David Click's Blog

OUR LOVING SON

Alex Andrew Click
​
​April 3, 1999 - October 28, 2022

NO ESCAPE FROM REALITY

It seemed as if we had been ganged upon from multiple, unexpected, sources. It suddenly seemed Alex’s doctors had ulterior motives at the Duchenne Clinic at Cincinnati Children’s Hospital Medical Center, reasons other than the usual health screenings, needs assessments, and fist-bumps of encouragement. First, Palliative Care had deemed our cherished home wellness visits were no longer necessary and ended their service. Then, Cardiology refused to authorize Alex’s heart medications until they saw him in person, essentially forcing us into the Duchenne clinic despite the continuing pandemic. Then, Alex’s long-time Pulmonologist, the doctor we had most respected through the years, told Alex he must change his lifestyle, that the life Alex enjoyed was no way to live.
 
Whaaaat?
 
Alex sat dumbfounded at the suggestion, as did I. We couldn’t understand why Dr. Sawnani, Alex’s Pulmonologist for the past 15 years, disapproved of the world Alex had created while living with Duchenne Muscular Dystrophy. We couldn’t understand why Dr. Wilmot, Alex’s Cardiologist, sat alongside, silent and equally serious.
 
Because of muscle pain and spinal compression fractures throughout Alex’s thoracic and lumbar spine, movement for Alex is painful. Heck, resting is often uncomfortable as well. Lifting, turning, or moving Alex requires him to have grit, determination, and tolerance. Hoisting is tedious and delicate. Sitting in his power wheelchair is awkward, uncomfortable, and borderline absurd at times. When you find a position of comfort, you stick with it as long as possible and make do.
 
So, it’s no wonder Alex (22) has created a comfortable world within his small bedroom. It’s no wonder he chooses to stay in bed. He eats, sleeps, and everything else you can imagine…on his back…in bed…all day, every day, and has for most of the past several years. He watches movies, sit-coms, and Netflix series in bed. He plays video games alone or with anyone who will join him. He follows and chats with YouTube celebrities on his touch-pad computer. He texts or calls friends and family whenever possible. He talks up a storm with whomever visits. Through it all, he smiles, laughs, and loves with anyone at any time, rain or shine, good days or bad. Often, you’ll hear him laughing while watching a comedy show he’s often seen many times before. It’s a beautiful sound, by the way, and fills our hearts with joy.
 
God love him.
 
Alex’s lifestyle is not ideal by any means. Given a choice, he would be out and about and talking with everyone and anyone about anything. Seriously! He is an extremely social being, more than anyone I have ever known. He craves connection and, when he doesn’t have it, he makes do with what he has to entertain himself. I have no doubt he’d love to get into his wheelchair and go to movies, a restaurant, or a bookstore. I’m certain he’d love to visit friends or take a road trip to the next Star Wars convention wherever it may be held. But, he can’t. So, he doesn’t. He simply makes the most of a difficult situation while living with Duchenne, a horribly cruel, progressive, and lethal disease with no cure. Amazingly, he never complains.
 
Put yourself in his shoes…during an isolating pandemic, no less.
 
Really, just try.
 
In our windowless Duchenne clinic room, Alex sat uncomfortably in his power wheelchair while Dr. Sawnani straddled a rolling stool and waited for Alex to respond. It seemed as if Dr. Sawnani had tired of our approach to living with Duchenne. It seemed Dr. Sawnani had grown frustrated we had not followed his recommendation from our last clinic visit six months prior. Then, he told Alex to get out of bed and back into the world.
 
Alex fidgeted in his wheelchair and sought clarification. “I thought I was doing okay!” Hearing no immediate reply, he dared to ask. “Am I not doing okay?”
 
Typically one of the most compassionate and caring doctors we know, Dr. Sawnani’s clinical side took over in his response. He described how staying in bed severely threatened Alex’s physical health. He described how it compressed Alex’s lungs and diaphragm, making it harder to breathe, eat, and swallow. He detailed how the supine lifestyle Alex enjoyed will inevitably lead to choking as well as infected bed sores. He shared his belief that such lifestyle socially isolates and threatens the spirit, leading to depression and ultimately resignation to live. He then twisted the dagger by telling Alex - the most joyful soul I have ever known - that Alex is missing out on life and the world around him.
 
We were stunned. Alex did not know what to say. Heck, I did not know what to say! Sitting before us was the doctor we had most respected, the doctor who had generally assumed leadership of Alex’s overall care, telling Alex that he was doing it all wrong.
 
Thankfully, Alex held strong. “But I enjoy being in my bedroom. I enjoy watching movies and playing games.” Hearing and seeing no reply, Alex rebutted. His words reflected his confusion and worry. “You make me feel that if I stay in bed my life has no value!”
 
Dr. Sawnani just stared at Alex without expression and rephrased, “Alex, it’s really no way to live.”
 
I could not believe my ears. How dare they! How dare the doctors cast judgement on how Alex chooses to live his life with Duchenne. They are not the ones living with this damn disease 24/7/365! They can go home at the end of the day. They can escape Duchenne from time to time. I realize they often sees the dark side of Duchenne, the side where young men succumb to the inevitable in sometimes harsh and suffocating ways. I realize they are trying to help us avoid such a difficult future. I also realize perhaps they have Alex’s best interest in mind and think such stark and challenging directives are the only way to get our attention.
 
We get that.
 
But, for God’s sake, to attack a young man’s spirit!? To tell a young man doing the best he can his lifestyle choice was wrong!? THAT I don’t get.
 
Living with Duchenne is no picnic. In fact, it sucks, plain and simple. Life and vitality is slowly, steadily, and painfully squeezed from young men while the world moves on around them – while they watch their friends and neighbors live a life they can only dream. How dare anyone – ANYONE - tell someone with Duchenne how to live  (note: if anything, it should be the other way around).
 
Now, I know some of you may agree with the doctors. Some of you may tell us that Alex’s supine lifestyle IS no way to live and needs to change. Some of you may believe Alex needs pushed else his decline hastens. We don’t see it that way, because life with Duchenne is not that simple. Every situation is different. No life is the same. It’s a constant balance between pain and tolerance. Between social, mental, and physical. Between quality and quantity. From our experience, a positive spirit is essential to life with Duchenne on all fronts. I cannot imagine living with Duchenne without it.
 
“Does this mean you think…,” Alex hesitated, “…I’m going to die?”
 
Dr. Sawnani allowed the question to linger before pursing his lips. He sighed and then spoke of his experience with Duchenne. “Alex, your current lifestyle will significantly shorten your life, yes.” Dr. Wilmot sat alongside and nodded slowly.
 
Alex’s eyes flared and he grew visibly worried for his future. “But, I enjoy my room! I enjoy playing games and watching movies! I cannot do anything else anyway! I can’t go anywhere!” His eyes darted between the doctors and then to me.
 
I jumped into the conversation on Alex’s behalf. “We hear you. Really, we do. But, Alex is happy! He really is. He’s full of joy! Doesn’t that matter while living with Duchenne? Isn’t that important?” Dr. Sawnani sat unimpressed and focused on Alex, seemingly ignoring my attempt to defend Alex’s lifestyle…our lifestyle.
 
“Alex, this is how I see your life progressing and I’m very serious about this.” He waited until Alex’s eyes were locked with his. “If you stay in bed, your lungs will continue to weaken, your diaphragm will weaken, you will have difficulty swallowing, and you will have difficulty breathing.” After a pause to consider his words, he proceeded. His words were direct and deliberate.
 
“It will be choking that takes you. Not an acute choking, but one that develops over time. You will not be able to clear your throat the way it should be cleared. You will aspirate. Your lungs will become infected. You will require intubation.” He paused and then added. “It will not be pleasant.”
 
We were speechless. Alex glanced to me, his eyes now glossy. His chest heaved repeatedly with each shortening breath. His feet bounced with nervousness as you tell he just wanted to escape. I swallowed hard beneath my mask and then broke the silence with another defense.
 
“You want Alex out of bed so he can sit up in his wheelchair, right?” Dr. Sawnani did not acknowledge my question and continued to bore his eyes into Alex. I opened my hands in demonstration towards my son. “I think you need to understand THIS is his same position in bed! Because of back pain, he cannot sit to ninety degrees as you hope. So, he will always be at risk as you describe…whether in bed or in his wheelchair!”
 
Dr. Sawnani sat unimpressed and then turned the screw tighter. “Let me ask you, Alex. Do you want to be intubated? Do you want a tube jammed down your throat to save your life?” The graphic description was shocking to hear, let alone visualize. “Because that’s the path you’re on. That is your future if you do not get out of bed.” He then asked a stark alternative. “Or, do you just want to die?”
 
I couldn’t believe my ears and immediately looked to Alex to see his reaction. Thankfully, he held strong and bravely replied. “No, I want to live!”
 
With perhaps his first showing of compassion, Dr. Sawnani nodded once emphatically. “Good. I am glad to hear that. I’m telling you this, Alex, because I want you to understand the harshness of intubation. I want you to realize what will happen if you do not get out of bed.”
 
Alex responded, “I do understand. But, I’m happy in bed! I’m not comfortable in my wheelchair! Don’t you understand that?”
 
Dr. Sawnani leaned back and crossed his arms. He seemed to grow tired of our perceived obstinance. With a casual flip of his wrist he said, “Then, so be it. Just understand what will happen. You will choke. You will be intubated. It may not happen this year, or next. But, it will happen if you stay in bed.” He uncrossed his arms and leaned forward with quiet seriousness. “Alex, your life will be shortened if you do not get out of bed. It’s as simple as that.”
 
Alex turned to me and pleaded, “Dad, I thought I was doing good.”
 
I reassured Alex he was doing fine and that we’re doing the best we could. Silently, I wondered the contrary. Is THIS where we are with Duchenne? Already? Is choking the inevitable next act? ARE we leading Alex down a dangerous path? ARE we doing it all wrong? It’s so hard to know.
 
This is an example of the tenuous balance of life with Duchenne. If it’s not one thing it’s another. If you stick your finger in the dike one place, a leak develops elsewhere. In our case, If Alex doesn’t sit up straight, doctors tell us his internal organs will be affected. If he sits straight as his doctors want, Alex will be in pain and discomfort. If we manage his pain by increasing the dosage of pain medications, then Alex cannot have a bowel movement for nearly a week (and when he does, it is a painful rock). When we use laxatives to manage the stools, we have a mess on our hands with a 200-lb body that cannot be moved easily. Now, add Dr. Sawnani’s imperative to get out of bed, else...
 
UGHHHHHHH!
 
Sensing tension in the room, Dr. Wilmot added his two-cents. “This is why we were insistent for you to come into clinic. This is why we withheld your meds. We needed to see you, Alex. We want you to understand how important it is for you to get out of bed! We want you to understand the seriousness of your situation.”
 
“I do, I do! I know how serious it is. Don’t you understand that?” Alex replied with conviction and some tears. “But, my back hurts all the time! I can’t go anywhere because of the pandemic. My friends don’t visit anymore. Nobody calls me. All I have is my bedroom and my family. It hurts to even go into another room. So, why? Why should I leave my bed? I’m really happy there. I enjoy my life! Why must that change?”
 
I was so damn proud of Alex at that point. Here he was, in the face of not only physical adversity but social and clinical adversity, telling his doctors how HE wants to live, how HE makes the most of his challenging situation. From our perspective, they just don’t get it. Or, perhaps, we don’t get it. It’s so hard to know.
 
The discussion had reached a standstill, with neither side yielding much. The doctors soon stood, weakly fist-bumped Alex with less enthusiasm than they usually have, and departed. Just like that. Our room was eerily quiet.
 
As I feared, the next stage was damage control. Alex turned to me with panic and emerging tears.
 
“Dad, what am I doing wrong? They make me feel like the way I live is all wrong. They make me feel like my life is not worth living.” That last statement grabbed my attention. I needed to nip that in the bud immediately.
 
“No, no, Bud. They’re not saying that. They’re simply stressing the importance that you need to keep moving.”
 
“Don’t they think I know that?”
 
I nodded agreement they must. “I hear you, I do. They’re just saying let’s try to get out of bed every once in a while. They just don’t want you to miss out doing things you enjoy like going to bookstores, restaurants, movies….”
 
Alex’s eyes widened with betrayal. “So, you agree with them? I thought you understood! Dad, my back will hurt! I’ll be uncomfortable!”
 
“I know. I know. I understand. Let’s just do what we can. They’re just trying to help.”
 
Silently, I cursed Duchenne. Again.
 
Several hours later after consultations with other medical disciplines, our day ended and we were amongst the last to leave the Duchenne clinic. The clinic was like a ghost town. No Sawnani. No Wilmot. No nurse Courtney or Kenny-Benny. Just a few doctors and fellows furiously typing the day’s notes in their glass-enclosed central station. The elevator ride down from Building C4 was quiet, just the two of us. The hospital hallways were spattered with people wearing white coats and tired looks. The prior population of parked cars in the multi-level garage had waned. The familiar industrial fan we seem to always park by still roared in mockery of our imminent departure. We were exhausted, like it seemed every time we visited the hospital these days.
 
Alex had been beaten down, emotionally and physically. I lifted him higher in his wheelchair as best possible, careful not to hurt his back or stretch his side. He winced but swallowed his all-to-familiar warnings that he usually shares with any movement. He then slowly rolled into the minivan and waited while I secured his wheelchair with the four tie-down locks. I wrapped his right hand around his cell phone and positioned his arm on his lap so he could listen to his favorite songs on the drive home. I then started our minivan and weaved through two levels of parking to daylight…finally. It was a beautiful evening, thank goodness. Alex then quietly shared his thoughts.
 
“Dad, it’s like my life means nothing. I have no control over my body. I can’t do the things I want. They want me to live as they think I should. My back hurts…” He paused and then added quietly. “What’s the point?”
 
I spoke to him via the rearview mirror. “Alex, you are doing nothing wrong. Absolutely nothing! I’m so proud of you for telling the doctors how you feel. I’m so proud of you for being the loving and positive person that you are. I know living with Duchenne is hard, harder than anything! But, your outlook to life is absolutely beautiful, Bud. Don’t let anyone, ANYONE, not even the doctors, take that joy away from you! You are perfect just the way you are!”
 
