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.
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)