follow.   And it did.   After so long dependent on a machine to breathe, I am imagining it will be a real act of courage to say, Yes. And to stay grounded in reality that he will not die or suffocate. And now that he has been off and experienced an hour, he will need to stay grounded every hour as they extend over time. Since Archer told me many weeks ago, he preferred not to talk about his drowning, yet, I believe it must be terrifying for him to go off the ventilator. I believe and I know that it took incredible courage for him to believe he was not drowning again when he went for his first hour off the ventilator and oxygen tank.   There is again another irony. What saved Archer’s life was his holding his breath. His body is deeply notched now to want to do that for life. But breathing on his own is asking of his brain and his most primitive instincts to do and think the opposite. I am not sure that is understood fully by our good caregivers at Shepherd. There are differences when someone drowns and the weaning process. Differences that require good mental health attention and a gentle medical course of action.   But he is ready to begin that weaning process now. Even though he hasn’t reached all the numerical indicators normally needed to begin the weaning process, his body is giving us clues and signals in other ways, and I think, in other big ways.   One thing is for sure. Archer certainly had not plateaued. We knew that.   Thank goodness for Archer and requested meetings, difficult as they have been. Billy and I know Shepherd was the right place for Archer. It would have been a great tragedy for his recovery had he left at that first discharge date. He needed this time and he needed it at Shepherd in a safe environment with rehab still ongoing but with a pulmonoligist who kept the steady eye on his potential. It must have been frustrating for the rehab team to not be able to see more impulses coming on line and for Archer to care more about breathing than muscle development when forced to choose when he cared then and still cares now about both, very very much. Sadly, Archer suffered in a number of ways along the last 5 or so weeks when some of the rehab team lost hope or did not believe in his progress there or just lost interest in his progress with a view that the inability to breathe and all that was necessary for him daily was something that just got in the way. It’s true. It did and does get in the way. It gets in the way of just about everything. It is why it was so vital and I totally understand Archer’s unwavering commitment to breathing on his own first. I think there are a number of learnings in there we will need to revisit another time. We are so grateful for those caretakers at Shepherd who have been cheerful and patient.   The secret sauce though is yet to come. What is the secret sauce? That seemingly rare but absolutely necessary pairing for an Olympic athlete of a teacher/coach who believes in the student and the student who performs for the teacher/coach in ways that no one could guess exactly but believed could happen. I really believe that that is a way Billy and I can view Archer. As if he has a talent like one of those potential Olympic athletes that has to be taken care of in extra ways. Because we all know, Archer will perform. He will achieve because he will work hard and be dedicated to excellence. Archer is already internally motivated. Imagine what he will do when that chemistry of teacher to student is made. Please help us be on the lookout for that match for him. Archer is preparing to be ready for that.   We are excited about KKI with the hope that his schooling, which gives him energy rather than depleting him of energy, will happen on a daily basis and be supported as part of his overall therapy and well-being. Maybe it is in that environment that that pairing will manifest, or a team of such teacher/coaches. We shall see how it unfolds. Please pray that we make good decisions about Archer’s education. I know there is a piece of reality that we should be grateful if he merely graduates with his class, and we honor that. But Archer so loves to learn and loves school that it just seems to Billy and me that that is an integral part of his therapy. We can call that EST, education and school therapy.   As for his health, I still think there is something else about Archer and his health profile that is yet to be discovered. Just a feeling I have. For all of you, all of you who continued to believe with us that Archer needed love and support and time, thank you. That love and support and time has been a true gift. His steadfast, unwavering number one goal to breathe on his own is manifesting.   Archer is on the move. It is very good day and days. Thank you, Lord. Thank you. With gratitude to all of your breathwork and your constant prayers. He feels them. He tells us that.   The two fundraisers for this week at the Mt Washington Tavern and the Archer Strong Waterfront Gala in Canton just blow us away. We have done nothing to help. You have done it all. You are all so good to us and so kind. . And the architectural and project management help we are getting on our home accommodation needs is wonderful.   It’s a bit daunting in the home accommodations arena since one rehabbed room/area of the house with the electrical and generator and insulation and separate HVAC and handicapped roll in shower and bathroom and Hoyer ceiling lift and ramp from the street, and cuts into the stone and stucco, and doors that need to be widened and etc is a big construction cost number. But all these amazing events will help, every contribution helps and we are just so very grateful. It’s extraordinary the generosity of people: cooking, laundry, car pooling, organizing, boxing, transporting, financial, research, management, and so on in the daily things. I had someone I value her wisdom write me to tell me in her prayers she sensed Archer has been worried about two things: that he would never be able to have a family and the financial burden this places on Billy and me. While it is true Billy and I have dedicated most of our resources to our children’s educations, I was really moved by that letter. I know to trust those feelings when I am moved in those ways.   And, I realized that Archer himself may not have been privy to the vital information we received the night of his surgery. So, I told him what his neck surgeon had assured us of that indeed he could have a family. That too was just last week when we had that conversation. He nodded and smiled. Dang, his eyes are almost black filled with his dilated pupils. But when I then asked him if he worries about being a financial burden, it was amazing. He said, not being able to have a family and burdening Dad and me is on his mind the most. He said he is very sad that I am having to sell my office building.   Isn’t that amazing. She was correct. What a terrible thing for Archer to have to be worried about when we need his energy directed at his health. I told him I felt it was worthy that he was concerned about that. I said it does make me sad but that we will be ok. Billy and I assured him he will never be a burden. We promised that to him. Not ever. Ok, it may require things we did not want to do, but it will bring joys that we never before imagined. That is the blessing. He will never be a burden.   Please pray that Archer will be released from the worry that he is a burden. We are so grateful for his life.   The thought of gratitude is so available to us. With the simple shift of attention, it’s there. And the attendant feeling of well-being that comes from that thought shift is so free.   It reminds me of a few things that happened after Archer and I had our conversation when I went to Mass. I was looking forward to getting to Mass in gratitude, even before the weird ventilator and inner cannula pop offs in the middle of the night, as they were Sunday and Tuesday nights. But when I finally scooted out of the hospital to go this past Sunday, I was late, actually really late. I had the critical self thought race through my head, Ah, a mere one hour and you can’t even get there on time, Louise! But there was a nun who had a great influence on me in high school. She always said about going to chapel or about being late, It doesn’t matter. Just sit in the back. God knows you are there. I loved when she said that back then and I have always felt that since then. And I know it’s true. God is glad when we show up.   But the pews of the church last Sunday…were packed to the gills when I got there. This church, our away from home church if you will, and its congregation whose priests, prayer group and volunteer administrators to the sick, and its kindnesses in including Archer in the prayer petition from the pulpit to the entire congregation weekly, week after week after week, are acts I will never forget and for which I will be forever grateful. So the pews were packed and so was the far back of the church with other latecomers. Catholic Masses are well known for folks coming in late and filling in the back. So I walked slowly up the side aisle canvassing for an open sliver of pew where I might slip in.   I was almost to the front when I spied a space behind a pillar. A young 30’s ish man glanced quickly at me as I nestled into the corner of the pew somewhat next to him trying to take up as little space as possible. I was so grateful to be there. I find I am always happy to be at Mass and to feel the energy of all those praying together. It’s such a small token of appreciation to God’s glory and majesty to go to church, a simple one hour each week at the least. That hour is so little to set aside for God compared to all that we receive. And it’s really good to be around others gathering for a variety of reasons but essentially all there in one body and spirit. I really feel the energy and communion with others. I think that is what communion is all about. The mystery and the breaking bread needs to happen with others.   So, there I was having pressed myself into the corner of the pew behind the two foot plus wide granite pillar. There was actually enough space for another person between the 30’sish man and me, well, maybe enough space if someone was not too big. Mass was well underway, at least a quarter of the way into it. So, what do you think happened?   Another man came up the aisle walking with the same quick and quiet deliberateness that was familiar to me as he too appeared to be looking for a space in this crowded gathering. As I saw him looking, it was easy for me to move over, but it would require a cheerful attitude by the man to my right. I had a flash of curiosity if folks would move over for this other man looking for a spot so far into the Mass. And I had another flash thought that he was dark skinned and the other parishioners were predominantly light skinned as far as I could see from where I sat. But what flashed more for me was that the man in the aisle looking for a seat was easily 6’ 5”.   I quietly put out my hand and ushered him in next to me. He came. There we were pretty pressed side by side behind the pillar. We briefly glanced at each other with simple smiles of acknowledgment. But, since he was on the end, I now had a bit of a view of the altar and of the priest. His view though was nothing but a slab of stone in front of him. The man to my right scooted over a bit. I gently tugged at the tall man’s sleeve letting him know it was ok to move in closer to the right so he might see as well as the celebrant of the Mass read the gospel and gave his homily. I felt like 2 little kids in the cheap seats at the circus careening to see the act in one of the rings under the big tent.   The reason I share this with you is the amazing thing that happened next, and it happens every time in my experience at big packed Catholic Masses, and I imagine at many events where people gather together in common bond. What happened is that before too long, the other 8 or 10 folks in the pew sitting to our right seemed to just… well, re-adjust. Before long, we were all comfortable and we could all see. There was enough room for everyone. Isn’t that just amazing how we take care of each other as if by instinct. There was enough for all. Even our bodies move to make room for all, just when we may have thought there was not enough. Or maybe someone wanted to protect their space, but they yield just a bit and soon there is enough for everyone.   I was really struck by that. I think scarcity and not enough or not being enough thinking can nag, niggle and sometimes cripple us. The possibility that there might not be enough. And sometimes that may be true I suppose. But I really wonder. Is that true? Is that ever true? It seems that when we are in touch with that impulse to share or to do something for another, or in the case of space in the pew, to make room for others, that that impulse is primitive, driven from a deep seated need to connect, and a more evolved need for unity, a love of our fellow human beings.   It seems to me that when we are creative, we can always find ways to be enough. I think we just have to pause and …get in touch with the impulse. Our bodies, our hearts when they are in tune and open always want this it seems to me. It’s primitive because it makes us feel safe and secure; it’s evolved because it makes us feel good and it makes others feel good. It’s good because it creates ease in the world. In the case of our little pew, it created immediate well being.   It can be tricky I know with millions of people but it’s something to give some thought to. Scarcity and that really there is always enough. I believe there is. Willingness. Thank you folks in the pew.   I thought of Archer as I saw that tall man. Archer will be that tall I imagine, well maybe not quite that tall, but he’s got some growing ahead of him and he’s 6’2” now I think. It occurred to me there is an irony of being that tall. You can see what others cannot, but you also might have to be on the sidelines if there seems to be not enough room as you are perceived as being a big person. And, in this case, a sideline could be obstructed so in all the bigness, you can actually get left out. Funny how our gifts can also be our deficits at times. How our greatest strengths can cause us suffering. Life is like that I think.   Of course, the reverse is true as well isn’t it: our adversity can become our strength. And so there it is. The reciprocity of the circle of life, again.   Let’s all breathe in balance. Are you aware of your gifts, your greatest talents? I hope so. You have many. We all do. What are yours? What do you do with them? Do you share them with others? Do they sometimes cause you to suffer? Maybe when they are in excess or when you are driven by them solely, do they sometimes cause others to suffer? How might you celebrate them and use them in ways that are in balance and bring well-being for both you and others? These are good things to ask ourselves.   I think Archer will be asking himself these questions.   When I was in Mass, I was reminded of what Pope Francis has set out. You may or may not know that this December will be the beginning of the Year of mercy. Yes, Papa Francesco has declared December 2015-2016 as the time to focus on human dignity. I was talking with Archer about this. The year is marked as a year to become more merciful, and to be more merciful to others.   What does that even mean, To become more merciful? And to be more merciful to others?   Well I think when we suffer or cause others to suffer, we can begin by being merciful with ourselves. We are merely human and we also are divinely human. Both. Suffering is part of the experience. There can be learnings in sufferings. There can even be a joy in suffering if we do it for a reason, or sustain ourselves through it knowing it is not forever. It isn’t permanent. Nothing is. It’s our awareness of our tendencies, our shortcomings as well as our gifts in excess that will allow us to discern a path that is not as full of suffering. I think the way to sustain the self awareness is through self-compassion. If God who is all good and all powerful can forgive me because he loves every molecule of me, and the same is true for you: he loves every fiber of your being, then how could we not forgive ourselves and want to live more in the image of that mercy. That is so powerful. With every disappointment or judgment we have of ourselves, we can have mercy, can forgive ourselves, and thus can begin again. God wants us to forgive ourselves, to love ourselves, to care for ourselves, our souls, for when we do, we have so much to offer others. And so with each self judgment or doubt or criticism, Clean slate. Like confession. And absolution.   Oh, my, that reminds me of when my friend the Msgr. from another Catholic church further away came to see me a couple weeks after Archer was admitted at Shepherd, oh so long ago at Labor Day. I had asked him if he’d come back sometime to hear my confession. I really love him and he is so beneficent. He did return some days later at an agreed upon time. As we strolled around the hospital, one of the first times I had been out of Archer’s ICU room, we spoke as friends and I shared my thoughts about Archer’s condition and hopes and disappointments. And as we strolled the halls of the different floors looking for a quiet place to sit, we found the upstairs seventh floor, a lovely space. We continued our talks as we sat facing each other. As we sat in this quiet space, I recall pouring out my heart and finding myself getting angry about the constant need for vigilance. I remember I started to get a little wound up. I realized I was exhausted with the constant vigilance. I told him how tired I was. And how weak I knew I could be in the middle of the night and the wariness of the medical profession that had crept in on me. I was mad about the situation for all those people who don’t have a family to be the eyes of vigilance. I then recall being upset that I was not better that I was worried I had overlooked something for Archer. And that I had gotten mad at Billy, and blamed him for something out of my own weakness. I was a mess, and I said loudly with tears streaming down my cheeks something like, this situation is F—g crazy. I had this flash of, Oh my, I just said the F word and it’s Monsignor. And then I had a flash of, Oh my, I just said that and it’s Ok because it IS Monsignor. He loves me and will not judge me. I then was wrapped back up in my own stuff. He listened patiently. I regained my composure. He listened patiently. I could feel his loving presence. He had his head bowed. I was grateful for my friend. I told him how I wanted to be a better person and how I was struggling with that. I then recall that I looked at my watch, and realizing we had been away for a good hour and I had spent the last part of it dribbling on rather than going to confession, I said, Oh Msgr., I am so sorry. We haven’t even had time yet for confession. He lifted his head and looking at me, he gently said, For your penance, say two Hail Mary’s. I began to laugh in that way that is light and thankful as I began to protest, But Msgr.. we didn’t even really have the confession (in the Catholic faith, there is a beginning litany of prayer and and ending litany of prayer).   He said, Yes we did. You just spoke from your heart. That is all God asks.   Of course. How silly of me to have even thought otherwise. It’s not the formality per se. It’s the intent. We were in a place of confession, quiet and thoughtful. He had to remind me of that. Isn’t that beautiful. I felt so light, so absolved, so blessed. So grateful.   Thank you, dear God.   Thank you for this dear man walking in your stead on this earth.   So where were we before that digression….oh yes, mercy. The mercy God extends to us. Confession. Yes. It is good to go to confession at least for me. We get absolution. It is amazing to feel the lightness and the fullness all at the same time, the well-being of absolution.   I remember when I first learned that Pope John Paul II, beloved around the world for his mercy and love especially of young people, went to confession daily, to his spiritual confessor. Daily. One of the holiest men on Earth and he goes to confession daily. We all need a spiritual confessor. They are different than just good friends. They walk in the shoes of God, of Jesus, and do not judge or let what they have learned get in the way of loving you in the moment or later or much later. It’s over. It’s confessed and absolved. To begin again.   Aren’t we so grateful to know God, and to feel his love and mercy. Just feel that for a moment. To begin again. You may have said or done something you wish you hadn’t in the last 24 hours, heck, in the last couple hours. We are human. But you know you are better than that; that was not the true essence of you. It never is when we do something unkind or mean or wrong. It’s really not our true essence. Allow your breath to soften your shoulders. That’s right. Now, it’s easier to forgive yourself and to discern the right course. If you need to apologize or make something right with someone, go do it. Let’s all do that today, as I post, it is almost Saturday November 14, and it will probably be Sunday November 15 by the time I get this to you. Let’s all reach out to someone we were not our best selves with and say or do something that makes it better for both you and them. It may be an apology like I wish I hadn’t… but it may not. You know what it needs to be. I know it may not be easy. Go for something that is easy if you need to. Or do something that is hard. And notice how you feel afterwards. You’ll feel lighter. Mercy for self, mercy for others. It benefits you, and it benefits others. And we all benefit as a society from that sacrifice because we are all connected. That love makes us all stronger together. Archer Strong. One thing about this journey with Archer is that we are able to take time to think of things that we may not have otherwise, or took for granted, or overlooked but were there all along for us. I just love that. Abundance.   Oh, I wanted to tell you something else that happened. As many of you know, we are not a TV watching family, for the most part. I was a scrooge since the day Paula was born to not have TV in our house which lasted about 20 years if you can believe that. In the last number of years we have had a TV pretty much just for sports so we can stream Manchester City soccer football games from the internet and always be able to watch our home teams in all sports. That said, I know there are wonderful things on TV and excellent educational shows too. The reasons were many for why I didn’t want TV in our house, and never in our bedrooms as I have felt that it steals so much time which is so precious, gives a daily diet of consumerism, sexism and violence, and sucks the life out of the daily art of conversation and getting along because there is little time to practice. So, since the staff at Shepherd will turn Archer’s TV on when his last therapy session ends and Archer is always eager for channel 59 the food network, he is seriously logging in, I’d say, 3 to 6 hours a day! of TV. That is unreal to me and it’s true. Now, I looked up the national average and he is still below that. Can you imagine. The national average is between 7-9 hours of TV watching a day for most children.   Now, here in our hospital room, he and I have had some great discussions about his favorites and how we both think the face of the fast food industry is changing and will change even more so influenced by the popularity of these food cooking shows. We bet that consumers’ choices will trend for eating at more farm to table restaurants, at places that offer a variety on non processed foods, and ….eating more at home where cooks young and old can participate, and where eating and conversation can happen more around the kitchen table. Wouldn’t that be wonderful. I think families are strengthened by the nightly ritual of breaking bread together. I know they are. We talk about that and about how these young kids on the food cooking shows, aged 10, 13 and 16 are absolutely magnificent. We both love those kids. But all that said, 3-6 hours a day of TV watching is a lot of time. Because Shepherd has not been too keen on Archer’s taking school classes, and also because Archer’s ability to speak has been so limited, Archer is logging in a lot of TV. I mean a lot. And not only on, but it’s crept into the background for the 4-5 hours a day that he and I or he and Billy, or he and any of the Atlanta Angels and visiting friends and family members spend with Archer feeding him! It’s now almost non stop eating we do every day from about 4pm to 9pm. That is awesome. But the TV in the background, I don’t like. I also think it’s setting Archer up with his new brain activity to associate watching a screen with eating. At some point, he will gain back his 35 pounds, and when he does, he will need to curb and preferably not have at all that impulse to eat when he sees a screen. After all, a screen is used in our lives for so many things, including communication via Skype and schooling.   I am very aware of the power I have to just turn the TV off. A mere hit of a button on a TV wand. I am also aware Archer has no power whatsoever. So, I would never do that. Archer is not powerless, however, since he could, when I am not there and am, say, in a conference room around the corner from his room working or am on the phone etc, ask a nurse to turn it on for him, and she would. So he has that power. But that’s no way to have a parent teen relationship when the teen does exactly what the parent fears as soon as the parent turns their back. Although I know there is an element of that in being a teenager, that is not a set up I want to contribute to unwittingly. Essentially a power stand off could result and that would be unhealthy for both of us, both short term and long. So, I wanted to dialogue with him about it.   So.. I said to Archer, since I last wrote to you something like, You know, Arch. I know you love the food network and all the cooking shows, but for all the years in our house, we have not had a TV. I know you have a show you love on your laptop on Tuesday nights during the school year, but you sure are logging in a lot of hours watching food preparation which has me a bit concerned. Archer said, Ma, it’s fine. I said, It’s not really fine for me. I’m ok with some of it and I like your choices of the Food Network and Stephen Colbert (after all Stephen and his wife sent Archer a poster of Pope Francis in Philadelphia knowing we have that in common. That poster hangs in front of his bed too, next to the photos of Cape May.) But it’s just so much time, Arch. I mean, are you aware how many hours a day you are watching TV? Archer said, Ma, it’s fine, really. I said, But Arch, I’m not sure it is. You have a brilliant mind and a lot to give the world. You’ve had years without TV and you guys (our children) are all the better for it I think. Don’t you agree? Archer, sort of nodding yes. I continued, You are good communicators, you’ve had all these extra hours a day to just be with each other, to enjoy each other hanging out and talking, and to play, make up rules of games, be creative, play music, read and hang out. Right? Archer nodded. I continued, I just want you to think about it, that’s all. I think Dad would agree with me too. You can ask him. I was noting the number of hours you log into the food network, and it would be nice to turn at least some of them into school hours, don’t you think? If we can, upon our return to Baltimore, at KKI put some more school instruction in place, don’t you think it would be a good replacement? Archer nodded in agreement at that. I was relieved. He so loves school and learning so I was not actually surprised, but … he also loves to cook, and I also want to honor the education around cooking the cooking channel is providing. Help me, God, stay grounded and shaping Archer’s decisions in the best way I can for him to make the final decisions later in life re how to use his time. Because, I can imagine a life of mega TV watching by those who are quads or confined otherwise.   But this conversation lead to another last week about time. I said, Arch, you know I’ve been thinking about another aspect of time for you. Want to talk about this? He nodded ok. I continued, You would be at sports practice at least three hours a day at this time of the school year, and every day essentially during the school year. That’s another three hours you now have. At least until the Creative Miracle. You might consider now how you want to use that time. It’s a lot of time you could spend thinking about important things. Ever thought about that?   He nodded. He smiled and then said, Hey Ma, can you put the food channel back on? We both laughed. It was a funny moment.   Those conversations were last week. Three days ago before I flew back to Baltimore for the fundraisers a more remarkable conversation occurred.   Archer said very deliberatively after dinner (the TV was not on by mutual agreement) and before dinner #2, and #3 since he is woofing things down now and consuming well over 4000 calories a day… Hey, Ma. What Arch? I noticed he was pretty animated. It was Sunday night, the same night of the first vent tube pop off, but before the vent pop event. He said, Ma, I’ve been thinking….I could figure out a cure in science for SCI [spinal cord injury] for me and for all the other people like me….Like in..10 years. I said, Hmm. Yes, Archer, you just might. He said, That would be a Creative Miracle don’t you think, Ma? I said thoughtfully, Hmm. Yes, Arch, I think that would be a Creative Miracle. (long pause) Archer, very bright with the pupils of his eyes still totally dilated then said, I mean, Ma, a Creative Miracle in 10 years. I’ll be just…about 27. I’ll still be young. And then I would have the rest of my life ahead.   The rest of his life.   That really is something isn’t it? So he is thinking. And he is engaged with his future and the possibilities.   I do have this feeling that Archer will walk someday.   Hope is so life sustaining.   I should stop, it’s too long, you have great stamina, but I did want to update you as so very much passes and happens in a week or in our case 10 days. 10 Days!   So, Archer asked his doctor, how long do these sweats continue?   We continue to battle at night in particular, but throughout the day as well, the sweats. Heavy sweats. On his face and neck. No where else at least for now. Actually, as I write the word sweats, I can hear my Mom now during those little girl years when I’d come into our house in Illinois after running and whirling around outside and proclaim, I’m so sweaty! My Mom would say, Louise! Animals sweat; men perspire; and ladies…glisten. I always liked that I both glistened and perspired, since I was a tomboy. So, OK, Archer perspires profusely. When he asked the doctor when it will end, she said, Maybe never.   Archer looked at me with a most pained expression. I then asked, Do all quads sweat like this? The doctor continued, Some quads do, some not at all, some for a short time. Then she paused and said to Arch, But I’ve not known anyone to sweat like you do, Archer.   Honestly, my take on it all, that is similar to my view about the copious amount of mucous production, is that there is something holy going on in Archer’s body regarding healing, and the overabundance of perspiration, like the overabundance of mucous, is related to his healing. Makes sense if the tissues and fibers internally are working on connecting. We just don’t know it yet or can’t see it yet.   But the now reality is that Arch really pumps out the perspiration, all over his face and neck while the rest of his body is dry. To give you an idea of what it is like for him, as soon as I might wash Archer’s hair in the shower, which he dreads because they are so hard from the perspective of temperature swings from chills to sweats, his long locks never dry because they are drenched almost simultaneously with perspiration, after he goes through feeling chilled.   And this body temperature thing is really wild because all day long, he prefers the temperature in his room to be about 66-68 degrees (warmer than ICU at least!) and asks often what the room thermostat reads since his body, that doesn’t perspire, still nonetheless responds to the external temperature. He can feel on fire to the touch of his skin and not be sweating at all on his body trunk, but his face and neck are beaded up with droplets rolling down into his ears which he does not like.   Then there are those nights he asks for a warm blanket, and often many warm towels because the thermometer put into his mouth reads that his core body temp is 96, and his legs literally feel cold to the touch. Then there are the nights where both things happen. On these occasions, Archer feels chilled and looks like an Arab with his 2 white towels just plucked from the ICU warmer with one draped over his shoulders and another around his head and face while the rest of his thin long body lays there exposed with nothing covering it to the cold air, not able to cool off fast enough. This continues despite the double dose of propanthelene.   We want to cooperate with what the body needs for healing. And also manage his misery wisely. Please pray that Archer’s perspiring may at least even up and then in time ease up so he can rest. It is hard to rest because it is hard to get comfortable and because he needs a number of hours upright in his power chair where he can do regular weight shifts every 30 minutes to prevent the dreaded bed sores.   So, twe also inquired of the doctor about the drug being used to control his sweats. She said he was at the highest dose. We have found some of the drugs help, some others seem to have little impact on him. Some he doesn’t need at all even though they may have been standard protocol. We are learning and always questioning drugs as you know. And their quantities.   I am starkly reminded of the importance of questioning all drugs and their quantities because a few nights ago at Shepherd, I ran into one of the dads who was at the microwave in the little kitchenette area the families use. I was there to heat up a glazed donut for Archer after he had eaten dinner, plus a full Subway sandwich Billy bought for him, plus two Trail Mixes, plus an Ensure, plus another brisket sub from Jimmy’s in Atlanta brought by another Atlanta angel, and now we were topping off the 4-5 hour time for chowing down with a donut. As I waited for this other parent to finish using the microwave, I asked him how his daughter was.   I had seen her crying and very distressed in the hallway in her power chair earlier that day. There were a number of medical staff around her within a few feet of her power chair, sort of watching on. I said to him then in the kitchen, It’s good to see you. How’s it going? He said to me with a giddiness in his voice and quick body movements, Discharge date next week! I said, I see. You sound very happy. He said, Oh yeah.   I knew his daughter had been off her ventilator for weeks but still had her trach. She had use of her arms, chest and voice and had always seemed very pleasant when I’d see her. In fact, I had thought to myself on more than one occasion, Even though she is older, it’s still remarkable how smooth and outgoing she is. I thought she’d be a good role model for Archer. I said to her dad, I meant to ask you earlier how your daughter is because I saw her crying in the hallway. He lowered his head. His entire demeanor changed. He said, Valium. She was getting hooked. They started to take it away from her. It was bad… Still bad. I said, Hmm. I’m sorry to hear that. Sounds rough for everyone. He continued, Oh, yeah. I thought she might be getting hooked, I mean you know but nothin’ you can do. I echoed, Nothing you can do when you thought she might be getting hooked? He said, Yeah, you know how it is. You can’t tell them [hospital] not to do something. They just do it. And she’s hooked pretty bad. I said, It sounds like you had an instinct about it but didn’t think you could tell them not to. He said, Yeah. That’s right. I mean I didn’t really think about it. But now that I do, she’s been on a lot of stuff for months and that Valium and other stuff, it’s gotta get ya. Yeah, she’s crying All the time. I said, I’m sad to hear that. Sounds like it’s rough for both of you. He said, Oh yeah. I told her she better stop because if she don’t, I’m leaving, and she can be stuck with her mother. I said, Oh, would you really do that? He said, Oh yeah. It’s rough. And I know she don’t like her mother so… I said, Hmm, that’s tricky. Sounds like you want to motivate her, but now she’s drug dependent and not responding to what used to motivate her to change some sort of behavior you don’t like. He said, Exactly. She don’t like her mother, and her mother don’t like her… But I’ll leave. A lot of nonsense. I said, So you’re thinking about leaving…Do you think it helps her now to tell her you’ll leave her? He said, Don’t matter. I will if she keeps this up. I said, I don’t blame you. It’s rough and I can tell you really want her off the Valium… I wonder what it might be like for her and for you if she knew you would not leave her, and you told her you wouldn’t leave her… even though you know you could, but you don’t. He said, Oh no. She keeps this up, I’m leaving. I finished nuking Archer’s donut and said, Well, I hope you all work it out to a good outcome.   And then a remarkable thing happened as he was about to leave the kitchen.   He paused and said, Well, maybe I wouldn’t leave her. No one else for her, really.   I said, Hmmm. Maybe you wouldn’t leave her. All of this is so tough, isn’t it? I wondered if I should say it or not and I chose just to go for it. I gently offered, Maybe you can have a conversation with her and tell her that you know how tough it is for her. And maybe you might also tell her it’s tough for you too. And then maybe you could tell her what you’re worried about and why. And maybe then tell her that even though you are scared for her and frustrated with her, you won’t leave her.   He smiled at that, and as he did, his gold tooth glimmered and his large gold cross on chest that hung from a large necklace around his neck seemed prominent. I was fond of both of them. I know Archer was fond of her.   He left the kitchen but hopefully not her, at least now. My hope for this young woman would be that her Dad might not capitalize on a suffering to create another suffering. And it’s always a hope that the relationship between a child and mother that’s bad might be better. Maybe not great. Maybe not much of a good relationship. But at least some clarity about where each stands, a truce, if you will, without sharp edges, so that others, and in this case her dad is thus not able to use as a further wedge with his daughter and really against both of them. It doesn’t have to be khumbaya. Just the clarity about the boundaries, without rough jagged edges. I’ve seen in two decades of my mediation practice how rough it is on folks as adults who had bad relationships with their parents when they were kids or young adults that is never worked with but just left by virtue of moving on in life, going to college, moving out, whatever, always seems to rear its head until it is addressed someway. And the fracture in that basic parental relationship brings so much suffering that trails for many years into adulthood and middle age. It affects their own marriages and parenting. And on goes the cycle. It could potentially be very different with assisted dialogue. I’ve witnessed it.   That, as well as the notion of drug dependency throughout hospitals and rehabs really reverberated for me and lingers for me even as I write. And that’s when I harkened back to a vividly recalled meeting we all had in Atlantic City.   All 7 of us were there in the waiting room, that includes Petey’s girlfriend Megan but not Archer since he was in his hospital room. It was towards the end of our stay in ICU.   It was another one of those family conferences I had been asking for for a couple weeks regarding what we can expect and what we can understand about Archer’s medical situation, and do as a family of caregivers. Our lead doctor finally capitulated and said we could have it upon our leaving. That seemed appropos although our experience was teaching us that it definitely was not the norm for doctors to meet with assembled families. I was deeply appreciative. I don’t know why hospitals do not have such conferences with families routinely. While it takes time, it is the most efficient way to talk with a family so we could all hear the same thing together and it’s the most efficient and effective because we all benefit from the questions asked by a few and the views expressed by each other. So, I felt his willingness to meet to be a true act of kindness.   I had all the kids on notice to make sure we were all assembled. It was the third gathering of all of us we had had. We were shipping out of this ICU with a lot of unknowns ahead of us, and unknowns we were also leaving behind.   As we waited for the doctor at the appointed hour, we began our family meeting as Billy and I updated the children on what we knew. There was a seriousness in the room. Some tears. There was also a certain weirdness about the meeting because we were about to break up. We had just spent the entire month of August as a family in an ICU. There was a craziness about it, as well as a certain intimacy since it had fallen in the summertime when we all had a lot more flexibility with time. As we neared the end of August, Paula was toggling work, Pete and Dewey were getting ready to go back to their respective colleges, sights were turned to get Dutch’s school supplies and uniforms cleaned and new tennis shoes and to figure out how Billy and he would live the two of them while I essentially moved to Atlanta with Archer for a while, another unknown. But based on our Shepherd intake consult, I’d be away until around Thanksgiving. I could feel a certain anxiety about our impending disconnectedness. I certainly felt it. One of the kids had asked how they could best help Archer and help Dad and me. It was a moment I will not forget, the first of two of this particular family conference.   I paused and said, The very best way to support Archer and to help Dad and me is to do well in your own lives. Do well. Live your lives fully. Stay connected to Archer and to each other, and also live full lives, your lives. Do well in school, work on good relationships, work hard, choose to be surrounded by good friends, choose wisely, be involved in the world. Stay close to God. Support each other. That is the best way you can help Archer. And in the big picture, make the best decisions you can. We don’t want any alcohol abuse, drug use, violent or cruel or insufferable relationships, sadness and depression that is not attended to. …We are going to stumble. We are all going to make mistakes. Let’s try to minimize the big ones. That’s the best way you can help Archer and Dad and me.   The doctor entered the room. We welcomed him into our circle, and he began with a few things about Archer’s status. Just having him come, I recall thinking that that doctor really cared about us after 30 days in the ICU where I know I had been a pain in his side on many occasions. What was normal for Billy and me and our family was not for them, and what was normal for them, was not for us.   But I will never ever forget what the chief doctor said and it went something like this. I know he had thought about us. It was very evident. He said, You don’t know what lies ahead for Archer. None of us does. I wish you all well. He was conversational. He continued, You know your lives are different now. They are changed. You have to realize that. I don’t usually get to know families like I’ve done with you all. I’ve seen you. I’ve seen how close you are. Your lives are different now. These kinds of things are catastrophic. Archer may be just like he is now forever. These kinds of things can break families up, even ones like yours. I hope that doesn’t happen to you.   It was a stunning moment. It’s true. We are all fragile. We really need each other so that in our weakness we can find unity again. Please pray for our family unity.   It is also true that we are all resilient. Dear Lord, please give us hope when we become discouraged.   So, I will leave you for now. I will probably write you tomorrow or before we ship out again, this time home to Baltimore on Tuesday, November 17.   My last note is for families. Let’s pray for the strength of our families. For our marriages in particular. In their fragile times. On Sunday, after I had gone to Communion and was returning to my pew, it was thinned out a bit as a person or two had not returned to the pew but had headed out to enjoy the rest of their day. Communion is the crescendo, after all. It was momentarily chaotic in our pew as everyone was re-organizing as they refound their seats. I noticed that the space was empty where a younger woman had been sitting next to the 30’sish man. I had assumed they were together.   Teasingly, I whispered to the young man, Did you lose you wife? He replied back, She went to the car. He gave a feeble smile. It was a moment that if I had thought harder I would have known something was not right, but there was no additional moment as he leaned back in to me, as if needing to be more honest, and said, I hope not. Those words had a graveness. I knew. He knew. I leaned back in and whispered to him, I am sure you have not lost her. In the silence of the prayers after Communion, he put his face in his hands and began to cry.   Dear lord, please bless this man and his young wife. And all the young men and women and the older men and women and the middle aged men and women who are desirous of good marriages but who are struggling. It’s so natural to struggle. And also so destructive if we don’t attend to it. Let’s all say a prayer for that. Dear mother Mary please surround us with your loving arms and care for us.   Dear Fr. Bruno Lanteri, help Archer experience the Creative Miracle. Dear God, thank you as I believe we are all living part of the Creative Miracle now through our unity and gratitude for what we have. Thank you, dear God, always for your love, power, and mercy.   Amen.   Sending love.


November 5, 2015    Archer Senft November 4, 2015 DAY Friends & Family Update   In the blink of an eye, a life can be changed. We know that well. We also believe it true, for healing.   It’s been a big couple of days. About the blebs in Archer’s right lungs… Tests on Monday and consults on Tuesday told us the blebs have not progressed. That is good. The thoracic surgeon also told us they will not resolve or go away. That is not good. Once there, they stay unless stapled out of the lung, but that is not an option because of the earlier stapling and pleurodesis surgery in Atlantic City. The thoracic team at Piedmont Hospital here would have done the same thing now. While they do not expect them to resolve, ever, we will hope they do not worsen. There are about 20 of them in various sizes in the upper and lower chambers of the lung. Not sure what it means for Archer. They say it probably will make it more difficult to wean off the vent. And, not a good idea to do the DPS pacemaker if the lung is a bum lung even though it could be done if enter through the abdomen. While we had decided not to do the DPS now and to instead give Archer’s body time to heal on it’s own, we liked having the option of the DPS down the road as a way to help Archer wean off the vent in the event his body was not able to on its own even after many more months. Now, that is not an option. I confess Billy and I were feeling low yesterday as we were struggling to understand it.   But then, a blink…   After two intense days, last night at 11pm Archer and I were praying in the dark together the prayer on the Fr. Bruno prayer card with the light of my cell phone. Isn’t it a beautiful prayer? I hope you might consider saying it with us or whenever you desire. We just love to say it together. Anyway, we both settled in and about an hour later, at midnight, Archer clicked for me. I arose and said, What is it, honey? I also must confess that I was hoping he was just checking to make sure I was there and didn’t need me to get up as the last three nights he has needed to be toweled off from sweat on his face that is so profuse every 20-40 minutes all night long that we are both a little bit wasted. He clicked again. I got up and went to his bedside. In the dark by the electric glow of the ventilator monitor, very quietly and very seriously, Archer began to move his right arm bicep and to lift his right arm, enough that his wrist and hand were floppy. It was incredible. The first of the right arm movement. The right arm moved! And, he was able to do it again, as I cried, Do it Again! He did. We were both like two kids with a secret as we just grinned at each other. I felt ecstatic and peaceful and, surprised and not surprised all at the same time. Thank you, Lord, dear God. You are so good.   I knew the Blessed Mother Mary and the angels were surrounding Archer. Bruno of course is there in front. We thanked Fr. Bruno. I really really really feel something is happening.   To be grateful, oh so grateful just feels good. Doesn’t it feel good when you are grateful? Gratitude is a necessity in life. Gratitude for the tiny small things, like our breaths, and then in that moment, something that was not small but so very big, like a right arm movement. We just want to marvel in it and celebrate.   Can we do that together right now? Oh, Thank you. And thank you, good God who loves us all so much. Lift your right hand, go slowly. It’s actually kind of heavy isn’t it when you go slowly? Do it again really really slowly. Feel the sensation of the bicep muscle at work. Then feel the tricep muscle. When you go really slowly, you can distinguish between the two. Amazing eh? Arch is doing his work with his shoulder and bicep. For all of us as we carry so much on our shoulders both physically and emotionally, really honor that shoulder of yours. It does a lot of work for you and is capable of holding up great things, like you! If you are an athlete or like to work out, really take care of that shoulder. Or if you travel and carry your bags over a shoulder, be kind to your shoulder and take a nice hot bath. I had to learn that myself when a healer who is very near and dear to me practically scolded me a few years ago about how important it is to care for the body. She is so right. A new friend send us a beautiful youtube of her child’s school choir singing a beautiful song, Shoulders. I recalled hearing Dutch sing it at a school mass but not knowing it was called Shoulders, all about allowing God to carry us. Isn’t that the truth. Especially when we are weary.   Now, with your right arm raised a bit and holding it about 3 or 4 inches up in the air or up off the bed or your lap, gently and tenderly use your bicep to shake your wrist. Let it flop around as it dangles there. It is such a marvel. See how you did that. It’s easy to do when we are fully functioning, althouth you probably use your wrist extender and not your bicep to do that typically. It is a huge big deal for Archer to do it. That is what he did last night. As he did, his dilated eyes glowed in the dark. His eyes were like saucers. It was really quite a moment. I gave him a hug and returned to my fold out chair bed and we both went back to sleep.   But wait! There’s more!   As the early morning came, it began the rest of a HUGE day for Archer.   Here is what happened. 1. I just have to say it again: RIGHT arm movement! Then, 2. Archer’s pulmonologist came in on early rounds bringing me the a list of each of the times Archer gave a vital capacity test, 650 to 200. He was lively and thought we might try to increase Archer’s PSV pressure support volume from 20 to 15. That had always been a goal, then 15 to 10 and off. He said he thought it might be time since the left lung xray was very clear and the secretions are lessening. We said OK and he reset the PSV setting to 15, keeping the PEEP at 5. Archer was not ready and did not tolerate it well. His respiratory rate dropped from 800’s to 400’s. He gasped that he could not breathe. A bit panicky. The Dr put the settings back to 20. I could feel that the Dr was disappointed. He began to walk out of the room, and I then asked if there are other numbers between 20 and 15. He said in his serious, deadpan, factual way, Yes: 16, 17, 18, and 19. I asked if it were possible to try to increase Archer to, say, 18? He said we could try. He set the PSV to 18 and …Archer did fine. Isn’t that awesome! It’s harder for him to breathe now because there is more pressure on the lung, but he is tolerating it. One step closer to weaning. Then,   3. In the morning Physical Therapy, since he was able to move his right bicep with enough strength to move his lower arm, we tried the MAS Mobile Arm Support contraption on his RIGHT arm and…. he wrote his name for the first time and Dear Mom as his first writing! I thought you might like to see a picture. Archer name1   You know your name is so important. Our name is a big part of our identity and our psyche and our health. The idea that God calls us each by name is because we are unique in all the world. It’s been written that there is no greater sound than the sound of one’s name. So simple. Isn’t that interesting, beautiful. With just a little effort, if we can remember to call someone by name. And you know, if you can’t remember, just ask. We love when someone asks because we know they care enough and we are about to get the big payoff: they will call us by name!   I remember when I learned that a way that people have been tortured in history is to strip them of their name, their identity. Just a number for instance. Well, Archer was claiming his identity today. Archer Senft. You can make it out if you look harder at it. I was very happy for him. What a fine day.   And here’s a picture of him doing it! wearing his sweats that say Georgia on them as they are tying to convert him (not way, Jose), his Maryland cap he loves, and his Tshirt from Stephen Colbert.   Archer writing   4. But the real piece de resistance came after PT as we headed back for lunch. I’ll go back to the morning round with the pulmonologist. Before he left our room in the early morning rounds, I asked if he could do another vital capacity test. He said it might be too soon. I asked, How come? Isn’t it better to see what Arch can do? He indicated that if it were the same (low 200), then….He didn’t finish. So, I finished his sentence for him, Then the patient might lose heart? He nodded. Hmm. Yes, I see, that is kind, I said, But, I think it would be good to know where we are. I think Archer would want that. We looked at Archer and asked. He shook his head affirmative. He said OK, he’d order it. So, back in the room after PT, the respiratory therapist/ educator came in. Archer wanted to have an albuterol treatment and to be suctioned out first. We did that. She coached Archer on what to do with his big breath and how to blow it out. Then….Archer blew a 750 vital capacity. What? Are you kidding us?! We all just squealed with delight. 750! The goal for weaning is 1000. The nurse went out in the hallway and said she was going to put in on the loud speaker. The other nurse said she was going to call the Dr himself with the good news. Everyone was elated! The pulmonologist had said a few weeks ago that he’d take 800 if it were consistent. The respiratory therapist/educator said to Archer, Let’s do it again! She coached Archer through it again, and this time he blew an 800! I kid you not. He was on a roll. She said, Let’s do it again! and he did. Another 800. Amazing. Three times! A small step for you or me, a huge step for Archer. Like Walter Cronkite said when Neil Armstrong first walked on the moon in 1969, I remember it so very very vividly in my Gram’s living room as we all gathered and stared at the black and white TV on the floor to watch Apollo 11 and hearing Cronkite state with a tear in his eye and so confidently, One small step for man, one giant leap for mankind. You know I just realized that when we watched that leg stretch out and touch the moon, I think it was July 20. July 20 is Archer’s birthday. How about that. We are going to see Archer’s leg stretch out one of these days. Amazing what stream of conscious thought can bring forth. It’s always the Holy Spirit! Yes, Archer had a one small step for rehab, one giant leap for recovery. Another step closer to weaning.   5. The nutritionist then came in as we were jamming on some Trail Mix and Ensure (a lot of calories) and was literally bouncy that the last three days Archer has been eating 2700-3000 calories each day which means…. No more feeding tube as of today! (Except for bulaces of water as needed). Isn’t that awesome. Awe some. Full of awe. God is so good. Thank you, Lord. Fr. Bruno you are with him. All this happening so quickly.   6. Because of all this progress, we were told our departure date has been extended a week. All good. Archer wants to stay. I honestly think things are happening. It’s better for KKI though to come on a Tuesday, so we will plan to go home via air ambulance the morning of November 17. Seventeen is a good number as it’s Archer’s jersey number and all the Senft boys’ athletic number. It’s a good number. November 17. SO, see you then!   7. And the other big thing of today: I join Billy as we both have officially been checked off and certified in a respiratory care so that we can now take Archer outside and off campus! We might just go AWOL! I can’t wait for Billy to fly in tomorrow to celebrate, and I think we will walk with Archer outside and to the secret garden and to the road and maybe to Chick Filet! Which is just a block away. Maybe not, who knows. We still have to follow him with a table on wheels that has the bag to bag his breath and the machine to plug in to deep suction him if he needs it, so it might not be quite practical. But we are psyched! I feel the love of Mother Mary so much and I feel it in my own love of Arch. He is trying so hard and today just seemed magical with one thing after another of goodness. He has not plateaued. But we all knew that. Isn’t it crazy how things happen. So, I wanted to tell you about my thinking and my belief that Fr. Bruno is very actively involved. What we need is a platform of stabilization for Archer so he can harness the energy for the next evolution of his recovery. It was too soon to leave Shepherd. And the Universe provided the guidance. But there is something about this Bullous Lung condition that I think is leading us to look at other things, other data points. I can’t quite put my finger on it, but it just feels that way. Like there is something else we are to learn or know.   If you get any insights, let me know. You have shared insights that I am grateful for. You have also been very practical all of Archer’s Army.   The last two days have been marked by a flurry of activity re our home modification needs as well as we are looking for sources for ceramic tile, windows, shower/toilet fixtures, bluestone, paint. It is tricky all that needs to be done and decided. So, I toggle between here and home in emails and phone calls and that is before bath in the am and after the T’s and my family training at 3 or 4pm but before dinner and more MAS practice. And, believe it or not trying to fit in 2-3 hour at a time recording the book in a nearby studio the Order of malta helped me find to make an audio book. I promise you it’s always a three ring circus. It’s all good. But sometimes Archer can yawn in the middle of eating and I can feel the same way and I just laugh. This too shall pass. And, there is also so much joy in the moment, or many moments.   It feels very good to have the team of nurses and techs and T’s rooting for Arch. I suppose there are some people who respond well to someone who doesn’t believe in them simply to prove them wrong or something. I’m not sure. But that is not what Archer is like. That is not his constitution. And, he’s a true teenager. Sure, now wiser than he ever would have been because of what he is enduring for sure. But he’s still 17. Kids and young people need to be surrounded by love and support, love and limits of course, but love always. Think of all the times your adolescent did really well in a course, a class, on a team, in a recital, in a play, etc. it was usually because they loved their teacher/coach and the main reason they loved their teacher/coach is because their teacher/coach loved them! Isn’t it true? It’s such a simple proposition. It’s very reciprocal. And it’s true. Archer is no different. If you are in a position as a teacher/coach of children, especially young adult people, it is so powerful just to take a genuine interest in each student/player/kid. Not just one or your favorite, but all. Wow, imagine the teachers/coaches who do. They are some special people. Or if that is asking too much, just take an interest in the whole and… be on guard for one or two you do not like. That energy could spell failure for them as it might be they who need your positive caring interest in them the very most. They may not perform as well as the others for various reasons and factors, but they will likely surprise you. And their lives will be bettered for you. It’s always been one of the reasons why I have loved God so much even when I was a little girl. I was usually a girl whom teachers and coaches liked and later in life, professors and employers; I’ve never taken that for granted. But I realized somewhere late in life that it was driven by a belief that if I didn’t perform well, they might not like me so much. And so I always performed well, or tried or worked hard to be very good, very capable. But it was never that way with God. I would try hard for God, I recall vividly that is one reason for wanting to be good. But I also remember very young, like grade school days in Springfield, after Dad had died and we moved from New York to Illinois, that I knew God was always there by my side no matter how well I did, that he always loved me for being me, just the way I am performing or not. Capable or failing.   It was easy to have a relationship with God knowing that.   We are still battling sweats like you can’t imagine. The crazy part is that Archer asks me to go to ICU and get him a warm towel out of the warmer 20 times a day, no kidding. They are going to chase me out. When I get back to Archer, he always wants the warm towel wrapped around his head and then pressed up against his cheeks, as he asks for CT (cheek therapy). He is really a character. He loves that. So, now he pretty much always has a white towel draped over his head like an Arab. The staff won’t wipe his face the way he asks, so I do, It’s basically putting the enrire towel all over the front of his face just like an athlete does when he is coming off a field hot and sweaty, using a good amount of vigor as if toweling off wet hair. That’s how he likes it. Thought I better tell you in case you were wondering with the picture. Arch, what a character. Oh, thank you prayer warriors for all your love and support. We need to hear from you and to hear your stories about how you are keeping the faith and tying hard. And, breathe and never ever take it for granted. Take very good care of your lungs. And go outside and feel the incredible difference that being outside has on you and your lungs and breath. The out of doors is so essential to our health.   Here is another beautiful letter from a teacher of the variety I described above for sure! She wrote us what she said to her 5th graders: A boy Archer was hurt in the ocean this summer, and today we gather to take care of him in the best loving way we can in this moment. I can tell you some good news—People are taking REALLY good care of him. Archer is finally getting to wear T-shirts and lacrosse shorts instead of hospital gowns! He also can now use a wheelchair that he controls with puffs of his breath in a tube! He can get around to the gym at his hospital this way. By breathing! The 5th Grade’s community service theme—our main idea—is that we are GRATEFUL so we GIVE. We are grateful for so many things. We are grateful to breathe easily. Everyone, without being silly or making a lot of noise, please take two long breaths with me, breathing in as my hands go up and out as my hands go down… Breathing is so beautiful, but that is something that is very, very hard for Archer to do right now. Breathe a second and see how you pull from your chest and feel how your tummy moves. Archer has to work hard to do that… Let’s just think for a minute how beautiful our breath is and how grateful we are. Now, we want to send the BEST energy to Archer so that he can breathe more easily too.   Isn’t that just wonderful and beautiful? It is. So simple. And so profound. Thank you. We are on the eve of the three month mark, August 5 to November 5.   Where would we be with out your love and prayers. Let us pray the Creative Miracle and the prayer for Archer to Begin Again. Isn’t that so lovely. To begin again. I have so many thoughts about that simple phrase. I will save them for another conversation. God is good. Amen.   Sending love