Alex did not respond, he just stared out the car window to the world zipping by him. Soon, he looked to his lap and tapped his loosely held cell phone. His music started to play. I glanced to him again via the rearview mirror and smiled when we made eye contact. Just like old times…
 
On the next bump in the road, Alex’s cell phone fell from his loose grip…again. It landed on the floor, face-up, and adjacent to his wheelchair though beyond my backward reach. I groaned in frustration that he could no longer control the playlist, but soon smiled because his music – the music he selected - continued to play from the floor….loud and clear.
 
And when you really think about it…that’s all that matters.

CAUGHT IN A LANDSLIDE

“Hey, Bud,” I whispered while gently nudging his shoulder.
 
Alex arched his eyebrows though his eyes remained closed. His mouth subconsciously opened and slow-chewed imaginary food and his tongue announced its dryness. Clinging to sleep, Alex lay caught between a foggy world of comfort and reality. You could almost see the unwelcome tug-of-war between awakening and sleeping, the latter gradually winning this battle. I smiled and watched this beautiful soul stir and then return to dreamland. His eyebrows relaxed and his chewing ceased. I then waited a moment longer before adding a cold dish of parental sarcasm certain to jump-start his day. My tone reflected the playful smile spread across my face.
 
“Time to wake up, Dude! Today’s the big daaaay!” I let the words sink in and then, seconds later, watched his eyes fly open in panic.
 
If Alex had his way he’d sleep well past noon, wake at his leisure, and then live a life he enjoys in his small bedroom. He would check for messages on his cell phone, watch his favorite shows on television, and play his favorite video games on his PlayStation 4. He would call or text family or friends and check to see how they are doing. He would direct message and Snapchat with complete strangers, hopeful they would become his friend. Through it all, he would smile, laugh out loud, and seize every moment to stay connected while he lay in bed with lower back pain. He would continue such behavior well into the night/morning and then do it all again the next day and every day.
 
Amazingly, he never complains.
 
Say what you will about his lifestyle, but Alex has built a comfortable world around himself under difficult and trying circumstances. He’s built such a world while living with Duchenne Muscular Dystrophy, a horribly cruel disease that progressively robs him of mobility and independence. It’s a world within which he has learned to thrive despite his chronic pain and complete dependence on others for everything. Seriously, everything. It’s a life he’s built despite the loneliness of seeing and hearing a world move on without him. It’s a life he’s built despite having to ask to simply be moved or adjusted or scratched. It’s also a life he has accepted, thankfully. Despite the frustrations of living with this disease, in an isolating pandemic no less, Alex has built a beautiful world within and around himself that he enjoys. In this world, you’ll find happiness, laughter, and love…for anyone.
 
We should all take note.
 
While I stood bedside, Alex’s eyes shuttered hard, his jaw tightened, and his brow furrowed, all in hopes my words were just a dream or that I would just go away. Predictably, Alex peaked one eye open only to find me still standing alongside and smiling as only a teasing Dad can. Between the rhythmic pulses of his nasal Bi-PAP machine, he muttered. “Noooooooo…Do we have to?...I don’t want to go!” The curious eye then closed again, tightly, and his head shook rapidly to escape his reality. He then frowned and offered an alternative. “Can’t we just do a Zoom call?”
 
So began our day, a few weeks back, of doctor consultations in the Duchenne Muscular Dystrophy Clinic at Cincinnati Children’s Hospital Medical Center. We have known these doctors for years (decades actually) and many have become like family. Each visit, they welcome Alex with smiles and hugs. They encourage and support him as he lives with the beast. They poke, prod, and scan Alex to assess Duchenne’s unforgiving and certain advance, and offer guidance for extended health and tolerance. Some visits, the news is good. Others, not so much. 
 
Today, at age 22, things are becoming real for Alex in his battle with Duchenne. His mobility is generally limited to only his right hand and barely his left arm. He lives with constant lower back discomfort. He cannot sit upright beyond a 45-degree angle. He spends his days and nights in bed. He eats in bed. He “showers” in bed. He toilets in bed. He uses a Bi-PAP ventilator when sleeping and sip ventilation when awake. When he does venture into his wheelchair, his hand slips uncontrollably from the joystick, often leaving him stranded until help arrives. 
 
Through it all, he smiles.
 
Neither of us is ready for the hard conversations, the hard truths of Duchenne. None of us want to face the reality of life with Duchenne in all its splendid glory. As far as we’re concerned, this disease can suck it. I’m serious! Duchenne is cruel, heartless, and relentless. It’s unforgiving and could care less what you think of it. Through the years, we have learned the only way to cope with the beast is to live it one day at a time (often one moment at a time) and simply do the best we can. We don’t want to glimpse too far into the future if we can help it. We know what’s coming and don’t need reminders. Likewise, we don’t want to stare too long into the past, seeing mobility and independence long since vanished. Most importantly, we don’t want to lose Alex’s joy for life…ever. THAT mentality sustains him! THAT blessing shines powerful and therapeutic for him in its own right. It keeps a smile on Alex’s face and laughter in his belly. It makes each day bearable as they grow harder and darker with time. As we see it, nothing is more valuable in our battle with Duchenne. Nothing!
 
After a sausage breakfast sandwich, vitamin water, and an assortment of pain medications, we readied Alex for the big day. We toileted, dressed, and groomed him for his second time out of bed in nearly eight months. We lightly applied cologne to impress his nurses and then gently hoisted Alex from his bed. The lift was successful as Alex reported no significant pain. He nodded his readiness to roll across the floor and then lower into his wheelchair that waited in the next room.
 
With renewed confidence for the day, Alex rolled outside and into our accessible minivan. He chatted continuously, as he is prone to do, while I secured his wheelchair with tie-downs. He thanked me for positioning his cell phone in his right hand so he could listen to his favorite songs on Spotify. I buckled my seatbelt and looked at him via the rearview mirror. I then smiled and told him how proud I was he was out and about. It had been a while. Just like old times – Alex and Dad on the road again. Times like that make you forget about Duchenne. Times like that allow you to feel freedom from the Duchenne.
 
We should have known better.
 
With Duchenne, the odds are perpetually against you. You learn that if things seem too good to be true, they probably are. As a result, you learn to focus on the small sphere around you just to get through the day, the moment. Back pain-free? Just wait. Pooping regularly? Just wait. Friends calling? Just wait. Online friend seems nice? Just wait. Generally healthy? Just wait. With realities like these, it’s a wonder and simply amazing that Alex stays so positive.
 
I often think about others living with Duchenne, those both younger and older. I’ll read about when mobility failed them at a young age, how they fell or stopped walking altogether, and reminisce the sorrow and resolve that follows. I’ll read of lives changed with the first power wheelchair, Hoyer lift, and shower chair, and smile with shared remembrance of maintaining at least some semblance of normality. I’ll read of awkward bed transfers, toilet transfers, and annoying and unfair public inaccessibility, and snort with frustrations that things should not be so difficult. I’ll read of shrinking social circles, the loss of friends, and the hard life questions and then nod with an understanding of the hidden pains doctors somehow fail to fully grasp. In my mind, I’ll whisper support to those families that I know it’s not easy, take it one day at a time, or know you’re not alone.  I’ll also sigh and think to myself, you ain’t seen nothing yet.
 
Then, I’ll consider those more experienced with Duchenne, those living with the beast well into their adult life and currently much farther down the road than us. I’ll think of them making the most of their life despite their increasingly hard circumstances, some I cannot even fathom. I’ll silently toast them for their determination and strength while living with Duchenne. I’ll idolize their parents for their strength to keep pushing and support their sons. I’ll also send prayers when the going gets tough and their hospital stays extend beyond weeks. I’ll then think of them saying to me what are YOU complaining about? YOU haven’t seen anything yet. You think it’s tough now? Just wait until your third or fourth hospital stay with pneumonia. Just wait until they intubate, trach, or install a g-tube into your son. Just wait until his heart or lungs struggle to function. Just wait until….
 
Sigh. Our future.
 
We parked in P3 and rode an elevator to the Duchenne Clinic in Building C4. We looked forward to seeing our long-time Cardiology check-in friend, Kenny-Benny. We knew his welcoming face would kick off the day for Alex and help him forget about his back pain and the long day of consultations. But, as if a sign of things to come, Kenny-Benny’s glass office was vacant. His rolling chair sat empty. Alex grimaced in disappointment as if he knew the day wouldn’t be the same.
 
In our windowless Duchenne Clinic room, we waited as we have done twice per year for much of the past TWENTY years. We chatted about the people we’d see and what they would say. I performed my familiar examination routine as if I was each of Alex’s doctors rolled into one. We did our best to pass the time.
 
Before long, familiar faces filled our room. Courtney, the ever-smiling and enthusiastic Neurology nurse started our afternoon with it’s-so-good-to-see-you-again’s, high-fives, and hugs. She inhaled deeply alongside Alex, pulled back, and then smiled sideways.
 
“Whoa, don’t you smell good!” she complimented his scented aroma. Alex beamed with pride and shot me a thankful glance.
 
Beth, the always-friendly and loving nurse from Cardiology, followed and explained which doctors would visit and when. Before we were ready, the race had begun as our door revolved in rapid succession with visits from Endocrinology, Respiratory Therapy, Neurology, Palliative Care, Rehabilitation, Physical Therapy, Cardiology, Pulmonary, Nutrition, Social, and Psychology - an all-too-familiar cast to an all-too-familiar and exhausting day. Cincinnati Children’s runs a wonderful and thorough clinic where they battle Duchenne with as many resources as possible because this relentless disease affects everything.
 
Looking back, the first signs of our changing reality surfaced when Palliative Care entered the room. Friendly as ever, the Palliative doctor seemed clinical with Alex’s pain management and abrupt with her continued plan for treatment. “Okay,” she said. “It seems like you are managing your pain well. Let’s stay on the same path with our current prescriptions and we’ll see you in six months.”
 
This was all well-and-good and well-received, but….wasn’t there an elephant in the room? Didn’t Palliative Care decide to end Alex’s in-home care this past winter (see WITH ALL THE HEADWINDS - david click (davidlclick.com))? Didn’t that topic need at least some attention or discussion?
 
“Palliative manages Starshine, right?” I pressed the obvious. (Note: Starshine is a home-based service that helps patients who are facing debilitating, life-limiting and terminal illnesses - and their families. Alex had been in this wonderful program from November 2019 - January 2021).
 
She nodded, though a bit confused as to why I asked.
 
“Can we talk about why Palliative decided to terminate Starshine’s visits with Alex?”
 
“Umm, okay,” she replied with confusion. You could tell Starshine was not on her agenda, though should have been.
 
I looked to Alex to make sure he was okay with the topic. He nodded.
 
“First off, I would like to say Starshine has been absolutely wonderful for Alex. They visited every week for over a year. They…”
 
I rattled off all Starshine had provided including nursing care, music therapy, child life therapy, holistic therapy, social work, spiritual guidance, and physical therapy. I specifically named incredible individuals who we will never forget. They came each week with smiling faces, laughter, and friendship. They treated Alex with kindness and humanity. They talked about anything and everything with a social young man who lay immobile in bed. They administered weekly testosterone injections. They became the highlight of Alex’s week within an isolating pandemic. And then, last January, the relationship abruptly ended.
 
“So, we’d just like to understand. Why did Palliative Care terminate Starshine for Alex?”
 
The doctor hesitated, and then reiterated reasons that had been addressed over the phone last January. She said Alex is doing well and they have patients with more pressing needs than his. She smiled at Alex and patted his knee as if to indicate how wonderful he is doing. Alex didn’t return the smile as he sat uncomfortably in his power wheelchair. He loved Starshine! He wanted them to resume their in-home visits. He tilted his seat back to relieve pressure and waited for her response. She then explained again that because Alex chose to stay in bed and not get in his wheelchair, Starshine’s services were no longer needed.
 
To this day, that reasoning confounds us.
 
“If I may offer a perspective from the front lines of life with Duchenne. Starshine visits were more than just physical therapy. They were invaluable to Alex and our family. They brought him joy, laughter, and social connection when he needed it most. They helped to sustain a young man who craves social connection. They provided a valuable outlet for his outgoing personality. They helped to maintain the smile on his face!”
 
The doctor nodded her appreciation.
 
“You must understand life with Duchenne,” I continued. “It’s painful, not only physically but emotionally. It’s socially isolating, especially for a young man whose friends have moved on into college, jobs, or wherever. It’s frustrating because he cannot do anything for himself other than share the joy in his heart. This past year, Alex’s social connection to the world has been severed. Starshine helped to fill that void. That, in itself, is priceless! Can we not restart Starshine to help Alex feel connected, to help him feel a part of the world? As I’m sure you are aware, feeling connected goes a very long way towards overall health.”
 
The doctor seemed perplexed as to why we would ask such questions and make such statements. “I’ll pass along your concerns to the team, but I don’t think the program will be restarted for Alex at this time. There is really nothing more I can do.”
 
“Why not?” I challenged.
 
“Well, like I said, because Alex prefers to stay in bed. That is his choice and we respect that. As a result, our role to support physical therapies so he can get back into his wheelchair are no longer needed. For now, Palliative’s role moving forward will be pain management as we just discussed.”
 
They don’t get it. It seems as if Alex has been abandoned and services to help him live with Duchenne are only contingent on him getting back into his wheelchair. It’s as if his overall health and humanity are defined solely by mobility.
 
“If you don’t mind me saying, just because Alex prefers to stay in bed does not mean the services Starshine provides were not needed! He has nobody besides family! Talking with the nurses and the various therapists were the highlights of his week! He NEEDS that social connection! It goes a very long way!”
 
“I hear you. But, the team has made its decision. We are not in the business to provide social connections to patients. We provide supportive services to get the patient back into the world. Because Alex chooses not to get into his wheelchair, our services are no longer needed.” You could see her becoming frustrated with us.
 
We sat dumbfounded and equally frustrated.
 
Next, Dr. Wilmot from Cardiology walked into the room, this time accompanied by Dr. Sawnani from Pulmonary. Dr. Wilmot kicked off the discussion saying that Alex’s heart was doing well, all things considered. We mentioned a few episodes of palpitations that had startled us, but Dr. Wilmot was not overly concerned. Overall, Alex’s heart is strong, he said. He listened to Alex’s heartbeat and backed away pleased. “We need you to continue your current prescriptions and report back to us when you feel your heart palpitating again. Practice deep breathing to help calm any future episodes.”
 
We thanked him.
 
The tide then turned with Dr. Sawnani, Alex’s lead Pulmonologist, who had been sitting quietly in the room listening to Dr. Wilmot’s assessment and watching Alex breathe and speak. Before even listening to Alex’s lungs, as he typically starts his physical exam, Dr. Sawnani turned squarely to Alex.
 
