Life feels a little messy right now. It feels like I have no control. As a full-time caregiver to my three sons with Duchenne muscular dystrophy (DMD) and a mother to my seven children, my days are often timed down to the minute and centered around their schedules…
Columns
The past week has been difficult. Our oldest son with Duchenne muscular dystrophy, Max, fell last week and hurt his leg. In the past several days, we’ve figured out how to dress him and help him in the shower and restroom. He was doing these tasks independently or…
Note: This column includes thoughts about suicide. Resources for help are listed at the end. On the verge of this new year, I was struck by what felt like a surrealistic event. It was a surprise I never expected, coming just three days before the end of my tumultuous 2022.
I have three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. Rowen stopped walking three years ago at the age of 11, after he fell and broke his lower leg. Of course, we did everything we could to encourage fast healing, as we…
Most days, my husband, Jason, and I take our kids to school in the same van. It’s an excellent time to be with them before school, and I get a nice 10-minute date with Jason after dropping off Charlie, the last of the kids to exit. I was especially…
We had a snowstorm last week that left us with 10 inches of snow after just a few hours. It still looks like a winter wonderland outside. My children had two days off of school as a result. We played in the snow and made cinnamon rolls and ice cream…
Birthdays can be challenging for parents of children with Duchenne muscular dystrophy (DMD). When our children were diagnosed, we were given a life expectancy. And as our children turn a year older, it’s a reminder that we’re closer to the number doctors told us when they…
On Dec. 4, I performed British singer-songwriter Calum Scott’s 2017 pop ballad “You Are the Reason” at a live caroling session with ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The performance was part of the annual Enabling Lives…
Before three of my sons were diagnosed with Duchenne muscular dystrophy (DMD), I didn’t know what I didn’t know. After that, my learning curve went straight up. I still needed to learn the amount of advocacy work it takes to be a parent to a child (or…
I do my best to try in life, but I’m not perfect by any means. That’s me. I hope that is how I come across in this column. However, I never want to make life in a Duchenne muscular dystrophy (DMD) family sound easy, perfect, or Instagram-worthy. Truthfully, if…
Recent Posts
- 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
- New analysis tracks Elevidys outcomes 3 years after treatment
- Still playing my tune with a little help from my friends