What’s it like to have three sons living with DMD?

What’s it like to have three children with Duchenne muscular dystrophy (DMD)? That’s the question I’m asked more than any other, as a mom and caregiver to three sons with DMD: Max, 18, Rowen, 15, and Charlie, 13.

Of course, that question is only asked by parents or grandparents of children with Duchenne. I assume that’s because those living outside the DMD community don’t know what it’s like to live with Duchenne to begin with, so they don’t realize that having three with the condition is different.

In my case, though, I don’t know what having only one or two sons with Duchenne is like. Once Max was diagnosed at age 4, we quickly realized Rowen and later Charlie had it.

Caring for three is more challenging than caring for fewer (especially with four other children who don’t have DMD). Yesterday, for example, I showered the oldest two boys, consuming a good chunk of the morning. Whenever I shower two or all three boys in one day, I feel accomplished and productive.

But I don’t want to linger on what the day-to-day of caregiving is like. That part is similar to having one with DMD, just multiplied. I want to share other issues about having three with the condition, in hopes that I’ll illuminate how different it is.

Recommended Reading

May 23, 2024 News by Marisa Wexler, MS

Study highlights psychological, social challenges of having DMD

Brotherly behavior

Having Duchenne doesn’t stop them from acting like brothers, for instance.

The idea for this column occurred to me in church. I was kneeling and trying to pay attention to the service, but I was wholly distracted — not by our toddler in the pew, but by the three teenage boys sitting in the aisle next to me in their power wheelchairs.

Max, Rowen, and Charlie don’t like other people messing with their chairs. I get it. Those chairs are an extension of their body. And because I know they feel this way, I don’t let anyone mess with their chairs — but their brothers do it anyway. Each understands that messing with a brother’s chair will bother him, which sometimes is the goal.

They constantly touch the handles on the back of a brother’s chair, push the chair’s horn, or knock the toggle off. That’s what they were doing in church, in fact. Charlie was behind Rowen and kept kicking Rowen’s chair with his feet. Rowen was so mad that he started throwing his body backward to make his chair move so it’d hit Charlie. Meanwhile, Max kept putting his arm on Rowen’s armrest until Rowen tried to hit it off.

I had to redirect their behavior to focus on the church service multiple times. And because of the setup of their chairs, I wasn’t able to separate them!

Frustrating questions

They also hate when someone asks if they race their wheelchairs or if they’re triplets.

I understand that seeing three similar-looking boys together in similar-looking chairs is something most don’t see every day. Many people stare, but others ask questions — two of which the boys find offensive and annoying.

The most-asked question is if they “race those things.” They’re wheelchairs, not dune buggies, so don’t call them “things,” scooters, or buggies. But of course the boys race; they’re brothers, and probably even worse, they’re Vertins, which means they have a competitive spirit.

But there’s so much more to notice. They like when someone comments on their chair’s color or design. It’s even better if someone notices their shoes or funny T-shirt and talks about it. When that happens, it’s apparent they were seen as individuals, not as chairs.

And no, they’re not triplets. Yes, they look like brothers and drive similar wheelchairs, but they have different ages, heights, and weights, as well as different colors in their eyes and hair. All of that would be evident if the potential questioner observed the young man beyond his chair.

Caregiving preferences

I wish this one were untrue because it’d make my life easier: When my sons were young and Rowen was the first to stop walking, I assumed that once I learned how to transfer him, shower him, and brush his teeth, it’d be the same for each.

However, they like these tasks done differently. When we transfer Rowen, for example, he likes the chair’s footrests down, but Max wants us to put them up. Rowen prefers the Hoyer lift and Max the ceiling lift. And while I’d thought one shower chair would serve all three, I was wrong. Rowen’s is too big and uncomfortable for Max, so we now have two sizes of shower chairs.

So what’s it like to have three sons with DMD? I only know life with three. But I know this: They’re all individuals, not a collective.

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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.