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.
Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all of these concerns have in common? Unfortunately, they’re things I never…
Like many, we have a tradition of buying a real Christmas tree every year during the weekend after Thanksgiving. It just doesn’t feel like Christmas until we have visited our local tree farm to pick out the perfect one. I love everything about that day — the damp pine…
While I love Christmas, I’m a Thanksgiving girl, too. Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t get serious until we put the last leftovers from our turkey…
I have three sons with Duchenne muscular dystrophy (DMD). We had little need for durable medical equipment when they were young, but their needs have changed as they’ve aged and their disease has progressed. We have hospital beds, power wheelchairs, a stair lift, and a ceiling lift system.
Get regular updates to your inbox.