david click

WITH ALL THE HEADWINDS

2/3/2021

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.

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A COUPLE OF THURSDAYS AGO

9/3/2020

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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.

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HEY MOM IT'S ME

6/1/2020

10 Comments

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!

10 Comments

THE THIRD BRIDGE

3/16/2020

7 Comments

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.

7 Comments

TUG OF WAR

3/7/2020

5 Comments

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.

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WE THEN PUSHED PLAY

1/14/2020

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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!

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WE GOT THIS - Part 2

11/27/2019

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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 it, 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.

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WE GOT THIS - Part 1

11/19/2019

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It’s surreal to see your child in pain. He cries for you to stop his pain, but you cannot. His eyes desperately search yours for answers, but you have none. He looks to you for help, though yours seems wholly inadequate against his distress. When pain strikes, his breathing quickens, pulse accelerates, and eyes widen in acute and frantic awareness. You rush to his side and tell him it’ll be okay, we’re here for you, or other such encouragement as you search for the right words, though find few. Despite your encouragement you feel helpless, and despite your strength you feel weak. It seems all you can do is hold his hand, smooth back his hair, and whisper comfort until his pain subsides and normality returns, if at all. In quiet moments afterwards, you agree it’s not fair and wish, too, that pain would simply leave him alone. All the while, you silently curse the beast for wreaking havoc in his life yet again.

Our most recent struggle with Duchenne began innocently enough. Alex’s doctors had called early on a Monday afternoon to express their critical and impatient need to see him and assess his health. They knew Alex’s back had been causing him serious problems for years. They knew Alex’s pain and anxiety had confined him to bed for the last five months. Add in vital importance to assess Alex’s heart and lungs, and his doctors’ reasoning was solid.

They said we could not delay. They had a bed available in the Transitional Care Center (TCC) at Cincinnati Children’s Hospital and we needed to act before it would be filled. Flu season would start any day now, they said, and a hospital stay then would be dangerous for Alex because of his weakened pulmonary condition. We considered our options (though knew the answer) while they awaited a response. After some discussion, we agreed.

“Okay,” they said with relief and confidence. “Here’s how it’s going to happen…”

Upon hanging up the phone, I wondered if we had done the right thing. Although Alex lay in bed, he was comfortable. Although he has had terrible back pain all summer and fall, the pain had been manageable for the most part. Reclined, Alex was happy…very happy! He smiled often and laughed frequently. Like always, he enjoyed movies, video games, and visits from friends. We enjoyed our time together as a family in the cozy comforts of his second floor bedroom. What more could we ask? Why rock the boat? Was it really necessary to disrupt such comfort?

However, we also knew the importance of getting him out of bed and back into the real world. Alex is a social kid, and needs connections beyond Mom and Dad. He loves movies, restaurants, and bookstores. He relishes communication with anyone, anywhere, anytime. He befriends complete strangers and compliments everyone he meets whether they notice him roll alongside or not. He pets every dog he meets, without exception. He forms a fist to bump for everyone who takes the time. If you engage, you’ll be friends for life. Seriously.

We also knew that for Alex’s doctors to manage his chronic pain and anxiety, they he needed to see him in person. They could not safely prescribe medications without a direct evaluation of Alex’s overall health. Likewise, we knew the importance of monitoring Duchenne’s progression and adjustments to health care as needed, especially for his heart and lungs. Thus, we knew a visit to Cincinnati Children’s was vital for many reasons.

But that smile! Why pull it from his face?

We knew a trip to 3333 Burnett Avenue would certainly introduce logistical complications. Because of Alex’s severe back pain, he could not sit in his wheelchair and, hence, could not travel as we normally do in our accessible van. Thus, he needed ambulance transport on a gurney to protect his back. Because Alex’s bedroom was on the second floor of our home, he would need to be carried down the stairs on a stretcher (note: because he could not sit in his wheelchair, we could not use our elevator). This, we knew, would be awkward even if performed by seasoned EMTs, because Alex is a big kid.

After hanging up with Alex’s doctors, I imagined how the day would unfold. I visualized calling 911 as they instructed, and explaining our situation. I imagined hearing the approaching sirens and seeing the ambulance’s strange arrival to our home. I pictured EMTs lifting Alex onto a stretcher, carrying him carefully down the stairs, and then placing him onto a gurney. I imagined Alex smiling, comfortable, and chatting with each and every EMT as they rolled him into a waiting ambulance. I like your mustache! I could hear Alex say. I’m a big Star Wars fan! Do you like Star Wars? I’m sure he would ask in hopes of engaging in intergalactic conversation. I saw myself needlessly reassuring him of his care as they closed the ambulance doors. I envisioned following the ambulance on the 30-minute drive to Cincinnati Children’s. I imagined an overall successful trip where we could address his pain, get him back to using his wheelchair, and get an important update on his health.

But first, I had to break the news.

“Hey Bud, today’s the day,” I whispered to Alex about an hour after speaking with his doctors. He was in a deep sleep and didn’t immediately respond, so I gently shook his shoulder and then repeated my unwelcome announcement over the rhythmic sound of his pulsing BiPAP machine. Alex’s eyes opened with disorientation that transitioned to acute awareness.

“Nuh-uh,” he voiced in a quiet yet nasally tone as his eyes widened.

I reluctantly nodded the reality and grimaced with understanding. Alex’s resistance was immediate.

“Nooooooo,” he pleaded. “I’m not ready!” His brow furrowed and his head shook in quick bursts of denial, each one hopeful to stop the plan that would begin right after lunch and after taking his prescribed pain meds for the trip. Tears soon welled within his eyes, crested, and then pushed down his cheeks as he mounted his resistance. Today was the day he feared, though he knew it would come.

He knew his doctors needed to see him. He knew Mark from Social Work called every week to help with Alex’s anxiety. He knew Beth from Cardiology phoned to voice her support for a visit. He knew Dr. Sawnani needed to see him to assess his lungs and breathing. He knew Michelle in Palliative care called often to check on his pain.

But, it seemed, we always found some reason to postpone – Alex just wasn’t ready or we had schedule conflicts. The Friday before, we postponed a Children’s visit because we had a house-full of family visiting from out of town. The week prior we postponed because Alex was just not ready. Before then, the same reason. Although, it seemed there was never a good time, a pattern was obvious to all.

Now, finally, a plan had been set in motion.

Alex was to go through emergency admittance and then move to the TCC for an inpatient stay and evaluation lasting up to a week. There, he could rest comfortably while doctors from neurology, pulmonary, cardiology, endocrinology, rehabilitation, physical therapy, social work, psychology, psychiatry, and palliative care could visit, evaluate him, and provide a care plan moving forward. There, Alex could get his x-rays, blood tests, CO2 monitoring, zoledronic acid infusion, EKG, Holter monitoring, and cardiac MRI. There, doctors could evaluate Alex’s current state of health and develop a plan for his comfort and well-being with an ultimate goal of getting him out of bed.

Still, Alex’s worry compounded. Although he was in pain, he hoped the doctors would, instead, come to him. Why can’t they come here? He cried. Don’t they know I can’t get out of bed? He pleaded. Don’t they know how much my back hurts? He begged. But now, with a plan in motion and squarely beyond his control, his eyes expressed fear as if he knew the outcome.

As we would soon learn, his fears were not unjustified.

His first call for help came when we heard the sirens echoing in the distance. It had only been a few minutes since I hung up the phone when emergency sirens first penetrated our walls and then grew louder with each passing second. Alex looked at me in desperation. Noooooo, he expressed with watery eyes. Not today! Not now! I’m not ready! I tried to lighten the mood and tell him not to worry and that we needed to do this.

“Dude, we can’t wait any longer,” I shrugged as if everything was out of my control. The sirens grew louder as they entered our neighborhood. I could see Alex tense up.

“Dad, pleeeeease!” He begged as fear gripped him hard and tears fell.

I told him it was for the best and then held his hands. We maintained eye contact a while longer before I told him I needed to go outside and meet the ambulance. “We got this,” I told him. “You can do it!” I encouraged. I squeezed his hands and then walked out of his bedroom and down the stairs. I unsuccessfully commanded our dogs to stop barking as I stepped outside to meet the first-responders. As I briefed the EMTs, I imagined Alex waiting upstairs alone. I could feel his anxiety. I could sense fear.

Moments later, two EMTs stood with me at Alex’s bedside and evaluated the challenge laying before them. As Alex chatted nervously, they considered how best to move an immobile 200+-lb body out of a second floor bedroom, down turning stairs, and then outside to a waiting gurney and ambulance. They realized their limitation and radioed for assistance, leading to the arrival of a hook-and-ladder fire truck and another fire vehicle along our now crowded curbside. Concerned neighbors stood outside their homes. The entire scene seemed overkill, but there was really no other way to get him to the hospital.

Alex nodded to me and then held his breath as five EMTs rolled him onto a stretcher. The roll was rough and elicited Alex’s first cries of pain. “Ow, ow, ow, ow!” He warned and then pleaded for them to stop. He asked to be rolled back as his back pain intensified. They continued as if they had a job to do. Within seconds they had him strapped onto the stretcher and then lifted on the count of three.

Alex looked to me in panic. Everything was moving way too fast for him. I reassured him he will be fine.

Alex begged the EMTs to take him back to his bedroom. He feared what was to come. He turned his head again to me, but our visual connection fell apart amongst the crowd of five EMTs carrying him on a stretcher. As they twisted around corners and carried him down the stairs feet-first, he screamed in pain that his back was hurting and that his already-turned-inward ankles were breaking against the stretcher due to gravity and steepness of the stairs. Alex pleaded for them to readjust his ankles, but they continued their awkward, step-by-step, march down the stairs. The descent seemed an eternity, as did Alex’s screams of pain and cries for help with each step. I stood helpless and watching from the base of the stairs. Our now silent dogs stood by watching, too, as their concern for Alex grew.

Once outside, they placed Alex on the concrete sidewalk to readjust their grip. He promptly screamed in pain that his back was breaking against the hard concrete. The EMTs promptly lifted the stretcher and placed Alex on the gurney. Alex looked to me with tears and pleaded. “Can we go back, Dad? Pleeeassse! It hurts! It hurts! What if my back completely breaks on the ride?” I assured him he was in good hands with the ambulance crew and they would drive safely. I set up Alex’s sip ventilation for him to use along the way, if he needed. I gave him a full hug, kissed his forehead, and then told him how proud I was that he was doing this. I told him I know it is hard, but he is doing it! Alex sighed deeply, gave a quick nod, and then flashed a proud half-smile between his tears before I stepped out of the ambulance.

While the ambulance pulled away, my mind raced for what had transpired and for the pain our son had endured. Should we have just stayed home? Should we have let Alex’s back heal in bed? Should we have pushed back against the doctor’s insistence to see him? What more did they need to know than they already knew? Duchenne sucks. Period! Why put Alex through such pain to confirm that understanding? What would we gain?

My emotions were a mess watching the ambulance drive away, and I could barely speak with concerned neighbors who stepped forward and expressed their support. I dutifully answered their questions to what was happening, though stood eager to disengage and jump in our van before my tears crested. Once in the van and driving to catch up with the ambulance, they did.

What had we done? Hours before our son slept peacefully. Hours before he had comfort. Our little family had normality. Now, we had pain, hard pain…and the week had only just begun.

God, how I hate this disease.

TO BE CONTINUED

7 Comments

LIFE OVERWHELMING

9/13/2019

9 Comments

She tried. She really did. You have to applaud her for that. But, little did she know, her effort was doomed from the start. Her attempt, though sincerely appreciated, would yield assuredly little agreement and certainly no desired action. This I knew.

He tried. He really did. But, he already knew his answer before she called. He knew she was only trying to help him, so he listened politely and uttered kind responses close to what he knew she wanted to hear. He knew she meant well and had his best interests in mind. He knew she cared for him deeply as they had developed a strong bond over the years. It just wasn’t going to happen. Not now. Not yet, at least. Maybe soon. The mountain seemed tall before him. He hoped that she knew that.

During it all, I sat on a nearby couch and listened with interest. I silently hoped she could convince him, and occasionally nodded and expressed background support to her efforts. But I, too, knew the answer before it happened, because I’ve lived the reality every day over the past couple of years. It’s a conundrum. It's emotionally and physically complicated. One side trying to convince. The other side hoping they would listen. One side thinking long term. The other side thinking today. I could see both sides.

Lurking somewhere in plain sight, Duchenne cared less. If I listened closely, I swear that I could hear the monster smirking, if not laughing outright.

Yet again.

So it was yesterday afternoon in Alex’s sun-filled, second-floor bedroom. Alex lay on his incline bed, as he has continually for the past four months. I stood alongside after repositioning him higher in his bed. We heard locusts resonating in the trees outside the windows. We heard neighborhood kids running somewhere in the distance, calling to another with utmost importance. We heard a distant lawn mover cutting the grass. Typical everyday life sounds we have come to know and accept.

Inside, we heard our watchful guard dog, Toby, barking downstairs at the very real threat of someone walking by our home. We heard Alex’s PlayStation 4 humming in wait for our monumental decision of which movie to watch. Today, was to be a father-son movie afternoon. Alex’s Batman – Arkham City video game paused frozen on the television while we discussed our options.

Then, Alex’s cell phone flashed an incoming call and played its Star Wars ringtone. I curiously glanced to the screen and wondered who would be calling on this beautiful afternoon, and saw a familiar number that belonged to the Neurology department at Cincinnati Children’s Medical Hospital. I suspected they were calling to check on Alex’s back pain and to find out if he planned to attend his semi-annual Duchenne clinic day scheduled for Thursday.

I told Alex he needed to answer the call and quickly draped his left arm above his head so he could then balance the phone on his chin, as he does to talk into the speaker phone (side note for perspective: This is how Alex positions his phone because he cannot hold the phone to his ear. If he needs to dial, he uses his tongue because he cannot reach the buttons from his hand hold and cannot raise his right arm/hand to type – it’s effective, for now, and a work in progress).

