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…"
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!
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.
"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?"
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.