You then contemplate the path yet ahead, if you’re so lucky, and imagine yourself doing what those currently before you do every day. You wonder if you’ll have what it takes, as they seemingly do…the patience, perseverance, and fortitude to push through the certain difficult days and nights. You wonder if you’ll have the strength for hand-to-hand combat when the going gets tough. With your son's mobility long since vanished, you read of ventilation, tracheotomies, and feeding tubes, to name a few. You learn the hazards of aspiration, pneumonia, and cardiomyopathy for starters. You sigh heavily and try to shake the worry and fear, though it lingers deep, patiently awaiting its turn on your front lines, if it isn’t there already.
I say this because everyone living with Duchenne (son, parent, grandparent, or sibling) endures this silent battle whether they show it or not. Too often it’s unspoken, though it occupies your every thought. Too frequently it’s dismissed, though you can never let it go. Too perilously, it swings between I got this to WTF, as you live the phrase you ain’t seen nothing yet. As the disease weaves its way into every aspect of your life, from health to relationships to employment to finances to education to transportation to friendships to…I could go on, you wonder…Can I stop the freight train? Can I make a difference? Can I mend the heartbreak? Am I able?
Yet, you push onward.
As you watch your son grow older, you share his hardship. You understand his struggle to keep up with others, maintain old friendships, or find new ones. You feel his frustration when he cannot do things he wants to do. You pick him up off the ground when he falls, carry him on our shoulders when he cannot walk, or guide him gently via a lift to his wheelchair so he can simply move. You feed him, groom him, and support him any way you can. You smooth back his hair and hug him tight as he seeks connection while his immobility advances. You comfort his fears and mounting disappointments as his isolation grows. You listen and acknowledge how it’s unfair and how you know it hurts as his world shrinks. You encourage him to live, laugh, and love each day because it’s the only way. On tough days, you tell him it’s okay, we can overcome this, you can always count on us, or any other expression of strength, perseverance, and support. As often as possible, you tell him you are loved. Because he is and needs to know it.
But, as you wash your son’s hair, clean his body, and groom him in ways he cannot, you sense it. When you stretch his muscles in determined hope to slow inevitable tightening, prolong use, and simply buy time, you feel it. When you pick him up after falling down or lift his hand to his mouth because he cannot, you live it. Pain. Frustration. Anger. Sometimes, despair.
Oftentimes, the beast dangles hope before you and then snatches it away if you dare reach out. Despite your strength, it steals your sleep and tires you endlessly. Despite your patience, it tests your limits and escalates your frustration. And, when you enjoy that rare moment of normality, you learn not to get too comfortable because Duchenne often gets the last laugh, sometimes mocking you the fool to think otherwise.
This isn’t to say all is lost with Duchenne, it isn't, nor that hope does not exist, it does. Today, Duchenne research advances faster than ever before, encouraging hope for a cure. Drug trials targeting the heart, lungs, and other muscles, seek participants every day in hopes of slowing Duchenne’s progression and lighting the way. Advocates raise our community’s voice and lobby legislators to support funding towards it all. For those young enough to benefit, hope is very real and encouraging. For others…
Yet, you push onward.
That’s where my silent battle currently resides. As much as I fight against the beast, it grows. As much as I push it away, it returns. As much as I want to scream, it smirks. The battle is frustrating, infuriating, and enough to fill this normally peaceful man with emotions I dare not admit. Duchenne maintains a pressure on your throat, your heart and your soul that is constant, progressive, and downright evil. Do you think you can escape me? It challenges. Do you think you can ignore me? It dares. Do you think I care? It mocks. You beg and pray for the monster to leave your son and family alone. But, it doesn’t.
While you fight, you see other families living with Duchenne, some seemingly quite well. You see videos of boys walking longer than expected or standing strong and able, and smile for them. You read of young men attending college, working jobs, or getting married, and you’re happy for them. You read of Duchenne families traveling the world, getting out and about, or simply moving without pain, and you cheer them. You see parents, families, and friends running 5Ks, marathons, and even doing push-ups to raise money for a cure, and you give kudos to them. All fantastic and wonderful in their own right. All deserving of our support. Yet, all leaving you to wonder Am I doing enough? Should I be doing more? Am I losing the battle?
Yet, you push onward.
Through it all, you carry a smile and project strength, or at least try, because of those counting on you. Friends scurry about their lives, so you keep your silent battle from distracting them. Family knows too well the burden and what is required, so you share and keep it together. Your son looks to you for strength, so you give it and keep it positive as best you can. All the while, you push back against the rising tide while battling the persistent beast.
And yet, sometimes all it takes to keep fighting, to keep pushing, is an ear to hear the frustration, nip the anger, or cleanse the soul. Sometimes all it takes to keep fighting is a long hike in the woods, where your thoughts can wander, your breaths can deepen, and your priorities can straighten. Sometimes all it takes to keep fighting is a visit with family and friends to reconnect and restore life’s normality. Sometimes all it takes to keep fighting is pizza and beer on a Friday night or time spent on a summer patio to keep alive your hopes and dreams. And, more than anything, sometimes all it takes to keep fighting is to hear your son’s beautiful burst of laughter, fulfill his simple request for a hug, or hold his loving hand in yours to remind you of where you’ve been, where you are, and where you are going.