As the Star Wars theme continued, Alex glanced to me and smiled feebly. Great, he visually expressed. He knew why they were calling, too. He probably expected it as I did sometime that day. Alex sighed before sticking out his tongue, touching his cell phone, and giving a quiet greeting.

“Hello.”

The call itself was innocent. Beth, a cardiology nurse whom we have known for over a decade, had called to express her support for Alex’s visit. She knew of his pain and fear of movement. She knew Alex had not been out of bed since early June and once since April. She knew Alex had been anxious about the long clinic day and his endurance. But, Beth also knew the Children’s cardiologists needed an update on Alex’s heart condition so they could effectively treat and ease his progression with Duchenne. She knew the Children’s pulmonologists needed to listen to Alex’s lungs and see him breathe in person so they could effectively regulate his sip ventilation and BiPAP settings. His clinic attendance was important to them and vital to us.

I sat down on a nearby couch and listened, letting the two longtime friends reconnect.

Beth started by telling Alex how much she missed him and couldn’t wait to see him. She told him how EVERYONE in the Duchenne clinic asked about him in their staff meeting that day, when they heard Alex was on the Thursday schedule. She said Courtney, a nurse in neurology, couldn’t wait to see him and laugh together as they always do. Beth said that Mark, a social worker who had been calling Alex over the previous couple weeks to help his anxiety, couldn’t wait to see him in person and continue their ongoing Star Wars conversations. She said Kenny-Benny in cardiology check-in looked forward to catching up with Alex, share movie reviews, and extend fist bumps, as they always do. She added that doctors in cardiology, pulmonary, neurology, endocrinology, physical therapy, rehab, and palliative care all voiced their desire to see Alex - not just to check on his health and well-being, but to see is smile and share his laughter! Beth told Alex the entire Children’s staff considered him family and would give him a big cheer when he arrived because they knew the difficult time he’s had with his back pain. Most of all, Beth told him she couldn’t wait to give him a hug.

Heck, she had me fired up for clinic day!

But, knowing Alex’s severe back pain, I didn’t think a clinic visit would happen anytime soon. Alex had expressed reservations for months as the clinic day approached. The closer the day came, the more resistance Alex subtly provided. Still, because he knew of the clinic’s importance, Alex left open the possibility of him getting out of bed and traveling to the hospital. And, honestly, after hearing Beth’s enthusiasm, I wondered if she maybe tipped the scales towards a visit. Alex’s smile while talking with her seemed to indicate her success. I sat astonished and thrilled!

“You know who can’t wait to see you?” Beth explained and then continued before Alex could reply. “Courtney! She heard you were scheduled for clinic tomorrow and beamed with excitement!”

Balanced on his chin, Alex’s cell phone wobbled unsteadily as he smiled. He chuckled with pride. “You mean Sarah Silverman.”

“Who?”

“Courtney.” Alex answered promptly. “I always tell Courtney she looks like Sarah Silverman.”

“Oh! I know, I know! She brags about that all the time! You always make her day!”

Awkward silence followed as Alex struggled to hold his ground and phone, while thinking of Courtney.

“You know, we ALL can’t wait to see you tomorrow!” Beth continued.

Alex did not respond immediately. He knew what she was saying.

Beth waited for any response. Hearing none, she continued hopefully. “So, you’re coming right?”

Alex did not reply. He looked to me and sighed with frustration at the decision point Beth had so boldly introduced. His silence indicated to me that he remained non-committal. Still, I hoped he would agree to go to the clinic and nodded my head that he should tell her so.

Alex held firm and waited for Beth to speak.

Filling the silence, Beth added another line of encouragement saying that Mark in social work told her he has had great conversations with Alex over the past couple of weeks and really looked forward to continuing the conversations in person. Alex just stared at me and pleaded for me to bail him out. I let it ride because we were SOOO close to committal.

“So, you’re coming in tomorrow, right?” Beth pressed again. “We’re going to be seeing you, right?”

Alex tossed his head back in exasperation. You could see him thinking. Why are they making this so hard? Don’t they know I have pain? Don’t they know I just can’t? Doesn’t anyone hear me?

“I don’t knowwwwwww. Maybeeee,” he conceded feebly. You could tell he had hoped she heard his level of enthusiasm and would offer him an off-ramp. She didn’t.

I smiled and nodded my support for him to see all his friends in the clinic. I sat on the couch blindly happy and amazed at what Beth had been able to do – something I hadn’t been able to do for months! The maybe was as much commitment as I had ever heard from Alex. I was as hopeful as anyone when they ended the call.

You see, at 20 years old, Alex is facing a difficult road the doctors know all too well. They’ve seen it play out before and work diligently to delay Duchenne’s advance. They strive to support the young men in whichever stage they may be in, but the twenties are a pivotal period as things get real. The doctors can’t help if they don’t know exactly where young men are along the journey that becomes increasing hazardous and vital with time. Nearly as important, they do not want Alex to give up the fight. At all. Because without that fight, Duchenne is a short road.

But, in my mind, he did it! With Beth and Mark’s help, Alex had started his quest on the mountain before him! He faced his fear and took the important first step forward. I sat energized and waited for Alex to speak first. This was huge!

Then, after the call, Alex displayed emotions I had rarely seen before. His arms had fallen limp by his sides and his phone had fallen onto his chest. His head arched back and his eyes fixed somewhere on the ceiling above. I saw frustration, exasperation, and fatigue of his back pain. I saw worry, concern for the future, and touches of despair. I saw anger and resentment that no one was listening to him. I saw concern he would be letting his doctors down if he did not go to clinic. For the first time ever, I saw doubt in his ability to stay positive. The scene was heartbreaking.

I asked if he was okay.

Alex did not respond and only stared at the ceiling. I saw tears glossing over his eyes.

I rose from the couch and swiftly crossed the small space between us. No need to ask again. No need to use Dad wit to lighten mood. This was clear, heavy, and immediate. This was real! He needed human connection and reassurance for his feelings. He needed support no doctor could give. I bent down and hugged him tight.

While lawn movers continued their work outside and neighborhood kids moved on to another yard, Alex’s eyes clenched and the tears fell fast. He couldn’t speak. He could barely breathe from his sudden and deep surge of emotion. His arms remained limp at his sides, unable to return the hug, though I knew they did. His chest heaved against mine. Our heads pressed together. Our chins rested on each other’s shoulders. Tears poured.

“It’s okay, Bud. It’s okay.” I continually whispered into his ear. “We don’t have to go if you’re not ready. We can just reschedule for another time. It’s that simple.”

All I could do was hold him tight, tell him that it’s okay and that I understood. I assured him I would never let go and that he could always count on Mom and Dad (and Kaitlyn and John). Still, the tears flowed and his breathing quickened and stopped uncontrollably. I reached to retrieve his sip ventilation that had fallen away and offered it to his mouth. He took a few quick breaths and then leaned into me as best he could as the emotions flow. We stayed connected like that for a long while. It was a shared moment I’ll never forget.

Soon, through his tears and chest heaves, came the first words.

“Don’t they understand? Don’t they know how much I want to see them? Don’t they know how much my back hurts? Don’t they know…” he faded in frustration and then cried with conviction. “I just can’t, Dad! I just can’t!”

“I know. I know.” It was all I could think to say.

It’s been a hard couple of years for Alex. He missed his high school graduation last year because of severe back pain. He has missed countless doctor’s appointments for the same reason. He had been out of bed only a handful of times (once since April) over the past year as his back causes him near constant discomfort and pain. His muscles are tight and his bones ache. Palliative Care has prescribed patches, muscle relaxers, and opioids to help control his pain, but these work variably and with unpleasant, mood-changing, side effects. We have tried heating pads, gels, and other ointments to relieve his discomfort. We massage him daily and reposition him often to bring him comfort. But, nothing helps completely. Nothing. The medications only mask the pain temporarily, allowing it to return seemingly at will. It seems, like Duchenne itself, the pain lies waiting to disrupt life whenever possible. It’s enough to drive us crazy and sometimes does.

For Alex, his pain hasn’t affected him to this emotional degree until yesterday. While the pain surely dictates his life and his activity, he has learned to live with it the best he can as life moves swiftly outside his window. Sure, he would love to jump out of bed and run with his friends, peers, and anyone like he sees in movies, games, and television. Sure, he would like to walk, run, jump, etc. like anyone and everyone that surround him. Sure, he would like to visit friends and go places and travel and do anything, because the list is long. Sure, he would love to find a girlfriend and go on dates, picnics, and concerts. Sure, he would love to wrap his arms around someone for a hug.

But, he can’t.

Instead, he lays in bed every minute of every hour of every day, going on four months straight now. He watches television and movies, and laughs frequently. He plays video games and board games on occasion, and enjoys them immensely. He spends every waking hour surrounded by the same walls, ceiling, and windows and never complains. He hears the same sounds outside like locusts, lawn movers, and kids playing, and doesn't let it affect him. He hears Mr. Field bouncing a basketball in the driveway or rolling his garbage cans on trash day or talking with family in the driveway, and smiles. These are sweet sounds to Alex. He enjoys every familiar sound and loves life more than most people we know. He calls for our dogs and cats to jump onto his bed so he can pet them using only his fingers. Though his world is small, his heart is large, his smile is wide, and his love is genuine. I realize many know this, but it bears repeating because we should all learn from his approach to life considering his limitations.

After a while, Alex asked for a tissue. I pulled away, retrieved one from a nearby box, and then placed a tissue in his hand. I knew he wanted to do it himself. I knew his desire to be independent as his mobility decreased. I did not want to take THAT desire away from him. I raised his hand to his face so he could wipe his eyes and blow his nose (see picture above).

A few minutes later, my cell phone rang. It was Dr. Sawnani, Alex’s pulmonologist and all-time favorite doctor. He knew Alex was having pain and, like Beth, wanted to offer his support and encouragement for the next day’s clinic visit. He listened attentively to my recounting of our prior conversation with Beth, and the tears that still followed. He understood completely; he had seen it before. He knew Alex would not be coming in to clinic the next day.

Dr. Sawnani was noticeably worried for Alex, but knew this was not the time to push him. He knew Alex was overwhelmed with worry. He knew Alex needed time and, at another point, some strong encouragement to get the treatment he needs. Now was not that time.

“You know,” Dr. Sawnani continued. “I adore Alex. Like many of the Duchenne kids I see, he exemplifies how to live. He is so positive and upbeat! I just love him! If he needs a little more time, let him have it. He needs to hear that.” I concurred.

He paused before continuing.

“You know, Duchenne is such a horrible disease. I hate it. Sometimes, I wish I did something else because it is so exhausting and so heartbreaking to witness the emotional and physical toll upon these kids and families. Sometimes I wish I wasn’t a doctor so I wouldn’t have to see this progression every day. EVERY DAY. It is so hard.” He paused again as his voiced cracked with emotion, and then continued quietly. “But then I think of the kids and their positive outlook to this damn disease. Please tell Alex that I am here for him. That WE are here for him. Hopefully, sooner rather than later. Assure him we can help him.”

I didn’t respond immediately as I considered the future conversation with Alex.

As if Dr. Sawnani read my mind, he said. “I know it will be a hard conversation. I know Alex is in pain. But, we must see him to help him.” The remaining unspoken words couldn’t have been clearer.

I sighed heavily to the reality. “I know.”

Damn this disease

9 Comments

HAPPY JUNE!

6/13/2019

2 Comments

June is a pretty cool month when you think about it. It’s Summerfair and the official start of summer! It’s everything outdoors. It’s not too hot and not too cold. It’s sunshine, suntans, and swimming pools. It’s beaches, breezes, and bathing suits. It’s baseball, soccer, and cornhole, as well as 5Ks, triathlons, and marathons. It’s kids playing all day and into the night. It’s adults on patios enjoying a cold one or three or pouring another margarita. It’s lawnmowers, yard work, and sweat. It’s lemonade stands, slushies, and slow-moving ice cream trucks. It’s the nighttime sounds of crickets and locusts mixing with the fleeting sight of fireflies and fireworks. With June comes concerts on the lawn, blockbuster movies, and outdoor dining. Fitbit steps seem to multiply as do the miles on your family car during vacation. Simply put, June is packed with fun as it brings timeless days, eventful nights, and all-around good times!

But, did you know…

June is also Duchenne Muscular Dystrophy Awareness Month.

Yep, it’s true. You may or may not have known this. You may have seen a Facebook post about awareness to this lethal disease, or simply may have scrolled onward searching for the next cat video to share. You may have attended a local fundraiser, run a 5K, or completed push-ups in support of finding a cure for Duchenne. You may know of someone with Duchenne, and the challenges they face every day. You may have lent a hand every now and then and made someone’s day. In any case, you are hopefully aware of Duchenne Muscular Dystrophy, its cruelty, heartbreak, and unforgiving progression. And, sadly, you may be aware the disease has no cure.

None.

Nada.

Zilch.

…sigh.

But, sometimes, awareness is not just knowing about the subject itself. It’s not just knowing that Duchenne steals your ability to walk. It’s not just knowing how Duchenne affects every muscle in the body, including the heart and lungs. It’s not just knowing of the slow, torturous progression on all life fronts from health to friendships to simple everyday tasks. No, sometimes, awareness is to understand the life you have without Duchenne. Sometimes, it takes an appreciation of what YOU have, to be fully aware of what those with Duchenne don’t.

