In last week’s column, I mentioned that thanks to the encouragement of some fellow Duchenne muscular dystrophy (DMD) moms, I’ve begun using a Hoyer lift with my 14-year-old, Rowen. He’s one of my three sons with DMD. I’ve had the lift since Rowen became nonambulatory at…
My family spent the end of June attending the Parent Project Muscular Dystrophy (PPMD) annual conference in Dallas. It was the first time I had joined the conference in person since before the pandemic, and the first time in nearly a decade that we participated as a family.
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,…
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…
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…
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…
Every mom I know in the Duchenne muscular dystrophy (DMD) community has a diagnosis story. When I meet a DMD mama, we often share those stories; it’s a way we get to know each other. Part of my diagnosis tale, for example, is that after my three…
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