“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…
Columns
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…
This week’s column is a little different than usual. Hawken Miller, a fellow Muscular Dystrophy News columnist who has Duchenne muscular dystrophy (DMD), reached out to collaborate. Hawken, who’s also a features writer for Bionews, the parent company of this website, asked me five questions about being the parent…
This week’s column will be slightly different than normal. I reached out to fellow Muscular Dystrophy News Today columnist Betty Vertin, who has three boys with Duchenne muscular dystrophy (DMD), ages 16, 13, and 11, to seek her collaboration. I asked Betty five questions about life with Duchenne,…
Recent Posts
- Guest Voice: After diagnosis, focusing on what we can do
- Remembering a dear friend, who taught me about leaving a legacy
- What MDA Summer Camp taught me about why we show up
- Talking with my daughter about her journey with DMD carrier status
- Companies join forces to speed production of 1-time treatment for FSHD