My family stands out. I’ve shared that with you before. The sheer number of children is enough to make us different. But three boys with Duchenne muscular dystrophy (DMD), often seen in their wheelchairs, make us even more for the eye to take in. Standing out was hard…
My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD parents. Issues like financial strain, stress, exhaustion, depression, and grief can create problems in the…
Before COVID-19, I used to travel a lot and participate in several in-person meetings and conferences related to Duchenne muscular dystrophy (DMD). Unfortunately, having three sons with DMD is somewhat rare, so I was sometimes shy to share this fact when introducing myself. When I did, the room would often…
In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing for the first time. The experience taught us a lot. Traveling with the boys requires…
Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always notice — like knowing that three of my children have a fatal and incurable disease, and…
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…
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