About a month ago, I came home from playing with my church’s music group at a nursing facility. We played a doubleheader, doing a set in the memory care wing, then another in the personal care area. Because of my facioscapulohumeral muscular dystrophy (FSHD), I’ve stopped doing back-to-back…
Columns
Rediscovering my creative self has been one of the most fulfilling yet challenging parts of my journey with Duchenne muscular dystrophy (DMD). A few weeks ago, I started an exciting adventure with Wildly Creative, a 14-week arts and wellness program run by the Singapore theater company Wild…
Parenting is the most challenging job I’ve ever had. When my role as a parent expanded into caregiving for three of my children, challenging didn’t even begin to describe the path that lay in front of us. I share seven children with my husband, Jason: Lexi, 23, Max, 19, Chance,…
I live in rural Nebraska with my husband and our seven children. Three of them — Max, 19; Rowen, 15; and Charlie, 14 — live with Duchenne muscular dystrophy (DMD). People who meet me in person for the first time when I’m with my family are often curious to…
Many times over the years since the 1989 car crash that nearly killed me, I’ve been asked if I had any near-death or out-of-body experiences while I hung between life and death. I always try to clarify what people mean by these terms. If we’re talking about my spirit…
In August 1985, I was diagnosed with Becker muscular dystrophy. At that time, there was no genetic test for the disease, nor DNA sequencing of the blood. Instead, I underwent a muscle biopsy on my left thigh and calf, the tissue was sent for pathology, and the medical…
The Christmas decorations are down and tucked into storage for another year. The house is clean, the counters are clear of the holiday sweets, and our routine is again in sync. However, this holiday season has left lingering fears and sadness quivering in my heart. I share seven children with…
A few days ago, I watched the Netflix documentary “The Remarkable Life of Ibelin.” I wasn’t prepared for how deeply it would move me. The film follows Mats Steen, a young man from Norway who lived with Duchenne muscular dystrophy (DMD). Online, he was known by the avatar…
Occasionally I struggle to find a topic to write about in my weekly column. I had that experience before writing this one, so I asked my husband, Jason, what I should write about. He jokingly said, “Husbands!” At first, I laughed with him, but I quickly realized it was…
In the past 12 months, our oldest daughter got married, our oldest son moved across town into a college dorm, another son started his final year of high school, and, most significantly, I returned to full-time work outside the home. Life is drastically different for our family than it was…
Recent Posts
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- CureDuchenne’s annual conference to highlight research, family support
- With my mobility severely limited, I’m in dire need of a wheelchair
- EU panel recommends expanded use of DMD treatment Agamree
- Starting corticosteroids earlier helps improve motor function in DMD