The past week has been difficult. Our oldest son with Duchenne muscular dystrophy, Max, fell last week and hurt his leg. In the past several days, we’ve figured out how to dress him and help him in the shower and restroom. He was doing these tasks independently or…
I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Rowen stopped walking three years ago at the age of 11, after he fell and broke his lower leg. Of course, we did everything we could to encourage fast healing, as we…
Most days, my husband, Jason, and I take our kids to school in the same van. It’s an excellent time to be with them before school, and I get a nice 10-minute date with Jason after dropping off Charlie, the last of the kids to exit. I was especially…
We had a snowstorm last week that left us with 10 inches of snow after just a few hours. It still looks like a winter wonderland outside. My children had two days off of school as a result. We played in the snow and made cinnamon rolls and ice cream…
Birthdays can be challenging for parents of children with Duchenne muscular dystrophy (DMD). When our children were diagnosed, we were given a life expectancy. And as our children turn a year older, it’s a reminder that we’re closer to the number doctors told us when they…
Before three of my sons were diagnosed with Duchenne muscular dystrophy (DMD), I didn’t know what I didn’t know. After that, my learning curve went straight up. I still needed to learn the amount of advocacy work it takes to be a parent to a child (or…
I do my best to try in life, but I’m not perfect by any means. That’s me. I hope that is how I come across in this column. However, I never want to make life in a Duchenne muscular dystrophy (DMD) family sound easy, perfect, or Instagram-worthy. Truthfully, if…
Is it necessary to write about my family and three children with Duchenne muscular dystrophy (DMD)? I have always felt that it is. However, sometimes, especially on social media, I am questioned and criticized when I share certain challenging aspects of life. “Why does she have to share that?”…
Bend your mind. When we discovered our middle son, who has Duchenne muscular dystrophy (DMD), was on the autism spectrum, we helped him adjust to unexpected changes by using the words “bend your mind” as a cue. We haven’t used those words with him for years, but as…
The lights shone brightly, illuminating dancers dressed in red on the stage below. The rest of the theater was dark, save for an iPad glowing toward the back of the auditorium. I sat in the dark hall on a cold Saturday night in the small Nebraska town I call home.
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