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.
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?”
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.
“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.