The feeling doesn’t happen often, thankfully. If it did, I’d probably go crazy, as would anyone around me. No, today couldn’t be more beautiful. It's a picturesque fall day, crisp, clear, sunny, and bright. It's also mocking, isolating, and confining. And, if you aren’t too careful, it can suck the life right out of you.
Nothing significant happened today to bring about this sour mood. Alex didn’t receive a disheartening doctor’s evaluation, which seems to come with each hospital visit these days. He isn’t uncomfortable, sad, or depressed in any way. No, today is just a day, Tuesday to be exact. The only difference is that Duchenne hit me harder today than most days, for reasons I can’t explain. Does that make sense?
Please don’t get me wrong. For the most part, parenting a son with Duchenne is an incredible and unique joy. You experience true love and appreciation. You receive sincere smiles and heartfelt emotion. You see love through the simplest of actions, like holding your son’s hand and comforting him before he enters a tubular MRI for yet another hour-long heart scan. You see it when he wiggles to the rhythm of his favorite song while lying in bed. You see it when you watch complete strangers smile and laugh with your son wherever he goes. You hear it when you hoist your son with a Hoyer lift from his bed to his wheelchair, and he says jokingly…“don’t leave me hanging.” Those times make Duchenne strangely bearable, like something you could actually tolerate. Until you can’t.
On days like this, Duchenne reminds me it won’t leave until its mission is complete. I can hate it, curse it, or fight it all I want, but Duchenne doesn’t care what I think or do. Regardless of my effort, Duchenne just plops itself down in our life and stretches out like an unwelcome guest wanting another beer.
On days like this, I can’t help but notice life beyond Alex’s reach. I can’t help but notice kids running across yards, biking down sidewalks, or jumping for a rebound in a neighbor’s driveway. I can’t help but hear the sounds of lawnmower, a passing car, or flying plane overhead, and think how Alex will never experience these thrills (yes, I consider cutting grass a thrill and, because of back issues, Alex will never fly in a plane). I can’t help but notice a father and son playing catch, a kid running home when called for dinner, or a family scrambling into a minivan on their way to the next sports or school event.
On days like this, Duchenne seems to suck the marrow from my bones. It sucks the joy from my heart. Basically, Duchenne steals my son each day in the most twisted ways. As much as it encourages his abilities, it flaunts his disabilities. As much as it shows you new and happy paths to take, it reminds you of what you are missing. As much as it opens new doors, it smacks you with restriction or limitation. Duchenne simply and stealthily steals time away from your son, your family, your dreams, and your future without notice or care. Some days you don’t even realize the effects of Duchenne. But, rest assure, your son’s deconstruction continues.
When you do notice the devastation, it's utterly maddening. You notice how your son can no longer lift food to his mouth when sitting upright. You notice your son “walk” food up his chest, inch by inch to his mouth, as he lays on his back. You notice how he hooks a finger in his cheek and then turns his head to pull his arm to the other side of his body to reach something. You notice his breathing at night become shallower. You notice him tire easily or become uncomfortable often. Essentially, you notice every little thing that crops up and establishes itself as the new normal.
That’s why on days like this, I try to remind myself who am I to complain? Alex drew one of the worst cards possible in life and will hold that card throughout his entire lifetime. He can never return his card to the deck and ask for another one. He is stuck with it. Yet, you wouldn’t know it from looking at him because Alex knows how to live.
On days like this, I walk into Alex’s room and just sit. I watch whatever video he is watching, be it Star Wars, any of the Avengers, or Family Guy. I listen to his laughter and admire his outlook. I’ll even look out the window to the sights and sounds of the sunny day, and then turn back to my son lying in bed.
“What are you looking at, Dad?”
I smile and reply, “You.”
Alex will smile and then hold my gaze for a while before he turns back to the television. Within seconds, he’ll burst out in laughter no matter the joke. His outburst is music to my ears because THAT’S the way to live – joyful despite any obstacle and happy because you can be. Alex shines because he loves life. He helps others, even strangers, to shine because he exudes life and love. It's powerful….and therapeutic, even for a Dad on a sunny day.
Like this one.
Up yours, Duchenne!