Consider your ability to…

Run to the store / Pump gas / Wipe a tear / Scratch an itch / Shoe away a fly / Climb stairs / Use your arms for a hug / Turnover in bed / Stand in a shower / Stand at all / Write a check / Sit up straight / Push an elevator button / Step off a curb / Move in sand / Scoot upright / Wash your hair / Lather your body / Raise your hand for attention / Open an umbrella / Lift a drink / Lift a fork / Lift a spoon / Cut food with a knife / Wave to a friend / Play catch / Go anywhere without asking for help / Move freely in a crowd / Throw a ball / Eat unassisted / Get into the basement quickly during a tornado warning / Avoid a ball flying fast at you / Lean in for a kiss / Carry a tray / Load paper in a copier / Carry a book / Tip back a cold one / Race out the door / Throw a punch / Open your wallet / Bounce a ball / Get quickly out of bed / Open a dresser drawer / Ride a roller-coaster / Swipe a credit card / Hold a menu / Pull up socks / Load a DVD / Step into a car / Load the groceries / Drink without a straw / Pat someone on the back / Reach for something on a table / Use a can opener / Breathe unassisted / Tear open a bag of chips / Use an escalator / Cook dinner / Have blood drawn without an ultrasound / Sit up straight / Help someone off the ground / Put coins in a vending machine / Descend stairs / Clean the kitchen / Make a sandwich / Scream loud / Hike steep trails / Extend a hand / Shield your eyes from the sun / Push a shopping cart / See where you are going in a crowd / Step over a exposed root on a trail / Wash the dishes / Shoot a basketball / Sit in comfort / Heap helpings from a smorgasbord / Go on a date without your parents / Pass the gravy / Step through mud / Charge your phone / Pick up a phone / Cross anywhere on a street / Climb a mountain / Use a hammer / Plant a garden / Park wherever you want / Arm wrestle / Empty the dishwasher / Tend to a garden / Open a gate / Wash the car / Open a microwave / Enter someone’s home / Cut the grass / Open a bottle / Dress yourself / Tie your shoelaces / Use playground equipment / Put on shoes / Fix a tight waistband / Position your legs for comfort / Position your feet for comfort / Trim bushes / Pick your nose / Open a door / Tie a tie / Spray a bottle / Have friends visit / Hit a volleyball / Open a wrapper / Fasten a seatbelt / Pull up your pants / Dance more than a wiggle / Use a toilet / Hold open a book or magazine / Wipe yourself / Brush your teeth / Comb your hair / Rub a sore muscle / Open a soda can / Close a door / Pull a wedgie / Step into a bathtub / Open a laptop / Stop yourself from falling / Wash your hands / Vacuum the carpet / Rake leaves / Use a Q-Tip / Stretch in the morning / Hold a hair dryer / Put your feet on the floor / Hold a phone to your ear / Cut your toenails / Recover after you stumble / Go through a metal detector without a beep and a search / Crack your knuckles / Reach for anything on a store shelf / Carry in the groceries / Enter a home other than your own / Use an ATM / Pull the covers up / Swat a mosquito / Put out a fire / Throw off the covers / Apply deodorant / Hit a drive / Retrieve something fallen / Pick off dry skin / Move furniture / Change the sheets / Plug your ears / Put away the dishes / Visit a friend / Wash a window / Run / Start a fire in the fire pit / Dive in a pool / Put on underwear / Clean a countertop / Play tug of war / Put on a bathing suit / Park in a narrow parking space / Move without children staring / Move without some adults staring / Reach into your pocket / Call out for someone's attention far away / Push away a dog licking your face / Slide down a waterslide / Use nail clippers / Stand and pee / Write your name in the snow / Make snow angels / Jump into a pool / Scan an item at self-checkout / Reach into a washing machine / Turn a key / Wave to a neighbor / Pull weeds / Arm wrestle / Hand someone the correct change / Look behind yourself / Defend yourself / Sit anywhere in a stadium / Reach into a dryer / Throw a ball / Kick a ball / Flip a hamburger on the grill / Catch a ball / Fix a wrinkled bedsheet / Wade in a creek / Turn on a faucet / Sit anywhere at the movies / Reach into a cooler / Turn your head far / Open a present / Fold the laundry / Curl up in bed / Step over a log / Sweat from exertion / Fill the pet water dish / Lift anything over a few ounces / Apply sunscreen / Shovel the driveway / Clap your hands / Turn a doorknob / Feel ground beneath your feet / …

…to name a few

(note: these abilities are not all-inclusive. Much like life, Duchenne affects everyone differently. This is just our experience.)

Now, think about how you would react if you lost any one of the abilities listed above. Think how you would feel if you would lose two or three. Or four? Consider if you lost all of these abilities, with more certain to come. How would you react? How would you cope watching others do what you cannot? How would you go about your life…everyday? How would you feel knowing it will only get worse?

This isn’t to paint a dark or bleak picture of Duchenne. No, far from it. This blog is meant to bring you awareness for what YOU do every day that some cannot do at all. This is to remind YOU of abilities you may not even think twice about and to remind YOU of what those with Duchenne have lost.

Think about that.

What we generally take for granted, is an ability gone or soon-to-be-gone for those living with Duchenne. What we may consider second-nature, is a desperate and distant hope for others. For abilities we wouldn’t give a second thought about, those with Duchenne can only snort and shake their head…if they haven’t lost that ability already.

So, take pause this June and be aware. Not just of Duchenne, but of your life and what you CAN do. Be aware of the mood you carry, its source, and its effect on those around you. Be aware of how you would live if you didn’t have any of the abilities listed above. Be aware of abilities not listed above that should be. Be aware of what you consider your misfortune.

Then, be aware of someone living with Duchenne and consider how they live. Think of how they smile, laugh, and love…DESPITE their adversity, want, and knowing. Think about their growing isolation. Think about their increasing immobility. I challenge you to listen to them whine and complain about what they do not have. Listen hard, because you may not hear it. Better yet, spend time with them and see how they view this life we share. You may be surprised, because we can learn a lot from Duchenne, more than we may fully grasp otherwise.

This June, know that a person living with Duchenne…

…LIVES with a disease they did not ask for,
…LIVES with a disease through no fault of their own, and
…LIVES with a disease that steals a part of them every day.

Yet, they smile…

…because they can,
…because it feels good, and
…because they see life’s goodness as you should, too.

Yet, they laugh…

…because they can,
…because it spreads cheer and makes life better, and
…because it can be shared.

Yet, they love…

…because it’s beautiful, healthy, and positive,
…because it’s human, and
…because more than anything, it’s the one ability Duchenne can NEVER take from them!

HAPPY JUNE!

HAPPY DUCHENNE MUSCULAR DYSTROPHY AWARENESS MONTH!

Thank you for being aware.

Now, let’s make some Smore’s!

2 Comments

BECAUSE OF KYLO

4/17/2019

4 Comments

The rhythmic sound of Alex’s Bi-PAP filled our Chicago hotel room last week and my heart. The sound was not only peaceful and soothing, but life-sustaining as it pushed air deep into his lungs to help him rest peacefully and give him strength for another day. The sound was not only calming and reassuring, but grounding as it blended with the metallic clang of elevator doors outside our room, random honks of aggressive drivers beyond our window, and distant knocks in the hallway from busy housekeepers. The sound was not only real and vital in our battle against Duchenne Muscular Dystrophy, but also served as a steady reminder of our son’s dreams, our responsibility to help him live those dreams, and the awareness that we have today to make those dreams possible.

Still, something didn’t feel right about the sound last week. The Bi-PAP’s rhythm seemed unsettling and unnerving. It seemed foreboding, like an ominous warning from somewhere dark and sinister. For some reason, the equipment’s mechanical, pulsing sound made it seem like we had been transported to a galaxy far far away and that Darth Vader himself stood nearby, breathing hard and certain.

KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR

Or, more likely, Star Wars had taken over my conscience! It wouldn’t be surprising.

You see, Alex and I attended Star Wars Celebration 2019 in Chicago last week, and the five-day event was nothing short of mind-blowing! It was Star Wars, Star Wars, Star Wars…everywhere! Seriously EVERYWHERE! Signs, posters, and exhibits featuring anything Star Wars filled the cavernous McCormick Place Convention Center. Star Wars celebrities, personalities, and hosts occupied stages, signed autographs, and posed for pictures with enthusiastic fans. Unique galaxy props, toys, and clothing for sale tempted you at every turn. Superfans hosted panels of Star Wars trivia, Star Wars collectibles, and how to build droids, to name a few. Elaborately costumed fans roamed the convention space and willingly posed with anyone, like one big Star Wars family! Honestly, with the tens of thousands of fans in costume every day, many carrying lightsabers, and most wearing smiles, this event would leave you in awe of humanity!

We met people from all walks of life, all parts of the planet, and all parts of the galaxy. We met fans dressed as Obi-Wan Kenobi, Darth Vader, and Luke Skywalker. We saw fans dressed as Anakin Skywalker, Princess Leah, and even George Lucas! We met creatures from planets and galaxies too many to name. We spoke with celebrities and hosts, who made Alex feel a part of it all. And, as typical with Alex, we befriended parking attendants, janitors, ticket scanners, security personnel, and more. It wouldn’t surprise me if Alex was now pen-pals with the BBQ sandwich cart vendor, who we purchased lunch from every day.

“Hello again, Kylo! Want the usual pulled pork and a water?”

It’s human (and alien) connections like these that are most appreciated and fill the heart!

For example, following the opening panel featuring Star Wars - Episode IX – The Rise of Skywalker, a burly security guard noticed our struggle in crowd gridlock. He quickly came to our assistance, told us not to worry, and VOCALLY parted the crowd for Alex’s wheelchair to follow. After expertly parting the masses like Moses and the Red Sea, the kind and surprisingly gentle man bowed and offered a fist bump as if he had just helped the leader of the Resistance!

At another panel, a blind man sitting next to us overheard Alex saying the overhead lights caused him dizziness and we should leave. The man tapped me on my arm, removed his hat, and then kindly offered it to Alex so he could shield his eyes. Dizziness averted! Panel enjoyed! Friendship established! Afterward, we returned the hat and chatted with the friendly man from California who loves Star Wars as much as Alex. His young daughter dressed as Rey stood alongside and shared her excitement as well!

In the parking garage, a security guard on a smoke break saw our time-consuming efforts of releasing tie-downs, exiting our van, and then repeatedly lifting and repositioning Alex for comfort in his wheelchair. The grizzled security guard dropped his cigarette, swiveled his foot on it, and then nodded us over while cautiously looking around. The helpful man then ushered us through some doors, into a security warehouse, and then through a “secret” door that opened DIRECTLY onto the Celebration main floor! This awesome act of kindness allowed us to avoid thousands of fans at entry checkpoints and helped us enter the Celebration without delay.

“I figured you needed every advantage you can get,” the kind man said with a smile and a wink. “Come back here every day, and I’ll help you out!”

We thanked him profusely as he added, “Enjoy your day, Kylo!”

(Side note: it’s these random acts of kindness that make living with this hard disease so bearable. EVERY time, it puts a smile on your face and warmth in your heart that people care!)

Yet, despite these wonderful people, Star Wars Celebration 2019 also had a dark side through no fault of its own. Because of the sheer volume of fans, many overlooked Alex as if he was invisible. I realize this may be hard for some to understand because Alex is so social, but when you are sitting in a wheelchair you are generally below line-of-sight and often not seen. Most people looked forward and ahead to see where they are going in the mass of fans and seldom looked down to a kid so desperate to share his passion for Star Wars. On top of that, most people were focused on getting to the next panel, finding that unique collectible, or searching for autographs and photo-ops. Few took notice of a reclined Kylo Ren seeking human connection while trying to navigate his way.

“Hey, man! I like your costume!” Alex would say sideways from his reclined position. After no response, he would try again. “Do you like my costume?” He waited politely for a few seconds but watched as they walked away and engaged enthusiastically with someone else.

“Hey bro, did you see the Episode IX panel?” He prompted others without success. “It was awesome, don’t you think?” He continued in hopes they would hear him though didn’t. Silence usually followed his attempts, along with the sight of another costumed backside walking away.

“Do they not hear me, Dad?” He would ask. “Don’t they see me?” He would plead. “Don’t they know I’m a fan, too?” Despite his disappointment, he rolled onward towards another costumed fan, hopeful for connection.

This isn’t to say people were rude. No, far from it. Most were just oblivious to Alex’s desire to share his passion and to communicate with someone other than Dad. It’s a hard thing for others to realize when they don’t look down in a mass of people. It’s a harder thing to explain to a kid who craves human connection. Most times, people only noticed Alex when they nearly collided with his wheelchair, apologized, and then moved on. Other times, the noise of the Celebration was simply too loud for his soft voice to overcome from a reclined position. Some absently stared as they passed or didn’t know what to say to a young man leaning back and sipping portable ventilation. The downside of these missed human connections was that it unmasked and compounded Alex’s severe back pain.

“Dad, my back really hurts again! Can you lift me back?” He would say while we weaved aimlessly through the crowd. We saw an open spot along a wall and rolled towards it. We then performed our lift-back acrobatics (again), readjusted the layers of his costume fabric, and repositioned his red lightsaber across his chest. Before we moved on, we made sure his glove-covered hand had a solid grip on his lightsaber so it would not fall off his lap, though did often.

As much as the Celebration was fun, this trip was a taxing. The drive to and from Chicago was hard. The multiple tie-downs in our accessible van were hard. The transfers in and out of bed were hard. Moving through the parking garage, Celebration space, and masses of people was hard. Throw in rush-hour commuters, notorious and unavoidable Chicago potholes, and a blizzard with three inches of slushy wet snow, and the entire trip was downright exhausting for both of us, physically and mentally.

Through it all, Alex sat in a constant state of discomfort. He adjusted and reclined his wheelchair often and needed repositioned frequently. He took prescribed pain meds to help manage his pain and counted the hours until he could take some more. He slept long hours and skipped panels he had wanted to see so he could rest. He fell asleep during our daily commute and sometimes during panels where talk droned (ahem, Droid Builders). He asked to leave early each day so he could rest in the hotel bed. He ate dinner in bed most nights. He forced himself awake most mornings and pushed himself onward each day because he wanted to celebrate his passion – Star Wars – with hopes of sharing his passion with others.

Every day, Alex dressed as Kylo Ren. Every day, the young man wore a black long-sleeved pleated shirt, a long black flowing robe, a loose black full-bodied hood over his head, and a black leather glove on his left hand. He carried a cross-barred red lightsaber across his chest and rolled onward through the crowd despite his discomfort and pain. He offered a smile and a nod to every person who looked down and engaged in conversation with those few who took the time. Every day, he clenched his hand in hopes of a fist bump with whoever noticed.

He is the toughest, most determined, kid I know.