“Alex,” he sighed without emotion. “How are you feeling?”
 
Alex looked confused with the question and replied. “Good, I guess.” He didn’t understand why one of his favorite all-time doctors was suddenly so serious. Where was the laughter? Where was the smile? Don’t you want to tease me about my search for a girlfriend?
 
“That is good to hear.” Dr. Sawnani sighed again and then clenched his lips and furrowed his brow, further confusing Alex. He then cut to the chase. “Let me be blunt. You cannot go on living as you do.”
 
The comment stunned Alex. His smile immediately vanished. His feet bounced with nervousness. His eyes glanced to me for support. His trademark positive demeanor all but disappeared as the doctor he most respects disapproved of the comfortable lifestyle he had built. You could almost see the blood drain from Alex’s face as he dared to ask.
 
“What do you mean?”
 
To be continued...

WITH ALL THE HEADWINDS

No pomp, no circumstance, barely a fist bump goodbye. No diploma, no handshake, only The Goldberg’s on television, a faraway look, and then a despondent sigh.
 
“You’ve graduated!” She said. 
 
Woohoo.
 
That was the scene in Alex’s bedroom two weeks ago, following the departure of two Palliative Care nurses from our home. For the past 15 months, StarShine, the Hospice of Cincinnati Children’s Hospital Medical Center, had provided nursing and other therapies (Physical, Holistic, Music, Social, Spiritual, and Child Life) to help Alex overcome debilitating back pain and get back into the real world, so they say. Nurses visited every Wednesday at 3PM to evaluate his overall health and pain, assess skin issues commonly associated with bedridden patients, and administer testosterone injections to bolster bone strength. They usually stayed for an hour or so, sometimes more. Their visit became a highlight of our week.
 
And for good reason!
 
StarShine helped Alex strengthen physically and emotionally. They encouraged mobility and social engagement. They boosted his trademark positive spirit during the frustrating and isolating pandemic. Together, StarShine staff and Alex made holiday crafts, played guitar and sang songs, and watched any show or movie Alex had queued up for their visit. They whispered mental journeys and exercises to help him relax and realize his capabilities. They pushed him sometimes to the point of tears to get in his wheelchair. Most importantly, they connected with Alex on a personal level. They filled his heart, and ours. They made him feel whole. They made him feel connected and human. What more could a parent ask?
 
Then, in one phone call, it ended. Just like that.
 
“Hi, Mr. Click,” the voice announced with clinical precision. “It’s Dr. Rachel from StarShine.”
 
This isn’t good, I immediately thought. Dr. Rachel, Alex’s lead Palliative Care doctor, rarely calls us and, when she does, something serious is usually afoot. For example, last Spring Dr. Rachel called to discuss an upcoming Zoom call with all of Alex’s doctors. That experience was quite memorable (www.davidlclick.com/blog/tug-of-war) to say the least. Later, during our last conversation in clinic visit in August, Dr. Rachel openly questioned whether Alex still needed StarShine. She knew Alex preferred to stay home in bed and that his effort to get out of bed was taxing, if not avoided. But, after listening to Alex describe his lower lumbar pain, she agreed to continuing home-based services. She said we would revisit his need at our next clinic visit this coming April.
 
That plan obviously had changed.
 
During the most recent call, Dr. Rachel spun it the best she could. Alex had graduated, she said. He should be proud of his accomplishments that he no longer needs home visits. What? She said she could assess his health and pain tolerance during clinic visits once every six months. This didn’t make sense.
 
“Besides,” she explained. “With Alex’s choice not to get back in his wheelchair, the team…
 
“Choice? The team?”
 
“Yes, Alex has made it clear he does not want to leave his bed. While we respect his decision, this renders physical therapies to get him back into his wheelchair impractical and, thus, no longer needed. When I refer to team, I mean the Palliative team, including Physical Therapy and Neurology.”
 
Ahh, I see it now. Physical Therapy and Neurology have pressured Alex for months to get back into his wheelchair. Period. They wanted him out of bed and out-and-about. It became their primary goal. Else, they say, Duchenne wins. They want him back into society so he can enjoy life.
 
Hello! Who doesn’t want that! All of that!
 
It’s an exhausting debate.
 
Do they honestly think Alex enjoys his chronic back pain? Do they really believe he enjoys immobility? Do they grasp the emotional pain one endures when they see the world moving around them? Do they understand the feeling of hearing kids squeal with excitement somewhere outside your window while you are unable to simply move in bed? Do they know what it is like to require assistance for everything? Seriously, EVERYTHING! Do they honestly believe Alex chooses this lifestyle? To be away from the world and apart from human connection? This is Alex we’re talking about! One of the most social human beings who has never met a stranger! If you’ve met Alex, you KNOW what I mean.
 
Doctors tell Alex to keep moving, else Duchenne’s grip strengthens. We get that. More accurately, we live it every day. But, Alex’s lower back pain is persistent and forces a weekly balancing act for normality. Load him up with pain meds to mask the pain and he cannot poop for a week. Take away the meds so he can be regular and hello pain. Struggle hard to get his large frame delicately into his reclined wheelchair and then go nowhere because of the pandemic and his weakened immune system. Sure, he can roll to another room in the house or venture onto the patio, driveway, or perhaps even a park. Heck, we could go for a drive! But after a few incredible journeys, the hour-long hoisting and adjustments for the half-hour of uncomfortable wheelchair-sitting and pain tolerance soon borderlines on absurdity. He knows this. He feels this. He lives this! Before long, the thought of moving petrifies Alex to a point where he chooses his bed. Is that so wrong? His bed is his comfort space where his body and spirit thrive. 
 
The nurses witnessed this every Wednesday, too! They saw his happiness with human connection. They saw his smile and heard his laughter.
 
I explained to Dr. Rachel that Alex’s need for StarShine went beyond physical health and mobility. I explained the weekly nurse visits were really the only outlet he had other than Mom and Dad (and occasionally Kaitlyn and John) sitting with him in his room every day and night. I explained he needed these visits for social connection during an isolating pandemic. I emphasized how the StarShine home visits provided more support to Alex than she may ever really understand.
 
Hearing no response nor bend in her assessment, I sighed and asked when the services would end. “A month? After our next clinic in April?” I wondered.
 
Dr. Rachel explained Alex’s StarShine home visits were ending…the next week.
 
“Oh!” I replied with mild shock followed by a long pause. “That’s rather sudden, don’t you think?”
 
“Yes, I do apologize for the short notice. But, we need to divert our resources elsewhere.” Before I could reply to the oddly administrative response, she continued. “Besides, Alex has progressed to a stage where we feel he doesn’t need StarShine home visits anymore.”
 
“Really?” I reacted with surprise. It was all I could think to say in the amazement. What I wanted to say was that StarShine home visits provide an incredible resource BEYOND just the physical therapies to get Alex back in the world. While Duchenne is horribly and cruelly destructive from a physical standpoint, it is incredibly destructive, if not more so, from a social perspective. Duchenne is isolating. It severs past relationships. It prohibits chances to form new ones. It erodes resolve to keep trying. Simply, it leaves a young man alone and in the dust as he watches his friends and the world move on without him. So much I wanted to tell her. So, I did.
 
“The weekly nurse visits are the highlight of Alex’s week!” I said. “His friends don’t visit anymore. They’ve all moved on with their lives. They rarely call. They barely return his attempts to text message or Snapchat or whatever kids do these days. Alex has often told me it’s like he doesn’t even exist anymore. Heck, I can count on one finger how many friends regularly check in on him…and that friend is a former teacher!”
 
“I hear you,” she tried. “That must be hard.”
 
She had no idea.
 
“Hard doesn’t begin to describe it,” I continued in Alex’s defense. I explained how he lowers his incline bed so he can walk his left arm high enough to balance his cell phone on his chin. I then described how Alex works diligently to text one letter at a time using only his left thumb (and sometimes his tongue) to message friends. I expressed the heartbreak of seeing his disappointment that his friends rarely respond. When they do, the messages are often curt as if to say stop bothering me. When they don’t…
 
This is our current stage of Duchenne.
 
It’s more than physical. It’s more than physical. It’s more than physical. I can’t emphasize this enough.
 
“You know Alex!” I challenged Dr. Rachel. “He’s perhaps the most social being I have ever known. He craves human connection. ANY connection. A conversation, a fist-bump, or even a nod hello. He longs to talk with anyone at any time. He sees the good in everyone. He listens. He loves unconditionally. Now, imagine him bedridden during a pandemic! Alone. Think of that! Really, just think of that!”
 
“I know,” she offered weakly.
 
I explained that although Alex has physically plateaued at best and chooses not to get in his wheelchair, he still needs StarShine. I explained that although he shows little desire to challenge his back pain for a temporary wheelchair spin, that doesn’t mean he has given up.
 
Dr. Rachel sighed. I was not sure if it was for my pushback or Alex’s situation.
 
Please don’t misunderstand me. Dr. Rachel is awesome! Of any of Alex’s doctors, I think she understands pain’s cruelty more than others. She deals with pain treatment every day and delicately manages very difficult and tender situations with children, some terminal. She understood my frustration and I’m sure she had seen it before. I realized her general silence and tacit agreements were just her way of allowing me to vent.
 
But still…
 
“We’ll still see him every six months,” she cheerfully tried to end the conversation. “We’ll be able to see how he’s doing at each visit, and if he needs home visits in the future, we’ll restart them!”
 
Gee, thanks. Until then, we’re left to battle the beast on our own. Again. Sigh.
 
As I mentioned, life with Duchenne is not just a physical challenge. It is not simply movement or lack thereof. It’s an emotional challenge. A social challenge. It’s humanity in one of its rawest forms. Why is that so hard for some to understand?
 
When Alex was 8 years old and he lost his ability to walk and simply stand, doctors, therapists, and even insurance companies worked quickly and diligently to help him stay mobile, as if mobility defines a person. They fit and procured mobility equipment including wheelchairs, shower chairs, Hoyer lifts, and more so Alex could move about with confidence and stay a part of society. Take away mobility, the primary reason medical professionals championed for a young boy with Duchenne, and then what? When it comes to human needs beyond mobility – means and strengths for simple inclusion - it seems our society misses a beat.
 
That needs to change.
 
On our last Wednesday StarShine visit a couple weeks ago, we savored the time together with his nurses as if we didn’t want it to end. We reminisced about the rotation of all the wonderful nurses – Julia, Michelle S, Michelle R, Missy, Sarah, Kris, and Lucy. On that last Wednesday, we laughed with a young nurse, Kayla, who recently joined StarShine and used the visit with Alex for training purposes. We chuckled how Alex routinely showered each and every nurse with compliments of their hair, wardrobe, or smile, Kayla included. We laughed when nurses awkwardly climbed alongside Alex to administer a testosterone injection in his opposite arm only to hear Alex boldly brag he had a nurse in bed with him! 
 
On our last StarShine visit, we smiled in memory of Alex talking and doing crafts with Tami, singing songs with Alexa, and socializing with Amy. We warmly enjoyed memories of Peggy providing holistic therapies and mental visualizations that calm Alex (and me) to this day. We see Peggy’s signs still hanging in his bedroom saying I Am Enough, I Am Loved, and I Can Accomplish Anything! We reminisced about visits with Judy, the StarShine Chaplin, who provided a calming discussion about life and beyond.
 
Afterward, I quietly led Julia and Kayla from Alex’s first-floor bedroom, through our family room, and to the front door. We stood awkwardly in the foyer, not knowing the proper way to end 15 months of home visits so suddenly. I expressed my sincere thanks and appreciation for their caring and compassion with Alex. I said we would miss them and, if possible, it would be nice if they checked in with Alex every now and then, even if only by a phone call or text. They nodded weakly and mumbled words we both knew meant it wouldn’t happen. They thanked me for our family’s hospitality and acknowledged they would miss us, too. After another awkward moment, I reached for and opened the door and they walked out. Just like that. No hug, no handshake, no pandemic elbow bump. Just a nod of thanks and well wishes for good luck. I then shut the door and locked the deadbolt.
 
Clunk.
 
After a pause and a sigh, I walked back towards Alex’s first-floor bedroom. I worried he wouldn’t take the ending of StarShine home visits well. I feared sadness or perhaps cresting tears as we have seen before. I worried about regression, not just physically but emotionally, with the thought of losing more friends. But, when I entered his bedroom, what I saw sustains me to this day. As much as the beast Duchenne steals, destroys, or crushes any dream a parent may have for their son, it also provides unique moments that make you smile, laugh, or simply forget about your worry or how you feel.
 
There, I found Alex resting quietly on his inclined bed. His Star Wars-themed sheets bunched disheveled at his waist. The wall-mounted television above and beyond the tips of his toes softly broadcasted The Goldberg’s, as it had before. The late afternoon winter sun waned gently through his bedroom window. Young shrills of neighborhood activity echoed somewhere in the distance.
 
As I stood at his bedroom doorway, Alex did not focus on my entry, the television, or the muffled sounds outside. His gaze fixed sideways to somewhere beyond the window, his mind lost in thought. He showed no expression other than perhaps simple exhaustion with everything…with Duchenne…with life. I moved alongside his bed and reached for his hand, waiting for him to share his thoughts.
 
He did.
 
“Just my luck,” he proclaimed after a defeated sigh. “On my last day with StarShine…a hot young nurse finally showed up!” He slowly shook his head and then chuckled. “I’m cursed.”
 
I laughed aloud and smiled proudly. That’s my boy!
 
With all the headwinds…
 
This kid is incredible. Absolutely incredible.

A COUPLE OF THURSDAYS AGO

Life is not all peaches and cream. It's not always smiling faces you see on social media. It's not always laughter, inspiration, and good cheer. It's not always sunshine, margaritas, and backyard barbeques. No, some days life can just suck, no matter your best intentions or how hard you try. Some days, life can stick you in a corner, test your patience, and then expose your weakness. It can push you beyond your limit and then extract words you typically would swallow. When it does, life can leave you ashamed and embarrassed. It can leave you apologetic and remind you of your impact on others. More importantly, it can realign you with perspective you thought you had mastered. Such was our day a couple of Thursdays ago, more accurately such was my day, and I am not proud.
 
The day started well enough. Alex woke with a smile of anticipation for a rare and long overdue visit to the Duchenne Muscular Dystrophy clinic at Cincinnati Children's Hospital Medical Center. It would be his third venture out of bed in over a year and first clinic visit in nearly eighteen months. All reasons to celebrate.
 
