Memorial Day weekend has come and gone, and we’re now officially in summer mode at my house. For our family, that means lots of baseball. I have three sons — Max, 17, Rowen, 14, and Charlie, 12 — with Duchenne muscular dystrophy (DMD). But I also have one son,…
He’s getting weaker. That’s the thought that keeps me up at night. Rowen, 14, the second of my three sons with Duchenne muscular dystrophy (DMD), is declining. Rowen has always been the weakest of my three boys with DMD, and the disease has progressed faster for him than for…
The grass is finally green. Fragrance from lilac and other flowering trees fills the air. The fresh blooms brightly contrast the blue sky. These are all signs that spring has sprung and summer is just around the corner. I love seasonal changes in Nebraska. We are fortunate to experience…
Every mom I know in the Duchenne muscular dystrophy (DMD) community has a diagnosis story. When I meet a DMD mama, we often share those stories; it’s a way we get to know each other. Part of my diagnosis tale, for example, is that after my three…
My seven kids are my kids. That’s it. They all have strengths as well as weaknesses, challenges, and issues they must overcome. They also all have moments when they argue, talk back, get in trouble at school, and are genuine pains in the rear. I cannot tell you how…
In a large family, there is always something to celebrate. I have seven children whose ages range from 15 months to 21 years old. Last week, we attended opening night at the theater, baseball games, a first communion, and a belated birthday celebration. Next week, we have another opening night…
As I’ve tried to decide what part of Duchenne muscular dystrophy (DMD) to write about this week, I can’t seem to come up with the amount of focus necessary to do so. Instead, Duchenne is always there, all the time. Does that happen to anyone else? Duchenne can take…
While very serious and sometimes grim, the prognosis today for Duchenne muscular dystrophy (DMD) is the best it has ever been. This is because so many new therapies are in the clinical trial process, and some have already been approved. As a result, parents of children…
As a child, I wasn’t around people who used power wheelchairs. Perhaps because my sons were the first people I’d met who were living with Duchenne muscular dystrophy (DMD), or maybe because I’m old enough, power chairs seemed less prevalent when I was younger. After my sons were…
As a mom and caregiver to three sons with Duchenne muscular dystrophy (DMD), my focus is always on someone else, and I tend to slip lower and lower on the priority list. I’ve been thinking about this a lot lately. Since my oldest son, Max, 17, broke…
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