My family enjoys attending sports events and theater productions. There aren’t many things we like more than a nice meal out followed by a game or a play. However, seating for families with wheelchair users is rarely ideal. I can only speak about my family’s experiences.
School and Duchenne muscular dystrophy (DMD) don’t always go hand in hand. But of course, they can — and when they do, it’s beautiful. But even then, I doubt it’s come about without an extraordinary amount of work from the parents, the school district, or both. This school year,…
The days are long, but the years are short. I’ve often heard that sentiment from parents whose children seem to grow up too fast. I’ve had several moments myself over the years of parenting my seven children. I had one of those moments yesterday when my oldest son, Max, who…
Duchenne muscular dystrophy (DMD) is a progressive disease, but for me, the mother of three sons with DMD, things have been more nuanced. The grief I experience from being associated with a rare, chronic disease has been anticipatory, erratic, and constantly cyclical. It did not start small and grow…
I’m a caregiver. Most often, caregiving blesses me more than it does anyone else. There are times, however, when I need time away from caregiving to recharge. In my opinion, moms of children with special needs reach another level of giving. Whether the needs are caused by Duchenne muscular…
There is power in community! I’m thankful that my family is part of a big, beautiful community: the parents, professionals, and, of course, those living with Duchenne muscular dystrophy (DMD). They are, in my opinion, the best! When my three sons — Max, Rowen, and Charlie, ages 16, 13,…
A neuropsychological evaluation greatly affected how we plan to educate our 13-year-old son this school year. As Rowen begins the eighth grade, I am proud of the services he will receive. A neuropsychologist hasn’t always been a part of the care team for our three sons with Duchenne…
If you thought you missed my column last week, it wasn’t you — I didn’t write one. My kids were sick with cold symptoms. One thing you may not know about large families is that germs spread like wildfire, and the entire family gets whatever is going around. There are…
There is a busyness to parenting. Children of all ages need their parents for many reasons. And perhaps because my husband, Jason, and I have seven children ranging from 7 months to 21 years old, we feel every ounce of that busyness. I read memes and articles about the glorification…
“We are called upon not to be successful, but to be faithful.” This quote, which has been passed down in many forms, is one of my favorites from Mother Teresa. I’ve been thinking a lot about life with Duchenne muscular dystrophy (DMD). We’re going to our neuromuscular clinic…
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