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.
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.
“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.
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!