November 3, 2015   Archer Senft November 2, 2015 DAY 91 Family & Friends Update   Archer knows.   Archer has been saying upon in-exsufflation that his right arm hurt, then of late that his chest hurt. There has been a germ of thought by his lead doctor that he may not be trying hard enough. More on that later. I knew differently. So did his body.   He said it again on Friday. One attentive nurse paid attention. God bless her. She reported it in his record and said something to another physician. So, an EKG was performed. His heart was fine. That’s actually good to know. His chest still hurt. So, they next ordered an xray of the chest. It appeared there was a change from the last xray taken in ICU. They next ordered a CT scan which required Archer to be taken to the adjoining hospital, where he spent the day on Friday. Good thing Archer’s Army had not come early for Fun Friday as they usually do, since Fun Friday at the Shepherd Haunted House was not meant to be for Archer.   As an aside, we were fine with that. The T’s had cast Archer as the goul who hangs in a corner at whom hatchets are thrown at his chest. Really. I’m not kidding. That is what they cast Archer to do. I heard from one of the T’s who thought it was perfect for Archer since he can make some pretty good faces when in pain. Really? I said, Archer sheepishly said to me he really didn’t want them to paint his chest. Paint your chest? I was horrified when I learned of it really. My Lord, his chest is already disturbing to look at, now stitched with a number of 2 to 4 inch scars on his left shoulder and many down the right sides of his chest, with pierces in various places as well, like Jesus. After all, he did undergo nine surgeries in 38 days. And throwing objects at a body that has no way to put up his hand or arm to stop something, let alone a voice to cry, No! or Stop! being cast as a dart board, for fun? Archer told me they had actors coming to do the body paint, and they planned to paint his chest to look scary and bloody and all he was supposed to do was make facial grimaces as the fake axes were thrown. Really? Honestly, Archer and I talked and thought that was not funny at all. In fact, I found it rather macabre.   Now that I think about all those surgeries and general anesthesia, I wonder if indeed some of it is still trapped in Archer’s body which has no way to move in ways we would be able to move to work it out, perhaps trapped under his right shoulder blade where general anesthesia can often lodge after surgery. Just a thought.   Anyway, Archer missed the whole Halloween thing here at Shepherd that is quite a big deal, which they spend a few weeks preparing for turning the gym into a haunted house. And while he did not want to be in the hospital, his missing the ghoulishness of disabled paraplegics and quadriplegics acting scary or being scared by other twisted characters was not exactly up our alley. I know, call me a party pooper. I probably am about Halloween, the dark side of it that is. Don’t get me wrong, I love Halloween for all the dress up and fun and creative costumes that make your laugh and smile and Halloween parades and neighborhood trick or treating and candy apples and pumpkin carvings, but how and when did all the ghoul and darkness creep in the way it has?   How did Halloween become the huge dark, bloody, gory, creepy thing it is? How did we let that happen as a society and think it is actually fun for children to have the living daylights scared out of them? Children and even adults, whose systems can’t metabolize those experiences and can’t tell the difference if the scare is real or pretend, at least in the moment for adults, but for children for nights or years afterwards. Just ask any neuroscientist. Don’t you wonder about Halloween sometimes? You know, the devil is a funny guy. Always lurking in the background waiting for a chance to slither in. Coward.   So, it just seemed like it was one of those parties it was ok to skip.   So, what did they find? Well, the CT showed Archer has blebs in the lungs. Blebs are air pockets, think about the inner tube on a bicycle tire that has a soft spot and bubbles out. Pockets of air that can be like little rice krispies. But Archer’s are the size of grapes and tangerines. Not funny. Archer has Bullous Lung Disease.   This is not something Shepherd pulmonologists are familiar with. The pulmonologist said it is not the result of the original spinal cord injury. It may have been caused by something that they did to the right lung in Atlantic City. The thoracic surgeon at Piedmont Hospital here says it has happened since he has been at Shepherd and was likely caused by the in-exsufflator. His room is now posted with large signs: no assisted coughing! No INEX.   Archer has been trying so very hard, and his body, unbeknownst to anyone, has had a weakness greater than just a respiratory issue. It’s no wonder he went from a vital capacity of 650 shortly after we got here to then 300 to then 200 when he was clearly working very hard to breathe. We can track the development of and its progression. I must keep asking questions.   I’m learning that what happens is they do a CT scan and come back and tell you the next day what he has and then they say he will need another surgery. That’s how it is. What kind of surgery? I asked. They said, Thoracic. What kind of thoracic surgery? I asked. They said, Pleurodesis. I said, He already had that at Atlanticare. They were surprised. It’s an unusual surgery, they said. I said, I’m pretty sure it was pleurodesis, right, the surgery where they blow talcum powder in to burn the chest wall and the lung so they fuse together? The one that had Archer burning for three days? Yes, that’s the one. They then said that that thus limits what they can do. I asked, What would they have done? They said, Pleurodesis. Well, what can they do now? They said they can clip the tissue that is around the blebs. But said it’s risky. I said, I believe Archer already had that surgery as well. The thoracic surgeon in Atlantic City has checked for blebs. Sadly, none of these surgeries are in the records sent to Shepherd.   The pulmonologist at Shepherd says Archer is now medically complicated and this is not their specialty. The thoracic team at Piedmont says it is complicated and they need to consult.   We are waiting. Please pray in the spaces of waiting. Please pray dear Blessed Mary.   I have asked many questions with the consulting nurse practitioner over the weekend and have requested consults for the best eyes and brains to collaborate. Emory and Johns Hopkins. And the Atlanticare surgeon. Let’s talk and figure this out together. We will be relentless in this before we do anything.   They CT scanned Archer again, back in the hospital this afternoon to see if there is any progression. Of course, if there is, it’s a game changer. Let’s pray there is no progression and we bide our time.   Two other curious things of note. Archer’s eyes are dilated. I mean they are big and the black of his pupil fills his iris. All day long. It was like this early this morning and is still this way now. I have asked about it and asked them to note this in his record. It’s unusual. He is in good spirits, very attentive. Still quiet but alert and engaged with what is going on taking it in carefully. There is just so much for him to take in. So very much. Constantly. His eyes are so dilated.   Tonight, ICU called about an hour ago and said he is leaking PVC’s re his heart so they have now scheduled some blood work early in the morning. Not sure what that is about.   We are in a holding pattern now waiting for the CT results and the meeting with the team from Piedmont and the former chair of Thoracic Dept at Emory.   Billy and I also had 90 min group conference call with Kennedy Krieger today and we hope someone puts us in touch with a thoracic at Johns Hopkins. One thing is clear to me. It would surely be a mistake to go forward with the DPS diaphragm pace makers when his right lung is not functioning even if it were helped electronically.   I can’t help but to feel that all of this is leading to something important. Something that will have in the long run lungs that are clear and bright and beautiful. Whether they are restored to perfection again the way they had been, they will be cleaned out and Archer will breathe freely. The Bullous Lung Disease may throw another wrench into Archer weaning off the vent, but it will be just another bump. Archer was so wise to insist on telling us he had pain in his chest. He is a champion of his own health.   Please pray to our adopted almost saint, Fr. Bruno Lanteri, and always to the Blessed Mother Mary to wrap their arms around our dear lionhearted boy for healing and strengthening, and for a Creative Miracle. And please pray for the thoracic surgeons at Piedmont Hospital and those from Emory and JHH and from Atlanticare as well, all from whom we seek information and viewpoint, that they might be embued with God’s holy spirit and know the best course for Archer. For wisdom guided by the Holy Spirit, let us pray. You know the power when we rest in God and turn over the larger picture to his grace. Please pray for this wisdom for our medical advisers.   You know, it’s a crazy thing but the more I think about it, Archer’s dilated eyes, well, I’m not sure how to say this exactly, but I feel the Holy Spirit is working on him.   The prayer cards for Fr. Bruno Lanteri arrived and Archer and I were praying together the prayer on the card. Before doing so, I showed Archer the card and the prayer. He was very pensive and asked, Who wrote it? I told him, Diane did with divine intervention as she was deep in prayer with the Blessed Mother. He asked, She knew of the Creative Miracle? I said, I tweeked it slightly. He said, I like how the Creative Miracle and Begin Again are written together. I like it very much. It is a beautifully written prayer.   Indeed, it is a beautifully written prayer. If you would like a prayer card, please email your request to: diane.y.beliveau@gmail.com. Archer Front Prayer Card 10-30-15     Archer Back Prayer Card 10-30-15 I gave the prayer card of Fr. Bruno to a dear friend of ours. She was accompanied by her son, who has told me in prior conversations he is an atheist. This young friend of mine has one of the purest hearts I know. Pure hearts are often fragile and have to muscle up and close up in order to survive in the secular world. I know we love each other like family even though he does not share my love of God, or even the acknowledgment that there is a God. So, I asked him if he’d like to pray for a Creative Miracle too. He said, Only if you want me to. I said, I want you to. He said, I will then.   That was a gift. He will find strength for his pure heart in prayer.   I attach a picture of the prayer card and the explanation. Why ask for Fr. Bruno Lanteri to intercede for Archer Senft? On August 5, 2015, Archer Senft, age 17, suffered a traumatic C5 burst spinal cord injury. His injury is classified as C4 ASIA 4 – Quadriplegic –Complete. The injury occurred while taking a dip in the ocean to cool off after working the lunch rush as the grill cook at the Beach Club of Cape May, New Jersey. Archer is a vibrant and talented young man who hopes to recover fully with the help of prayer, support and rehabilitation therapies. (To read updates about Archer, please visit: www.BeingRelational.com)   In the Catholic faith, the feast day of a saint is the date of their death. Venerable Bruno Lanteri’s death was August 5, 1830. Almost 200 years have passed since his death and his cause for canonization is underway. Canonization requires two miracles supported with evidence authenticating the intercessory prayer of the deceased venerable. During his life, Ven. Lanteri sought God’s glory in all things and was utterly unconcerned about himself. He had a fervent devotion to the Blessed Virgin Mary who he took as his own Mother when his biological mother died when he was only 4 years old.   At age 17, Bruno Lanteri attempted to join the Carthusians but was denied due to fragile health with an affliction referred to as ‘weakness of the chest’. This was a turning point for Bruno and the first step to a new beginning as a diocesan priest and eventually the founder of the Oblates of the Blessed Virgin Mary. Like Bruno, Archer is in need of a new beginning. With firm faith and unwavering hope, please join us in our prayer to Ven. Bruno Lanteri to intercede for the whole and complete healing of Archer so that he may begin again with a Creative Miracle for God’s greater glory through his chosen channel of grace!   Visit www.omvusa.org for more information or http://brunolanteri.org/?page_id=29 Bruno Lanteri’s biography ‘Begin Again’ by Timothy Gallagher, O.M.V., can be ordered from the above websites. To order more prayer cards email: diane.y.beliveau@gmail.com   Venerable Fr. Bruno Lanteri’s Cause for Canonization   “The Church, in declaring Fr. Bruno Lanteri Venerable, recognized his heroic virtue and that he was a powerful, effective channel of God’s grace.”   Even at the time of Fr. Bruno Lanteri’s death on August 5, 1830, many regarded him as a saint. It was not until 1919, that the Oblates of the Virgin Mary introduced his cause. On August 5, 1930, the 100th anniversary of the Founder’s death, the Oblates named Father Tommaso Piatti as postulator of the cause. At this point, Fr. Bruno Lanteri became “Servant of God.” The Church formally recognized Bruno’s heroic virtue and declared him “Venerable” on November 23, 1965. Evidence of a physical miracle through his intercession is still required in order for Fr. Bruno Lanteri to be beatified. An additional miracle will be required for canonization. Even though some have reported “miracles” through Fr. Lanteri’s intercession, such miracles have not been able to be sufficiently verified.   Perhaps one of the reasons that it has taken so long for Lanteri’s cause to progress is that no biography existed until 1870, forty years after his death. Other biographies, all in Italian, were more scholarly and historical, and less accessible to devotional readers. The first popular biography in English, “A Cross for Napoleon” (St. Paul Editions, 1980), was a translation of Leon Cristiani’s French text originally published in 1957. A comic book version of his life was produced in 2009, to mark the 250th anniversary of Bruno’s birth. On September 1, 2013, Crossroad Publishing released “Begin Again: The Life and Spiritual Legacy of Bruno Lanteri,” by Fr. Timothy M. Gallagher, OMV. As a best-selling author and a member of the congregation Lanteri founded, Fr. Gallagher has crafted this biography with historical precision, spiritual insight, and engaging personal connection to the saintly priest of Turin. Copies can be ordered at www.frtimothygallagher.org.   I like that picture of Arch. He has his arm around his grandmother who cannot be seen in the upclose version, just a week or so before the injury. So hard to believe. That 80th birthday party in Illinois was such a good time. I am so glad we all had that time together. It was really renewing. Hard as it is to get so many family together, it is so good for the now and the future to get together. Gosh, whenever there is a big birthday in your family, 40, 50, 60,70, 75, 80, 85, 90, 95, 100!, it’s really really worth the time to gather family together. It’s a heck of a lot better than waiting until funerals. Even if not everyone can come. Gather what you can. Just do it. A picnic is a wonderful way in every part of the country to celebrate. Out of doors, homemade food, cake and drink. Old fashioned and timeless. So simple, so important.   Anytime we get together to eat and drink it’s significant. Things happen when we gather to break bread and celebrate. We get closer, stronger, more connected. It’s always worth the effort to plan, to contribute, to show up.   Speaking of food, my brother Will started in our room our treat basket for the staff a number of weeks ago. We have received delicious boxes of chocolates, homemade cookies and macaroons. We can’t begin to eat them all (you know what I’m starting to look like). Regardless, it just feels good to share. So last night one of the male techs working on Archer whom I haven’t seen in a few weeks was assigned to us. I let him know to please help himself to some of the treats I had added to the food basket. I then got him a paper plate which I have in the room thanks to the Atlanta Raphael comfort angels. Well, I had to chuckle when he literally looked like Santa Claus tippy toeing out of the room with a plate piled with cookies and confections at least 6 inches high I kid you not. I loved that. He was so happy. Isn’t that sweet. Thank you, angels. We feed each other. For all of you who send us and bring us food, you are not only feeding us, you are feeding others. Isn’t that lovely. Sharing food. Something unifying about that. Sustaining. Sacred.   While at Mass yesterday, I watched an old usher man with a limp, who in his Sunday suit now baggy over his thinning arms and frame, walked up the aisle to direct folks to communion. As he did so, he threw his left leg out to the side with each step. You know, I said to myself, He has a story. And then I thought, We all have a story.   I wondered if I would have overlooked him before Archer’s injury. I hope not. But I might have. Or I may have noticed but not stopped to think more about him, his story. What we see, like his limp, can let us know there is most likely a story. Maybe, maybe not. But what about what we can’t see? And what about most of us? Physically disabled or not, we really all have a story. Often a deeper more profound story. It is as unique to you as your thumb print.   I love each story I hear. We are a collection of many stories. We are also of course more than our stories, and our story doesn’t have to define us. But our stories shape us and help us discern the person we want to be now. Write your story, or tell your children a piece of it. I bet there is something in your story that your spouse of many years or your best friend, or even your sister or brother, does not know that you can tell them. I think we yearn to be connected on a human to human level, and our personal history and where we come from and what we experienced in a certain time and place, how we reflect on it now and the insight we have with the benefit of hindsight, who we are and who we are becoming is all cherished.   It’s those stories in my head I can also recount in my conversations I have with God. They allow me to muse a bit and to be comforted by how much he already knows, even when I go to share my latest chapter of my story with him to ask for guidance.   When I was at church yesterday, I felt the tears well up in my eyes when I heard the choir chanting softly, Lamb of God. You take away the sins of the world. Have mercy on us. It is so very powerful. Our sins being taken away. And now we are free.   I want to make sure I forgive as I have been forgiven. I don’t always, especially when I am still working out what I perceive to be someone who did something wrong with an abuse of power or lack of responsibility or something like that. I am sensitive to that. Especially an act that I perceive has harmed someone I love. I know that a piece of that perception has to be faulty, or incomplete and so I look within and ask myself, What is it I am to learn here. Is it really an abuse of power, or lack of responsibility. Did I play a role. What else do I not know and need to. I want to strive to see the other as a more whole person.   There is one person I am working on having to do that with right now: Archer’s lead doctor who went so far as to say that based on the outpouring of cards and support in his room, Archer was obviously in a class of privilege to have so much support and that he also probably never had to work hard for anything in his life, as she registered her view of his lack of his being weaned off his vent.   She seriously mistook love and support for weakness. It stunned me. Perhaps it stuns you too. It literally felt like a sucker punch. I stayed really grounded when she said it and asked what she meant. I got angry later. Hard work? We called a meeting with the pulmonologist who said there is nothing more Archer could do. And now, in the last five days we have a thoracic surgeon who says there is no amount of effort that can change Archer’s ability to advance off the ventilator, which now may be even longer. And the Respiratory Therapists on Archer’s team say he can cough and shake his chest like no one else, the new definition of shake, rattle and roll. So, what she said was out of alignment, not grounded; it didn’t line up with reality.   We got that straightened out but whatever the source or reason, the part that is most stunning to me is how little a lead doctor focused purely on muscle and rehab knows about the patient. About the full patient. The whole patient. Who they are.   I will copy here an excerpt of a letter I wrote last weekend about Archer. As I copy it, I realize, you might write your own about your child, in fact I think I will do the same for Paula, Pete, Dewey and Dutch. As I also think about it and that doctor, proficient as she is, we all have our own baggage. If we are not self aware, which is what I’d say was the chief barrier, our narrow vision can actually create big blind spots. We all have to be on guard for this. Especially those of us who have a lot of power. I mean our blind spots can really cloud reality. And be quite destructive to others. Blind spots usually come from unresolved old wounds we are still carrying around from the past. We all have our blind spots.   Anyway, my anger fueled an intense desire that she know Archer. If she knew Archer, she would never have said nor thought that. I believe that. Regardless of her biases. Knowing him would widen her lens. Not just his level of injury and how well he was doing in rehab or how disappointed she was with how he was doing because of ongoing breathing issues, but I wanted her to know him. And because it was so important, I wanted it to be on the record if you will so that she would not continue to mistake the love and support being shown to Archer for a type of weakness. I know, it’s stunning. Yes, she said that. It’s true. But you know, sometimes pure love brings out darkness, like sucking poison out of a snake bite. She might have her own demons to examine. We all do from time to time don’t we? We will forgive her, but it doesn’t mean I do so by pretending she didn’t say and do what she did. No, I was angered by it, it was an abuse of power as her blind spot informed her decision making. I asked for a face to face dialogue, which was very difficult to get but did finally happen, and I sent this as part of a longer letter. So, this is what I said about Archer.   As a mother, there is only one mission here: the best care for our son. … In a medical nutshell, Archer Senft age 17 broke his neck at C5 burst, drowned in the ocean, was rescued after being head down over 2 minutes and was fighting for his life for 30 days in ICU until he was transferred to Shepherd ICU where he was still fighting for his life for another 14 days.   Archer had had 3 cardiac arrests, a pace maker, lungs collapsing, lung surgery, 3 chest tubes, and a total of 9 surgeries in 38 days, 6 of them under general anesthesia. Shepherd gave him a level of injury of C4 ASIA A, complete.   I’ll fight for our son, I’ll question authority that is not explained, I’ll be relentless in the pursuit of collaboration which often requires walking through fires together, and I’ll be unwavering in my belief in Archer’s future. He has been unwavering in the efforts he has given to live and to his breathing.   It might be helpful for everyone on Archer’s team to know a tiny bit about Archer the young man. Archer is the fourth of 5 children. He is the third son. He is adored by his brothers and sister, and he does all kinds of clever and creative and delicious things for them. Always has. Archer is loved and lovable.   Archer has worked full time in the summers since he was 14, getting himself up every morning and riding his bike 3 miles to work. He is reliable.   Archer has paid for his own clothes and phone since 15. He is responsible.   Archer is an athlete in two sports, would have been varsity this year, with hard practices daily to fill highly competitive spots on each team. His school is number one in the state for most titles held, every year. He is a team player.   Archer started his own sports jerseys business at 14 and shared his profits with all his friends who told others about his business. He is generous.   Archer works to pays his own car insurance ($600 in Baltimore City) for the privilege of driving since he turned 16. He is a good citizen.   Archer was the chief cook running the kitchen at the Beach Club of Cape May where his injury occurred. He held that post at 16 and turned 17 two weeks before his injury. It’s long hours in a hot greasy kitchen. Archer is a hard worker and puts up with a lot of physical discomforts.   I will tell you a bit more about Archer.   Archer has been deaf as a result of cholesteotoma from 3-12 yrs of age with annual surgeries lasting 4-6 hours at Johns Hopkins where they’d have to drill through his mastoid to the middle ear to scrape, rebuild and later to implant, as a team of general anesthesiologists worked alongside this tedious surgery. Archer is courageous.   After each of those surgeries for six years, Archer was required to lie very still for 3-4 weeks and not move for full recovery. Archer is disciplined.   As a result of the cholesteotoma and last surgery, Archer’s nerve in his face for taste was severed. Hopefully it will regenerate itself by the end of his teens. Despite this, Archer loves to cook. Archer is resilient.   Archer is a straight A student, taking AP and Honors courses in high school, even as a sophomore, working on very difficult chemistry, calculus, physics, history, government, English literature, Spanish, advanced drawing and painting that he works to master. Archer is gifted, rises to a challenge and is intellectually stimulated.   Archer stays up late after doing his homework and works 2-3 hrs a night drawing (he’s a portrait artist and logoist) or on music (he’s a pianist). It takes hours to be good. Archer is committed to quality.   Archer has been commissioned by adults for his artwork. He insists on doing it for free. He has already experienced work that is very fulfilling. Archer is big hearted.   Archer has not participated in some activities and has participated in others. He has not always been treated kindly by his peers. Archer is forgiving.   Archer works on sketches, canvases, surf boards, any surface with pre drawings and designs in his head. He has all kinds of colored pencils, markers. Then he just goes for it. Archer is confident with manifesting his imagination.   Archer is a brother and friend who extends himself to little kids and looks up to and holds his own with older kids always being himself. Archer is authentic.   Archer is cerebral and thoughtful and often spends time thinking rather than chatting. Archer is serious.   Archer has an amazing sense of ascetics and how things work and present. He will produce things : music compositions, play lists, comical character sketches, key lime pie or cheesecake or other desserts with a perfect peel of lime or dust of confectioners sugar, all things that make people feel good and happy. Archer is connected to others and kind.   Archer can make just about anybody smile or laugh with his wit, often embedded in his carefully drawn drawings or graffiti or logos. Archer is subtle and creative.   Archer has many friends, boys and girls, he is close with from grade school and new friends from high school. He is known for being philosophical and thoughtful. He is also easy to be around.   Archer will go to Mass on his own whether biking on Saturday evenings in the summer or get up on his own at home. Archer has inner strength and a relationship with God.   Archer is also wondering about his future. He wonders about what he can and cannot do. He is sensitive to not wanting to be a burden. He is fearful about not knowing. Archer is afraid.   We need to work together to do all we can for this lionhearted boy so he can begin again.   That’s it. Thank you.   Ever since the meeting and I wrote the longer letter, Archer’s team has been exceptionally kind and encouraging. We noticed and it’s good. I pray I was a good mother and did the right thing. It’s hard sometimes with all that is coming at us. Please pray for me that I am a good mother.   Please breathe deeply, all of us. Please send healing energy to Archer’s right lung. See it, see those pockets of air trapped by lung tissue, crowding out space for air to circulate and be absorbed in his lung. Please pray for Archer to breathe again, free from the ventilator. Breath. How life saving it is . Breath. How freeing it is. Breath. How sustaining it is.   Let us all count our blessings. Archer and I count ours daily. We are truly blessed. You are such a big part of our blessings. Thank you, God, for all these dear friends and family and friends of friends of friends who believe. We are truly in this together.   Hail Mary, full of grace, pray for us. Fr. Bruno Lanteri, intercede that Archer will begin again. Dear Lord God, please have mercy and bring about a Creative Miracle.   Amen.


October 28, 2015 IMG_9515     October 25, 2015 DAY 84 Tuesday   I just want the best care for our son.   It has been a very difficult two weeks since I last talked with you. Suffice it to say, no matter how hard Archer may try, his body needs more time. The standard number of weeks of rehab at Shepherd has come and gone, and his body is not showing any new impulses to work with nor his breathing showing enough improvement to elongate his stay.   Just another bump, that’s all it is I tell myself. Just another bump, and it’ll be alright. It is painful to think of discharge, but discharge it will be. We are beyond their normal 4-6weeks. We are lucky enough to get this length of time given his condition. That said, he could have, would have, should have been able to stay longer. Wait, there I go again. Don’t do it, Louise. Those could have, would have, should haves will eat me alive; I’ve got to move on. We had the meeting. Indeed we’ve had a few meetings, many meetings. I’ve advocated and cajoled and Archer has requested and been clear that we want more time for his body. In our begging, borrowing and pleading, the stay has been extended twice. Billy and I now feel it’s time to go home.   We will be in an air ambulance back to Baltimore on the morning of November 11. It feels right and appropriate, November 11, Veterans Day. Our lionhearted veteran will return to his hometown prayer warriors, Baltimore, the home base of Archer’s Army.   We will head to Kennedy Krieger and hope to get strong enough there to enter an outpatient program thereafter, back into aggressive rehab for the next level.   To let you know the good stuff, Archer’s progress. It’s really awesome. Here’s what he’s been able to do the last two weeks and it’s all really big:   Archer no longer requires the deep lung suctions! Almost all of his lung suctions are with the in-exsufflator vacuum. And, he is now tolerating it well, without his right shoulder thrown out from the violent assisted coughing.   Archer got his neck brace off! His neck bone is healed and now it’s all about strengthening.   Archer is no longer using sip and puff on his power chair! He uses the T bar with his left hand as a result of the arm splint mobilized by the strengthened left bicep.   He only takes Motrin for his pain!, ok, a Tylenol 3 with codeine every once in awhile when the transport in the Hoyer lift from his bed to his powerchair is not smooth and he wrenches his right shoulder out again, or it starts the bad muscle spasms again but that is infrequent. He’s come a long way from his 7-8 regularly on the pain scale. Dang, let’s just celebrate that. Right? Yes! To be free of the pain as if you had a broken scapula and a machine would move it back and forth. Pain be gone! Think of the last time you had a sharp acute pain. Like stubbing your toe in the dark or having something drop or slam on a toe or finger and it smarts so bad. And then, it just subsides and you are grateful. So grateful. And you become aware again of your breath because you sigh, a sigh of relief. A sigh of gratitude. It has passed. I think and hope Archer’s right shoulder pain has passed as well.   The cuff on his tracheotomy is deflated about 2ccs of air 4 hours a day for talking, and we have started to hear parts of his voice. Talking! Voicing! Rough and slow but sure! While it is very difficult for him, he’s trying and doing it well. And he tried voice texting! I was the beneficiary from an Atlanta Angel working with him. We’re seeking further information on the impact if any at this point of healing of his scissored vocal cords, likely from the vent being in for so long in Atlantic City.   While his appetite has not increased, his resolve to eat is stronger and he has eaten up to 2700 calories on some days, especially on visits by Archer’s Army friends on the weekend when he has no therapies and we can do small bites all day long! Ok, so some of it gets vomited back up, but he’s trying to put it in. Yes, he still has ongoing nausea.   He uses the Mobile Arm Support for eating mandarin oranges or other easily forkable food daily, although it is pretty hard.   He had his first art class and used the Mobile Arm Support with a pencil and charcoal stylus. I asked Archer what it was that he drew. He told me, A snail.   And the other drawing? He said, A landscape. A landscape, eh? Oh, yes. Hmm, tell me what’s there. He said, Mountains…birds… and haystacks on the hill. Oh, yes, I see them now.   I am attaching them for you to see.   IMG_9526     IMG_9527     It’s a far cry from his pencil portraits, attached as well.   IMG_9426     IMG_9427   It’s hard to tell if it was satisfying to him or not. He didn’t want to do it again, so I worry that he was disappointed or something stronger like disgust or hopelessness that made him down. We’ll have to work on that. Please pray for acceptance of what is presented today while we hold out the hope for tomorrow. Hope, she is our friend. Archer would like to have more help with art and technology so that is good. We will welcome help in that area, especially as we hope to raise the funds to build out an art studio for him if he finds joy in being an artist again.   We are planning to cut the feeding tube in the next week. That’s pretty huge too. One less implant in his body. We hope to have a GI evaluation of the innervation of the pyloric muscle before we cut it and have it removed though, so we will clamp it rather than remove it until we are sure he can hold down food, or enough food despite the nausea so that he doesn’t lose too much more weight. And,   He will have surgery this week for a suprapubic catheter. It’s an other invasion, another scar of so many on his body and another device implanted, but a move towards greater independence hopefully someday.   Isn’t this amazing? It is! It is! It is! For those who see Archer now compared to even two weeks ago, the progress is dramatic. So why is this not enough to go to the next level when it’s neither an insurance issue nor a desire issue? I asked that many times myself. In a nutshell, Archer’s right diaphragm is not innervated. For that matter, his entire right side is not innervated. His left diaphragm is doing all the work for his breathing, still aided by a ventilator, but it too does not have enough innervation to move his lungs up and down to breathe on his own.   Shepherd is about aggressive rehab. The kind of rehab we have benefited from no doubt. But a patient needs to be weaned off a vent, something they specialize in, and have the current level of injury improve with new impulses or sensations coming on line in order to go to the next level. The next level for some like Archer may have been a another week or more in inpatient or, more typically in about 52% of their patients, directly into their Day Program. I was surprised when Archer’s lead doctor said no one stays in inpatient rehab past six weeks. We were definitely under an impression we’d be here 12 weeks. Our druthers had been to get home before the holidays but 4-6 weeks would leave Archer in a pretty bad way, since he’s still– because of the one day of bed sore beginings 3 weeks and 3 days ago—having to be rotated 3 hours into bed, 2 hours in a chair with 15 min weight shifts which has also interfered with therapies that would normally be in a gym, not to mention the ongoing time to be suctioned and inexosufflated. Poor Arch! It is really is quite something. But the other families I heard from were awesome in rooting me on to ask for more time and how to do that. So, as I learned from others that while many are sent home after 4 weeks, if the level of injury is changing and the body is showing new impulses and muscle groups coming on line, more can happen. While that was not happening for Archer’s body, he certainly is making steady progress on the vent weaning. That said, try as Shepherd might, even with their aggressive approaches to vent weaning, they are not able to wean Archer’s body from and his need for his ventilator. And try as Archer might, he cannot consistently blow more than 300 of vital capacity. He needs 1000. Those stubborn mucous plugs continue.   As they say, Archer has met the goals for his level of injury and there are no new goals to set. Archer has, in their words, plateaued. Yep, plateaued. That’s what they said.   It’s crushing to me It’s certainly disappointing for all. Even as we put the full hard court press boot camp on the past two weeks, and I mean it has been rough all around the board, it’s not enough. Despite other dramatic progress points, Archer’s lungs remain in regular need of suctioning, and his progress points are consistent with his level of injury, what they would hope and expect. So, it’s good in one respect but sad in another. He’s exhausted and I think it fair to say, he’s scared. Scared of the prospect of coming home still on the vent. If anything goes wrong, he can’t breathe. That’s a biggie. It really is. It has to do with our family’s training and growing knowledge and familiarity with what the machines and devices do and how to use them, having a medical care team of new people at home and friends, in time, that know this, having a separate electrical system in Archer’s living quarters we are having to remodel at home to regulate the cold room temperature and the constant need for electricity for his vent, having to install a back up gas generator to hedge against and be prepared for any power outage of any variety of electrical shut down this winter, and having someone 24-7 available and very near to assist him when in need of suctioning and in-exsufflation, saline squirts into his tracheotomy and biocarbonate treatments and vest shake ups. There’s a lot legitimately for Archer to have anxiety about. He is truly at the mercy of us and of his caregivers.   So, it seems that this situation will either create a neurotic embittered frightened young man or it will be an opportunity for deep trust on Archer’s part and serious commitment of us and others to his well-being. I choose and pray for the latter course for us all. And that is what we have been double dog doing the last week once we figured it out, got more time and, what Bill and I will be doing the next couple weeks in high definition. Please say a prayer for us that we are doing the right thing, that Shepherd is doing the right thing, and that Archer will be Ok once we leave Shepherd, headed for home, with a stop at Kennedy Krieger Institute who will care for his respiratory perhaps in a way Shepherd was not able, and that Archer is confident of his caregivers both familiar and unfamiliar.   Oh, to have confidence in those who care for us, those on whom we rely. Think about it, there might not even be anyone in your life you rely upon so much that it would be death without them or their help. I pray you do not have that situation. But that is Archer’s situation. Like a newborn baby. It’s exactly like that. And with his voice limited, it’s exactly like that. You read what the baby needs by his face and sounds in many respects, and I might add that most of the work and care is love. How critical it also is to have caregivers who genuinely want to love you and do what is best to take care of your basic needs and as well as your other needs. Since Archer is hardly a baby, think of a situation whether at work or at home when you had a good hire or a dear friend or a solid family member on whom you relied to run your affairs or to babysit for you and take care of your children. Someone who was a regular. Someone on whom you really depended. Perhaps replaceable but not easily. That person was kind and competent enough that you entrusted them with your most important matters, your child, your livelihood, your peace of mind that something very important to you was being handled well and handled with great care. It allowed you to have the ability to do other necessary things without anxiety; you trusted them completely, you knew and believed they were good for you, your business, or your children because they cared about their welfare and acted on that care. Now imagine the prospect of losing her or him, whether real or imagined. Suddenly. Such an abrupt loss could send panic waves. And there would be real and not imagined floundering around for awhile trying to figure it out and reestablish some homeostasis. Those panic waves are what I think Archer feels. Like being cut from the umbilical cord. And in his case, it truly is life or death. So, the question of where do I go next? Regarding his breathing and continued strengthening is a fundamental one about life itself.   We now have a plan. In just a little over two weeks, Archer will be leaving the staff that is highly trained in ventilators and various breathing and respiratory machines, devices and techniques. They have been life sustaining. I want to pause. Please pause with me a moment. Let us thank all those we rely upon for the basic needs that matter the most to us in our lives. All the caregivers in our lives. We all have some, or at least we had some. And you are probably a caregiver now yourself whether to your children or to your parents or to a friend in need. Thank yourself! Or maybe someone will thank you. Maybe we will thank each other. I will thank you. I thank you now. Thank your Care Giver Day! What would our world be like if we didn’t take care of each other. And thank each other and hold each other with great respect and gratitude, even through the bumps and work outs. With our various levels of expertise, thinking of ourselves as caregivers for each other, we do our best. We really need each other. Thank you wonderful care givers, care providers and care takers. Givers and Takers. Takers and Givers. Both. Count your blessings as I count mine to be both, different as they may be. Thank you, dear God for our care givers. Especially the good ones. And thank you for the ones who are not so good who are tying in their own way. And thank you for the ones who put up with us and the burden of caring and proving care, day in and day out. We are grateful for our good caregivers at Shepherd.   That said, I suppose there is a certain relief that the yo-yo of the last three weeks of stress and Archer’s status, progress, and potential at least for now is settled, and the anticipation of going home is beginning to replace that stress. We look forward to Archer’s being at Kennedy Krieger Institute. And I wonder since Archer will be back in Baltimore at KKI but not yet at home if I will experience the back and forth longing, now also for Atlanta, where the Atlanta Arch Angels are.   Longing. Hmm. It’s nutty, but I’ve almost become addicted to the feeling of longing. It is so closely connected and bound up in relationship and love. I have to be discerning about what is healthy as I feel very deeply about people, one way or the other. The longing has a physical quality.   I felt that achiness in Archer’s ICU room in Atlantic City as the calendar told me the summer was ending and Pete and Dewey began preparations to go back to college, Paula back to her admissions job, and Dutch back to grade school. Dutch, 7th grade, now 5’8” tall as he grew again in August as all my boys do, where had my little boy gone. I missed them just at the thought of summer ending, even though we had spent almost half our summer in an ICU in an unfamiliar city in a food cooler cold room. I missed them at the thought of their going. And then when Archer and I flew to Atlanta, I felt that longing sharply for Baltimore. And, here we have been in Atlanta for over two months now, getting ready to leave, and I feel the onset of knowing I will miss our Atlanta Arch Angels and longing for the closeness of the daily texts about Archer and food and inspired prayer and coordinated transportation. So, I see my pattern. Anticipating, longing, missing. It’s good to know. I can catch myself in it before I get too wound up in it. Do you see any patterns you have? It’s really good to see them I think. This longing pattern of mine. The separation theme, Ok Ok, sure, I know, yes, I’ve had years of good work on it though intution teaching and Enneagram work and practice with fellow teachers. The best way to do about 10 years worth of sitting on the cushion work is to sharpen your awareness and self observe your habits of the mind and heart. I’ve been at that for years. I get it, my pattern. It’s rooted in a connection to others that gives me juice and life. It’s gets snagged however from time to time related to the wounding of when I lost my Dad tragically in a commercial airline crash when I was 3 ½. Got it. I know that. And it’s such a blessing to know because I can observe myself and there I am again, can be stopped at the pass if you will or if underway, I can become more curious about it than clamping it. Big difference. So, I have been curious about my yearning and longing pattern I am sensing here at Shepherd. I think it’s kicking up again, because we so need your prayers, and like so many things, energy can fade and peter out. We need you to consider not petering out on Archer. He needs your collective prayers of the Creative Miracle. He needs your pausing and breathwork. He needs you to marvel at how beautifully you move and walk through your day and send that joy and rejoicing and wonder to him. That’s all. I don’t want our move to cause a loss of connection with you, a return to lives where we don’t feel this powerful connection through prayer.   It’s also just a little reminder to myself that with two weeks left here, I know I will have to find a new center, a new rooting, a new nesting once we are uprooted again, ironically back to home. If I am going to live somewhere, I set down roots pretty quickly. It’s always been this way for me as long as I can remember. Whether as a small child before gradeschool days in a make-believe house under a coffee table in the living room, or a platform tent for summer camp, or a dorm room in college, or an apartment or house rented or owned, I am a nester. I like to create warm and cozy places. I feel connection. I want connection. I need connection. I like to create connection around me and with others. Maybe you are a nester too. If so, let’s say hello to all the nesters! I get a kick out of my kids as I see that they are too as they get older especially.   In the last two weeks as we were negotiating a discharge plan and I would be in Archer’s room here in Atlanta, especially at night, when I awakened when I was not otherwise awakened or summoned, I would find my mind really thinking about Dutch and Billy, and missing my office! I would then get these twinges of really missing Archer deeply and longing to have him back whole and complete, to hear his voice, to hear his ideas, his wit, his deep philosophical thoughts. It makes me wonder.   What might Archer long for. There is a beauty in his youth. As tragic as it is that he is so young and now paralyzed, there is an aspect of his being so young that he might actually be spared some pain, pain from what he hasn’t yet experienced in life that he would have if he were older and therefore does not know. He may thus be spared some achiness in the future of what he might have longed for. That occurs to me and I am grateful.   I wonder what Archer’s heart will desire the most as the years unfold. I think of his future. His friends, his career choices, his love life, his well-being, his maybe future family. I think about so many things. And you want to know something crazy. Back in Atlantic City ICU, an hour after the August 5 midnight neck surgery when the surgeon was talking to us as a family, I was listening very carefully as he told us what he had done in the operation. That our son had broken his neck at C5. I am here to answer any questions you might have, said our doctor. I really had only one question: Will our son be able to have a family? That’s all I could think about then. How crazy is that. I can still see and feel the space of that room. I looked around the makeshift circle of chairs at all of our children. There was utter silence. I repeated my question, Well, will he? I felt this shrill sort of desperation in my voice. And then I began on the verge of weeping as if I were beseeching my own children’s understanding of something very deep within me, within their mother. I implored the surgeon, Will he have the ability to have a family?…..Will Archer have the use of his arms? Will he be able to hold someone? Hold a baby? Will he ever know the arms of a woman, her softness and what it is like to be held? Will he? There was dead silence. Will he? And I looked around at my children who were just staring at me in that waiting room, and I began to cry. I looked at them and said, It’s true. You will know someday. The love and the physical ability to hold and be held closely by your love is so very important to the body and the warmth of the soul. I want that for all of you. I want that for Archer.   I looked at the surgeon, Will he?   I remember that moment, that space, so vividly as I just wonder now about what Shepherd said about Archer plateauing. Archer’s future.   I recall now each of the faces of my children and Pete’s girlfriend too and having one of those moments where I looked at them each as adults, in this raw and very truthful moment and I wanted them to know what I knew and to honor it and not ever tarnish it, to know how good physical intimacy is and how important it is to cherish and steward.   Our surgeon said the level of Archer’s injury, higher up on the C-spine rather than the lower spind, would likely allow him have children someday. I can’t tell you the relief and peace that gave me then and still now.   I am sure I was still in shock and that why his future ability to have a family was all I could think about. I’ll never fully know. Pretty crazy. But family is everything to me. It was true and it’s still true.   The surgeon continued, As for Archer’s arms, we just don’t know. We don’t know. It is hard to say what will happen from these kinds of injuries. He is a burst. It’s like this, he said, Some people break their necks and it’s a fracture, it causes paralysis but it is very temporary because the vertebrae still protects the spinal cord. People regain their arms and hands and even walk again in a short period of time. Archer, well… his kind of break… it’s as if someone took a hammer and smashed his spinal cord.   Oh my God. Shock. That image was almost too much and I felt almost like my head was not attached to my own body.   He said, So we just don’t know. We don’t know.   And so, yesterday and today in Atlanta, we experience yet another shock point: What Shepherd tells us they do know. It is time to discharge Archer because he has plateaued.   Plateaued. Almost a dirty word. Ok. We will absorb this shock as we have tried to do with the others, metabolize it and move forward.   Shock. You know another funny thought just raced through my mind just now as I said that, well not really funny but you know what I mean. I have not really thought about this before. But a mere few hours before that meeting I just told you about with the surgeon in Atlantic City, I had been driving from Cape May back to Baltimore. Ironically I was already lost on the new Garden State Parkway as they removed in the last year with new construction all the regular exits. With all the visuals gone, I had flown past our exit and was in the process of winding my way back on rural byways to a familiar route back to Baltimore when I received THE CALL. It was 3:42pm, August 5.   I must have gone into shock soon thereafter as I remember now as I think about it being very disoriented and not being able to find the Garden State Parkway to get to Atlantic City. I recall refreshing my GPS on my iphone over and over again trying to get to my son. You know how you can refresh when you are on a highway and it sometimes tracks you as if you are on a side road when there are many small roads that abut the highway directly. Well, maybe it’s just in southern New Jersey, but there were no signs that matched up with the directions being shown, or that was my experience. I remember thinking that I might go crazy. I might really lose it. I remember saying to myself, this is real, we’ll be alright. Archer will be alright. He’ll be alright.   But before that, on the call itself, I remember crystal clearly asking the courageous caller, our dear family friend Davis, only two questions very simply and matter of factly.   As I answered the call, he had said slowly, Mrs. Senft, this is Davis. Archer has had an accident. He took a swim in the ocean and his head hit a sandbar. He broke his neck, Mrs. Senft. We have him. He’s here on the beach. Davis, I said, Is Archer breathing? Yes, Mrs. Senft, he is. Davis, is Archer talking? Yes, Mrs. Senft, he is talking. Davis, can you understand him, is his mind clear? Yes, Mrs. Senft, he is talking.   My son is alive, is conscious and he can talk. That was enough. I kept repeating out loud to myself, My son is alive and he is talking. My son is alive and he is talking. It never crossed my mind when he said, Mrs. Senft, Archer has had an accident and has broken his neck…to ask, Davis, can Archer move his arms? Davis, can Archer move his fingers? Davis, can Archer move his legs? I had no idea what it meant to break your neck like this. No idea.   Petey and Megan were here this past weekend. I was tidying up. I ran across a little piece of yellow lined paper, like from a small notepad that Pete had given me some weeks ago in the ICU. I asked him what it was. He shook his head and said, Mom, don’t you remember this? I did not. It was Pete’s handwriting on the little yellow oblonged paper. I swear, I’d never seen that yellow piece of paper before. On it in Pete had printed:   • Archer injured his neck • We are in Atlantic City Medical, Trauma II • You drove your car here. (Ford Escape) • The incident occurred at 3:30pm • The date is August 5th, Wednesday • Archer was working at the Beach Club and after cleaning kitchen, came down to cool off but jumped in shallow water and injured his neck • Your family will be here soon.   I read it and said, What is that? Petey said, Yeah, Mom, that’s what I had to write down for you when you arrived at the hospital. You kept asking the same questions over and over. And all you wanted was to know where the chapel was. You kept saying you had to get to a chapel. Over and over. You tried to get on your knees in the chapel. They had to put you in a wheelchair. They thought you were having a breakdown. Don’t you remember, Mom?   I don’t.   I have no memory of any of that.   A shock point I will probably have to go back to metabolize better.   Our sweet kind smart intelligent athletic lionhearted Archer. He has not wavered in his number one desire to breathe on his own. It is his top priority. It is so very very critical and oh so powerful, the breath. The ease. The energy, the rest. Let’s all breathe. It’s never ever old or worn out to breath with intention. To breath with intention together is very powerful high medicine. It is so good for us. It is so good to breathe together. In unity. And even if you catch your breath, or hold your breath, it’s all ok. You have breath. Focus on your breath. Right now in this moment…… …………………………………………Follow your breath…………… Now, see if you can just allow your breath to breathe you…………………………. Isn’t that nice. It’s so good. It’s God’s gift to us. Life.   Archer’s pulmonologist and I have had many a long early A.M. discussion, more like mornings of discernment, about whether or not to do another surgery to put in two diaphragm pace makers. Yes, I think I’ve mentioned them to you before. It’s true. It’s unusual and not done very often, but there is such a thing, DPS it’s called. Archer is a good candidate they say. Problem is, he has a cardiac pace maker. A pace maker sends electrical impulses to the part of the body that has the electrical wires attached to it. Can’t do both. It would be mandatory to turn Archer’s cardiac pace maker off. We reset the parameters and removed the upper parameter if his heart races; this was done a couple weeks ago, bedside with a computer. Amazing. But if we did the DPS and the cardiac pacemaker were firing at all, and the DPS was firing, they would short each other out and you get the picture. Here we go again. Archer is complicated. Too sick to continue further rehab at Shepherd, not sick enough to be in an ICU. Good candidate for DPS, but not if pace maker which no one is willing to remove if he might need it when he’s breathing on his own. Catch 22. No man’s land. But that’s not the full extent of the dilemma. It’s very hard to say if Archer’s diaphragm may, in say another 8 months, get enough innervation to work enough on it’s own to not need a DPS at all. So, we could wait and see, and if no improvement then insert the two DPS in his left and right diaphragm, or do it now for quality of life but with the risk of life noted above plus another surgery, plus two more pieces of equipment implanted in his body. Not simple.   While one doctor thought discharge was simple and Archer could just go home, it was suggested to us to look at a LTACH, which is a Long Term Acute Care Hospital. But that didn’t feel right. Archer would be in a facility with no rehab, really just a holding place, waiting to see if his lungs/diaphragm would strengthen, waiting for healing, waiting, no rehab.   While we have been accepting of the agony of slow incremental steps, going to an LTACH was not what we wanted. That’s the crazy thing: Archer is doing remarkably well. But it’s the remarkably well, given his issues that is the conundrum. Shepherd said he was on the bubble as to whether they thought they would see any more physical improvement with his C4 level, with I suppose is more C3 for his diaphragm.   The doubled bladed sword though is that Archer has met goals for his level of injury. We should be celebrating. That sounds like something to celebrate. But in rehab medical speak, it means, they’ve done all they think they can do, at least for now. Plateaued. Plateaued. I don’t really like that word.   When I talked with his pulmonologist yesterday about whether we should try for more rehab time for his lungs, he appeared deflated. A funny word for a pulmonologist. He said, I saw Archer myself doing the puff vital capacity test. It was not for lack of effort. He was trying very hard. His body is just not there.   There is a quality of witness I felt. Witness. You know what I mean. Where someone doesn’t have to agree with or disagree with or even participate. But they are there to witness the truth of something. My poor lionhearted boy. No matter how hard you might will a rock to move across a table, it isn’t happening. Or might it yet?   We sense a certain melancholic change in Archer as well. Pete noted it too. I don’t think he’s given up, but there’s a withdrawal, a bit of an edginess. It’s neither fun nor funny. It’s not smiley. Reality is setting in in a new way and we have to guard against a form of complacency that seems to be panting outside the door so to speak. The Archer’s Army team need fighters and protectors on the outside who can make rehab and practice and all those opportunities possible. The Arch Angels can work on assisting with his fortitude and inner strength on the inside.   This feels like another turning point.   So, we’ve been scrambling and trying to figure out the best plan for Arch. We think we have it by returning to Baltimore and going in patient to Kennedy Krieger with lesser intense rehab until Archer is strong enough to enter an outpatient setting. . It’s an interesting no mans land predicament. Not sick enough for ICU, not healthy enough for continued rehab at the next level. Tired, worn out and inexsuflated again. That would make a good country western song don’t you think? I can hear it now. Maybe Steve Martel and musician friends at McDonogh could write that song… Not funny. Well they wrote a very lovely song for Archer already, very talented and loving. But honestly, I’m looking for the humor in this for some form of relief, even if it’s a bit off beat.   Humor and comic relief. It crops up here and there. Like when one of the new techs in his room was commenting on two gorgeous 8×10 photos of Cape May gifted to Archer from a local photographer, member of the Beach Club where Archer was working. Of the many sent to him taken of Cape May, he chose a photo of the Beach Club itself and a photo of the seagulls in flight over the surf on the sand on the Beach Club’s beach. They are on the wall in front of his bed where he can see them, along with Pete’s Archer Strong graffiti, a young coed’s Don’t Give Up, Archer! and a cross with Jesus. We were talking with the tech and telling her how much we loved Cape May. As I was promising Archer that we’d get back to Cape May and I turned to the tech and said Archer loves the beach and the ocean. Archer’s mouth curled to the side as you how he does sometimes when talks and he said, as he kinda bowed his head in a sortof submission like way with eyes getting big as he raised his eyebrows, and said, I might love her, but she didn’t love me back. There it is again. Those moments stab.   As of this week, it’s now 4 hours every 4 hours of the inexsuflator, whether he thinks he needs it or not, with saline and biocarbonate treathments. Hard core last ditch effort on weaning. He has profuse sweating all day long, but especially at night which have us back to up all night again just wiping off his face and back of neck and shoulders. But it’s not the 5-8 deep lung suctions so that is awesome. Shepherd might think he’s plateaued and maybe he has. But I know that is not quite the picture. It might be the medical view, but wait as they say on NPR, There’s more.   So, here is what just happened re divine inspiration and the holy spirit at work. I hope I am not losing you here. Of course I won’t Be are believers! . You are the ones carrying me and allowing me to still believe. Even though Shepherd told us Archer has essentially plateaued, I know his body has not and God’s power and mercy certainly has not plateaued. Shepherd too in all fairness says that they hope and think it is very possible Archer’s spinal cord will do more healing over the next 8 months and might produce some new impulses in his deltoids of his arm, and if so, we can return for more rehab in their Day Program. I agree with them and know that will happen. But I know something else that they may not and I believe something else that they may not.   They may believe this too, but it is hard for some to hold out a belief in something that is not explained by science. What I know as Archer’s mother, delusional and difficult as I am sure I can be as a relational advocate, is that he will heal but more importantly, he will have a Creative Miracle. He needs all we can give him to keep up his hope. We have to work in and of this world to allow the mystery of God’s world to be revealed. We cannot have Archer get depressed or stop trying or feel the despair of his current situation. I know, I just know and believe, and I think you do too, that he will have complete restoration.   That will be the Creative Miracle. Complete restoration. God’s time, yes. Will it be dramatic? Yes it will be. Our job is to believe and pray in unity for this Creative Miracle. There is everything to gain and nothing to lose in doing so. Archer is still alive because of your prayers. He believes too, but his body is thin and wearied.   Now, you might find me a bit lunatic, I own that part. I imagine I probably sound a bit or a lot lunatic believing as I do in a Creative Miracle. I don’t feel lunatic though. I feel quite peaceful actually. I feel accepting of our reality while also believing in the more majestic reality of a miracle. I’m ok with that duality.   I am Ok with our temporal time and the agonizing waiting too. It’s not that agonizing actually when I remind myself what we are preparing for. The unity that you have given us and each other is part of the preparation. The saying of the Creative Miracle at the end of the sports events by the rival teams, fighting hard to win and beat each other, but in the end, being united knowing it was a good game, a helluva good game, but the game is not what was most important. It is the humanity and unity in asking for help with something greater than any of us can humanly provide, something greater than any of us has alone. Something we can request together in unity in intercession. We so need each other.   And it’s the unity you write and tell Archer and me about in your letters and cards of your experiences with children, with your husbands, with your families, with your colleagues. It’s the stories of you young adults who are away in college, sometimes estranged from your parents, and reexamining that and returning to find God’s presence to guide you back into working on a fractured relationship, restored to a feeling of peace of unity. It’s the stories of students who tell Archer that they are working hard in school and on the sports field when they thought it was too hard or they weren’t doing well, and they have turned that around, giving it up for Archer’s pain and struggle and feeling good about it and about themselves. That unity is powerful.   It’s all the stories and letters that begin, Dear Mrs. Senft or Dear Louise, you do not know me but…. I read them all to Archer. He is moved. He nods and closes his eyes and is very contemplative. It’s all the cards from children across the country from pre-schoolers to high schoolers, and notes from their teachers that can move anyone to tears, that sound something like: To my third grade students. There is a boy named Archer Senft. He had a bad accident in the ocean when he dove in and his head hit a sandbar. He is paralyzed now and can’t move. It’s also really hard for him to breathe. Let’s see how we breathe. Put your hands in your lap and just breathe. Now take your right hand and put it in front of your mouth as you breathe. As you feel your breath, that is called your exhale. See how nice and easy it is to feel that. Archer can’t do that. Let’s all be grateful for our breath today, and send that gratitude to Archer so he can heal.   Amazing stories, tailored to young children and so very important for us. We feel the energy of those little hands becoming more aware of their breath and we feel their marveling at God’s majesty. The simple and the divine. United. Living more at ease. Greater well-being in that moment, inspired by you as we inspire each other.   We are all teachers. We all have influence. Each of your stories with your daily gratitude creates well-being. So, it is, through this catastrophic tragedy, we are more united with each other. And, OK, so even if Archer is not restored to breathing with ease or doesn’t experience a Creative Miracle walking and jumping and running and moving freely, I know that what we all are doing is in preparation for a Creative Miracle whether in this lifetime or the next. I also believe that if there is not a Creative Miracle, Archer will create something big and amazing that will better the world. It’s another form of a creative miracle I have said to myself. It pacifies me in a certain way. But I have questioned if I was wavering in my faith, in my belief, by reframing a Creative Miracle for my own coping mechanism. Either way, it is good.   But the most curious thing happened Sunday.   Knowing Pete and Megan were coming this weekend to Shepherd, Billy put his foot down and told me I had to take advantage of that and leave to rest. He was right. The last almost two weeks have about undone me at Shepherd plus I pulled three all nighters doing work for clients trying to keep it all together. So, knowing Archer would have good coverage, we hatched a plan for me to have time alone, to sleep, Saturday evening to Monday at 4am, when I would take them back to the airport. It sounded glorious on one hand thinking of being in a bed and putting my phone on silent. But an interesting thing happened. Before I left Archer’s room, I was cleaning it up and I picked up a book, Jesus Calling, that had been sent to me as a gift, a lovely gift. I read the entry for Saturday. It was as if the pages were talking to me, you know that feeling, like you are being seen and understood in a deep way. The power of the words in that book for those who also read it is likely similar, like the words are written just for you. They are. I think it speaks to us on those days when we are most weary, most angst’d, more down. When we are weak. For that is when we need strength the most and when God is always there as the sole source of our strength. Always. So the entry said, Rest.   It noted how important it is that we rest in God. That we rest to hear God. When we rest we can be especially close to God. My imagining going to bed and not waking up for 20 hours shifted. I thought in that moment, Go to bed and wake up and read the cards, read the cards to rest and feel renewed.   It was a distinct plan. I took Archer’s visiting Baltimore friends to Mass, had a lovely dinner with Atlanta angels, went to the apartment that our dear friend from UVA has given to us and crashed. I went to bed on Saturday and I awoke about 7:30am Sunday.. The emails and texts had begun. I knew I would have people to call and plans to make on Archer’s behalf and that the day would be eaten up quickly. I didn’t like that feeling. I wanted to protect this time. I sat quietly. Rest in God.   Reading the cards, yes they renew me. They give me much peace and joy to hear from you. To hear from you with your love and your prayers and how your lives are moved by our lives. Our lives are moved by you.   There are many of your cards that I do not get a chance to read those few days I am away when Billy and I trade, and I usually leave some of the cards from the daily card reading ceremony for the weekend when friends visit giving them a way to connect with Archer as it is a bit awkard for some of the kids I think. But there are more cards of late that I have not read because our days the last few weeks have been slammed. As I think about it, I wonder how it’s possible to cram so much in a day and into the night, and of course all punctuated by 4-6 hours a day of the therapies and the vest shake up treatments and inexsufflaltions.   I know your wondering what in the world is going on since you hadn’t heard from me so I should probably share with you that what’s been so intense is all the negotiation, planning and training. It’s been a flurry of family training and conferences and calls and insurance and insurance coverage or not, finding an attorney for Archer’s claim, making equipment decisions, and house accommodations meetings from afar and flying home for meetings, applications, many applications, meetings with Archer’s pulmonologist on tough decisions, meetings with the nutritionist and calories and while any food is good food, any food is not good food, the ventilator vendor who lives and breaths tubes, the wheel chair seat fitter, the loaner chair, the back up chair, the calls with the other Shepherd families, the shower chair, midwheel drive, front wheel drive, arm attachments, the art teacher and Archer’s first drawing and his subsequent not wanting to draw, the friends and their plane and apartment schedules, the new research that may help Archer, my office, my work, scheduling, being approved in respiratory training, being checked off that we understand Archer’s bladder care, that we can perform his bladder care, that we can perform his nightly bowel care, that we can bathe him, that we can manage and use the manual Hoyer lift, that we know how to strap the harness under Archer and to secure the straps and manage the overhead electrical ceiling lift, that we know the controls and buttons and settings on the ventilator machine, the portable ventilator machine, and how to transfer one to the other so Archer never misses a breath, the inexsofflator and it’s tubing, saline, settings, checks, the daily bedsore inspection, that we can dress Archer without wrenching his shoulder, the tracheotomy wound care, the PEG care, the now suprapubic wound care, the care of the many scars on his body, the stim treatment, the Manual Arm Support and it’s clunky set up and use and Archer’s ability to spear mandarin oranges and a pieces of solid easily separable food, discussions about depression and what is typical, discussions about calories and getting homemade food to him in small amounts as he can tolerate, managing Archer’s vomiting, his nausea, his weight loss, cutting or clamping his feeding tube, evaluating him for GI muscle damage, his profuse face and next and shoulder sweating, cajoling him to talk more with the air removed from his cuff which is very uncomfortable, assembling and helping Archer use the equipment for his future hopeful use of an ipad with a mouth stick, decisions about more surgery for two pace makers for his diapraghm if the heart pace maker is turned off and eventually removed, costs, interfacing with the rehab team, meetings with the case manager, the unit manager, the transition manager, the Medicaid manager, the wc manager, identifying expectations, managing expectations, defining progress, negotiations for time, helping Archer find his voice, and on it goes. And there’s all the home accommodations and generator and plans and drawings, and approval application and design and cost management etc. We haven’t had much time in the last couple weeks to read all the mail except on the weekends when the friends do that.   So, I knew there were many cards that had been opened but that I had not seen. I love your cards, they do provide rest. I have this idea that I will remember each person who has written or sent something lovely. I pray I do. Please know that I do even if you never hear from me as I wish I could with a beautiful hand written thank you note.   I looked around at the stacks of cards and letters. I have been bringing bags of Archer’s mail to the apartment as there is no more room in his room. I wanted to read them. I wasn’t sure which ones I had not read.   I picked up a random pile of cards and I felt peaceful.   As I sat on the sofa, I began to read the already opened cards. I had only read a few when the next card in the stack was unopened. Hmm. Overlooked I thought. But as I continued, there was a stack within the stack of a few unopened cards, all postmarked September 28. I was a bit startled because it had been a month and how terrible that some of your love was not opened.   BEGIN In this small stack was a card from a woman friend who wrote me in longhand a long note about how she had awakened early in the morning the night before at 2am on September 27 and had Archer on her mind, a lot. Her holy hour Sunday morning at 3am is her quiet time with the Lord. She got up, dressed and went to her church where she prayed and lit a candle. In her thoughts and prayers came the name of a friend of hers from the Oblates of the Blessed Virgin Mary, an Order of priests. She continued to pray and listen. Her thoughts went to the newly elected Rector of the Worldwide Order. She knew to be still and to continue to pray as the Blessed Mother and God reveal their intentions to us when we are quiet and listening closely. Her thoughts then went to the founder of the order but she did not know who that was. She then had a thought that she was to write to me. She went home and got on her computer and researched the founder of the order. It is the Ven. Pio Bruno Lanteri. then was shown to her. Ven. Lanteri was a holy man where is there is a movement for him to be beatified and sanctified as a saint, a process approved by Pope John Paul in 1965. That’s the process for Catholic saints. He needs two miracles to be canonized. His cause for sainthood began in 1920 during a world war. His death was August 5, 1830. Archer’s accident was August 5. He was known for his creativity and selflessness, and at the age of 17 he suffered a big life setback due to “a weakening of the chest”. She wrote me all this and said she felt God’s hand was leading her and wanted me to know.   There that envelope and letter had been sitting exactly a month, and there I was setting aside a time and place to rest in God’s presence. Jesus called. It felt very right. The Ven Lanteri is Father Bruno Lanteri. He went on to found the Oblate Order of priests, and thus the connection to her friend in her prayers and thoughts. The Holy Spirit is always at work when we are open.   I went back to the hospital and shared this with Archer. We decided we will pray directly to Fr. Bruno Lanteri for a Creative Miracle as well as directly to God, and to Mary and Jesus. Bruno will be with us. Billy found a photo of this saint, well, technically in the church an almost saint, but we know that holy people and good people are in Heaven, and all who are in Heaven are saints. Many good people you know who have passed on to be with God. They too are saints. The communion of saints. They are all around us. I have known they surround me for years and it is very comforting. They surround you too. You can find comfort in that. So, we have adopted Fr. Bruno. Our friend has had prayer cards cut and they are being distributed if you would like to have one. I will take a picture and add to this update. Isn’t that lovely. With his death and Archer’s death of the life he had, there will be a new creative beginning. I just know there will be. Let’s all together say a prayer to the Venerated Fr. Pio Bruno Lanteri. Dear Bruno, please intercede on behalf of our lionhearted son that he will have a Creative Miracle.   Let’s really believe and go for it and ask that Archer Senft will walk again. And give all the praise and glory to God. Ven. Lanteri too had a special devotion to our Mother Mary. If you’d like a prayer card, I’ll post where you can get one once I know.   A Creative Miracle. The miracle is underway. The stories are remarkable that Archer and I receive almost daily. God is helping us, your prayers are helping us. You are instruments and we are the beneficiaries. And we are in such need.   Here’s another little crazy part about why Fr. Bruno is important for us to adopt and ask for his help. Since August 5, we have been sent relics and been asked to devote our prayers to a particular blessed or beatified person. Four to date to be exact, sent to us by dear friends and a priest. Each of the blessed (or beatified) only need one more miracle to be canonized as a saint. I have felt very conflicted about having to choose one of these almost saints over another and was wondering if we prayed and sought intercession from all four and a Creative Miracle occurred, if all four could get the credit so to speak and thus be canonized as saints, like Mother Theresa and Pope John Paul II. That’s to make you lol, but it’s true. I wondered that.   It might surprise you but over the weeks in Atlantic City, I was really conflicted about this. I wanted to do the right thing for Archer. I prayed about it and decided to let it go. Upon our arrival in Atlanta seven weeks ago, we were visited by an old friend, a Monsignor whom I have traveled with over the years to Lourdes, France, making pilgrimages with the Order of Malta, ironically taking malades, those who are very sick or dying, to bathe and seek healing in the waters underneath the place in the grotto where the Blessed Mother appeared many times, more than 150 years ago, to a poor little girl with it all chronicled by the local constable who tried to have the family thrown out of the town.   Now in Atlanta two months ago, I was flooded with joy when Msgr walked into our cold ICU room and totally surprised me. I forgot he headed a parish in Atlanta. After hugs and hellos, I asked if I could seek his counsel and we set up a time later that week. I wanted to talk with him about such things like canonization of saints and such. He is very wise and kind and I love him very much from prior trips, and good times and prayerful times in France. I was hoping he would confirm that if we prayed to all the beautified whom people told us about and if Archer experienced a miracle, that they all would become saints.   He smiled and said benevolently in his Irish brogue, My dear, Louise, it doesn’t work that way. Yes, I laughed, I figured. You mean no two-fers. Or four-fers? We both laughed a bit. But then he said, There is no need for you for my child to feel the angst you do. Those holy men and women do not need your miracle. They are already saints, in Heaven with God.   I felt this burden lifted and I felt very relieved and peaceful. That made sense to me. Wasn’t that a beautiful thing for him to tell me. Msgr then added, However, of course, if you feel a particular pull to one holy person in particular, then pray to that person. It will be meaningful to you, and of course, all the saints hear your prayers for intercession, just as the Blessed Mother does.   I told him I did not feel a particular pull to any of them and thanked my wise friend and put the matter aside.   I have had a new angst these last two weeks at Shepherd. Archer has been in a no man’s land. He has made such wonderful progress but for all the reasons I shared before, I have felt quite unthethered, unanchored, and I also realized that the days are so slammed with therapy and learning and practicing and negotiating for every step of Archer’s recovery, that I am very tired and I have not set aside the time I need to pray.   I know when I get jumbled and unanchored that it’s often because I have been too busy, and have not had solitude and time to pray.   So, purposeful in a time of turmoil, helped by Pete and Billy and good words, I set aside time to rest, to rest to find God and there was this amazing turn of events. Fr. Bruno we beseech thee. Fr. Bruno feels like a pull and Archer said it was good. Thank you prayer warriors for joining me and for telling me I had to rest too. Please find the place for you to rest and to listen to how God is calling you too. I love you all.   I will close with letting you know Archer and I have added yet another T to the Therapists. Of course, you are all part of FT, Family and Friends Therapy. We have HT and C2CT, that’s cheek to cheek.   Archer’s temperatures still swing and he’s battling a UTI. He gets so cold while he’s spiking a temperature and can’t have even a sheet over him for all the sweating of his upper body and lack of regulation. He asks for hot towels and especially around his sweating face and head. Last week when I returned from Kentucky and it was late and he was having a tough night with the sweating and vomiting and chills, he asked for a warm towel. I went and got one at ICU. I put it around his head, Arab like as he likes, and pressed it around his face. He especially liked my pressing it against his cheeks which also absorbed the perspriation . I leaned over and said, Has anyone told you yet today that they love you? He nodded no. I said, well I love ya! And I missed you. I put my arms awkwardly around his shoulders, As I stood bedside I then held his face in my hands and leaned back to him and rested my cheek against his cheek, with the warm towel between us. He loved it. He just nestled in like we do when we feel safe and cozy. It was a sweet moment. Last night when I returned from Austin, he was awake, not having a good night. He again asked if I’d get a warm towel. He asked me if I would press my cheek against his. It was touching. So he had really liked that. On my tippy toes over his electric hospital bed, I leaned over to press my cheek against his and to hold him close. I realized how good it was for him, for me, for both of us. It was incredibly restorative. As I pulled away after what seemed like a very long time, Archer shook his head no and whispered, Please more. So, until my legs quivered from leaning over and being on my tippy toes for so long, we had cheek to cheek therapy. And that’s what we call it. Cheek to Cheek Therapy, add it to the T’s, C2CT. I hope you will be willing to give Archer a hug when you see him.   Thank you, prayer warriors, Arch’s Angels, Archer’s Army and all good people. Thank you mother Mary for helping me to be a good mother, especially when I stumble and don’t know what to do. Thank you dear Lord Jesus and God for reminding me again of your presence. Your mercy. Your love. We will have a Creative Miracle. Pray for a Creative Miracle. Fr. Bruno, please intercede and have Archer walk again.   Amen. Sending love. arch for post end