We left the five-day Celebration a day earlier than planned. We did because Alex’s body was simply spent and he wanted to conserve his energy for the long drive home. Despite his exhaustion, we had a great time! We lived everything Star Wars, enjoyed our time together as father and son, and filled our days with as much as Duchenne and his ailing back would allow.

Today, as I reflect on our third Star Wars Celebration, I cannot help but smile with the memory. I do not only for the fun we had or for the adventure we shared in a galaxy far far away. I do not only for the memories of standing against the wall enjoying delicious BBQ sandwiches, teasing him about his desire to take a picture with a scantily clad Princess Leah, or seeing his satisfaction one night with Chicago-style deep dish pizza. I do not only for meeting kind strangers who didn’t need to help us but did in the most memorable and simplest of ways. I do not only for those who took the time to chat with Kylo and help him forget about his back pain, if only for a short while. I do not only because of the push of air that will now forever sound like Vader.

No...I smile because of Kylo, and his determination to make the best of a tough situation, live life to the fullest, and fulfill a dream despite the constant headwinds of living with Duchenne.

KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR………….KHOOOOH-PUUUHRR

Until next time, Chicago!

May the force be with you!

4 Comments

THE SILENT BATTLE

3/8/2019

8 Comments

A silent battle accompanies life with Duchenne, one you seldom reveal. It does as you think of where you’ve been, where you are, and where you’re going with the monster. When you hear of the newly diagnosed, you cannot help but relive your nightmarish introduction to the beast, reluctantly nod with understanding, and then shake your head in familiar disbelief. When you reflect on the Duchenne journey you’ve since traveled, you snort with incredulity for what you’ve overcome…some challenges considered impossible, most dreamed improbable, all simply unbelievable.

You then contemplate the path yet ahead, if you’re so lucky, and imagine yourself doing what those currently before you do every day. You wonder if you’ll have what it takes, as they seemingly do…the patience, perseverance, and fortitude to push through the certain difficult days and nights. You wonder if you’ll have the strength for hand-to-hand combat when the going gets tough. With your son's mobility long since vanished, you read of ventilation, tracheotomies, and feeding tubes, to name a few. You learn the hazards of aspiration, pneumonia, and cardiomyopathy for starters. You sigh heavily and try to shake the worry and fear, though it lingers deep, patiently awaiting its turn on your front lines, if it isn’t there already.

I say this because everyone living with Duchenne (son, parent, grandparent, or sibling) endures this silent battle whether they show it or not. Too often it’s unspoken, though it occupies your every thought. Too frequently it’s dismissed, though you can never let it go. Too perilously, it swings between I got this to WTF, as you live the phrase you ain’t seen nothing yet. As the disease weaves its way into every aspect of your life, from health to relationships to employment to finances to education to transportation to friendships to…I could go on, you wonder…Can I stop the freight train? Can I make a difference? Can I mend the heartbreak? Am I able?

Yet, you push onward.

As you watch your son grow older, you share his hardship. You understand his struggle to keep up with others, maintain old friendships, or find new ones. You feel his frustration when he cannot do things he wants to do. You pick him up off the ground when he falls, carry him on our shoulders when he cannot walk, or guide him gently via a lift to his wheelchair so he can simply move. You feed him, groom him, and support him any way you can. You smooth back his hair and hug him tight as he seeks connection while his immobility advances. You comfort his fears and mounting disappointments as his isolation grows. You listen and acknowledge how it’s unfair and how you know it hurts as his world shrinks. You encourage him to live, laugh, and love each day because it’s the only way. On tough days, you tell him it’s okay, we can overcome this, you can always count on us, or any other expression of strength, perseverance, and support. As often as possible, you tell him you are loved. Because he is and needs to know it.

But, as you wash your son’s hair, clean his body, and groom him in ways he cannot, you sense it. When you stretch his muscles in determined hope to slow inevitable tightening, prolong use, and simply buy time, you feel it. When you pick him up after falling down or lift his hand to his mouth because he cannot, you live it. Pain. Frustration. Anger. Sometimes, despair.

Oftentimes, the beast dangles hope before you and then snatches it away if you dare reach out. Despite your strength, it steals your sleep and tires you endlessly. Despite your patience, it tests your limits and escalates your frustration. And, when you enjoy that rare moment of normality, you learn not to get too comfortable because Duchenne often gets the last laugh, sometimes mocking you the fool to think otherwise.

This isn’t to say all is lost with Duchenne, it isn't, nor that hope does not exist, it does. Today, Duchenne research advances faster than ever before, encouraging hope for a cure. Drug trials targeting the heart, lungs, and other muscles, seek participants every day in hopes of slowing Duchenne’s progression and lighting the way. Advocates raise our community’s voice and lobby legislators to support funding towards it all. For those young enough to benefit, hope is very real and encouraging. For others…

Yet, you push onward.

That’s where my silent battle currently resides. As much as I fight against the beast, it grows. As much as I push it away, it returns. As much as I want to scream, it smirks. The battle is frustrating, infuriating, and enough to fill this normally peaceful man with emotions I dare not admit. Duchenne maintains a pressure on your throat, your heart and your soul that is constant, progressive, and downright evil. Do you think you can escape me? It challenges. Do you think you can ignore me? It dares. Do you think I care? It mocks. You beg and pray for the monster to leave your son and family alone. But, it doesn’t.

While you fight, you see other families living with Duchenne, some seemingly quite well. You see videos of boys walking longer than expected or standing strong and able, and smile for them. You read of young men attending college, working jobs, or getting married, and you’re happy for them. You read of Duchenne families traveling the world, getting out and about, or simply moving without pain, and you cheer them. You see parents, families, and friends running 5Ks, marathons, and even doing push-ups to raise money for a cure, and you give kudos to them. All fantastic and wonderful in their own right. All deserving of our support. Yet, all leaving you to wonder Am I doing enough? Should I be doing more? Am I losing the battle?

Yet, you push onward.

Through it all, you carry a smile and project strength, or at least try, because of those counting on you. Friends scurry about their lives, so you keep your silent battle from distracting them. Family knows too well the burden and what is required, so you share and keep it together. Your son looks to you for strength, so you give it and keep it positive as best you can. All the while, you push back against the rising tide while battling the persistent beast.

And yet, sometimes all it takes to keep fighting, to keep pushing, is an ear to hear the frustration, nip the anger, or cleanse the soul. Sometimes all it takes to keep fighting is a long hike in the woods, where your thoughts can wander, your breaths can deepen, and your priorities can straighten. Sometimes all it takes to keep fighting is a visit with family and friends to reconnect and restore life’s normality. Sometimes all it takes to keep fighting is pizza and beer on a Friday night or time spent on a summer patio to keep alive your hopes and dreams. And, more than anything, sometimes all it takes to keep fighting is to hear your son’s beautiful burst of laughter, fulfill his simple request for a hug, or hold his loving hand in yours to remind you of where you’ve been, where you are, and where you are going.

Onward…always onward.

Together

8 Comments

SITTING WITH GEORGE

1/10/2019

2 Comments

With life comes perspective. You’ve heard this from me before, but it’s an absolute guarantee. Sometimes it arrives disguised and slow. Sometimes it smacks you hard and fast. Oftentimes when it knocks, you open the door wide and welcoming, inviting it inside like an old friend. Other times, you may curse and push back against its bully behavior. Either way, perspective shapes you and guides you into the unique person you are today. It molds your heart and defines your soul. It speaks for you with and without words and projects your character unto the world. The challenge we face, though, is to recognize when we have it, and use wisely for the benefit of everyone.

At least, that’s how I see it.

I say this because I grow so tired of reading, hearing, and seeing people berate, degrade, and downright stomp on others solely because of differing perspectives, solely because of differing politics, race, religion, or supposed privilege or lack thereof. Republican or Democrat, black or white, Christian or Muslim (or any combination of the world’s vast beliefs), legal or illegal, rich or poor, Buckeye or Wolverine…I’m sick of it. If I read another all-knowing Facebook or Twitter post that includes unnecessary words such as deranged or lunatic, I’ll puke. If I hear generalizations such as elitists, whiners, or extremists, I’ll scream. Add in such fine and thoughtul flattery like nutjobs or libtards and I’ll swear off social media for the rest of eternity. No joke. It’s tiring, juvenile, and ultimately sad for everyone.

But, strangely, these observations are why I LOVE Duchenne!

Seriously.

Believe me, never in my wildest dreams as a Duchenne parent would I think to ever say that I LOVE Duchenne but, in this case, I do. Duchenne is grounding. It’s raw. It strips life bare of most absurdity. It cuts through the crap we put upon ourselves because Duchenne is human reality. A cold, hard, and unforgiving reality. And with it, Duchenne brings a perspective of life on how to live…in real time and space. Not tomorrow or yesterday, but today. Right now!

Mark my word, there is no fake news about Duchenne. It sucks. It’s isolating. It’s exhausting. It’s brutal and relentless. Yet, it’s life. Hopefully, there will be a cure someday so that no young man or woman (and family) has to live with this monster ever again. Hopefully, Duchenne will be a distant memory for all who live with it today and a foreign concept to future generations yet born. Hopefully, Duchenne will never see the light of day again.

Hopefully…

Sigh.

But, for now, Duchenne is here to stay and it’s universal. The beast exists across ALL borders, races, and socio-economic standings. It holds no regard for cultures, beliefs, or political ideals. It could care less about any fabricated crisis that humans place upon another merely for the benefit of an agenda. Silently destructing at the genetic scale worldwide, Duchenne simply claims its next victim and goes to work destroying human life one muscle fiber at a time, sadly stealing young lives every day before their prime.

So, I ask you, why waste time putting down another so we may stand taller? Why silence an opposing view without listening to what it may have to offer and considering its benefit even if it doesn’t involve us directly? Why shout your thoughts and beliefs hoping the increased volume will drown any opposition and pave an easier path? Instead, why not take time to listen, cooperate, and encourage one another? Why not take time to live, laugh, and perhaps love despite our differences? It’s not that hard.

From my perspective, we may learn something about ourselves, if we did.

I say this because of what I am fortunate to experience every day as Alex’s primary caregiver. I say this after wiping his mouth, nose, and butt every day. I say this after applying lotion to his skin, brushing his teeth, and washing his hair, to name a few. I say this after experiencing HIS joyful approach to each day and the love he exudes for everyone he meets. Seriously…everyone (if you doubt me, you need to meet him).

Think about his approach to life.

When you cannot…

…stand, walk, or run,
…sit up, shift your body, or lift your arms,
…eat or drink without assistance,
…clean or groom yourself without help,
…scratch an itch or swat away a mosquito or bee or spider crawling up your leg,
…breathe without support, or
…simply move your body the way you so desperately crave,

…yet you STILL smile, laugh, and love…You know how to live!

When you are alone and wait, sometimes days without end, for others to simply…

…include you,
…invite you,
…call you,
…visit you, or
…remember you,

…yet, you STILL smile, laugh, and love…You know how to live!

When you can swallow the pain of…

…loneliness,
…heartache,
…fear, and
…the unknown,

…yet, you STILL smile, laugh, and love…You know how to live!

When you help others to feel better about themselves despite your adversity…You know how to live!

How I wish you could hear the frequent bursts of laughter coming from Alex’s room…when he has only his thoughts, video games, or movies to entertain himself. If you did, you would hear a content and happy heart and a free and joyful soul…despite Duchenne. How I wish people of the world could adopt his smile when relating with others and extend a fist to bump instead of a fist fight. If they did, they would see humanity’s goodness as Alex does…despite Duchenne. How I wish to always remind myself to let go of frustrations that admittedly overwhelm me sometimes and see life as Alex lives it. When I do, I experience the beauty life has to offer…despite Duchenne.

For me, THIS is how to live. THIS is what brings joy to my heart and compassion for others less fortunate. THIS is what makes life’s pettiness disappear. Not stubbornness to prove one’s self worth. Not righteousness or supremacy or belief or entitlement above another. Not as we are seeing the world behaving today, seemingly everywhere, top to bottom.

Duchenne is life exposed. It’s raw. It’s rare. It’s priceless. And, at no time is this more apparent in our household then during our days and nights sitting together…with George.

I’m not sure when Alex came to be known as George. It just kinda started one day long ago when Kristy referred to Alex’s curiosity in similar vein as the children’s literary character, Curious George. You see, Alex asks questions. LOTS of questions! So many that we nearly costumed him one year as Question Boy for Halloween (though he paraded the night as Captain Jack Sparrow, if I recall). Nonetheless, the name George stuck. And to this day, we refer to our time with Alex as Sitting with George.

It’s a peaceful time for our little family. Alex typically rests in his incline bed watching whatever he likes on television (because of his chronic back pain, Alex is most comfortable in bed instead of his wheelchair). Usually, he’ll watch a YouTube channel of someone playing a video game and narrating the experience (yes, this IS a popular thing these days) while Kristy and I and/or others sit on an adjacent couch and do our thing while spending time with him. On weekends, we are often joined by Kaitlyn and John who play video games with Alex or watch a movie or try a hot sauce challenge including fun and interesting questions. Alex’s good friend Zach will often bring another PlayStation console to play video games alongside Alex and silently bond through mutual gaming experience. We’ll host extended family gatherings, New Year’s Eve celebrations, and even a HS graduation ceremony equipped with a marching band…Sitting with George.

Every night, we’ll share family meals in Alex’s room as well as routines of Bachelor or Bachelorette on Mondays, America’s Got Talent on Tuesdays, Ellen, Jimmy Kimmel, Jimmy Fallon, The Voice, The Four, The Golden Globes, The Oscar’s, The Emmy’s, The Grammy’s, etc…you get the picture. We laugh (sometimes hysterically), cry, and scream at the antics only mass media and too much time spent together can provide. You name it, we watch it (or fall asleep to it)…together, as a family, while…Sitting with George.

Call us boring or whatever, I don’t care. But, I’ll take this lifestyle with Duchenne any day. It’s simple. It’s fun. It’s loving. It’s bonding. Sure, we’d love to hop in the van and cart our family to a school sporting event or concert. Sure, we’d love to jump up and run outside and toss a football, baseball, or shoot hoops in the driveway. Sure, we’d love to take family vacations somewhere exotic and warm, or climb mountains or water ski or travel the world.

