Columns

“You’ve got a friend in me.” The title of my favorite Disney theme song, by Randy Newman, has never had greater significance for me. The last thing I would’ve expected to be my friend has, in the depths of grief and sorrow, become my strongest ally. I am a…

Two weeks ago, I tested positive for COVID-19, which can be especially dangerous for people with Duchenne muscular dystrophy. My lungs aren’t as strong as other people’s lungs, and taking a corticosteroid for nearly 20 years has weakened my immune system. But after consulting with my excellent…

“We are called upon not to be successful, but to be faithful.” This quote, which has been passed down in many forms, is one of my favorites from Mother Teresa. I’ve been thinking a lot about life with Duchenne muscular dystrophy (DMD). We’re going to our neuromuscular clinic…

It’s August, and here in Nebraska, that marks the start of a new school year. As preparations were underway at our house, a freshly sharpened No. 2 pencil rolled across the kitchen table. My oldest son, Max, who lives with Duchenne muscular dystrophy (DMD), noticed it and remarked…

When you have kids’ Legos in the house, you tend to have Legos everywhere! At least, that’s how it’s always been here with my “Party of 9.” My oldest son and second child, Max, 16, got us started with the building bricks over a decade ago. Growing up,…

Every second of our existence is like a puzzle piece falling into place on a seemingly endless dining room table. Some pieces are good and happy. Others are sad and dejected. Even the smallest, least important parts of the final image matter. When living with Duchenne muscular dystrophy, there…

Being a mother to a child with special needs is a demanding job. My children need things I cannot ignore, no matter how tired or busy I am. Last week I hit my wall, and something had to give. Maybe you noticed it was my column. I could not be…

Sometimes we need wake-up calls in life. They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get…

We had a tough day here this past week. Everyone was tired, and emotions were running high. After a long day, we hit a breaking point. I was going on day six or seven as a single parent while my husband was traveling with one of my sons for…

My oldest son, Max, was diagnosed with Duchenne muscular dystrophy (DMD) on July 10, 2010. During the following year, my sons Rowen and Charlie were also diagnosed with DMD. In a few days, it will be the 12th anniversary of Max’s diagnosis. But for me, July 10 serves…