I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and patients can experience both muscle weakness and problems with muscle control in performing tasks and activities,…
My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t…
I didn’t think we would ever have more children after I found out 10 years ago that I was a carrier of Duchenne muscular dystrophy. But here I am in the homestretch again, in the last trimester of pregnancy. The weeks have been flying by, but my pregnancy…
The title of this column comes from a meme I saw this week. Its message found me at a time when I needed to hear it. My three sons with Duchenne muscular dystrophy have appointments at Children’s Hospital Colorado the first week of December. (Yes, we must take three…
Halloween is over, and I’m happy to say we all got through it. While it was one of my favorite holidays when I was a kid, celebrating it with children with Duchenne muscular dystrophy has made trick-or-treating challenging in ways I never dreamed of. This week, I’ll be writing…
I have shared many times in this column that I have three sons with Duchenne muscular dystrophy. People sometimes think I’m an expert on the subject. But the truth is that my boys are unique, and Duchenne has affected each of them differently. Their disease progression and weakening muscles…
On a Facebook page that documents our family’s journey with Duchenne muscular dystrophy, I recently posted about how invitations to birthday parties and friends’ houses are not typical for my three boys with Duchenne, especially with them using chairs full time. However, the post celebrated the fact that my…
I think all moms need strong shoulders and extra arms. We carry purses, diaper bags, backpacks, and discarded jackets. Duchenne moms carry more, including sometimes our kids and their equipment, although I’ll admit that power wheelchairs are great for carrying bags without tipping over, unlike manual chairs and strollers.
I have a decorative sign hanging on a wall that says, “Life starts all over again when it gets crisp in the fall.” The fall reminds me that we need to begin to prepare for school. Every fall, my husband, Jason, and I attend individualized education program (IEP) meetings…
Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne. We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The…
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