But, we can’t. So, we don’t. Because sometimes life doesn’t work out as planned.

And, that’s okay.

Instead, and as Duchenne advances, we make the most of living with the unwelcome monster. More importantly, we lean on each other and do so together…as a family. I’m not sure how we’d be able to cope with Duchenne otherwise. The cool thing is that as Duchenne accelerates, we’ve learned that life slows down while Sitting with George, allowing us to enjoy every moment while we have it. Together. Be it helping Alex eat or drink, listening to him explain a movie fact or test our knowledge, or watching him navigate a video game with the utmost concentration while he simultaneously talks about anything and everything, it’s a life simplicity unlike few other. We’ll take it!

And, from my perspective…I wouldn’t trade it for the world.

“Okay, George! What’s on tonight?”

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THAT SPARKLE

12/6/2018

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It’s been said the eyes are the window to our soul. This holds truth as they often express our state of mind, our level of happiness, and the love we feel. They convey our joy of life and allow us to spread that joy to others, should we choose, sometimes with just a glance. When accompanied with a smile, our eyes shine light upon the world and open gates to understanding, caring, and compassion when we need it most. And, when we look deep into another’s eyes, the shared connection tells a story, a personal story, with unspoken words of truth and sincerity, no matter how terrifying the moment may seem.

This is one of the reasons I feel fortunate to experience life alongside our son, Alex. He gets it and works to spread his understanding as much as he can, despite his limitations. Like many young men living with Duchenne Muscular Dystrophy, he travels through life with a unique combination of adversity and joy. He cherishes human connection more than anyone I know. He looks beyond disappointment or worry or fear to live the moment with hope, happiness, and love. While he sees others run strong and free, he smiles in the face of immobility and constant pain. While he relies on others for nearly everything, he finds the joy in every day. While he lays in bed more often than not, he laughs for any occasion because he can. And, the beauty of it all is that given time, Alex will have anyone smiling and laughing along with him because…well, simply, why not?

I share these observations after attending the Louisville Supercon with Alex last weekend. Not counting two overnight visits to Cincinnati Children’s Hospital during the past month, this was Alex’s first overnight trip away from home in nearly two years. As you can imagine, he was ecstatic to get out of the house for a change of scenery. He looked forward to a mini-Dudes Trip filled with adventure, jokes, and late-night chats. He looked forward to meeting people from all walks of life, but especially celebrities he follows closely in movies and television. Although he worried mightily about his stubborn and aggravating back, he was determined…determined to make the trip despite his pain.

We stayed in a hotel a few blocks from the convention hall in downtown Louisville. Within moments of our arrival, not surprisingly, Alex befriended reservation desk clerks, hotel staff, and hotel guests while I unloaded the minivan. Every time I passed him, he was complimenting strangers and working his magic to get them to smile.

When we were ready to roll, I pulled Alex away from his new best friends and loaded him back into the minivan because it was pouring rain outside. Although we had planned to walk the short distance from our hotel, it is a well-known fact that a wet power wheelchair is no fun (nor are wet feet dangling beyond the umbrella’s protection). Somehow, we had to get closer to the convention hall and fast. The day was a-wasting!

While searching for parking, we stopped at a red light alongside an underprivileged man sitting in a wheelchair on a street corner. He had no legs and clutched an umbrella tightly to his chest while balancing a handwritten, cardboard sign. Despite the downpour, we could hear him singing.

“I’m siiiiiiinging in the rain. Just…siiiiinging in the rain.”

While Alex and I waited for the light to change, we made eye contact with the man.

He smiled and waved.

We politely smiled and waved in return.

“How’re we doing today, my friends?” he shouted loud enough for us to hear through our closed windows.

The man was a panhandler, no doubt. Homeless, possibly, as his wet sign declared. Yet, here he was on the corner, alone…and singing…in the rain. Say what you will about panhandling, but the scene hit a soft spot in our hearts. Perhaps it was the wheelchair connection. Perhaps it was our understanding of the mobility challenges the man likely faced every day. Perhaps it was the rain soaking him while we sat dry and protected. It could have been any number of reasons. But, for me, the look in his eyes said it all. They were friendly, happy, and singing…despite the rain.

I pushed a button to lower our minivan window. Before I could speak, he shouted again.

“A beautiful day to be outside, don’t you think!”

I chuckled along with him and replied. “Absolutely!”

We then handed the man some cash because anyone that happy and helping others to be happy deserves as much. As we then proceeded through the intersection, I glanced in the rear-view mirror to see him continuing his song. His enthusiasm to make the best of his difficult situation rang a familiar tune. I glanced to Alex in the rear-view mirror.

“What?” Alex countered.

I smiled and shook my head. “Oh, nothing…”

The parking garages around the convention were full, so we parked curbside to the event and I dropped off Alex about a block from the entrance. This meant leaving a young man alone on the sidewalk (under a building overhang) until I could return to escort him to the entrance and inside. The thought of bad parenting crossed my mind. The thought of milk cartons entered my thinking, too! But, hey, Alex was 19, I rationalized. Good to give him some personal space like all fine young men his age, I justified. I nervously watched him roll down the sidewalk with a young couple as I drove to find parking. What did I just do?

When I returned to the convention hall, a little damp and winded, Alex was nowhere in sight. A slight panic swept through me as I scanned the sidewalks and large atrium inside. The feeling soon disappeared when I found him inside and talking with a cosplay character dressed as Flash. I approached to smiles and laughter as if they had been long lost friends. They barely recognized my presence.

"Oh! Hi, Dad. This is Steve," Alex introduced.

So began our day inside the Louisville Supercon.

We picked up our passes and headed towards the main convention floor. We fought through the crowds and vast number of comic vendors. We contemplated t-shirts, posters, and pins. Before long, we found the celebrity section near a far wall and stood in disbelief at the number of celebrities sitting or standing by their tables, including…

Henry Winkler (Happy Days)
Alice Cooper (Hall of Fame Rocker)
Sam Jones (Flash Gordon)
John Wesley Shipp (The Flash)
Butch Patrick (The Munsters)
Brett Iwan (the voice of Mickey Mouse)
Steve Whitmire (voice of Kermit the Frog)
Charles Martinet (voice of Mario and Luigi)
Kevin Conroy (voice of Batman in animated series and PS4 games – Alex’s favorite)
James Mathis III (the voice of animated Black Panther series)
Ricou Browning (Creature from the Black Lagoon)
Ralph Macchio, William Zabka, and Martin Kove (The Karate Kid Movie)
Mark Henry, Sergeant Slaughter, Booker T, and Kane (WWE Stars)
Michael Rooker (Yondu in Guardians of the Galaxy)
Sean Gunn (Kraglin in Guardians of the Galaxy)
Walter Koenig (Star Trek)
Characters from Star Wars, Walking Dead, and the original Power Rangers
…and many others. Including actors Alex elected to bypass because he didn’t know who they were (William Shattner, Richard Dreyfuss, and Linda Blair)??

We had a great time, and throughout the weekend a few celebrities rose above the rest. One such memory was meeting Ralph Macchio…again, as we had met him before at the Cincinnati Comic Expo over a year ago. The charismatic Karate Kid connected a fist-bump greeting and then listened as Alex mentioned they had met before.

Ralph rubbed his chin in thought and then enthusiastically snapped his fingers with a genuine smile and rich New York accent. “You know what? I DO remember you! No, I’m serious. How could I forget you? How could anyone forget you? How have you been, my man?” Ralph then squatted to Alex’s level and off they went into long-lost friendship chat while I stood idly by as the forgotten third party. As the two traded memories, movie scenes, and more fist bumps, their smiling eyes filled their faces and mine! Their “re”-connection made the trip worthwhile, and certainly allowed Alex a reprieve from his discomfort for a while.

The good feelings weren’t just shared with celebrities! We also ran into a challenged young man sitting in a wheelchair who couldn’t stop talking about how he met his favorite actor. While the young man held a signed DVD to his chest, his mother explained how her son watches Happy Days every day and couldn’t wait for this day to come to meet Henry Winkler. I distinctly remember the chill I felt when the young man shared…“I met The Fonz! I met The Fonz!” and waved his signed DVD case for us to see. His smile stretched wide across his face and his eyes gleamed with happiness for meeting his idol. You couldn’t help but feel good for the young man and his family, thanks to the kindness of others like The Fonz.

It’s scenes like these that make you appreciate humanity. The connections go beyond an autograph, a handshake, or a conversation. They persist despite the stormy weather and an inconvenient red light. It’s taking the time to recognize each other as fellow humans, no matter how famous or well-known, no matter how able or not, and no matter how wet or dry. Personal connections validate our humanity, goodness, and hope for our future. They strengthen and sustain us for the days we need them most, which can be often and trying. And the beautiful thing is, they can be initiated and shared with the simplest of actions.

I say this because one of the most memorable celebrity meetings at the Louisville Supercon was also the most unexpected. Late in our first day at the convention, a large, muscular, man stepped forward from behind a celebrity table as we approached. He came forward to greet Alex, but his face held expressionless as he walked slowly, steadily, and methodically towards us. Deep down, I wanted to run, but the man’s unnerving, piercing stare held me fixed in place as if my feet were set in concrete. I glanced to Alex to gauge his reaction, but his smile told me the feeling was all mine. I drew a sharp breath and stood firm.

Soon, my fears evaporated the more we talked with the man. Within minutes of chatting with Alex, this menacing monster of a man melted into a new friend. His apparent thirst to inflict harm had turned to smiles. His terrifying exterior had softened and turned to laughter. Before long, the man paused and then shook his head in awe. A smile spread wide across his face as he stared at Alex.

“Man, there’s just something about you,” he said sincerely. “You’ve got that sparkle!”

Yes! He sees it! I sighed in silent relief. From the joy in his eyes, I could see we had nothing to fear.

It warmed my heart this monster of a man recognized the joy Alex brings to the world. It’s a gift many young men with Duchenne possess and share. Perhaps it's their ability to see the world through an unfiltered lens. Perhaps it's their ability to cut through the world’s noise and see humanity the way it should be seen…caring, compassionate, and supportive. Real.

I say this because we are ALL human…in this life…in this time. It doesn’t matter what possessions we own or job we have or office we hold. It doesn’t matter where we come from, the color of our skin, or what language we speak. We are ALL human and our lives affect one another more than we’ll ever know. And, sometimes, all that is needed to make the world a better place is the shared sparkle in our eyes.

Try it.

We thanked the large man standing tall and still, and then turned to roll away towards another celebrity. Despite the man’s kind words and the time he took speaking with us, there was just something about HIM that I couldn’t shake. I nervously looked back over my shoulder to make sure he wasn’t following…slowly, steadily, and methodically.

You see, it’s not often one receives such kindness from the actor better known as
Jason Voorhees….from Friday the 13th.

Thank you, Louisville! These dudes had a fun time!

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THE INFUSION

11/9/2018

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Duchenne Muscular Dystrophy is a hard disease on so many levels. It restricts, steals, and threatens. It demands attention at every turn and bullies at every opportunity. It never sleeps. It spreads, camps, and seeks no forgiveness for the wake it creates or the destruction it leaves behind. It constricts everyday movement, comfort, and convenience. It impacts friendships, travels, and careers. It arrogantly isolates, suffocates, and disregards. It demands attention every day. It could care less about you or the life you thought you would lead. In short, Duchenne is enough to make you scream, cry, and question, which I do quite often, admittedly.

On the other hand, Duchenne brings with it an incredible perspective unlike many other. It brightens as it darkens, amazes as it frustrates, and loves as it shreds. Simply said, Duchenne strips life bare and focuses our responsibilities to one another. I say this because when you see your son lying motionless in bed, unable to do practically anything on his own, other than speak, its real. When you watch him with others more able and see him smile and laugh, listen and support, and brighten and encourage, it’s incredible. When you hold his hand as he falls asleep or wipe his tears when he’s scared, its human.

It’s why I share our Duchenne journey. It’s why I share Alex’s story. I do for the life lessons it provides.

Alex lives with the monster Duchenne, through no fault of his own. The disease robs him of a life most of us enjoy and sometimes take for granted. He cannot walk. He cannot run. He cannot stand. He either lays in bed or sits in a wheelchair. Sadly, he has forgotten the feel of ground beneath his feet. His legs beg to move, but can’t. His arms strain to lift, but don’t. Some days, his lungs scream to breathe freely, but cannot. He requires assistance to eat, drink, breathe, dress, groom, toilet, blanket, blow, scratch, stretch, retrieve, transport, write, type, and vote, to name a few. His wave is nearly imperceptible and often overlooked though he desperately wants your attention. His voice is often unheard though he desperately wants to share his thoughts. With Duchenne, Alex’s restrictions will only increase with time.

It’s rather incomprehensible, frankly.

So, how does he do it? How does a young man living with Duchenne, on the cusp of adulthood, approach each day without fear? Without anger? Without resentment of others more fortunate? How does he handle watching his friends continue on their life paths that diverge farther from his every day?

The answer is surprisingly simple. We should all take note.

Alex lives as best he can.

He smiles as often as he can.

He laughs as much as he can.

He loves as strong as he can.

He helps others to do the same.

I cannot emphasize this enough, especially the last one. The kid is wise beyond his years.

Alex’s life perspective was on full display this past week when he received a bisphosphonate infusion to strengthen his bones at Cincinnati Children’s Hospital. The infusion pulls calcium from his blood and transfers it to his bones, which have become ravaged with osteoporosis from nearly 15 years of steroid use. Over time, Alex’s osteoporosis has led to spinal compression fractures in all but three of his vertebrae. It has lessened his bone density body wide to a point where a fracture is but a awkward twist or unfortunate snap away. It has rendered him unable to sit up straight because of severe pain. It resigns him to a prone life more than desired. Hopefully, the infusion will help reverse this current trend. Hopefully, the infusion will return strength to his body. He will continue this treatment every six months.

The first infusion began early Monday morning this past week.

