The toddler was crying, hungry for a snack, standing just behind me as I sliced pieces of watermelon. But I was smiling. The big kids were in the pool, and I knew they’d be delighted to have watermelon on the deck. I cracked open the sliding glass doors and yelled,…
Columns
I was blessed to be able to provide music for the annual gathering of the United Church of Christ’s Penn West Conference earlier this month. Everything went well. My wife, Wendy, had plenty of help moving my equipment into the venue. The technical staff from PennWest California did…
While the boys are away, it’s time to play! Well, not exactly. My three sons with Duchenne muscular dystrophy (DMD) — Max, 17, Rowen, 14, and Charlie, 12 — are away this week at Muscular Dystrophy Association Summer Camp. But instead of rest, my husband and I are…
Like many families in the Duchenne muscular dystrophy (DMD) community, we’re preparing to send our three sons with the condition to a weeklong camp for young people with muscular dystrophy. I’ve spent the week preparing everything for Max, 17, Rowen, 14, and Charlie, 12, to attend the…
A couple weeks ago, as I was looking through social media, a memory from several years ago appeared on my timeline. I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. In May 2019, the boys and I traveled to Los Angeles to…
One cozy night last September, my parents and I relaxed in the living room after dinner. My father turned to me and asked for a movie recommendation. It’d been awhile since we’d done this — our cherished family tradition of watching movies together on weekend evenings. In 2019, we lost…
Memorial Day weekend has come and gone, and we’re now officially in summer mode at my house. For our family, that means lots of baseball. I have three sons — Max, 17, Rowen, 14, and Charlie, 12 — with Duchenne muscular dystrophy (DMD). But I also have one son,…
He’s getting weaker. That’s the thought that keeps me up at night. Rowen, 14, the second of my three sons with Duchenne muscular dystrophy (DMD), is declining. Rowen has always been the weakest of my three boys with DMD, and the disease has progressed faster for him than for…
If you’ve been reading my column since I started writing for Muscular Dystrophy News Today, you know I recently moved to Pittsburgh from Shanksville, Pennsylvania. Over the past few years, as my facioscapulohumeral muscular dystrophy (FSHD) progressed, I tried physical therapy (PT) twice to regain strength.
The grass is finally green. Fragrance from lilac and other flowering trees fills the air. The fresh blooms brightly contrast the blue sky. These are all signs that spring has sprung and summer is just around the corner. I love seasonal changes in Nebraska. We are fortunate to experience…
Recent Posts
- FDA fast tracks Dyscorban for treating heart problems in Duchenne
- My emotions blurred as I watched my play from ‘The Other Side’
- MDA-led project to map how human muscles repair themselves
- My willingness to educate others about MD benefits all of us
- The unbearable weight of grief that smoothes the jagged edges