Coping… Or Not: Life as a Duchenne Dad

People often ask, “How do you cope?” The truth is, I don’t always. Coping isn’t a steady state, it’s a façade, a performance, a brave face that hides the storm inside.

As a parent and carer of a child with Duchenne muscular dystrophy, between holding down a job, my days are spent fighting. Fighting for care, for equipment, for support. Fighting with systems that move too slowly while Duchenne moves too fast. Fighting for treatments that could help, but don’t come in time for my son. Every conversation, every phone call, every letter is a battle; and though I fight fiercely, I do it with a smile, because showing the cracks feels dangerous.

Behind that smile is a different reality. I watch my son’s body change, his strength slips away, his ability to do things he once loved diminish piece by piece. I celebrate wins for other families — and truly, I do celebrate them, but inside I ache, because my boy isn’t getting those same chances. I’m proud of the progress for the Duchenne community, yet I can’t escape the truth: my son is still waiting.

Each milestone lost cuts deeper. The way he shifts from running, to walking, to relying more on his chair. The way everyday tasks become harder for him. The weight of seeing his frustration and knowing I cannot fix it. Those moments break me quietly, invisibly. Outwardly, I keep moving. I carry the mask of being “ok,” because people need me to be strong, and because falling apart doesn’t change the reality.

But the truth? It does break you. Inside, there are days I feel hollow, like the fight has taken pieces of me I’ll never get back. I want to be whole, to be the carefree parent I once imagined I’d be. Instead, I exist in this space between resilience and exhaustion, love and grief, hope and despair.

In Japan, there’s a philosophy called kintsugi: repairing broken pottery with veins of gold. The cracks aren’t hidden; they become part of the story, making the piece more beautiful for having been broken. That’s what this life feels like. Duchenne has left cracks all through me. But the love, the fight, and the fierce devotion to my son are the gold that fills those fractures. It doesn’t make me the parent I once thought I’d be, but it makes me a different kind of whole.

And part of that gold comes from finding your tribe. The people who lift you up when you’re running on empty, who see the cracks and help hold you together. For me, that’s my friends who support me and listen. It's the ADV Gym community, a place where strength is shared, where I’m reminded that even in the hardest moments, I’m not carrying the weight alone. And it’s also at home, with my incredible wife and with Zak. Their love, patience, and support are what make it possible to keep going, to keep fighting, to keep showing up even when I feel like I can’t.

And yet, somehow, I carry on. I do it because my children deserve nothing less. I do it because even when my heart is shattering, their smiles give me enough strength to fight one more day.

Coping with Duchenne isn’t about being endlessly strong. It’s about surviving the moments when you’re anything but. It’s about showing up again tomorrow, even when today has broken you. It’s about loving fiercely, even through the pain.

So, do I cope? Not really. Not always. But I keep going. For Ben, for Zak, for my wife. Always for them.