As you can imagine, Alex eagerly looked forward to seeing his hospital friends Courtney and Kenny-Benny, and his doctors Sawnani, Rutter, Wittekind, and Rybalsky, to name a few. He hoped to chat Star Wars and superheroes with his favorite guys named Mark, one an enthusiastic respiratory therapist, and another a compassionate social worker who checks in with Alex now and then. Alex hoped to see Beth in Cardiology, Wendy in Neurology, and Adrienne in Psychology, each who bring a smile to Alex's face and make him feel special. We joked about which doctor would say what, using familiar accents and phrases we have come to know and love over the years.
 
But, before helping Alex out of bed, we needed to address his back pain, else the day would be short if at all. Per direction from his Palliative Care team, we administered pain medications and crossed our fingers they would work, though silently dreading side effects we have come to know too well.
 
About an hour later when the pain meds had kicked into gear, we successfully hoisted Alex and then lowered him into his power wheelchair. We positioned him for comfort, nodded our readiness for the long day, and then rolled outside into the sunshine and fresh air. Once tied-down in the minivan, we congratulated ourselves for the milestone of actually getting in the minivan – let alone getting out of the house – and then cruised the speed limit and chatted about the day to come.
 
Boy, did we chat!
 
You may recall we often refer to Alex as Question Boy and his ability to ask questions is rather unique, but this trip to Children's Hospital surpassed all experience. Beginning with the hoisting and continuing into the hospital, questions rolled off Alex's tongue as if a thought-dam of words had burst. Each syllable rolled into the next and each thought led to another. Each question demanded attention and each question demanded response. If there was punctuation somewhere in his speech, I certainly didn't hear it. If there was a pause, I missed it.
 
"Did you hear me, Dad? Did you hear me? Dad! Did you?"
 
Can you blame him? He'd been stuck in bed and socially isolated for a long, long time! Just go with the flow, I told myself. He needs this day!
 
Upon arrival at the hospital, we parked in underground level P2 and then rode an elevator to Building C as Alex continually shared his excitement.
 
"Are you sure this is the way to go? Do you think Kenny-Benny will be at lunch? Can you adjust my legs? I wonder who we'll see…"
 
I nodded.
 
After technicians scanned our foreheads for fever, we shared another elevator with others who kept proper distance while Alex exchanged hello's, how-you-doing's, and have-a-good-day's for each masked rider. They also nodded. We arrived on the 4th Floor and then found our long-time friend, Kenny-Benny, at the Duchenne clinic check-in desk. From the look on his face, Kenny-Benny did not know what hit him.
 
About fifteen minutes later, a nurse escorted us to our private clinic room where Alex continued talking and I sat in the room's only guest chair, tucked in a corner. Par for the course, I sat boxed in alongside an animal-stickered wall, an unnecessary queen-sized exam-bed, and Alex's power wheelchair. Courtney, Alex's favorite nurse soon entered with smiling eyes and open arms and we were off to the races with visits from doctors, practitioners, nurses, and fellows from Neurology, Cardiology, Pulmonary, Endocrinology, Palliative, Psychology, Physical Therapy, Rehabilitation, Social, and Nutrition. Alex peppered each and every person who entered with questions and comments.
 
I smiled beneath my mask.
 
Don't get me wrong! I applaud Alex taking charge of his health. I think that's awesome and shows his increasing maturity. I also understand that Alex is a social being who needs connection. A lot of connection! He has been stuck in bed for over a year and his friends rarely visit because of COVID-19. I also appreciate the fact we were out of the house and in a new environment for the first time in seemingly forever. Alex needed this! We both needed this!
 
But, those questions…
 
They did not stop!
 
It wasn't just me. Everyone noticed them, and when they did they glanced to me with wide, sideways eyes. If they were perceptive, they would see my eyes reply welcome to my world.
 
Yet, this was Alex's day. He could do as he pleased. I reminded myself to just keep smiling beneath my mask and nod.
 
But, with every spoken word, my patience and self-control weakened. With every doctor that stood, fist-bumped goodbye, and then freely exited the room, the corner where I sat grew smaller, crowded, and more isolated. I say this because, although I was not the only one to experience Alex's questions that day, I was the ONLY one who heard every word.
 
…for nearly EIGHT HOURS!
 
I am not exaggerating.
 
It wasn't long before Alex's pain medications weakened, his back pain had returned, and he became uncomfortable while sitting in his wheelchair. For the remainder of the day, Alex needed frequent repositioning in his wheelchair. We call them lift-backs, as I position my feet astride his chair, wrap my arms around his torso, and then lift him up and back and higher into his wheelchair. This move readjusts and repositions the load on his lumbar spine and helps him to sit comfortably.
 
During one such lift-back, I, unfortunately, strained Alex's back and he let me know it. He screamed aloud that I pulled a muscle and heavy tears immediately followed. I did my best to comfort him, but the damage had been done. Alex's physical and emotional state took a turn.
 
As Nutrition walked into the clinic room, Alex said he needed to use the restroom and I leaped at the opportunity despite the nutritionist's claim her visit would be quick. We pushed by her and I ushered Alex down the hallway to the accessible restroom, hoping our time there would help to calm him and bring him comfort. Once in the restroom, I locked the door, wiped his lessening tears, and then pulled out a plastic bottle we keep in his wheelchair bag.
 
"Hurry!" Alex sniffled through his drying tears. "I gotta go bad!"
 
He was not kidding!
 
But…after FULL bottle where we couldn't pull away, we noticed a leak had sprung from the bottom of the bottle. Chaos ensued and our frantic voices echoed loudly in the tiled bathroom. The leak had already redistributed much of the bottle's contents all over Alex's pants, shoes, wheelchair, sling, and floor. Ugh!
 
By the time we had cleaned up as best possible and returned to the clinic room, the Nutritionist was eager to leave and concluded her visit promptly. We did not object. We had reached our limit as well. Alex was increasingly uncomfortable. I was emotionally exhausted. We needed to get home.
 
Yet, we still hadn't talked to Psychology, Physical Therapy, and a second round from Cardiology to affix a 24-hour Holter monitor to Alex's chest. All-in-all, that could be at least another hour in clinic. Our enthusiasm for the day had long disappeared and we were more than ready to leave.
 
After Cardiology and another unexpected visit from Neurology, we readied to leave. I repositioned Alex one more time and then we departed as quickly as we could. Alex did not extend a fist-bump to anyone along the way. He was uncomfortable. I was uncomfortable. We. Had. To. Get. Home.
 
The day then collapsed completely in the underground parking garage adjacent to the loud, obnoxious, industrial-sized ventilation fan I had nearly forgotten about from when we parked. While I repositioned Alex in his wheelchair yet again, we could not communicate effectively….or, perhaps, at all. Nothing…NOTHING…brought Alex comfort as we tried multiple times to reposition him in his wheelchair.
 
"Wait, wait, wait! Stop, stop, stop! That hurts!" Alex warned with seemingly the slightest of movements. The fan roared alongside.
 
I paused and then tried again and again.
 
"AHHHH!" Alex cried out, each time louder than the last. His back muscle hurt and he claimed I was too rough. I claimed we had no choice as there was no other way to reposition him effectively. I assured him I was doing the best I could. Still, Alex complained his back hurt bad.
 
"Well, sure it does!" I agreed. "You pulled a muscle and you are slumped in your chair. I'm sure you're uncomfortable. But, I can see you need to be lifted. Let me try again." I reached forward, but he rebuffed my attempt.
 
"NOOOOO! It will hurt!"
 
"Alex," I acknowledged. "I know it hurts you, but we need to reposition you to help your discomfort! You can't ride home slumped like this!" (Note: By now, Alex had slumped so far that his lower back was nearly on the seat.)
 
"But, you'll hurt my back muscle again!"
 
"I'll try not to, but we really don't have a choice!
 
"But, Daaaad!"
 
I then offered. "Well, we're at the hospital now. Do you want to go in for an x-ray or go see another doctor?" I knew he hated x-rays and only voiced the option to channel his thinking.
 
"Nooo."
 
"Well, then…," I allowed those two words to linger. After a while, I positioned my feet alongside his wheelchair and wrapped my arms around his body.
 
"NOOOOO!" He cried out, though I knew this was more than physical pain talking. This was also emotional exhaustion speaking. This was the methadone and morphine laughing at us after they had snickered all day just waiting for their opportunity.
 
"We need to wait! It will hurt!" Alex warned over the obnoxious ventilation fan.
 
My patience long gone, I pushed onward. "Alex, please! Let's just do this!" I then raised my voice over the fan. "WE JUST NEED TO GET OUTTA HERE! I CAN'T STAND IT ANY LONGER!"
 
My volume surprised him. "Why did you say it like that?"
 
"Alex, please…."
 
He thankfully let it go but restated his well-known position. "Dad, it will hurt if you lift me!"
 
"I know! I know!" I replied, trying my best to contain my raw feelings. "But, if we want to get home, we need to push through this!" I leaned in again, but Alex rebuffed. I backed away and threw up my hands. My frustration had peaked. My already weakened ability to remain calm that day had vanished.
 
"ALEX, WE JUST NEED TO GET THE F OUTTA HERE!"
 
Alex sat stunned at my choice of words.
 
I then turned away in frustration and, over the roar of the industrial fan and echo of the P2 Parking level, uttered a phrase under my breath that I try to keep Alex from hearing.
 
"God, I hate this Fing disease!"
 
It seemed the weight of the day collapsed upon me in that parking garage. It seemed the claustrophobic room in the Duchenne clinic and the trapped feelings it exposed, came pouring out beyond my control. The constancy. The isolation. The pain. The knowledge of what is yet to come with Duchenne. The inevitable. It seemed as doctors and nurses would soon be driving home after a long day…leaving Duchenne for a while…we were stuck in that loud, obnoxious, echoing garage with the beast mocking our futility to simply move.
 
I turned around and realized I had gone too far.
 
Alex looked up to me with wide eyes and cresting with tears. His expression screamed how could you without saying a word. The scene was heartbreaking.
 
Before I could apologize for the ugliness I spouted - from his Dad of all people - Alex set me straight. With glossy eyes and a now furrowed brow, it was Alex's turn. He screamed over the roar of the industrial fan.
 
"WELL, HOW DO YOU THINK I FEEL, HUH? DO YOU THINK I LIKE IT? I HATE THIS DISEASE MORE THAN ANYTHING! I CAN'T WALK! MY BACK HURTS ALL THE TIME! I'M STUCK IN BED! NOBODY COMES TO VISIT ME ANYMORE! I'M….." Alex turned his head and looked away as tears streamed down his cheeks. You could tell the words he shouted were words he had tried to suppress despite his pain.
 
I hated myself at that moment. I hated myself for darkening this beautiful soul. I hated myself for holding how Duchenne impacted my life over his. I had gone too far. Way too far. I bent down to hug him tight and apologized.
 
"I'm sorry, Bud. I really am. I know how much you hate this disease. I know how much your back hurts. That wasn't fair for me to say." I wanted to add it's just that sometimes… but, there was no excuse for my words. None. Of anyone dealing with this horrible disease (doctors, nurses, caregivers, friends, families, …even Dads), no one…NO ONE…has it harder than the human experiencing it directly.
 
Later, Alex quietly rolled into our accessible minivan where I then tied down his wheelchair for safety. We drove through a winding parking garage in continued silence, both considering the words just spoken. One of us ashamed beyond measure.
 
At the top level of the underground parking garage, we found daylight and relief from the confines of the clinic day. I apologized again and we talked about our last eight hours. We acknowledged the good the day brought us, especially the warmth and love showed Alex by his many friends. I told him how proud I was of him for taking charge of his health. We spoke of the benefit for his doctors to evaluate his health in person, and the stable news they shared. We chuckled about our experience with a defective plastic bottle. More importantly, I apologized again for my emotional outburst.
 
This is what Duchenne can do to you and it ain't pretty. It can overwhelm you. It can swing you from highs to lows without notice. While the disease sucks on so many levels, it can drive you nuts despite your best intentions. It frays tempers and fractures relationships. It stokes anger and extracts ugliness. Despite the glamour of inspiration and strength that you see on Facebook or Instagram…despite the cheerful fundraisers or 5Ks or walk-a-thons…Duchenne can rip you to shreds more often than you care to admit.
 
Days like these are the days nobody wants to hear about with Duchenne. These are the days that nobody enjoys reading (let alone writing) about, although we desperately need to share. Nobody cares to hear about the ugly details. Instead, people want the inspiration, the joy, and the measure of good fortune. In reality, some days are ugly…downright ugly…and that's hard to admit.
 
As we fell asleep after that long day a couple Thursdays ago, Alex and I apologized to one another again. I promised him better days ahead. We said our little routine we have said to each other since he was about three years old. He asked me to push hair from his eyes and scratch an itch on his head. I pulled his bed sheet up to his shoulders. We then held hands for the night, as we always do.
 
Alex drifted asleep first. I lay there staring at the ceiling, embarrassed for the day. It wasn't ideal. It wasn't my best. On a day where we should have celebrated Alex out of bed and in clinic, Duchenne's ugliness overwhelmed us…okay me. While Alex's BiPAP hummed its familiar tune and lulled me towards sleep alongside my son, I swear I heard the beast laughing, yet again, somewhere in the distance.
 
 
​
P.S. To celebrate the big day at the Duchenne clinic, we had planned on taking a group picture of Alex and his doctors, or at least one of him and Courtney or Kenny-Benny. But, with the day's emotional and physical rollercoaster, we forgot. Instead, we snapped a picture on the drive home (see above). Blurry and half-smiling, the picture kind of captures our mood for the day fairly well.

HEY MOM IT'S ME

June 1, 2020


Hey Mom, it’s me! How’s it going? I know it’s been a long time since my last letter. But you know, life kinda gets in the way at times, right? Anyway, I thought I’d write to you after all these years, 27 as a matter of fact. Why? Well, for one, I miss you. Truly! I miss everything about you. I miss writing to you. I miss talking with you. I miss laughing hysterically with you in the kitchen or at the dinner table or in the driveway or, well, anywhere, really. I miss your steadfast love, support, and encouragement of our entire family. I miss your smile and welcoming arms with every visit. I miss your laughter. I miss your kindness…
 
Can you tell it’s been awhile?
 