October 15, 2015   Family & Friends Update October 13, 2015 DAY 70 Tuesday   When the going gets tough the tough get going.   We’ve been in the trenches the last week to now. I thought we had been in the trenches, but these are new trenches. Archer’s choice of breathing had consequences for his rehab potential. It’s hard to do both apparently. But I say, not for Archer. Not for the Senfts. Not when you do your part and turn over the rest to God. It’s Boot Camp now.   So here a few of the harsh realities: In order for Archer to wean off the vent (medical opinions still varying at Shepherd whether that is even possible during our time here given the level of his injury and lack of innervation to his diaphragm), he needs 5000 calories a day. Just for the work it takes breathing and sucking out the mucous and focus on breath. His feeding tube now provides 1250 calories, so he needs to make up the rest by regular food intake. That’s pretty tough when he can’t swallow well, has a raw throat, and… he still cannot smell which means he still cannot taste. The secondary effects of the ventilator. We could go back to 2200 calories on the feeding tube, but we are also trying to wean Archer’s body off of that to ward off infection of long term PEG so that he can begin to live a bit more normally, or with at least one less tube in his body, and one less drip bag hanging at night. That would be nice. His feeding tube used to be cut at 8am so he also didn’t have much appetite; now it will be cut at 4am hoping that might spur his appetite. But it’s not even so much all of that as it is ongoing nausea. He eats, he feels like he’s throwing up. Not good. He needs calories desperately. He and I weigh about the same now. Not good. He’s 6.2″ And, some foods also produce mucous which he, as you know, is committed to avoiding, like dairy. We found muscle milk and Ensure and other high calorie substitutes but they make him sick. It’s not just lack of appetite. We really need to turn the corner on appetite.   Please pray for us that Archer will gain an appetite and no longer feel nausea. Today w resorted to an an antinausea drug. I told him he could close his eyes and I would force feed him if I had to. Not funny I know but like I said, it’s been a tough week. I was just blown away though by the piece of information that came serendipitously when I was inquiring about Archer’s weight loss and what is expected at this stage as he grows thinner. When she said 5000 calories, I just gasped, 5000 calories?! I knew how hard he has been working, but I see now also what it will take. 5000 calories just for breathing and the work it takes to get the mucous out of his lungs. Count your blessings you don’t have to lose weight that way, but it’s also a learning of how deep belly breathing and really taking in air not only is so very very good for us and calms our flighty spirits and fills our soul, but it also is good for us in burning calories and keeping us alive and fit. It’s interesting isn’t it. All the monks or holy ones you know and yoga instructors and mindfulness teachers and all of us who practice breathwork, we are burning lots of calories.   As an aside, I really believe the world could be changed through breath work. It’s miraculous. Last week was grueling because Archer does not want to give up on his number one priority: to breathe. He shouldn’t have to. Please take in another breath. Give life force to yourself and to the world. It is so good for us all. Send some of that breathwork life force our way for clear breathing. I know the day is coming. Thank you, dear Lord and God, for the amazing capacity we have to breathe and for all the prayer warriors who can pray and breathe at the same time.   I do have a bit of exciting news. In order for Archer to wean off the vent, he needs to blow a consistent 1000 in vital capacity but they’d even take 800 if Archer could blow that consistently. Bummer that he is only able to blow 300 from the 150 he was able to do after his first 30 days in ICU. When he blew 650 in the Shepherd ICU, I thought I would dance a jig, but his pulmonologist later chalked it up to abberation when Archer was not able to do it again. But yesterday, he was back to 600, so we shall see. We are headed in the right direction. Pray for a big volume capacity. Go outside or in the shower and just belt out your favorite poem or tune or expression or cheer and feel the expansiveness of your lungs. Did you know we are hard wired to take in a side breath every few breaths that really expands our lungs. Oh, the glory of our lungs.   But back to Boot Camp….I think it is fair to say that I felt Archer had been a bit cornered by a decision neither he nor I fully comprehended the ramifications of. I was a bit agitated I will admit at what seemed to me like mixed messages we had been given. Many actually. From the first day in ICU, messages of: take it slow, weaning is a slow process, we will go at the pace of Archer’s body, you can only do so much, Archer will lead us on what he needs…. But, in rehab, it’s a totally different mentality and it felt like we missed the speech on that as they say. There was a day last week when it seemed the message was, We wean folks from the vent fast here, and if you don’t wean, we can’t keep you. That may be a bit harsh but I think there was a piece of that and we were not fitting the bill. Archer was too sick.   Another seeming mixed message happend when Archer had the mouth ventilator tube removed and then the trach put in for the new ventilator and then the glorious day when the apparatus in his esophagus was removed, the message in ICU was Hooray! Archer can eat real foods! Give him anything he wants: smoothie, ice cream, whatever! It was celebratory and good. We all cheered and were buoyed by that, remember that lovely day? They said, We’ll still keep him on the feeding tube, but he can eat! Perhaps I was so happy for Archer on that day of reprieve in Shepherd’s ICU that I missed the read between the lines message of, Hooray, Archer, you can now eat and you now need 5000 calories a day to keep up the good fight, buddy. So get to stuffing your face, quickly.   So, I lived a few hours or so early last week with a bad case of the woulda, shoulda, coulda’s. You can probably hear them, eh? Not pretty. I know better than that. I even caught myself. But I was angry at the mixed messages and that I could have had a different program with Archer had I known. Ok, harder than what we had? Maybe not as far as effort goes, but certainly different regarding calories. For every offering of food that he merely took a small bite or sip of, I would have pressed, No, way, Jose. Arch, you need 3000 more calories to get off that vent and you are up to it. I may have sprayed more chloroseptic in his throat or alternated more frequently with Throat Coat tea (a wonderful discovery shared with me by the sound mixer I went to see recently to test my voice as a potential for an audiobook version of our book, who told me that all the singers and narrators he works with drink Throat Coat tea, voila, it’s good for Archer too!). Had I known about the expectation, I may have asked Archer every half an hour what he wanted to eat. I may have set some goals for him of what he had to eat. But no, I was in the dark.   I reminded myself of that time the boys and I ventured to the horse races in Saratoga, on our annual August visit to Uncle Will who trained those sometimes winning horses. We were at the betting counter and Dutch had begged me to bet on his behalf $3 rather than the regular $2 allotment I gave to each of the children for each race. Dutch had really wanted to bet more and I had said, No. As it turns out, his longshot horse won and at the ripe old age of 7, he Dutch had that winning experience of $67 on a $2 bet. As we entered near the winners circle thanks to Uncle Will, Dutch continued to tug at my dress repeatedly saying, Mama, you shoulda let me have $3. I coulda won $100! And on and on. I said, That’s enough Dutch. Just enjoy that we are here with Uncle Will. We are here to have fun etc. But when that did not quell him, Uncle Will crouched down low and got eye level with little Dutch and said, Dutch, take it from me, if you live with the woulda, coulda, shouldas, it’ll kill ya. And so it was. I was doing a woulda, coulda shoulda here at Shepherd and it was a pure waste of good energy.   If you find yourself doing the same thing and beating yourself up over if you had only known, or taking out your anger on someone else and blaming them for not telling you, you might consider telling the other person in a kind way that you didn’t know, wish you had, not sure how you missed it, and ask if you can figure out together how to get it on the right page and move on. That’s exactly what I did. I crossed my fingers I had not alienated the staff. A meeting was then set for this week. Tomorrow. I’ll let you know how it goes. As it turns out, that meeting will be a medical meeting. So I asked if we could have a group meeting to get on the same page about goals and expectations. That will be later in the week.   So, you can now imagine what the rest of last week was like trying to get mega non dairy calories into Archer, wedged between the full time job of home health training that I am now immersed in as I evolve from a support person learning through observation, to a hands on care giver. No free rides here. As it should be. It’s all good in Boot Camp.   I am learning to operate Archer’s many rehab pieces of equipment including the attendant setting on his powerchair, the Hoyer lift mounted on the ceiling and used to raise him up out and back into bed, the way to turn his body with the help of two other care providers to get the Hoyer lift harness under his body, the correct criss-crossing of the straps onto the steel hooks on the large bar, the manual Hoyer lift used to raise him up into his power chair and back into his bed when a ceiling lift is not available such as when outside the building or home, the ventilator tubing and settings, the portable ventilator tubing and settings, the machine and tubes for the vest Archer wears that shakes him to loosen the mucous in his lungs, the inexoflator machine where I throw the right switches at the right intervals at the right pressure settings with the right count of timing to vacuum out his lungs through his trach with forced coughs rather than invading the lungs, the hand operated air bag attached to his trach and pumped at the right pressure and rhythm to match Archer’s capacity breathing and mental needs, and the dreaded but life sustaining deep suction machine with all it’s tubes, special hygiene goves kit, how to put on the double plastic gloves that are germ free and how to keep them that way; touch nothing!, and similar air bag as the back up for when the inexoflator is not enough, etc.   I was and am also learning how to care for Archer’s other basic needs that are more personal and related to hygiene: his daily bathing (90 minutes a morning), and his showering (2 hours a morning, but only 2 times a week since Archer does not perspire below his chest), getting Archer fed which he prefers in his power chair but when the morning takes so long, sometimes it is in bed. When meals are in his power chair, we are now using the MAS (Manual Arm) contraption regularly that I need to set up and get Archer’s arm into as well so that he can practice using it for breakfast, or at least spearing mandarin oranges. It’s getting Archer dressed though which is the trickiest part to make sure the tubes and wires are not messed up, but more importantly to get a Vneck shirt around his arms lifting them no more than a right angle and then getting the slack in the material to go over his trach and head without causing his shoulders to spasm in pain, so I thread them through just like any parent has dressed a baby or taken a shirt off a sleeping toddler. It’s really the same techniques, I just have to go a little slower. But the real tricky part is getting Archer’s compression socks on. They have been custom ordered for him and take awhile to stretch and get around his feet because they are so tight and dense with very very little stretching potential. Think of putting a tight casing around a sleeping bag. And I need to remember to hand wash them every night and lay them out to dry. The black socks for the day are different from the pair of white compression stockings that I need to put on him to get out of bed in the morning and into the special shower chair before his shower, the latter of which is a bit more malleable. Even a few of the staff dread the daily black compression socks as they are bears to get on, but get on we must. And we do. When I don’t think my hands are strong enough to stretch and pull them on, I remind myself of how grateful I am to have my hands to put these socks on my dear son. And I remind myself of the effort it is taking Archer to breathe even with the help of the vent. My Lord, it takes my breath away again to just imagine needing that many calories more than the feeding tube just to breathe and cough up the gunk in his system.   Let’s all take a big huge breath. Just take it. Right now. And whoooo, push it all out. It feels so darn good. Do it again. Whooo, push it all out. Now, look at your hands. Marvel at your hands. Spread out your fingers. Turn your hands palm side up. They are so beautiful. Move your wrists. Now, wiggle your fingers. Notice how easy it is to send a simple command to your hands, to your wrists, to your fingers and voila! They move. Notice how easy it is to send a simple command to your nose, to your mouth, to your lungs, to your diaphragm, to your esophagus, to your chest, to your belly. Marvel at how in a mere nanosecond mental command, your system does what you ask. And it does do because it is fueled in part by the breath. It takes a deep breath which calls upon many many different organs and parts of the body to move in sync. And that movement refreshes you. And you don’t even know how it all works. Nor do I. It is a miracle this body of ours.   It is hard to imagine how any doctor, physicist, scientist of any variety who studies the body could not be in constant awe of the body and believe in God and his majesty and power. And believe deeply. That alone would keep us all humble. Our spinal cord is packed with thousands and thousands of different electrical wires going places and firing and regulating us every nanosecond of the day. It is a miracle the way that we move and breathe and think and go about our day. Truly a miracle as the human body is to this day a true mystery for any scientist since no one or multiple someones are yet able to explain all aspects of the human body and how it works. And thus no one really knows its potential. No one. It is very humbling. It is awe inspiring to me. The body is the temple for the Creative Miracle.   I have been thinking a lot about this too. You are like each of the fibers of Archer’s spinal cord, being connected in ways we are not even fully aware of. Each one of these fibers braided together in some divine way creates a super highway, the spinal cord. Each doing something different but all necessary, all one body. You are the body for the Creative Miracle.   In the midst of these packed exhausting days, I have these moments where I really see the miracle. I envision a different kind of mucous, a very thin white lacey mucous in Archer’s spinal cord active and weaving connections in ways we can’t see or even imagine. It’s very beautiful, milky white. I know, I know. You are saying, What in the world is she saying? Mucous… beautiful? Yes, mucous. I own fully that I have this love hate relationship with Archer’s mucous production. But truly just like so many other aspects of this journey, that which Archer battles is also what keeps him alive, and it may be the very stuff that helps foster the Creative Miracle . So this is my latest thinking informed by a sort of wise knowing as if from a sage. I hold to a divine belief that Archer’s mucous production is also part of his healing. Yes, in a really weird way, I think it is part of the mystery of what the body is doing right now. While it is baffling Shepherd and causing frustration with the calories they would like to use for arm therapy, I think the rate of its production is in direct proportion to the milky white connections being made in his spinal cord as we speak, certainly when he is at rest.   I might liken it to morning sickness. For any pregnant mom who has had morning sickness, ah the dreaded morning sickness that you may have begged your body to have go away. I recall I would have it terribly with all five of my babies, and not just in the morning, but different times of the day as well, and it went on for a couple months with each. I remember clearly feeling this strange comfort, amidst the discomfort and awful feeling that you are about to wretch, that it was good, my baby was very alive. It was a comforting reminder of the life I carried. I so much loved being pregnant, every time from my 20’s into my 40’s. I really did. The honor and mystery that I could carry life in my womb. So, that belief then that morning sickness was life force is similar to the belief now that in some way Archer’s mucous production is life force as well. So, Archer is the vessel for carrying new life in his spinal cord.   So the mucous is necessary. Like morning sickness, we know it will also pass. And we want it to. And we don’t want to succumb to it and have it get the better of us. We couldn’t just stop eating when we had morning sickness; no we had a higher purpose and that was to nurture a growing baby inside our womb. Just like Archer now, we can’t and won’t succumb to the mucous, and let it build up into plugs, we have a higher purpose to attend to: to breathe and then rehab.The production itself is serving a purpose and we just have to get those plugs out.   And get the plugs out we did. Here is what happened.   I became painfully aware that Archer has to maximize every day that he has at Shepherd and the slow weaning was holding him back. Everyone had thought it would be sequential, and I suppose it still is but Shepherd’s doctor wants our focus on the rehab. I asked Archer what his goals were. He articulated to me his goals in this order: 1. To breathe without the vent 2. To have use of his arms, his wrists. 3. To reduce his use of pain medication.   He has been very stoic. By nature Archer is not a big man on campus personality. He is more like the guy most people know not because he is everywhere gladhanding but because he is hanging out and is kind and smart and funny. He has always been loved by his teachers because he is smart and engaged and a life long learner and can be counted on for helping others. He’s a pretty straight shooter. There’s very little BS about Arch. And so it is with this recovery. If he doesn’t have something to say, he doesn’t.   I wanted to know if perhaps he might be depressed. Who wouldn’t be. Billy and I think that one of our chief jobs is to watch carefully for this. I asked Archer if he’d want to consult with a physiatrist. I promised him I’d get him a good one, not someone who would just throw him on meds but someone who had experience with other adolescents as quadriplegics (pretty narrow study really when there are only so many quads thank God a year). He said, Maybe but not now. Interesting. I asked his main doctor and she was surprised I asked. She said, Oh no, what you are seeing is common. I mean, she continued, he’s only 17 and his whole life has been taken from him. How would you feel if you were in a body that didn’t work and you were 17? My first reaction to this was relief. Up to that point, most of the other patients she referred to were older either in college or working. The experience of a 16 just turned 17 year old is vastly different from a 19 year old or a 24 year old. It was the first I had ever heard from her that she had compassion for the experience itself and for his age. My other reaction, more secondary, was even more compassion for Archer. Whatever it takes to help him we will. And, his whole life as we knew it might be gone. Maybe maybe not. But he has a whole new life ahead of him. I really really believe that. Please believe that with me. This is where an Our Father is really helpful. Thy Kingdom Come, Thy Will Be Done, on Earth as it is in Heaven.   That said, it’s ok for you and for me to talk realistically. After all, we have to live in this world too. Our doctor’s world. She said last week that given Archer’s status and what he could do and not do, that he might not have what it takes for the rehab desired. What? Did I hear that correctly? Archer might not have what it takes? Woah. That took some discernment for me. I was flooded with many emotions. What was she talking about?   I decided after some spinning that I wanted to see the angel that was disguised as a doctor messenger who questioned if Archer could do what they wanted to do at Shepherd. Shepherd weans patients early from the vent so they can focus on other rehab. On good inside information, I knew that they send away patients they cannot wean. I felt our future was precarious. And so much of it was out of Archer’s control. The level of his injury. But I wanted to find something in what she said that might be in our control. When caught between a rock and a hard place, I felt we had everything to lose and nothing to lose. I had to gather myself. I wanted to reframe it as everything to gain.   About the same time of this interaction, I had been in training on the exoflator machine. My teacher, a veteran respiratory therapist was excellent. It was a machine that scared me a bit but one I knew would be a Godsend as it had the capability of clearing Archer’s lungs out much less invasively and more powerfully than the deep suctions that fished around in the pockets of the dark lungs for mucous plugs while the large powerful vacuum of the exoflator would suck it out with Archer’s help, if he could do it. Thus far for two days, every time the exoflator was used, (I like to say to Archer, like Dr. Suess. And now…. the amazing EXOFLATOR….) Archer’s right shoulder was thrown into new pain. It was like having a broken shoulder, and the forced coughing of the exoflator would move the broken right shoulder back and forth sending shooting pain, new pain, more pain into Archer’s back and shoulder and making him nauseous. It was excrutiating for him and Archer had come to refuse it and instead actually asked for the deep suctions. Yes, it’s true.   We had been working on new pain management including a lidocane patch on his right shoulder and the continued Busar patch which was about to expire. I was fully aware of his pain and condition.   But after the conversation about Archer’s status and choice rendering him to a potential fate to be sent to a nursing home facility or such if we didn’t stay at Shepherd, I went into his room and basically said, Archer, as of this moment, it’s Boot Camp. It doesn’t matter the pain in your right shoulder. It doesn’t matter that you are nauseous with the pain and with everything you eat. It doesn’t matter you can’t smell and don’t have an appetite. It doesn’t matter you are still at 6-7 in pain. It doesn’t matter. We are using this exoflator and we are going to get all that f— mucous out of your lungs now. Do you hear me? Do you want to go home where we don’t know what we are doing yet? Do you want to go lie in a bed at another facility? Shepherd is the best chance you’ve got, Arch. It’s been a battle. But we’re in a new war now. We are going to get tough like we never have before. You got it? You hear me? I was crying. Do you hear me?, I said as I raised my voice. He was saying Ok. I said, I love you, Arch. You know I do. It’s you and me and this is our best chance here at Shepherd. You have GOT to dig with every fiber in your being to breathe and not be afraid. We are not leaving here, you hear me? You are going to breathe. I said, I’m getting the respiratory therapist and we are doing the inexoflator. I left to get her. She returned and I turned the machine on, adjusted the valves, checked the pressure gauges, and put on new tubing. I got the air bag contraption and the saline bottle. I positioned myself and quickly took off the vent tube from the trach and put on the bag tube. I got Arch stabilized with a hand rhythm he was ok with, I quickly took off the tube of the bag, squirted in some saline, put the tube of the exoflator on his trach, threw the pressure switch with my right hand to the right and told Archer to breathe, 1-2, and then threw the pressure switch to the left and told him, Cough, Cough, Cough. The mucuous was like a prairie dog coming in and out of his hole, in the tube and sliding back down out of sight. I could see it. It was large. The plug was big. We were going after it. I didn’t let up with the hand air bag, instead I said, Again! And I threw the switches, Breathe!… Cough, cough, cough. I could see more of the mucous and I jiggled the tube on the trach to make more suction and up came this massive yellowish slime, filling the tube a couple inches that is about the diameter of a quarter. I yelled, Again! Archer was writhing in pain but I couldn’t see it or chose not to. We had to get this crap out of him and we would. More mucous came out. I took off the tube and went back to the hand held bag. Archer was furious with me. He yelled silently with no voice, No! I said, Yes! We are doing it again. And we did. Three more times. He was so angry with me. His intensity reminded me of the same awful super frightened out of control hideous expression and contortion he had on his face when the ICU in Atlantic City put blood pressure medicine in his antibiotic drip bag for hours by mistake. But this time was strikingly different emotionally. This time Archer was furious. As I threw the valve switch and said Breathe! And then Cough!, Cough!, Couuuuughhhhh! He was livid and silently screaming at me, I will kill you! He said it again, I will kill you! I looked at him as he was saying ..kill you and I screamed, This is going to save you! Again! Breathe! Cough, Cough, Cough! 2 more times and we had a full eight inches solid of mucous plugs in the large tube. That is a whole raft of the stuff. It was almost merciless on him. Harder than any deep suction yet. I should have taken a picture as that picture would have been worth a zillion words, or perhaps only two: Tough Love. Boot Camp.   We did it.   It was harrowing. It was awful. He was better the next three days. I swear he is going to turn a new corner.   It took a lot out of both of us. But it was necessary. I literally felt like this is what it must be like on battle fields. Our men and women who fight for our freedom and are wounded are such heros.   Later that night, I told Arch I was sorry I had to do that. He said it was ok. I was so relieved. I said, I don’t want to negate my apology but I would do it again. He nodded very serenely and said, I know. I said, You know I love you, Arch, and I only did it because we have to. You have to. It’s time. We are hard workers. We have grit. We can do this. You are not alone.   There was silence.   I said in a voice I was aware was quivering, Arch, you know you are not alone. God is right here with you and all the people praying for you. You must feel that support. Do you? He shook his head yes. I said, You’re going to get better. You are. This is not going to last forever.   With a kind of desperation to convey what I wanted him to understand these words just tripped out of me, You know I hate bodily fluids and blood and snot and all the above, you know that, but if this is what it will take to help you, I swear, I will do whatever it takes. I’ll put my teeth on that trach and suck that f— mucous out of you with my mouth if I have to. I began to cry again.   Archer began to cry too.   I leaned over and kissed his cheek.   He then looked right at me with those soft grey green eyes and mouthed, I know you would, Ma. I said, You know I love you. He mouthed, I love you too.   It was quite a day. That was Monday. And so the week continued. It was rough but we made some new progress.   There is something called a Discharge Date. It’s never really set so far but it looms on the calendar of events here. I can’t fathom what that would look like. But part of the program here also involves wedged into the already packed schedule, going to more lectures on family training and…. going to be fitted for a power chair which is like buying a new car (but even more expensive). There are many to choose from as we entered the wheel chair fitting floor at Shepherd, truly like a car dealership floor. There were maybe 12-15 to look at. All different. They are all customized, built with parts from the US and Canada. We had to ensure a company that had a service center in Maryland too. It was determined that Archer will need a model that has both a sip and puff capability as well as a hand lever as his left arm is truly getting stronger and the splint in his arm can work the lever as he moves his shoulder. That narrowed things; there were only two companies to choose from. Fine with me. Please make this selection process easier. He was measured and asked his preferences and whether one monitor or two, and space for his portable vent etc. When it came time to pick a color, I guessed what Archer would pick. While he loves color and loves to draw with a lot of color, he likes basic black for his equipment. That’s what he wanted for his computer and so it was with his power chair. Matte black it is.   I had to also in a different meeting choose a shower chair which is also specially built for peds and quads. Indeed, it would be impossible for any quadriplegic to ever have a shower without a special shower chair to be lifted into. But oddly, they are not covered by insurance at all. That’s so weird to me. Mental note: We have to find out more about that later as to why and do something about that.   Then there was the Shepherd staff member who is actually a van consultant. He gave us a private presentation. My goodness, what to do, what to do. It’s really amazing to me that 2 months in from one of these injuries, you are asked and expected (it’s certainly not unreasonable but it’s just amazing) to essentially design, engage and project manage your house construction project to accommodate your loved one with ADA requirements and personal preferences that we don’t even know yet but still need to construct for, to buy a new or used customized van or have one built out, to buy a new customized power chair—would you believe power chairs cost $30k to $80k—to meet with ventilator supply companies and then also decide which generator and company to use, to answer the calls of the insurance folks and remain in a limbo status with coverage or no coverage for his insurance claim, preparing to challenge, going through the process of SSI and that paper work, and still be available for all day hands on training and on call 24/7 for Archer. And of course stay in contact and connected with family members and work the regular day job at home. It would not be possible without God. It would not be possible with you.   What would we do and where would we be without the Arch Angels. We are humbled by all your support.   I don’t think I shared with you that about 3 weeks ago, we worked out that Archer will have school. Shepherd seems not to keen on the schooling part now. I understand their point of view that it’s plenty for Archer to just stay focused on rehab as that is hard. Is it ever. Archer is wiped out and falls asleep through dinner. And what I thought could be nightly homework is more like a couple nights a week. His sleeping nights have become longer and better albeit always punctuated by the turnings and occasionally punctuated by the inexoflator. The amazing inexoflator is doing the trick. But I know Shepherd is right to some degree: there’s only so much energy to go around. But you know, the more I really think about that, the more I’m not so sure I completely agree. Energy afterall is infinite. Like love. There’s always enough love to go around. And Archer is energized by learning and drawing.   Just the prospect that we were looking for teachers was energizing for him. While he’s generally not the bouncy type, he is energized as I see the light in his eyes and he talks spontaneously. Yes, it’s also a little tricky to give Archer schooling here since all of his classes are AP, including his drawing course, but where there’s a will, there’s a way. After all, when the going gets tough the tough get going. And we are tough. At least I pray we are.   When we first received the schedule of all the various therapies every day, schooling was not on the schedule, and I must confess I pressed to get school on the schedule as soon as we got over to the rehab side. The school coordinator seemed pleased we were interested; she herself being a former English teacher and she taught an AP course in her past. I recruited her quickly as a teacher for Archer in AP English and she was excited. But it was clearly up to us to create a schooling opportunity. I got the message loud and clear. Archer’s message to me loud and clear was that he wants to graduate with his class. We will make that happen. Even if we lose the better part of a school year, or take a gap semester, or have to cobble together the year with work over the holidays and summer, we will do it. So, we obtained the curricula from his courses at McDonogh and have been hunting down local teachers. Would you believe the most extraordinary thing happened. Of course you would, because we are believers! The former director of the Math department at Emory has volunteered to teach Archer AP Calculus! and the headmaster of Pace High school here in Atlanta, who also teaches AP American Government, has offered to Archer to attend his class, and short of that, that he would videotape his lecture classes for Arch. Incredible. People are so kind. Not sure what we will do about AP Biology and Spanish, still working on that.   So, a few weeks into it, Archer loves his schooling, especially Calculus. It looks like this: Archer sips and puffs his way down the hall in his power chair to the teaching room, an empty white room with a large whiteboard. He has a portable ventilator machine hooked to the back of his chair. A therapist or I follow with the lung suction machine on a rolling table in case he can’t breath because of a plug. Archer parks his chair in the middle of the room in front of the whiteboard. The professor stands in front of the whiteboard with dry erase marker in hand putting up all kinds of formulae on it, and he and Archer go back and forth about problems and so on. It’s a neat sight to behold. Archer weight shifts, and the Professor keeps on teaching.   Archer was given a verbal test in English and he knew every single answer regarding Oedipus. He had watched it at night on a youtube she assigned and he and his teacher had discussed it; it was on to Hamlet; Archer is intense and only has to hear or see something once to remember it by and large. So he did well. I am so happy for him. I think he was pleased when he heard that the McDonogh class was doing Hamlet and would return to Oedipus so he felt he was ahead. Whether he is or not, it was good to see him caring a lot about school. I also know that hard or not, learning is a place of comfort for him and a classroom is where he is also in a comfort zone. We could use a little more of that frankly.   As for art, the art teacher at Shepherd came by last week and she and Archer took to each other right away. He was more animated with her than with anyone I had observed. He was talking about preferences of medium and I showed her some of Archer’s art work I have on my phone. She ordered a stylus for Archer for the OT to place in his MAS and some paper. No idea how that is going to work. But the thought of it is very promising to Archer. It’s hopeful. So, yes these areas take energy and yes he is wiped out at the end of each day and has staccato sleeping all night long from the suctionings or the turnings or the program. But school and art really help Archer overall even if they do take energy. The also give energy. There is a reciprocity there, right? Think of something you care about and the energy you put into it. It might be sports or gardening or housework or yard work or running or volunteering. Yes, it takes energy. But it also gives back so much, doesn’t it. And you feel good. That’s what these snippets of classroom time give Archer. Let’s all be committed to learning, whether in a classroom or out in the field of life. Education is so very very important to our well-being. It’s the secular way out of despair I think. The quickest, cheapest and most reliable way out of despair of course is faith in and a relationship with God. But education is the secular version. It’s why I think it is so hard for so many academic types to pray and believe in God. Education and the pursuit of knowledge has replaced God. It is God who gave us our intellect. I don’t want to ever lose sight of that. So, thank you, Lord for our intellect. Education is the means not the end. God is the Alpha and the Omega.   Another of the persons Shepherd sent was an ADA teacher to us. Archer was quizzed on parking spaces and public access and what to expect, what is legally required and what is not legally required. It was interesting. As the lesson was being taught to Archer, I felt this wave of sadness come over me. I get them often when I leave Shepherd to go to the condo and take a shower and I see young people walking or biking and I think of how much Archer loved to bike. My last encounter with my sweet boy was in the morning of August 5, when he sped off on his red Fat Tire bike Pete had won at a bar give away in College Park for a day of work cooking at the Beach Club. Arch loved that bike. But as for this particular wave of sadness I was having as I listened to the ADA overview, my sadness was related to times with friends.   For me, with friends around the country and world because of my work, there is nothing so sweet than to spend time in the home of my friends when traveling. You get the full sense of someone when you are with them in their home it seems to me. I realized that it is highly unlikely that Archer will be able to spend time at most of the homes of his friends. They won’t have houses to accommodate his power chair. Heck, we are having the dickens of a time figuring out how to make accommodations to our own house. I now know that most houses, unless they have no more than three inches lip or absolutely zero steps and ledges, will not be places Archer will be able to go. Isn’t that a heartbreak on top of it all? Sure, there is school and public places like government buildings, but by and large, Archer’s experiences at the homes of friends will be vastly limited. That fact hit me like a ton of bricks because home is so important. That wave now almost two weeks ago influenced Billy and me a lot in what we hope to create for Arch at our home. If he can’t go there, we will create a space where friends can come to Archer’s house.   The preparations for the new space creations are underway. I flew home Saturday am for moving day. Billy arranged for Archer’s coach to have the McDonogh varsity lax team help us (as an aside we were told his soccer coach has his name and number on the roster for the season, isn’t that awesome and so very very kind. Archer loved that if it’s true). As I walked in our front door from the airport, Billy was telling me it was going to be good and to brace myself for chaos for what he had been working on at home last week. Yes, it was a wreck, like a true moving day in progress with boxes and the rugs overturned and a lot of things staged in groups. At 11am, about 10 strong, healthy, beautiful strapping young men arrived. Archer’s Army were in full force. I just wept at the sight of them. Archer would be one of those boys. They have grown again over the summer. Big boys now. They now look like young men. I loved each and every one of those boys in that moment. Full of promise. Ready to help. And so healthy. So able. It was really lovely to see them, and I was also deeply moved by their vitality and numbers as they stood in our front hall at the ready. Thank you, boys. Thank you Archer’s Army.   They worked hard all day taking furniture from different rooms to a storage facility that another very dear and wonderful Arch Angel arranged for us to use. I was overwhelmed with everyone’s kindness. Every one is so kind. Thank you all for your kindness. You are so kind. Your kindness softens the blows of all of this.   When Dutch and I returned later in the day from his soccer tournament, Archer’s Army was out in our garage carriage house dismantling the large skateboard ramp that Billy and Pete and friends had so lovingly and painstakingly assembled and constructed years ago guided by a complicated set of blueprints Pete downloaded from the internet. Lots of memories in that garage with that huge skate ramp. Almost all good and the very few that were not so good were all growth opportunities for how to deal with teenagers as we navigated that sometimes precarious path. The good memories weren’t even my own personal ones but mine only by extension as a Mom. I know other moms and dads felt the same way and had shared the same good memories by extension evidenced by their asking me if they could take a look at what they referred to as the famous garage when they came over for a back to school cocktail party and such. The garage. it had a reputation and it had a feel. We would trapse down to the carriage house to check it out. It always gave us this amazing feeling of warmth and a place you’d want to be to hang out despite its cold and damp. We’d sit on the large ramp or dangle our legs over the ramp as we perched on the bench seat built in from the drop in part of the skate ramp. Billy’s motto had always been, Better than your basement. The kids had referred to it scandalously as kids like to do to be funny and cool as the gaRAGE. I suppose for a passerby it may have looked a bit wild as Pete was our first artist who took to large canvases and graffitied the whole place, which surely largely influenced Archer as well. The walls were covered with spray paint art, the skate ramp was covered with spray paint art and there wasn’t much else in there but this barn like structure painted with all kinds of pretty cool graffiti and a few good posters on metal. It had been through the chapters of high school and college, a few neighbor interventions for noise and one visit by the police, taken care of with a mediator intervention, but it still served as a gathering place for a few boys or many even after college, the last memory I have now of it of Pete on a sunny afternoon with the barn doors thrown open, with three friends sitting on stools around a spool table playing cards. Those quick flashes were tearing me up. I am just raw.   Here I was so grateful for the help of such strong Angels. And here I was feeling really torn that it was all being broken up and thrown away. I felt like my heart was breaking again. Isn’t that crazy? Why am I so attached to these things?, I asked myself. Up the hill in our house I had that same aching feeling of parting with the wood paneling of our den and the west side of our house will be torn out to create a space for Archer. I felt selfish as I want nothing more than a wonderful space for Arch, a bedroom that he can call his own rather than a bed put into our den, a nice renovated space out back where he can gather with a few friends and that serves as his art studio, which also gives me a place to do work while I care for him at home. I want this for him. But to do that, we say goodbye to a number of other things. As I write, though, and see the words Archer’s place for gathering and art studio, that’s really what the garage was before. Archer will create it anew. It will have a different feel, likely a lot neater and probably with a certain sophisticated feel as that’s the kind of guy Archer is. He is not hapless or reckless and has always liked precision. We shall see. So, my sadness is dissipating even as I write. Thank you. Thank you, God, for giving us these amazingly wonderful people who are sticking with us though this roller coaster.   I am thinking about attachment though. Gosh, it’s another one of those tricky emotional experiences that either serves us well or holds us back. I think of attachment theory, one of my favorites, about how important it is for children to have good attachment that is in place by the time they are three years old. When it is, they can meet the world feeling more secure and confident and return to their caregiver when in need of that embrace and feel restored, safe, connected. Isn’t that what we all want for our children at any stage? Isn’t that what we all want for ourselves? When our children go to pre-school to when they leave the house and venture out to their own apartment and then for many when they move in with someone to be married, attachment is what allows them to be healthy in the world with other people. It’s the beautiful anchoring of attachment that allows that groundedness and that return for connectedness. We all need both.   And I also ponder attachment, more in the way the Buddhists would. That kind of emotional pull to something that is out of balance, that cannot let go. I was feeling some of that with our house and the spaces and rooms we collectively call home, safe and secure and full of love and forgiveness. The physical act of dismantling, breaking them up, even the thought of the splinters and debris created from the breaking apart something that was good, caused me pain. My believing in something bigger though, called Life and How you Handle It, puts that sadness in perspective. We all are grieving the losses, both up close and personal and vicariously from Archer’s injury. So, I don’t want to be attached to the past anymore. I want to live in the present. I want to return to the past only for good memories and for learnings around old material I need to work on. But I do want to return to it from time to time. I don’t want to be afraid of returning, as the past often provides a spring board into the present and future. The past holds the material for reflection and deeper growth. Someday, this journey at Shepherd will be part of the past. What will be our learnings?   I don’t know if there is anything you are attached to that might be holding you back from living fully, but I took a look at a number of things in my life. I really love a particular tree in my back yard, but it drops messy seed pods we call helicopters in the spring and my neighbor doesn’t like it at all. The tree is partly on his property too,. He has wanted me to give him permission to take it down. So, I will let him take it down if he chooses. I have my office building that I love but it’s an asset we have that can help with the Archer expenses, so I will sell it. I have closets of clothes I love, but we will need space for caregivers to help us, I will give those clothes away. It’s kind of like that. Attachment. Non attachment. The fine line of discernment between when attachment provides us with a safe harbor in life, with an anchor that we can pick up and drop down at each port or when it is a drag on our life force. Attachment. Non attachment. I wonder what Archer might be attached to that might be causing him suffering. Please pray for us in this time. Please pray that it will all be alright. When I take a big belly breath and think of mother Mary and ask her for solace and ask God for direction and discernment, I feel the surrounding of all the angels we can’t see and I feel all of you. I really do. And I know, and I say to myself, Of course it will be alright, it’s part of the Creative Miracle.   And that feeling of not being attached and my more alert awareness of it this week is starting to manifest in other ways. We have a couple rope swings in our front yard, one a wooden ladder rope swing that hangs from the tree by our front door and the other a long rope tied to a very high bough in a very tall tree by the street. That one has a single wooden bar like a toggle at the bottom for sitting and it has knots at various intervals for climbing. Countless children have swung on that rope over the years, big and little, and continue to as they pass our house headed to 8 schools within walking distance or headed to the small neighborhood grocery store or the library just two blocks away, alone or with their caregivers. Well, yesterday, two bigger boys that I didn’t recognize were out playing on it and getting a bit boisterous as I watched them from the bay window. I felt the urge to go out and say, Boys, that’s enough now. But as I watched them, they were really having fun. I felt the sting of I remember when Archer would climb up to the highest part of our trees, I mean really really high. He was the biggest climber in our family. It was a stab of Please Lord let Archer be on a swing again. Let him climb. But then a different message in my head about the two boys I didn’t know, They could fall and get hurt. Better stop them. I watched some more and they were just having fun. And then the biggest message of all as I watched one boy begin to shimmy up the rope and the other boy playfully move the wooden toggle back and forth swaying the climbing rope to make it more challenging. Not precarious, not particularly dangerous in that moment. They were having fun. But it could get dangerous. I had this urge, Go out and say something to them. Something terrible could happen. Terrible things happen in split instances. What if the one boy dashed the rope into the tree slamming the climber into it. What if the climber jumped off and hit a car. What if he just fell off laughing but landed on his head on the sidewalk. I was tracking how easy it was for my mind to race into these scenarios.   There it was. A new attachment. I’ve had those flashes of danger before. Certainly, what mom hasn’t. A familiar awareness we know well as moms in actions to protect our toddlers from sharp corners on furniture and our preschoolers from curbs and the traffic and our teenagers from decisions that are damaging to their psyches and their souls. My attempts to manage that awareness of danger have often been softened by a certain freedom I’ve given into believing in my children’s ability to navigate, cognitively assuring myself we will find learnings in any failures let’s just hope and pray they are not too damaging or costly, and emotionally comforting myself that their guardian angels would protect them. I have had those thought patterns for years but they are not as acute as what I experienced watching those two boys on our swing. I realize with Archer’s more catastrophic injury, that I have a new opportunity for discernment. To live and let live or to clench and stop the life flow because of the what if’s.   So many things can happen and cause potential tragedy. In the blink of an eye. And not even doing anything stupid. Just living. Like those two boys on our front swing. Like Archer taking a refreshing dip. Reactions to what life brings us. Discernment. It’s tricky. I don’t want to be attached to the fear of what if. I don’t want my mothering of my other children and my someday grandmothering to be clamped by the what if’s because of our trauma experience with Archer. I want us all to live. I want to support the life force that provides that kind of groundedness where Archer and the rest of us on this journey can meet the world confident and open, mindful and alert, but not held back.   I am aware that this experience of Archer will either transform us or it will eat us alive. In just about every respect. I want to be transformed. What will that change look like?   It will certainly be inspired by you. Archer had two friends come to visit last week, flew to Atlanta just for a Wednesday night. What a lovely treat. What I was so struck by more than anything was their kindness and almost awe of Archer and how Archer is inspiring them. If they only knew the way they and their prayers were inspiring and truly holding Archer up. And that’s how it came about. I said something like that to them and each had his own dear tender story that just tumbled out of their mouths. One began, Mrs. Senft, you know I’m Jewish and well.. my family doesn’t really pray but I’ve been talking with my grandmother about Archer and now she and I together pray for him. It’s nice. Isn’t that the dearest. And Archer’s other friend was saying how he’s not very good in a particular subject at school and he has wanted to give up but he’s not because Archer isn’t. Oh My God, I said to myself. That is exactly what inspires Archer in return. There is this reciprocity of that kind of energy. Those visits are priceless. So tender, real, authentic. We really need them and we need each other.   Thank you for being with Archer and me so far on our journey. You are so generous with your time.   I have been thinking about generosity. I am so overflowing with all your kindnesses. I pray for you in gratitude.I love to say the rosary. I say one for our prayer warriors and angels and Archer’s Army. Your prayers, your cards and letters, your stories which are our favorite and so inspiring, to all that you are doing to help us with food and personal items and our pets and our house and our yard and our business and our lives and the planning and the logistics and the changes, and it’s just so beautiful the love. I was home yesterday and an Angel came by while I was changing the 14 recessed light bulbs that were burned out. I’ve really not been in my home for any length of time since mid July. So the bachelor pad needed 9 loads of laundry and well… a lot of things. This Angel just offered to fold and I said yes. And another Angel made Dutch’s lunches. And another Arch Angel takes care of us dearly with our travel needs and managing the frequent flier points being donated, such acts of generosity have kept all the kids close to Archer and our family in physical connectedness in ways we never could have done. It’s just all so amazing. So miraculous. And the few times I have returned to Baltimore, the Arch Angels have taken care of our yard in ways that took my breath away. It is all so thoughtful. So loving. We are all in this together. We are so the beneficiaries of your love. We love you so very much. Let’s pause a moment and explore what it is like to give and what that feels like, which I pray is good for you as you give so much. But do we think very often of what it is like to receive. It’s really extraordinary. It’s crazy ridiculous but it takes a type of vulnerability to receive, really receive, the gift offered by another. How many times do we say to someone who has offered a kindness to us, Thank you. That is nice. I’m ok, but thanks anyway. I realized with Archer that we might not be ok without your generosity and second, I was curious what held me back from saying Yes?   What held me back when I needed to say yes, I wanted to say yes, but instead I just said, Thanks but no thanks essentially? Pride. A rugged sense of individualism. I can do it myself.   Well, on this journey with Archer, we can’t do it ourselves. We want to be interdependent not independent. We need you and so we are saying yes.   I must say yes. Yes, yes! Good gracious and loving God, you are so good to have these angels doing your work on earth. Whatever the faith, it is through a most sacred mystery that each of you is moved to act to help us, moved to act to help anyone. That act is a miracle unto itself. We are immersed in individualism. It is widely celebrated in our society. We need to be on alert and guard against the pride of individualism. We need to accept others generosity. It makes the other feel good. I learned this in the Order of Malta. How our hearts would soar really when we could carry the malade or their budens for them or help them in any way. The joy was ours in the giving and that it was received. That was a good lesson. It’s the reciprocal thing again. That said, the Senft family does not want to become a burden to any of the Angels and Archer’s Army in any way. We do not expect nor want you to do anything that burdens you. We ask for your continued prayers most of all. Archer Strong is strong because of that which unites us. Love, kindness, forgiveness, prayer and belief.   We are now in high gear because we have to be now turning our sights and energies to the necessary accommodations for Archer at our home. Helped by Archer’s Army and Arch Angels, Billy supervised moving day and I am overseeing the plans for how Archer will get into our home and how we will make a bedroom for him on the first floor, that will accommodate his needs, and all the equipment. It’s really a big wow to think about the amount of storage Arch needs just for medical supplies and linens that he goes through in a day. And how we can mount a Hoyer lift in the ceiling to lift him out of bed. And how to create a roll in shower and bathroom and with space for his power chair and a different shower chair.   Please pray with me that our neighborhood, with all it’s bounty and good friends helping us in this endeavor, approve what is planned as it has taken a lot of creative thinking on the part of our Angel architect and home ADA contractor, since our home was constructed in 1903 and has presented many challenges beginning with how to even get Archer inside. You know, an odd thing happened just an hour or so ago. I was sharing with Archer the planning meetings at home and eliciting his thoughts and thinking about options for his bedroom in particular and he had a few ideas but then he said, Ma, you have my carte blanche to decide. All I need is this bed and if we can afford it a Hoyer lift. And it’d be nice to get into the kitchen. You don’t have to change too much though. I got this really weird feeling like, Right, Archer. We don’t have to change much. Because we are going to have a Creative Miracle. I really felt it.   I just looked at him with the way he said it like he was passing through. I said Archer, you mean like because there will be a Creative Miracle? He shrugged and said, Maybe.   Now, my active mind could find hope in about anything. So I don’t want to get too crazed about it, but I was so struck. He said he liked the den feel of our den and wanted it like that for his room. He said he was fine with any room. The only thing necessary for a room to be a bedroom was a bed. I smiled. Comments like that are very Archerish. He meant it too. He then said very matter of factly, If you can, I just want a good bed, a separate thermostat system and a way to the kitchen.   He really lit up when I shared Billy’s idea to convert the garage as a place to hang out and do art. He liked that very much. I told him it would all be good. He looked at me and said, But it will cost a lot. I said we will figure it out.   I told him that in case it crosses his mind, I wanted him to feel secure in knowing that we would ensure that when and if we lose power in the winter, since we almost always do for varying lengths of time related to snow and big trees, that we will explore a generator. Shepherd has told us we need to have a back up ventilator system since Archer’s life depends on it, and a back up machine only gives him 8 hours of power, so things like a generator become important.   And then there’s the technology, how Archer might be able to open and close doors or cabinets in his room with a button on his ipad operated from a stylus in a sleeve stuck into the splint on his arm or by his eyes or his voice if he can recover that. Many uncertainties as possibilities and I have no idea what most of them are but I will learn and we will explore.   But we have to very soon as our hope will be to be home by the holidays. Then, there’s the issue of space for a couple caregivers I realize we will need to hire to alternate day and night care for Archer helping to turn him every 3 hours at night and helping with the 2-3 hours of morning time needed everyday to just to get him up for the day and do that daily routine. It takes two people just to turn Archer. Just pause and think about your routine every morning. Routines are so comforting. I bet you can get up and get going in an hour, for many less than that. And that probably includes makeup application as well as your morning cup of tea or coffee. I was putting Archer to bed tonight and it was over 90 minutes with the help of a nurse to get him out of his chair, undressed, turned and cushions in the right places to prevent bed sores or skin breakdown, the program. It is so much re time and energy for the most basic of things, I can really see why so many people never get out of bed and just wither away because it takes a lot of effort and hands on to do the basics for them. We have so much to be grateful for. Archer is alive. Billy and I will learn these things. And there is the feeling of the emergence of a new routine for the new normal. It feels very good actually. It’s inching a bit closer to certainty.   We also learned a hard lesson weekend before last that also helped with certainty. Archer thought he could watch Sunday football tilted back in his chair for a few hours, which lulled him to sleep. Neither he nor we thought to weight shift him ourselves as he usually very fastidiously weight shifts himself by sipping on the tube that tilts the chair back for 1 minute. The previous Monday morning when I was learning and doing the shower routine for Archer, I had noticed 3 pretty big pink spots on his ish, at the end of his sacrum under his cheeks. Staff said the location told them he had been in a chair too long without proper weight shifts. The dreaded bed sores. I felt so negligent. We had no idea but of course it makes perfect sense. Shepherd staff wasted no time at all moving into action with every 15 minute weight shifts and 2 hours in the chair and 3 hours in the bed throughout the day for a week and a half! We are still doing that! That’s how serious these beginnings of bed sores are treated. I also noticed a small red spot on the outside of his each of his little toes from his new Under Armour shoes, size 11.5, a size bigger than what he normally wears to account for swelling. But honestly like his height, I swear I wouldn’t be surprised if his feet have grown too. After all, all my boys grow in August. So, no shoes for a week. So, we will need a new pair, size 12 probably wide, like D, anything to avoid any kind of dreaded skin abrasion. Think about your body. Every time it moves, the blood flows. So, if you bruise or cut yourself or wear something too tight, your blood flow restores and heals it. Archer does not have that same blood flow, so he’s at real risk for any beginning abrasion or blister or cut etc.   And that reminds me too. Archer’s perspiration on his face and chest has really been getting worse so much so that it’s another reason the nights are still punctuated as he is drenched and uncomfortable. I have washed his neck collar twice in the last week. Shepherd wants nothing that can lead to skin breakdown, so he has begun taking an anti sweat medication, Propantheline. It’s temporary they say to get him through this time as his body regulates. I wondered if that medication would have helped with menopause hot flashes. Cataplex G from my nutritionist did the trick for me. I asked about natural supplements for Archer but they were not recognized. While Archer’s profuse sweating on his face and chest is very different from flashes of hormonal imbalance, I wonder if this may be another place for influence in the SCI health care field.   Thinking about menopause, I am thinking about Billy. And smiling. What a good man. It’s a funny thing. There is a certain juiciness in missing someone, longing for someone when they are not with you. I laughed and said to Billy recently that I am living in a constant state of longing. It was rich for awhile being here in Atlanta and feeling deeply separated from Billy and my other children knowing how much I loved them collectively, as well as very individually. And then I’d see them and it was wonderful. And then being back in Baltimore and yearning to get back to Archer because I missed him as soon as I stepped off the airplane. And then coming back to Shepherd with him and it was wonderful. My goodness I could tell you some tales of that longing feeling and that pounding in my chest when I separate from someone I love. For instance, I recall like it was yesterday, each time in my hometown of Springfield, Illinois when I would pull out of the driveway watching my Mom wave goodbye to me as I would leave home again to return to UVA when I was in college and I would begin to feel the sting of tears as if I might never see her again and then calm myself that I loved her so much and it was time to go on, and that same feeling when each of my older children went off to college and I watched them walk away so grown up and felt my heart aching so badly that I thought I would die on the spot as I waved bravely with a smile on my face as they rounded a corner into a dorm and then pulled myself together telling myself it was just another rite of passage, or even that same feeling to this day when we travel as a family in two cars and we get separated on the highway and I feel this little anxious surge in my chest that we have been separated and then the joy as my heart leaps when we find each other again 15 or 20 minutes later in traffic and I feel that instant relief of reconnection. It’s interesting to me how that achy almost panicky feeling of loss and separation is oddly like a love elixir as I feel very alive that I have these people in my life I love so much. What a blessing is that. I am regularly drinking from the loving cup on this journey. Aren’t we all so very very blessed to know the taste of that elixir, to have that feeling of missing our kids or our spouses and our parents so very very much and so very very much looking forward to all being together again. Let’s give thanks for those times when we ached that someone left us or we left them but we knew we would see them again Or we trusted that we would. That is faith. Whether in this world or heaven, we will see each other again.   Tomorrow I will learn how to do Archer’s catheter every four hours and his nightly bowel program, which the staff fondly refer to as the program. It’s hard to imagine how to do all this on our own after we leave Shepherd. We will learn.   I know we will not be alone.   Candles lit in grottos and churches around the world. We are not alone. Every flicker of each small flame warms us and together creates a field of greater unity. That you were even thinking of us when you were on your travels is so humbling. That you lit candles in places to which you were returning like where you met your love or were married or had a moment of great joy or clarity, we treasure. We feel it, we really do. You can feel it with me. Close your eyes now and imagine a beautiful row of small candles. Each flame representing one of your intentions. See the colors dancing in the flame and feel the love and hopefulness in your heart. It’s the hopefulness that is itself miraculous. Isn’t it so? Yes, it is, and it’s very real. None of us is alone.   And I ask Mary to wrap her loving arms around Archer. As warm and soft as the shawl an Angel knit for me with Archer Strong on it. As warm and soft as all your letters and your stories. Thank you for continuing to stand strong. It’s been tough this week and last. I asked for a collaborative team meeting and we will have it tomorrow. Please pray for us and for strength and grit that Archer will need to reach for like he never has before for the next number of months here and in Baltimore on this intense rehab journey.   Let’s say the prayer for a Creative Miracle. I also attach in case you did not see it the youtube of the boys from McDonogh and Loyola after a game a couple weeks ago, coming together in unity, in solidarity for Archer and for each other in prayer. If we played and lived like that, even with fierce competition but knowing the competition was fun and never to separate us or make us ugly, it would be an amazing world. That world is right here now. It is not only within reach, it is now. #ARCHERSTRONG-McDonogh vs. Loyola 9/25/15   Prayer for a Creative Miracle:   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, I 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 my 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. I 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 his health. Please fill Archer with your healing power. Cast out all that should not be inside of him. I ask you to mend all that is broken, root out every sickness and disease, open all blocked arteries and veins, restore my 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 his 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 my Lord, Jesus Christ, your Son, who lives and reigns with you and the Holy Spirit, one God, for ever and ever. Amen.   Sending love.