Immediately upon arrival to the hospital, a slightly nervous Alex sought his friend Herb in lab testing registration, even though our destination was still seven floors above. You see, Herb is a familiar face for Alex and a calming presence. The two have been friends for many years now, dating back to our early Duchenne years beginning at age three. Through the years, they have shared smiles and stories while I fill out administrative paperwork. They never fail to make one another smile and Alex often seeks him out whether or not our visit involves lab testing. Herb is a solid, strong, middle-aged African-American man with a kind heart and a beaming genuine smile. He takes keen interest in Alex’s life and likewise Alex does his. Their relationship is beautiful to witness as they laugh, joke, and catch up. They ALWAYS end each visit with a fist bump.

Guaranteed.

After visiting with Herb, we proceeded to the Building A elevators. Alex led the way and rolled slower than usual from his nerves. I trailed with an overnight bag in one hand and his hoist pulled awkwardly in tow from the other. We passed several security guards who visually scanned us as Alex nodded his standard “Sup, man?” to each one until they acknowledged his presence. He then added multiple “Have a nice day’s!” until they smiled in return and wished him the same. He clenched his hand for hopeful fist bumps, but they unfortunately went unnoticed.

On the elevator, Alex made room for a young man about the same age as Alex and then asked if he was a doctor. The young man smiled sheepishly and replied he was only a hospital volunteer in cardiology, but hoped to be a doctor someday. Alex encouraged him and wished him well as the young man engaged Alex’s fist bump before departing a floor below our destination. You could see the hopeful volunteer smiling with pride as he walked away and then turned to wave as he continued his day with a bounce in his step. I couldn’t help but notice the irony of the brief exchange between the young men.

We arrived to the 7th floor and made our way to our home-away-from-home for the next thirty or so hours. We laughed as we checked out the room’s vast amenities, including a brick wall for an exterior window view, sterile smells of cotton and sanitizer, and a TV preset to hospital safety videos! I cranked and hoisted Alex out of his wheelchair and into his bed, set up his ventilator, and then unpacked our belongings before we welcomed the steady stream of administrators, nurses, phlebotomists, technicians, residents, and doctors that filled our day and Alex’s bedside. Many times, they would linger and share a laugh with Alex before moving onto the next patient. Throughout it all, Alex chatted with each person as if they were old friends.

The infusion itself was simple, once they found a good vein. The procedure took approximately an hour and a half, but then required an overnight stay to check for potential side effects such as nausea, headaches, hives, painful joints, swelling, etc. Alex and I were not thrilled, but made the most of it. They told us to consider it like a vacation. They enthusiastically promoted the comfortable incline bed, told us to order from the healthy room-service menu, and then pointed to the wall-mounted TV. Seeing all this, who wouldn’t feel like they were on vacation? We politely nodded until they left and then joked about our good fortune at such a resort facility. To pass the time, we talked about anything and everything and then watched a couple of movies and a lifetime’s worth of Cartoon Network! Our night was capped by a welcome and recharging phone call from home.

Throughout the day and night, Alex seized every opportunity to chat with hospital staff. He encouraged one shy nurse to talk about her newborn who she missed dearly. He complimented every hairstyle and beard or mustache that entered our room from doctor to room service attendant. He wanted the window blinds left open so he could catch the eye of anyone who would walk by and peer in our room. We eventually agreed that sleep would make our departure come quickly, so we called it a night. We both fell fast asleep as the day had been surprisingly exhausting. Throughout the night, I awoke often and then smiled in amazement (as I lay on the oh-so-comfortable fold-out vinyl chair-bed with a bar that undercut the middle of my back) while listening to friendly conversations between Alex and nurses who checked on him every half an hour.

Late the next morning, after breakfast and after a doctor looked at Alex’s bloodwork results, Alex was officially discharged. Not unexpectedly, Alex thanked the doctor and told him he liked his beard and mustache. The doctor blushed slightly, stroked his chin, and smiled with pride.

“Why, thank you, young man! That’s very kind of you to say.”

“Someday, I hope to have a mustache!” Alex added truthfully.

“Keep at it,” the doctor encouraged Alex's minimal growth and then continued proudly. “I’ve been working on this one for about a month now!”

The two talked facial hair growth for a little while before Alex then clenched a fist and nodded towards it. The doctor recognized the request and stepped forward to lightly connect the bump before departing.

Then, as I packed our bag to leave, Alex’s morning nurse came in and removed Alex’s IV from his arm. Naturally, Alex told her she looked pretty. A nice compliment from a kind young man, I’m sure she thought as she held a gauze pad to the wound and stretched a colorful Band-Aid across his arm. Perhaps she was flattered. Perhaps she had heard it before. Nonetheless, she seemed happy for the compliment and smiled. Again, I admired Alex ability to make anyone’s day.

But then…Alex revealed he still had much to learn when he added (innocently)…

”You probably don’t hear that too much, do you?”

An awkward silence filled the room. I knew he was trying to score points for his chivalry, but I froze nonetheless and hovered over our bag. I glanced sideways to the young woman.

She hesitated, surely contemplating her reply, and then acknowledged the compliment as she replied professionally.

“Well, no…not that much. But, thank you.” She then exited the room with a bit of a chuckle, a kind wave, and well-wishes for a good week.

With my tongue set firmly in my cheek, I continued packing our bag. I nodded recognition that life and how to live is a constant learning process…for everyone. No exceptions. Although Alex has taught ME a lot about how to live fully, smile in the face challenges, and laugh as often as possible, this was his time to learn. Because everyone needs guidance now and then. We all do, and we’re here for one another.

I took a deep breath, understanding my responsibility to help him.

I began.

“Dude….”

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THE HONGI

9/19/2018

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Our family has a new favorite actor. His name is Manu Bennett, more popularly known as Deathstroke in the TV series Arrow, Azog in the movie The Hobbit, or Crixus in the TV series Spartacus. Still don’t know him? No worries. I didn’t either until last weekend at the Cincinnati Comic Expo. But from this day forward, I’ll never forget him.

For those unaware, Manu is a strong, chiseled, and deep-voiced actor typically cast as a tough guy - villain or hero. On film, he fights hard and usually wins. In press, he’s often found gracing covers of fitness and health magazines. In person, he is a tan-skinned New Zealander with dark flowing locks, a warm, beaming smile, and an incredibly caring heart.

The world needs more Manu’s. Let me explain.

The Cincinnati Comic Expo is one of Alex’s favorite days of the year. Each year, he circles the date on his calendar months in advance and counts the days until its arrival. He does not for the comic books, the graphic artwork, or the elaborate costumes, but for the plethora of actors willing to exchange an autograph, selfie, or both for cash. It’s a racket, if you ask me, with starstruck fans shelling out hundreds of dollars for the chance to meet celebrity. Not my usual cup of tea, but Alex LOVES this event, and we attend every year.

Our day started this year upon Alex’s waking and his excitement for the day. He couldn’t stop talking about the Comic Expo, and hurried me along to get him ready. He patiently waited in bed while I fed and then dressed him for the big day. Although he genuinely worried whether his deteriorating back would last, he eagerly brainstormed which movies to bring for the various actors to sign. Wait a minute, I thought! Who said anything about autographs? Ignoring my non-verbal warnings, Alex pressed.

“Yeah, Dad. Autographs!”

For whatever reason - perhaps his level of excitement or his challenging year of back pain - I relented. It had been a tough summer for Alex. I reconsidered and thought what the heck.

“Okay, but only one,” I surprisingly succumbed to his excitement.

“Yes!” he immediately replied with achievement, then pushed his luck. “Can I get two?”

I shook my head with resolve. “No. One.”

Alex frowned disappointment and pressed further. “Awwww, come on, Dad! You KNOW I love to meet people!”

I smiled and nodded agreement. “I know you do. We think that’s awesome. You can meet all the people you want! But…only ONE autograph, okay?”

Alex looked away to the window trying to think of another route of persuasion.

“ONE!” I preempted when he opened his mouth. I then revealed how I really felt. “Besides, they’re just scribbles on paper anyway.”

Alex grumbled his shock and disagreement. I silently worried if I had squelched his enthusiasm. I guess I was already in a sour mood. You see, he and I have different perspectives of the Cincinnati Comic Expo.

To Alex, the Cincinnati Comic Expo is a superhero-packed, fan-filled event that is alive and awesome! It gets him out of bed and out of the house. It allows him to spend time with people other than Mom or Dad. It connects him with the world and especially his heroes, favorite celebrities, and complete-strangers-turned-best-friends…seriously. The day helps him to forget about his limitations with Duchenne Muscular Dystrophy. It helps him to forget about his back pain. It puts an everlasting smile on his face.

To me, the Cincinnati Comic Expo, while entertaining, is challenging and exhausting from start to finish. The day is physically taxing, emotionally tiring, and oftentimes downright frustrating. I sigh thinking of the effort involved for simply getting Alex dressed in costume, out of bed, and out the door. I cringe with annoyance thinking about locating accessible parking, navigating through oblivious crowds, or any other inconvenience in the world of immobility. I say this because where before I could dress Alex easily, now requires a nearly continuous and complex series of pulls, lifts, pushes, and turns of a body larger than mine. Throw in Alex’s desired one-piece superhero costume, and I quickly break out in a sweat while dressing him. This is followed by hoisting, positioning his heavy body to a place of seemingly disappearing comfort, and then grooming him to be ready for the day and challenges that await. After more than an hour, we then have the joy of looking forward to parking, crowds, and other challenges at the Expo.

Sigh. Bad attitude, I know. But, please keep reading.

Upon arrival to the downtown venue, we found a nearby parking garage and predictably drove to the highest level because the spattering of handicapped parking spots were already full. We maneuvered Alex’s wheelchair out of the van and onto the parking stripes partially covered by the wonderful parking job of the adjacent car. We encountered a rickety elevator too small to enter that forced us to traverse five levels of ramping while continually cautioning cars from hitting us (note: we found a more accessible parking garage AND a working elevator on Day 2 of the Expo…thank you, 84̊ 51ꞌ Building!). Upon safely reaching ground level, we navigated our way to the Expo entrance only to find stairs and yet another long detour for wheelchairs.

Inside, we found thousands of people more concerned with finding that rare comic book, unique t-shirt, or collector’s pin rather than allowing a young man in a wheelchair the chance to simply drive. We politely and continually redirected those who failed to simply look down to avoid collision. We saw costumed fans enjoying hot dogs, pizza, popcorn, and fun drinks, while we patiently worked to feed Alex a bite and then wipe his lips after every one. After being told straws were no longer provided at the event for environmental reasons, I tilted a water bottle to his mouth and tried not to pour it down his face, but did anyway. We ignored the frequent stares of those unfamiliar with a young man in a wheelchair with portable sip ventilation.

Sigh. Such is life with Duchenne. As much as you learn to deal with it, it’s still frustrating at times.

Then, after fighting the crowds, we made our way to celebrity row. There, an abundance of celebrities sit behind tall tables that are positioned in front of black curtains with elaborate posters featuring the actor’s name and photograph. In front of the tables, signs post the actor’s window of availability as well as cost for an autographs, selfies, or both. Highway robbery, if you ask me. Besides, they’re basically all the same, right?

Was I ever wrong.

Alex had selected Manu Bennett for his ONE autograph. I had no idea who Manu was but just smiled my support of Alex’s dream to meet a celebrity. As Alex led us to the line for Manu, I could see the crowd ahead and my frustrations soon began to mount their offensive. The line was long, about fifty people deep and snaking through several switchbacks taped on the floor. Simple for most navigators, but awkward for wheelchairs. I subtly shook my head at the situation and sighed.

We then waited.

And waited.

And waited.

It had been over an hour already and it seemed the line was not moving as fast as it should. Although we met many interesting people, I wondered What could be taking so long? Was it really worth it? Someone ahead then relayed that a few dealers had brought a boatload of items for Manu to sign and certify, which extended our wait time. I noticed a sign posted that Manu would only be available for another 20 minutes. I counted the number of fans before us and calculated our chances. My frustrations mounted on top of the ones I already had brought with me that day.

Are you kidding me? I thought. We wait all this time and then NOT get an autograph!?

“Dad, we’ll get one. Just be patient.”

I looked to Alex. “Sorry, did I say that aloud?”

“Yes!” Alex shook his head in mild embarrassment, and then sipped his ventilation.

I settled myself and focused on Alex’s genuine excitement. I still could not see the value of the autograph, but a deal’s a deal. Be patient. This was for Alex, I told myself.

Soon, our position in the line had approached the celebrity table. And, go figure, Manu’s handlers announced he would be leaving for a photo shoot and be back in an hour. I swiveled in frustration before one handler noticed Alex and said, “but...after this young man!” I sheepishly smiled our thanks and swallowed my impatience. I then opened my wallet, voiced apology, and paid the requisite fee, silently protesting the charge as ridiculous. Alex asked me to get his empty Arrow DVD case for Manu to sign. I did, and then handed the case to Manu.

“Ahhh, you’re an Arrow fan, I see!” Manu exclaimed in his rich New Zealander accent.

Alex beamed that a celebrity actually talked to him. I waited politely.

Manu signed the movie and then, after some chit-chat, reached for a picture of his character Deathstroke (Alex told him he loved Deathstroke). He signed the picture as well, while I whispered to the handler we only wanted ONE autograph. The handler shook his head and dismissed my cost concerns. After some more chit-chat between fan and actor, Manu stood up, walked around from behind the table, and asked Alex if he wanted a selfie, too.

I immediately looked to the handler who had anticipated my concern and dismissed it a second time. Relax, man, he expressed with just a glance.

I turned back to Manu and Alex, who were talking and lost in their own world.

And there, they struck me.

Before me was one of the most beautiful, personal, exchanges I had ever witnessed. Manu had squatted to wheelchair level, ignoring all eyes upon him. He reached out and then gripped Alex’s hand like they were blood brothers. He held it tight while they talked. Manu listened as Alex shared his life with him. Alex told him about being adopted from Romania. He shared how he lives with Duchenne. Manu smiled, nodded respectively, and leaned close. He told Alex to stay strong, be brave, and keep being the awesome young man he could tell that he was. While tears formed in my eyes watching this exchange, Manu and Alex posed for a selfie taken by the handler. Alex’s joy was beautiful. I was so happy he could meet one of his heroes.

