Columns

Last week was a busy one for me. In addition to my normal activities, I took field trips on Tuesday and Thursday, looking for solutions to some of my recent struggles related to facioscapulohumeral muscular dystrophy (FSHD) and other health issues. I’m really struggling to get around our…

I have always been an open book about my life. I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie…

Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“…

As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive…

I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver. At times, it feels like I’m giving…

As parents, we dedicate our lives to raising our children. We work long and hard, striving to meet their needs, teach kindness, encourage a strong work ethic, and foster self-advocacy. Our goal is to help them grow into successful adults. As a mom of many, I can see my and…

Recently, standing up has become even more difficult for me than it previously was. The last few times I sat in my comfy recliner in my music and writing room, I worried I might have to call 911 for help getting up. My son, Ryan, had already added 3-inch risers…

According to the EveryLife Foundation for Rare Diseases, more than 30 million Americans live with at least one rare disease. Considering that’s nearly 10% of the U.S. population, these diseases don’t seem so rare after all. For decades, the disability rights movement has fought for the rights of…

The comment comes in many forms: “I don’t know how you do it.” “You have your hands full!” “I can’t imagine what it would be like.” It’s always in response to seeing my large family. I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance, 18; Rowen,…

For most of my life, Duchenne muscular dystrophy has defined how I navigate the world. Duchenne is a genetic condition that causes progressive muscle loss. Over time, it weakens the arms, legs, breathing muscles, and heart. Many adults with Duchenne, including me, use wheelchairs and rely on a…