October 5, 2015   Come to the shepherd Family & Friends Update October 3, 2015 DAY 60 Saturday 30 days in Atlantic City Trauma ICU 12 days in Shepherd Acute care ICU 19 days in Shepherd rehab   Where has the time gone? I know it’s been a week plus since I’ve given you a status report. The main update: The deep suctions continue but Archer had an outing! The medical plan may change.   First, the outing. On Friday, Archer and two other paraplegics went to the movies with four Shepherd staff. It took them five hours but they did it! Archer came back feeling good. Thank you Shepherd for Fun Fridays, just for the adolescents and their adolescent friends if they visit. Archer may now go every Friday. No adults allowed. All good.   This respiratory thing is kinda getting us all down though I’d say. Certainly wearing us out– even staff seem wearied. Imagine the effort for Archer.   The severity of his injury is so real and as time elapses even with all the amazing progress, we seem to be stagnating regarding his respiratory.   The part of the past week and this weekend that is the most sobering and that probably holds Archer’s rehab progress back is the ongoing scourge of mucous. The daily and nightly suctions with their stubborn mucous plugs refuse to abate. Even as I returned Thursday, Billy and my brother Will who had come to help Billy both reported a difficult few days. All of our spirits feel a bit low about the ventilator weaning progress. Our goals certainly are tempered. I suspect our game plan here will be altered.   It’s 5:27am now as I write you–we’ve just finished deep suctioning Archer for 43 minutes. The difference now is that it takes three of us no matter what, neither an option nor a luxury, because Archer’s left arm has gotten quite strong (isn’t that wonderful!) but also now more spasmodic especially during the deep suctions, and he doesn’t like that…at all. So, my job of holding his arm down from the involuntary contractions set off by his writhing and straining to cough up the gunk during the suctioning process actually requires both of my hands now as I need to lean on his arm to hold it down due to its growing strength. It’s amazing to me the change in that left arm. That change to me in a mere two weeks is really quite extraordinary. But that strength also brings a wilder and more dangerous situation for Archer during suctionings. During the sessions, the person standing on the left side of his bed, who is either hand squeezing with two hands the large manual oxygen bag or snaking with both hands the long vacuum tube down Archer’s trache into his lungs, is in danger of being involuntarily struck. Indeed, someone could likely get hit hard now. Archer is adamant that I or someone strong hold his left arm down. So, Archer’s initial request during suction sessions that I simply hold his left hand in place has now morphed to a straight jacket grip out of necessity.   And there is another new interesting development that Archer doesn’t like at all as well…. the twitching of his left arm, which can be rather dramatic, moving as it might on its own, even during times of rest. The first time I saw him agitated about this upon my arrival back, I smiled and reminded him, My love, it’s actually good because your body is raring to go and just waiting to do what it wants to do naturally. And it will.   But the fact that he does not like it now brings with it more need for us to be both aware and present to help put his arm back in place when it gets spastic. Upon a little further inquiry with Arch about it, though, I realized it is more than that. He is frustrated and embarrassed. That breaks my heart. With all the other stuff he has to work on, work towards, and deal with, he is now experiencing embarrassment. He said he didn’t like the chicken wing. I had a flash of this boy when I was in grade school being mean and cruel as he taunted some other kid making fun of him as a spaz, with an arm bent at the elbow and a wrist drooping. Why are some kids so mean? Maybe because their Moms didn’t stop them in the act of winding up to be mean. I don’t know. But I knew what Archer meant. Whether people doing or saying things to be funny also have an intention to be mean or not, the effect can still be hurtful. After all, the devil is a funny guy, a clever guy. So, if you happen upon someone who is spinal cord injured at C3-C5, please know there is a tendency for the arm to want to bend at the elbow with the wrists drooping down. True, it’s not a pretty sight. But I was so grateful Archer could tell me where he felt vulnerable. And, while the creative miracle is happening, if you happen to be with Arch when his arm spasms or chicken wings, I believe he would be grateful for your kindness in straightening it out for him. But you can ask him.   It occurs to me though that his embarrassment about this new state of affairs heralds a new opportunity for Archer: self-compassion.   Billy and I are sure that Archer’s stoicism for the past two months has been in large part related to grief as much as to pain. And it’s only been two months. Imagine if you were in a straight jacket let’s say, not able to do anything for yourself, plus you couldn’t talk but your brain and all head functions were still sharp and alive. The hell that must be.   The expression on Archer’s face as his left arm spasmed and he tried with his shoulder to wrench it back in place to no avail was utter disdain. He was disgusted that his body, not only broken and not working as it should, is now doing annoying things that he would never do and that he has no control over, whatsoever. None.   This emotion of embarrassment tinged with disdain is new. Dear Lord, please help me respond in the most loving way I can. I thanked him. I told him I could see how it could be embarrassing, I told him we will just have to educate people and that he was loved and people would understand. But as for feelings of disdain and disgust, I want to guard Archer’s spirit against the ravages of such mean emotions. I think we should all guard our spirits against these actually. If you are feeling disdain towards anyone, let’s provide for each other a safe and loving space for the discharge of the emotional energy that fuels disdain, so it doesn’t get trapped in a cycle of cynicism or a lifetime of future bitterness. Let’s pray for the resolve to be on alert for feelings of disdain and disgust and give them safe harbor quickly where they can be attended to and reemerge as self-compassion.   A little bit of time passed and then I told Archer he can expect these spasms as part of the injury and also as part of the recovery. That we can welcome the spasms, that there is nothing to be ashamed of. And that he is our hero and giving us an example of how not to give up.   I then took the risk and shared my thinking that frustration and anger and embarrassment are often just outward expressions of a much more tender emotion of being afraid. I told him it’s OK to be afraid. It’s human. Fear can save our lives sometimes. But it can also hurt us and hold us back from good things. God wants us to live unafraid. We can breathe easier when we are unafraid.   A most remarkable thing happened. Archer began to shiver. It began in his shoulders. Then his shoulders and chest began to really shiver, and then his lips and face. I felt his forehead and he was not feverish. His shakes were almost uncontrollable. I was not afraid in a weird way. I had this feeling that it was his underlying terror beginning to having an energetic outlet. I told him it was good and not to be afraid and they would subside and that it was ok to shake as long as he needed to shake. I put both my hands on the back of his shoulders as support and let him shake. He shook for some time in silence. Then it lessened and then he was still. He then asked for one of his prayer shawls. (The prayer warriors have sent blankets. We use them all.) I draped it over the front of his chest, and tucked it in as best I could around his neck and shoulders as he sat in his power chair. I was familiar with emotional release like this and was so grateful to my years of somatic training and personal experience. Everything I know is being called upon with this Archer experience. And there is so much I do not know. I was filled with gratitude that Archer had that experience. I was also so grateful for good teachers and knowing what was happening so I did not panic or shut Archer down. Trauma carries trapped physical energy that needs a safe way to be released. I am sure it will not be the last time.   On Thursday I wanted to check to see if we were still on track for the inexaflasor which Archer was promised could be used 10 days ago this Monday which will help with respiratory. Yes, says his pulmonologist. So I see that as good news on the way. And one step closer to no vent, or so I thought. But at the end of the third (not bad) deep suction of the night Thursday, as the respiratory team of 2 located the pockets of packed in mucous in his lungs and Archer worked hard to break it up and expel it, I was encouraging Archer and the staff was too. It sounded something like, Mom, Yes, Arch! You’re doing it! And you’re getting it out! And the tech or nurse on the bag would echo, That’s right, Archer! And I’d say, And your diaphragm is getting stronger, Arch! And they’d echo again, That’s right, Archer! And our chorus would sound like this each time after and before they’d ask Arch if he was ready for them to go down into his lungs again with the suction tube. When he had coughed up the last of the bad boy mucous plugs, at least for then, I said, Arch, you are doing so well, honey. You’re going to get rid of this ventilator! But there was silence from my choir.   I had this sickening feeling that they knew something I did not.   When Archer’s counselor came for her round Friday morning to collect him, the hunch I had was confirmed. First of all, we were a bit discombobulated as I had asked his nurse and tech after a 5:15am suction session if they could be sure to get to Archer earlier that usual since his OT was scheduled at 9am rather than the usual 9:30am. It takes 90 minutes to sponge bath but two hours to do a shower, get dressed, hoyer lifted out of his bed into a power chair, fed, meds by mouth and crushed into his feeding tube line, then air removed from the PEG line etc. And Archer really does not like his showers. It’s not that he needs them so much since he doesn’t perspire below his chest. As for the new task of removing air, it is by the way our most recent discovery made by a very attentive nurse who was problem solving the issue of Archer’s recent ongoing nausea since we believe that is the main reason for his wanting to stay on the feeding tube and not eating as much as he could. The nausea has begun to affect however even his suctions as he refuses the saline during suctions as well. Back to my request for earlier grooming, I was thinking 7am, I wanted to make sure he’d be ready. She said they changed rounds at 6:30am and would be back then. I looked at the clock. We only have an hour and 15 min left to rest, I said to Arch, Let’s make it good.   As it turned out, I awoke with a start, grabbed my phone to check the time and it was 8:25am! It was like oversleeping an exam in college. I raced out to the hallway headed for the nurses’ station. Asking for help with Archer and looking for his nurse. But the shift had changed and I didn’t even know whom to ask for. It didn’t matter. They came quickly and 3-4 folks began to compress a 2 hour process into 1. Frantic! They said they had not gotten the message and were under the impression Archer was to rest. It was confusing to me because on the micro level, I had asked specifically and they were telling me something that was not typical. Just let Archer sleep? Since when? It’s like an Olympic training camp around there. That didn’t make sense to me. Or was is just one of miscues on communication that we have experienced in both facilities related simply to there being so many attendants in different shifts. I was searching for answers as to how it went wrong. And in a bigger meta level, I was asking that if they were going to let Archer sleep in, how did they square that with his missing the first 3 of his 4 scheduled therapies. I was confused. Did they know something I did not? I really felt that that they did or that their notes told them something.   So OT was performed in the room using breakfast as a way to practice with the left arm MAS contraption that I was shown how to operate. We had 20 minutes and Archer was able to spear 3 bites of mandarin orange. I spooned in the rest of his maple syrup brown sugar oatmeal and the session time was up.   OT left and his counselor came in. I was still in my pajamas at that point, kinda funny. So, I stepped into his adjoining bathroom with the roll in shower where his large shower tilt chair resides and slipped on some day clothes and brushed my teeth.   Returning to Archer, his counselor was gently saying to Archer that his left arm was showing some C5 progress but his right was still at C4. And that while they and he both want him to focus on both strengthening his biceps as well as ventilation weaning, it seems that breathing is still the biggest issue and he needs to choose between either vent weaning or muscle strengthening. She went on to say that he only has so many calories to expend in a day. The weaning for his level of injury which is more like C3 is going to take as much effort and rest and time as the healing and strengthening of his arms.   Wow. That was a blow. He had to make a choice. I took it in thinking I knew what Archer’s priority would be. I felt a twinge of conflict. Why can’t we do both for goodness sake? My God, he is working so very very hard. Of course our number one is breathing, but please oh please don’t abandon us on the use of his arms. Please. I sat in silence with my head down to allow them their conversation, an act I do now almost instinctively yet it always takes discipline to stay out of the way of others’ interactions when there is a potential for something important to emerge.   She said to Arch, Back in the ICU, you set a goal of breathing as your number one priority. Do you still feel that way? Archer looked right at her with a very very serious even strange look as I lifted my head to peek at his expression. He nodded with a contorted kind of face, Yes. I so felt that wrenching pain, that choice she was asking was raw. And then he started to say something. I don’t think she saw it. She proceeded and said in reference to his yes, I can see that that was difficult…. She continued, What is the most difficult for you? He replied immediately, The unknown. He continued, Not knowing if I’ll I get my left wrist back.   I wanted to weep on the spot. How our dreams have changed. Yes, my darling, I wanted to say, you will have use of your left hand, you will get your wrist back.   But I too do not know. I wanted to say, You will have use of both your hands, and your legs and your feet, my darling. You will.   But I did not.   His counselor said, Archer, we do know you have changed. We have seen change since you have been here. If there were no change, that would tell us something different. You are changing. You have a good bit of secretions still though. You have a lot of medical issues. It’s a whole lot to deal with… Do you get anxious at all? Archer replied, Sometimes. When? Archer said, When I can’t breathe. She said, Ok, breathing is key then. We will have a medical meeting on Tuesday to lay out what is necessary to wean. It’s important in this process to pick pieces of what we need to do and focus on them. Pay attention to your body because it really is making changes, Archer. It’s no different than when you were really little.   So, we are still praying for breath. And we are also in need of prayers to sustain us through the not knowing.   I believe we will have a Creative Miracle. I do not know what that will look like. Or when. I think I am ok with that. It’ll just be real real hard. In God’s hands, I am prepared for the long haul. But oh how much easier the long haul would be if we just knew. How much more grit could be summoned when the going gets tough(er) if we only knew the promised outcome. The Unknown. He had said it before and here it was again. The worse part of all of this as he sits in a power chair, paralyzed from the top of the chest down, with all the gazillion things he could say about what is the worst, he says The Unknown. He is so very very brave. He keeps going. He keeps fighting. He has not caved.   It will take supernatural strength to not cave under what he has to bear. That is why we need God. Prayer provides the supernatural strength. There is no way even the lionhearted could fight this alone. I hope Archer knows this. I hope he always knows this. And I hope he also knows that alone he will never be. That is the comforting part.   Please pray very intentionally for sustainability through the unknown. For fortitude and not giving up while the unknown takes shape and unfolds. Think of when you have to face the unknown. Let’s do this together. We hold you in our prayers too.   As for comfort, we look to God and Mary and Jesus and the Holy Spirit and the angels and the saints, that’s for sure. In the middle of the night, I am so thankful that a mere shift in my attention to them asking for help always brings me strength. It truly is comforting as there is no way to do this alone. If there is anything large you think you can do on your own, think again. Even if you can, it’s so momentary. We really need God to empower us.   There have been times just in the last couple of nights when Arch clicked for me and I knew he needed a deep suction. Actually as it turned out, he just needed me to straighten his arm two different times, once for a hit of 100% oxygen and another time to pull up his pillow. I felt delirious when I was straightening his left arm for the second time, I was so dog tired. And in trying to make out what Arch wanted in the din of the night as I struggled to read his lips because I was (selfishly) trying to not open my eyes completely so I could preserve the twilight feeling of sleep, I had the thought pass over me, I can’t do this anymore. And then I shifted and thought of Archer. Yes I was tired but it was nothing compared to what he faces.   It changed everything. It was almost like a hug. Like a refreshing glass of water. I felt renewed in strength. He is the one doing the true hard work. He is the one who has to ask for help. The strength it takes to ask for help is really significant. A constant lesson in humility. So, Archer makes it easy really, even when I think I’m about to drop through the floor with exhaustion.   And I find in the middle of the night and certainly during the days that I have these moments where I also feel that our life is very full and abundant. It is. Truly. Archer is alive. It’s been 60 days after that quick dip in the ocean. My God, thank you so much, so very very much that our precious son is alive.   And while we had to manage pain up around 8-9 last night, Archer’s daily pain is manageable for the most part. He’s so wise that he has figured out how to stay ahead of it and just what alternative to drugs modalities work and when to do them. He does still take once a day a very low amount of hydrocodone but all the other times he relies on other things. He honestly directs me re what works. I find alternatives and he then figures them out for him. He is very much in charge of his recovery and is very committed.   Here’s one of the latest examples. The night before last, one of the nurses tried to convince Archer to order anything he wanted to eat since we are concerned about his caloric intake and how to increase that short of stimulant drugs offered to make him hungry which Archer doesn’t want, and that’s our preference as well. We can find other means. More on that later. But when she was saying, Archer, how about a smoothie, ice cream, milkshake? Archer was shaking his head no, no and no. I turned to Arch too and said, C’mon, Arch, really? I know you love smoothies, and all the times we’ve gone to the Smoothie King…. He looked at both of us and very matter of factly but with a tad air of, C’mon, Ma, how could you forget… NO DAIRY. Of course, how could I forget. Our research a couple weeks ago, aided by another local Atlanta angel, on what foods create mucous secretions and which foods to avoid, had dairy on the list of what to avoid. There it was. I told the nurse, I forgot! No dairy. Leave it up to Arch; he’ll keep us in line. She was not aware of the importance of which foods to digest. With that, Archer looked at me and wryly said he’d take another sweet potato. It was funny. God love that kid. And isn’t that so Archer, that disciplined side of him that is so patient and not at all haphazard and also light and funny. The side of him that produces piles of picked crab after the rest of us have finished our picking and on to just beers and onion rings that he will then save to make crab soup the next day for us, that side of him that spends hours on producing those beautiful pencil portraits so well done that on first glance you know exactly who the person is and it is hard to tell the photograph from the portrait that he subsequently gives away, that side of him that has him selecting the right color tie or bowtie to complement a blazer, going around the house in all the closets of his brothers and Dad looking for the just the right color that has us all remarking on his dapper look, that side of him that sketches graffiti designs that each have a theme and are perfectly exacted in their lines and spacings and that make us laugh with their clever message, yes, it occurs to me that that same attention to detail and commitment to do it right and desire to make others happy will hold him in good stead as we continue the battle of respiratory. And a battle it really is.   But back to the pain management for a moment, we rely on a gift from one of Archer’s Baltimore angels who sent a neuromusculature stimulator, both of which Billy and I have been shown how to use by his OT. So the hospital has now certified us, but not the nursing staff, to use it if we choose. And choose we do. Archer is a believer that both work. And that is good enough for us to do anything. I put the EPI stim on Archer three times a day for 30 minutes, and we are working up to 60 minutes. He feels the benefit. I see the benefit in his shoulders as they move more freely without his effort. It’s kinda weird really if you don’t know what I’m talking about. If I put the electrode lead patches on my wrist, for instance, which have wires attached to a machine that administers little electrical impulse shocks, and I begin to turn the voltage up, stopping at a point where I can’t tolerate it anymore, my fingers on my hand will begin to lift and outstretch without my willing them to do so. Like a lotus flower opening in slow motion photography. And they will stay open and outstretched in that position until they fatigue which is time to turn the stim off so as not to actually over do and damage the hand. So the OT does it on Archer’s biceps for his arms, and I do it on his back around his shoulder blades at other times of the day which stimulates the opening and movement of his shoulders which carry so much pain, and if you ask me, carry the pain of his entire body as they are the one part of his body he can feel. The stim is not for pain per se, but I think it actually provides a new lens of hope. Sort of like Hope in a volt. So, I consider it part of his overall pain management program. Hope is a key factor in pain management. I think its status should be elevated in hospitals around the world. It’s actually the bridge we can stand on between the known and the unknown.   Another pain management tool we are using everyday is the TENS, also a gift, thank you, angel. Archer was familiar already with the TENS since the athletic trainer at McDonogh had used it before in the training room. The TENS plus the excrutiating trigger point release procedure that his Doctor had done on him have all benefitted him. I will seek out other methods too and see what works. I am wondering when hospitals might offer such things as these in their standard operating procedure. Just imagine, if most of our physical pain could be managed differently without heavy long term use of narcotics.   Billy and I have been wondering about another aspect of Archer’s pain and how to manage it. It occurs to us that fear of pain may be as much a contributor to the experience of pain as the pain itself. I’ve been thinking about this a lot the last couple of weeks and I have wanted to explore some of this with Archer.   Billy and I have just had this hunch, not rocket science after all, but no one has mentioned it, that in addition to the severity of the neck injury itself, there is probably trauma related to his breathing that compounds the normal panic experience. It’s totally understandable that Archer would not want a minute in a day without someone with him to pull him out as the case may be when he cannot breathe. It’s so understandable. I think just the naming of the potential deeper aspect of trauma might be helpful to acknowledge and honor and do some work with when the time is right and he is ready. When Billy gently broached the subject of fear with him last week, Archer had said thoughtfully, Maybe on a subconscious level.   We all have subconscious things that cause us suffering. Just think of the times when you jump in the dark, maybe related to your going to a Halloween haunted house too early as a child when your nervous system was not mature enough to know the difference in pretend and reality, or maybe related to viewing a scary movie when you were young, again too early, or maybe being given certain foods to eat when your system was too young to metabolize them like wheat or peanuts, or anything that frightened your system that it did not fully metabolize and discharge and it lingers to this day. Little traumas and big traumas. Most of us are resilient, thank God. But nonetheless, trauma is trauma. So, trauma for Archer may be residing most around his breathing it seems to me.   And so I yesterday I seized an opportunity. One of Archer’s other therapists, this time his counselor, entered his room (ironically, all the expert people specializing in Arch’s recovery are referred to as “therapists” but when I hear the word therapist, I think of a mental health professional, most notably a licensed clinical social worker and the like, but in the world of SCI rehab, the mental health professional is not called a therapist but a counselor. I’m sure there is a reason for that but I will have to wait to ask later). She was working with the other medical techs getting Archer ready to go to the counseling session. To give you a glimpse of what they have to do each morning, and what we might have to do each day, to get Archer ready to use his power chair, they had to put in place his portable respiratory system with different tubes and machine attached to the back of his power chair, make sure the stim attached to him had the wires tucked behind, make sure the feed tube in his belly was not going to get caught in anything, make sure the Foley catheter bag is hung and the tubes are not in the way of the wheels, and make sure he is still squared in his chair, and make sure the oxygen bag is in the back of the chair for the tech who has to follow Archer holding the respiratory equipment in case he needs to be suctioned, all the necessary prep to enable Archer to be able to do his part of sipping and puffing and using his head to control buttons behind his ear to motor himself out of the room. All of this happens after the two hours it took to give Arch a shower and meds and breakfast and lifted into his power chair. It’s a lot. It really is. Anyway…   As the techs left, she and we had a private moment. She said to Arch before they took their leave, Hey bud, I hear it continues to be rough with the breathing. Archer nodded. I had that fluttery experience in my chest area that I have learned to pay attention to over the years, that tells me I may need to say something. I’ve felt it at committee meetings and public hearings and have not always acted on it and lived to regret that I did not. I felt it again then. So, I tried to gather my thoughts super quickly around what it was I was fluttery about. There it was. I said to Archer and then to his counselor (C), Arch, I know one of the issues with your breathing is the very real sensation that happens when you cannot breathe. And I know you may or may not want to explore what happened when you were injured… and I’m not asking you to talk about that right at this moment. But I am wondering what C thinks about the linkage, if any, to your respiratory issues and the injury in the water. I carefully refrained from using the word ‘drowning’ and I wanted to be ever so ginger about respecting Archer and his readiness.   His counselor was so adroit and paused and said, Arch, do you remember when you were injured? Archer said, Yes She said, Do you remember taking in water? Archer said, Yes She said, So you know the experience of not breathing. Archer confirmed, Yes. She then said, I want you to know that you cannot not breathe when you are on the vent. And when you’re off the vent, there’s still a reflex. You don’t stop breathing. You don’t breathe every second of the day. You naturally hold your breath. There are only two times when that is not true, one is when you have a water injury.   She waited and moment and then continued, I know you are a swimmer. You know how people have different capacities for holding their breath, some can hold their breath like 45 seconds, some others who practice like surfers can hold their breaths up to like 3 or 4 minutes. Do you know about how long you can hold your breath? Archer without hesitation said, Two minutes and a few seconds. She said, Ok, good to know. Can we talk about that some more? He replied, Yes.   My breath was taken away again. James who rescued Archer from the ocean had said that when he saw Archer floating on top, after he and Davis realized Archer was not messing around with them, it had been about a minute and a half he estimated before he got to Archer and turned him up out of the water. The hideous aspect of Archer’s kind of injury is that upon breaking your neck in a diving accident, you have no reflexes to push your body up to the surface, no feet or legs to kick you back up to the surface, no hands to push the water away to propel you to the surface. No nothing. And he was in the ocean with the waves crashing as well. Archer knew exactly how many seconds he had capacity for.   So, again all our prayer warriors and parents and lovers of life, breathe in a deep wonderful breath of oxygen and feel the life that it gives you. Really oxygenate your entire being. And breathe that oxygen into something that scares you, something that may have traumatized you, and is still lingering in your system which still has a grip on you. See if that breath over time might loosen that stranglehold. As you loosen yours, it will help Archer loosen his. You might notice how you can close your eyes and pay attention to your breath and follow your breath and notice when it is not smooth. See if you can locate where the sensation of the clench is in your body. Attend to it. Care for it. Pray for self-compassion and then allow God’s love for you to flood your being all around the spot that gives you trouble, the place in your body that was holding the trauma. Archer can experience this too vicariously through you as we can create this energy field of healing for each other. I really believe that. Thank you for doing that for yourself, and for him.   As for Archer’s pain, I also believe that it is being relieved as well by kind gestures bringing and offering physical comfort for sure. It sounds silly, but if you travel and ever sleep in a different bed other than your bed at home, which I hope you love by the way and make special as it is a place of essential rest, think of the difference in sleep you have when you stay in a bed, at a hotel let’s say, that has feather pillows versus a bed with a flat lifeless pillow for your head. Not to say one is better than the other for I can assure you with all my travel, I have laid my head on both and been grateful, but from a comfort standpoint….it occurred to me that a really nice soft pillow could benefit Archer rather than the hospital issue.   And so it was, two local angels who don’t even know each other each brought Archer a long king size feather pillow, both of which have made a world of difference around his neck. We stuff a rolled towel on either side underneath the long pillow to provide good support as he rests his head deeply in the softness of the down. He likes that a lot. It was a really simple change that has made a big difference. We are so grateful, so grateful for the angels who are out and about outside our cocoon helping us. Thank you, Comfort angels. And thank you, God, because it is through you that these angels on earth have been so kind. There is no way we could be caring for Archer like we are without the help of all the good people. And no way that you all could keep up your kindness to us without God’s grace. It’s a long haul we know. Thank you for still being there with us. You are true angels on earth. We are so thankful.   And I’ve been thinking about that as you might imagine. How in the world will Billy and I and Archer, and Paula, Pete, Dewey and Dutch ever thank all of you angels. All of you. How will we do that and in the most personalized kind of way that we would like. We probably cannot but until we figure that out, please know that we do. We so truly do give you thanks in our hearts at all times of the day, every day. Each of you, each of your prayers and gifts of love. Do not think for one moment that you are not loved and appreciated. We couldn’t do this journey without you. Your helping us in the many ways that you do, surely that is part of the Divine Plan, what God intends for all of us. I know it is helping the Creative Miracle to manifest. How could it not be so. It is.   I’ll digress a moment to share with you an observation so you can take care of yourself as I have had to slow down and take care of myself. As a mediator very interested in understanding fully the conflict experience, we have three centers of intelligence that are effected by conflict, by trauma. Our mental center, heart center and body center. I’ve seen what the negative emotional energy of conflict can do to people, when it is stuffed or bypassed for years. It has the potential of ripping people apart on the insides and estranging them from others who care about them, but most importantly those emotions when submerged in the system create the greatest fractures in our sense of self. And I believe our self and our contact with our spirit is what is harmed the most. So, I have been thinking that a person like Archer, so healthy in every way, one moment doing what he loved most, cooking and creating, in a place he loved most, the Beach Club in Cape May, and in the next moment being rendered immovable and helpless floating head down in the ocean waves would be at real risk, not so much for having his anger turn inward into self-loathing which I think could also happen but not so much for Archer, for having his grief turn inward into an isolation. Here is Archer, the boy and young man we would fondly call the Renaissance Man, an athlete, a scholar, an artist, a musician, a cook. What do we say to a boy like Archer now. We will listen to what he has to say to us.   I did tell him that I think his injury has brought about different kinds of gifts and he will have to discover them. I promised him they were there. I told him I thought one gift was Hope. And that he was the beacon for my hope.   He looked at me so seriously and then he smiled. I said, You will still do something very great and wonderful someday. Maybe you are doing it now.   Your arm twitching is just a bump on the road of a Creative Miracle. He smiled again. He really looked like himself too. (Well, I bought him a headband for his mane and he looks so much like he usually does during soccer season that it feels like the old Archer as we create the new normal.)   I asked Archer to really think about what he envisions for himself. What does he look like. Is he using his hands? Is he in a wheelchair? Is he on a walker? Is he walking? Running? Is he in a power chair? What does the dream look like?   But this discovery Archer will have to make for himself. And you are all part of it. Your prayers, your gratitude give him hope and his belief in himself and in what is possible gives us hope. The prayers of the prayer warriors and his and our belief and his knowing you have not forgotten him and that you believe in him will guard against those vultures at the door of disgust, disdain, chronic frustration and self-loathing. Self-compassion is so important. These tougher emotions really need compassion. They need acknowledgment and then an invitation or a demand to discharge, kind of like lancing poison from a snakebite, or they will kill you and turn you real mean, away from the person you really are. So I’ve really been thinking a lot about all of you our angels. I have wondered how you are. I have incorporated you into my prayers. I have felt deeply the words of your letters you write. And as it would happen, would you believe, of course you will…last week at daily Mass in Baltimore, of all things, it turns out that one of the days I was in Baltimore was the feast of the Guardian Angels. How perfect was that.   While my own devotional is usually to Mary who intercedes to God and to Jesus, I was reminded of the three Archangels and how we can pray to them to continue to help us. Archangel Michael of course protects us from evil. A very powerful angel. Archangel Gabriel, who visited the blessed mother, tells us God’s intentions for us. A very prophetic angel. And Archangel Raphael is there for us especially when we are sick giving us the life we need in our struggle. A very healing angel. I was thinking about this and as I listened to the words of the homily, it just came to me. Archangels. Arch angels. You are Arch’s angels. You have come to our aid to protect us, to help us discern God’s intentions for us and to care for us in this journey. God’s Archangels are working through you, Arch’s angels. I want to pause and give thanks to that. It’s really true.   Do you feel that? You are true instruments of goodness. I have felt from the beginning, as has Billy, that there must be some divine plan for Archer. We don’t know what it is yet, but it is happening. I believe there is something super natural that is happening, happening through the goodness of each of you. Aren’t we all so blessed to have each other. I hope your goodness to us is shared with others in your life. I have heard from so many of you and I relish those notes about how you too have turned to God in new ways. There is so much good in the world, more good than evil. I feel so blessed to know God, to know there is God who loves us so much.   I hope you feel it like we do that you are as connected to every one in Archer’s Army as we are connected to everyone in Archer’s Army, connected by prayer and wonder and holding the possibility of the creative miracle whatever that may be.   God has intentions for all of us, for you as well as for Archer. Ask Him. I am saying a special prayer to Gabriel to help us discern that. Maybe you will too. The blessed mother always listens as well and intercedes. I love our mother Mary so much. She has held Archer so many nights when I felt I could not alone.   I want to sign off now with another thought I’d like to share. Archer has all these people here who are part of his recovery: OT (Occupational Therapy), PT (Physical Therapy), ST (Speech Therapy), RT (Respiratory Therapy) and others. They are all Therapies. But there is another therapy that has been perhaps the greatest contributor, what I might call FT(Friends and Family Therapy).   Yep, that’s it: FT. I think hospitals and rehab facilities everywhere might consider adding FT to the list of what they recommend for healing and long term strengthening and recovery. How can anyone with a catastrophic injury like this ever fully recover without FT. We are so very very grateful for your prayers, your kindnesses, your texts, your stories, your gifts, your love. In gratitude for FT, let us all say Amen! Amen means I believe. And we are believers that is for sure.   Do not be afraid. I go before you. I hear that beautiful psalm in my head and I search for where it is in my heart where I can feel it and really take it in. Do not be afraid. We will need very kind and expert care when we return home. I guess we always knew that but it’s starkly defined now if this ventilator situation continues. Please please Lord, give Archer’s body the strength to breathe on its own. Please allow that as part of your divine mercy and the Creative Miracle. And please help us to accept whatever reality we face in this moment and not to lose hope. If all of our prayer warriors and Archer’s Army and Arch’s angels could be hopeful today for something they may doubt, please be hopeful. Whatever it is. And feel that hope in your heart. And allow that hope to fill your heart where there is no longer any room for fear. And then send us a little bit of that hopeful feeling. I know we together, you for us and we for you, have the capacity to create a new energy field where God’s angels can do their work on the miracle of the body itself. Let’s pause and feel that hope…and know we are connected. With gratitude, Amen.


