Columns

I’ll admit that I was a support group cynic in my younger days. My attitude was that I’d figure things out on my own. I just couldn’t see the benefit of sitting around a table and talking to others about my struggle with facioscapulohumeral muscular dystrophy (FSHD). In retrospect,…

It’s no secret that I love the holidays. If you look through my past columns, you’ll find some about Christmas, Thanksgiving, and birthdays. I derive so much joy from creating a celebration for my family. Halloween is no exception. I am the queen of a good…

I always assumed my three sons with Duchenne muscular dystrophy (DMD) wouldn’t get to experience college. I knew it would depend on their health, disease progression, and openness to making it happen, as well as all the typical things like good grades and test scores. However, as my…

When I moved to Pittsburgh in January to be closer to my children and grandchildren, we were aware that we’d have to make modifications to our new home. Finding an accessible home in that city was impossible, especially during the pandemic real estate boom, when houses were selling…

My oldest son, Max, is graduating from high school this year. I know I’ve shared that repeatedly, but the long list of lasts he’s experiencing as a senior continue to inspire my writing. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie,…

I was mad at my husband, Jason, for spending the night in the recliner. He’d been there because he’d been snoring loudly enough at night that I hadn’t been sleeping well, and he wanted to ensure I got a good night’s sleep. But I was in no mood to recognize…

Getting surprise help when you have facioscapulohumeral muscular dystrophy (FSHD) isn’t considered newsworthy. But maybe it should be. These days, it seems that most, if not all, of the news on television and social media is bad. These negatives aren’t limited to reports on wars, hurricanes, inflation, pandemics, and…

I drove my oldest son, Max, who is 17, to his second college visit this week. As we veered onto the interstate, I told him I knew someone his age who’d already decided to attend the school we were about to visit. He was surprised. “Already?” he said. “How…

Duchenne muscular dystrophy (DMD) is not a one-size-fits-all disease. I have three sons with DMD: Max, 17, Rowen, 14, and Charlie, 12. Each differs vastly from the others, from the speed of disease progression to how their bodies handle the changes, plus how each deals with the stress and…

Back in the 1980s, as a high school special education teacher, I enjoyed giving my students an assignment at the start of the school year to see if they could follow directions. I told them to read the document I handed out before doing anything. The directions on the top…