They were not done.

Manu then turned again to Alex and explained what he was about to do. He told Alex they were going to touch noses and then foreheads, close their eyes, and breathe deeply together, intimately sharing the air they breathe.

“This is called a Hongi,” Manu explained quietly. “It is native to my homeland of New Zealand and is shared amongst friends to exchange the breath of life and the sharing of souls.” He waited until Alex understood, and then asked. “Are you ready?”

Alex nodded.

Manu and Alex then touched noses and slowly joined foreheads. They closed their eyes and breathed deeply, Manu’s breaths clearly stronger and Alex following Manu’s lead as best he could. Manu then whispered, “Use my breath to give you strength, as yours will do the same for me.”

Alex and Manu continued breathing like this for nearly a minute. I wish I had the nerve to take a picture, but I was too struck by awe and respect to do so. Those in line behind watched silently as well. It was truly magical.

When Alex and Manu finally parted though still holding hands, you could see the shared experience had affected them both. They held eye contact for an extended period. I stood by with an everlasting smile. What crowds? What frustrations? What Duchenne?

THIS was incredible.

THIS was back pain taking a back seat and frustrations melting away.

THIS was a reminder of our shared humanity, no matter how famous or able or seemingly overwhelmed.

THIS was life as intended. Shared. Beautiful. Giving.

Manu eventually stood, smiled, and then quietly disappeared behind black curtains to his scheduled photo shoot.

Alex and I sat stunned for a moment trying to comprehend what just happened. We looked to each other, smiled in amazement, and then pivoted to roll away. Alex held his smile and forgot about his back pain. I held my smile and walked with renewed energy to meet anything the Cincinnati Comic Expo had to offer.

As we approached another table, Alex asked, “Can I get another autograph from someone else?”

I chuckled at his renewed attempt and then shook my head.

“No, one is enough.”

One was more than enough.

Note: On Day 2 of the Expo, Alex rolled by Manu’s table again, hoping to chat. The line was long and we debated if we should wait. His handler noticed us and pulled us to the front of the line. There, a second time, Manu stopped what he was doing and came out to talk with Alex. Their conversation concluded with another Hongi as if they were friends for life.

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ONE POINT

7/20/2018

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Imagine, if you will, a 4-foot 10-inch tall young man tipping the scales just north of eighty pounds. Envision his white jersey top gaping over his scrawny build with silky blue shorts draped mid-thigh above knee-high tube socks. Close your eyes and picture him sprinting down court proudly representing his 7th-Grade basketball team. Everything he had planned was certain to come true. Everything he had hoped for had fallen into place just as predicted. THIS was his time to shine. THIS would be the defining moment propelling him to basketball greatness. He could feel it. He could sense it. He could see the highlight reel rolling in his head as he led the game’s first fast break following tipoff. Nothing would stop him. The stars had been aligned.

Or so he thought.

Moments before, the basketball had fallen into his hands as undoubtedly foretold by a popular 1975 book titled Biorhythms. For those unfamiliar, the then best-seller provided research, charts, and graphs, as well as dates and times for when our lives would be at their peaks or valleys. All we had to do, the book contended, was recognize our rhythm, align it with the books graphs and charts, and watch the unfolding of our certain success.

The young man had studied the book diligently. He charted his rhythms, his ebbs and flows. He reviewed his team schedule and circled the date when his marginal talents would certainly intersect with guaranteed greatness. The perennial bench-warmer then convinced Coach Bailey to give him a shot at starting because it would be the night-of-all-nights in junior high school basketball history. The young man ignored that the normal 7th-Grade starters (who were quite good) had previously beaten the same opponent by over 50 points a couple weeks prior. He failed to hear Coach Bailey explain how he wanted to allow others a chance to start a game given the right opportunity. Regardless, the young man counted the minutes until tipoff. This would be his night!

After teams introductions with spotty loudspeaker and crowd fanfare, the team huddled and put their hands together waiting for inspirational words from Coach Bailey. They soon broke with a cheer and the young man trotted confidently towards midcourt ready to claim his spot. He jockeyed for pre-tip positioning alongside his taller teammates and opponents. He took a deep but excited breath, and then waved discreetly to his Mom sitting in the bleachers. He then awkwardly held his hands high in advance of tipoff. This was his moment, he was sure. Biorhythms had predicted his success. He silently willed the referee to start the game and toss the basketball skyward.

As if meant, the basketball tipped his direction and fell into his open arms. He buzzed with excitement as he cradled the ball, bent over in protection, and then shook off any others fighting for the opening tip. A moment later, remembering his certain destiny, he turned and dribbled down the court, starting the game’s first fast break.

I often recall this moment when Duchenne overwhelms me as Alex’s caregiver. Like basketball, there are days when I’m on top of my game, handling anything the beast cares to dish out. On those days, I feel superhuman, like I’m leading the fast break. I feel like I can make any shot from anywhere on the court. I feel like NOTHING about this disease could bring me down. I help Alex with strength and determination. I instill in him confidence and normality. I help him to push beyond any emotional or physical pain and despair that threatens his day. On those days, cleaning and grooming Alex is an honor and feeding him is a blessing. Tears that threaten or fall from his eyes are wiped and absorbed with love and reassurance that everything will be okay. Creativity flows from my brain with ways to entertain and encourage, or simply listen and support. I feel like THIS is where I am meant to be. THIS is my calling, my duty, and my honor. On those days, nothing can stop me. The game is my control.

But, like life in general, caregiving for Duchenne does not always happen the way you plan. Sometimes, the tough days smack you without warning, triggered by the slightest of events like a spilled drink, a broken wheelchair, or a 3AM poop. For me, sometimes it’s seeing a father and son playing catch, a kid riding a bike, or your son’s friends living the life you thought he’d lead. Sometimes, it’s your lack of sleep, strained back, or shortened temper that tips the scale. Sometimes, it’s the silliest or stupidest of things that seem so significant at the time and then snowball for no reason other than fatigue or spite. On those days, I don’t like myself.

And then…you see a burning candle post on Facebook.

If you’ve seen them, you know what I mean. In our Duchenne community, they show yet another young man who has lost his battle well before his prime. For whatever reason, these posts seem to be happening more and more frequently this summer. They’re disheartening. They’re sobering. Sometimes, they leave you with the smack of reality and a realignment of attitude. Other times, they leave you feeling vulnerable to the horrors of this disease. The candles make you question your ability to make a difference in the losing battle. You feel helpless and sometimes alone.

You read of beautiful lives taken too soon, some as young as 13 years old. You learn of Christopher, Devin, Brayden, and Matthew. You smile at the shared memories of Tristen, Kelton, Justin, and Joshua. You shake your head at the passing of Keith, Keshav, Ross, and Dallas. You whisper a comforting prayer for young men like Ben, who is currently surrounded by family in hospice. You sigh because such young men square you to the realities of Duchenne. They remind you a cure has yet to be found. They remind you our time together is short and limited. Such thought can leave you paralyzed with sadness and despair.

But each passing also brings pause to what really matters in life, and how we should all live. Each passing pulls me back from the frustrations of the daily grind. Each passing reminds me to let go of the moodiness, the pettiness, the selfishness. Each passing reminds me to LIVE the life we have with one another, while we have it!

This cannot be more clear.

Most recently, it was the passing of 16-year old boy named Danny that realigned me. Like many young men with Duchenne, Danny lived life to the fullest. He smiled often and wide. He was well-liked and loved by many. He was a passionate Rutgers sports fan. He had a bucket list that included items like watching a sunset, flying a kite, and participating in a water balloon fight, to name a few. He hoped to make snow cones, play mini-golf, and wash the car. He wanted to go fishing, find a four-leaf clover, and to go through a Sonic drive-thru for his favorite order of tater tots and a Diet Coke. Simple requests. Some left unfulfilled. All with intention of simply enjoying life.

Danny’s candle reminded me of life’s preciousness we too often forget. It reminded me to push through life’s rough spots and cherish our time together. It reminded me to take a deep breath, to enjoy the moment, and to laugh and love. It reminded me to live as Danny’s family asked.

#makeeverydaycount

It’s frustrating that it takes a burning candle and a hashtag to remind me of life’s importance. It bothers me the daily grind sometimes overshadows the blessing lying before me – smiling, laughing, and looking to me for direction, inspiration, and hope. It frustrates me I become wrapped up in the world of Duchenne, sometimes seeing only the negative when the positive is but a smile away. Life is not always what you expect. It isn’t planned, settled, or predetermined. It’s certainly not led by published biorhythms. Our lives, and our abilities to live to our fullest, are up to US…all of us…together. We can make it incredible if we try, even in the toughest of times, or we can’t.

It’s that simple.

A couple months ago, Alex hurt his back the night before his senior honors assembly. The pain was so severe that Alex could not move more than a wiggle, and he was confined to bed for more than a month. He realized his misfortune would cause him to miss the honors assembly as well as his high school graduation a few days later. He was heartbroken because he so desperately wanted to be with his friends and share in the experiences. He so desperately wanted to be like everyone else, a kid celebrating life’s achievements. As parents, we felt helpless that he would miss one of life’s grand passages in high school graduation – yet another life milestone stolen by Duchenne.

My frustration with this damn disease was near an all-time high.

Then, some in our community learned of his situation. Within a matter of hours, friends, neighbors, teachers from Alex’s Preschool to Senior Year, the High School Principal, an Assistant Principal, and even members of West Clermont High School’s marching band learned of Alex’s condition and rallied together to bring graduation to him! To our house! In his bedroom! Once assembled on our driveway, the marching band started playing the school fight song and led the procession through our back door, into our house, and upstairs to Alex’s bedroom! His smile of surprise, joy, and appreciation was priceless!

The band played the graduation hymn as Principal Gebhardt presented Alex with his academic and achievement awards. His friends offered their support and fist bumps of strength and encouragement. Teachers recounted stories of their days teaching Alex and his friends. It was a beautiful afternoon! Principal Gebhardt then came back a week later (in full graduation cap and gown) to present Alex with his official diploma. A couple days later, Alex was on the evening news sharing the incredible story and what it meant to him.

The energy that afternoon was incredible! Smiles in that room were abundant! Not just for Alex, but for seeing the joy our community created. It’s beautiful what can happen when we come together for one another. It’s amazing to think of our potentials. We cannot do life alone.

I wish I would have learned this lesson long ago when I raced downcourt towards the 7th-Grade basketball game’s certain first points. I wish I would have understood that launching a premature, one-handed, layup from the foul line a la Julius Irving-style did not provide a strong foundation from which to build my basketball career. I wish I would have known to look for the open man and pass the ball. I wish I would have known that biorhythms foretold in a best-selling paperback were no match for teamwork and togetherness.

Then again, when the basketball clanged hard off the backboard and awkwardly off the rim, I should have known it would be a long day. I should have known the game would be a grind, as is life. I should have known the game, and life, never goes as planned. I should have known the best we can hope for is fortitude to push through the difficult days (and nights)…with family, friends, and community to lighten the load along the way.

I should have known.

On that day back in 1976, during that first and only ever start in my esteemed basketball career, I scored one point.

It may have been the most meaningful point of my life.

(huh, come to think of it…perhaps the biorhythms were right after all)

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WAITING, PANCAKES, AND BACK IN THE DAY

4/17/2018

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Back in the day, a teenage boy waited on the corner of Cassingham and Elm. The sun had already slipped below the surrounding residential horizon, and the skies had already changed to shades of gray and some black. In the distance, stadium lights pushed skyward and reflected off low clouds hovering over the small community that had gathered for a Friday night high school football game. Pregame sounds from marching bands, announcers on loudspeakers, and enthusiastic cheerleaders filled the air and carried to the street corner where the boy patiently waited for a girl he had asked to the game.

What if she doesn’t show up? His mind raced with worry. What if I say all the wrong things? He practiced lines he had rehearsed in his head. He repeatedly scanned the sidewalks for the girl’s arrival. He took many deep breaths to calm himself. The wait was agonizing, yet hopeful.

Soon, the distant cheers grew louder and he realized the football game had started. Am I at the wrong corner? He wondered. Did she have a change of plans, or a change of heart? He paced about in small circles, nervously wiping his sweaty palms across his pants, while the streetlight above lazily changed from green to yellow to red, and then quietly back to green. Each minute felt like hours. Each light change reminded him of his solitude. Each distant cheer added to his isolation.

They weren’t a couple, by any means. Far from it. Although he had a crush on her since the Fourth grade, the game would be their first date. He wondered if he should hold her hand when they walked to the stadium. He fumbled through his pockets to make sure he had enough money to buy her a Coke at the game.

Before long, he heard the marching band begin its halftime performance, and the boy realized their meeting would probably not happen like he had hoped. It was getting late. He realized the girl, for whatever reason, would not be meeting him at the corner. Perhaps she thought we were to meet at the game, he thought. He sighed with resignation, and then made his way to the stadium alone, yet still hopeful.

The boy entered the loud stadium and walked towards a group of friends and other restless teenagers gathered along a low fence line surrounding the end zone. Where have you been? His friends shouted. The game is almost over, they laughed. Then, they pointed.

The boy followed their direction and saw the girl. She stood smiling and laughing, seemingly lost in conversation with another boy as if they were an established couple.

The boy’s heart broke.

I share this story with Alex, every now and then, to help him understand life's disappointments, especially when it comes to girls. I tell him it happens to everyone. I tell him you gotta roll with the punches and keep moving forward no matter how hard it can be. I tell him disappointment is not a reflection on him, it’s just the way things happen sometimes. I tell him that someday he’ll find the one. It just takes time. He’ll shrug and nod understanding. He’ll smile and try his best to move on. But, you feel his pain. You feel his loneliness. You also feel his frustrations of living with Duchenne.