September 24, 2015 DAY 51 Thursday Friends & Family Update What a difference a day makes.   OK, let’s see…would you like to hear the good things first? Or the “bumps” in the road, which is a loving framing we are taking from a wise soul we know and love, to refer to the ups and downs we now believe are just part of the way to miraculous healing.   So, of course we want to talk about the awesomest, most excellent amazing things. Ok, here we go, it’s truly amazing and we can thank God for his strength and the strength he is breathing into Archer.   I’ll start with eating. Archer hasn’t been very interested and as I coax him each meal. I then have to relax and tell him I know it will come when his body is ready. Each day he is getting better and better from 1-2 bites of oatmeal for breakfast to 8 bites and from 1-2 bites of sweet potato for dinner to 5-6 so long as buttered and brown sugared. And tonight, he took a couple bites of chicken and one carrot slice to help it go down. This is progress!   The day before yesterday in the afternoon in PT, Archer maneuvered himself through two narrow tables to his gym (pretty skillful driving for a rookie with a sip and puff and a button he activates with his ear!). They positioned a large kidney bean shaped wooden table around Archer and then placed his left arm in a leather sleeve attached to a board on wheels, like a skate board with casters that rolled side ways and all around. Archer began moving his left arm with the strength of his biceps back and forth along this table. It took a lot of effort and grit. He was very determined. It looked like good form for a skilled lax player in fast motion but in this case slow motion warding off a defensive player with that clean fast sweep back and forth of his arm cradling the ball. Archer was good at it right away. It was a great moment.   Then his OT told me she had him singing to the tunes blaring in the gym as she had him playing name that music artist; she said he knew them all. That’s our Arch. I would like to have seen him singing, she may have been exaggerating a bit but we are all so pulling for him to keep up his spirits because he can get low and it scares everyone a bit. I personally find his stoicism a bit ok though as he and I have talked about his conversations with God and I know he and God are working it out. I pray the Creative Miracle prayer over Archer every day and dab holy water from Lourdes on his fingers and toes and massage them telling him it’s love and energy and that I know his body is creating connections every day as we breathe and speak. He always listens very attentively and nods. He is a believer. What a gift that God gives us, the gift of believing. Doesn’t it feel good to believe. It does. It is so hopeful. I think we should really give thanks for our capacity to believe. It’s a concept. What distinguishes us from the animal kingdom, human beings made in the image of God is that we can form concepts. What a gift to be a believer.   And I know I digress a bit but what I am finding most about believing that I like the most, sort of like the best part — the piece d’resistance as my great aunt Tuchie used to say– is that believing allows me to be in this world of reality while also holding true to a greater truth that we just can’t see yet but that I know is possible. It’s like being in two worlds. They do not have to clash. These two worlds have the potential to actually complement each other. It’s like they can be in dialogue with each other with one very earthy and the other holding the mystery. Like soul and spirit. This belief of ours, I don’t know what it will look like this miracle but I do know God is working on it right now. I know the fibers in his body are finding new connections and pathways they did not have before. An earthly intellectual view of that would be of course, the body has this capacity. That’s fine. The body itself is a miracle. Think of your body and all the things it does, many things that are still unexplainable by any brilliant scientist. That is miraculous unto itself. Thank you, God for the miracle of how our bodies have so many parts of workings that are still a mystery to man.   Since our last couple weeks have been so tiring, there is many a day that I tell Archer that his job is to work hard and concentrate on his body, to use God’s gift of intellect that manifests in ancient and modern medicine and new technology, and to have faith. That is Archer’s job. I tell him my job is to love him and encourage that and to help him and find him the best support we can find. I then tell him the rest is up to God. But we have to do our part.   And I thank you again, dear prayer warriors and Archer’s Army, for doing your job so well. You have so willing carried the mantle so valiantly. Praying and not ceasing. It is so good to pray and be close to God. That’s a meaningful job. Just think, everyone can have a meaningful job at any time. Yesterday morning, his PT took place in his room. It was pretty exciting. We sent Dad a video, woo hoo! They wheeled a table up to Archer in his chair, he sipped and puffed to get closer. They then attached an ipad to the edge of the table and presented Archer with a mouthstick. I loved it because the mouth end was wrapped in a rubber hospital hygiene glove and his OT said, I am not putting in an order for you to have a mouth stick because you are not going to need one, you got that? You’re not. I am going to let you BORROW this mouthstick though so you can strengthen your neck muscles. Here’s the game. She went to an app of a bright colored circles/dots on the screen. The object of the game was for Archer to place the stick, being held in his mouth with his teeth and lips, onto a color and drag it so that a line appears to connect it to another same colored dot elsewhere on the screen. The stick mind you is about 16 inches in length and is not light as a feather but has a little weight to it as it’s made of hollow steel. Archer was a pro. He had done this once last week and so he was racing through the levels of challenge 4, then 12 then up to 40. She said, OK, you’re too good for this, let me see you do this. She flipped to another app of the game Traffic. Remember traffic? That cute little game you’d take in the car on long car rides with your children. It’s a small plastic square tray with different colored cars and trucks in it with the little red car somewhere on the board, like a traffic jam with the pieces all locked up like a puzzle. You have the ability to slide them around by moving one to get to the other. The object is to get the red car out. I warned his OT that Archer has been a master of the Rubik’s cube since he was 10 and could figure out any combination in a couple or so minutes. Sure enough, he figured out the traffic game after some grit and determination on how to work the stick to move the cars. I think it was very satisfying to him. Pretty exciting eh?   Oh yeah. And after 90 minutes of those games every other day for a last week and this, we saw the difference today when Archer held his own neck up in the brace when he was lifted out of his chair and back into his bed. He was still scared I think of rupturing it or hurting his neck, even in the stiff collar, but no one spotted for him this time. That’s a big deal for his confidence. So, let’s say Alright! Archer Strong. I want you to recall today or tonight or tomorrow what it feels like when you shift from fear or guardedness to a place of greater confidence. It feels great. It is so freeing. He is on his way, I just know he is.   Yesterday afternoon, Archer’s counselor brought him back to the room early as he was falling asleep in his chair. But there was still amazing good news to report: They detected a trace impulse in Archer’s left elbow muscle (deltoid) that has the potential to make his left wrist move. Very exciting! We celebrated the moment even knowing it may not appear again for awhile, but it was there they told me. They are believers too. That really buoyed Archer.   And then there was this morning with his OT as another very awesome moment. Although we awoke this morning and one of the techs noticed that Archer’s right thigh was slightly larger than his left so we waited for a sonogram to rule out a blood clot and that little blip caused Archer to not have time for breakfast because of other doctor visits we had to have, when he finally went to OT, she took his oatmeal that he refused to eat unless I prepared it for him the way he likes with butter and brown sugar (I know, it’s probably his way of keeping me close and we’ll wean him but it’s like a young child, love and limits has it’s time and place and then was not the time or place). Anyway, she said, Mom, make it his way and then we are leaving and taking it with us. Tell Mom you are going to show her a cool thing when we get back. Sure nuff. When they returned, she had built a contraption for him that any mechanical engineer would be proud of that had a large rubber band for tension and a metal arm that pivoted like a college desk lamp. It was affixed to the chair and in that metal arm was resting Archer’s arm and in the end was stuck a fork. She held up a container of mandarin oranges which Archer likes a lot and he awkwardly managed to get a fork into the container she held and then to his mouth. How about that. It was very very hard to do. He had to concentrate very very hard. His pain was back up to 6 and he promptly fell asleep in his chair. A big day already.   And as for his respiratory, his oxygen need moved from 25 yesterday to 21, the same level you and I breathe. Another big step.   The medical staff continue to enter Archer’s room and love the freshness of the oxygen from the plants and the natural essential oils. We almost always have beautiful music or lively music and still work to create a healing sanctuary. They come in and comment that they don’t want to leave, it’s sweet. So, I was stunned when one of our nurses came on duty this morning after our grueling night and I could smell him as he entered our oxygenated sanctuary. He was a smoker. I felt the flash of judgmental thinking, How could someone in this profession doing this kind of work choose to smoke? It baffled me. No, it rattled me. I found myself again walking that tightrope between judgment and curiosity. I chose to set judgment aside for a moment and be curious, afterall, I could be wrong about his smoking. So, when he returned for a deep suction session and we finished it after three threadings of the tube, I asked, Do you smoke? He got a bit flustered and said, Oh, can you tell? I’m so sorry. I try to wash my hands well. I’m really sorry. I said, No, actually, that’s not why I ask. You just deep suctioned my son and watched him writhe like he’s being electrocuted and heard him pleaing for oxygen. Breath. It is so precious. You just surprise me, that’s all. He said, I know I should quit, I really should. I’m just not motivated enough. I said, What would motivate you? He said, I don’t know. I’ve just smoked for so long. I said, Well, maybe it would be a kindness to yourself, like loving yourself to take care of what is so precious: you have an incredible gift to breathe without constriction. Or maybe it would be a kindness to these quads on vents. Like giving it up for them. Just an idea.   Let’s all breathe again. It never gets old. There is always newness in every breath. If you feel constricted, slow down, relax your shoulders. Really feel that belly breath. Someday I hope Archer feels that deep belly breath. It is a place of deep wisdom.   The volunteer mail staff here also marvels at the many decorations and say they have never seen a person receive such amounts of mail. They say Archer holds the record for the number of packages delivered in one day. No, you all hold the record for the number of well wishes as they come from you. We cherish each and every one. He so looks forward to the mail and to pictures and to the thought of friends coming to visit on the weekends. It might be the main reason why he is not suffering depression at this time. Dear, God, thank you for all the prayer warriors that Archer has not fallen into depression.   Archer is still pretty apprehensive about what can happen and not happen and so it’s hard to leave for any length of time as he wonders where I am. I can’t blame him. It’s a wonderful place here but you are really on your own for eating, dressing and anything personal. That’s good in a way. It’s just like going back to having a young child and discerning the difference in providing love and safety and encouraging independence. My style of parenting probably hasn’t changed all that much, for better or for worse. I will push him to try and I’ll back off when it’s up to him. I will give Archer slack when he gets angry as I told him anger is a good emotion because it lets us know we are alive and care about something, but I tell him what we do with our anger is what matters. Internalizing it is as damaging as hurting somebody.   So, speaking of anger, when I couldn’t understand what he wanted earlier today as he kept mouthing, Yellow! to me, and he was getting quite blustery and red in the face and agitated as I was searching his body for something yellow, he then snapped, My mouth, Dummy! I realized right away it was the gold sip and puff stick on the end of the white coil that operated the forward and backward motion on his chair that had slipped too far from his mouth. He was agitated and mad. I readjusted it quickly as it was a bit of a scene as I had been frantic trying to do or get what he was desperately trying to convey because I thought he was in danger or in some kind of pain.   Then, after he had the piece in his mouth again and was contented, almost like a baby with a pacifier back his mouth (even though I never used pacifiers because of nursing), the similarity was clear about safety and comfort, I said to him, OK, bud, all Ok now? He nodded affirmatively. I then said looking him in the eye, Listen, you are never to call your mother Dummy again. You hear me? That’s unkind and I will not stand for it.   He looked at me and then he nodded. We had an understanding.   We both went about our business. A little while passed, I said, Are we Ok? You know I love you. And he nodded and mouthed, I love you too.     It was like that in our home as they were growing up. I just would not allow the kids to call each other names or to be nasty with each other or unkind and certainly not to their dad or me, regardless of the infraction or perceived infraction or how angry anybody was. I wanted them to respect each other and themselves in the same way I respected myself and them and not settle for anyone treating them poorly or thinking it’s ok.   I thought to myself, was I just too tough on Archer? Was I asking too much just then? Should I have let it slide? I mean, it wasn’t that big of a deal.     I’ve been reflecting on that tonight. I can see how tragedies and setbacks that relegate good people to lives in wheel chairs or, like Archer, to a life as a quad (for now) can really give cause to be frustrated, quite angry, embittered and even to become dare I say, entitled. It seems to me it’s likely these situations happen not only because of a personal choice of how to handle it or not being loved through it and supported but because of caregivers enabling them due to their own feelings of guilt or unworthiness, Why you and not me?, or even thinking it’s just kinder to let someone with a special need get their way or it’s just plain ol easier. So, I imagine out of exhaustion or other not so healthy reasons, caregivers might be tempted to give those they love who have special needs a pass on civility, courtesy, respect of others or even good manners.     If that’s true, I don’t want that to happen to Archer or to us. I want to continue to engender in Archer the same respect he had for himself and for me and for others before August 5. It’s really a self respect that I want him to have. And I think we can hold each other to that standard. Because it seems to me that when we respect ourselves enough and believe, as the woman told the little girl in the movie, The Help, You is kind, You is smart, and You is important, then we have inner respect that makes us strong enough to be counter to our egos and relax into a vulnerability that allows us to find humility where we give respect to another freely. And when we give respect, we feel self-respect and are likely to have the other person respect us in turn. It’s a cycle that builds on itself. Isn’t that a beautiful thing. And I’ve wanted our children to know that, and I hope they do and I think they do. So, why change that now for Archer simply because of this accident.     I think the discernment for me is to ensure that my personalized standard of respect is founded in love of self and love of other, like the Golden Rule. I want for Archer what I would want for myself re his well-being. I don’t want to do anything to Archer that I would not want him to do to me. And so it goes. And I want to instill in Archer a respect for himself enough that he can still respect his mom even under these circumstances when I fumble. Simple really, but can be hard. Respect. I can’t force it. I can’t demand it. But I can request it and I can model it. And when I falter, I can get back up and still love myself and still ask for another try. And that is what I had to revisit when I said to Arch, Are we ok about earlier? And so it was, that is how I reconciled my exchange with Archer. It’s good to have boundaries and feel that clarity.     I am pretty sure that’s what my own Mom would say but she would call it Good manners. She was a devotee of Emily Post and lived by the adage that good manners were always about forbearance of self to provide ease to another person. I was thinking I really wish I could call my mom now and talk with her about all of this but she has dementia/ Alzheimer’s and gets quite upset about Archer’s accident each time she hears something about it as if for the first time, so it’s cruel to talk about it with her. I really miss her. I know she loves Archer very dearly. And I love her so much. But I think it’s the basic self respect and respect for others piece that she showed us with Good manners. Thank you, Mom, for living a life of good manners, always taking the high road, being real, loving others and being kind, being fun, and being the Hostess with the Mostess just like our ancestor Dolley Madison, true, and not fanning the flames of entitlement, gossip or triangling between your friends or your children as I have never ever heard you talking badly about someone else. I can hear you saying Hells bells and cockel shells but never a mean thing about somebody. I am really really grateful. I am especially grateful as an adult. My siblings are absolutely unbelievably selfless in this journey with me and Billy and our children, and we have found deeper connections in our togetherness and shared vulnerabilities, respecting our paths and how we can support each other. Thank you Tripp, Elizabeth, Will and Lillian. I really love you guys, but you know that. I also really love Billy’s siblings and am so grateful.   So, good manners and respect, given freely to someone else, born from strength of self rather than a cowering duty to someone else or a false sense of strength over someone else is a beautiful thing and I think it is something we all yearn for and yearn to give.   Ah yes, I see where I am going with this. So an act that stems from a view that another is pitiful, as in insufficient or inadequate, it seems to me that that is a double weakness of both self and other. So there, I think I worked out what I was reactive to a couple days ago. And, while it wasn’t ok that she said it, I believe she is a good person and I forgive her just as I hope would forgive me if I slighted her somehow. We now have mutual respect, deeper respect because of our dialogue. It’s a beautiful thing. Thank you, Dear God, for beauty and beautiful things.   I wish I could stop and say, So there it is. The last couple days. Awesome! Let’s talk tomorrow. But there is more.   I will tell you that last night Archer had six suctions, 3 of which set off the alarms on his respirator monitor such that the team came to us before I went to them. On two of those occasions, Archer was sleeping out of exhaustion but his body was in respiratory distress two low. And the mucous was thick and deep. I comforted both Archer and myself in saying Hail Marys to myself silently and I told Archer between suctions as he was trying to rest to take in enough oxygen and be ready to get started again, There are people praying right now for you, my darling, right now at this very moment. Feel their love and God’s peace. Rest. And then boom, the balloon bag was removed from his trach and the suction began again and in the next breath I was saying like a football coach as he bounced and writhed, Yes!, Archer! Awesome job. Cough that sucker up. Here it comes. You can do it. Yes! It’s almost out. Isn’t that just the craziest combination. But it’s the way it is.     I am also realizing in the wee hours this morning that I am having to use more and more effort to hold down Archer’s left arm during each suctioning episode. Lord only knows that its perhaps getting stronger with all the exercise during the day but now during the night with all these suctionings. That is progress too that strength.   So another night for us both of maybe 3 or 4 hours of sleep, broken up in 1 hour intervals as the deep suctions episodes happen around 4 or 5 throughout the day, maybe more, and then 9pm, 11:30pm, 1:30am, 2:30am, 5:45am, 6:45am and 7:30am causing the lights to be thrown on and the team to go at it as Archer gasps and writhes. Last night was especially tense because both the alerts on the respiratory were going off: low Vt spontaneous and too low tidal volume at the same time, when usually it’s Archer who awakens unable to breathe and needs a suction as he clicks for me and I get a nurse before the monitor goes off. But the real reason last night was especially delicate was because of what happened the night before.   The day before last, we had three Code Blues. It’s why you didn’t hear from me about the celebrated moments. We’ve been exhausted. Yes, three Code Blues. It was harrowing. Five white coats and blue scrubs from the ICU medical team came rushing through Archer’s door and as they did, I could hear the eerie sound like an evacuation horn going off in the hallway and the repeated announcement like a war camp Code Blue, Code Blue…. Archer? It was weird because we were both just dozing in the late afternoon and it was honestly like storm troopers pushing down the door and storming us. It was his heart racing at 153 bpm and his pace maker rapidly firing as appeared on the monitor in the ICU. He had just had a CPT treatment to shake up the mucous in his lungs. Thank the Lord they still have Archer on telemetry to still be watching him in the ICU unit.   After prodding and looking and talking with Archer, they were mystified and it was tense. They decided to recreate it in four hours believing it was likely an artifact of the leads that were shaken up by the CPT treatments. Archer did not seem phased.   At 8pm, the CPT vest was started again and sure enough the staff came racing in as the alarms were going off and his heart was racing again. Then they stopped the treatment and the EKG would reflect he was back to his normal. I was impressed the way the ICU nurse, our old friend of 14 days, worked with the rehab respiratory therapist on the phone with each other in real time giving info back and forth for the next 30 minutes or so so they could be watching the monitors and also getting real time info from Archer. They had a number of questions about the pace maker and its settings and its parameters relating to Archer’s having runs of SVT which appeared to have AV spikes. And the spikes would cease once treatment was complete or terminated when essentially the switch to the hoses on the machine that blow air into the vest to make it vibrate violently are no longer inflated. What was baffling is that Archer remained a- symptomatic; his vital signs taken afterwards were normal and he felt nothing queer or unusual. Archer and I had the same memory of the pace maker’s parameters as I recalled 50 and he recalled 60 and I knew how the pace maker was wired for the upper ventricle and only the lower as a back up because of those conversations I had had with the surgeon in New Jersey. As an aside, I thought it was noteworthy that Archer had not missed a beat on his memory of details like that when he was in so much pain during those early days in ICU.   I texted the cardiac surgeon in New Jersey to see if there might be confirmation because Atlanticare only sent a scant amount of medical documentation out of the likely reams of pages in digital memory. We had nothing here re documentation of Archer even having a pace maker or even the surgery. I felt both relief and deep gratitude that he texted me back within minutes confirming that Archer indeed has a DDD pacer which is programmed with managed ventricular pacing on, which allows him to pace in the atrium and conduct to the ventricle so he would not pace in the ventricle unless absolutely necessary. Lower rate 60 with hysteresis of 50. He thought the upper rate was either 120 or 130.   So, at the next treatment four hours later at midnight, the rehab nurse took Archer’s pulse the old fashioned way while the respiratory therapist took his pulse and oxygen saturation rate on Archer’s other hand via a finger monitor while the respiratory machine tracked both from the leads during the CPT vest treatment. Archer’s pulse was definitely racing in all 3 methods so the 151-155 on the monitor was an accurate reading. But then Archer would settle back to 112 or thereabouts after the CPT vest treatment and would register absolutely no symptoms of feeling his heart race or discomfort at all during or after the chest shaking treatments. Arch told us he liked them because he benefited from them in their rhythmic every four hour jolts sessions. He was completely calm through all of this, including the team of 4 racing over from ICU having watched his monitors from afar. So, at the end of the last session, the pulmonologist declared the cardiac situation one they would not be worried about, it was an artifact of the vest shake up treatment.   I did worry about all the firings of the pace maker though but they say Archer is young and his heart can withstand that. So that is what was thrown into the mix of yesterday.   As for what got tossed into the evening…arrogance. And it pierces like a sword in the back, or a knife in the neck. Even the committed and good person doctor can be arrogant in a flash. I suppose any of us vested with knowledge that others do not readily posses can fall prey to arrogance. We must be on alert for this power currency so as not to abuse it. I have found in my mediation work over the years with physicians of every stripe and facility that it’s so easy for them to second guess the other and not take responsibility for the fallout which is the doctor using medical jargon and speak that most people can’t understand and gets away with a lot of not having to explain further because it is intimidating. Like batting away a pesky mosquito, but actually contributing to the harm when the insect is carrying disease. So, here I was last night in the second episode with the pulmonologist at hand asking questions about my concern for the firings of the pace maker, wondering if the settings could be changed or turned off and asking how the pace maker might limit the course of treatment for Archer. These are real concerns and I was hoping to have thoughtful answers.   Instead I got, We don’t like pace makers. He never needed it. I’d like to turn it off but you can never take it out. I would have never put one in. He could have been treated with terbutelene for a couple weeks until he didn’t need it anymore.   I was really devastated to hear this. It would have been so much more professional and compassionate to say that he thinks he may be able to get Archer off the pace maker and perhaps could have even experimented with a drug that has a side effect of speeding up the heart and used just through that period. I could have heard that and even possibly have been wistful that we didn’t do that. But to summarily and even smugly say he never needed the pace maker and it now limits what they can do to help Archer and that he “never would have” put in a pace maker was devastating in that moment.   This doctor is on the rehab side. He wasn’t there to watch our lionhearted boy flat line 3 times in cardiac arrest. One for many minutes. He wasn’t there in the dead of the night to watch 6 men beating the back of our child and yelling, demanding, commanding Archer, to wake up! trying to revive him. He wasn’t there in our complete weakness and vulnerability to rely only on God’s grace and the intercession of the blessed mother. All I can think of in this moment as I write to you is that sad beautiful American spiritual lament, Were you there when they crucified my Lord?   And then I am thinking, if it were true what he said about terbutelene, I wish the Spinal Cord Injury professions with their specialties and honed knowledge might collaborate with each other more where trauma docs could exchange wisdom with rehab docs and vice versa. Wouldn’t that be amazing for SCI patients. Wouldn’t that be amazing in general. When I’ve noted this in my mediation work between different departments of physicians, the answer to the question, Have you considered collaboration, sharing knowledge to be truly patient centered and finding the highest safety standards?, the answer is always, Not enough time (and money). It seems to me, though, that the real barrier that prevents such knowledge exchange is… arrogance. And none of us is immune from this form of puffed up pride strutting and masquerading as jargon or knowledge or being passed off as being too busy or too important and not enough time. I know that might sound harsh, but the medical profession is so gifted in their knowledge and it could be used for greater good making more people experience greater well-being, including the physicians themselves, if they were to collaborate more or adopt a collaborative mindset. It could be done through quality dialogue, but that takes humility. The physicians I know who have that quality are amazing. We need more of them.   So, I was still haunted by my concern about the pace maker firing as it did and it didn’t square with me to pass it off as an artifact. Early this morning as the other pulmonologist came by on rounds, he reiterated that they were not going to worry about it, just an artifact. He also explained that Archer as an athlete may have a heart rate at 170 when he is on the field, so that the CPT vest just tricked the body. That was helpful to me and made sense. OK. He turned to leave the room, and I called after him in the early morning light. Dr, I am still concerned about those firings of the pace maker regardless of his age and the ability of his young heart to take it. Is it possible to have a consult with a cardiologist? There have been two who have stopped by, friends of friends from Emory, in the last few weeks and we could call them or I could consult with other cardiologists in Baltimore, or you could call the surgeon who put in the pace maker. I also told him I found it arrogant that his partner summarily dismissed the pace maker and I would like another opinion. He graciously said he would get a consult. It was a good interaction.   About two hours later when rounds had changed, the other pulmonologist came in and honestly had the audacity to say, I have decided we can’t just pass this off to an artifact and I have decided to call in a cardiologist who will be here to do some interrogation of the pacer and so we don’t want your son to move out of bed until that is complete. And, you’re lucky because it’s a cardiologist I would send my own family members to and he will be in the ICU with another patient this morning and can come over here afterwards. I bit my lip, and said, Thank you, I’m glad (the other doctor) followed up on my concern.   As we waited about 90 minutes, the cardiologist from the next door hospital and four white coated physicians and interns trailing him entered plus two women with the Medtronics computer. He introduced himself, asked me a number of questions about Archer and the pace maker and surgeries and length of time and about my concerns.   Before he was about to give me his opinion based on the info provided by me from his inquiry, I said, Before you tell me your views, I would like you to know that I do not take kindly to summary statements that the pace maker should have never been put in, is too late to remove and will interfere with future treatment needed for my son’s recovery. This has already been stated to me. I find such an approach arrogant, not kind, not compassionate, and untruthful. And, it doesn’t aid in the best decision making for understanding what can be done now. So, please think about what you want to say to me and how to say it so we can have a decent dialogue about this.   He nodded and began in a most gracious and informative way. He said he puts in and takes out pacemakers usually within a year but has done so after 15 years, it all depends on the degree the wires get scarred into place on the veins. And if you need to remove the pacer, and the wires won’t pull out, he can use a laser to cut away the tissue. It doesn’t have to be an absolute. It’s probably 1 in 1000 chances that Archer may need the pacer if they change the settings and turn off the rate responsiveness and switch the mode so that it only paces if his heart goes above 160. If Archer has a premature beat they can compensate for it. There is no way in the world he would want to take it out anytime soon even if only 1 in 1000 chance he needs it because of all the other healing he needs to do. I really appreciated this exchange. With that, the two women with the Medtronics case literally programmed Archer’s pace maker bedside with a box placed over the pace maker and the settings changed on the computer screen carried in the blue box.   And I asked the Dr, And if Archer has a Creative Miracle and is running on an athletic field and has a heart beat of 170, then what? The doctor didn’t skip a beat and said, Then we can reprogram the upper track to 210. So, the pace maker is essentially turned off except for extreme situations eliminating RV pacing and is pacing in the upper chamber only.   Something amazing in the middle of all this happened. Literally while awaiting the sonogram for the blood clot in Archer’s leg and also having another CPT vest chest shake up treatment as part of the monitoring for the heart issue with his heart racing… Archer was smiling. He likes the shake up treatment. The therapist said, It’s like a big hug isn’t it? Archer smiled. I laughed and said to Archer, Yep. Like a bone crusher. Like Dad’s bone crushers. The respiratory therapist said to Archer, Your Dad is a big hugger? Archer smiled. I said, Oh, yeah. Archer then mouthed to me, Ma, remember jump hugs? He was very bright and totally lit up. I asked, What was that, Arch? He mouthed again, Jump hugs, remember? and he began in a very animated way to explain to the therapist that he and his brothers one at a time would stand on the wide hallway steps and jump into the arms of Dad, and they’d get bold and go up more steps, further away from Dad and more daring in the jump and Archer would go to the highest, the 4th step and sometimes the 5th and I wouldn’t allow him to go higher and he’d jump and it was like flying into his Dad’s arms. He was so animated and he really smiled and seemed to relish that. Jump Hugs.   And then he said, Ma, remember Group hugs… Yep, we’ve had a lot of those too like major bone crushers as Dad would say, Group Hug! and would gather us all together in one big mash.   Memories can be so sweet. Let’s all think about a fond memory when we were little or when our children were little or when we were grown up and someone hugged us and it was real and tight and big and wonderful. That’s the feeling I want to send to Archer to know that feeling of safety and love that he already knows but that can be recreated in his body. It feels so good doesn’t it. It is such a simple act to hug someone, sometimes it takes humility but is so incredibly restorative.   Something else so wonderful. A lawyer friend emailed me to let me know his Rabbi at synagogue referenced Archer in her sermon. Isn’t that really lovely. It’s like a big group hug. God wants us in a big group hug. We are all in this together.   I’ll close by sharing with you that an exec I have done work with checked in on me and told me she was continuing to send prayers to Archer, me and the rest of my family. I really find these texts so comforting. I don’t need to respond I know because they are the friends and colleagues who don’t expect that because they just know. I am so grateful. She said to let her know if there is anything she could do, as so many of you have so generously offered. Feeling frisky after Archer’s morning PT, I texted her back, Can you deliver us a miracle today? She texted me in return, I’ve been short on those lately but let me look in a few desk drawers and say a few more prayers. I thought that was funny at first, she a Fortune 100 exec. Then it hit me, and I texted her back, That’s where the miracles are found for sure. Always there. Just lost in life’s clutter.   I think that is true. I so believe in miracles and know they are all around me, like each of you, you are a miracle. Your prayers are a miracle. But sometimes we forget or just don’t see them because of getting lost in the desk drawers of stuff or minutia.   So, this is my formal announcement to my family that I’m giving permission in my absence to clear out desk drawers and closets and begin the process of moving things as we begin the preparations for a new physical home space for Archer and the necessary home modifications, graced by angels again who have come forward to help us with planning, space and storage. It is actually hard for me to think of this since our 115 year old house doesn’t lend itself to any elevator and such. While the first floor has brought us so many good and fond memories of gatherings and sharing of knowledge and ideas with friends, and class parties, and gatherings for authors and non profits whose missions we champion and will be Archer’s space for the same activities, I feel the little stab of that potential loss that Archer may not ever (until the miracle) get to the third floor where his bedroom is again and lie in his bed where he has daydreamed and night dreamed and done a lot of art. The same room Paula told me she wrote of in her college essays. Isn’t that silly to feel that kind of sadness over something like a material space, a room. But each room of our home has been a special space, very lived in as there are a lot of us, each room always has a good place to relax and read. He may not see the upstairs again and the first floor may have altered in ways that removes some of the living in space that has brought him joy. You know how it is with a home. The rooms are places where you rest, share ideas and laugh and cry and argue and make up and love and gather to break bread. I want Archer to have all that on the first floor. We need to figure out Hoyer lifts and wide enough entry ways and spaces at tables for him and roll in showers large enough for power chairs. Oh yes, I asked some wise Moms of quad kids about the terminology for electric motorized wheel chairs… they’re called power chairs. I like that.   And speaking of power chairs, Archer has gotten so good at his that they came and reprogrammed it for double speed. Can you imagine that, all these things are programmed by a computer to not go too fast or too slow. So, it’s life in the fast lane now.   I am sending you much love and thanks today. We are preparing for a weekend of visitors to our hospital room and Archer is very much looking forward to this.   Please pray again for a Creative Miracle. It is such a beautiful prayer. And pray for your own family and your children and your home space and your family’s well-being. And as parents our children need us to be strong and also to eat humble pie sometimes, but our children really need us. Count your blessings for your instincts and your intuition. You know that it is God who whispers to you. We just have to listen. I am trying hard to listen. Please pray for me that I can listen fully. Sending love Amen. September 22, 2015   Archer Update September 21, 2015, DAY 48 To Family & Friends   My dear family and friends. I do not know where the time goes. You must be hungry for some news about our lionhearted boy. The rehab days are full. Archer has made incredible progress. We also still toggle between two steps forward and one step back and one step forward and two steps back.   We have much good news to share of the last 7 days. Our good news began when Archer was moved out of ICU to the Adolescent Rehab wing of the fourth floor, one of the reasons we came to Shepherd. A mere 50 yards at best across the hall from the Shepherd ICU but into a different world where the focus is rehab.   It’s been a brave new world for sure. The staff is oriented on the tough work of rehab. And there are accomplishments I can now list that Billy and I wondered and hoped would be so after a full week. So, let’s celebrate that Archer is no longer on morphine, or any narcotics for pain relief. That’s a big deal. He’s not yet pain free but he his pain has subsided and no hard drugs. Let’s all pause for the pain free ways we can move and the ability to have daily joy without resorting to substances. It’s a big deal really. Our bodies don’t want to be in pain. It’s such a good thing when we we feel better. And when we feel better not because of substances. Ok, so Archer still reports daily pain of 5 on a scale of 1-10 and yes, that does make him very stoic as he battles that intensity, but it appears he is as committed as we are to pain reducing alternatives.   Here’s what happened. Last week the medical meeting which his team had with Billy was grueling at one point when Archer’s lead doctor applied acute pressure to trigger points in his shoulders which caused excrutiating pain. She really gouged him Billy said. Poor Billy had to witness that and said it was unbearable. But it has helped in combination with massage, accupressure, neural stimulation and ibuphrophin so that he doesn’t ask for morphine and the other drugs. So, to go from a regular 7-8 to 5 on the pain scale is moving in a good direction for sure.   Next, Archer was not only in a mobile wheel chair, he was driving it with a huff and puff wand in his mouth that he figured out in three days how to do forward, backwards, stop, turn etc. His leaning to the precise has helped him immeasurably in mastering it last week and not bumping into everything in his path. He drives that electric motorized wheel chair very seriously from his room to the gym around the corner and back. It takes a lot of concentration. You know I realize as I write that I still refer to Archer’s mobile wheel chair as Archer’s electric chair. Ugh. I don’t want to call it that! I mean, it is electric and all, but I think mobile might be the right term.   And third, Archer was dressed for the first time in 43 days last week. Yes, be gone hospital gown! Hello sweat pants or lax shorts and a short sleeve button down shirt and t-shirt, although regular T-shirts will have to wait as we tried and it was too painful over his tracheotomy. Today Archer chose a V-neck T-shirt from Target lovingly washed multiple times by a dear Atlanta Mom to make them soft. Thank you to all the Moms who are with us on this journey helping me at every turn in thought, word and deed in Baltimore, Atlanta and other states. I love you all so much. Archer looked downright good. You know, let’s seriously thank God for our washers and dryers and all the countless loads of laundry we have done over our mom years (Dads too who have done the laundry), and how good it is to be in soft clean clothes. It is so so good to be in clean clothes simple as they may be. Thank you, God for that blessing.   The only thing missing from the new attire: Archer’s quick smile. But it will return. We have seen glimmers of his smile as visitors have stopped by and those who engage Archer in real conversation inject an excitement in him and he talks excitedly but also exaggeratedly so we can get what he is mouthing, especially during talks of sports and telling tales about Baltimore. He loves the short video clip from the McDonogh football game, and the Gilman dress down day and a signed football from the coach of Alabama etc. and his texts that we read to him and the scores of games and who did what. Archer loves sports and is very much a boys’ boy in those ways. He also loves to scan pictures that are sent for familiar faces. He really studies them. I want to give thanks for Archer’s Army and your friendship and your love. It means the world to us and it’s very present in our room and shows up daily just when we need it.   And as for food, Archer continues to not be very interested in food; it’s been over a week now. He’ll sip or take 1-2 bites of things but he’s just not interested. Even with his favorite French toast and delicacies brought to him from Jenny’s kitchen and the Buckhead Diner by local Moms taking an interest in his welfare and visiting Baltimore friends, his sense of smell is dulled because of the ventilator tube thus his taste is seriously dulled as well. This appears to have have gotten worse. He also has not had much to eat for a week ever since the mucous secretions in his lungs have increased and he is very tired. As for taste, as I was coaxing him to have some mashed potatoes tonight and some sweet potato with butter and brown sugar, Archer reminded me that he doesn’t have his taste buds on his tongue since that nerve was consumed by the cholesteotoma he had as a younger boy. Ok that is true, but I reminded him that that nerve is rejuvenating itself as we speak and will have repaired itself by the time he enters his 20’s because his body is still in serious growth mode. And that reminded me of a fact about age 17. Archer has a really good chance of nerves being reconnected because his body is working on some of that naturally related to his age. But while we are waiting, it is a double whammy for him re the lack of ability to taste right now.   I really appreciated today when his nurse told him in no uncertain terms that it doesn’t matter if he can’t taste, he had to eat if he wanted to get off this ventilator. I also really appreciated when she said, Look, your whole body is focused on one thing and one thing only: breathing. But you have to also focus on eating so you can also do the PT so you can go home. She also told him they will no longer crush up his meds into his feeding tube and that he will begin to take them orally, another big deal, so he can be weaned off his feeding tube. That will be as much a psychological big deal as a physical big deal.   So, even with the transition from the ICU to Rehab, Archer still has many medical issues, mainly his daily fight to breathe. While Shepherd is expert at taking Spinal Cord Injured people and helping to wean them off the vent, it is not the average patient here that is on the vent or on the vent so long.   I cannot tell you how painful these are to watch and watch I must as Archer won’t allow the techs to start even as he gasps for air until he knows I am in place on his left side at the ready to hold down his involuntary spasmodic left arm to protect it from falling or hitting something during the sessions. As he struggles gagging, we often lock eyes and together concentrate, mine in imagination and his with all his fibers, on forcing his diaphragm muscle to contract like hawking a loogy to get the gunk up. But it is those times, thankfully not as often, when, at the end of four or five tube line fishing expeditions when his efforts begin to yield little results, and yet he is still having difficulty breathing, when I see the desperation begin to creep over his face that I close my eyes, still holding his left arm down with some force, and I pray. And I pray hard. I pray hard to the blessed mother Mary and I envision her arms around Archer. It’s not a good prayer stance I know as if feels as if by sheer will I am willing her there. My faith should be stronger where I can just know she is there but the intensity of my desire for relief for Archer only pales in the efforts I know he is giving. And after each session, he is so very wiped out. I told Archer I am praying to Mary when I close my eyes. He nodded. I do it every time because if I did not, it would be unbearable to continue to watch. She and Christ hold me up.   This morning during one of the seemingly never ending suction episodes, Archer’s lead doctor and the case manager walked into the room. Archer was beet red, his eyes were about popping out of his head, tears were being squeezed out of the corners of his eyes from the straining, his entire face was beaded with heavy perspiration, his long mane was wild, his entire upper body was heaving and the two respiratory techs who were shaking his abdomen were giving short orders to each other for what to do in the somewhat frenzied moments since this is honestly not what the techs on the rehab floor are used to doing. So, the case manager and another intern doctor tagging along to learn came into the room talking as they entered. Their conversation did not alter. The case manager was telling the young new doctor that she had been selected for jury duty and how painful it was to even think about going.   They stopped at the foot of Archer’s bed. We were all very focused on deep suctioning respiratory session that was deep in progress. Archer was writhing. I was praying. She literally continued in her conversational tone, Jury duty is so painful..to have to go and just sit there.. to even think I have to sit there is SO painful… all the while Archer was struggling mightily. I couldn’t help myself but to shoot her a look but it did no good. When the session was finished and we are mopping Archer’s face and eyes from the sweat and telling him he did a great job and showing him the amount of gunk he brought up, his doctor stepped forward and kindly told him she can promise him it will get better. She referenced another boy a year ago who was in a similar situation and in a few months he did get better and off his vent. The case manager then chimed in and said, Oh yes, I remember when that boy first came, he was really pitiful… I just couldn’t take it. My lionhearted boy is fighting for his life. That other boy must have been fighting for his life too. I turned and said, Please do not refer to any of these young men here as pitiful. But at that moment, Archer gasped for more air and we were at it again.   About 15 minutes later with the suctioning session behind us and the medical team departed, I went out in the hallway to get Archer some ice for a cold head towel and the medical team was outside another room chatting and having a convivial exchange. As I passed the case manager, I paused and turned to her privately outside the earshot of the others as they carried on, and I said, You know, a few minutes ago, there were two times when my son was being deep suctioned and working really hard on breathing and you said some things that I thought were not kind or at best not appropriate or helpful in our presence. I mentioned the jury duty being so painful as he was writhing and her referencing another quadriplegic boy as pitiful.   To her credit, she said right away, I’m sorry I didn’t mean to. I said, I believe that. I know you didn’t mean to. I added, It would just be helpful in the future if you didn’t say things like that around us while he’s working so hard to live and recover, that’s all. She looked right at me and said, Yes, of course, I should have been more mindful.   Isn’t that just beautiful. What strength she had in that moment to say that to me. It comforted me.   I gave her a big smile and a thumbs up as I continued on my way back into Archer’s room.   As I reflect on it, I really admire her for that response. I believe we will work even better together. She is our case manager.   Archer seems to be more anxious in rehab than in the ICU. I imagine this is because the staff ratio is much greater on this side and his breathing issues are still acute. I continue to gently remind staff to think as if they were Archer: even though he doesn’t “feel” it, his body still responds to being out of alignment in his wheelchair or to feeling an abrasion from a chest belt tightened too far down the body so that it cuts teh tops of his legs when Archer is uprighted in the wheelchair, or the arm straps that always need to be applied in the wheelchair on the weekends when he doesn’t have his hand splints so his arms don’t fall even when he is at rest, or the mouth suction or the other sip and puffs not poking him in the face because we forgot to adjust them when the techs came in to turn Archer, or the tiny hair that is bothering him on his forehead that he had Billy smooth back that he didn’t want to ask staff to do because he’d be waiting a while, or the itch on his nose for the same reason, or the tickle in his ear, or the perspiration on his upper lip to be wiped away. It is still constant but so important as his comfort is everything. It’s such a tiny thing to pay attention to. But the cause of anxiety I think is over the sensation of not being able to breathe, and if Billy or I is not there, and the sip and puff call is out of reach because it was inadvertently knocked just out of reach as he can only go so far in a stiff neck brace to try to get it with his mouth, that is scary. Really, it is legitimately scary. Imagine for one moment the situation for a quadriplegic on a ventilator.   So, we have got to get Archer into a situation off the vent. The pull out chair in his room is not bad to sleep on but I don’t want him anxious like that whether I am here all night or not. So far, Billy when he was here or I have stayed with Archer each night because he has asked us to. Petey and Megan were here this weekend and that helped as well especially with the long night vigils with respiratory issues.   We have been considering the need for another pacemaker, this time for Archer’s diaphragm, to further his ability to get off the vent as his body at C4 may not bel able to make the progress we would all like to see even though his daily fight is nothing short of valiant as he is deep suctioned regularly throughout the day with all the gagging and writhing that that brings, and his nights vary from a few suctions to deep suctions every hour and half or so, with some suctions lasting almost an hour and necessitating full on staff of 5 of us performing the various roles of the deep suction in the dead of the night as Archer gasps to breathe. The stubborn mucous secretions which his body continues to create as a result of his injury are just part of what he has to go through.   There have been so very many times when Arch could have given up. But he didn’t.   For the first time, though, Archer got mad this past weekend. During one of the suctionings, his left hand fell off the side of the bed as his shoulders heaved and I lost the ability to hold it down because I was reaching to hit the button to turn off the blaring respiratory alarm that none of the techs could possibly reach as everyone was working very very hard to keep the respiratory rhythm steady for Archer while they pushed on his abdomen to loosen up the pockets of thick secretions and threaded the tube down into his lungs to pull out the gunk forced up by Archer’s forced gagging. As his arm slipped, he furiously barked, Get my f___ arm! It was stunning to me how loud that command was when he actually made no sound as he had no ability to make any sound. It pierced me and ripped me in two. It was a combination of feeling rejected as I was trying so hard and feeling like I had utterly failed him. Every fiber of his facial muscles were in that command. I know how very protective of his hands and arms he has been since it is so easy for them with their dead weight to flop down and hit hard or sharp things and cause damage to themselves if we are not ever so vigilant. I felt awful that I had failed him. I looked at him with tears and mouthed amidst all the commotion of the suctionings, I am so sorry, my darling. I am so very sorry. He gave me a terse version of a butterfly nod. And the suctioning continued. It’s just hard.   Even as I write you, I feel the paradox: the exhaustion from the monotony and the exhaustion from the high drama of the deep suctionings. Poor Archer is exhausted. The long journey aspect of this ordeal has definitely sunk in. It is not fun. It is down right sobering at every turn.   But honestly, the visitors and cards and prayers have been what has kept Archer’s spirits up. We have heard from so many people and we thank you from the bottom of our hearts. Our room looks like..well, I’m not sure what to compare it to as every inch of wall space is covered with a banner or poster or saying. It’s full of love and color and it’s…full. The pennants are like prayer flags and Archer chose to put the banners signed by so many people from the Archer Mass along the wall where he could see them, in this order: Strength, Hope, Faith, Courage. Pete affixed to the ceiling acoustic tile, right above Archer’s bed where he looks straight up when on his back in his stiff collar, a poster of the picture of his tree in our Cape May back yard, the one I feel had really spoken to me that first week or so that eerily shed and then greened up. When we opened the poster from another Baltimore angel, it took my breath away. Archer hadn’t see the photo and didn’t know why it had been sent. I have much to tell him someday.   I also imagine there is much Archer has been thinking about and I hope he will tell me or somebody someday. In one of the conversations today with a PT or OT or one of the therapists, a reference was made to Archer coming a long way. Archer was in his wheelchair. I said something like, Yes, he sure has. My goodness, we almost lost him in the ICU three times not to mention his near drowning.   As I was mid sentence, Archer looked at me and mouthed, That is the hardest. Please don’t talk about it. It’s the hardest for me. He was referencing his near drowning. He was tender and teary. I pulled up a chair to be along side of him and then said, When you are ready to talk, there is somebody here at Shepherd who can listen. I am here to listen too. I’m trained to listen, and I smiled. He gave me the sweetest smile in return and mouthed, I know…but Not yet.   So… I know there is much there. This recovery is complicated. We will make space for all the many rooms of this mansion.   But today was also a turn the corner kind of day in other ways. The good news is that Archer’s vital capacity (lung) which had been 150 upon arrival at Shepherd is now 600. That’s huge. In order for Archer to get off the vent, his vital capacity needs to be above 1000. The goal is 1200. We are used to goals on this journey. It seems they are all racheted downward as we take whatever we can get honestly and the plans go to plan B or plan C. But I am optimistic Archer can get to 1000.   Let us all breath and feel the lung capacity we have. Basically how you can blow out. It’s really incredibly simple and also very profound for independence and freedom. Notice how your diaphragm moves up and down so freely, and also so powerfully, as it expands your lungs. Imagine trying to effort that when you have no ennervation below the upper chest. I just find it remarkable what Archer still fights to be able to do. Let’s all give thanks for our diaphragms and please say a little prayer to send new nerve impulses to Archer’s diaphragm.   I honestly believe that collectively we can do that. Archer Senft’s time to die is not now. We have seen that. We can collectively imagine Archer’s diaphragm moving freely on its own and he will feel that I know.   We really need Archer to progress with his respiratory issues so that he can then focus on the hard PT.   It’s possible Archer may need an in-exxuflator (cough assist machine) if he continues to improve but still needs help. That way, we oould skip the diaphragmatic pace maker. Archer is not in favor of the pace maker. He believes he will not need it and he is trying hard to cough and practice. To get an in-exxuflator, we need to wait a month from the time when the last chest tube was removed so we will look forward to October 7 for the use of that device in the event Archer has not improved. We were reminded this is a slow process and the secretions are expected for 2-3 months. Oh, Lord, please sustain Arch for the deep suctions ahead.   Believe it or not, that piece of knowledge coupled with the new chest wrap Archer is now sporting as of this afternoon which is hooked up to another machine which literally shakes him around this abdomen before each suctioning, which really does help, has both of us feeling more grounded and hopeful. The uncertainty that is the worst part for Archer now has an approximate length, at least for the abatement of the secretions. So, another really wonderful prayer would be for God to fill Archer with strength to endure these secretions.   It may have crossed your mind why Archer has such respiratory issues when he is C5. Well, Billy and I were given very sobering news two weeks ago which was hard to digest. We wanted to see how Archer might do once moved to rehab. Although his neck break was at C5, because he is a burst, his entire vertebrae at C5 was shattered and parts of it are in his spinal cord in places no one knows. He is also what they call a partial C4 on his right which accounts for his left bicep stronger than his right and for the degree of respiratory issues. His level of functioning is C4. He is classified as C4 ASIA A.   When one of the doctors first told me in the ICU here, I really felt my knees buckle and my lips begin to quiver as I listened. I had to sit down. It’s so commonplace for them that as lovely and kind as they are, there was no recognition of what it was like to hear this level of classification when it was devastating enough that we had been living with Archer as a C5 quad. Now, it’s a C4. Had I written you then it would have been a wailing lament of how can this be, but like all of this, we must accept what it is while also holding the belief, and I do very deeply in my heart, for a Creative Miracle.   I said to Archer today, God is at work now with the Creative Miracle. There are fibers in your body that are beginning to connect. Do you believe that? He looked right at me. Closed his eyes and then opened them again and nodded his head very deliberately and mouthed, Yes, I do.   And a crazy thing happened with my meeting this lady who has a 25 year old daughter here from a car accident and a C2 injury. She was very regal, like an African queen. We were both in the nourishment room where we happened on each other. We chatted for about 10 seconds exchanging the names of our children and the type of injury. She looked hard at me and then said very matter of factly, God is going to work a miracle through your son. She really said that. We had never met. She said she has been blessed since she was young with the ability to know certain things and she felt very strongly when I told her Archer’s name that God was at work.   We have believed that for some time now, I told her. And we just smiled at each other. And we held hands and said we would pray for each other’s children. He daughter can experience as miracle too.   We don’t know when or what it will look like, but God is going to work a miracle, Archer is willing, and it’s going to be so beautiful.   If you are willing, please pray with them the prayer for a Creative Miracle:   Prayer for a Creative Miracle 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, I 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. I 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 his health.   Please fill Archer with your healing power. Cast out all that should not be inside of him. I 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 Archer 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, for ever and ever. Amen.   Thank you and let us give thanks for all that we have as we are all miracles. Sending love Amen


September 16, 2015   September 16, DAY 43, Day 14 at Shepherd Wednesday I have been in Baltimore for two days. I will tell you about the last two days another time.   What’s on my mind now is that I remember the countless times over the last twenty five years that I have counted my blessings. I have literally pinched myself saying how lucky I am: five healthy, kind, smart wonderful children, a good man for my husband, a good home that nurtures our souls and meaningful work. It’s the whole package and I’ve known it for years. I’ve tried to not take it for granted, ever, and I have thanked God I’d like to say everyday in our conversations, but I have forgotten this wealth of blessings at certain times and that is what drove me years ago to daily Mass. I was plain ol scared and knew we had so much abundance and I begged God to strengthen me and to never let me waiver in remembering his goodness. So, my relationship with God has been one where I didn’t rely on him enough. That’s when I would stumble. I wasn’t fully open to the grace that was always mine just for the asking. As it is for everyone.   As I reflect now about grace and faith, I remember so crisply as if it were yesterday that beginning with each of my pregnancies my faith would waiver again and I’d wonder to myself, Is this it, Lord? Is this the time where the other shoe will drop? I would have these non-believer like flashes of dread and fear. I can hear those very words in my head I was saying in my then conversations with God: Life is good, Lord, you have provided us so much. I love you. But will this child be the shoe that drops? I don’t where that expression ever came from but I have heard it my head with each precious life I carried. In those dark flashes, I would think about spina bifida that is in my family profile, mental retardation and birth injury that is in Billy’s family profile, a child missing fingers or toes or being physically malformed in some way, or, as we continued having babies as I entered my 40s, I would entertain thoughts of Down’s syndrome. It was a real crack in my faith and I knew it. I knew I would love whatever baby God gave us. I could never have imagined otherwise. But these thoughts were based in terrifying fear. I so loved being pregnant. I really did. The gift of carrying life in my womb would have me marveling each day of each pregnacy. I put on about 50 lbs with each one too so there was a lot to marvel at. My professional friends whom I wouldn’t see regulary but year to year would often say they had never known me when I wasn’t pregnant! I would try to take good care of myself, refrain from vices as well as some pleasures, swim and eat well. I would watch my legs become larger not so much from swelling but just from the miracle of nature and how she was preparing my smaller frame by making it very sturdy to carry the growing baby. I watched my body closely and I read a lot about human development. I would pray to accept whatever child I was blessed to have. I prayed that prayer fervently.   I recall there was a day when I realized my pregnancy prayer of Dear God and most blessed mother, please give us a healthy baby, had changed to, Dear God and most blessed mother, please give me the faith to accept whatever child we have.   I was always relieved, though, when each of my babies was born perfect. Perfect in every way. Thank you, God for all the babies born perfect in every way every day all over the world. They are such a blessing. We cannot take them for granted. Hopefully we never do.   And yet, I would have these twinges of worry with every pregnancy. I grew up hearing an expression my mom was fond of saying, God only gives you what you can handle. It always resonated for me. I’m sure I internalized that message and believe it to this day. That simple phrase would comfort me when I remembered it. And no matter what came our way as a family, it was true or we made it true by believing it true. And I imagine my own children have internalized that phrase too because they’re heard it and lived it in our family with trials from time to time like all families.   That said, I have always had my heart torn when I would see other parents who had children with so many challenging physical needs. I knew they were still perfect children, they just had malformations or parts that didn’t work. It was hard for me to look at them too long, embarrassed I’d become, even feeling ashamed to be around for too long because we were so darn fortunate with health and athletic ability and good minds etc. It wasn’t pity I felt. It was something else. Each time I would see such a family, which frankly was not all that often which is also why I think entering the Shepherd Center was so jarring (So now you know I’m really not a nice person to have had those thoughts. And I’ve had them before but not feelings of being afraid as I was when we were hustled out of the Medivac transport at our first glimpse of Shepherd, but rather feelings of being ashamed).. I digressed. So each time when I would see those parents and their child at say the state fair, or in the mall, or at the airport, I would feel self conscious and then I would move swiftly into rationalization because the identification was too raw. And I would have one of two threads of thought running around in my head. One was, Thank you, Lord. I know I have amazing children because you really do want me to mediate and help others. You really do want me to be in the world working because I wouldn’t be able to if I had children of special needs.   That’s so shallow but I have felt it in many times over the years. I was finding over the years that my work was a real vocation for me. A ministry of sorts. And I was good at it. And I was very aware that God worked through me to be present for my clients facing difficult decision making and I was not afraid of their pain, their anger and their complexity. I could be present and help them stay sustained to allow the conflict to unfold and make sense out of it in a proactive but at their pace kind of way. I’ve been really clear about that and know God has given me that gift. That it was a role that grew over time into the ministry I feel it is is a thread of thought that I’ve found satisfying albeit perhaps pacifying me at times when I have balanced on the beam as a working mother. But it wasn’t just at seeing a family with a special needs child that I would feel this. When my work has required long hours into the night drafting contracts and designing trainings and began to take me to many places some even exotic, the tug of motherhood was always there and the narcotization of my rationale was comforting. I was, I’d say to myself, doing good in the world. My doing good in the world is good for my family and good for my children. It’s always been a balancing act. and it’s often not balanced but has two parts that make a whole. And it’s always been a necessary and regular discernment of mine to see clearly which work opportunities to accept and which to turn down or not pursue at all. That balancing act has been a daily one for over two decades for me at Baltimore Mediation. And Billy has been a huge reason why I could find my way in both worlds in my home and outside, on that beam that was actually quite sturdy but required a never looking down quality so as not to fall off.   But that other thread of my thoughts when I would see a parent pushing a child in a wheelchair or walking with a child struggling in walking braces was, God, I know why you have given me healthy beautiful children: I am not as strong as those women to care for a child with special needs. I am too weak to do that.   I honestly have had those thoughts from time to time.   And so here I am. I am at Shepherd and now I am at the airport headed to Florida for a benefit talk my team did not cancel as we believed that by this time, I would be able to be with Archer and work too. I’ve just been so naive about so many things. In both worlds, wondering if the beam is sturdy. What we are finding is that it’s a really crazy existence. It’s like Alice in Wonderland. There are very few plans we make that do not shift. It’s not even the one day at a time view. It’s really the one hour at a time.   I notice how few people at the airport are in wheelchairs really. And of those couple of folks I’ve seen, they have use of their arms and hands and possibly even their feet as they clutch their pocketbooks or canes tightly as an attendant wheels them through the crowds. Lord, what will it be like, what is it like for a quadriplegic. I mean, while we wait for a Creative Miracle, we will live in the world we have. Where in the plane does the large motorized wheelchair go? For any quad, they must be given the ability to do weight shifts every 30min. How does that happen on a plane? Maybe it doesn’t. I could understand that. All the ADA and accommodations cases I’ve mediated over the years, it’s hard to accommodate everyone. I wonder. I wonder so many things I’ve not contemplated so heavily before.   The airport feels familiar though with its hustle bustle, lines, security passes and seat assignments. I am grateful to be here actually. I don’t feel fragile any more. I feel…observant. I think that’s it. And I feel solid. I don’t feel rushed.   I’m noticing that I feel ok. And that makes me happy. I have really felt so very tired the last couple or so days. I am not yet able to sleep more than 5 hours, which Billy might tease me and say I’ve never slept more than 5 hours in my life which is mostly true, but that was out of choice and feeling the flow of the night quietude to work. Now, back in Baltimore for two days to see Dutch and check in with my office and clients, I found upon waking both yesterday and this morning that I was very very tired and not sure which bedroom I was in. I looked for the monitors and for Archer. Then I scrambled to think, am I in the apartment? And then realizing, Oh.. I’m in Baltimore. This is our Baltimore bed. And, I have another flight today to Florida. I need to awake Dutch. I need to pack his lunch. And I need to get up.   Here I am in my airplane seat now in the window seat like I like, about 2/3 of the way back in the plane because it’s very full with many families headed to Disney. There is an unhappy young child crying in the back of the plane. You can feel the tension of the passengers and I can only imagine the anxiety of the mama. The child is now screaming. Full out. It’s getting real loud. Actually, it’s uncontrollable. I can tell by his pitch it is getting worse. His inconsolable wailing is pierced by his helpless screams. He’s very unhappy. I can’t see the child but I can picture them back there maybe 6 rows, with mom thinking they were safe in the back. I can hear her say to those around her, I’m so sorry. He’s normally not like this. I’m sorry.   Oh, mama, I know your anxiety. It is not necessary at all to apologize, I say to myself. Of course we know he’s a good boy. Of course we know you’re a good mama, as I imagine that was what she wanted us to know. The child is pretty wound up now. You know that kind of wound up way that happens to young children where it’s very hard to calm them down because the diaphragm keeps heaving up and down. I can picture it in my mind. It’s painful. The larger pale skinned man next to me on the aisle in my row attempting to engage and perhaps trying to bring some relief to this almost insufferable atmosphere, says to me, Probably being poked and tortured by his siblings.   I think, Maybe. Maybe not. I smiled and said, Perhaps so. But I’m just thinking and I remember a time or two when I was in the same boat as she, I said to him.   What I thought but did not share was my gratitude for not giving up on nursing each of our children for a couple of years each and so I could take my young child who was screaming on an airplane and hold him close and discretely put him right on my bosom like a pacifier where he felt nurtured and warm and could self regulate in moments. I also recalled my big kids with my younger ones. I couldn’t imagine a time when any of them poked or ridiculed each other if one was in distress.   I offered to my passenger friend, You know, maybe his siblings (he had imagined the boy had some) feel distressed too by their brother’s crying and are back there trying to console him.   The man looked right at me and incredulously but also teasingly said, That would sure be a better world then wouldn’t it?   I imagined he may have been a younger sibling poked.   A couple more minutes passed. Then the most remarkable thing happened. He engaged me again and said, You know I just thought of a time my older brother did something real nice for me when I was a kid. It was real nice….I had forgotten.   I just looked at him and smiled.   Isn’t that beautiful. He remembered.   I said to him, That’s really beautiful that you remembered. Maybe you can tell him.   We are about to take off. I was really focused on sending calming thoughts to that mama and son. Take a breath Mama and breathe it through. I sent that to her. And to whoever else might be with them or sitting nearby. I was hatching a plan that if the child did not calm down, I was going to stand up and ask everyone to pause a moment and send calming energy to that family. I actually imagined everyone with their arms stretched out like a blessing. (I actually did that one time in a church in Ohio on one of my trips after a man keeled over with a heart attack. That’s a story for another day.) The child calmed down. It was just a matter of time.   We are getting closer to the time to take off. There was just an announcement from the front of the plane asking if anyone on the plane would be willing to give up their seat for a mother and child so they could sit together. How simple is that? There was an empty seat between my passenger new friend and me. I raised my hand. Easy peasy. The attendant said thank you and people started moving around. I looked to see who was coming down the aisle as I began to gather all the stuff I had jammed under the seat. It was not a family getting on up front. It was somebody in the back. They each worked their way out of their row and into the aisle. It was a mother and a young child. I was surprised. I looked and I knew. It was they. The pair. The mother and son. She was a lovely younger Indian looking woman with jewels in her nose and ears. Her face was taught, haggered. Her young non-Indian looking child’s cocoa skinned face was stained with tears. She said, Thank you, thank you, over and over to me as I got out of my row. It was nothing really. Really. It was so easy. But I got it. They must have been separated. Now I understood his grief.   I’m telling you it’s that connection, isn’t it? We are all really connected.   I am thinking of that gooey nosed, falling apart little boy and then renewed again little boy when he was reconnected with his mother. I really felt that same desperate separation in the most primitive way. It was like I was lost. More on that later as there are aspects of trauma I had no idea had happened to me in the shock of that painful but courageous phone call from Davis at the Beach Club.   And it has taken me weeks to get my arms around the gravity of Archer’s injury.   We’re about to take off and I’ve had to put my phone on airplane mode so I’ll have to send this to you later. I’m smiling because now I know another reason why I continue to use my phone and right index finger to type out what I want to share with you. This little phone serves the purpose for now. It’s a tiny screen of light, can be put on silence which is my preferred mode anyway and thus doesn’t disturb Archer in the night, and I just realized I can continue even on the airplane when all other electronics must be turned off. I do laugh at myself though with my one finger method and my very large font because it’s too hard to scroll back to find something I already said and I probably have some typos too. Thank you for just being with me. For all the prayer warriors who need reading glasses as do I, I know you are smiling with me for what we do to be able to read. I highly recommend the large font actually for texting. Ask your kids to do it for you on your phones if you’re not sure how. My kids show me all the time cool things I can do with my iphone. Like and other fun emojis I use all the time. For fun, I did Cher . It’s kinda fun because Archer is such an amazing artist in design, the way he likes to put himself together re clothes, his architectural aesthetic sense, his lax and basketball moves, drawing, painting and food and presentation. So I kinda like that artists paint palette for Ar and of course the t plus Cher, and Cher being French for precious one if I recall high school French class, and then the muscle for strong. Archer Strong. Just amusing myself.   The flight attendant came down the aisle to take our drink orders. I like unsweetened iced tea which is not in airplane drink selections. So for years my pattern is to try to have enough time to buy an iced tea w a lot of ice and a lemon, keep the cup w ice as I board the plane and then order a hot tea black to use as a refill over the remaining ice. It works ok. The attendant brought our drinks. I asked her, If it is not too much trouble after you serve everyone else, I’d love a cup of ice so I can make iced tea. She nodded as she was reaching to pass a full glass of ginger ale to another passenger.   I’ve asked many times over the years for that cup of ice and have even been told if I ask for it when ordering the hot tea that it’s considered a second drink and so they’ll return later. So I now know to wait Sri and am used to it being forgotten. It’s no biggie really. My tea steeped to very dark. I poured it over the remaining ice in my cup which melted on impact. She returned with a cup of ice which kinda surprised me. Why thank you so very much for remembering, I said to her. I really appreciate that. (And I really meant it). I know you have a lot to do. She smiled and handed me the cup of ice which I poured into my large wax paper cup.   I turned to the lady passenger to my left and remarked how very kind it was for the attendant to remember. This dark skinned woman smiled and said, But you were kind too when you gave up your seat for that lady and her boy. That surprised me. I imagine it had been almost an hour since then. I shared with her how easy it was to do, really. I told her how moved I was by her and how she had tears in her eyes.   We both smiled and went back to what we were doing before, in my case writing to you. The next thing I knew the attendant came back and reached over to give me not just another cup of ice but two. I was thrilled and dumped them into my cup. Now I truly had iced tea. It tasted so good. I said, to the attendant, You are so kind! She smiled and said, I really try to be. I believe that. Kindness does take effort. Its not that the effort is hard. Most of the time its down right easy. But the real difficulty of being kind is not the doing of kindness but winning the battle with inertia, or pride or self absorption. I know the self absorption battle well when I’m on task. I can forget to always be kind. I don’t like myself when I’m in that mode that can forget to be kind. I am so happy when I am kind. So go figure. When we lose that inner struggle with ourselves it’s really a triple Loss. The other person doesn’t benefit and I miss out on the easy joy. So being kind to others is really a way of being kind to yourself. It works that way. Like love. It loosens and makes those daily battles winnable.   The light skinned somewhat tanned passenger to my right on the window just leaned over to apologize to us but he asked if we would let him out as he needed to head to the bathroom. I felt so cheerful when he asked. Really I did. I said, No problem! It’s the beauty of being human and alive.   I meant it. That he felt he could ask and not sit in discomfort made me happy. He knew we wouldn’t snarl or grumble. That is good. I think of the many times I have been on the window seat my seat preference but to sit there I often make it a point to empty my bladder before boarding because of not wanting to bother anyone in my row. How silly is that really? Archer makes me see so many things differently now. I was really happy because I realize what a blessing it is to have the awareness and sensation of the need to empty our bladders or our bowels. Pretty basic. But true. Archer does not have that ability. He may never. So, I felt real delight when the man asked if he could get out to use the bathroom. And when I said it’s part of being human, what I should have said is, Celebrate your urge to go!   I can only imagine had I said that what may have happened but it’s really the plumb truth. Give thanks that your nervous system sends signals giving you the urge to go to the bathroom. Give thanks that you can choose when and where and that you even experience discomfort when you are too full. That discomfort is a blessing. Your body is working! And it’s working beautifully even if you feel that urge more often as we get older. Isn’t that beautiful and amazing. And the physical relief that we feel that comes when we are emptied of that which no longer serves us…it is all good.   Oh my gosh, the most remarkable thing just happened. I was just tapped on the shoulder by the man sitting behind me. He handed me a large piece of paper. He motioned behind himself with a hitchhiker thumb. I looked back and there they were, you know who, about 5 or 6 rows back waving and smiling at me. That mother and son. Isn’t that just beautiful. How we can go from the depths of despair to sparkly moments of joy. I waved back and turned back around to study the message.   It was a torn out page from a cartoon coloring book and read at the top, The Dangerous Dreadhead. The dangerous dreadhead! That’s so funny and so boyish. He had colored this character beautifully with chalk scribbles in and outside the lines just like any budding artist at 3 or 4 years. On the page along the left margin was written in mature hand writing, Thank you so much for giving up your seat.   And under that in a very young child’s hand was his name. The artist’s signature. It looks almost like A M e N. Could that be? Amen? Maybe it wasn’t a signature. No, of course it was. Every child’s coming in to separation individuation loves to write their name on any and all of their handiwork. I knew it was his name and wondered what it was. I wasn’t sure since it appeared he had run out of page as so often happens when a young writer is trying to fit their name into a limited space. Ah, I turned it over. On the other side was a Lionzord spaceship, also scribbled beautifully with pink and lilac and Manila chalk, and Mom has written, Love Davian & Amans. Amans.   Thank you, Mama. Thank you, young artist. The gratitude is all mine. And I know it’s yours too.   That’s the beauty.   Kindness inspires gratitude and gratitude inspires kindness. And so it goes. But it doesn’t just go around and around. It expands.   I feel very joyous to receive this precious gift.   Isn’t it amazing how we feel about each other with the simplest of interactions and acts of kindness.   Yesterday was the Jewish New Years. It’s the year 5776 I was told. I am grateful for the prayers of my Jewish friends, clients and colleagues. One of my friends told me she prayed for Archer to be inscribed in The Book of Life. The Book of Life. I love that. And in her tradition, she and her congregation eat apples & honey to celebrate the sweetness of life and the new year. I tasted that sweetness with her in my heart. I also thought of bitter sweet. But it’s the sweetness that is so hopeful. I am so grateful for hopefulness. And for friends. And for traditions.   I’m now at Disney the Magical Kingdom. A reception starts soon. It will be weird I think. I’m in a different place. Pray for Archer. The separation is painful. Billy is doing a great job. He reports that Archer is still fighting pain. But he was transferred into the rehab unit. That is huge. Billy says the suctions are dreaded. But oh so necessary for life. L’Chaim! Yes! To life!   Sending you abundant love and prayers. Pray your favorite prayer today. Be grateful for your body and your bowels and bladder. And for precious gifts, the ones that mean so much. For friendship. For love. For faith. For praying together. Be kind, it’s really not always that hard. And if it’s not easy, give it up today for someone who is in pain.   Join me if you’d like in my special prayer of the day which is to the blessed mother that she is by Archer’s side giving him encouragement and strength and making him feel connected and safe and loved. Archer Strong. Amen.