I miss seeing you in the stands at every game, tee-ball through college. I miss post-game dinners with you and Dad at Evergreens in Granville. I miss seeing you pull weeds in the yard or planting petunias at the Pool. I miss seeing you instruct kids to swim as well as seeing you blow your whistle at them to stop running. I miss your famous macaroni and cheese with hot dogs casserole. I miss your pear slices sprinkled with paprika on lettuce. I miss your liver and beets (not really). I miss our talks in the basement laundry room. I miss playing board games and card games with you, as well as solving word jumbles and crosswords. I miss reading the paper with you and talking about the news. I miss listening to Marty and Joe with you and cheering on the Big Red Machine. I miss playing tennis with you. I could go on…and often do during quiet moments…like now.
 
So, why I’m writing? You may or may not know, but this day has been circled on my mental calendar for years. Decades actually. I’ve dread it. I’ve loathed it. I’ve counted the days until today. Now that it’s here, all I can think about is you and how young you were! It didn’t seem fair then and it certainly doesn’t feel fair now. It just doesn’t seem right. It’s a weird feeling…
 
Damn cigarettes.
 
It snowed, you know, as we drove home from the hospital that night. Oddest thing, too, but beautiful. Dark midnight sky the whole drive, and then out of nowhere…the most beautiful, angelic, snowfall over Green Hills! I remember shivers down my spine as we weaved down the long gravel road and snowflakes gracefully landing upon our windshield. I remember stepping out of the car and watching the snowfall’s soft descent. I remember looking skyward, inhaling deep, and smiling at the beauty. Your beauty! We like to think you had a hand in that snowfall. If you did, thank you! It was magical and much needed on a difficult night.
 
Today also reminds me of our family, our home, and simpler times of unlocked doors. It reminds me of riding bikes for hours upon gridded streets, swimming at the Pool, and walking to school, K thru 12. It reminds me of sitting in our driveway to watch Fourth of July fireworks. It reminds me of busing tables at IHOP, teaching kids to play baseball, and night-guarding at the Pool. It reminds me of bumper pool at Jeffrey Mansion, rip cords from the high dive, and timeless adventures along Alum Creek. It reminds me of our panel-sided station wagon shared by four drivers, three television channels (a fourth with PBS), and rotary phones. It reminds me of Family Feud at the dinner table, the clean plate club for dessert, and nerf hoop in my room. It reminds me blaring Molly Hatchet or Lynyrd Skynyrd or Boston in my room until you knocked for me to turn it down. It reminds me of hours spent on ballfields, playgrounds, and jungle gyms at Maryland, Montrose, and Cassingham. It reminds me of Ardmore and Stanwood and football cleats on Remington. It reminds me of comforts from Tommy’s, Rubino’s, and Grill ‘N Skillet…
 
I could go on.
 
And yet, this day also reminds me of our tough times. It reminds me of seeing your tears with the burial of your youngest son, Doug. It reminds me of your arm around my shoulders mending my broken heart. It reminds me of you offering a pack of lifesavers after losing to Grandview. It reminds me of you calling to share the passing of your father. It also reminds me of you apologizing for having cancer. It reminds me of your faraway look when the end was near.
 
All of it…forever etched in my mind.
 
That Christmas night, I remember holding your hand and trying not to cry so you could pass peacefully without worry for your family. I’ll never forget stroking your hair and whispering comforts and pleasant memories to bring even a crinkle of a smile to your face to help you through the pain. I remember you being as strong as you could, though hurting, to face the inevitable. When you were too weak to speak, I remember dipping a hand towel into your all-time favorite drink (Coca-Cola) and placing the towel at your lips so you could taste the flavor. I remember your smile, ever so slight, of appreciation and thanks.
 
Most unforgettable, I remember you finally letting go. I remember you opening your eyes, exhaling one last time, and then experiencing peace…incredible peace…then stillness. Strange stillness. That moment will stay with me forever. It was tragic, yet beautiful. It was solemn, yet loving. It was life…and, sadly, death. That night sobered me to what is truly important in our world and provided life perspective that has helped to this day.
 
Dad did his best to carry onward without you. He grieved and then moved forward as I’m sure you wanted, as I’m sure you two had discussed. He remodeled the Lake Adger home. He fixed the roof and landscaped the yard to keep himself busy. He traveled with his buddy and your old boss, Jerry. He took good care of your mother until she passed five years after you. Dad also remarried and, unfortunately, our family was never the same. Long story, as you may be aware, so I won’t go into it.
 
Anyway, rest assure today your children are doing well. Scattered to the wind, but doing well. Your oldest is teaching in Maine and nearing retirement – can you believe it?? Your youngest is teaching in Thailand and living the dream – yes, I know you can believe it! Me, well, I’m still in Ohio, but now a caregiver just as we laughed about when I was in 6th Grade. Remember that? Do you remember that professional aptitude test that said I should be a nurse! A Nurse!? Seriously? That clashed with my dreams of being a professional athlete or park ranger or mountain climber! We laughed hysterically that afternoon, as I recall, and then you said “hey, you never know!” Well…guess what? Here I am. After a 22-year career as an environmental geologist, THAT 6th Grade aptitude exercise hit the nail on the head. Going on eleven years now as a caregiver for an awesome young man. Who would’ve thought? Perhaps you?
 
Kristy and I are doing well and have a lot of fun together! This August we celebrate our 32nd Anniversary and we’ll probably do so per our usual…on the back patio with fun foods and drinks! We’ve become patio experts these days thanks to a little thing called Duchenne (more on that later) and now a pesky virus that has turned the world upside down. Everyone stays home now. Nobody really ventures far. Funny, though, home isolation has been commonplace for us for years, so our lifestyle hasn’t really changed all that much. Being homebound with your best friend keeps things grounded and focused to what matters in life.
 
Your grandkids are doing well, too. Kaitlyn (who was six months old when you left this world) is as beautiful as ever and…getting married this summer!! Kristy and I are super excited. His name is John and he’s a great guy. A gentlemen and a scholar, as Dad would say. Comes from a loving (and huge) family, too! He loves Kaitlyn dearly and fits seamlessly into our family. The two are fun to see together and we do quite often as they live nearby! Wish you could be at their wedding, though I know you will.
 
Your grandson, Alex, is doing well, too! You never met him but, as you may know, we adopted him from Romania about seven years after you passed. He’s 21 now! Can you believe it? The kid’s social and loving as ever! Always smiling, laughing, and looking to the bright side of life, though playing with a tough hand dealt to him through no fault of his own. I mean seriously. What the hell!? Perhaps you’ve heard of Duchenne Muscular Dystrophy. Perhaps not. If you haven’t, please seek some answers for me! I know that everyone deals with something, but come on…this disease stinks! When you get a chance, ask the big man why, because I don’t get it. Why does this disease even exist? Why is it needed? It’s relentless. It’s isolating. It’s invasive into everything about life. EVERYTHING! Ugh. Don’t get me started.
 
Sorry, too late.
 
Seriously, why is Duchenne even in this world? Why? Is it for perspective, as some have told me? Is it for example? Is it for stark contrasts of life? I don’t get it and I don’t think I ever will. I hear others tell me their belief or understanding as to why. I hear them explain how Duchenne is somehow part of a grand plan or something. Sorry, that’s easy to say, but a tough pill to swallow - especially for the one living with Duchenne…Alex. The disease is simply awful. It robs him of nearly every bodily function. All of ‘em! It’s painful. It’s constant. Worse, it’s unfairly destructive and isolating (physically and socially) to a beautiful young man. Why such cruelty? Why such torture? Why?
 
I don’t get it.
 
Nevertheless, Duchenne brings perspective - incredible perspective….just like your passing did. As much as Duchenne robs you of your physical abilities, it builds your emotional strength. As much as Duchenne destroys, it creates unique appreciation for everything around you. As much as Duchenne utterly sucks, it shines light squarely on the fragility, shortness, and beauty of life. It focuses on life meant to be lived, not taken for granted. Life meant to be shared, not squandered. Life meant to be loved, because before you know it…
 
Well, you understand.
 
So, anyway. Sorry I’ve rambled in this letter. That wasn’t my intention. My purpose was to say hi and mark the day that’s been seared in my mind for a long time. Today, June 1, 2020, I’ve now lived 57 years and 19 days….one day beyond the length of your awesome and loving life. Today, I am reminded of the preciousness of life. Today, I am reminded to love and stay focused on what’s important. Today, I am reminded of you.
 
So, thank you, Mom! Thanks for being you! Thanks for your laughter, support and, most of all, your love! I couldn’t be the man, husband, and father I am today without you having been our Mom. My hope is to pass that love and perspective onto my children (and grandchildren someday)…even if by simply sharing a towel dipped in Coke.
 
Miss you…and love you…more than you may ever know!
 
Your son,
Dave
 
P.S. Say hi to Dad for me! Tell him I miss him, too!

THE THIRD BRIDGE

We crossed another bridge last week, our third along this unwelcome journey. This time, we had been warned of the bridge’s presence, no matter our denial. This time, we had been notified of its inevitability, no matter our readiness. This time, we had been pushed uncomfortably towards its crossing, no matter our choice. The third bridge embodied life real and stark in the face of Duchenne Muscular Dystrophy. It forced recognition and understanding of Duchenne's gravity and certainty. Hard pills to swallow indeed. 
 
Nearly five years prior in a dusty parking garage of all places after a Cincinnati Bengals football game, we had crossed our first Duchenne bridge (http://www.davidlclick.com/blog/the-bridge). That’s when Alex first asked if he would die before the age of twenty. At the time, Alex was 16 years old and his awareness of his mortality was a bridge we had long feared to cross. But, we did, unexpectedly, though forever rattled by the loss of his innocence with Duchenne.
 
Eight months later, we crossed another bridge (http://www.davidlclick.com/blog/the-bridge-revisited). Then, in the middle of the night, Alex voiced hard questions about Duchenne and death. He demanded answers and he wanted them now! He wanted honesty and truth. No excuses. No bull. Give it to me straight, Dad. Will Duchenne kill me?
 
I’m telling you, that bridge was difficult to cross. No child should think about death, especially those so young. No child should feel the weight or burden of living with a terminal disease. That night, truth about life and death found resonance in our home, though tempered with caveats like nobody knows when and nobody knows how. We redirected with voices of let’s focus on today or let’s live life to the fullest! Though we still subscribe to these philosophies, deep down we knew truths shared that night merely delayed harder truths to come.
 
Well…sure enough.
 
Just last week we stood before the third bridge, at least that’s what I call it anyway. The span extended narrow and long and disappeared into a swirling fog. We saw no guardrails. We saw no end. Its crossing appeared one misstep or wind-gust from failure. A signpost at its beginning cautioned that truth…cold, hard truth…would be required while crossing.
 
I thought…Could I speak of the hard truths? Would Alex understand? Would I destroy his spirit? Was he ready? Was I ready? I wasn’t so sure. But, we had no choice. The bridge was our only path forward.
 
Several days prior, Alex’s doctors and I butt heads in a telehealth video conference call (http://www.davidlclick.com/blog/tug-of-war). THEY knew Alex’s future if he stayed immobile in bed. THEY knew his weakness would accelerate with unpleasant consequences should we stay in the status quo. THEY were frustrated with our understanding and cooperation.
 
Yet, as parents, we pushed back. WE saw the smile on Alex’s face. WE heard the laughter and shared in his joy every day. WE couldn’t take that from him, we argued. Sure, we knew the world of comfort had to change someday. But, why now? Why at all? Wasn’t life meant to be enjoyed as best possible? Wasn’t the smile on his face more important than anything? WE were frustrated with their understanding and cooperation.
 
Looking back, the doctors’ unimpressed faces on the telehealth video screen should have been our cue for capitulation. We should have realized the third bridge had to be crossed to move forward.
 
Oddly, my awakening came late one night while helping Alex drink water. It was well after 1 AM, a typical day into night in our household. Alex had been watching Season 6 of Flash…again. I had just finished the dishes and had walked back into his bedroom to help him quench his thirst.
 
As I held a Star Wars cup to his face and he sipped steadily through the straw, Alex stared at me without expression. His gaze felt uncomfortable, so I turned away and absently watched Flash. When the straw fell away from his mouth, I looked back to him and pulled the cup away. His expression hadn’t changed. He spoke no words. He just stared.
 
“What?” I asked.
 
Alex slowly shook his head, choosing to convey his thoughts without speaking. After a while, he did.
 
“I thought you understood?” was all he said.
 
I sighed, placed the Star Wars cup on a nearby table, and then turned back to face him. I knew what he meant. It was only a matter of time before we talked about it.
 
Alex felt betrayed. 
 
I don’t blame him, either. After passionately defending his comfort the week prior, I had changed my thinking and rather abruptly, too. Where before I argued for his doctors to approach his emotional and physical situation delicately, I soon realized our only path forward as they did. His doctors wouldn’t bend. They wouldn’t yield. They had seen Duchenne’s tragic progression before and knew a better path forward than the one we had chosen. Something had to change and it wouldn’t be the doctors.
 
It was me.
 
Kristy, ever the thoughtful and intuitive one in our household, realized this during a recent telehealth video conference call. The three-way call included Alex’s many doctors at the hospital, Kristy at work, and Alex and me at home. While Alex and I worked through technical difficulties on our end, the doctors explained to Kristy their unyielding position, one I had argued against the week prior. They also explained the gravity of Alex’s situation, one they knew all too well. Later that night, Kristy relayed the eye-opening conversation to me. Though at first I pushed back as I had before, my realization later changed.
 
It didn’t take long for Alex to pick up on this emotion. Over several conversations, Alex heard my subtle understanding and alignment with the doctors’ firm position. He observed my fewer and fewer head nods of support to his thinking and current situation.
 
“I thought you supported me.” Alex rephrased while staring.
 
“Alex, I DO support you and understand you,” I answered truthfully. “I hear you. Believe me when I say that!”
 
Ready or not, I had started our journey across the bridge. Each step seemed treacherous like I could lose him at any moment if I said the wrong thing or found the wrong footing.
 
Alex looked away. He didn’t want to hear it. Any of it. He lay shocked his strongest supporter no longer had his back. He lay frustrated in disbelief that nobody listened to him. He felt entirely alone. That sight hit me hard but strengthened my fortitude to help him. We had to.
 
“Alex, we will always support you. We are just as frustrated as you with everything.” I sighed, swallowed hard, and continued onward across the bridge. “But, here’s the deal….”
 
Alex paused Flash and just looked at me without emotion.
 
I explained that doctors needed to perform physical evaluations of him at least every six months. I explained if doctors did not see him then they could not accurately determine Duchenne’s progression and, as a result, could not safely prescribe medications. If they prescribed medications without timely evaluations, the doctors could lose their medical licenses. I explained that as much as the doctors love you, they will not lose their medical licenses for one person. 
 
