A day of reflection leads me to a place of gratitude as a DMD mom

Once again, I’m writing from an uncomfortable chair in an infusion room as my son Max participates in a clinical trial. I frequently visit this room with my three sons — Max, 19; Rowen, 16; and Charlie, 14 — who live with Duchenne muscular dystrophy (DMD).

It’s a boring day. Well, let me take that back. Parts of the day are long and tedious because we’re sitting in this small square room, probably no more than 12 feet by 12 feet. I find myself losing focus on writing, staring at a large, navy blue poster on the wall. It features dolphins, trees, suns, planets, moons, birds, and stars, all cheerfully intermingled to form a layer of circles, each one a little smaller than the last. I keep getting lost in the patterns of circles, my eyes tracing the shapes.

I’m lost in thought until one of Max’s brothers comes in to see how much longer we’ll be, or a nurse stops by to take another set of vitals. Then I look back at the computer screen and try to type another paragraph or two.

Where are my thoughts going? They’re bouncing all over the place. If one were to join me in my mind, they might feel as dizzy as I do following the circles on the poster.

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Getting back on top of my sons’ care

I’m thinking about Max’s foot. I can see it turning in and resting on the footrest of his wheelchair in the way that instigated the phone call to an orthopedic surgeon I made earlier in the day to schedule a consultation. It’s time to consider a surgical option. This realization makes me hate DMD because no matter what I do to stall its progression, it keeps doing what it does. It’s infuriating and defeating.

My mind drifts to insurance. Max, Rowen, and Charlie are fortunate to have primary and secondary insurance. That’s a blessing. However, more often than one would imagine, one of our insurance providers will deny things that have always been covered before. Today that translates to four phone calls and a discussion with the insurance specialist at our hospital. The problem is still not resolved. How can a blessing like two insurance policies feel like such a burden at times?

My mind still bounces between the thoughts in my head. At one point during Max’s infusion, I left the waiting room to reschedule an appointment with an assistive technology office. We hope they can provide some possible solutions to Max’s and Rowen’s need for upper body support. I didn’t want to reschedule. We want to get the boys the assistive technology they need during the summer months, before school starts.

However, Rowen, who performed in his school’s spring musical, now has the opportunity to perform in the musical at the most idyllic theater in Omaha, Nebraska. Performing at this theater is the highest honor a high school musical can receive in our state. We had to reschedule the assistive technology appointment so Rowen can perform with his peers.

It prompts a profound reflection on finding a balance between preserving life and living it. I could have kept the appointment, hoping that we could have the technology in place by the time school starts, but then he’d miss this once-in-a-lifetime opportunity. Life is short, and with DMD especially, nothing is promised. I want him to have the experience!

Finally, as Max’s infusion nears its end and we prepare to leave for the day, I feel more on top of things. I’ve been working full time outside of the home for the past year. I loved it for many reasons, but I knew it could never last. I could see all the aspects of my sons’ care that were slipping because I wasn’t giving them my full attention.

Today, as I take care of all these things, I feel like I’m back in the game. I know life is getting back to the way it was when I could rest easy at night, knowing I’d given my boys my all. It’s the best I’ve felt in months.

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.