Columns

I forgot how scary hope can be. There was a time, a few short months, when I realized I was giving up. I accepted that Duchenne muscular dystrophy (DMD) would continue to progress in my sons, and there wasn’t much I could do about it. I hadn’t thrown in…

On Dec. 10, I performed “Stand by Me” by Ben E. King at the year-end music recital hosted by ART:DIS, a Singapore organization that supports the artistic development of members of the disability community. I dedicated the song to my pillars of support in my life with Duchenne…

“The stages of Duchenne.” I remember seeing this heading on many of the websites I obsessively read when I learned that my three sons, Max, 18, Rowen, 14, and Charlie, 12, had Duchenne muscular dystrophy (DMD). The stages of Duchenne are like a timeline of disease progression. Parent…

My wife, Wendy, and I have always loved having folks over to the house, especially during the holidays. We used to enjoy visiting our friends, as well. Having friends over was short-circuited when we moved to Pittsburgh in January, leaving a big part of our circle back in Shanksville,…

I’m a small-town girl. I love that I can get from one end of my hometown in rural Nebraska to the other in a few short minutes, that there is never traffic, and that the only time I get stuck in a crowd is if I go to the county…

As this column is published, it’s the eve of the fourth anniversary of my brother Isaac‘s death. He passed away on Dec. 7, 2019, from heart disease related to his Duchenne muscular dystrophy (DMD), which I have, too. I feel it’s significant, even rare, that someone with…

Note: This column describes the author’s sons’ experiences with a trial dose of Translarna (ataluren) in the U.S. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’m a mother to three sons with Duchenne muscular dystrophy (DMD): Max, 18,…

I was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) at age 14, when I was a freshman in high school. But even before that, I had begun adapting to my physical challenges. My FSHD journey actually started with a counselor from the Pennsylvania Office of Vocational Rehabilitation who visited…

Readers of my column may recall one I wrote last December, titled “How I Define Love With Duchenne Muscular Dystrophy.” In it, I shared my heartfelt thoughts about relationships, romance, and love. Today, I have positive news to share: A few months after I wrote…

How does Duchenne muscular dystrophy (DMD) affect me as a mom? Am I numb? Have I accepted it? Has DMD killed a piece of my heart? Will it keep taking parts of me? These questions have been weighing on my heart, but it’s been hard to put them into…