Alex furrowed his brow because he was not impressed. This was nothing new as he had heard that argument before. He needed more than that to understand Dad’s betrayal.
 
I told Alex that without vital drugs for his heart, lungs, and overall health, Duchenne would win and his health would deteriorate rapidly.
 
Alex’s expression changed somewhat as he hadn’t heard that before, at least not to that degree. Still, he pushed back.
 
“Don’t they know I cannot get out of bed? Don’t they know my back hurts?” Tears glossed over his eyes because nobody, not even Dad, seemed to be listening to him.
 
“The doctors DO understand, Alex,” I answered. “But, they’ve seen it before.”
 
“But, I’m healthy!” He countered.
 
I agreed but continued leading Alex across the bridge. 
 
“Alex, your body is changing. You are growing. You are maturing. You will be 21 years old in a matter of weeks! Unfortunately, Duchenne also advances with time. For that reason, doctors MUST evaluate your health often to help you.”
 
Concern spread across Alex’s face. “Am I dying? Do they think I’m dying?”
 
“I don’t know,” I replied honestly. “But, I don’t think they even know. What I do know is they must see you to help you!”
 
“So, you’re saying if they don’t see me, then they won’t prescribe my medications?”
 
“That’s right.”
 
Alex put two and two together and then asked. “If I don’t get my medications, will I die?”
 
Strangely, I found the determination to confront Duchenne’s gravity and continued walking.
 
“Yes, probably.” 
 
“So, you’re saying I have to see them?” Alex probed one last time, though hoping for a reprieve.
 
“Yes! You have to!”
 
Tears filled his tired eyes. He shook his head in disbelief and mounting despair. He bounced his feet with nervousness and uncertainty. He glanced about the room to escape from this new reality. It seemed to him that not only his doctors had betrayed him, but also his Dad. It was near 2 AM and he felt alone in the world. My heart broke yet again seeing his struggle.
 
“Then, I’m stuck aren’t I?” The tears crested as he considered his situation.
 
Keep walking. Trust your steps.
 
“No,” I told him. “You’re never stuck. There’s always a way. ALWAYS! And we’re here to help you with every step.” 
 
I reached forward and wiped away his tears. I then shared how our path forward boils down. “Alex, last week you practiced hoisting, right? You lifted up and then lowered back down onto your bed. You did this multiple times! With success, right? Without pain!”
 
He nodded understanding and fought through his tears.
 
“This week, we’ll work to lift you up and back down, just like before. Only this time, when you go down, you will be in your wheelchair!” I then emphasized my faith in him. “It’s no different! You can do this! I know you can!”
 
“Are you kidding me, Dad! It is waaay different! The wheelchair is harder, my back will bend, my legs will fall, my, my…” He desperately sought excuses to push back but found no others. “I just can’t do it!”
 
Keep going. Don’t stop walking!
 
“Alex, you must! You can!”
 
Desperate for real answers, Alex challenged. “Why? Why must I sit in my wheelchair? I’m comfortable here in bed! I love my life as it is! Why must I be uncomfortable? WHY?”
 
You can do it! He needs you now more than ever!
 
“Alex, if you don’t get into your wheelchair…,” My throat lumped for what I was about to say. 
 
“If you don’t get out of bed…” I paused one last time before pushing forward.
 
“Alex, if you don’t get out of bed…you will die!”
 
Alex lay visibly stunned. I continued onward.
 
“We don’t want to lose you, Bud! And the doctors tell us WE WILL if you don’t get out of bed!”
 
I then shared with Alex horrible truths his pulmonologist had wanted us to know, though I had resisted for Alex’s emotional protection.
 
“Do you know about intubation?”
 
Alex shook his head. 
 
I then described the harsh procedure of forcing tubes down the throat, often done when lungs fail and need emergency support. I described tracheotomy and life thereafter. I went on to describe aspiration, pneumonia, and gastrointestinal tubes, and complications that can arise. I spared no detail, just as Alex’s doctors had wanted. Just as his doctors had warned where a supine life with Duchenne would lead.
 
Alex’s eyes held wide.
 
I then laid out the stark choice now before us. If he got out of bed, Alex would have discomfort, doctor visits, and prescriptions. If he didn’t, he had emergency care of unknown duration and most likely early death? As drastic as that seemed, I told Alex I would choose discomfort any day over death. ANY DAY!
 
“Wouldn’t you?” I asked him.
 
Alex nodded firmly and repeatedly.
 
That night, our life with Duchenne refocused. That night, the ugly realities of the beast came to our forefront and the path forward became clear. We knew what needed to be done.
 
The next afternoon, Alex loosely gripped the crossbar to his hoist and I awaited his signal to start cranking. It had been a long time since we last did that. Nearly ten months to be honest. 283 days to be exact.
 
Alex breathed deep, focused his resolve to push through his discomfort, and then nodded his readiness without even a glance my direction. I carefully cranked his hoist one crank at a time until the sling lifted him off his bed. I steadied Alex and then rolled him across the room as he stared skyward and nervous. I then gently lowered him into his power wheelchair and guided his legs so they wouldn’t fall off the sides. Upon seating and realization of no pain, Alex smiled wide and released a huge sigh of relief!
 
HE DID IT!
 
That day, Alex pushed through mental and physical roadblocks that had overwhelmed his life. That day, Alex smiled proudly, posed for pictures, and then led his Physical Therapist and Child Life Specialist on a rolling tour of our home while I changed his bedsheets. That day, Alex inhaled the fresh air and savored the sensation. That day, Alex changed his life!
 
Alex said that next week he wanted family board games at the kitchen table. He said he wanted to go outside for a walk. He said he wanted to roll around the neighborhood and visit whoever he could find (Mr. Field get ready!). Alex contemplated going to movies, stores, and bookstores, if not for this darn virus. He readied his fists for certain bumps with anyone he could meet.
 
Later, he summed up his achievement while hoisting back into bed for the night.
 
“It’s like a whole new world has opened up now.” He smiled. “Think of the possibilities!”
 
Yes, Alex. Think of the possibilities!
 
We then stepped off the third bridge and continued onward…together.

TUG OF WAR

Long ago, Alex and I attended a festival at his grade school, Clough Pike Elementary. Alex was nine years old at the time, a Third-Grader and a first-time power wheelchair user. Although the new wheels marked a significant milestone in life with Duchenne Muscular Dystrophy, we welcomed his wheelchair as it prevented falls from legs that could not support him anymore. As sad as it seemed for him to lose the ability to walk/run/jump/etc., we regained peace of mind for his safety and Alex reclaimed the proud smile of mobility and freedom, all essential tools when living with Duchenne.
 
Towards the end of the school year, the Clough Pike PTO held an outdoor festival to raise money for the school. Well attended by kids and adults of all ages, the annual festival exhibited a carnival-like atmosphere of fun foods, drinks, and games, along with a constant buzz and shrieks of youthful exuberance. The day included games of chance, bouncy houses, and giant inflatable slides. Kids ran in all directions with the urgent need to play every game and slide every slide before the day ended. Parents congregated and sipped coffees while keeping watchful eyes on their energetic children. Teachers strolled about simply enjoying a change of scenery beyond the classroom and daily routine.
 
As Alex and I rolled around the pavement looking for fun, we found activity near the front of the school entrance. There, some of his classmates were dividing themselves up for a traditional game of tug-of-war. The rope was loosely held between students as the sides formed quickly and predictably. Not surprising for their age, the war settled between a handful of 3rd Grade girls versus 3rd Grade boys. At this age, physical strengths were fairly equal, especially considering the girls side of the rope included several who are now collegiate athletes, mind you. The boys side included the usual suspects of budding young macho men thinking they could conquer the world.
 
Alex and I stopped to watch and cheer on the fun. This should be interesting we acknowledged to one another after seeing the mismatched participants.
 
Perhaps the boys sensed the unbalance, too, because when they noticed Alex watching from his new power wheelchair they immediately called for him to join their side of the rope. They wanted to use Alex (and his 500-pound chair) as their team anchor. Alex looked to me for approval and I nodded encouragement for his chance to participate. They hooted and hollered at their brilliant idea and then tied their end of the rope to a handlebar on his wheelchair. Victory was now assured, they claimed, the girls were going down! For Alex, he was just thrilled to be included.
 
With grips on both sides set, and the rope pulled tight, the 3rd Graders waited for the teacher’s signal to begin. The girls dug in their heels, grit their teeth, and focused. The boys boasted youthful confidence and talked amongst themselves how easy this would be against the girls, especially with Alex as their anchor. Alex glanced up to me and smiled, sharing his joy for inclusion, regardless of the outcome. I jokingly massaged his shoulders like he was a prizefighter, patted his back, and wished him good luck.
 
The teacher raised his arm, looked to both sides, and then snapped his arm down fast starting the tug-of-war.
 
The battle was on!
 
It was also over in a matter of seconds.
 
You see, the girls executed a coordinated pull with unbreakable determination. The boys lurched forward and fell shell-shocked, their eyes wide with disbelief that their collective strength failed them so quickly. We weren’t ready, they cried as they picked themselves up. That wasn’t fair, they pleaded. But, their words fell apart amongst the girls’ cheers because the tug-of-war wasn’t even close.
 
Almost an afterthought, poor Alex remained tied as the anchor. And, as a result, his power wheelchair now tipped forward and nearly over, if not for the chair’s foot-rest. Alex’s seatbelt saved him from falling face-first out of his chair and, worse, possibly being crushed on the ground beneath the chair’s weight. I leaped to save him and then used all my strength to lift him and his power wheelchair back to its upright position. The wheelchair landed back down to the ground with a thud as we looked to each other in shock.
 
Alex remained speechless and wide-eyed as I voiced profuse apology for not thinking through the consequences of tying a rope to his wheelchair. Thankfully, his shock and my apologies gradually turned into smiles and laughter that we still talk about to this day, nearly 11 years later.
 
I share this memory because the tug-of-war is happening all over again right now, in real-time, with real-life consequences, and (like before) we feel almost powerless to stop it. On one side of the rope is our family, anchored by our son Alex, living on the front lines of Duchenne. On the other side, Alex’s many doctors from Cincinnati Children’s Hospital Medical Center with years of experience treating young men with Duchenne. All of us are friends, like Alex’s 3rd Grade classmates, but reside on opposite sides of the rope because we see and experience Duchenne from much different perspectives.
 
As we have expressed many times to Alex’s doctors over the years, our NUMBER ONE goal for Alex is to maintain the smile on his face throughout this entire journey. From our perspective, a smile is vitally important to face each day and night with Duchenne as the road gets harder and rockier. From our perspective, a smile can help Alex live each day, hour, minute, or moment with Duchenne, in good times and bad. Simply, without a smile, life with Duchenne sucks. Period. Through the years, we have tried to make this point clear to his doctors, though it seems we often fail this communication.
 
I say this because Alex’s primary care doctors (pulmonary, cardiology, neurology, and endocrinology) have Alex’s well-being (and in particular his physical health) as their main goal, with secondary thought to the smile. They say it’s their ethical charge as doctors to provide the best care possible. They say it’s their legal responsibility to administer medications with a full understanding of his current condition. We completely understand this and are appreciative of their team approach.
 
But…therein lies the tug-of-war, and it’s downright frustrating. At times, it feels completely one-sided.
 
Like now.
 
This past Monday, we received a call from Palliative Care saying that Alex’s doctors (note: plural) wanted to video teleconference with Alex on Wednesday to discuss his health plan moving forward. They have never done this before and it appeared to be a new mode of operation. We eagerly agreed because it’s always good to talk or meet with his doctors, and establishing a plan sounded like a great idea. We also agreed because meeting via video teleconference seemed a fine alternative to traumatic ambulance transport and hospitalization via the emergency entrance as we did last October-November. The doctors knew Alex remained bedridden since his last hospital visit and has been for the last nine months.
 
But, the suddenness of the call concerned me. Why the rush…again…to see Alex? Did they not remember how things transpired last fall? Do they not remember the emotional trauma? Why the sudden urgency? Did they know something we didn’t? Did they have another idea of how to care for Alex, one more convenient than before? What gives?
 
We suspected their ultimate desire was to see Alex in the hospital as they did only four months ago. We sensed a repeat of last September where their rather aggressive telephone demands to see Alex unfortunately plummeted Alex into despair where he then questioned his purpose, his value, and his life (see blog posts from September-November 2019). That was a dark time in our household, and especially for Alex. As parents, our hearts broke for him and it took all our efforts (and those of his friends) to help him regain his trademark smile and joyful heart. We did not want to go down that road again.
 
On Wednesday of this week, a Palliative Care nurse arrived for her prescheduled visit to check on Alex. She was accompanied by prescheduled visits from Music Therapy and Child Life, two incredibly compassionate services offered through the Palliative Care group known as Starshine. But, when Palliative Care said they wanted a Social Worker and Chaplin to join the festivities, our radar went up to the importance of the video teleconference. Something didn’t feel right.
 
I told Palliative Care I would video teleconference with them FIRST and BEFORE including Alex so that we could be on the same page and not panic or overwhelm Alex as they did last September. I explained the emotional delicacy of the situation. They agreed (though they had no choice, in my opinion).
 
The call occurred this past Wednesday and evolved quickly into sides of a rope. I was on one end with the Chaplin and Social Worker sitting alongside though doing their level best to stay out of the video teleconference. On the small screen before me was a tiered conference room of doctors, nurse practitioners, assistants, and interns from Pulmonary, Cardiology, Endocrinology, Palliative Care, Social Work, and Psychology. Whoa…was my first thought. This feels a little out of balance.
 
THEY viewed me sitting alone at a table with a tan-painted wall behind me. I viewed them as if I were standing at a college lectern and looking out into a small auditorium. The whole arrangement felt surreal. I soon realized the benefit of our pre-video teleconference call before including Alex, and thank goodness I did.
 
After odd introductions from everyone who knew everyone, Alex’s doctors asked how Alex was doing and then voiced their strong desire to see him again. I updated them on his overall health and told them his smile is back and he loved life. They stated they wanted to see him again to evaluate his progress with Duchenne. I told them I understood but reminded them it had only been four months since our last visit. They concurred, but then reiterated their stance that they needed to see him again because they cannot help him if he remains in bed. I again voiced understanding but explained Alex’s situation is a little complicated because of his severe back pain and anxiety to move.
 
