Making it to 25 years old is no small feat. It means you’ve survived for a quarter of a century. While 18 is a clear demarcation between childhood and adulthood, 25 makes it even clearer still. I celebrated that moment on my birthday last Friday. Getting this far in life…
Columns
In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing for the first time. The experience taught us a lot. Traveling with the boys requires…
Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always notice — like knowing that three of my children have a fatal and incurable disease, and…
I often see posts in Facebook groups and other places asking about what holiday gift ideas people might have for sons with Duchenne muscular dystrophy (DMD). Duchenne can affect different muscle groups, and patients can experience both muscle weakness and problems with muscle control in performing tasks and activities,…
It’s good to have you back to my column, “Hidden Truths.” I appreciate everyone who takes the time to read my reflections on life with limb-girdle muscular dystrophy. As I was considering what to write this week, I received a wonderful comment on a recent column from a…
Millions of people around the country have quit their jobs in search of more fulfilling work, better hours, and work-from-home options in what the media is calling the “Great Resignation.” Some of them, I’m sure, are realizing that they don’t need to work a full 40 hours to accomplish…
My husband, Jason, and my three sons with Duchenne muscular dystrophy — Max, Rowen, and Charlie — just pulled out of the driveway. They are headed to Denver for neuromuscular appointments that start this week. A couple of weeks ago, I shared in a column that I wouldn’t…
Learning when to say yes and when to say no has been especially important for me as I live with Duchenne muscular dystrophy (DMD). It’s a balance between trying to rise up in my career by accepting story assignments, and saying no to events, friends, and more assignments so that…
I didn’t think we would ever have more children after I found out 10 years ago that I was a carrier of Duchenne muscular dystrophy. But here I am in the homestretch again, in the last trimester of pregnancy. The weeks have been flying by, but my pregnancy…
Welcome back to my column, “Hidden Truths.” While I tend to write that at the beginning of most of my columns, I genuinely appreciate you checking in. You consciously decided to click on the column and made it a part of your day. You could have chosen thousands…
Recent Posts
- FDA fast tracks Dyscorban for treating heart problems in Duchenne
- My emotions blurred as I watched my play from ‘The Other Side’
- MDA-led project to map how human muscles repair themselves
- My willingness to educate others about MD benefits all of us
- The unbearable weight of grief that smoothes the jagged edges