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One thing I was born with, aside from my facioscapulohumeral muscular dystrophy (FSHD), was narrow feet. As part of a working-class family, where money always seemed to be in short supply, my feet became an added expense that my mom combated by being a thrifty shopper. If she saw…

I’ve been married for 11 years. Before then, as I grew up with what I eventually discovered was limb-girdle muscular dystrophy, I learned a lot about life, perseverance, and relationships. During my 20s, I had long relationships with a couple of women with whom I thought I’d possibly spend…

The Lunar New Year has always been a time of reflection and renewal for me. This year, though, it was bittersweet because my longtime caregiver plans to return to her home country in a few weeks. With her departure on the horizon, I scaled back visits to extended family during…

I read a quote the other day on Facebook: “When you are raising babies, you feel how long the days are. When raising teens, you feel with every single bone in your body how short the years are.” Days later, I still carry those words with me as a mom…

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…

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…