Columns

Duchenne muscular dystrophy (DMD) touches every part of my family’s life. Jason, my husband of 23 years, and I have seven children. Three of them — Max, 18, Rowen, 15, and Charlie, 13 — live with DMD. We’re now in the middle of what could be one of…

Wrestling videos were the soundtrack to my morning earlier this week. I was staring at a beige wall void of anything except a small white clock marking the time and the black screen of a television no one uses. Sitting in the infusion center at our local hospital, I thought…

A few years ago, my wife, Wendy, and I took a mini-vacation to Philadelphia with my brother Ron, his wife, Judy, my brother Tim, and his wife, Diane. Ron, Tim, and I had visited relatives there on a regular basis growing up, so we cruised around the old neighborhoods where…

This week, one of my boys had to get an MRI. Three of my four sons — Max, 18, Rowen, 15, and Charlie, 13 — are living with Duchenne muscular dystrophy (DMD), and they’ve had annual MRIs for the past 14 years (well, fewer for Charlie). Sometimes…

Nearly two years ago, I authored a column for this website about my reflections on the semi-autobiographical rock musical “tick, tick … BOOM!” from American composer, lyricist, and playwright Jonathan Larson (best known for “Rent”). I’d just watched the 2021 film adaptation, directed by Larson’s…

I often read social media posts from moms asking for safe and fun ideas for their children to enjoy during summer break. When my boys were younger, I worried about that as well. I wanted my three sons with Duchenne muscular dystrophy (DMD) — Max, 18, Rowen, 15, and…

As I was finishing up a recent interview with the host of “FSHD Radio: Straight Talk with Tim Hollenback,” a service of the FSHD Society, Tim’s final question was, “If there’s one thing you’d like people to know about facioscapulohumeral muscular dystrophy [FSHD], what would it be?”…

“What can I do to help?” It was my husband’s answer to the long rant I’d just finished. I didn’t know I needed an answer, but his caught my attention. Beyond the weight of my responsibilities, I was trying to carry myself — and the heft of that was crushing…

Last month was tough for me. Although celebrating my partner’s birthday on June 12 was a welcome distraction, I still had a June I’d like to forget, mainly because I spent the entire month recovering from a foot infection that hospitalized me for the last three days of May. And…

“I didn’t think you’d jump with us,” said my daughter Mary, 9, breathing heavily as she bounced from trampoline to trampoline. It’s true; I’d never taken her or her little sister Callie, 2, to the trampoline park before. But we do fun things, I thought. After thinking some more, however,…