I have no doubt my behaviors grate Alex at times. He bristles when I say no to yet another must-have video game or DVD. Or, rightly, Alex takes issue with my exasperation when he needs to use the restroom for the umpteenth time during the middle of the night. Perhaps, it’s my encouragement for bedtime at five or six in the morning that frustrates him. Or, maybe it’s that we’re having a healthy dinner and not cheeseburgers like his friends enjoy every night, or so he claims. Dads can be a real pain, I’m sure.
Likewise, some of his behaviors can get under my skin. I’ll grin and bear it when he wants to visit his worker friends at Target or GameStop or Half Price Books and stay until closing…seriously, until closing…when they turn off the lights and encourage us to leave! I’ll bite my tongue when I discover he has downloaded another song or movie to his collection. And most of all, as those who know Alex can attest, he’s full of questions! No matter how you respond, he’ll think of more and deliver them in rapid-fire succession, thus earning him the moniker…Question Boy! It can be downright exhausting.
But, then again, Duchenne is exhausting on many levels, and can snare you into regretful words for the slightest of reasons. Not only does Duchenne encourage life, love, and devotion, but it happily stokes impatience, short tempers, and sharp tongues. Not only do you see life from a unique vantage point you never would have fathomed in your wildest dreams, but Duchenne forces you to witness the heartbreak, anger, and frustrations of immobility more often than you would prefer, with each instance capable of lighting your already shortened, sleep-deprived, fuse. Duchenne drives you crazy while it steals your son, leaving you to salvage time the best you can while you have it.
With Duchenne, you swing between joy and anger and waver between compassion and frustration. One minute you relish in your son’s zeal for life while the next you bog down in his wrath for not being able. One minute you willingly wake in the middle of the night to relieve your son’s discomfort, the next you curse the world while you walk zombie-like to his room. It's a dichotomy of extremes that can fill you with pride and wear on your soul.
My frustrations arise from the endless little things that come with Duchenne. Little things that, on their own, are trivial, but strung together are trying. Routine tasks like massaging his muscles, straightening his legs, fixing his wedgie, fixing his pant legs, fixing his shirt, fixing a tight waistband, rubbing his feet, scratching his itches, helping him use the restroom, cleaning him up, picking crumbs off his neck, wiping sauce off his face, brushing his teeth, washing his hair, lifting him higher in his bed, showering him, dressing him, hoisting him, positioning him in his wheelchair, putting a coat on him, fixing his pillows, turning him in bed, fixing his crumpled bedsheet, making him a 3AM sandwich, helping him eat, finding a movie, finding a game, setting up his laptop, finding a Lego, catching a stink bug, killing a spider, etc., etc., etc. It’s called parenting, I realize. But, when performed every day around the clock, well, each one is capable of being the straw.
For Alex, it’s different. His frustrations stem from his inabilities and his want not to bother. He doesn’t always want to call for help. He would rather not rely on others for everything. But, what can he do? He is essentially trapped in a body that won’t cooperate. Talk about frustrating! I am certain he would rather be with his friends, as would any teenager, because he is a very social kid who loves people. But, because of Duchenne, his friends have dwindled through the years and he is alone much of his day. It’s not that they are no longer friends or no longer care. They are and do. They are also understandably active, free, and mobile, which is directly opposite of Alex’s life. He doesn’t want to lie in bed all day and night or hang suspended in his Hoyer lift during transport or sit uncomfortably in his wheelchair. Without question, he would rather bound down the stairs, run out the door, and hop in a waiting car. Given the chance, he would leap at any opportunity and carry with him the biggest smile and abundance of joy you have ever seen! But, he can’t. So, if anybody has a right to be frustrated by this stupid disease, hands down, it’s Alex!
Because of this, our discussions will arise for the silliest of reasons. What starts as a ridiculously small issue, snowballs too quickly, and erases our most ardent attempts at restraint. Before you know it, patience fails and brows furrow. You’ll yell. He’ll yell. You’ll wave your arms in frustration. He’ll wiggle his body to express his own. You’ll turn away. He’ll turn his head. During these moments, you can almost hear Duchenne laugh and take devilish pride in the breakdown.
But, what Duchenne didn’t expect (or perhaps did) is that immediately after those tiresome exchanges, when words fade and emotions calm, love rises visible and attainable in its most raw and respectful form. It’s at that time when rebuilding beautifully begins. You see your son lying still and helpless. He sees his lifeline standing tall and able. You realize the mutual love then shared is nothing short of pure. Our discussions ironically strengthen our bond in the most twisted of ways and, through it all, our relationship grows stronger, and tighter, than it was ever before. When the dust settles, you take a deep breath and realize your humanity and his. Which we do, inevitably, every time.
Each time, we learn more about ourselves and our unwelcomed, shared, journey with Duchenne. What we discover is a bond between parent and child that grows stronger as time, sadly, grows shorter.
Which is why, I guess, every night we have our bedtime routine where we hold hands, apologize if we need to, laugh, giggle, and talk about life. Then, without fail and before we settle into sleep, we end by saying…love you.
Like an old married couple together until the very end.