Sunday, September 13, 2015   September 11-September 13, DAYS 38-40, Day 9-11 at Shepherd Sunday   Come to the shepherd…and rest. Even Jesus retreated to the desert to rest and stayed for 40 days. We are on day 40 and we are in need of rest.   I’d say Archer and I are both tired. But it is Archer who has real reason to be.   Archer’s Friday surgery was one no one wants to have of course as the sinus cavities are in an area separated from the brain only by bone that is paper thin. But it is a surgery many people do have. For Archer, our real concern for this surgery was not as much the pressure on the brain and the potential for meningitis and a brain abces as it was Archer’s being strong enough to make it through surgery from a respiratory perspective. And now, 48 plus hours later, I think I would amend that to say strong enough to make it through the after surgery drainage, dependent as he still is on the ventilator and his tracheostomy. He is now very physically exhausted.   Archer is still in so much pain. It has been difficult to manage to a number below a 5 on a scale of 1-10. He is often at 7-8. Often. It is heartbreaking. The drainage from the sinus surgery has increased the amount of respiratory suctioning of his lungs by five fold, at least, bringing up plugs after plugs of dark, bloody mucous. Each respiratory therapist remarks that it’s a wonder he can breathe at all. It is a wonder. He desaturates to as low at 70. That’s not a good number. He is his own advocate though and as much as he dreads the suctions which have been hourly to as often as every 20 minutes, even now on Sunday. He watches his own monitors closely to stay ahead of the crisis moment when he gasps for air because he truly can’t breath, regardless of the amount of air from the vent and regardless of the repaired capacity of his lungs. He fills up with drainage and can’t breath because he has no way to get it out of his body except deep suction.   Archer is very watchful of all his settings. Indeed, upon returning from each of his now six surgeries, wheeled in by a different crew of medical technicians whether in Atlantic City or Atlanta, he always makes facial expressions for me, sometimes very feeble, to make sure they place his bed where he can see the monitor screens and a clock, at all times. He’s pretty amazing that way. He’s precise and alert and good with numbers. I have no doubt he will be a good advocate for his own health; he already is. That is all good. And the stories I could tell you over these 40 days when he noticed something related to his numbers before anyone else did, including me… I will save for later. But this weekend in the Shepherd ICU, he has been glancing up at the monitor over his right shoulder to see where his O2 sat rate is. We are so grateful that his oxygen saturation shortly after arriving at Shepherd was at 98%-100% on his own. On his own: that progress is amazing, thank you, prayer warriors, for breathing and praying to God for ease as it has surely been part of Archer’s body healing.   But as you know from the incidents that started mid week last week, those percentages can slide backwards because of all the mucous buildup in his lungs that he is not able to cough up like you or I. So, I have noticed that the magic number for Archer’s watchful eye is 95% rather than waiting until say, 92% when the staff will come in as they monitor his screens at a desk outside as well. He notices first and will click for me or sip and puff for a nurse so that he stays ahead of emergencies, which in this latest instance means, I really can’t breathe, and it’s a horrible situation. He is so weak from the many suctionings that began Friday night. His weakness was compounded after surgery by his not having had any nourishment for almost 24 hours since they stop the feeding tube feedings at midnight prior to surgery even with a surgery scheduled for early evening—I’m really not sure why they have to do that as it really is a long time, and if you think about it, and if you have ever had surgery, you hope you are scheduled first in the morning or later morning and definitely by noon because you feel faint—well, by the time we made it back to his room Friday night, it was 10:30pm/11pm, almost 24 hours without any food or water. But the real reason he is feeling so weak is that the suctionings of the last 48 hours have raised the bar on torture for him. The mucous is so thick they use biocarbonate rather than saline injected into his trach (not painful just more intense) and not just sometimes but always now there is a second respiratory therapist involved to not only hold the large “bag”, which is a thick but soft plastic bulb that bulges with air upon letting off hand pressure and then exhales air into Archer’s system at the same rhythm as the breathing he is doing after the deep suction tube is withdrawn from his trach to quickly give him air while he is gagging to get the rest of the gunk out. Each therapists press on the bulging bag sounds like a loud gust of wind, but the therapist is also busy firmly but gently rubbing and thumping on Archer’s lower abdomen to further break up the thick mucous plugs trapped in Archer’s lungs, while the other therapist skillfully and sometimes frenetically force-threads the 12 inches of plastic tubing down Archer’s esophagus into his lungs with the hope that Archer, in concert with this team and the devices, will be able to gag and pull up enough of the gunk to allow him to breathe. These rounds require not just one or two go downs where the gagging and strain is tremendous but five or six, that’s five or six times that tube is threaded down his windpipe, each time. Archer is exhausted. And the gunk was still dark brown, bloody and dark ugly yellow even today. Lord only knows what the insides of his sinus cavities must have looked like. Even so, the good news is that Archer reported last night to the nurse who asked him what his pain level was in his nose and sinuses, that he was a 2. A 2 out of 10! Yeah! I was so relieved.   I was also so naive. I smiled and said to Arch, That is so good, Arch. We’ll take that! We can live with that number, right? He looked at me with very sad weak eyes and mouthed, Shoulders 6. It took my breath away. Oh my gosh. This pain. How will we manage it. I looked at him and could only say, I am so sorry, my darling. Stay strong. Feel the prayers. I love you. He closed his eyes and weakly mouthed, I love you too.   So, he has really needed your prayers for ease of breath so very much, and those prayers matter. He could have given up, but he hasn’t. It has crossed my mind on more than one occasion how easy it would be to give up. I think of the times I may have wanted to give up or was tempted to not do something that it would have been better had I. I bet there might be a time or two when you may have wanted to give up at something that was hard but you knew you should do it because it was good for you, or good for someone else. Like avoiding sugar or not having a second coffee, or holding back on a sharp judgment or harsh word, or maybe it’s something at work or school that you need to complete and just can’t get around to it, or maybe it’s a conversation you need to have but you know it will be hard. Don’t give up. Stay strong in your conviction. Stay steadfast. You can do it. That’s what I’ve said to Archer. Please send that feeling you have when you stay steadfast and you don’t give up and you do it to Archer. You know the feeling, the one where your body literally feels better, cleaner and thus your heart feel lighter more joyful or where you feel a sense of accomplishment or well-being or relief and your heart is uplifted, it’s that feeling. Please send that feeling to Archer right now in a little prayer.   I think back on Friday night, Archer’s seventh surgical procedure in 38 days. It’s really unbelievable to think back on all that he has been through. And I believe we probably have some bumps ahead we don’t even know about. But one day at a time.   I’ll tell you about the surgery as I know you had your clocks set to 5pm EST to pray. And I thank you for that. Twenty minutes before surgery start time, we were expertly wheeled at breakneck speed (Oh my Lord, I can’t believe I just used that expression but it’s true, we were flying) down the hallway though the tunnel that connects Shepherd Center to Piedmont Hospital, and arrived at the receiving area with enough papers in different dossiers that it reminded me of the many documents I’ve seen presented to various officials upon crossing borders. There was a wait and a bit of a flurry. Thus we passed from Shepherd country to Piedmont country with the literal formal hand exchange of two document folders neatly prepared, one with Archer’s medical information, the other with the transfer papers. There was a definite formality. It was interesting. Archer was whisked away not 5 minutes thereafter into the surgery room, allowing just enough time for the anethsiologists to give me their spiel and giving me just enough time to sign all the consents and to take our surgeon’s hands in mine, kiss them, and look him in the eyes thanking him for taking good care of our lionhearted son and for allowing the angels to guide his skillful hands.   And I was escorted into the family waiting room, to wait. One of my college friends living in Atlanta was there waiting for me. Isn’t that kind? It was so kind. I pulled out my rosary and she pulled out hers. She laughed and said, Louise, I had to go locate this thing which I knew I had but had no idea where. It’s really old, it was my grandmother’s, I kind of like it though. I’m not big on praying. Haven’t done it a long time. But I’m going to do it for you. I am feeling differently about prayer now. I was so very moved. Isn’t that beautiful. Yes, it was a beautiful rosary with glass cut beads. I pulled out my little pink card I carry with me that reminds me of the order of the mysteries of the rosary and which ones to pray on which days. Kinda nice as it varies the days and makes me feel very close to Jesus and his life. I don’t think it’s necessary to pray the mysteries when reciting a rosary, Lord only knows I mostly do not, but it is good and contemplative for me when I do. Ok, Friday. The Sorrowful mysteries. She and I began as we whispered together and pondered in our hearts with each of the five decades starting with the first, the Agony in the Garden for True Repentance. We were in solidarity sitting in the two chairs in a corner of the room mostly emptied now. When we got to the third decade and the mystery was the Crowning of Thorns for Moral Courage, we both looked at each other, and she said, This one is for Archer. And we said the Hail Marys, Our Fathers, Glory Be and Hail Holy Queen prayers with all our hearts.   As we got to the fourth decade, the Carrying of the Cross for Patience, she said to me, This one is for us. Yes, I nodded, this one is for us. And we closed our eyes and began our quiet prayer litany. I could really feel the love. We were about finished with a whole rosary, still whispering the prayers together as we sat cattycorner to each other with our eyes closed in contemplation when the waiting room lady came and, standing over me, asked, Are you Mrs. Senft? Yes, I said, with a bit of a start. She continued, I just wanted to tell you, Ma’m, that surgery hasn’t posted yet. I asked, What does that mean ‘that surgery hasn’t posted yet’? It was 6:30pm. Why had it not yet started? I knew it wasn’t because of waiting on an anethsiologist team because I met them both and I knew it wasn’t because of waiting on a nurse, because I met her too and watched her wheel Archer away, and I knew it wasn’t because of waiting on the surgeon because I kissed his hands and watched him duck into the surgery bay where Archer was going. What does that mean? She said, Oh, weell, you know, it can mean they were havin’ a few leettle issues with getting the breathing right with the anesthesiology and all. There it was. Oh Lord, please help Archer. Just what we had been concerned about. We went back to our rosary with ferver. It’s amazingly comforting.   She came back shortly thereafter and told us surgery had posted about 6:50pm. I sent you a text/post to let you know. We are just so very very grateful for your prayers. I knew that he was being held in the safety net of your prayers since 5pm. Archer needed them. We all needed them. We finished one rosary and began another. The words of prayers may not seem to matter so much but the prayers that are so ancient and enduring are ancient and enduring for a reason. I imagine God doesn’t mind though whatever the words of your prayer are. I imagine he is happy to have a conversation with us. Isn’t that crazy to think that God is happy that we have a conversation with him? I believe that is right though. He is so loving and so wanting us to be with Him. Isn’t that what it’s like for us as mothers, as fathers? I know that’s what it’s like for you. We just want that connection with our children, no matter how old, no matter how far away, no matter what has happened between us all the good and all the bad. God will accept us no matter where we are and no matter what kind of shape we are in when we just reach out to him. That knowing is just so beautiful to me. That kind of love is everything really. Imagine if each time someone reached out to you with love trying to connect, you reached back in some small way. And imagine if each time you reached out to someone you love, expecially someone you may have hurt, or they may have hurt you, but you decided to reach out, and imagine if they reached back. We would have so much more well-being. Love can restore all.   And that kind of love is expansive. There is enough, always enough. And it’s not meant for just a few. This I have thought about many times over the years as it relates to children. I remember when Billy and I had Paula and when she was first born and I would hold her in her first couple days of life outside my womb and just gaze at her, marveling that I had a baby. A beautiful baby girl. And then I remember the day when she was about two weeks old and I fell in love with her. Deeply. I remember saying to myself, Oh my God, I am falling in love with her. And I remember thinking that I could not love anyone as deeply as I loved her, that little baby lying on the changing table as I kissed her little toes and rubbed her tiny little legs. And she looked at me and smiled. I couldn’t believe it. I remember being elated, She smiled at me! I swear she smiled at me! And my heart leapt for joy. That connection was so stunning. I know that’s what it’s like for God with us because whatever we feel that is so good comes from that love God has for us.   God really calls us each by name and there is the potential for great intimacy in that love. I know God is calling Archer by name. I know he is calling all of us. And there is plenty of love for all of us. I know this in a very humble kind of way, but I know this. As Billy and I were blessed with more children, I remember wondering how could there be enough love for a second child when I felt all my love for one child, and then when that second child came into our lives, I felt all my love for two children. I remember so clearly when Pete was born, our first son, and I felt this singular one to one totally merged feeling with this tiny little baby boy. My love expanded because I was now in love with two children. And then I was in love with three children, with Dewey, who bears my father’s name, my father with whom I have had such a deep spiritual connection during his life and since his death when I was very young so with Dewey it was like having double love. And so love expands. It has no borders. It has this amazing elastic quality, maybe like neuroplasticity where it is always developing and renewing itself. Maybe that is God’s love in our bodies. Yes, that’s it perhaps a way of thinking about it for Archer. God’s love is so expansive and that love creates new connections, new pathways, new fibers, and it’s happening right now for Archer and in his body.   And I remember the exact moment of falling in love with Archer, who was almost named Moses (a family name for me that Billy loved, Moses Hawkins, a Revolutionary War hero) but I had to veto that, literally as he was coming out of my womb into the world, and Billy was like a spring when our OB who delivered all my babies said, It’s another boy! While bouncing up, Billy exclaimed, Moses!? and I shook my head in the negative, and he said, Archer! and so our little third son was named for Moses’ son: Archer Hawkins.   And I remember the exact moment of falling in love with Dutch, who is Billy’s name sake, a Jr. and Senft is a Dutch name meaning the mustard seed but at the time when the OB said, It’s another boy! we still did not have a name we had settled on for exactly what to call him, so my sister in law had the cute idea of just calling him little double Dutch until we decided. Dutch it became.   Oh, I digress but each time I remember the total immersion of falling deeply in love with each of my sons as if for the first and only and last time. Like having blinders on to everything else, all one, all merged, all love. And, yet the miracle of it all is that there was always enough love to go around. The new falling in love experience never took away from the other love for the other children. If anything, it expanded it. Human beings have incredible capacity to love, and to love a lot of people. And so it must be with God since we are made in his image. So, every child can be a favorite and should be a favorite because each child is unique and special in his or her individual way. You know as I think about it, I think that every time I had that indelible deep falling in love forever experience with each of my babies, each was around two weeks of age, so it must be biologically hardwired. I knew it and felt it. I imagine most mothers do. The miracle of that falling in love with your babies. When we are in love and have that feeling surge throughout our bodies and hearts and minds, it is the most natural thing to want to protect them, especially when they are so vulnerable. It is like that now with Archer.   Nature has built us this way I know to care for our young. Isn’t God the most creative to have created us like that. It’s pretty primative and pretty enlightened. I could really go on because I have thought about this and marveled at a mother’s biological love for her baby for a couple decades now. That for us as mothers, even our breast milk is biologically formulated as just uniquely ours and patented for each of our babies, unique in all the world, and ever changing to meet the daily needs of the development of what our baby needs that very day, because the bodies are wired to each other with various transmitters. It’s all so amazing. And so, I have thought about love these many nights here with Archer. God’s love. Mother Mary’s love. And so I have had this idea that a mother’s love, and mothers’ collectively, could be wired in such solidarity together for a child that we might move mountains. I believe we are capable. Your love. It’s very real. It’s very tangible. It’s very powerful and protecting. And it’s very expansive. It’s really all we need.   So, it was about 8pm or so when Archer’s ENT surgeon came to find me in the now completely empty family waiting area. Everything Ok? I asked. Everything Ok, he said. Thank you, Lord, I said to myself. He began, Why don’t we talk in here as he motioned to a side room. My heart dropped; why couldn’t he just take me back to see Archer right now?… but it was really just his way to talk privately. In a little consult room, he told me it had all gone well once underway and that Archer was really strong, the cavities were full and the color was brown, bloody and some yellow like pus. They’d culture it. I thanked him and said it still confounded me how they knew it was a sinus infection when there were no indications of sinus infection, no nasal drip, no headaches, no sinus aches. He said, But there were indications. His high white count that remained high after treating everything else and his procalcitonin count that was very very high. Procalcitonin? That is a new one for me. It’s a test given to assess any indication of sepsis. Modern medicine and the granular view and all the specialties it takes is really another amazement to me and a source of gratitude. He said, We monitor for everything. That’s why you pay so much. I thanked him and shared with him that I hope he might remember Archer Senft because God is going to do wonderous things through Archer.   As I think now of Archer’s ENT surgeon, I realize I meant to tell you about the bedside exploratory scope, another small procedure I had to sign consents for too, that he did through Archer’s nose a couple days ago to make sure they needed to do the surgery as they were ruling out any and all the other reasons for Archer’s high white blood cell count, which remained at 18 and had only gone down to 16 after major antibiotic treatment. It was still at 12 when we had the surgery. After the scope, he told me Archer’s vocal cords are split. We have two vocal cords. Yours and my vocal chords are parallel with each other. They need to be to give us voice. Archer’s unfortunately are scissored. I asked why. He said he had no explanation but wanted me to know what he had found. He told me he could widen them with the scope but that they would not come together (yet).   Oh, it would be a real loss if we didn’t hear the timber of Archer’s voice again, not to mention all the different other voices and accents Archer is so good at mimicking which have left us all rolling in laughter. So, please pray too for Archer’s vocal cords to repair. And when you speak, listen to your own voice and notice its fine quality and how unique it is, like no other. Your voice is really very unique to you. It really is. It has a quality. Your signature. God calls us by name and he hears each voice, each one of kind in all the world voice. Please Lord, restore Archer’s audible voice.   So this changes things. We have been waiting for the much prayed for and anticipated vent weaning so that Archer can speak again and had accepted that that might mean having to take small steps to learn how to use the air in his trach to activate his voice box for a period of time. Now, we’ve got a different kind of fish to fry and it’s just a waiting game. Boy, are we ever learning that. Small steps. Patience. Small steps. Nothing can be rushed. The body needs time. God’s time.   It’s incredible daily discipline for me to be patient. Who hasn’t heard that Patience is a virtue, I know. But here, patience is a primary way to cope. That is hard when I know Archer has the will, the desire and your prayers and love.   I hear Billy’s voice in my ear as he’s fond of saying to me when I’m in the serious over the top get it done mode at home issuing plays and orders to the kids and everyone else to clean and move and pick up and whatever else it is that needs to get done, or when I’m in creative mode at the office and I’m rattling off to my team my vision and a zillion ideas and all the things that we will be doing for and what’s expected and needed and who needs to do what and what it will look like etc etc, and Billy would say to me in a private moment, Patience, Jedi Master. He was always sparing for when he chose to say that to me. But each time he did or does, it is always the perfect moment. And only he could say that to me. And it always makes me laugh.   I am trying to remember that feeling of laughing about patience to alleviate the weight of it now.   Back to the hospital Friday night, after the surgeon left, I still had to wait a bit until Archer had come out of anethsiology before I could see him. When I got to him bedside, we were waiting quietly in a bay to be wheeled back to Shepherd. I noticed there was blood on his shoulder under his gown. I peeled back the gown and oh, my, there was a whole lot of bright red new blood. A pool of it. I learned after a flurry of folks cleaning and a couple docs coming by to check it out that it was from his trach which was probably moved around during the surgery.   As we waited to cross the border, I heard over the PA system at the hospital a woman in a southern accent, Vis’tn hours are almost ova(er). You have 15 meenutes to say good night to youa loved ones. They need rest to heal now.   I smiled. How about that for a message to move folks along.   15 minutes later, over the PA system came the same voice, It’s 9pm and vis’tn hours are now ova. Thank you for vis’tn youa loved ones. Please come back and visit them tomorrow. Good night.   I just love that message. And that older woman. She had such kindness in her voice. It was not a recording. I think it would be great if all hospitals had such a kind message every evening.   In the morning, I told Archer I needed to go and pick up one of my sisters who was coming in from Chicago to help with the weekend, so good of her. It was kinda weird what happened. I left Shepherd really for the first time other than the few blocks to attend Mass. I needed to GPS how to get to the Atlanta airport. I noticed as I left Shepherd to go to the airport just how tentative and cautious I was. I was driving somewhere for the first time since arriving really. I am used to driving in cities for the first time in many places around the US and the world, and I do so and love it. But here in this moment and time it was so different. It was like my body was on hyper alert. So that when someone moved in front of me in a lane, I twinged. I was so sensitive and fragile really. It was kind of weird. I thought of old people or anyone who has been shut in for awhile and how the transition to movement really needs to be gradual. No quick or loud movements. I was passing all these beautiful looking restaurants but noticing how my usual desire to explore was really curbed and my love of driving and my let’s go and figure this new place out was really dulled. And I was just observing that. I think that is interesting. I also realized it was Day 39 and that after Archer’s surgery the night before, I realized I needed to get a real good night’s sleep. I looked forward to seeing if I could carve out 7 hours because I was really tired. I could feel that kind of dog tired to the bone feeling.   But as I drove along getting on the byways and highways of this new city for us, I saw signs for Gladys Knight Highway (our family loves the Motown sound) and the Jimmy Carter Library (we have always admired his work in international peace relations). I felt I was awakened to the potential of Atlanta for us and what a wonderful place it probably is.   The rest of the day back at Shepherd was rest for Archer, he was really conserving every ounce he had, saving energy for the suctions. He was in great pain. He was not interested in food or drink all day; I am grateful for the PEG feeding tube in his belly.   My sister, an Atlanta friend and I busied ourselves getting Archer’s new room for the next few months put together so that it is fabulous and lively with the colorful pennants from Archer’s grade school Cathedral families dancing across the tops of all the walls of the room, the nature posters from a Cape May friend, a Baltimore Orioles flag and Maryland flag and all the Archer Strong posters from McDonogh and friends, plus the orchid plant, lavender and peppermint essential oils, and a new CD player to play some wonderful meditation CDs Archer has been sent and enjoys. We thought he might move finally to his rehab room but no go. Patience. He is very weak as you know. But your prayers will strengthen him.   I told him at 5pm that a Mass was being said for him in Baltimore at the Cathedral of Mary Our Queen. He could barely open his eyes but he nodded. We later heard the number of people there was stunning and how very beautiful it was with the McDonogh choir. I know your hearts were uplifted because by the end of the night Archer was getting a bit better. Thank you to all who attended. It’s this crazy roller coaster ride I am actually getting used to but never used to if you know what I mean. There are these really low days of physical weakness and endurance on a thread followed by an amazing day or so, then back to intense pain. A few bland days of mediocrity would be nice. The memories of the amazing days can carry us through.   Remember how I was telling you about how amazing Thursday was for Archer with all the various PT, OT, Swallow T, and …food? It really felt like he had turned the corner, and all the doctors and specialists were noting it. The day was so spectacular that Archer increased his 5.5 hours in the motorized wheel chair, not moving yet in the chair but practicing being upright with sip and puff weight shifts every 30 min. His determination is clear. He learned that when he moved across the hall to the adolescent rehab floor in a room now decorated that has been waiting for him for over a week, that all the kids are upright in their motorized or regular wheel chairs 10-14 hours a day, so I know he wanted to get ready. I know Archer. But there was another factor that happened that day in the early afternoon.   A young man, in his 30’s I’d say, from one of the nearby local Catholic churches came by to visit to say hello. He asked me if Archer would like to have communion. I began, No, I wish he could, he’s on a feeding… Wait! Yes he can! How perfect is that! The very day Archer was able to eat for the very first time in over a month, a volunteer arrived with communion. And, as it turns out, it was a very beautiful moment, surely one that contributed to Archer’s strength he felt the rest of the day into the night.   Our kind visitor brought out his missalette prayer book and began with the sign of the cross and a long prayer. I realized it was going to be a bit formal. It’s not how I have done it when I have delivered communion to people who are ill, but I liked it. Probably the way I should have done it but did not. He was so earnest. I will learn from him.   He read a prayer from the little missalette book and proceeded to invite us to state any intentions we had for God, which we could state aloud or privately in our hearts. Archer closed his eyes. I did as well. After a few moments of silence, I opened my eyes ready to see if Archer wanted to go first about stating his intention. My personal intention was, Please Lord allow me to be open to your will, and to do what I need to do to help Archer and you do your work. Archer still had his eyes closed. I closed mine again. I waited a few more seconds and opened my eyes. Archer’s eyes were will closed, and he had a look on his face as if in deep thought, or really, more like he was listening deeply. I studied him a moment and then felt almost self-conscious. It seemed very private, Archer’s privacy. So this time, I closed my eyes and waited a really long time. I don’t know how long but a long time. It was peaceful but also pregnant as I waited for Archer to click to me when he had finished and had opened his eyes. He did not. I kept my eyes closed. My focus had shifted to not wanting to get in the way of whatever it was Archer and God were talking about. I really wish I could have disappeared. All the while this kind thin young man held the space. I finally opened my eyes and while Archer’s eyes were still closed, I just waited now with my eyes open on soft. I noticed how beautiful Archer was. When he slowly opened his eyes, he slowly glanced at me tenderly and then turned slightly to look right at the Eucharistic minister and then Archer nodded. He was ready. It was such a beautiful moment. I saw as if for the first time Archer’s deep spiritual capacity, having that kind of a conversation in silence with such purpose and focus with our Lord. I wonder what Archer’s petition was. I don’t need to know. God knows and that’s all that matters. It seemed as though Archer was listening very intently.   I am marveling how in all the hustle and bustle of that busy and exciting day of physical milestones, Archer was deep in prayer.   Saturday night, with a carryover of the difficulties of the day, Lillian asked if she could stay with Archer. He consented so long as she’d hear and come to his clicking. He tested her out I’ll have you know. And she was there. I drove off campus to rest.   I lay in bed and began to look at emails which I am now trying to look at each night if I can. Hopefully in another week I will have a rhythm. Everything remains so topsy- turvy with Archer still in ICU. Hard to believe it’s been 11 more days in ICU. I opened my email to 2 pictures that had been sent to me. I love pictures of Archer. He does too. But somehow this picture, taken maybe six years ago when Archer was probably 11 and he was with Dutch and his friend in their Ravens football jerseys at a game, Archer with a purple bandana around his forehead, his blonde hair a bit shaggy and his face and skin very sunkissed so I knew it must have been an August pre-season game and we must have come in straight from the beach in Cape May. The photo of him looked very…Archer like. Free, kind and creative. My eyes were drawn to his sweet arms and hands and I just felt the rush again of the tears, this time really really bad. And really really sad. I really felt blue. I know I am also tired. I believe in a Creative Miracle because I have to. I feel at times I might die of a heartbreak if I don’t.   When I’m with Arch, in his presence, I feel strong, but when I leave our little cocoon and look outward, I’m more vulnerable. It’s odd. I know it will pass. I know it’s momentary. I know I have amazing people to talk with and work things through. I know it’s normal. I also know it’s just the way it is, for now. I want to embrace it as it unfolds but not let it define who I am. I am seeking the discernment between the two.   There are just so many paradoxes; every thing has two sides. Progress and fatigue. Hope and delusion. Believing and reality. Awareness and suspicion. Alertness and exhaustion. Strength and weakness so the holy spirit can do its work. So many paradoxes. This is complex stuff.   I looked at those photos and honestly couldn’t sleep, and more honestly, I really didn’t want to, I wanted to show Archer the photo of the amazing Archer Mass at the Cathedral, so I drove back.   I’d never come into the garage at Shepherd so late at night. There was a sign placard that read the garage was closed. I inched forward and a security guard came out. She said, I’m sorry, ma’m, vis’tn hours are over. I said, Oh, but I’m not a visitor. My son is here. She said, Yes, I think I saw you earlier. You spending the night with him? I said, Yes. Oh, well then, she said, You just come right on in, as she moved the large tented placard out of the entrance allowing me to drive into the garage. Thank you, I said. I felt this huge urge to show her the absolutely amazing picture of the Archer Mass at the Cathedral. May I show you something amazing? I held up my phone with the picture and showed her. She said, Wooowww. (The Cathedral after all is a very massive and impressive structure and very gorgeous when it is filled with people.) She then said, All those people… I said, Yes, All those people. They are so good aren’t they? To have come together like that. She said again, So many. I said, Yes. So many. And all praying together. It’s wonderful isn’t it? She said, You know my mother taught me all about God and such, you know, but I’m tellin’ you, it was when I had my child, oh Lord I came to know God. I mean God and I really know each other. I just give it all over to Him. All that I have here, my job and all, I mean it’s good, it’s all real good and all, but if you took it all away, I’d still have God, and that’s all I need. I was really moved by this. Without a tragedy, she already had the secret figured out.   Then she said to me with a grin, Are we going to be seeing a lot of each other? I said, I’m ‘fraid so. She said, Don’t be afraid. You are at the best facility in the world. While I don’t know it personally cause I never been up there, I do know they’ll take real good care of your boy…. They take care of all of us.   I was really struck by that too. They take care of all of us. The Shepherd. The night watchman in the garage with such love and respect for her employer.   I brightened and asked her her name and told her mine. She said, With all those people praying for your son, something good is going to happen.   I said, Yes, I believe that. She said, I’ll remember you. I said, I’ll remember you too. She smiled and stated very matter of factly, We’re friends now.   Yes, I guess we are.   Something good is going to happen. It already is.   Friendship. Friendships, they really come in so many varieties. Isn’t it true we have some friendships that were sealed in the instant we met each other. Those easy spontaneous open smiles where you have that immediate connection. And other friendships that were over a really meaningful conversation that seemed like maybe an hour but they are really all night long conversations like we would have with childhood friends at slumber parties or that we have over long lingering lunches with girlfriends into the late afternoon, or with colleagues on long transcontinental flights so that when you finish, the sun comes up and your relationship is cemented for life whether you remember the details or not of everything you talked about for hours non stop. Then there are those that are circumstantial and which go dormant, but they were wonderful. And then there are those that were deep and just drifted apart with our lives being lived in different places in different time zones with different people, but when we reconnect, we pick up where we left off as if no time has passed. Friendship. They really are on heart time because the only thing that matters is how much we love each other.   It seems to me that what makes the friendship forever is that emotional connection of love and safety. You know how you just know a friend and they know you because you love each other and you never want any harm to come to them and vice versa. Like what I am experiencing from so many of you. And that is what I told Archer. He will have many friends in his life, new friends as well as old friends and even if the old friends lose track of you or you lose track of them as you move in different directions, the love from friendship, even those he may not be so close with but who are still in the larger friendship circle, will all show up for him along the way, now and later in life when he needs them the most. Friendships are elastic like that. Because love is elastic like that. We are all really so connected. I going to tell you goodnight. But I just thought of something else I want to tell you briefly but it’s kinda big.   Billy texted me a screen shot of a letter he and I received in Baltimore. It is a very formal, simple but elegant, hand numbered letter. It is from the personal representative to His Holiness. I am not kidding. It is hard to believe, but it is true. A letter from the Cardinal who serves as the personal representative of Pope Francis. The letter is so beautiful and very personal about Archer. I wonder still which angels whispered to the Vatican. I don’t know, whoever you are, thank you. Our beloved Pope Francis wrote about hearing of all the prayers for Archer. It’s all of you, dear ones, collectively, in solidarity. For Archer, for each other. We are so in this together.   The Pope wrote to allow God’s will to be done. Archer is open and willing for God’s will to be done. It cannot be done without you. We believe there will be a Creative Miracle. We just don’t know what it will look like. We will wait. We will be patient. Please pray for my capacity and all of our capacity together to be patient, daily, perhaps for many years, perhaps a life time. And to never give up hope. And to feel the joy in our hearts about that hope and about the kind of friendship that is rooted in love and safety. And listen to the timbre of your voice and give thanks. Please pray the blessed mother.   Billy arrives in the morning. It will be a good day. Amen


September 11, 2015   September 11, 2015 DAY 38. 8pm   All good. Finished! He’s was a champ! The angels danced on his surgeon’s fingers. Thank you, God, and oh clement blessed mother, for the skillfulness of our bodies and our surgeon’s hands. No more potential risk to Archer’s brain. Archer strong! Amen   DAY 38 Family & Friends Update Archers Army and Prayer Warriors: Please storm heaven now. Difficulties with anesthesia and breathing. Surgery now underway at 6:50. Please pray with me if you are so inclined the 3 prayers of the rosary. Or whatever prayer is part of your beautiful tradition as we are all in this together and God hears all our pleas   Hail Mary, full of grace, the Lord is with thee. Blessed art thou amongst women and blessed is the fruit of thy womb, Jesus. Holy Mary, mother of God, pray for us, now and at the hour of our death. Amen.   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. Lead us not into temptation, but deliver us from evil. Amen


September 10, 2015   Archer Update 9-7-15 to 9-10-15 DAY 34-36, Day 5-7 at Shepherd Tuesday-Wednesday-Thursday Family & Friends Update Come to the shepherd   I should start by telling you that the delicate surgery for Archer’s sinuses had been postponed the last two days while they did a bedside scope and explored other bacteria that had come up in the cultures and they wanted some time to looking at the various antibiotic responses before finalizing the go on surgery since better not to have it if we can avoid it. But it’s on now. Both cavities near the brain are full of stuff that needs to be removed. Friday 5pm at Piedmont Hospital. As I write in the wee hours of today, I guess that means tomorrow. So, to all of Archer’s Army, armed with prayer and focused intention and gratitude and love, you know what we need tomorrow, Friday at 5pm EST. Storm Heaven! God hears you, every single one of you. You are as precious to him as Archer is.   I awoke in the dawn with the thought very prominent: Pay close attention to his (Archer’s) number. I knew it was the Holy Spirit, but I am not sure what it means, but will pay attention.   Early this morning, when Archer’s pulmonologist came in for his round, we discussed Archer’s panicky experiences a number of times yesterday and again this early morning of not being able to breathe and wanting more oxygen. The staff here always now kindly automatically bump the oxygen up to 100% temporarily once I figured out that’s what Archer wanted, whether he really needs it or not, it gives him comfort. No matter to me the reason. We’ll just make sure it happens. Medically, the bump is not necessary because his oxygen saturation rate remains fairly high even throughout the episodes, but the signals in the brain from the body and vice versa tell him, You can’t breathe. I will rejoice when he no longer desperately gulps for air as the techs work to deep suction the mucous in his respiratory system. And, last night when the ventilator cap flew off his trachetomy, and we both awakened to the huge wind woosh sound and the gurgling of his mucous in the tube, the techs came back in to help bring order to the situation. I just prayed to Mary. I saw her and felt her arms around Archer. I knew she was really there, she’s always there. And we felt it. And Archer calmed down. Thank you Lord God for always being with us. Always in the room, always there. We just have to call you.   These episodes are really ghastly to have to watch Archer writhe and plead the silent loud scream, Maaa, help me! as his eyes seem to leap out of his head pleading for us to do something. I run to get the respiratory therapist for O2, they then begin the deep suctioning process. It is grueling to watch our lionhearted son have those painful suctioning out experiences, which he even asks for knowing how hard they are and he has them go down in the trach to get stuff out until it begins to bring up a tinge of blood which signals no more. Archer works hard in tandem with the respiratory therapist who threads 12 inches of tubing down his trache into his lungs to try to rat out the secretion buildup which he is not able to expel in the way you or I can with a simple cough or eh eh simple throat clearing. Oh Lord and prayer warriors, pause now to thank God for the simple ability we have to cough and clear our throats which Archer doesn’t have. Thank you, dear Lord for that ability that gives us ease and freedom of movement. Since Archer knows that feeling (and will again), he gets panicky when he can’t clear something rattling deep in his lungs, and has the compounded experience of not (yet) being able to do any deep breathing because his diaphragm is not (yet) innervated to give him that capacity. The pulmonologist added a slight bit more pressure moving the PSV setting from 20 to 25. Archer says it helps. That is good.   Even with a bit higher temperature to 100 and a bit colder down to 98 yesterday alternating between chills in need of a thin warmed blanket around his head, shoulders and body temporarily, and then taking everything off once he was warmed, at his request (isn’t that awesome: at his request!), his temperature is monitored closely and we catch the rise and fall when they are but small butterfly movements before they become big swings, and even with the usual wake ups for meds and the regular 3 hour turnings for which we are so grateful to prevent skin breakdown, Archer had another good night of rest. Yeah and thank you, dear God. That makes 3 nights in a row with about 6 hours each of sleep, interrupted of course, but learning how to go back to…at least rest if not sleep. This is very good. These are true improvements. And, I feel it myself. It’s only 6:11am and the day is up and on and we have the Frimm Framm on this morning as I said to Archer, We are feeling light and lively today!   The biggest issues have been respiratory and ongoing pain management. The lungs are good but the respiratory system is labored and hard. His number one PT goal is to be able to breathe.   Re his ongoing pain, I am certain that all Archer has done physically and emotionally in the last two days has aided in his sleep which has helped with pain reduction (what a gift sleep is), but we also continue to try different pain combinations. I asked yesterday about acupressure which has relieved his pain from a 7-8 to a 4 in minutes, but he reports swinging back to 7 in just 15-20 minutes. So that did not seem realistic to his team to rely on, actually, not practical. But I asked last night if we could all sleep on it and revisit it tomorrow. I asked about acupuncture and reflexology and other alternatives, all of which modes I have personally received benefit for health and well-being and believe Archer can too for well-being and probably pain management too even if for instance he has no feeling (yet) in his feet or hands surely the body knows.   So before I tell you about the amazing things Archer was doing yesterday despite and through his pain, I want to tell you what just happened as I write. (note: it I now 9:12am and where did the last 3 hours go: with techs, he is now being bathed by loving hands very open and willing to use the soothing peppermint lotion I have for his feet to enliven the skin, thanks to a Cape May angel, the loofah and skin repair oil I have for his needle marks and surgical scars, thanks to my namesake, and the other essential oils I know are good for healing like lavender and jasmine and peppermint and for his lungs, rosemary, and the amethyst I have that is good for his heart and all these treasures from nature used under the watchful eyes of the blessed mother miraculous medallion medal I transferred to this bed and another on his trach case now. They are but symbols but very powerful of the reminder of the majesty of God’s love and grace.)   So, this is what just happened. His occupational therapist just left but came in to show me what she lovingly did to the hand splints she made yesterday that I had noticed were a bit rough around the edges where the strong scissors had cut the amazing new fangled now hardened plastic but had been wax-like mold around his hands for his hand splints. She came in to show how she had covered those edges with mole skin. God bless her. I gently rubbed the soft edges on Archer’s cheeks so he could know that is what will be on his hands. But it’s what she then said that is amazing.   She says, Don’t ask me why, but I woke up at 4:30am this morning with Archer on my mind. I have an idea for his pain management. It’s tens. You spell it T.E.N.S; I know you will research it. It’s a general low frequency kind of buzzing that we could apply to his body to stimulate and move pain around. And I also had the idea of Dolphin. You understood trigger points right? Yes, I said, So, what is Dolphin? It’s a neurostimulator that is a very pin pointed electrical impulse that breaks up the trigger points. We don’t do the other things you asked about but I thought we could do these. Would you be open to either of these?   I began with, Thank you. She turned to Archer and said, Look, I’m thinking overtime on you, buddy. I said, Thank you for that and also thank you for waking up at 4:30am and listening. We would say that is the Holy Spirit talking to you. And we are very open and always listening for that. She paused and said, I can believe that. In response to what she was offering, I turned to Archer and said, It doesn’t have to be a total replacement of pain meds. But we can widen our methods and you never know. Especially if it’s going to be a little while with this pain, let’s find methods that work that are not all about narcotics and meds. What do you think? Archer gave one of his thoughtful looks that he does with his lips when he is assenting to something with the sentiment of, OK, why not. So, I said to our OT, There you have it. Let’s try it.   Ok, now it’s 11:27am and I’ve seen 2 more hospital admin, a brief visitor from a kind person in Atlanta, learned about vinegar soaks which I am doing for Archer’s hands and feet that are shedding skin like you can’t imagine. I asked about the scalyness and what could be done a few days ago. The tech’s baths are good but a sponge bath is not the same as a shower or a bath in a tub, so they told me I could put a vinegar wrap around his hands. Tried. Good but not enough. But just now, voila! We soaked each hand in vinegar about 10-15 minutes and gently exfoliated the dead skin. I’d highly recommend it for all athletes and gardeners and construction workers. Archer’s hands look awesome! Now, his feet!   Oh my, now it’s 1:49pm. So, let me tell you about the MILESTONES from yesterday. Oh my gosh, where to start. It’s amazing. I entered about 8am yesterday morning, and what to my wandering eyes should appear but Archer and his tiny reindeer all moving him in the Guldman lift, without the same wretching pain of the day before’s hoist. What is the Guldman lift…. Well, they begin by arranging a fabric sailcloth sling under Archer’s body in his hospital bed. It takes 2-3 folks to roll him to his side for placement of the fabric under that side of his body while someone else holds him while someone else moves the various lines attached to his body gently aside and out of the way of the large pulley that is the Guldman lift. The lift is like a pressing bar dangling from a strong chain like a pulley that slides on large tracks, like huge industrial track lighting, mounted on the ceiling forming a large box frame around the ceiling above the bed, with each of the four lengths about 12 feet or so in length. Then the medical staff put the sling in place for the other side of his body. This used to cause him great pain to be rolled onto a side when we were in Atlantic City, it does not so much any more so we know he his healing and getting stronger. They then put a hook in the corners of the cloth that is like a big swing and he is then hoisted up on this bar and pulley over his bed and into the wheelchair. All the while someone else holds his neck steady. I know he is very afraid something might happen to harm his neck in the brace. The brace is there to protect but even so. The move from the bed to the chair is key and vital really to Archer building endurance and having his body work again. Staying in a bed really stiffens the body, atrophies the elasticity and musculature and slows down the organs from doing what they were designed to do. Plus it creates the dreaded bed sores. But the hoist has caused Archer a lot of pain in the last three days he has been in it. Dewey created a If There is No Stuggle, There is No Progress sign for Archer which we have on the wall for him to see. So, yesterday when I came in, one of the techs was saying to Archer in a very encouraging, bordering on exhuberance, tone, Archer, you’re doing better today! See, your neck is stronger! He looked at her and was clearly still in great pain. I could tell she was almost embarrassed as she then began, Well, you know… I think she was about to amend and possibly retract her statement of encouragement just as Archer was lowered into his electric wheelchair. I caught her midsentence and said, Please, tell us that everyday. Tell us his neck is getting stronger every day. And, from one mama to another, you can at least tell me he is improving and stronger. I smiled and said to her, Promise me? She brightened and the pearly white smile spread across her dark brown face. She said, Oh yes, I see. I got it. And we exchanged knowing smiles. Archer remained in the chair for 6.5 hours. Wow! That is huge. It is really huge. What a day yesterday was!   Ok, next: his Occupational Therapist (OT) came and began to shape the customized hand splints I mentioned. How cool is that?! Even without arm or hand ability (yet), Archer does have bicep ability, so she fashioned arm splints that he will practice with with very focused lifting using his biceps (he’s going to be truly Archer Strong!) with the goal that he will be able to put a fork or stylus in a piece of Velcro we will attach around the splint that he can use for eating and for….his iphone! Look out, Archer’s friends, he will soon be on FB or snap chat or whatever it is he is able to figure out with a stylus. I say give him a week to get the ability and strength to use his bicep to lift the rest of his arm. Pretty cool!   And as for Archer the artist, a dear friend at MICA, the Maryland Institute College of Art, where Archer used to go as a child to watch students paint, said we will figure it out. I feel so hopeful for him. It might be a feather brush in his mouth to have the kind of precision, accuracy and detail that we know Archer likes, but he will draw and paint again, I feel sure. Isn’t it amazing even without the use of his arms and hands (for now) that he may accomplish many things.   The OT also wheeled in another contraption, a Swedish sling, that is like a human sized mobile, something you’d see hanging from the ceiling in a Smithsonian museum. It had lots of soft leather arm sleeves balancing on thin smooth bobbling metal wirelike pieces of steel. She worked to place Archer’s heavy floppy arms through the arm bands and he was like a marionette puppet and it looked like it could be wonderful for a feeling of movement again, but it caused him incredible pain so we stropped it immediately. It will wait. So much good though and so exciting these things they have here and can wheel in and out in a NY minute depending on the need.   Then, it was Mirror, mirror on the Wall as his Physical Therapist (PT) came and worked with him using a another wheeled in item, this time a large floor length mirror like you’d see in a department store. He was teaching Archer about his alignment and showing him what to look for to take care of himself because others may forget or not know how it’s critically important to always have his hips centered and squared in the chair, never slumped, and his knees always the same laterally across, never one in front of the other, even slightly, while in the wheel chair as that throws his alignment off and will cause pain and possible skin lesions. He showed us a number of small tiny things, what I just call little butterfly adjustments, that make such a world of difference to Archer’s comfort, progress and recovery.   As the PT was working on other things for Arch, Archer stared at himself in front of the mirror. I think he looked quietly and intensely for 45 minutes or so at himself. He did not change his serious countenance once. I could tell he was calculating and watching. He was studying. I know him well. It was a first for him to see himself I realized too. I wonder what he was thinking. It must have been quite a sight, his now thin spindly legs wrapped in blood pressure stockings wrapped in ace bandages for further support, his hair longer and a bit wild looking now that it is free and clean, the neck brace, the tracheotomy and the large ventilator tubes hooked to the large machine, the four fluid lines into his body, the three different sip and puff stiff plastic straws sensitive to any motion on wire coils clipped to the sides of his wheelchair taking up space in front of his face, the straps around his chest and midbody to keep him from sliding out of the chair, his arms at rest but also strapped into the side arm trays of the wheelchair (we took the hand splints off after I noticed the edges were a little rough and maybe starting to create pressure points which the OT asked me to be on the look out for, so we removed them for now to see which of the reddish points on his hands that we saw might be from too much pressure or skin friction from the splints which will go away today and which are old reddish points from the many many needle pricks and spots not yet healed or in the process of scarring from the many draws of blood spots which are not likely to go away (today). They are very careful and methodical here at Shepherd. I like that.   Then, there was an afternoon of food. Food glorious food, hot sausage and mustard and …Well, not exactly that, but Archer had food for the first time in 37 days! It was awesome! And while it was a small taste of a few things and nothing more that that, the other milestone that had to happen and did yesterday is that he passed his swallow test.   He passed his swallow test! This is big. This is important. Those 2-5 sips of water no more than once every hour or so from a straw which he has been practicing and has been focused and determined to get right by reducing the many swallows of one sip of water down to just one swallow, truly strengthened his swallowing ability. So much so that the speech therapist came in and said, Are you hungry?   I about fell over. It was totally unexpected. So things are happening fast! (May we pause and celebrate the miracle of the human body and the miracle of the Prayer Warriors all praying in concert!)   She said to Archer, What is your favorite food? (I honestly thought it was a question intended to be hyperbolic, but she was totally serious)…Anything, she told Archer. Anything. I will get you anything today and over the next couple of days. It was such a beautiful moment. Archer really brightened, I mean after all, we all know what an amazing cook he is, and he loves all kinds of food, and probably will love food he’s never tasted, and here was offered, Anything.   He paused, really smiled, paused again in thought and then said….. French toast. She said, OK, I’m going to get you some French toast, and I’m going to make it myself tomorrow at my house since I don’t come in until afternoons, and I can’t get it today because the cafeteria is now doing lunch. But tomorrow, French toast it is. And she continued, How do you like it? with butter? Syrup? Powdered sugar? (maple syrup) Do you like sausage? bacon? (bacon) How do you like your bacon? Crispy, chewey, soft? (crispy) It was amazing. They got the breakfast menu for tomorrow (today) down. Then she said, Tell me other things you like.   I was waiting and there it was: Orange Juice. She said, OK. How about if we go for it and I get you an orange right now? He was really brightened. It was so fun. She left and was back shortly thereafter with a tray full of food: tortellini, with a choice of marinara or cream white sauce (Archer chose marinara); banana pudding with cookie crunches throughout and whipped cream, chocolate pudding, potato chips, an orange which she peeled, and cranberry juice. He tried each, but just a tiny spoon’s worth. As he mulled each piece in his mouth, he was very careful about his swallowing. I could tell it was not easy and I know Archer. He will be cautious and circumspect until he knows it’s not going to cause harm. His smell is off and the taste not so good, and she warned him of that, but the experience as a whole was glorious, and glorious that he could swallow.   They have his feeding tube to 2400 calories now, amazing considering we started at 240 per day. It’s been at 1500 for a number of weeks. So, now some real food will begin. As he took a very small bite of each, she offered more. Nothing more, he mouthed and smiled. He didn’t want more. He is on the path! Bon appétit!   Turns out Archer was also very wise in choosing the smallest of portions, all that AP Chemistry matters! Even with like half a spoon full of what she brought, he experienced gas bubbles and tried to burp many times in the evening. It was a bit distressing to him because he had the sensation of wanting to burp but not having the ability to do so because he doesn’t have the innervation to the musculature in his diaphragm to burp. He really worked on it a few times in the night. The nurse would open one of the vent tubes in his stomach, literally taking a cap off a tube, and out would poot an air bubble or two. Amazing. I think it’s pretty exciting that he can feel these things in his internal organs. His arms and legs will follow I just know.   Alana Shepherd came to see him and we took a picture as he was quite happy having just having had his first meal. He smiled for the picture. It was very genuine. I could also see in his eyes that he almost had, no, I think he really had, love for her for starting this amazing place.   All of yesterday was so huge. It’s probably worth sharing with you that prior to yesterday, Archer had smiled very little, only just here and there when asked by a staff member and a couple times when Dad and I were here. My not seeing him smile spontaneously was concerning me as we all know Archer, but I also know the excruciating pain he is now reporting which is what them looking at the whole C spine and his head in different CT scans. When asked to describe his pain, up until yesterday, the only thing he had ever offered by way of explanation is that it is a constant 7-8 on a scale of 1-10, All over. He would then reference his shoulders and the back of his neck down his back and wince. But Tuesday, he was able to tell us more. As the OT worked on his back, he closed his eyes to find the words. Then he said, Searing hot, like a dagger in my back and under my shoulder blades.   There was a moment of silence at hearing those words. There she was working hard with him and used to seeing results, she said, she had no desire to cause him pain like this. We told him no one wants him in pain or in more pain. And, I told him if it’s true that he’s really a 7-8 most of the day, we will really need to look into a variety of other things as he doesn’t want to be on narcotics like morphine for very long. So, we had some information to work with. The OT and I talked about acupressure and she did some on Archer’s neck and shoulders, finding the trigger points and as tender as it was, his pain rating of 8 went to 4. It then went back to 6-7 he said, but the 4 experience was huge. I said, Arch that is huge.   It was huge because it opened Archer’s eyes and experience to see how the body can respond to touch and how certain movement and pressure can bring relief. My and probably his too concern about future dependency on pain killers aside, more importantly for him, I think his experience with the acupressure instilled Hope. Hope that there are non pharma methods and alternative methods that feel good, that do not alter his alertness and that can give a reprieve to his pain. Hope that he will not be in this pain forever. Just plain ol’ Hope: That marvelous emotion we feel when God fills our souls with his love, and we drink it in. Archer tasted it in a very real way. And it was very sweet.   So, Archer’s increasing reports of pain and requests for more pain meds now have a new reprieve, albeit not long lived as his pain returned shortly thereafter, but that’s ok. I’ve got to tell you a funny thing in the midst of this. At one moment on Tuesday when it seemed like he was not in as much pain, I checked in with him. For those of you who know Archer, he can be stoic about pain, both emotional and physical, and can be very serene and rather cerebral about such things almost as if in contemplation, and it’s this serious demeanor that I have seen the most the last few days without any punctuation of the witty and clever and funny side of Archer that we are used to seeing and thought surely might begin to emerge now that we were here at Shepherd. We had a glimpse of it on Day 3 here when Billy arrived with a couple boxes of stuff from the prior hospital stay for Archer’s room. Archer mouthed, Been shopping? What’d ya get? We both tried to figure out what the heck Archer was saying; we knew it was funny because of the expression on Archer’s face. He must have said that line 5 times before we got it. Billy got it first and then didn’t miss a beat with him and fell right into the old Monty Python skit he and Arch have said dozens of times to each other over the years Billy: A piston engine. Archer mouthed: How’d you cook it? Billy: You don’t cook it… you boil it!   And we all cracked up. It was a wonderful moment. Little glimmers of our lionhearted boy with the wonderful sense of humor. But it had subsequently been about three days of no sleep and a lot of pain. And while we know Archer has benefitted so much from the soothing healing sanctuary created in both of his hospital rooms with the orchids and bamboo plants, lavender and peppermint oils, and the soothing spiritual waterwalls pandora sound track and the Deuter music Billy found, Archer has been very serene these last few days on the whole. He asks for the soft music, told me he prefers it (at least for now). He watched Tom Hanks in Shipwrecked, the US Tennis Open and Rocky but largely seemed disinterested and asked for the sound to be turned off and the soft music put back on. Loud sounds are just hard on pain and get in the way of healing. By the way, Archer made the choices on the TV with a sip and puff stick in his mouth hooked to a TV monitor on a tentacle which can be moved anywhere around his bed or chair.   I said, Hey, Arch, I haven’t seen you smile in awhile and I really need an Archer smile. He looked at me almost vacantly and looked down giving me the impression he was distant and far away with that disconnected look. The kind of eyes that could cut you to the quick if you didn’t understand that that kind of look comes from pain or exhaustion. But rather than feeling discouraged (or rejected), I stayed rooted and waited patiently to see if he might turn toward me and reconsider. I was so hoping he might. It flashed to me that he is 17. Teenagers do all kinds of stuff that can hurt their parents’ feelings.   I remained standing by his side quietly sort of holding the space for the possibility of a connection. What happened took me by surprise.   Archer raised his eyes, looked right at me and then up went his right eye brow and up went the side of his mouth with an exaggerated curled lip, and he snarled at me! Just like a Walt Disney pirate! Sure, enough, just like always, it made me laugh. Archer can be so funny. That scary but funny pirate snarl that he’s known for and done to me and his siblings when we are all together in the kitchen and we just crack up. It’s exactly, I mean exactly the same look his great gramma Lily would give to him and the other great grand children when they were very little when we would visit her in Illinois and when any of them had fallen or gotten a boo boo or were crying a little. Every time, Grams would do that same pirate face which was always so unexpected that it would disrupt the cry of the child on its way to wind up and would bring each of my then very young children to laughter, and any and all crying would cease. That was what Archer was doing for me in that moment. Oh, it felt so good to laugh. And then he smiled. And it was a really good one, a big smile, a big natural beautiful smile. Isn’t that amazing amidst so much pain.   We will rejoice the day when Archer’s pain rating is below 4. As I write to you, I thank God this moment for the ability to be pain free and to move about freely. Please thank God in his moment for your ability to move about freely. Just notice what you are doing right now. Reading, scrolling. Pain free. It’s a real gift.   And we will rejoice the day when Archer no longer is awakened or disturbed by the rush of the real physical sensation of not being able to breathe that causes him (at least for today) to panic as every fiber in his feeling body sends signals of, I can’t breathe!   So, I better sign off now. Notice right now how you are breathing effortlessly. I notice how effortlessly I am breathing. It’s so easy. Drink in that ease. Feel it in your chest, your shoulders, your elbows, your hands, your fingers. Now feel how wonderful this is in your heart. It’s really really wonderful. Life. Breath. Take a breath and feel that gratitude in your heart. You can breathe. You can write. You can carry something. You can carry someone. You can put your arms around someone. Remember this feeling of simple and complete gratitude you have right now in this moment that you can move like that and breathe all the way through with such grace. Yes. It is so wonderful. We have such amazing and splendid bodies. I bet you just smiled thinking about it. Please incorporate that joyous feeling that includes your beautiful smile, into your prayer for Archer in this moment for his freedom of breath and freedom of movement. And for anyone else you know who is restricted in breath or movement. Pray for a reprieve of respiratory pain. Let’s create that force field together for Archer today, tonight, tomorrow.   A wise person told me there will be many bumps along the way in Archer’s journey, but that something good will come of this. I believe that.   Something good is already coming of this. Your prayers are creating this amazing energy field that is holding Archer and bringing him healing energy and love and strength, all through the grace of God and the blessed mother Mary and all the saints. I have asked Archer if he feels it. He nods that he does. He knows God is listening. Thank you for Archer Strong. He is really fighting and fighting with believing and not giving up. And look at the rewards of yesterday and today!   These respiratory episodes and the sinus surgery tomorrow at 5pm are just bumps. There will be other anticipated but not yet known bumps to come…. We can do it! They do not seem as scary now. In fact, they are minor compared to what Miracles God is working on.   I am firmly knowing that a Creative Miracle is in the making. It’s happening. And it’s happening right now. It’s happening because of the sustained prayers. God is hearing you, and collectively we are all together the instruments for God’s wonder and splendor, and we will see miraculous things. I know it. Thank you so very much for believing this. We are believers. And I might believe it more than you do at times, and you might believe it more than we do on some days and so it will go. We will inspire each other. We really are all in this together. We are. We need each other.   God needs us more. And we need God more than that.   Thank you, Angels and Prayer Warriors. We are winning this battle.   Oh, I have to tell you one more thing that just came to mind.   Yesterday, our young Patient Care Technician as she was checking in on Archer began telling me how she’s working three jobs and going to school and how hard it is. As I listened, she went on that her dad is a machinist and works in this really crummy place. She told me at least three times how smart her dad is, and she wistfully added at one point that her brother got all the brains. She went on to say she’s trying really hard. And she said again, It’s just hard. I said, Yes, it’s just hard. I noticed a necklace she was wearing with a silver arrow, horizontal on the chain. I told her, I like your necklace… It’s… like an archer.   She looked at me, thinking, as she reached up to finger the long slim silver arrow on the chain around her neck. She began, Yeah…like an archer? Well, I wear it because it reminds me that I’m moving forward with my life. I said, Yes, that’s good. And I asked her, So, are you pointed in the right direction? She said, I hope so. It’s just hard… Then she said, …Like an archer?……I guess in order to move forward you’ve got to be pulled back. Hmm, I replied, I guess you do… Yes, I think you’re right. And we smiled with each other this beautiful young woman working so hard to become a professional. Isn’t that so good. Let’s say a prayer for her too and for all the young people working so hard to move in the right direction.   Sending love, Amen.   PS: 5pm Friday tomorrow, sinus surgery PPS: 5pm Saturday, September 12 Mass for Archer at the Cathedral of Mary Our Queen, Baltimore IMG_0020


