Columns

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…

Readers of my column are familiar with my Duchenne muscular dystrophy (DMD) story, which began with my diagnosis in February 1996. My older brother, Isaac, was diagnosed with DMD at birth in August 1991. My family’s DMD story, however, dates back four decades from then, to 1951,…

Years of living with facioscapulohumeral muscular dystrophy (FSHD) have taught me that it’s a balancing act on a high wire. It’s an everyday challenge to keep from falling off one way or another. Overdo it and you spend a day or two paying the price with…

My seven kids are my kids. That’s it. They all have strengths as well as weaknesses, challenges, and issues they must overcome. They also all have moments when they argue, talk back, get in trouble at school, and are genuine pains in the rear. I cannot tell you how…

It happened two weeks ago. Then it happened again yesterday. Is this my new normal? If so, what to do? Should I laugh? Should I cry? Is a little spilled milk worth getting upset? I’m an early riser, getting up each morning to say some prayers and read some meditations.

This month, I had the rare opportunity to meet Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, where she was the founding director of its Duchenne Program. My parents had heard Dr. Wong’s name since…

In a large family, there is always something to celebrate. I have seven children whose ages range from 15 months to 21 years old. Last week, we attended opening night at the theater, baseball games, a first communion, and a belated birthday celebration. Next week, we have another opening night…

As I’ve tried to decide what part of Duchenne muscular dystrophy (DMD) to write about this week, I can’t seem to come up with the amount of focus necessary to do so. Instead, Duchenne is always there, all the time. Does that happen to anyone else? Duchenne can take…

Each of us dealing with facioscapulohumeral muscular dystrophy (FSHD) is on a slightly different trajectory. For some, the disease is a series of small losses that level out to a period of relative stability. For others, the disease is a steady, steep decline. For some, the disease remains confined…