The missed milestones in the teenage years because of DMD

I have three teenage sons — Max, 18, Rowen, 15, and Charlie, 13 — who have Duchenne muscular dystrophy (DMD). They have met several sweet milestones over the years, and I love celebrating them.

I’ve always made a big deal about birthdays, for instance, as well as decorating the house on the night of the first days of a new grade in school, commencement ceremonies at the end of preschool years, and promotions from elementary to middle school and middle school to high school. I share these and other celebrations on social media and in this column. I always try to focus on the good things in this hard life with Duchenne.

When my sons were newly diagnosed with DMD, for instance, no one told me that life could still be happy and full of joy. Now I make a point of sharing that truth with other families new to Duchenne. But I use such sharing as a coping mechanism, too. If I’m busy focusing on good things, sometimes I can protect my heart from some of the loss and pain that come with Duchenne.

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This week, though, all the positive thoughts in the world couldn’t have saved my heart from feeling that pain.

In our nightly routine, we send Charlie to the bathroom, as he’s still ambulatory and can do it independently. But he takes forever. That’s not because of Duchenne, but because of his never-hurry personality.

When he’s in the bathroom, we get Rowen into bed using our Hoyer lift. He takes time getting his sheets just right, asking me or my husband, Jason, to adjust his pillow and pull down his blanket at least a dozen times. Once he’s settled, we turn down the lights, but we leave them on. He likes that as he waits for Charlie, with whom he shares a bedroom.

While Jason and I wait for Charlie, we usually clean the supper dishes and pick up the house. On this night I’d collected a few items from the living room that belonged in Rowen and Charlie’s room and walked in to put them away.

Rowen had tears in his gigantic, dark brown eyes that always seem beautiful to me. Seeing them brimming with tears was like a knife to the heart.

“Rowen, what’s wrong?” I exclaimed as I wrapped my arm around him and pulled him toward me in a hug.

At first, he tried to say it was nothing, that he wasn’t tearing up. But he quickly told me he was thinking about his 16th birthday, which will come in January — mere weeks from now.

I knew exactly what that meant. Rowen was thinking about the dream of nearly every teenage boy in the Midwest: his driver’s license. And he was mourning that it wouldn’t happen for him this year.

That’s a miserable feeling for him and me. I want him to be able to drive, for my birthday shopping to be easy, and for us to go to the car lot and find the least expensive, most reliable vehicle there, as we did for his older siblings, Lexi, 23, and Chance, 17. Instead, I have to come up with another birthday gift that won’t compare.

I apologized because I genuinely wish it were different for him. I know I can’t take his disease and its physical limitations away, but I wish I could get him an accessible, modified vehicle so he can drive it.

But I can’t afford that. We’re lucky to have a van big enough for us to transport our three sons with DMD. A modified vehicle, the kind we’d need for him to drive, is so far out of our price range that it’s nothing more than a dream.

But I wish I could promise him a van. His grief may be because he might never drive, a milestone he might miss. My grief, however, is knowing that he’s never complained about his disease. He’s only mourned what DMD has taken from him. I’ve always hated his disease and have yet to find a way to save him from the pain it causes.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.