September 7, 2015 September 7, 2015 DAY 34, Day 5 Shepherd Monday Friends & Family Update   I hope you will have a wonderful Labor Day weekend as Archer and I feel the quietude of the unit today and welcome the reprieve related to it being a holiday weekend. It’s a little sad for me as this weekend is always a special one for our whole family that no matter who is going where or doing what, everyone comes to Cape May for Labor Day. It’s where we take our annual Christmas card photo somewhere on the beach. But that picture will just have to wait this year. None of our children went to CM this weekend. Of course nor did we. They are all scattered. That makes me sad but the last month has been trying for everyone.   Archer seems very melancholic today. I am concerned. I am watching him closely.   Archer is also in a lot of pain. We’re having some trouble managing it. Have tried a lot of things. They all work but he remains in a steady 4 or 5 on a scale of 10 even with medication, even with morphine. One surgeon who visited said it’s a feeling like a knife just cut your back or your throat. Oh my God, I could feel wobbly again for him.   The ENT surgeon visited tonight. He wants to do the sinus surgery tomorrow or Wednesday. Should be done soon he said. There is what he showed me on the CT scan, a lot of pus. A whole lot. We don’t want any brain abcess or meningitis. Ok. Got the picture. Another big effort. Yes, a little scary. Yes, temperature on the rise to 101. Yes, we need your prayers for the surgeon’s hands to have angels guide his fingers skillfully as they perform the delicate surgery in the next day or so.   When will it end?   Earlier today, I saw Archer’s cheeks quiver. I went to him and asked him if he were OK. I could tell he was not. Wetness then began at the corners of his eyes. I have been waiting for this moment, wondering if it would ever come, wondering if we ever wanted it to come. I tried to hold him with all the tubes and leads all over him and the three wands close to his mouth for survival. He was in his wheelchair tilted back. He mouthed through the tears he was trying to choke back and looked at me almost desperately, It is so hard. I said, Yes, my darling, it is so hard. I asked gently, Are you sad? He nodded, Yes. I said, I know. I am so sad too. We both began to cry and cried together and I know I broke my cardinal rule to not cry in front of Archer as I don’t want him to lose hope. But I did. But just for a moment. I told Archer it’s ok to cry and it’s good. He did a bit more. I said God does not want him to suffer, we don’t want him to suffer, but all the emotions are God given and it’s ok to experience them all. He mouthed, I am so sad. I said, Yes. I am sure you are so sad. I said, I love you so much. He nodded. I said Dad loves you so much. He nodded. I said we are always going to be here to support you whatever the future holds. He nodded and began to cry a little more. I said your brothers and sister love you so much. He nodded. They will always be here for you. He nodded. And your friends love you so much. Pause. They will always be here for you too. He didn’t nod. I said you will have new friends and you will have the old as well. The ones who love you will always be there. And there will be some who are not there but that’s ok because there will be new ones who love you and many old ones who always will. He looked contorted in pain and sadness. He mouthed again, It’s just hard. I asked, What is it that is most hard? He mouthed, Breathing, as he winced. He then mouthed, Pain… Not knowing.   Please pray for Archer that his searing pain in his neck and shoulders will abate and that he will be sustained in the not knowing and will not lose hope. Amen.


September 6, 2015 9-6-15 DAY 33, Day 4 at Shepherd Sunday Family & Friends Update I have heard from some of you in the most kind and intimate of messages. Thank you for that. Your unexplained urges to pray for Archer in the middle of the night or to awake with him on your mind in the early morning or to think of him during the routine of your days are surely God’s whisper that Archer needs God’s believers storming heaven again, especially the last couple days here. The transport was hard on him despite the gentle and expert caregivers. And we know those prayers and God’s answers to those prayers sustained Archer then and in the turnaround we are witnessing now, Steady but sure. The early dawn pushed through our blinds. Did you sleep last night? We had had stretches of silence in the darkness between the turnings and meds and xrays. I had hoped he had been sleeping. He mouthed, Can’t sleep. It’s been three nights here and he hasn’t slept much at all. Our nurse came in and asked if he slept. He again mouthed, I can’t sleep. She said, That sleeping aid didn’t work? He nodded in the negative. Archer really looked defeated. After she left, I whispered to Archer as I noticed the rings around his eyes getting darker, Darling, we’re going to figure this out so you can sleep. And…you may think you can’t sleep, but you can. You can rest even if you don’t sleep. Your body knows how to rest and wants to rest. And, when you rest, you find peace. He smiled. I told him it’s all in our minds. It’s your mind that keeps you from sleeping. And just as it keeps you awake, it can lull you sleep. It’s a beautiful thing. So much of what we think we can’t do is in our minds. We limit ourselves a lot by that kind of thinking. We can do and feel whatever we tell ourselves. Our minds are very powerful. I shared with him that when I think I can’t sleep either in these hospital rooms because of all the beeps and interruptions or because of what is on my mind, I tell myself I can rest. And then I close my eyes and incorporate into my thinking all the things fighting me and making me anxious, and I welcome them in, and breathe with them and through them and incorporate them into my breath. And I feel peaceful. And even if I don’t sleep, I can still find rest. And I also shared that sometimes I forget to do this and find myself exhausted and not at my best. But when I remember, and we can remember together, it brings peace. It truly does. He smiled. He asked me if I’d talk him through it. We closed our eyes together and did this focus for a little while. He seemed contented. I told him we could do it together daily if he wanted. It will be good for both of us. He then slept a bit. During the resting, the rounds started, not as vigorous as during the week since it’s a weekend, and a holiday weekend at that. But the docs came by and told us Archer’s white cell count went from 6 to 10 and now is 18 and on the rise. His main doc was checking for why and ruling things out. Archer doesn’t have a fever. (New definition of fever, not below 97 or above 100 as it is the new norm that Archer will swing between those temperatures since his sympathetic system and parasympathetic systems are not working with each other as ours does due to the damage to the spinal cord; e.g. he doesn’t perspire anymore below his shoulders and so his body does not cool itself off as well it did before.) Another hour went by with more blood work and cultures taken. I have always been very willing to allow Archer to be silent as I think he and God are working this out and need the time to do so without interruption. But it seemed he was more and more labored. As more time went by, I asked Archer how it was going. He opened his eyes and mouthed, I can’t breathe. Get Jewel. I left immediately to find her. Jewel is the respiratory therapist who has been at her work at Shepherd for 40 years. She is a large brown skinned earthy woman whom Archer likes very much, assured by her manner and her care and her expertise. She tells him exactly what she’s doing in the most down to earth and encouraging way. She knows. When Jewel entered, Archer mouthed for her to do one of the ventilator deep lung suctions, ones he has had therapists and nurses do all day and night long since the ventilator was put on in AC. Each suction forces Archer to gag and writhe as he tries so hard to get the mucous up and out of his lungs that is being pulled out by a smaller tube the respiratory therapist threads down his throat to suction it out, hoping that more has been dislodged and loosened by the turnings. We are hoping for a time when fewer and fewer of these suctions will be needed because Archer’s capacity will get stronger to clear the secretions himself and the secretions will not be so thick. Then, Archer may get off this vent. That’s a prayer unto itself. As Jewel threaded the tube down Archer’s trache opening into his lungs, she could tell there was a plug in the left shoulder area and she said to Archer, I feel it. I feel it. Hang in there, baby. We’re going to get that plug out. No wonder you can’t breathe. You can’t but you will soon. And she and Archer worked hard through contortions and Archer’s left arm spastically bouncing up and out in reaction to the involuntary movement of his shoulders to the deep lung suctioning. She got it. She said it was so thick it could hardly pass through the tube. And she held up the jar and tube to show me this awful looking almost rubbery stuff dangling from the tube still not dropping into the jar.   They really know what they’re doing here.   A few hours later, Archer told me he couldn’t breathe again and to get Jewel. She came waddling back into the room and said, Yeah, baby, I know. It’s another plug. Hang on. I could tell it’d be back because we couldn’t get it all before. Hang on. We’re going to get it all now. You ready? And they did, and it was quite a sight. I took a picture to show Archer so he knows the labor of his efforts is not in vain.   His chest x-rays show some mucous but no pnuemothorax. Yeah! They will clamp the remaining chest tube today and take it out tomorrow. Lungs should no longer be a problem now. Good work, prayer warriors. Archer’s Army may rest, but probably not for long.   Billy arrived and brought in the couple boxes of things we will need for our sojourn here and in came more cards from home that you had left in our foyer for Archer. We are so grateful. Archer so looks forward to them and really needs them. Please please keep sending. You can send directly to him:   Archer Senft c/o Shepherd Center 2020 Peachtree Road Atlanta, GA 30309   I just love their address too: 2020. Yep, that’s the clarity we seek. 2020.   Our doc ordered a CT of the head thinking the high white count might be sinus even though Archer has no indication with nasal drip or anything like that. He was accurate. The CT showed Archer indeed has infection in both lobes of his sinuses deep down in the boney area where the antibiotic is not effective unless they have a sample to know which antibiotic would attack it. I looked back in my medical journal and it’s weird because I asked in AC if they looked at Archer’s ears and olfactory system with a scan as I was concerned about his titanium in his ear, whether he had had a concussion and also concerned about his increasing loss of smell. I was told that there was a brain scan and that it was normal and that trauma treats the injury and the ear and nose are not part of it. It’s ok but I just wonder if we would have picked it up then. I try to listen to my intuition and act on it. I asked but I didn’t push. I wish I had. It’s been so complicated. I am reminded at so many turns of the impact of Archer’s drowning or near drowning and taking in sea water and all the many things he’s experienced that would make it hard for any team not specialized in Spinal cord injuries to know exactly what is going on. And I am also thinking about all the time he spent in a bed lying down, about a month, that’s a long time. Here it feels as if they are looking at everything, and it’s all geared to get him up and moving. So another broad spectrum antibiotic was ordered to hold the infection at bay as we are awaiting the otolaryngologists surgeon’s recommendation. The area where the infection is pocketed is separated from the brain by bone but very thin bone about the width of a piece of paper. We will keep you apprised, dear prayer warriors, and Archer’s Army will storm heaven again. I do not want to worry as worry gets us nowhere. But I am a little worried.   And while this is another setback, it is also a step forward to getting him whole for the rehab journey. And we believe, we really believe, that all the prayers of all the believers have brought all the angels and graces to Archer’s bedside and probably spared Archer what may have otherwise happened: death at so many turns. And the prayers have surely given him the strength to endure. Isn’t that what we are really in need of in our tough times and our dark moments? The strength and courage to endure and be sustained as the darkness unfolds into light again.   I recall what Frank Pugh, one of our mediators, deceased at 80, God rest his soul, would tell me every year when I sent out my annual email to our team expressing my gratitude for each one of them and for the bounty we have and the good work we are privileged to do and the holiday we were all celebrating with family wherever we were, which for our family was always in our beloved Cape May. And each year, Frank would call me later in the day and say thank you and remind me that we can also always be grateful for what we were spared that we will never know. I always loved that and marveled at that. And I loved that every year I could expect that call from Frank who would tell me that sweet piece of information as if for the first time and I would take it in and wonder at it as if hearing it for the first time, each time. God is so good and his army is so good at protecting, and it’s surely true that our guardian angels often work over time.   And there it was, serendipitous but not surprising any more as it seems it’s more about synchronicity these days, that I opened the card from the group Billy had brought from Baltimore. The sentiment on the front of the card read, “May there always be an angel by your side.”   May there always be an angel by your side. Yes. And I recognized that card as we have that same but different card on our bulletin board in our Baltimore kitchen. I loved it when I first saw it a few years ago. As I sat on the pull out chair bed, I showed Billy the card. He gave me a sweet but sad smile. In the last many weeks and again today as we sit together with Archer, Billy and I have wondered about these things, angels and guardian angels and such. In our private wonderings, Billy has shared with me that he imagined that Archer’s guardian angel, who we know loves him so very much, must be so pained, so very pained to have stepped aside. As pained to have stepped aside as we are heartbroken. Imagine that angel’s agony in that moment, a moment that could have been so different, as Archer dove in to take as he told me the night after the surgery a quick dip in the ocean to cool off because the kitchen at work was so hot. A quick dip. Painful. I suppose his guardian angel did save him though from drowning. That it happened seemed unimaginable a few weeks ago, but it is very real now.   But for us, we really don’t question the why so much as we wonder the what, what is it, good Lord, this is to bring? We believe it will bring good. It must bring good. A wise priest told a dear friend of ours that Much good will come of this. We pray for that. Please pray with us for that.   We know there is meaning in all human suffering, and that God doesn’t want us to suffer and did not breathe divine life into us so that we would suffer. We also know and accept that suffering is part of our human condition. We all suffer. We also believe that is why God gave us life eternal so that we can endure our human sufferings. After all isn’t that why God sent us his only son who suffered mercilessly and then forgave us? So when I am experiencing the acute sharp sadness that is stained at moments with desperation, I tell myself it’s ok to feel it so I can remind myself of my humanity and how much I need God, so I can then move through it with my aliveness and find relief and comfort from those who help me ameliorate it with compassion and kindness. That’s all of you who are doing that for me and for our family and for Archer, in ways that perhaps he knows best in his deepest meditative state. I’ve watched Archer in that deep state. It’s a reason for keeping his room as best we can with minimal loud voices and piercing beeps for extended periods, noisy electronics and harsh sound of TV and commercials. He needs to be able to find that state where I believe he is working it out with God.   Billy and I need to work it out too but with each other. In our short day and a half together when all Billy and I wanted to do was fall into each other’s arms for support even if just for a brief moment, instead, we realized Archer’s heightened anxiety about the different CT scans, his pain on the rise, and wanting one of us in the room with him at all times. Not what we expected once we got here but totally understandable. So we decided to divide and conquer once again. Our thinking we could go to Mass together and have a meal was not in the plan. And, as Archer was wheeled away for another CT scan this time to look at his full C-spine to try to figure out why his white blood cell count is high and climbing, we had an argument. I am so disappointed in myself. I know that it happened as we tried to discuss in 30 minutes what we need about 5 hours to do around the issues of finances, tuitions and balance sheets and on it goes. I know we were both speaking to each other out of fear and we react differently to fear, he and I. I felt such deep remorse afterwards, and he had to leave to catch the plane back this afternoon. Please pray for us in our humanity that we remain strong even when we stumble.   I know our hearts are breaking, every day, over and over, and now Archer’s heart is breaking too. Yet I know we are not broken and I believe we will not break. I just need courage. Billy and I need courage. Archer needs courage. Your prayers give us courage. Please pray that we will have courage. Please say a family prayer together; you know I love the rosary. Pray it with your family for us and for your own family and all families to be strengthened no matter what they face. Amen.


September 5, 2015   Labor Day Weekend September 5, 2015 DAY 32, Day 3 at Shepherd Saturday When I arrived back in the room this morning to relieve Billy from the night shift, I learned that Arch had asked Billy if he’d sing to him. Billy said it was very tender as it was just like all the many years we’d take turns singing to the children when they were young as they lay in bed before they went to sleep. Over the years, we developed a regular pattern of Take Me Out to the Ballgame, followed by Hark the Herald Angels Sing (regardless of season), then I’ve Been Working on the Railroad. Always in that order. They all loved Take Me Out to the Ballgame, especially the “for it’s 1, 2, 3 strikes” you’re out part; Paula loved Hark the Herald, and the boys loved I’ve Been Working on the Railroad especially when we sang it fast. When they were really little, they’d join in until they drifted off in slumber, but as they got older, five and six I’d say, most times they’d close their eyes and just listen. They knew the routine and it was comforting. It was comforting to us too. The nights they were still not settled, we’d add another song but just one. Billy often added a different song that came to him often in the form of a made up story. I usually added Somewhere Over the Rainbow and imagined I could sing a soft sweet version like Judy Garland in the darkness of the night settling in over the Children. I loved the rhythm of our night rituals for all those years when the children were young.   You know, I can’t recall the last time either of us has sung to any of our children. It’s been a few years for sure now that Dutch is 13. As I think about it, when we moved 20 years ago into our bigger house, Paula and Petey scampered up to the third floor where they wanted their bedrooms to be. Dewey, Archer and Dutch were not even born yet although Dewey was growing in my womb. Even with the big third floor of bedrooms, as it turned out for many years, the children chose to cluster in just one room for sleeping like they were having a slumber party every night. And as the nursery on the second floor adjacent to our bedroom had a new occupant for a couple years, who would then be transitioned to the much awaited third floor with the bigger siblings, moving from a crib to the big bed with the temporary railing, there was always movement of rooms on the third floor and yet still the clustering of nightly slumber parties. So the room where we always sang tended to be the same one on the third floor, now Dutch’s room, and so it was, at any given point at least 3 of the five and sometimes 4 of the five, chose to sleep in the same room, blanket and pillow on the carpet between the other two single beds. They didn’t care if they slumbered on the soft carpet and neither did we. We just let them. It seemed very natural. I think it must have been very comforting to them. When they were ready, they’d move along into their own rooms. And so here we are in this acute care ICU with Archer who is probably feeling vulnerable and even childlike searching for some comfort and assurance. How easy it is to sing to him. Billy is such a good man. And I think it brought as much comfort to Billy as it did to Arch.   Archer is so happy to see his Dad. Poor Billy though was exhausted after his long drive and night vigil, all on his birthday no less, and the emotional experience of seeing Archer in this new environment has taken a lot out of both of us. He crashed like I did last night in one of the apartments that Shepherd very generously gives to every family to use while their loved one is here. One of our UVA friends had already been to it and left flowers and food for the weekend. An incredible kindness.   I want to tell you about accommodations should you want to come visit Archer, which we would welcome. We have a certain number of days of accommodations here in an apartment on grounds, about a 4 min walk from our room literally with 2 beds and a pull out sofa and a kitchen. I intend to only use the apartment when family and Archer’s friends come to visit and will sleep in the fold out chair until other accommodations are made. It’s all good. So, we welcome you to come on weekends, starting with next weekend and every weekend thereafter. Archer’s going to be working very hard Monday through Thursday and Friday too, but on Fridays, there is a fun day that Archer’s friends who come can participate in although it’s not expected because of school. But the weekends will not be as scheduled for him and he will so benefit from the visits of friends. I am thinking of friends skyping or face timing with Archer too once we get settled in rehab and he is stronger. If you are Archer’s friends and you come, I will arrange with wonderful friends in Atlanta for you to be picked up if anyone flies down rather than driving. It is a long way from Baltimore, 10 hour drive. I know it’s asking a whole lot, but just know you are very welcomed to come and we will have a place for you here at the Shepherd Center. And if it’s a group and you drive, bring sleeping bags or we will get you set up with hospital blankets and pillows. But we will have a place for you to stay free of charge.   Hopefully when you come, Archer will be off the ventilator and may be in speech therapy to talk again using the tracheotomy. He had a bit of difficulty breathing at one point today and our respiratory therapist had assured him all in good time. They are masters here at weaning patients off a ventilator. In fact, they are #1 in the country for this. It was another reason for our choice, especially when one doctor in AC trauma told me Archer was likely to be in a bed on a ventilator with the machine the rest of his life. Here, in less than 24 hours, they had done the magic to move Archer’s PEEP setting from 8 to 5 (what we had wanted for safe transport but couldn’t get to without alarming blood pressure drops, and what you and I breathe at normal). It’s the Spinal Cord Injury expertise that we are incredibly grateful for here and of course so much is a function of time and timing.   And as we marvel at and celebrate this expertise here, we will never forget the trauma hospital that kept Archer alive when we almost lost him a few times in those bleak dark nights. We thank all those there who gave good care. And we are forever grateful to the Beach Club life guards and the Cape May Beach Patrol who responded so quickly. Archer himself had been trained for years as a CMBP Jr lifeguard and just this summer had sat in on the classes for recertification that the Beach Club had for its guards. As James, Archer’s true life saver, said, Archer could have been a guard too at the Beach Club; he just didn’t fill out the paperwork. That made me laugh because it’s classic Archer to be that lifelong learner.   We’re generally feeling optimistic and it feels good. We had a very good day with lung x-ray clear, chest tube clamped; smaller trach tube inserted, ventilator setting still at PEEP 5 and Archer doing all the breathing, the ventilator just giving pressure since he can’t do the clearing of the lungs yet himself. All in the good direction. And, drum roll: Archer was hoisted up for the first time by the Hoy harness into an electric wheelchair where they taught him to sip and puff so he could control tilting the chair back and forth so that he cradles all the way in recline position one minute for every 30 minutes to prevent those dreaded bed sores. And he did a huge 4 hours in the chair, sitting upright which is what his body needs to heal. They say staying in the bed in a reclined position leads to all kinds of problems, so it’s up and at ‘em. It’s pretty painful for him but he sustains it well. Archer showed a lot of courage to be hoisted in the air in a sleeve and to have three people, one holding his neck and the others steadying the crane and his gently swaying body while they neatly lowered him into the tilted wheel chair. It was pretty exciting. It was a big day.   And as the day came to a close, and the night began, our weekend male nurse came in to introduce himself at the shift change. He said, Hi, I’m Fo rel. I looked at him and said a bit incredulously, Your name is really For Real? He said, Fo Rel. I looked at Archer and he at me. I thought I would burst out laughing. I then reached to turn over our nurse’s name badge as it just couldn’t be. It read: Ferrell. Ferrell, For Reel, Mr. For Real for us. Archer, Ferrell and I all laughed together. It was a moment, a wonderful moment. You gotta love the south. And Archer really laughed. A first. And he looked so much like himself. Amen.   September 5 at 2:30pm, a message from Bill   Sept 5 230pm Hanging out with Archer. They have him in a chair and he likes it. He wants to sleep so he asked me to sing him songs that I sung to all of the kids when they were little. So I went back in time and remembered our bedtime ritual songs – take me out to the ballgame, star spangled banner, hark the herald angels, and I’ve been working on the railroad. To this I added a sung prayer- Our Father- and the Carpenters “close to you” which I think is an awesome song for how we feel about Archer. Thanks to everyone for the beautiful birthday wishes.   September 4 DAY 31. DAY 2 at Shepherd   Yesterday as they briskly and carefully unloaded Archer, tightly secured like a papoose on the folding gurney, from the ambulance van, and four different paramedics hurried to secure the different monitors attached to the lines and hoses attached to Archer’s body, we entered the Shepherd Center. We had come sight unseen. I felt like something was happening that I would never forget. It was neither excitement nor anticipation. It was more a reminder to take in every aspect every molecule of this moment.   As I got out of the front seat of the ambulance and looked around, the entrance was, well, an institutional entrance. No Shangri La, no Oz, no pearly gates. On the area around the entrance were a number of older folks in wheelchairs. In fact a quick glance around, and everyone I saw was in a wheelchair. I had a quick flash to the days I would mediate at the VA hospital in Baltimore. No one was moving. Everyone was in a wheelchair apparently waiting for a pick up. It was a harsh site for me. I wanted to get away from it. It scared me. I was aware of the secondary twinge of shame I felt at the feeling of experiencing it as harsh and wanting to get away.   I guess I must have been staring at this scene in a momentary daze taking it in and realized I had to run to catch up to the medical team who were well on their way through the doors and racing down the hallways to the acute ICU with Archer on the gurney. Then the craziest thing happened.   As I was jogging to keep up, I saw this huge sign on the wall in the corridor: “Restoring hope Rebuilding lives”. I had to stop. I just stared at it. Hope.   I then literally ran to catch up with the stretcher flying down the corridors. That message filled me with the potential of our rehab choice and the potential of the ultimate choice: to not hope or to hope.   We are choosing the latter. And I was sharply aware that it will be a daily choice. One that may get challenged. One that I may not always believe in. But I know the feeling that floods my soul and very being when I am hopeful, and it’s that feeling I want to breath in and live in. And I want my family to live in hope and I want Archer to breath in hope and live in hope and to be sustained by it. I think that is what God offers to all of us if we believe. Hope. It’s very powerful medicine.   But it’s nonetheless been a hard transition.   Archer hasn’t slept. He seemed unhappy and distant all afternoon when we arrived and throughout the night. All he wanted was pain medicine and sleeping aids. We both quickly learned that it’s not Shepherd’s way to remove pain by using narcotics which I’m happy about but it’s also tough because Archer is in so very much pain from all the moves of the transport and he’s coming from a steady daily diet of narcotics since the lung surgery and the additional chest tubes a week ago. To ease the acute agony of the burning chest walls and hoses in his side, we consented to stronger drugs amidst the ongoing discernment of appropriate pain management for Archer. We negotiated with Archer and the trauma unit nurses agreeing on just four days. But that turned into 6 as the pain didn’t subside. We had been doing pretty well up to that point to limit the narcotics, not consenting to increasing the dose on the drip on many occasions and instead seeking alternatives, and ultimately terminating the fentynl drip altogether choosing to rely instead on other things including the environment of our healing sanctuary, breathwork, and all the cards and the prayers that both distract and bring hope to Archer.   It seems to me it’s easy to dope people up in the name of pain relief or providing comfort but it’s tricky business with a slippery slope when you do so. (More later about conversations I would overhear in the ICU with elderly patients.) The irony of Billy’s and my going from advocating vigilantly every day, and at every shift change at the trauma ICU in New Jersey for limited narcotics where we’d regularly say No to the “Archer, are you anxious? I’ll bring you –” “Archer, are you in pain? We’ll increase the fentynl drip”, or “Archer, are you in more pain? I’ll bring you oxycodone” and so on. All good people. All doing their best as they’ve been trained. But we wanted Archer to remain alert and we didn’t want Archer to have to spend his precious energy fighting what we were learning quickly were all the secondary complications that come about as a result of the first line of treatment, including the use of narcotics for extended periods of time to treat pain. We saw in the first few days how alternatives could be employed if you asked and that they were just as effective for pain management, albeit not as long lasting but if you didn’t know that the use of certain pain meds leads to the need for higher dosages once the body gets used to the first dosages, you can find yourself in a place you don’t want to be with your loved one pleading for more dope. We could see so easily how mental and physical drug dependencies begin. Pain and pain relief. It’s complicated.   But in this new phase of transitioning to rehab here, I began to see my job abruptly changing within the first hour. While I didn’t have to have those narcotics discussions over and over with nurses, I also was no longer going to be the one to take care of most of Archer’s needs any more. (and not just I but Billy, Paula, Pete and Megan, and our back up help: Aunt Elizabeth and Uncle Bill, Uncle Tripper, and Aunt Lillian.) That reality was actually emotionally painful for me. Life was changing abruptly. It was tough love for both of us.   Why you might ask at this wonderful kind and gentle place is there tough love. Well, Archer now has a sip and puff to call a nurse himself and a mouth suction that has high volume air pressure within reach of his mouth so he can clear his own secretions. He doesn’t like either as they are large heavy coils clamped on either side of his bed and then positioned over his shoulders to his lips truly in his face. And he really doesn’t like the loud hissing of the air in the mouth suction but it is now a necessary evil. The same sound had so bothered Arch in trauma ICU that the nurses taught us how to turn the machine off and on so long as we would do the suctioning. Because Archer was alert and not drugged out, he had mouth clicks for us every 20-30 minutes to turn the machine on to suction out the secretions. So our role was vital and totally abdicated out of necessity. But here, they want to instill his independence right away. And he doesn’t like it, or the mode of getting there. So this very loud hissing noise on the stiff coils as he stares out of his stiff neck collar and can only see these two hard plastic tentacles in his face are new modes he needs to learn and cope with. I’d liken our experience right now to what I could imagine is almost like a drug or alcohol rehab situation. We’re weaning off. We know it’s in the right direction, but it’s hard. And it’s cold turkey.   As Archer got very upset by the contraptions and Archer called me for help, I held his face in my hands giving him a shield to all that was happening in his peripheral vision as his eyes darted wildly back and forth. I said steadily and as compassionately as I could with every ounce of my being, I know you don’t like that sound. I don’t like it either. Don’t fight it because it will fight back. Instead imagine it is something you love and that brings you peace and happiness. Close your eyes and imagine what it is that brings you peace and happiness. Now incorporate that sound into that peace and happiness. That sound is peace and happiness. Feel that? It’s all going to be ok. You need that sound. He calmed and seemed ok thereafter. He didn’t fight it the rest of the day and mastered it by the wee hours of the night.   But even with a nurse call button via the huff and puff and the self empowered mouth suction, Archer still clicked his mouth for me every 30 or 45 minutes through the night last night asking me about certain sounds and beeps in the room which were new and different. And, because he can’t see me in my fold out chair bed since his bed is too high and I’m across the room, I think he was just calling in pure reinforcement that I’m here. And I was. And I’m glad I was.   So the last 36 hours have been a struggle to incorporate these many new ways in this new phase but he and I both know the why as much as we are having to be weaned from our newly formed but now old habits of the last month. And that is probably at the heart of why we are both really exhausted and have not yet slept. We were still keyed up in warrior mode. That’s the only way I know to describe it.   So, neither of us slept last night. But I remained hopeful that today would be brighter.   And so it was overall. Brighter as I opened the blinds in our room and the visits began about 7am and so did a lot of activity. I am learning from the 20 or so different experts who have seen, talked with, assessed, X-rayed his lungs, the Pulmonologist who expertly pulled out one of the right lung tubes while bloody watery gunk squirted out of Archer’s side from the pressure in the body, the team that re dressed the remaining wound, the Dr who pulled the embedded stitches out of his left shoulder area from the pacemaker surgery, the nurse who emptied him to start bowel therapy, the physical therapist who performed the tedious ASIA assessment over a few hours, the tech who sonogrammed his arms and legs to make sure no blood clots, the occupational therapist who assessed if and how Archer may be able to feed himself in the future, the speech therapist who taught us both about swallowing and who approved 5 sips of water but only five because of multiple swallows that need to become one hard swallow to progress, and only 5 sips after we learned how to brush his teeth and suction out the toothpaste and water, the techs who came and measured him for a customized electric loaner wheelchair, the nurses who got Arch in a huge harness sling from the ceiling crane and pulley and into the wheelchair for 4 hours, punctuated every 30 minutes with one minute tilted back in the chair which Archer commanded through a straw which movement will also prevent the dreaded skin lesions for any quadriplegic since Arch has no way of shifting his body on his own. (imagine how long you can sit without moving. Not long. And as a result you and I don’t have skin lesions), the two chaplains who stopped by and who arranged a visit by a local Catholic priest from India who later this afternoon blessed Archer with an annointing of the sick and brought communion (we said the Our Father together and it was the first time in days that I saw Archer have enough energy to say/mouth the whole prayer). He brightened at the Amen. I think the day began to turn the corner honestly after that. We were then visited by Mr Apple one of the founders, and by the medical director whom I felt I knew from our phone conversations, and we were also visited by our case manager, and by the housing ladies who showed me where I can stay and how one of my UVA sorority sisters had already been there with flowers and food, and a visit by one of my other college house mates and sorority sister who dropped off lunch and sundries, and a member of the Shepherd Board in his 70’s who entered in a wheelchair and shared he had had a C6 accident many many years ago. I think the realty hit Archer. That gentleman was c6 in a wheelchair. Archer is C5. That he could be in a wheelchair the rest of his life.   Towards the end of this very busy day as a carry over from yesterday, still not showered but waiting for Billy to come later tonight, I think I had an out of body experience. I was sitting behind the physical therapist who was standing over Archer doing various movements with his hands and arms. I was listening and taking notes. He asked Archer what were his PT goals. Goals. There was a lot of silence. Archer then mouthed, I’d like to be able to drink orange juice. The PT said, Alright, orange juice.   I smiled to myself. PT Goals. I had never thought of it that way.   Then the PT asked Archer what kinds of things he most liked doing. Archer mouthed, Playing lacrosse, Drawing, Painting. Archer paused and added, Cooking.   He paused again and added, Music.   The PT asked him what was his favorite subject in school. He mouthed, Math. The PT repeated, Ok, Math. Archer then mouthed, I just like school, everything about school. The PT repeated that, Alright so you just like school and everything about it.   The PT then asked again, so what is your goal for your rehab here? What do you want to be able to do when you leave here? Archer mouthed, Draw and go back to McDonogh.   There was a long pause and Archer asked his PT, Do you think I’ll ever be able to use my hands? I was stunned. The PT repeated what Archer mouthed as he had with everything else previously shared. The PT said, I don’t know. Only time will tell.   I was behind them in a chair where Archer could not see me. Archer’s question was just too raw for me. I felt the crack in the dike again as the hot tears rolled down my cheeks onto my scarf and I felt my face writhe and twist in an agony that could not be expressed in sound, an agony for the harsh truth of Archer’s realization of the reality that faced him that he may never have the use of his hands. And then it was as if I was not in that chair but I was looking down on the whole scene as if I were hovering above. I could see Archer and the PT working and I could see me, slumped in the chair about collapsed in grief. It was weird.   So that is how it’s been today. Billy just arrived for a couple days. Thank you, Lord and Mary for his safe trip. Pray for us. Pray for Archer’s strength, pray for his progress and pray for a Creative Miracle. I have so much more to share but am just too tuckered out. Sending love. Amen.


Thursday, September 3 Transport Update:   12:45 PM Just landed. Safe and sound. Thank you for that energy field you created in communion with God and all the holy angels. Amen.   Morning transport A lot to do to transport someone on different machines and many lines attached to the body. There was about 10 or 15 minutes when all the hospital monitors we watch so closely for heart beat, blood pressure, oxygen saturation, oxygen pressure, oxygen quantity, everything vital all went blank because they were unplugged or turned off as the new crew quickly s d adeptly transferred archer into their portable equipment. We all prayed very hard.   9:24 in ambulance 9:44 pulling out of hospital 9:47 arrive airport, waiting for van escort at metal gate 9:57 airport security finally arrives. But says they’re waiting on state police to come sweep us. Archer is laboring in back. Very alert although he had asked to be sedated. No go. Need him to tell us when the pressure is right and not right in the ventilator. He knows. 9:59 Finally the state police security arrive with dogs. 10:01 The large military zone gate slides open and we are now being escorted in.   As we waited for the police, I said to the driver my phone was on 5% as I forgot to charge it bc I had packed the Chargers early this morning. I noticed my phone with its missing extra battery pack bc I had left it by accident in the Kansas City airport some months ago on a quick flight change. Thing is, it wasn’t just the battery pack. No, I had an extra storage in that pack. A lot of storage. I had already transferred over 20,000 pictures as part of my New Years resolution to organize them. So, there it was. I have cried and lamented my loss with no back up of course, how dumb, of all those photos. Here I am now. Staring at that half case that I still am using, less the extra battery and storage. The past that I have grieved over then. I think in this moment God must have been preparing me to let go of the past. Onward.   Battery Pics God was on me not to look back.   10:20 taxiing down runway Little Bouncy   Archer very very brave. We’re being transported by shepherds team, the carrier they contact with and specialists in trauma Cspine ventilator. The atmosphere feels both a high pitched and tense and Also silent and solid as everyone is focused intensely on how archer is doing with every new piece of wquipment, each new breath, the pulling of the new trach tube, the pressure of the new oxygen settings as the team works until it is just perfect. I love the guy in charge already. He is strong and quietly confident. He told Arch in the elevator in the way down to the ambulance bay, that he had to hold any mucous in his mouth and if he was not Abke to not worry bc he’d get down in thee and get it out with my fingers if I need too. Ok? That’s the team we’ve been praying for for this transport.   Thursday, September 3, 2015   DAY 30 Family & Friends Update As we sit in the silence of our lavender filled room with soft nature sounds muffling the incessant beeps outside our door except the two Code Reds that bellowed throughout the corridors at 1am and 2am which alarmed and unsettled everyone, but it turns out it was only a smoker in the bathroom, oh my, I am aware of a peacefulness.   I am feeling deep deep gratitude for the hospital and the staff. We started at 4am and Archer is cleaned, has new chest tube dressing, new tracheotomy dressing, has had an EKG of his pacemaker to make sure it’s in place perfectly, an X-ray of his lungs to ensure they are without pneumothorax, his temperature taken regularly hovering around 99.4, not bad, and we continue to monitor all his vitals closely as always. We are ready.   Today is day 30. A month in trauma ICU. It’s hard to believe. Where did this month go? The friends, visitors, cards, meals, prayers and more prayers. We are so deeply grateful. Thank you.   We all know that we almost lost Archer more than a couple times. It was your sustained prayer, every single one, that carried him. I hope you know that. I know that. Billy knows that. Our children know that. Most of all, Archer knows that. And we know it in our hearts. Our gratitude is immense and our love for all of you feels very expansive.   We do not know what the future holds but we do know it will be good. It will be meaningful.   The day before yesterday when the Blue Angel flight crew came to visit Archer, we chatted about teamwork. I told them I recalled a motivational speaker event Billy and I had attended with a Blue Angel not so long ago and how we marveled at the level of trust and competence to fly different aircraft at high speeds upside down within mere inches of one another where they could see the batting of each other’s eyelash. And to be so well practiced and to know each other’s every move so well and to hold each other’s life at the highest premium under dangerous circumstances with courage and willingness. That really struck me. That’s the kind of team that we are looking for Archer because Archer has the courage and the willingness to practice very hard. And he has demonstrated time and again his discipline and steadiness in perilous times. I believe that team is out there.   So off we go to the Shepherd Center in Atlanta. I think he and I already started our time travel last night. I didn’t want to leave the hospital for a few hours of sleep. I wanted to stay right here. No mistakes. Steady. It will be soon.   So, you are probably wondering why Shepherd Center. We believe in miracles. We also know we have to do our part. Yours is prayer! An interesting convergence of connections happened all at once within two days, the very two days I was visiting facilities in Baltimore.   The amazing options we had to consider in our own Baltimore back yard were plentiful and a blessing we felt and a resource we know we will need. Our beloved Baltimore friends and colleagues, and friends of our friends as you know how that is, connected us quickly to UMD Shock Trauma, Johns Hopkins spine, Kennedy Kreiger and Kernan, now UMDRehab. I went to visit all in those couple days I was away. All of them were eager to accept and make it easy for us. It was amazing but I couldn’t find just the right fit for my 6’2″ son who is still in pediatrics but certainly not a toddler and is not yet a full grown man. Adolescents are special and have special issues and needs. I know from our older children what a magical life shaping time the adolescent years can be if given the right encouragement, support, stimulation and love.   The floor and admissions staff of all the Baltimore facilities and their medical directors were knowledgeable and wonderful. But the combination of what I felt in my heart Archer needed was not quite there.   So it was as if the Angels all came in a couple of days storming me with signs pointing us to Shepherd. They were gentle but full of watchfulness. I paid attention as I was open. I remembered that first Sunday I went back to Cape May for Mass and about collapsed when I heard the petition from the pulpit “special prayers for Archer Senft” as another kind angel swooped up by my side and literally held me from falling to the floor as I silently wept. But what I heard in the homily that Sunday was to be Alert. Stay alert. That is when I changed some of my tentative requests about medicine and pain killers and curiosity about what they were doing for and to Archer to requests that were more confident and clear so as to assure Archer’s mind remained clear and we were told. And when our vigil turned sentinel, I realized we had to step up the alertness at every single moment. And it was so necessary. And it was constant. Constant vigil. Thank you, God for gently and steadfastly guiding us.   Oh I was digressing. Shepherd, yes. We are deeply indebted to the Christopher and Dana Reeve Foundation and a particular staff member who discreetly tried to reach out to us. And she was persistent. When we finally connected with her, the doors were open and we were ready. It was timing. It was being educated. It was being curious. It was shall we say we felt it was inspired by God.   Because at the same exact time dear old college friends from UVA connected us to Alana Shepherd, key phone calls were made also by a dear Baltimore friend, I had two other dear friends, one a mom of one of my children’s friends in Baltimore and another from my high school in Illinois who was in California, making calls to gather information and then the quiet gentle texts from other friends around the country about someone they knew or heard of who went to Shepherd began to happen. There was a sort of divine convergence. The Angels were hard at work since Billy and I had committed to being in Baltimore as Archer so adores and needs his friends and his McDonogh school and actually all the parochial and independent schools where he and his siblings have so many dear wonderful friends. But when I learned how intense rehab is for 5-6 hours of physical activity each day and how exhausting it is and that there is little time for visitors, I felt our commitment may have been made too quickly. We didn’t know enough. And when I saw that our 6’2″ 17 year old would either be sharing a room for months with a child in a crib or with a much older adult while he was still in puberty, my heart was very unsettled.   Not only is Shepherd the preeminent Spinal Cord Injury Rehabilitation center in the world, but for us, it has the necessary acute ICU within the facility just a couple floors from where Archer’s new room will be rather than in a hospital nearby and its staff have the premier expertise in weaning C5 patients off a ventilator if it is meant to be; it has a specific adolescent program where other 16-19 year olds live together on the same floor dedicated to adolescents only and there are 6 others rehabbing there now. Most of all, we believe Shepherd is full of believers and it has a spiritual component as part of the recovery. That combination is what we were looking for.   And I’m smiling because as all our children gathered to see Archer last night, it hit me, Oh my, it’s not just their not seeing Archer for awhile and his not seeing them that will be very hard, especially for Dutch as they were the last two of our kids to share the third floor of our house together, but I will not see all my babies either for awhile. We decided to go out and get a bite to eat as another one of Archer’s uncles, who all adore him and vice versa, came to keep vigil so we could gather. We left the hospital headed for a steak house. It was the first time I had left the hospital or adjoining parking garage to walk more than a block. Before our meal, I visited the ladies bathroom. As I came upon it, the sign denoting it was the women’s bathroom was marked, Lambs. I thought, Hm, that’s a new one.   Well, at this very moment as we wait, it dawned on me. I love that the place where we are going is called Shepherd. An old friend sent a verse from Isaiah: He tends His flock like a shepherd: He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young.   I was and am a lamb. And I will carry my lamb.   I too feel gently lead.   Please imagine right now and create that energy field for us of joy and delight and relief and gratitude that we will feel upon landing. And let’s pray to God and to the blessed mother Mary and all the guardian angels. We’ll let you know. The flight team is almost here. Amen.


Tuesday, September 1, 2015 DAY 28 Family & Friends Update   Although none of his settings have changed, we think Archer is doing well Up on a tilt table again and even a visit from the Blue Angels, They are such impressive pilots in their flight jumpsuits exuding patriotism and athleticism and daring courage to do what they do in flight. You know what we did? All six of the pilots and crew all held hands in a circle, including their holding Archer’s hands, surrounding Archer’s tilt bed, and we said together the Prayer for a Creative Miracle. It was really beautiful.   Yep, that’s what it will be for Archer: a creative miracle.   It’s clear that we need to get the decision right for where Archer gets his inpatient rehabilitation.This ICU is keeping him stable but has done all it can and can no longer care for Archer with the expertise he needs. We were given a letter for Archer’s diagnosis and prognosis from the Chief of Trauma here today as a reminder of the reality of moving Archer so he can progress. To see those words in writing about his condition broke my heart again and again: C5 quadriplegic complete. Acute lung injury. Complete heart block. Ventilator dependent. Respiratory failure. It’s a lot.   So, after great care and discernment, our family has made a decision, bitter sweet. but a decision we know and believe is right. Archer will do his inpatient rehabilitation at the Shepherd Center in Atlanta. It will be hard to be physically separated from each other and from our dear Baltimore for a period of time, but as Dutch said, We’ll just pretend it’s like Archer going away to college a little early. I loved that. But mom doesn’t usually go too. Our new normal is about to begin. I will move to Atlanta with Archer for what we anticipate will be til Thanksgiving or Christmas. Archer and I will depart here in less than 36 hours.   I know you have many questions. So do we. Most of them we don’t have answers to yet. All we know right now is that we are doing what it takes to get Arch to the place that is rated as the number #1 Spinal Cord Injury rehab facility in the world. I’ll share more later I promise. Things are moving very quickly now. They need to be.   A jet will arrive Thursday morning at 7am and we will be in flight with only two carry on bags total between us. I think that’s the kind of journey God is asking me to take. Direct, lighter, no looking back. And to not be afraid. I feel hopeful. I feel grateful. And I’m flooded with relief. Their air transport is so expert that they will take him even though his vitals are still not where we all wanted. Our lionhearted Archer is really wasting away here in a bed and we all know we have to get out of here to a place with higher levels of expertise in SCI in order to move to the next phase. Thank you for all your prayers that we would make a good decision. Billy and I know it’s right.   Today was also our book launch day. Billy posted something on the ORANS website. We cancelled the event we were going to have today, but as far as I’m concerned the launch happened. Even better and bigger: Archer strong. Strong enough …to the Shepherd Clinic.   For tonight, if you are willing, please start feeling in your heart what it will feel like for Archer to have a successful transport to Atlanta 3 hrs and 30 minutes in spite of the cabin pressure in a jet on his fragile lungs and respiratory ability. Go to bed tonight and tomorrow night and feel your head on your pillow and imagine and feel the relief. The happiness. The smile from your imagined safe transport of Archer. Please feel that when you pray for us. God will hear you. Mother Mary will hear you.   Your prayers, every single one of them, help us so much.   We love you all so much. I know we are all in this together. It’s been a big important day.   And if you purchased a book, thank you for that too. Amen.   IMG_0057


Thoughts for August 31, 2015 from Bill Our beloved Archer is stable today. He actually has had a great day with physical therapy on a tilt table that got him almost vertical for the first time. We are thankful because it has been a roller coaster since his spinal cord injury on August 5th. We will never forget this August. Archer’s path is becoming more clear – intensive inpatient rehabilitation for several months, then….well, we just don’t know, but it is good to at least have some confidence about what lies ahead for next several weeks when so far we have not been able to feel like we could look ahead hours, much less days or weeks.   For Louise and I however, our path in managing this moment in our lives is not so clear. This was not at all what we envisioned for August 2015. The timing of Archer’s injury, its completely random nature, his innocence in causing it – all these things make it seem purposeful to us. Is it? We don’t know. Maybe not, but maybe it is. We feel that God is very actively involved in our lives, especially at this particular moment in time.   September 1, 2015, is a day that we have spent three years working toward. Three years deeply thinking, reading, talking, and dreaming about the essential elements of being relational. What makes for quality interaction between people? What attitudes and actions bring on lasting positive change? Three years organizing it, naming it, writing it and then being shocked at the challenge of living it and the implications of it for every issue our world faces.   Now it has become a reality. September 1, 2015 is the release date for Being Relational, The Seven Ways to Quality Interaction and Lasting Change. It has been offered into the stream of our culture in hard copy, e-book and on the website of JoinORANS.org. Will it matter? We so, so hope it will because we so, so believe in it.   Our mission in writing Being Relational and in creating the nonprofit ORANS is to connect people by spreading understanding about good ways to interact and to love and care for each other. Our hope is that, even though we might not agree on politics, religion, morality or truth, we can find unity under a common understanding of what it means to be good to each other and how to relate to others in ways that are both good for ourselves and good for others – even if others aren’t good toward us, even if we have no relationship with them, even if we disagree on issues important to us, and even if we see them as bullies who do not in any way deserve to be treated with kindness and care.   The events of the past month have been an affirmation for us of so much we write about in Being Relational. We have felt your embrace, your offering of prayers and support to us. We feel connected to you by love. That is what Being Relational is about. Please know that we are grateful.   Pope Francis has said, “An authentic faith, which is never comfortable of completely personal, always involves a deep desire to change the world.” We want to change the world, as ridiculous as that might sound. We wrote Being Relational with that hope top of mind. In our work as mediators and in our everyday lives as citizens and community members, we see so much that divides people and pits them against each other in transactional interactions. And yet we know that somehow all of mankind is connected by love in ways we cannot comprehend.   We are connected even to people we consider enemies. Archer’s injury and the response to it we have received has shown us this truth. We have seen the love and care for him and us radiate out to many, many people connected by love to us. To the hundreds of people we know and love and the hundreds that each of these people love, and on and on exponentially. We believe there is a connection of love that very few, if any at all, are not part of. Being Relational is about treating everyone as if they are connected to you through love. We have been the recipients of that and know it is real. People that we do not know or have any relationship with have given their love to us. Not because we deserve it, or earned it, or because they expected anything in return. They just gave love because they had it to give and felt the desire to give it. How simple. How powerful.   To us, it feels like a seed has been firmly planted. Maybe like a tiny mustard seed (“senft” in German). It has sprouted and is growing. We want it to continue to grow, and through the collective prayer and energy of the multitude of people that have been touched by Archer’s situation, we expect miracles not only in Archer’s recovery but also in growing the idea of Being Relational and ORANS which seeks to spread that idea and change the world.   ORANS translates in Latin as “prayer” and it represents our prayer for a better, more peaceful world, full of people connected by love. We believe that starts with each of us looking hard at how we relate to others, being conscious of what is going on, being deliberate in how we respond, and being discerning in how we interact. We believe that also extends to our collectively being relational in how all of the organizations that we are part of conduct themselves. Asking ourselves, “Is my family relational?” My company? My community? My country?   Being relational is a big challenge and a big idea. ORANS wants to change the world, one interaction at a time. Do you want to join us in this great adventure? No religious, political, or other affiliation is required – just a desire to grow in understanding of loving ways and to spread that understanding to others in word and deed.   We are not sure how the story will unfold or what its end might be. But here, on September 1, 2015, we feel that it is unfolding and we know Archer is a big part of it. We believe there is meaning and purpose in every step of this journey. There is a lot of work to be done and fun to be had, and if you want to be part of that and help us change the world, go to www.JoinORANS.org and join us at the Join the Movement page. Make a donation if the spirit moves you. Or email us at ORANS@BeingRelational.org to let us know how you might want to get involved. We need anyone with energy and a heart full of love – writers, commentators, photographers, social media mavens, fundraising event producers and promoters, campus organizers, music lovers, and other roles we haven’t dreamed of yet. Thanks for reading this.   Love, Bill


Sunday, August 30, 2015   From Bill: Archer had a quiet day today. He was stable and seems to be gaining strength. He is keeping a positive outlook although there are of course times when his situation overwhelms him and he just stares ahead and asks for pain medication. Those aren’t too often. Mostly it seems that he just wants to sleep. Not much interest in what is going on in the world, but very interested in our reading to him the cards and notes so lovingly written and sent to him by so many of his and our friends.  He has big challenge clearing any secretions from his throat and chest and it causes him great discomfort, spiking his heart rate and BP. But he is strong and works very hard to use the muscles he has command of to take care of himself. We are starting to look at options for moving forward with his care. Thank you for your prayers that we are wise in making these decisions.