I share this story because he had garnered the nerve one day to ask a girl to visit him at home and play some video games. She agreed, and they set a date a couple weeks in advance. As you can imagine, Alex counted the days to until her arrival. He planned out what video games they would play or movies they would possibly watch. He told me what shirt he wanted to wear.

The day of the meeting, he asked me to dress and groom him, and get him ready. He asked me to hoist him into his wheelchair hours earlier than needed just in case of her early arrival. He made his way downstairs and rolled around the house waiting for the visit to begin. He stared out the windows and, more than once, swore he saw her car driving up the street. After a while, weaves of wheelchair pacing had grooved into the carpets and the planned meeting time had long since passed. Still, he waited…hopeful.

A couple hours later, the young woman texted that she couldn’t make it, and apologized for not coming to see him. He had been all dressed up and ready to go. He debated if he should go back upstairs alone. Seeing his disappointment, I took him to the movies and then IHOP for some late-night pancakes.

There, Alex shared his heart. “I wonder if I’ll ever have a girlfriend. I mean…I can’t walk, YOU have to drive me everywhere, and YOU have to feed me every bite when I eat. I can’t do anything by myself! I can’t go anywhere by myself! If someone ever dates me, they date you, too!” He looked away, as if searching for something, anything to prove he was a teenager like anyone else.

He turned back to me and opened his mouth for another bite of pancakes. I obliged, and then wiped syrup from his lips.

As any parent, you give support as best you can. You tell him not to worry. You tell him it’s not just him. You tell him everyone goes through tough times and that many experience disappointment or heartbreak. But, as a Duchenne parent, these moments tear you apart. Sure, teen angst is common throughout anyone’s adolescence. Sure, we’ve all been there. But, with Duchenne, you hear him. You feel him. You know what he is thinking. He wants to be like everyone else, in a world where the odds of having Duchenne are roughly 1 in 3500. Despite your words of understanding and comfort, his frustrations of immobility and complete dependence for everything are real. You understand and let him know that you do.

And, it’s not just with girls. Feelings of social isolation happen with his guy friends, as well.

For example, Alex recently invited six young men to join him for a movie and a sleepover to celebrate his 19th birthday. He had hopes of laughter, pizza, hoots and hollers late into the night, if not morning. He imagined company and conversations with people other than Mom and Dad for a change. Nights with friends make him feel a part of it all. He joked that he hoped his friends wouldn’t cancel like the girl he had invited a couple of weeks before.

Then, unfortunately, they did. One by one.

Days leading up to the party, two friends canceled because of conflicting Spring vacation plans. The night before the party, another canceled because of work commitments. Then, while grooving his wheelchair in circles and waiting downstairs for the remaining guests to arrive, two more canceled for last-minute college or family obligations. The sixth, and last, invitee then texted that he couldn’t make it because he didn’t have a car and couldn’t get a ride.

Alex looked at me and simply shook his head. “I’m cursed,” he said.

Just like that…birthday plans with six friends…dashed and nearly destroyed. We had to do something. We called the sixth friend and told him we would pick him up so Alex would have at least one friend at the movies with him other than Dad. After the movie (Ready Player One), we picked up another friend after his work shift had ended. Determined to enjoy his party, Alex and his two friends stayed up most of the night celebrating another year.

Sigh. Crisis averted.

What many may not realize is the magnitude of visits to a kid with Duchenne. Any visit, anytime, anywhere, is treasured. Any visit, anytime, anywhere, is revered. If a visit is possible, our family makes time for it to happen. We do because, with Duchenne, as your son’s world shrinks, his friends’ lives grow exponentially. As he becomes increasingly dependent for everything, his friends become increasingly independent and launch into active lives. You can’t blame them. In fact, you cheer for them, because they have become like family over the years and their success is encouraged! Still, for the kid with Duchenne, the separation in young adulthoods becomes too swift. It happens too fast. The gap, sadly, grows wider…and expands every day.

Family can fill the gap, and kind neighbors as well, but it’s just not the same as friends. We wish we could do more.

So, as you can tell, we are entering a transitional period in Alex’s life. As he approaches high school graduation, many of his friends are moving on to their next adventure. Some are heading to college. Some are beginning new jobs. Either way, they are moving onward as well they should.

But, unfortunately for Alex, the friend-market is thinning and will undoubtedly become more so in the coming years. He may meet new friends when he is out and about, but that will become harder and harder as his Duchenne advances and he spends most of his time at home with Mom and Dad. He’ll also chuckle and shake his head as our aging heads inevitably tilt back asleep while watching a movie with him. When that happens, he sometimes calls friends and family in other states to stay connected at any hour of the night.

God love him.

It’s times like these that tap your heart and encourage you to continually tap his. Despite his restrictions with Duchenne, you encourage him that what matters most is his spirit for life and his belief in himself. You tell him that you love him and always will. You encourage that what matters is happiness and love for one another. You pump him with self-confidence to face the difficult days, because you know there will be many. You do everything you can to keep his chin up, despite his declining physical abilities. You laugh with him as you watch his favorite sit-com or YouTube video. You take him to a park or a bookstore or a Reds game and hope for a win. You do anything of the sort because you want to give him the best life he can have. You do because YOU see the gift he brings to the world, and you hope others see it as well.

You do because he needs the connection,

…and deserves as much.

Over the pancakes at IHOP, I shared my story again with him about the boy waiting at the corner. I told him that although the girl did not meet him at the corner, she is a good friend to this day. I reinforced that although friends may come and go, good friends will always be there for him in the years to come.

He smiles, shakes his head, and says…

”Thanks, Dad. But, do you realize how many times you've told me that story!”

Update: The young woman who had to cancel her visit the day of the IHOP pancakes is upstairs at this very moment as I write…laughing with Alex and playing Madden 2018. They are good friends, and the laughter coming from his room couldn’t make me happier. You go, Alex!

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THE KEY

1/26/2018

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For the past 17 years, I have held our son Alex’s hand every night as he falls asleep. It’s a special time between father and son as we lie on our backs and talk to the ceiling. We talk about life, girls, video games, and anything weighing heavy on his teenaged mind. I listen and offer guidance where I can as Alex opens his heart and bares his soul. Over the past several years, our most poignant discussions have centered on one question about life with Duchenne Muscular Dystrophy.

“Why?”

This is not an easy question to answer as Duchenne is cruelly progressive and terminal. His question is heartfelt, personal, and truth-seeking. It expects attention, understanding, and honesty. The question is also universal as it relates to human suffering.

I've tried to capture the essence of this question and our discussions in The Key. From Jerusalem to Milan, the foothills of the Italian Alps to Bellagio and Lake Como, The Key propels readers on a desperate search for truth about Jerusalem's destruction and human suffering. The Key challenges readers to question God's Plan, our responsibilities to one another, and the future of humanity through the eyes of a man seeking revenge and another living with Duchenne Muscular Dystrophy.

I hope you enjoy it!

-----------------

THE KEY

“Thrilling!” “Action-Packed!” “Thought-Provoking!”
“A Remarkable Story!”

From Jerusalem to Milan, the foothills of the Italian Alps to Lake Como and Bellagio, The Key propels readers on a desperate search for truth about Jerusalem’s destruction and the problem of human suffering. A sequel to The Cave, David Click’s debut novel, The Key challenges readers to question God’s Plan, our responsibilities to one another, and the future of humanity through the eyes of a man seeking revenge and another living with Duchenne Muscular Dystrophy.

“Perhaps the reason for suffering is much deeper than faith and a plan. Perhaps suffering is more than lightness and darkness, or blessing and sacrifice. Perhaps the reason for suffering can be found inward instead of outward.” - Excerpt from The Key

Anticipated release: February 2018 (Adger Publishing, LLC)

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NEXT THURSDAY CAN WAIT

11/23/2017

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Duchenne Muscular Dystrophy is a most unwelcome beast. Without invitation, it steals your son one muscle fiber at a time, laying claim to his legs, arms, and torso for starters, then moving on to his lungs and heart without care. It attacks his ability to simply breathe, eat, or control his body in manners most of us take for granted. It holds complete and total disregard for his hopes, dreams, or fears, as well as your own. It relentlessly claims new territory as it camps, spreads, and seeps into every aspect of your life, every day and every night.

Most unwelcome indeed.

As it will be next Thursday, one week after Thanksgiving, when we visit Cincinnati Children’s Hospital to discuss Alex’s latest round of testing and evaluations performed last week. Next Thursday will be a long day of waiting and listening in a windowless clinic room where limits of patience, hunger, and emotions are tested. It will be a day filled with administrators, technicians, nurses, and doctors specializing in pulmonology, cardiology, neurology, and endocrinology. Throw in dietitians, physical therapists, social workers, and palliative care specialists, and the day will be like a large family gathering of revolving doors, serious talks, and some tears. We’ll sit and take it while doctors share Alex’s steady decline in nearly every measurable category related to this incurable disease. We’ll sigh deeply, hold hands, and wish it was all a dream.

But, it’s not.

It’s life with Duchenne.

Next Thursday, we’ll see old friends we have known for years like Kenny-Benny in cardiology check-in who always shares smiles and laughter with Alex. We’ll see Dr. Wong in neurology, as well as her assistant Andrea, who have been with Alex since he was 3 years old. We’ll see Drs. Rutter, McCormick, and Garbani, and many others at our home-away-from-home located at 3333 Burnet Avenue.

We'll hear reminders of Duchenne’s unstoppable progression. We’ll listen to Dr. Sawnani, Alex’s pulmonologist and all-time favorite doctor, describe Alex’s declining lung function with heartfelt (though sometimes difficult) honesty. We’ll listen to Dr. Ryan, the cardiologist who works to protect Alex’s strongest muscle of all. We’ll listen as Alex shares his hopes and dreams with Dr. Widener, his palliative care doctor who is tasked to help Alex live as comfortably as possible as life gets tough. All said and done, it’s a long and exhausting day, one that usually leaves our heads full and our hearts heavy.

But, next Thursday is just that. It’s NOT today! It’s not turkey, mashed potatoes, and green beans. It’s not Italian wedding soup, sweet potatoes, and stuffing. It’s not creamed corn casserole, tossed salad, and homemade bread! It’s not full bellies, dishes, and football! It's not, because today is OUR day! Next Thursday can wait!

I say this because today we focus on the good in life with Duchenne. Although next Thursday looms heavy, we have today. It’s precious. It’s now. And, it’s ours to enjoy and indulge. Let the feasting begin!

And today, this Thanksgiving, I am thankful for many things currently in our life with Duchenne.

Things like…

…seeing life from an incredible perspective I never would have dreamed
…witnessing Alex’s genuine love for everyone…seriously, everyone!
…watching him approach anyone with confidence and a smile
…seeing the hope in his eyes as his hand loosely curls for a fist-bump
…seeing his genuine joy for attending school and being with friends, teachers, assistant principals, security guards, and custodians
…listening to his hopes and dreams about life, girls, and everything teen-aged in between
…watching him work the phones in search of a friend to sleep over
…going to his school to help him use the restroom or sit him back in his wheelchair
…helping him with the simplest of tasks we often take for granted
…calming his hopes, worries, and fears
…helping him to understand life and death
…wiping his tears
…encouraging his dreams
…sharing his joys
…sharing his love
…hearing his laughter
…experiencing his smile
…holding his hand while we sleep, and
…hearing him say I love you every night.

On a personal front, I am also thankful for…

…Friday Night Pizza and Beer when Kristy and I carve out time to talk about life, Duchenne, our hopes, and our dreams (as well as listen to classic rock and enjoy a cold one or three)
…writing, fantasy sports, Sudoku, and hummus - my escapes from the daily grind
…friends who take the time to ask about Alex
…my coaches who encouraged me to do my best and never give up
…my parents who demonstrated commitment and love
…our daughter who fills us with pride and joy
…my wife who loves and completes me (and tolerates my quirks)
…our little family who travels this challenging road together.

For Alex, I am thankful for…

…Star Wars, need I say more?
…superheroes, who give him hope in the fight of good vs. evil
…video games that allow him to escape and conquer
…movies that entertain and expand his imagination
…his friends Zach, Brendan, Adam, Liam, and Ben, to name a few
…his secret crushes who shall remain nameless
…neighbors with driveways who take the time to talk and laugh with Alex
…anyone who allows Alex to pet their dog
…waiters and waitresses that share in Alex’s smile and laughter
…zoos, malls, parks, museums, and theaters or any open space for wheelchairs
…concrete, asphalt, or any other smooth surface to roll unobstructed
…storefronts without a step
…cell phones so Alex can call us whenever he needs
…Alexa for voice-activated calls (as his arms become too weak to hold a phone)
…a power wheelchair so he can get out and about
…a handicapped accessible van
…a Hoyer lift to transfer Alex from his bed to his wheelchair, and back again
…Bi-PAPs, sip vents, and cough assists
…technologies and treatments that give us another day
…caring and compassionate doctors, nurses, administrators, and technicians
…our little family
…Our son who shows us how to live!

So, there you have it. A brief and brighter side of living with Duchenne, as I see it. Although next Thursday will undoubtedly remind us of the monster’s sadistic and progressive march, Alex helps us to realize we have today and we have each other! And, nothing is more beautiful when you really think about it! For THAT perspective, we give thanks!

Life sometimes isn’t always what you expect. It isn’t always what you dreamed, hoped, or planned. But, it’s life! It’s your life! So, find the good, be thankful, and live with love!

We see no other way.

HAPPY THANKSGIVING EVERYONE!

Please pass the gravy!

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WITH ALL THE HEADWINDS

A COUPLE OF THURSDAYS AGO

HEY MOM IT'S ME

THE THIRD BRIDGE

TUG OF WAR

WE THEN PUSHED PLAY

WE GOT THIS - Part 2

WE GOT THIS - Part 1

LIFE OVERWHELMING

HAPPY JUNE!

BECAUSE OF KYLO

THE SILENT BATTLE

SITTING WITH GEORGE

THAT SPARKLE

THE INFUSION

THE HONGI

ONE POINT

WAITING, PANCAKES, AND BACK IN THE DAY

THE KEY

NEXT THURSDAY CAN WAIT

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