That’s when things got a little confrontational.
 
Alex’s doctors said if they cannot see him in person, then they cannot prescribe medications because they need an accurate understanding of his Duchenne progression before writing the prescriptions. I told them that feels like a threat and reiterated how a visit likely wouldn’t happen anytime soon. After much back and forth, their frustrations with the situation moved to a point where if they could not see Alex in the near future, then they could not continue to serve as his Duchenne doctors.
 
Whoa. Wait. What? Are you serious?
 
They said they were because they knew Alex’s historic track record of postponing appointments because of back pain. They also claimed to know very well the progression of Duchenne and they needed to see him on a more frequent basis moving forward.
 
I sat dumbfounded. Were these the same doctors who have been treating Alex like family, some for over 17 years? SEVENTEEN YEARS! Do they not fully grasp his life with Duchenne? I again explained the reality of Alex’s back pain and near improbability of his seeing them anytime soon. I shared his extreme anxiety to experience such pain again. I reiterated it had only been four months since our last visit.
 
“He is petrified to move!” I exclaimed. “You cannot do this to him!” I stated vehemently. “How could you cut off his meds!”
 
They claimed they would be forced to discontinue writing prescriptions because the law requires them to personally evaluate the patient and that Alex was not allowing them the opportunity to help him.
 
Excuse me?
 
“He adores all of you!” I shared. “If you abandon him, you will destroy him!”
 
On our side of the video teleconference, the Chaplin, Social Worker and I could hear Alex laughing in his bedroom with the Music therapist and Child Life specialist. I stopped the doctors and told them to listen to his laughter if they could. Not surprisingly, they could not.
 
I sat speechless.
 
Can you imagine if they said these things to Alex, as they had originally planned? Can you imagine where such an adult conversation would send him…again? Can you imagine the return of his angst, anxiety, and despair? Oh my God! Do they not understand? Do they not see the delicate balance we are fighting on the front lines of Duchenne every day? Do they clinically and coldly want Alex to see Duchenne as they do? The harshness. The ugliness. The bitter truth? Believe me when I say it, but we see it PLENTY. Every day! Every night! We need no bully reminders. Nor does Alex.
 
Thankfully, a Psychologist who sat among the primary care doctors stepped in and helped to calm nerves and voices. Thankfully, she helped to sort through my protective and defensive emotions as a parent and the medical needs of doctors, to explain the emotional impacts of Duchenne on everyone – especially Alex.
 
She explained that Alex remains in bed not necessarily by choice, but because he has created a comfortable world around himself as a mechanism to deal with his chronic back pain and anxiety…and as a means to deal with his life with Duchenne. She explained his desire to stay in bed was completely understandable and everyone should appreciate his ability to cope with such a terrible disease.
 
I silently thanked her and appreciated her support.
 
But, she also explained (as the doctors tried, though in less than desirable terms) this comfortable world will never change and will only worsen with time unless we helped (pushed?) Alex over the hump of getting him out of bed. I get that. Truly, I do. But, by God, don’t allow the doctors to approach this subject so harshly by threatening to stop prescriptions or stop being his doctors after 17 years of care!
 
After an hour of tug-of-war and after cooler heads prevailed, we reached an agreement to handle things with better emotional care but also to encourage Alex to get out of bed. We then moved the call into Alex’s small bedroom and continued the video teleconference with him as originally planned. They positioned the screen so their view was only Alex lying in bed, and his view was the all-too-familiar college lecture hall of doctors. I knew how I felt with that perspective, and I could only imagine how Alex felt with all these faces looking at him. Throw in five other adults standing and watching alongside at the foot of his bed (though out of view to the doctors), and listening to every word. Our two dogs and one cat, perhaps sensing unease, sat at Alex’s bedside.
 
But, as only he can, Alex handled the call with ease. He laughed. He joked. He listened and he responded…confidently and thoughtfully. The doctors handled the call well, too, thankfully, and avoided harsh statements they expressed to me not minutes ago. They actually impressed me with the delicate handling of difficult subjects. Still, I can only imagine how the call would have transpired had we not talked beforehand.
 
Although Alex tossed many sideways glances to me for help and sometimes paused hopefully for my intervention, I encouraged him to speak for himself. The doctors needed that voice. We all did! Everyone needed to hear the voice of the most affected in this battle with Duchenne. Alex was fantastic!
 
The call ended well with reluctant agreement from Alex that he would work towards getting out of bed. We would work with Physical Therapy and Palliative Care to practice hoisting every day for one week, then practice getting back into his power wheelchair every day the following week. The third week, Alex agreed to get outside or go somewhere out of the house. The fourth week, with extreme worry and reluctance, Alex agreed to appointments…in the hospital…as the doctors wanted.
 
The video teleconference call ended with enthusiasm and cheers of encouragement from the doctors (of course, right?). The call ended with everyone expressing confidence in Alex and the plan. So, what changed from roughly an hour before when we argued our positions? Perhaps the doctors had planned a gentler approach than the one they shared with me. Perhaps I worried for no reason and made something out of nothing. I can only imagine.
 
Or, perhaps more likely, it was the wise words shared by a Social Worker named Mark (who routinely calls Alex to help him cope with his back pain) who connected with Alex during the video teleconference on a personal…more important?...level when he quoted Yoda from Star Wars…
 
“Alex…do or do not. There is no try.” he said.
 
To which Alex beamed with understanding.
 
Looking back, it was a rough road to an agreement, but we’ll take it. We’re on the same page again, I think. The tug-of-war is over, for now, I hope.
 
Although Alex didn’t go tumbling down as I had feared, everyone can celebrate the accomplishment of receiving a commitment from Alex to get out of bed and resume his appointments in a timely manner. Everyone can celebrate the thought of seeing Alex in action, talking and laughing and fist-bumping with others…well beyond the walls of his small bedroom. Everyone can celebrate a young man who deserves the best care possible because he brings forth so much joy in others and it needs to be shared in this world. I just hope the exhausting game of tug-of-war never happens again, though probably will, as Duchenne advances.
 
Heavy Sigh.
 
 

​
As a postscript to this blog, I am happy to announce, with tremendous pride, that Alex successfully hoisted off of his bed on Thursday…without pain…three times!  This was a HUGE accomplishment because it was the first time he has hoisted off his bed since last June. That may seem a small achievement to some. But to us, this was a GIANT first step! I wish you could have seen Alex’s proud smile of accomplishment that he did it!

​                                                         He did it! He did it! He did it! Fingers crossed, but don’t be surprised if you see him out-and-about soon…in his element and chatting it up with whoever smiles with him.

WE THEN PUSHED PLAY

Alex knew what he wanted and he knew it would happen. All he needed was for Dad to get the ball rolling and allow things to unfold as he knew they would. Just do it, Alex said repeatedly. Just ask, he encouraged often. Have you written the letter yet, he inquired. Have you at least sent an email? He probed. Yet, to whatever he said, I responded with a smile to his adorable enthusiasm and a chuckle to his naivety because the odds were simply astronomical. Life just doesn’t happen that way, I replied. I think we need to lower our expectations, I cautioned. Although we always try to support his dreams, THIS one was simply too much to ask, I thought. For weeks, it seemed, I walked along the balance beam of complying with or tempering expectations.
 
Yet, he persisted.
 
As I have often shared in this blog, life with Duchenne is hard. It’s ruthless and unforgiving. It’s isolating and constricting to everyone, especially Alex who has been confined to his bed going on eight months now. Such is life, though, and we have learned to make the most of it with conversations, movies, games, and visits from family and friends. But, Duchenne never stops and never lets up. It cares nothing of your feelings or your discomfort. The physical and mental toll wears on you constantly, and teases you when you see others enjoying life as you wish you could. One such life joy nearly we thought taken from Alex was the latest Star Wars movie – The Rise of Skywalker.
 
For those unaware, Alex is a huge Star Wars fan. Let me put that another way…ALEX IS A HUGE STAR WARS FAN! I’m not kidding! He has watched every Star Wars movie at least a gazillion times. He has played every Star Wars video game until his PlayStation console either begs for mercy or begins smoking. Dressed in full costume, he has attended three Star Wars Celebrations (two in Orlando and one in Chicago) where he has talked with and fist-bumped celebrities like Mark Hamill, Billy Dee Williams, Warwick Davis, Anthony Daniels, Ray Park, Ian McDiarmid, Hayden Christensen, Peter Mayhew, and more. Practically every day, Alex watches YouTubers chat and debate about everything Star Wars and often corresponds with them via social media about a Star Wars topic or two. More than once, Alex has watched, in order, the entire sequence of Star Wars movies from the earliest Clone Wars through Star Wars Episode 8 - The Last Jedi. Did I say he was a huge fan?
 
So, when Star Wars Episode 9 – The Rise of Skywalker - released in late December, Alex lay in bed frustrated he couldn’t see the movie in theaters. He also refused to wait until the DVD came out later this year to see it.
 
Something had to give.
 
“Dad, contact Make-a-Wish Foundation!” He gave as an alternative. “Maybe they can help. You know we have never used our wish.”
 
I explained to Alex, age 20, he had aged out of the Foundation parameters for children under 18 years of age.
 
 “Dad, what if you wrote a letter to the Bob Iger, the CEO of Disney (who owns the Stars Wars saga), and explain that I can’t get to the theater,” Alex encouraged. “Tell him I am a huge fan!”
 
I nodded agreement to his cute fandom, but silently considered the improbability of success. Yah, right. Why would such an important person help us?
 
 “Ask Mr. Iger to send me a copy of the movie so that I can watch it in my room! Tell him my back hurts too much to see it in the theater. Tell him…”
 
As if he could see my glossy gaze of inaction, Alex pushed with determination and took matters into his own hands at far as he could.
 
“Look,” he said while balancing his cell phone on his chin and awkwardly pivoting his phone so I could see the screen (and his research). “Here is his address. I found it online. Just write the letter and send it! Please!”
 
Although his online research certainly impressed me, I nonetheless contemplated how not to burst his bubble, I knew he needed something to hold onto while lying in bed. I knew he needed some level of hope in the face of Duchenne to sustain his enthusiasm, his smile, and his joy. He needed something. We all did.
 
But, those odds…
 
At a minimum, I then entertained his request, looked at his phone, and read aloud the PO Box number to show him I understood his desire. I chuckled that a fan letter, no matter how true the fan, sent to a PO Box address at Disney would actually be read by anyone of importance, let alone the CEO! Deep down, I thought there is no chance of us seeing the movie before the DVD release. It was just a fact of life, I thought. I considered how to redirect his expectations.
 
Yet, he persisted. He did because he knew he would see the movie…and soon!
 
Lo and behold, THAT soon was last Saturday….and, to this day, my mind still cannot wrap around how it all happened so fast! I so wish you could have seen the smile on Alex’s face when he received the movie…from Darth Vader himself! It was magical!
 
Call it incredible coincidence, divine intervention, or any other such life explanation that works (hint…few do), but the culmination of events into last weekend absolutely blew me away! Heck it blew us ALL away, expect perhaps Alex, who persisted because he just knew! It was one of those life happenings that leave you speechless and shaking your head in wonder.
 
Consider how it all came together…and the odds of it happening as it did.
 
Really…just try.
 
You see, beginning in early December, two friends (who don’t know each other and live states apart) reached out to us without knowing of the other’s actions.
 
Vicki, an incredibly kind and loving woman who has treated Alex like one of her own sons for years, met the Star Wars 501st Legion at a holiday charity event in Cincinnati (the 501st Legion is an organization of adults living out their Star Wars dreams through elaborate character cosplay). She introduced herself and asked them if they would consider visiting Alex in our home. They told her to submit an official request to their organization because they are in high demand and receive many requests throughout the year, many dates already set. She did and, in a matter of days, they accepted the opportunity to visit Alex. They told her some available dates and she forwarded the dates to us for consideration and planning. After thanking her profusely, we selected a Saturday in early January. This past Saturday, in fact.
 
The odds get crazier.
 
Concurrently, a longtime friend of mine from high school, nicknamed Schotty, sent me a message via Facebook Messenger. Schotty has a heart of gold and is one of those guys who would give you the shirt off his back, if you needed. He hadn’t heard much from us following Alex’s recent hospitalization and was concerned if everything was okay. His message read as follows…
 
“Just checking in on you pal, haven’t seen any updates and I’ve been holding you in my heart as a father…I just want you to know I say prayers for all of you and think about you weekly. Hoping you are holding up my man…”
 
I replied my thanks for his checking in on us and for his prayers. I updated him on our current state and then innocently added that Alex is bummed he won’t be able to see the new Star Wars movie because of his back pain. For perspective, I added that even Star Wars cannot get him out of bed. I thanked him for thinking of us and wished him well.
 
Later that day, Schotty replied…
 
“…let me see what I can do…”
 
I wasn’t quite sure what he meant, but over several messages, Schotty explained how he knew several movie directors in Hollywood and that possibly…possibly…they could help. Schotty explained how he would pull out all the stops and favors to get Alex a DVD of The Rise of Skywalker. He added that if he could change but one moment in Alex’s life, where Alex could think of nothing but Star Wars and forget about Duchenne for a while, he would.
 
We were eternally grateful for his caring, but unsure whether Hollywood directors would take the time to consider a young man in Cincinnati, Ohio.
 
As Vicki, Kristy, and I texted back and forth about the 501st Legion’s surprise visit to Alex, Schotty updated he was still pushing to make things happen. Our fingers were crossed, but we held our excitement in check for fear of letdown. Still, we secretly considered the possibility of the two random events occurring together. Think of the odds if they did, we said to one another.
 
Then, THE DAY BEFORE the 501st Legion was set to visit our home, Schotty messaged me the following…
 
“In my possession is one copy of Star Wars! I’ll FedEx it to you for Saturday morning delivery. Enjoy with your boy!”
 
After I shared Schotty’s message, Kristy and I just looked at each other in amazement and heartfelt gratitude. Smiles crept across our faces and tears glossed over our eyes as we considered the chain of events and the caring of others. Was this really happening? Together? On the same day?
 
As we excitedly cleaned and prepared, decorating the house with anything and everything Star Wars, a FedEx truck pulled along curbside and we ran outside to greet the courier. Seeing our smiles, the friendly courier deduced the package he held and just electronically scanned was something special. When we explained to him what it was and how it all happened….independently and simultaneously, his arms dropped to his sides and his mouth opened wide in shock. Oh my God! That is incredible! His smile widened. You know, it’s deliveries like this that make my day! Thank you for sharing that. WOW!
 