Saturday, August 29, 2015   8-29-15 DAY 25 Family & Friends Update   Two days post lung surgery and it seems we are in a no man’s land caught between this Trauma ICU being out of options for Archer to further his progress and being too fragile for transport out. Lord, help us.   As Archer rested, really rested aided by pain medication and our healing sanctuary, I was able to take in that we might have to stay longer. Thursday night he reported excruciating pain in the entire part of his body where he has recognizable feeling: his shoulders and top of his back and neck. It was difficult to watch his pain coming out of the anesthesia as he was do desperate for water, as his tongue flickered back and forth for any moisture. I think he also had a little flash back as he came out judging from what he was asking me. But it was a few hours later as the general anesthesia wore off that his mouth writhed, Crushed, I’m being crushed! Crushed. I knew it would almost be cruel to calm him in our usual ritual where I get very close face to face, eyeball to eyeball with him and we breath together totally focused on the breath, the same way Billy would do with me through all my baby deliveries, but this time it was his very lungs themselves that were crushing him. It seemed cruel to do our usual. He pleaded, his voiceless frenetic mouthing, Flush my lines! Flush my lines. It was scary. All I knew was don’t fight against. I whispered steadily, Don’t fight the pain, Arch. Don’t fight it. Move toward it. You can do it. Use your mind to focus on it and move *toward* it.   I raced for help. I realize now that this was happening at almost the exact time of the prayer vigil in Baltimore where hundreds from all faiths gathered for Archer Strong. If you doubted the reason for your gathering or your prayers, you do not need to doubt. It was your prayers and intentions and love that supported Archer through that excruciating pain Thursday night before the proper combination of pain medicine could be administered.   When I talked with the surgeon afterward about the crushing sensation Archer experienced, he said it is probably the pleurisy in his lungs (super sensitive tissue now inflamed tissue because of the plastic lung tubes jammed into them which the tissue wants to reject added to the tissue’s reaction to the talcum powder sprayed in his lung after it was water flooded to ignite scar tissue forming to create the adhesion of the lung to the chest wall. ) It was so helpful to understand this so I could explain to Archer that it would feel this way for about 48 hours post surgery, and we will control his pain actively. All that is to say that I promised Arch I would authorize pain meds for that 48 hour period. We have been fairly successful with reducing a regular need for narcotics and forms of morphine by instead relying on soothing music, lavender, rosemary, peppermint, nose breath work, and a very quiet sanctuary of healing, with very low voices and minimum amounts of other meds instead. As a result his body all in all has been working well, as it should. And I remind him of that. His body is working well.   Our room is good for other reasons too. A few staff have asked to enter through our closed glass doors with the curtain drawn and they whisper, Ahh, this is so nice in here, which is good because if it is nice for them as well as for Archer, they will feel healed too which I know they need because I can’t imagine the toll the environment extracts from the medical staff especially the nurses. There are ones that are rough, but they don’t have to be, and it’s understandable that they are in that environment. But I knew from what I had observed regardless of what we have tried to create for him, those two large tubes in his chest and lung are excruciatingly painful. And I also believe that even though his body is paralyzed now, he will have cellular memory of this pain that will be important to work through.   So, the drugs had Arch in and out for Thursday night, and most of yesterday. Indeed it looked as though he was resting peacefully and we let you know that. But things changed again and we took a step backward. He spiked a 104.8 fever yesterday afternoon. It happened on a whim really that we realized it.   It was late in the afternoon around 4pm when Archer opened his eyes for a period of time. He looked paler and thinner to me. He requested a cold washcloth in his Archer way, where he glances up to his forehead until I register that he needs the ice cold cloth. Good. Looks like we’ve got our old Archer back. But Hmm. He hasn’t asked for an ice cold cloth in four days. I went out to get the crushed ice for the little plastic tub that we use to dip and ice down the washcloths, always doubled is Archer’s preference, probably because the ice cold lasts longer. Leave it up to Archer to figure out a system of best ways to make things work well and to instruct us. As I lay the wet cold cloths on his forehead, he mouthed, More pain medication. I went out to seek a nurse.   Seeing none of the nurses in the bay as they all must have been with other patients, I asked the NP if Archer could have some pain medication as it was all prn. She looked in her hand held device, pulled up Archer’s chart and said his 2 hr pain medication had been given 1 hour ago and his 4 hr pain medication had been given 2 hrs ago. I consulted my notebook, thank goodness for it, and said that didn’t sound right. I think he is due for both. When Archer asks, it’s almost always time as he asked to have a clock in front of him and to see his monitors at all times which I made sure of. He’s smart that way and I think it gives him some empowerment in his situation. She checked again and so it was. Good. I went back in to tell Arch they were on their way. When she arrived to dispense them, and I asked to see them as I always do now, I also asked her, Would you mind, just for the heck of it, checking Archer’s temperature. She said no problem. She inserted the metal thermometer probe and watched her hand held electric monitor. She remained standing there watching it and after a period of time well beyond the normal, I asked her, What’s going on? She said staring at the hand held monitor, He’s at 104.8 and climbing. I’ll order an ice blanket.   OMG. 104 flashed before me as that was the number I recall with babies and toddlers as the danger zone for brain damage, and when Archer spiked high before and we iced him, I had asked a nurse then what was considered high: 104 is considered high enough she said; he was almost 105 and climbing. I raced for the ice packs to fill as I know the drill now. The NP said it was not necessary because the ice blanket would take care of it.   I rushed with the empty ice packs to the crushed iced machine anyway to begin filling under the cup ice dispenser which is clumsy and messy but worked to get the job done. A crazy thing happened. The nurse who was involved with the medical error was there at the adjoining sink. I said, Hello. Archer is spiking a high fever.   As the ice tumbled out and I had to shake the bag from time to time to get it filled, I looked at him, his head down as he used the sink.   I said, I have looked for you since that night but have not seen you but for one time in passing but you went into a room. He said, yes I know.   I said, I have wanted to talk with you,. I wanted to tell you that as terrible as it was for us, I know it must have been terrible for you as well…. And we didn’t want you to be punished. We just wanted to understand, not have it swept under the rug and not have it happen again.   He said, I take full responsibility. It should never have happened. I said, It’s understandable how it did though with all the lines and such. He said, No. I can handle more lines than that. I take full responsibility and it will never happen again. I said, It will never happen again. He said, It won’t.   I said, I am sure it won’t. You are a caregiver. And you are a good caregiver. He raised his head and looked right at me and said, May I help you? I said, Absolutely. And he grabbed a large Styrofoam cup and tore off the end and held it to the mouth of the ice pack bag under the dispenser like a funnel. Together we filled the remaining two bags in an instant. I was so grateful.   I said, Teamwork. Thank you. And I raced back to the room.   I know now that ordering anything in the hospital takes time. It’s understandable but we don’t have to be satisfied with waiting when some self help can work too. When I returned to Archer’s room and two of our favorite nurses had arrived on the scene, together we ice packed Archer under his arms and in his groin, and one of the nurses got additional packs and put them on his wrists and ankles. I felt relief. I was so grateful for our working together. And I know Archer felt the responsiveness too. It may not have been the best, but it was a good start. By the time the ice blanket arrived, his temperature had begun to drop, he was at 104.7, not much but at least something, no longer climbing, better than nothing.   The ice blanket machine arrived 30 minutes later. We removed the make shift ice packs and they wrapped Archer’s thighs and abdomen in large thick contoured sheets of heavy squishy fabric like heavy rubber armor with sticky stuff on one side. I could see that Archer’s thighs are very thin. They told me the pieces were very heavy because each piece of water armor is full of little cells of water which are hooked to a hose that is hooked to a machine that sends coolant to the cells.   I watched in the dusk and then into the darkness for the fever to drop. It was slow going, very regulated. 104.3, etc. When the machine got to 99, I went to get a nurse. She checked the machine. Not yet. About an hour later, Archer said he was very cold. Archer’s temperature read on the machine was at 97 degrees. I went to get a nurse again. The machine had gone a little too far she said; they must not have set the gauge. She kindly turned it off. I said Archer is pale. Archer was uneasy. She said his core temp would normalize. She left; he said he was still cold. I went and asked if we could put a sheet over him or something. Sure. We did. He said he was still cold and I could tell in his face and eyes, he was growing more uneasy. I called her again. His temperature was at 96.7. She asked Archer if he would like the ice armor removed from his body. He nodded. A couple nurses came to unwrap him and put a sheet back on him. After they left, he mouthed, Ma, listen to that sound. What is it? We listened in the dark to all the many whooshes and gurgles of his ventilator and his trache and the other many clicks and monitor sounds and hums in the room, punctuated by the bells and alarms outside his room that are unceasing from other patients’ rooms. I wasn’t sure of any different noise. He had the ability to describe it as I watched his mouth. Wooooshsssss, Wooshsssss. Ah, that was the new sound of the ice blanket machine. That was it. Archer has no ability to see much as his stiff neck collar when he lying in his bed forces him to look in one way with very little peripheral vision, like having blinders on. I said Arch, you are so amazing. Yes, it is a new sound. It’s the ice machine they used for the ice blanket. He was agitated. He said Off! Archer was uneasy and thought it was still on. I looked at the monitor on the ice machine, still on because of the temperature probe in Archer. He was then at 96. He was still dropping. I took a picture with my iphone of the unhooked tubes from his body to show him. I said it must still be cooling the hoses because it ‘s in standby mode but the hoses are not attached to you anymore. He seemed satisfied.   I went to ask if they could warm him up. What an awful feeling to be at the mercy of people taking care of you and getting mixed environmental messages that create doubt when you are helpless. They came and wrapped him in a warm blanket to heat him back up. The ice machine did too good of a job. To ease Archer, I reminded him of how well his body was working. Truly, the machine iced him and his body responded. The warm blankets now were wrapped around him and his temperature slowly was on the rise.   He was just so pale and when he closed his eyes, it was corpse like you see in a funeral parlor, freaky and I asked the nurses why he was so pale. They said he was just cold. We were well into the night. We settled in to rest awhile.   They started him on a broad spectrum antibiotic unfortunately and fortunately. I’m learning over and over and over that every single decision has another side to it in trauma care. I pray there is no bug that comes along.   Archer’s room is also ice cold; I really think less than 46 degrees last night, so I have to call upon our camping tricks and I wrapped up and put a blanket around my head to capture some of my own body heat. I keep asking why they don’t put a beanie on Archer like we do when all the babies are born and their little bodies are learning to regulate outside the womb. They say they’ve never done that in trauma. I know some of my ideas are probably not well informed but it just seems possibly helpful. Who knows, maybe not.   While Archer was battling to regulate last night, I read texts in the dark. I am so touched by stories and verses you send me. Thank you. I really love you all so deeply.   In the pre-dawn, they told me Archer needed 2 pints of blood because his hemoglobin was 6.8. I asked what the scale was so I could understand. She said yours and mine is about 13; we get concerned in trauma if it’s below 7. I asked how much blood he lost in lung surgery: 200 ml. I asked how many ml are in a pint. 250. So where did he lose the other blood? She assumed from the draining chest tube. I think that must be why he looked so pale and thin. I am learning.   Billy returned in the early morning from Baltimore where he went to help Dewey get settled into his new dorm in college and he happened to be there for the amazing prayer vigil, totally spontaneous and such a blessing he could be there for us. We know so little about the world outside our hospital room and the 50 min drive that connects us to alternating sleep in Cape May. It was so good to see him. It felt like forever that we had been apart since I had had two days away mid week checking out rehab facilities both in-patient and out-patient and a day mediating. I had wondered if I could mediate well. It was an elixir actually; I so love my work and my clients, even difficult clients because I know it’s just their pain that makes situations hard. Most didn’t even know about Archer or if they did, they didn’t say anything. But two clients did and kindly said they were sorry to hear. I felt my insides get a little quivery at their kindness. I smiled and said I appreciated that. I wanted to stay focused on them. But I ventured to put out there that if they were open to saying a prayer for us, to please do so. After all, Christian or Jewish or even non-believer or once believer, there’s one God that connects all of us. We all need Him really. He’s always there for us in our sorrow and our joy, even if we turned away from him for awhile. He always welcomes us back because he is forgiving. I believe that so much because I have felt it over and over again at those times when I dissolve or I stumble, or I’m not the person I know I can be. God’s grace helps me pick up the pieces again and He loves me right through it.   Billy and I are trying our best not to stumble too badly as we are faced with such big decisions related to Archer’s care like our house, where we live, our company, my practice and our non-profit we were just launching. I am face to face again with so much Unknown, so it’s like Archer said a few days ago when he was stronger: one day at a time, one foot in front of the other.   Which reminds me to tell you of something else last night.   Amidst all the fever and chills, Archer summoned me in a quiet period with his clicking sound he makes with his mouth, like you’d do to giddy up a horse. He learned that from his Uncle Will. I assure you, this ol mama horse gets moving when I hear that giddy up click! Again, he’s so clever that he figured this out as it’s the only sound he can make. He clicked for me around 4am with a mouthed request to take his arms out from under the blankets the hospital had him muffified in the last few hours. Ok, I took them out. I noticed how his once large thick strong hands that are very unique to Archer in our family are now very thin and wan. It actually startled me because they are also so pale as is his face. He was very serious. He had his eyes closed. He then mouthed that he wanted his arms stretched. I stretched them for him and I was really afraid I might hurt him. I asked if it was OK. He butterfly nodded. I waited. Still with his eyes closed, he mouthed to me to watch his left foot. I moved to the end of the bed and did so. In the semi darkness of the room lit by the numerous glowing electric monitors, I watched intensely.   Nothing. He opened his eyes. I told him to try again. He closed his eyes and did. Still Nothing. He opened his eyes. He nodded acknowledgment about the nothing. I lifted his left foot and massaged his toes and kissed each one and told him, In time, Arch. In time. In time these feet and toes will walk. He always smiles when I massage and kiss his toes. This time, he also smiled but it was so weak. As he closed his eyes again, I said, It’s all in God’s time, Arch, you know that. He nodded. I added, And we have all the time that that will take. Right? He nodded.   Good.   I let him be, I checked the monitor readings and crawled back under my 4 blankets and wrapped my head in another. Time. God’s time. I marveled how in his clear physical weakness, he still had the heart to try in the middle of the night to send messages to his foot. Those tries are not in vain. Isn’t it amazing that he is trying like this. Archer the lionhearted.   Then I felt my hot tears again. I know he will walk again. I just know it. It might not be until he walks into Heaven. But he will walk.   And, as for our time on earth, we believe in miracles. We just don’t know what they’ll look like or when they will happen. But it can happen. God’s time. Please pray for Archer’s strength that he can be transported soon so we might start the intensive rehab that is necessary and that awaits him. Please pray that our family makes the right decision as to where that is and that we stay strong. Please pray for Archer strong. Please pray to the blessed mother Mary. I honestly believe Archer is being held and fighting with love and determination to overcome these incredible physical barriers because of the energy field of your collective praying.   With gratitude, Amen.


Friday, August 28, 2015   8-28-15 DAY 24 Friday For the first time in over three weeks, it appears Archer is resting for a period of time. He is thin. Estimated he’s lost 15-20lbs, not surprising but heartbreaking on his initial 240 calories a day drip diet and now his 1500 calories a day feeding tube, with the loss of a day for every surgery he’s had under general anesthesia which have been four. Along with weight is the loss of muscle. It’s so important that his body is strong enough soon to support him in a safe transport and to get him started on real rehabilitation before he atrophied much further. Please pray that we make the best decision about our next steps and rehabilitation choices for Archer since we need to decide where that is very soon. The trauma ICU hospital here says there is nothing more they can do for him at this point as we near 4 weeks. We are also waiting for him to be strong enough for a conversation about it. Please pray for us today as a family that those conversations are guided and inspired by the energy field of God’s love which comes through you the prayer warriors.   We absolutely feel the power of your prayers.   I saw a picture of the prayer vigil last night. Thank you for sending. Wow. It was amazing. You are so amazing. I also saw a clip from the TV station today. It’s attached for those not there. (here) (and here) Paula, I am so proud of you and Dad, and strengthened Dewey that you could be there too. Everyone there, and everyone not there physically but there in spirit, is amazing. You all are amazing. We are so grateful. Please do not let a day go by without feeling our gratitude. God will surely bless you.   Archer has not seen it yet but I know he is feeling it as he is in a deep place healing right now as he sleeps. As he came out of the anesthesia last night, he desperately wanted water which I swabbed In his mouth and over his tongue with a little sponge and a suction so he would not asperate. He mouthed to me thereafter for nature sounds and a reminder plea of ‘very quiet’ as I asked each medical person to please whisper. He also did not want any movement or touching and was in excruciating pain that was registering all over his upper back from I suspect the two large tubes in his right side. All of that was happening at the exact time of the prayer vigil. I left him in a warm blanket draped around his head like an Egyptian Pharoah as he closed his eyes for a deep rest. We will await his mental strength to return.   I wanted to share with you that the tree in our backyard that shed her leaves and wept with me many days ago is alive and very green this morning as I exited our outdoor shower. Isn’t that remarkable. One of the Cape May angels mowed our grass which mulched many of the fallen brown leaves so one would hardly know that tree’s grief unless you looked closely to the small traces around her truck. Here’s a picture of her beautiful green boughs today, thinner but still green.   IMG_8645   Last night as I drove home after Pete, Megan and Dutch came rest bedside with Archer for the night shift, I had to stop for gas. The law in New Jersey requires an attendant. It was late. The Muslim man who pumped my gas asked me in his Arab accent, Heading into Atlantic City? No, I replied, as he headed to finish his job. He returned from pumping my gas and handed me my credit card and receipt. I said Thank You and I started my car engine. He remained standing outside my window. He said, Ma’m, please tell me how I might help you? I was struck. Really struck. I turned and we looked right into each other’s eyes, his so kindly behind his glasses. I said, I imagine you pray. and if you don’t, perhaps you might consider saying a little prayer for my son. He replied, Yes, mother, I already have since I met you.   Angels. Good people. We all have so much capacity to extend love to each other. I am a grateful recipient. Thank you. Our family thanks you. Please pray to the blessed mother Mary, a quiet prayer today for Archer’s strength and our discernment about our next steps for Archer’s rehabilitation. Amen.   8-28-15: A Morning Message from Louise   IMG_0127   Oh my goodness. A friend of Archer’s from his school, McDonogh, just sent this photo (above) of a prayer vigil held tonight (*last night, 8-27-15) at Paula’s school, the Friends School. It’s a sight I will hold in my heart forever. I can’t imagine. Such love. Archer is very loved. We all need each other. We really do. Amen.   Here are three other pictures of the vigil, taken by family friend and photographer, Mary Carole Curran:   Curran_2015-08-27_6223   Curran_2015-08-27_6241   Curran_2015-08-27_6262


Thursday, August 27, 2015   8-27-15 Surgery Update. 6pm. Alleluia! We’ve been on needles and pins wondering why it’s taking so long but having faith. Archer’s cardiac thoracic surgeon just came to find me with the news that the surgery was challenging and complex ventilator wise but with a good outcome! Thank you, God and Our Lady. They had a hard time keeping Archer’s oxygen saturation high enough. The put in a bronchial blocker, gave Arch time to rest and regain between each move and he did very well. He entered surgery on the highest ventilator setting (not good) and went through surgery at 50% (much much better) and with only one lung functioning which shows he actually has reserves! Go Arch! So he’s a lot better off than some might think! Only downside reported is that he does now have not just one large plastic tube in his side and insides but a second one even larger so I’ll call that his hose, used for drainage. Hopefully both will no longer be needed after 4 days. And, the surgeon added, his lungs, like his heart, are very healthy looking. Our lionhearted son. Thank you to all the believers including his surgeon. I am waiting for him now in his room. Thanks be to God. And to all the Prayer warriors and Archer’s Army. We are winning this fight, one battle at a time, fighting with love and faith. Sending you love. Amen.   Update at 2:15pm: Surgery set for 2:30pm. About 90 minutes. We know what we need to do! Prayers up! sending love   3:00pm: Surgery has been delayed because Archer’s oxygen saturation rate is dropping too low. Trying a nebulizer ( *a “drug delivery device used to administer medication in the form of a mist inhaled into the lungs”) in his ventilator hose through the trache.   3:20pm: They just wheeled him flying down the corridor for surgery. Will be in the OR for 90 minutes. Archer Strong!   8-27-15 DAY 23 Family & Friends update.   Prayer warriors: Another surgery today. This time video assisted thoracic surgery to repair a tear in Archer’s right lung. It’s an “add on” so we do not know the exact time, likely this afternoon. They continue to try to wean Archer off the chest tube to his lung to a setting called water seal and to get the PEEP setting on the ventilator to 5, both conditions needed for him to be stable enough to be transported. They brought the PEEP to 6 yesterday which he seemed to tolerate until they put the chest tube on water seal, the next step to taking the tube out. This move plummeted his oxygen saturation to a low no one is comfortable with which is a pattern for more than two weeks now.   The regular weaning of the left lung had some back and forth but was then successful. But the right lung continues to be trouble. Archer’s temperature spikes to 103.8 also continue to be trouble. They said he’ll never be transportable from ICU here if they do not do this to try to get him off the right chest tube which his lung requires because of what they believe is an air leak in the lung that will not repair. When I asked about why the constant bubbling yet with intermittent not bubbling that I see in the tube line, the surgeon explained to me that when its not bubbling, it’s likely Archer’s lung repaired itself, a number of times in fact, but that the healed hole is blown open again by the pressure of the ventilator. That breaks my heart for him in his struggle. His body is trying so hard to do what it is naturally meant to do. So, as I now would understand it, this situation is not from the c5 trauma itself but is a result of being on the ventilator. Wow. This is the very reason why we ask about alternatives to various pain and other meds since one need or problem often begets another problem it seems to me. So it is with the ventilator he needs for life support and the creation of the thorax in the lung as a result. They wonder why the situation persists so they need to scope to see what is preventing the intermittently healed hole in the lung from expanding to the walls of the ribs/chest as it should. Is it tissue?, fluid?, adhesions?, and staple it as necessary because they won’t risk a mistake in transport where the large plastic lung tube, which is literally stuck straight into Archer’s side like a lance with a hole the size of a dime, might become dislodged. This is very possible the chief said because the tube is big and long and unwieldy, about 10 or more feet, feeds into a machine that a tech needs to walk along side him to carry for any move, and there would be many moves of his body in the transport process that could lead to a situation we do not want (code for a fatality). In addition to the lance like holes that will need to heal on both sides of his abdomen, this thoracic surgery will leave 3 more scars on his right chest. I said to Archer I guess that’s the price of admission. He gently nodded. He also mouthed in the middle of the night if I could play more nature music very softly. He and his body are trying very very hard.   Please pray Billy’s and my consent to this surgery is the right decision. Please pray we can leave this trauma ICU soon. The chief of trauma said Archer is beyond their ability to care for him now. So…dear family and friends and Angels, if we could all collectively imagine today Archer breathing freely and unfettered and at ease…really imagine it, right now. Since we all know the joy of what that feels like, really feel into your whole being that joy that comes from your breath and your easy capacity to fill your lungs with air on the inhale and the relief and peace you feel emotionally on the exhale. Notice even once today that solid and expansive emotional feeling you have when you focus on one or more breaths. And let’s create the energy field for Arch that will support his recovery to move off this lung tube no longer needing it and eventually no longer needing the ventilator. And, with this feeling of well-being that I am doing with Archer right now, pray with this emotional feeling. The blessed mother holds him close as she intercedes. I know this and so do you. He is being held in her loving arms. Through God’s beneficence, Archer is alive and his body feels strong enough to keep fighting and his heart is strong not to give up. Please feel that and please don’t give up on anything hard today. We have so many blessings all around us. And thank you again and again for your love and collective prayers. Amen.   IMG_0069   Archer Strong!! Xo


Monday, August 24, 2015 at 11:00am   Archer was wheeled to OR for pacemaker surgery this morning. About 9:50am. Please say specific prayer that Archer’s ability to absorb oxygen during surgery remains high. And angels on the cardiac surgeon’s hands. Amen. — Surgeon just came. All went well. They found a good vein with the first stick. Alleluia. We will not need to be on pins and needles in the day or nighttime now about his heartbeat. He is lion hearted. Just needed a little help. Amen.


8-23-15 Sunday night at 9:30pm:   Family & Friends Update Ok, prayer warriors. Here we go: Archer is very weak now and feverish again being iced again. He had surgery today for his lungs and he will have another surgery tomorrow for a permanent pace maker for his heart. It’s an “add-on” surgery so it may be in the AM Or PM. Please pray that angels will guide the cardiac surgeons hands. Dear God, it is through you that Archer’s body, formed in your image, will find strength to come through this surgery without breathing complications. It is through your love for us that we continue to pour love out to Archer and each other. We are all strengthened. You did not give us a life that was not good and troubles that we cannot manage if we place our trust in you. Archer strong.   Sunday, August 23, 2015. Day 19   This post will include updates from the past few days. Thank you and love from the Senft Family to yours!   I am shattered again watching our dear Dutch see Archer for the first time. He’s been away at camp a month in Maine, grew at least 2 inches and is now taller than I. While we called Dutch’s camp immediately after the DAY 1 midnight surgery to speak with Dutch and let him know Archer had had a serious accident in the ocean and broke a part of his neck, we knew so little. We had told him to stay at camp and we could touch base after their Color Wars Sports Olympics that he had talked about throughout the winter and we know meant so much to him. I remember awakening on DAY 3 with the nagging feeling that it was important to make sure it was not our decision but that we gave Dutch the decision to stay or come home, and that we were not forcing him to stay. Billy and I scripted my short statement so I would stay strong when we called him again. Dutch asked me if Archer was going to be ok. I felt the hot tears well in my eyes as I gritted my teeth willing myself to take deep breaths before responding, Yes, my love, he will, we will wait to see how he does, we will need you to say a few prayers for him. Dutch asked if he could call me every day and I said of course, but it might be a little hard since he’s in the woods and, it also wasn’t necessary as we would be taking care of Archer, he could help when he came home and we wanted him to have a wonderful time at camp. By that point, although we then knew that Archer was paralyzed and that the doctors had referred to Archer as a quadriplegic, we still didn’t have a full comprehension of Archer’s situation as we gave Dutch the option to come home or stay. I was trying hard to listen, to be open to God guiding my intuition and giving me strength to stay grounded about the best way to approach this with Dutch. I recall being concerned and thus careful that I didn’t want Dutch to ever think we kept something very important from him that would forever tinge an otherwise joyful experience like camp, or that would ever cause a breach of trust between us, or that would ever plant a seed for suspicion in the future for his going away for anything wonderful for that matter if he thought something important would be withheld, and I wanted to honor that he is now 13, and becoming a young man. I also thought that maybe we actually would be out of the hospital before his camp session ended and thus we might actually call camp to arrange to get him early so that he would never feel he missed the experience of all of us gathered together here in Atlantic City for Archer. What fanciful thinking that was I see now. When Dutch confirmed with me that it would be ok for him to call me daily, and I confirmed of course but it could be hard since he was in the woods, and it certainly would not be necessary as we wanted him to have a good time, he asked if he could sleep on his decision. I said of course.   The next day, Dutch, the camp director and we arrived at a collaborative decision for Dutch to stay at the camp he had been looking forward to all year. I confirmed that if he changed his mind, Dewey would drive up to get him in a heartbeat. I recall Dutch asking me tentatively before we hung up, And Mom, if I stay until camp ends, Archer, you and I are still going to see Uncle Will in Saratoga, right? And my saying, No, darling. Not this year. We will need to be with Archer here. There was much silence on the phone as the gravity of the unknown seemed to nonetheless still carry great weight.   So, last night when Billy, Dewey and Dutch arrived at the hospital, I felt the stabs of a thousand more deaths as I held my sweet darling 13 year old who about collapsed in my arms when he saw Archer who was iced with a 103.8 fever, very weak and unresponsive. It was pretty awful really. Please please, Lord, have my children make it through this. All of us. All of us together. Billy and Dewey had driven up to get Dutch to talk with him in person and prepare him tenderly on their long car ride back. But what is enough preparation? Never enough for the up close and personal reality. And how is it ever tender when your flesh and blood brother whom you so dearly love cannot feel your hand on his, is a million miles away in mental connection, and in a body that you begin to realize may not ever work again. Dutch was lost and I felt his devastation sharply and his incomprehension numbly as he could hardly approach Archer, his closest in age brother who teaches him so much and loves him so much, and whom he in turn adores. And I have no definitive answers to Dutch’s softly uttered questions of how long, will he be able to, when can he, and on and on. I think the only thing that held us together as I held him close and we sobbed outside of Archer’s presence were mother Mary’s arms around both of us, giving me the strength to whisper in Dutch’s tear moistened shirt, It’s ok to cry, it’s ok to be very sad, we will also be strong because GOD MUST HAVE A DIVINE PLAN for Archer. He does, my darling. We just have to allow it to unfold.   But as you know from yesterday’s update, we are back to fighting death again. How can that be.   I am aware of exhaustion setting in. My sleep for any length of time at home now is almost impossible as I awake grabbing my iphone to see if there is a text about anything else that has gone wrong in the hours of being away. With all the good things of Thursday’s tracheotomy surgery and Friday’s chair, Archer has bottomed out two more times and the doctor’s are not sure of our next steps. It’s been a hard last couple days and my elation is now tempered again with a wonder, When will this dipping into the narrow space between physical life and death cease? I pray to Mary that Archer will get over this hurdle of heart and lungs so that we may move to the next step. I pray that Billy and I will be sustained through the odyssey of watching him dip and soar. I do not want to get numbed by the gnawing need to temper any momentary elation.   Please pray today. It is Sunday. Pray to Our Father, pray to our blessed mother Mary. I know she hears us. We need Archer’s body to feel strong. His fibers to feel and remember the joy of movement with ease.   8-22-15 Saturday DAY 18   I am sorry this will be long. I have so much to update you on.   How can it be with all the progress of the last two days and my saying to myself how good it is to be out of the woods of darkness that again we can experience new terror, this time during the day, followed by another in the night.   I now see that yesterday’s hiccup was really a foreshadowing for the night to follow.   On the heels of the quiet excitement we felt Friday morning when the routine morning chest xrays showed no pneumonia or pneumothorax in the lungs and they thus lowered Archer’s PEEP ventilator setting from 10 to 9 and also removed the wall suction from his lung tubes—yeah! So awesome!, within hours, Archer’s body wasn’t able to sustain this progress move. After a routine lung suction, his heart rate and blood pressure plummeted. Flat line. It only lasted 2-3 seconds and the medical team raced in and Archer’s body fought back and both his blood pressure and heartbeat regained on their own, but it was very scary as dear Pete and Megan were there having to witness and experience this fright, midday. It was so unexpected. When Pete texted me, I wondered, Dear Lord, how long does this last? I also felt helpless even with Pete there, our anchor who has been giving Billy and me respite, and on whom Archer very much relies for his blend of kindness and competence and gentle grounded presence. The medical team made a decision to leave the PEEP at 9 but to hook Archer back up to the temporary pace maker which is a step in the wrong direction but one we will gladly accept to keep him alive.   Another chest x-ray, yes, Archer can get more than x-ray one every single day that we are here but they told me there is no other alternative in medicine at this time, showed the lungs and heart to be in good condition with no more pneumonia having set into the lungs. They thought the unexpected incident must be related to his recovery from surgery linked to his type of c5 burst injury. They performed more chest percussion beating on his back with their karate chop hands and then with a machine. They told us they thought it was just a little hiccup and every thing looked good thereafter. One of the Cape May priests came and did an anointing of the sick for him. Pete and Megan read Archer more of his cards that he adores, the room was freshened with essential oils and spiritual waterfalls music playing softly on Pandora, and the window shade up enough to let in natural light. A Cathedral Mom arrived bearing incredible gifts of construction paper pennants on a twine roping each lovingly hand decorated by a different Cathedral or McDonogh or Gilman family. They are like prayer flags. We strung them up in the room and it is very joyful. Archer loves them along with the Archer Strong posters from the McDonogh school mates. Archer spent some time in the chair and all was good.   Paula then arrived from Baltimore Friday evening and took over for the wee hours shift so Billy and I could sleep as Billy had to leave at 4am to pick up Dutch from his Maine camp and I promised I would meet Paula back at 8am.   Paula was a real trooper with great strength. We really thought it was all a hiccup. It wasn’t. Archer again went to flat line across the monitors, this time for 6 seconds, before his own heart resumed, assisted by the temporary pace maker. It happened early morning again at that low 3:30am hour. They are thinking it might be seizures. She texted me. I wish I could fly. I commuted up the Garden State Parkway, did our usual car exchange in front of the hospital (because the hospital parking lot, shared with Ceasar’s, is now often barricaded and full due to the many big concerts here in AC in August). Paula and I said our good byes and I arrived back in the room to a gathering of new doctors, this time the chief of pulmonology along side the trauma docs. They were all very serious and quiet as they said that Archer is very unusual to have him thrown into near cardiac arrest when they adjust his ventilator settings. But we have to adjust his vent settings if he is to make progress out of this trauma ICU.   They said they usually don’t see this in other spine injuries. Please pray that the medical team will discern the right research, the correct course for our next step.   I had many observations to share with them re what Archer reports and when his heart beats strong and when it doesn’t, and they said he may be suffering seizures that may have been the muscle spasms he would report to me in his neck and shoulders when he asks us to massage his shoulders, and there may be a better medication than the one they have given him. They would try some different medication. I asked if there is anything we should change, do, not do. The head of the team noted that based on the monitors, Archer clearly does better when he is stimulated in conversation with a family member, and as we spoke his heart monitor showed a stronger beat, and they noted the quality of the room is very good for his recovery and asked me to please continue. I couldn’t believe their notice. I felt for the first time that some integration might be happening. I felt gratitude. I know it was a small miracle unto itself. Since Archer’s situation was complicated, I then asked if they would be open to other eyes on the situation from other physicians we knew at UMD shock trauma and Johns Hopkins. Not that they would be giving opinions per se but so that they could review and exchange their best thinking. The medical team said it was too much red tape, but I said we the patient would authorize it. Wouldn’t it be helpful if we could all work together, not at cross purposes but in concert, for Archer’s benefit. He agreed. I felt God was present with us.   Then the head of the cardiology came in to visit and said he recommended a permanent pace maker with surgery for Monday. He said it is the only alternative to try to get Archer over this hurdle out of trauma ICU. A permanent pace maker for our 17 year old son who is unable at this time to breath or have his heart beat on his own.   Prayer for a creative miracle. I taped it to the door outside of Archer’s room to perhaps be noticed upon approaching, and on the linen closet inside Archer’s room to perhaps be noticed upon entering and exiting. It essentially asks God to touch Archer with the same miracle-working power that He used when He fashioned Archer inside his mother’s womb. As surely as God created Archer in His image and likeness, He can also recreate him now and restore his health.   Archer is winning this battle.   I got his room moved. We went across the hall and with the perfect timing of Baltimore visitors, family and McDonogh friends, we moved into a sunnier room, a larger room, a room with morning sun from the east. Baltimore Cape May friends sent a nature poster of morning sunlight streaming though forest trees, the one image of many that Archer chose as his favorite. It is now on an entire wall of his new room as it is large and wonderful. He is fighting a 103.8 fever, is iced but we will win this with the intercession of your prayers. Please pray today. Please continue to keep the blessed mother close to you. She is close to Archer. I asked him if he feels the energy of the collective prayer and he said yes. Thank you. Thank you, dear prayer warriors. Be good to each other. Amen.   8-21-15 Friday DAY 17 and 8-20-15 Thursday DAY 16   Where do I begin to update you? All the amazing I mean truly amazing progress Archer is making: Yesterday and again today sitting, strapped into a chair for about 3 hours a day, upright!; his heart strong in the low and mid 50’s, still low (bracardial) but getting stronger, the food tube that contorted his nose for over two weeks but kept him alive is now moved to his abdomen in a smaller tube, still keeping him alive; the large ventilator hard tube is out of his mouth and rerouted to the new opening cut in the front of his throat from the successful tracheostomy surgery yesterday; his freedom and ability to move his lips and thus ability to mouth words that we try to make out and match to the budding expressions he is beginning to make on his face as he gets stronger. So much good. So much to thank God for. I have been rejoicing for a day a half and all that has come with that, with new doctor meetings, the ability to make calls to insurance and physicians for the first time, in between the usual moment to moment needs Archer can express, noting his needs changing, paying attention to new nuances, and learning the new settings on machines to study and become familiar with.   Archer, so responsive, is weak but so full of inner life, and his funny side comes through in his comme ci comme ca expressions as we gently babble to him in light conversations celebrating that he is so responsive. The spiritual music and lavender and peppermint is still high medicine fostering his repose and life. It takes vigilance daily to keep and maintain it and we are all in. If it were possible at this time for him to have any air to speak or laugh, he certainly would have, but settled for a sweet rolling of his eyes when at one moment I couldn’t make out for the life of me the words he was forming with his mouth and I leaned my ear so close to his lips to see if I could hear his tiny whisper that I practically mashed him when I realized, as if an ephiphany, that no matter how close I got, there is no whisper, because there is no air. Not even a teeny tiny weak word. We made it a smile moment but it actually broke my heart, again. The gravity of it all still takes me by surprise at times. Later, the doctors said it may be a long time until we hear his voice. When they said that, Archer and I exchanged knowing glances and I said to him, Someday…. He gave me a slow motion wink.   They also took one of the lung tubes off this afternoon which Petey witnessed, and he got his hair washed for the second time, a real luxury. He still cannot swallow or cough due to the spinal cord being severed along with the c5 break yet he continued to ask when he could have water which we think is all very good sign. I continued with the ice cold super tiny mini sponges on sticks, what we now call our mini lollipops, which I have figured out become softer and also absorb a lot more water if they are washed in soap and reused, just like a kitchen sponge. Archer relishes them and the nurses approve, because it’s ok medically, because it is a method that Archer has devised, the fighter that he is, to use the small amounts of water to gag and thus loosen up and get more gunk out of his lungs, which he practices all day long, and honestly because yesterday we did no less than 100 mini lollipops, and they can’t keep him supplied!   It almost bordered on sheer delight when he mouthed to me with a wry Archer smile the word Two. So, in went two mini lollipop sponges at a time. He got so much pleasure from the soft icy feeling pressed into the inside cheeks of his mouth, first the left, then the right. We both got so carried away with the new lollipop joy and our ability to “talk” with each other through lip reading, that Archer mouthed to me, Simply Orange, which is his favorite orange juice. I inquired about when we might have any other liquids and was roundly brought up that even more water than what we are doing now is a no no since he neither has the ability to swallow or cough and anything other than water pressed into the sides of his mouth could go down his throat with no way to clear it and could also get into the air tube of the ventilator on the trache and could cause a bacteria infection very easily. That was a data point that was not so refreshing. Another nurse came in to remind us that it would likely be many months before Archer gets (even) water. Those nurses are not part of what we see as Team Senft. It was unnecessary for her to come in and say this. We know that. We also respect that she felt she was doing her job. We also hold Maybe. Maybe not. Archer is determined and the Lord is with him. So, we continued with our lollipop tiny sponges and I invited him to close his eyes and imagine he was drinking orange juice and how good it tasted and felt and made him feel happy. I asked him to feel that feeling in all of his molecules. I closed my eyes and tried to feel it with him. It seemed to be enough, at least for that moment. He is such a good kid.   Please keep praying. I’ll send you the Prayer for a Creative Miracle. Please pray it for us. We love you. I love you. Archer loves you and we feel your love. Amen.   Thursday, August 20, 2015. Day 16 at 10:35am   We offered a blessing over his surgeon’s hands that they might be guided by Archer’s guardian angels. Archer is successfully out of surgery. Just wheeled from the OR back to his ICU room. He looks good. We will wait for him to come out of anesthesia. Thank you God. Thank you, prayer warriors. You have stormed Heaven again and, God has heard you again. This is an important milestone day in recovery out of ICU. We will hope he may be able to talk in a few months. Food and drink maybe then too. Maybe not. But we are believers! Sending love. A prayer of thanksgiving for today. Amen.


Wednesday, August 19, 2015.    Alleluia! Your prayers are being heard, and high nature vibration in the room are working!! Yesterday was a significantly different day for Archer as they slid him into a chair so he was strapped in upright AND his heart loved it. He went from the 40s bmp to 58 bpm most of the time in the chair!! And his eyes were bright and we spent the better part of the day with the ice-cold lollipop sponges pressed into the cheeks of his mouth and head massages and scratching. There is still sand from the beach in Archer’s thick, beautiful mane. (The nurses love to wash it now that his neck surgery incision is healed, and the nurse duo we now have, and have had consistently for 2 days, told me that they had to fight to get to care for Archer because he’s Archer, and they marvel at his sanctuary which is truly a different world from the one outside the closed glass doors and drawn curtain to the unit.) Best of all, she’s not only very competent, but she’s a believer. We want to surround Archer with believers of what is possible. And ….drum roll…they have scheduled Archer for a tracheotomy surgery in the OR tomorrow at 9:00am* (changed from before). So, prayer warriors, we know what we need to be doing at 9:00am* tomorrow! Sending lots of love. Thank you God for strengthening Archer and this significant turn that happened after the McDonogh assembly and all of you in Archers Army praying together and holding him, and we hope each other, in good intentions. His army will be one of a different nature disciplined by Love, Kindness and Forgiveness.   Here are two more pics of Arch and his brothers! He helped Dutch tie his bow tie in first, and the boys are at a Manchester City FC soccer game (the family favorite team) with Dad in the second.   IMG_0043     IMG_0060


Tuesday, August 18, 2015

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.

 


 

Monday, August 17, 2015

FROM LOUISE:

Family & Friends Update: Archer is resting having had a good night after two and a half difficult but now promising days. He tolerated the turnings without his vitals dipping so low. I have wondered how long the fight with life and death lasts. Your prayers are being heard. I know they are. He knows they are. Please keep praying.

 

My brother and sister from Chicago and Bloomington, Illinois, just left, pulling out of the driveway after 3 days of coming to help love and support Archer, and giving Billy and me this day for mediated dialogue and decision making. Please pray for us on that.

 

In the hospital I saw a glint of tear in the corner of Archer’s eye when Lillian told him goodbye. Now they leave me too as they should and need to. Life moves on. But I feel like my heart is breaking and I am sobbing as I write. It’s that same feeling I remember having when I would be pulling out of the driveway in Springfield during the college years, leaving Mom after my being home on a school break as I headed back to UVA. She would be telling me goodbye and that she loved me and I would be telling her goodbye and that I loved her. I would slow the car to a crawl. Her eyes would well up, and then my eyes would well up. I’d stop the car.
She’d shoo me away to go on. I’d begin to pull out again. My eyes would sting from my tears as if I’d fall apart if they leaked out and I couldn’t let her see that. As I neared the end of the driveway, she’d wave at me again and I’d wave at her again, like little kids, both of us trying to be strong for each other, and then I’d set off for my long journey and just fall apart, the hot tears streaming down my cheeks, my chest heaving up and down already feeling the achiness of missing her as if I’d never see her again. I knew it wasn’t true. I believed I would of course see her again. But it didn’t make it any easier in the moment of feeling like the cord that connected us was severed, severed by growing up, severed by life. I am now familiar with that sadness, longing and panic. I also feel very alive when it comes over me in waves like it did and is doing now. It’s just as sharp, just as hot, feels just as severed. I am aware that the intensity is not as long-lasting now as it was in my youth because now I have practiced methods of deep breath work to rely upon which grounds me. But the feeling in my heart and chest cavity is the same. Just like then, I know I’m being held together by a knowing that I know what it is like to love and be loved. I so miss them already. They were so good to come. So good to come so far. Everyone is so good to us. We have the most wonderful family and friends. Please be safe and alert my dear ones. And thank you, thank you so very much.

 

Please pray again today. Pray a rosary. Pray in thanksgiving for good people, and for all the good things God has given us. Pray for Archer’s heart and lungs, pray for his healing, and ours, and yours. Pray that in our brokenness we find restoration through God’s love and mercy and forgiveness, which we give each other in His name. We really need each other. We all really really do need each other. Amen.

cape liquors


 

Sunday, August 16, 2015. Part 3 – A Message from Louise

 

Family & Friends Update.
Why has this happened?

 

Some of the scripture verses you have sent me via text make me weep. As I read the passages, my eyes sting with mixed sentiments of being gently consoled mixed with excruciating sadness.Even the tree in our Cape May backyard weeps for Archer as it sheds its leaves exactly over Archer’s very loved grass croquet course that he kept meticulously mowed this summer, rough and all, so he and his buddies could play midnight croquet most nights (well, 10pm in the light of the early moon with help of the flood light in the outdoor shower and a strategically placed lantern). I just picked up the mallets and balls that had been left littered on the course exactly where their players were standing when the first one hit the wicket to win the last game. It struck me as so odd upon my walking out of our outdoor shower, my first morning home on Day 3 after the accident, to see the yard covered in brown leaves. I couldn’t make sense of it. Why in the heat of early August is this large shade tree shedding? I looked around and up and down the yards along our country like small fields but could see no other trees shedding their leaves. It hit me.This tree that watched Archer day and night is mourning. I joined with that tree and wept some more.

 

I have pondered this and on Day 10 after the cardiac arrest, when I went home again to rest and shower, I was then not just left wondering but now startled and discontented as that large shade tree itself seemed to be dying with so many brown dried up leaves in its boughs. Please dear mother Mary tell me they are leaves like tears of sadness and not leaves of death.

 

Today on Day 13, after an outdoor shower, I summoned one of the kids to come and witness the most extraordinary thing. In the middle of the day, I could hear each single leaf falling. A feint little crackling sound. I swear that tree was talking to me. There were brown leaves all over the yard now, in a thick blanket. And the rest of the brown dried leaves one at a time came cascading down to join the others. And then the leaves stopped crackling and falling. All the brown leaves in the tree were gone. What was and is left in her branches is very green. It is as if she were finished weeping, for now, and there is still life. I am hopeful.

 

And I wanted to get back to the hospital to see Archer. It’s so very hard for me to leave him. I have so much joy being with him. As I continue to search and ask God to show me the path of why this accident has happened, happened to our “renaissance man” in our cherished Cape May in the ocean, no less, the ocean that has provided us so much peace and refreshment over the years, I know God has a plan for Archer. He must. It is my job to nurture its unfolding. Today, I hold the possibility that maybe one of the whys for this tragic accident is the opportunity we have to respond with unity, the love we can bring each other.

 

Your outpouring of prayers for Archer, for me, for Billy and me, for our family are being heard. Oh Lord, please bless each one of the dear people who have responded to Archer by being so kind and generous with their love and taking time to pray for us. What you are bringing to us is very powerful. Very palpable. I am able to be alert and to see what I need to do to protect Archer and to create, in partnership with each of you, and in partnership with a medical team, held in the palm of God’s hand and mother Mary’s arms, a sanctuary for Archer to heal.

 

As for Archer’s state today, as Billy may have told you, we believe we are moving in a good direction, very very slowly and tentative, but in the right direction. I still feel we are sentinels, Archer’s guardsmen and warrioresses day and night, especially the night and early dawn. While he seems more delicate in face and body (I’m sure he’s losing incredible weight despite the edema from the neck on down), he also seems stronger with his vitals and asked me when he could have water, a very good sign since Archer has understood he could not have any water until he was strong enough to get off the ventilator. It may be many months before he can drink or eat anything we are told. I know it is hard to fathom. But fathom we must. He has no feeling or movement from the neck down. It is not expected that he will. We believe differently. And we look for those in the hospital who dare to believe and have faith as we do that it will be different for him. He will have a meaningful life. He has a meaningful life now as you are a testament of.

 

I think he is experiencing new strength after two very touch and go truly life and death days, with staff on edge and no visitors.Today, we devised a solution of little square sponges on wooden sticks dipped in iced water (and Lourdes water) given to Archer which I press gently against the insides of the walls of his mouth and then I suction out the excess water with a little suction hose the nurses showed me how to use before any of the unabsorbed water has time to travel down and be swallowed, as swallowing is something he cannot do and which can cause damage to his esophagus and vocal cords because of the large tubes that are threaded down him. The feeling of cold water, a tiny comfort. He really likes it ice cold. Same way he likes his forehead packs and his face washes. We know because of his gentle butterfly nods. Knowing this preference, when he tested high in sodium from the food tube feedings a couple days ago and they had to flush his arteries, I asked if they could be flushed with iced water. Archer liked it, another butterfly nod. Amazing to me even in a 46-50 degree room where we don white hospital blankets as shawls while Archer remains uncovered to keep his temperature below 101.

 

He still needs a pace maker but not as often; they stopped the dopamine briefly and he was beating steadily on his own. While his heart beat even with help remains low in the 40’s bpm, he’s alive and breathing! Thank you, God.

 

While he’s still on lung tubes, his oxygen saturation remains strong. His PEEP on the ventilator has been steady at 11 for almost 24 hrs, with but one very serious scare, so we’re hoping he continues progress towards 8 for a trachetomy and the PT that follows. Since a day or so before his cardiac arrest he has not tolerated at all well all the turning and percussing. We’ve asked staff to allow him to sleep 2-3 hrs at a stretch without being awakened for something. When awake, he’s alert and communicative for brief intervals but seems more restless today. My intuition told me we needed a different room with more natural light and a different bed orientation. Since it appears we are now here for awhile, I scoped for a significantly good one and requested a room change to a sunnier room across the unit I noticed which is sunnier and has his bed facing E, SE. Until then, we have created a healing sanctuary in his current room.I’m trying to get his cicadian rythyms re established with the shade up during the day and the lights out at night with one of us watching him very closely in the darkness.  My brother Tripper fixed the sliding glass door to the room which we discovered had been off the tracks probably not used often actually, so we can now pull it shut behind the curtain to block out the unceasing sounds of buzzers and beeps and bells alarming 24-7. I found nature sounds, spiritual waterfalls, which we play softly on the mini jambox, and Archer likes it. His room environment can transport anyone now.He’s resting more peacefully. And the room is infused with freshness of lavender and peppermint and rose in an oxygen rich air. It reminds me of the botanical gardens Billy and I used to take the children to at the Smithsonian.

 

I also asked the staff if they’d help me by moving a little table which forms the base for a Feng Sui screen of sorts I makeshifted between his bed and the toilet and the human waste disposal, both of which are in a corner. So, as a barrier between that corner and Archer are now flowers from my garden, a bamboo plant in rocks that was a gift, and flower arrangement of Roses he received, and weighted on the floor as part of the makeshift screen is a bouquet of helium balloons he also received. That should provide some protection from the evil lurking in waste.

 

I have the Eucharist in our midst and we gather often around Arch to quietly pray the rosary while holding his hands. He also likes the St Peragrine medal someone sent and we pray those prayer sequence as well. So, we are creating a healing sanctuary in his room. We can now let in one person at a time briefly and keep closed the sliding door behind the curtain which helps to block out all the other noises and buzzers and alarms that go off 24-7 in trauma ICU. The staff comment it’s a first for them to see this but they all like to stop in and when they do, it is now incredibly respectful and, dare I say, even loving, despite the medical error three days ago which caused so much distress. Archer emanates love and forgiveness. Bless them all.

 

Please keep praying the Our Father and the rosary. Amen.

 


Sunday, August 16, 2015. Part 2   Families and friends back in Baltimore are gathering to make cards and rally in love to support Archer. Some pilgrims are traveling to see Archer, even though they understand it may only be for a brief, loving moment. Here are some pictures of those wonderful people. We are creating a healing sanctuary for him. Thank you!!!   IMG_0088              boys   IMG_0089            wrap     Sunday, August 16, 2015   Archer is really struggling with his sleep, and we are trying to help him rest every moment we can other than the times that he must be awakened for medical care, which is very frequent. The hospital is ironically a very hard place to rest and recover because of so many people needing to test and adjust and assess and get blood, etc. Not to mention the constant alarms and buzzers going off. As you might guess, this is very hard on Archer, who is also very uncomfortable since he is on a ventilator, pacemaker, food tube, and numerous other lines and devices. So, we have not been allowing him any visitors except immediate family, and even then only for a few minutes at a time. We are hopeful that he will be back in Baltimore by the end of the month. Thank you for your prayers and love for Archer and our family.


Saturday, August 15, 2015   Day 11. Today is the Feast of the Assumption. Please give thanks to the blessed mother Mary. Maybe be at Mass if you can. She hears each and every request.   For your prayer focus, here is Archer wearing one of his favorite colors, yellow. It was taken at Gramma Paula’s 80th birthday picnic in Springfield, IL, 3 days after Archer turned 17, and 13 days before his accident; he’s hugging his Aunt Margie. Here’s another pic in Gramma’s kitchen with his cousin Alice soon after our arrival in Illinois. FullSizeRender (1)                FullSizeRender (3)


Friday, August 14, 2015 Archer is resting comfortably with all vitals improved from this time yesterday. Billy and Paula spent the night with Archer watching Chopped and reading to him from the book, “Sous Chef.” Today is the first day where things seem to be steadily moving in the right direction. Archer’s spirits are better today. Please keep the prayers coming!