We wished him well and then ran inside, excited for the arrival of family and friends, the 501st Legion, and the smile that only Star Wars could put upon Alex’s face.
 
Needless to say, the day did not disappoint! Everyone shared in the excitement and the excitement brought by two caring friends, Vicki and Schotty! Everyone was happy for Alex, including Darth Vader who later told me he couldn’t stop smiling beneath his mask as he handed Alex a Director’s Guild copy of the Star Wars movie.
 
Later that night, after the last of the 501st Legion had long departed, the dishes were washed and put away, and our home had settled from the day’s excitement, Alex, Kaitlyn, John, Vicki, Zach, Kristy, and I settled into our seats in Alex’s small room. We each held bowls of popcorn on our laps and beverages of choice in our hand. We dimmed the lights, inserted the DVD into Alex’s PlayStation, and sat back. We then pushed play.
 
…and we forgot about Duchenne for a while!
 
Mission accomplished, Vicki and Schotty! Thank you from the bottom of our hearts! Your kindness is appreciated more than you may ever know.
 
See, Dad. I told you!

WE GOT THIS - Part 2

In a windowless private room, isolated from the chaos of the Emergency Entrance to Cincinnati Children’s Hospital, Alex and I shared a quiet moment. Alex lay exhausted on a portable hospital bed alongside a wall of rainbows and animated stickers. I sat by his side on a hard plastic, metal-framed, guest chair. Our arms entwined along the edge of his mattress and our hands clasped by his hip. Contemplating the day, we stared absently into our sterile room, which included gray supply cabinets, a small sink, and a hand-sanitizer dispenser that had become our frequent friend.
 
After a deep sigh, I turned towards Alex and praised him. “You did, Bud! I know it was hard. I know it wasn’t easy.” I raised his hand in mine and squeezed for emphasis. “But, you DID it! You should be very proud of yourself!”
 
He was, I knew. Still, it’s always nice to hear it from others. Alex turned his head towards me and then smiled with tired accomplishment and appreciation. “Thanks, Dad.”
 
We held eye contact for a while before his head turned back, his smile faded, and his gaze drifted back towards the fluorescent lighting shining softly above us. He seemed lost in thought, but I knew what he was thinking. I had seen that look before.
 
It had been a hard trip for Alex, out of his bedroom and into the Cincinnati Children’s Hospital. Thankfully, the ambulance transport had been smooth and uneventful. Thankfully, the six-person Emergency triage team had expertly slid Alex from his gurney to the bed in which he now reclined. Thankfully, he had endured back x-rays without too much discomfort. Thankfully, Alex had resumed his social skills with everyone he met and now rested comfortably in our temporary room. Away from the chaotic sounds of the Emergency triage, we awaited further direction of our journey to assess Alex’s back pain and Duchenne’s evil progression.
 
It was a long wait.
 
We passed the time with random conversations of movies, TV shows, and friends. As only fatigue and boredom can derive, we animated the accents (Indian, Russian, British) and wisdom of Alex’s many doctors who we knew all too well and who we would surely visit during the week. We enjoyed a late-night visit from Kaitlyn and John who kindly brought us dinner (Penn Station and Chipotle!) and helped Alex feel at ease with his hospital stay.
 
But, with every lull in imagination, pause in conversation, or visitor exit from our room, you could see Alex’s thoughts drift back into the void. You could see his thoughts wander and feel his grip loosen from mine as he stared into the light above and contemplated his new reality. 
 
When I looked up, it seemed I could see it, too.
 
After we had been transferred to our exotic, glass-walled room in the Transitional Care Center (TCC) on the 3rd floor of Building A, Alex again looked towards the ceiling. He was exhausted, but you could see his thoughts still brewing. This time, the questions pushed through. It was near 2AM.
 
“Dad, will my back ever get better?” he whispered with tired hoarseness from the long day and night. Normally a talkative kid, Alex didn’t say anything more. He didn’t need to. Fatigue ruled the moment and his tone, though the question rang loud and clear. I sighed in understanding, and equal fatigue, and then replied quietly.
 
“It will, Bud. It will. Just give it some time. The doctors will help us.” I answered him honestly, though admittedly sought to delay an expanded conversation. I knew what he was seeking. I knew what he wanted to hear. He wanted solutions. He wanted answers. He wanted to be pain-free again so he could enjoy life as he wants. As anyone wants. Was that too much to ask?
 
“But, what if it doesn’t?” He sleepily persisted. “What if my back will be like this forever?” You could feel despair creeping into his mind.
 
I did not respond immediately. His question was valid. Heck, I thought about it, too. What IF his back did not improve? What IF this is his life moving forward? What IF this was as good as it gets? I hesitated to reply as because I knew the length of discussion it would encourage. His questions required full attention. Alex’s closing eyelids told me the conversation could wait. 
 
“Let’s get some sleep, Bud,” I told him. “Tomorrow will be here before we know it.” Alex nodded and then asked for a hug as he always does before bed. I did, kissed his forehead, and then lay down on the comfortable fold-out chair beside him. I knew we had a hard week ahead. I knew his difficult questions would return another time. As I contemplated how to respond, the rhythmic pulse of his Bi-PAP lulled us both to sleep.
 
You see, physical challenges are only half the battle with Duchenne. Sometimes, physical challenges lead your son to boundaries of despair where he questions his health, his present, and his future. Sometimes, the questions are triggered by acute pain or prolonged periods of discomfort. Sometimes, they appear out of nowhere. Sometimes, you can see them coming. When they do, your son questions his self-worth, value, or even life itself, no matter how positive he may seem. He asks will I EVER get better? is THIS my life? or any other such difficult questions that weave into conversation when you least expect them and linger longer than you would prefer. Sometimes, the questions are uncharacteristic of him and surprising, like do I have purpose? do I make a difference? do I have value? Sometimes, they are downright frightening, like should I even live?
 
When you hear such questions, you realize Duchenne in all its rawness. You see the disease beyond immobility and inability. You know it beyond isolation and loneliness. You feel it beyond pain and despair. When you hear such questions, you clearly understand our shared humanity and impact upon one another. You tell your son he DOES have purpose, he DOES make a difference, and his life IS important, just as much as anyone. You remind him how much you love him and how much he is loved by others, some he may never know. You tell him not to worry and that you are here for him…always. You are thankful, so very thankful, for others who express to him the same.
 
Like the very next morning in the TCC. Oh, how Alex needed this! Oh, how WE needed this!
 
Our morning started with frequent visits from nurses checking vital signs and administering medications to respiratory therapists adjusting pulmonary settings and mask fittings to doctors making rounds and listening to lungs breathe. The day continued with dutiful smiles and friendly encouragements. But, they all seemed so professional, so determined and businesslike. Such is life in a hospital.
 
Then, while enjoying a late breakfast of bagels and cream cheese, we were greeted by a knock on the door and a tangled parting of curtains that covered our glass door. To our pleasant surprise, in walked Courtney, a nurse from Neurology who Alex has known for years! Those who have followed this blog know how special she is to Alex and how she is one of Alex’s favorite people at Children’s Hospital.
 
“Hey, Buddy!” Courtney (aka Sara Silverman) exclaimed after comically untangling herself from the curtains. “How’re you doing?” She wore a huge, genuine, smile on her face as she approached his bedside.
 
Alex beamed with happiness for seeing a longtime friend. Holding a bagel piece still in my hand, I backed away from Alex’s mouth and allowed the two to reconnect. Her visit had come at the perfect time!
 
“I heard you were in the hospital so I wanted to stop by and see how you’re doing, Buddy!” Alex smiled wide for her thoughtfulness and kindness. Courtney then turned and pointed to the still-ruffling curtains. “And, look who I brought with me!” We followed her direction as the curtains tangled and parted again.
 
In walked Kenny-Benny flashing an equally large and energizing smile! Kenny-Benny is a longtime friend of Alex’s from the check-in registration desk at the Duchenne clinic, and he always puts a smile on Alex’s face. Today was no exception! Perhaps the biggest ever!
 
“How ya doing, my man?” Kenny-Benny asked as he, too, approached Alex’s bedside and then extended his trademark fist-bump alongside Courtney. And so began a 15-20 minute visit that fueled Alex for the upcoming week. Pain? What pain? Duchenne? What Duchenne? THESE interactions were just what the doctor ordered and, arguably, validated every ounce of effort to get to Children’s Hospital.
 
The welcome human interactions didn’t stop there.
 
Throughout the week, Alex befriended three shifts of nurses, practitioners, respiratory therapists, physical therapists, cafeteria food delivery personnel, and linen custodians. Throw in fellows, interns, and doctors from pulmonary, cardiology, endocrinology, neurology, psychology, psychiatry, physical therapy, rehabilitation, and palliative care, and our room seemed like a revolving door of visitors, friends, and soon-to-be-friends. Each and every one brought a smile to Alex’s face and joy to his heart. EVERY ONE of them! No exaggeration.
 
For example, knowing Alex would not be able to partake in normal Halloween trick-or-treating, the TCC staff visited his room in full costume to brighten his day and bring him treats. Moreover, knowing his penchant to ask questions with every person he meets (and after hearing our stories of Halloweens past), Alex’s nurses constructed a large question mark symbol for Alex to wear on his chest as Question Boy! To top it off, a respiratory therapist named Curtis came dressed to the hilt as Captain America after Alex told him he looks like Chris Evans, the actor, just the day prior. These simple, caring, and genuine acts of kindness and love helped Alex carry a smile and a happy heart to endure the long week of tests, pokes, and prodding. More importantly to us, they helped to lessen the impact of life with Duchenne.
 
Yet, late in the week, we were reminded of why we were at Children’s Hospital as reality with Duchenne reared its ugly and unwelcome head…as it always does no matter how hard you try to ignore it.
 
Late on Thursday evening, Kristy and I sat in a small room, around a small round table, with Dr. Sawnani, Alex’s pulmonologist, and leading care doctor. He wanted to talk with us alone, away from distraction, to discuss the challenging road ahead. He wanted our minds wrapped around realities and certainties. He wanted us to know the path we were on. We discussed pulmonary and cardiac progressions. We discussed muscular and skeletal discomforts, many like Alex was experiencing now. We discussed impacts on families, relationships, and most importantly our son. We discussed advanced care directives and how best to promote them. We listened attentively, challenged where necessary, and acknowledged reluctantly.
 
The meeting confirmed conversations Alex and I had with psychology, psychiatry, and palliative care on how best to manage Alex’s pain and anxiety in the face of Duchenne. We welcomed the team-approach to life with the monster, that has clearly moved beyond mobility, pulmonary, and heart issues and into new territories of coping, understanding, and reality.
 
Then, perhaps fittingly, after a Friday morning cardiac MRI showed no significant decrease in heart function (most notably his heart’s ejection fraction, or EF) and an overnight Holter monitor showed good heart rhythm, our ability to cope with Duchenne was put to the test. Or, perhaps, Duchenne just wanted the last laugh, I don’t know. Either way, late Friday was simply as demoralizing as demoralizing can get. 
 
After a zoledronic acid infusion and testosterone injection to help strengthen his bones, a heavy pain med to lighten the load for the trip home, and a flu shot, Duchenne sucked the wind from our sails and kicked us to the curb yet again. We were soooo close to leaving. We were soooo close to getting home. We had been officially discharged, signed paperwork and all! Instead, Duchenne stabbed Alex in the back, literally.
 
Our final act was to hoist Alex from his hospital bed and into his wheelchair for the trip home in our accessible van. We had practiced the hoist with dedicated physical therapists throughout the week…each time with success! We had their blessing the hoist and lift were performed correctly for patients with such severe back pain! They encouraged Alex to push through any discomfort, though said it would be minimal with the heavy dose of pain meds he had been given. But, as we too often find out, Duchenne had other plans.
 
As we slowly hoisted Alex, millimeters at a time, searing pain and heartbreak struck hard. Barely inches off his bed, Alex screamed that that his back was breaking with the slightest of bends in the custom sling designed for delicate maneuvers. We stopped and considered whether to encourage him to push through the pain and move into his wheelchair. We were SOOOO close to going home!
 
However, his loud and intensifying screams told us to abandon all efforts and lower him back down…immediately! Although the physical therapists encouraged another try, we declined. I had seen that look of terror in Alex’s eyes before (the night before his Senior awards assembly that led to his missing his high school graduation). This pain was real! We weren’t going anywhere.
 
We were then readmitted to the hospital until we could figure out how to get him home.
 
That night, the emotional side of Duchenne kicked into gear and the questions flooded back. This incredibly positive young man looked me in the eye and wondered if his life held value. He asked if he had purpose. He asked if this new life in bed was all there was for him to look forward to. What if my back never gets better, Dad? What if I can no longer get out of bed? What if it only gets worse? What if…?
 
I could only listen, acknowledge, and offer support as best possible.
 
His pain is not just physical anymore. As he stared again at the ceiling that night, he looked inward and expressed his worry outward. While his eyes focused somewhere above, he stared Duchenne directly in the face. It’s a scary thing to do.
 
He hasn’t done that very often. Alex is such a positive kid that sometimes he doesn’t even think he has Duchenne. To him, he lives a normal life, just like any other kid, just that he sits or lays down more than others. Sure, he is aware of his limitations. Yes, he knows his body does not move like others. But, his mind is sharp as a tack. He laughs and jokes with the subtlest of clues and smiles wide and often as much as he can. Those who have met him will agree. His happiness is a beautiful reminder of how life should be lived.
 
But, when that smile fades and when that laughter is swallowed, what then? THAT pain was visible that Friday night. THAT pain was emerging to the forefront. THAT pain is what we experienced arguably the first time and certainly not the last. And, to a degree, THAT pain was not just confined to our son.
 
I went home the next morning and moved (with the help of strong and awesome neighbors) Alex’s bedroom from the second floor to the first floor, into the space of my old office. On Sunday, we called for another ambulance ride to transport him home. The trip was less chaotic than the one to the hospital a week before. No sirens. No pain. No stairs to navigate. A simple transition from gurney to bed, that now resides on the first floor. Once settled and in the comforts of his bed, in his new room, Alex summed up his perspective after a heavy sigh.
 
“Dad,” he said. “My everything hurts.”
 
“I know, Bud. I know,” I shared equal exhaustion and frustration and then encouraged. “But, we’re here for you! All of us. You, me, Mom, Kaitlyn, John…everyone...even our dog, Toby (pictured above). And, you know what…we got this...together!”
 
It’s all you can really say.