Columns

Last week, I started a new job as a part-time community partnerships executive with K9Assistance, Singapore’s first assistance dog advocacy organization. Assistance dogs are service dogs trained to help disabled people perform tasks to mitigate their impairments. As a Duchenne muscular dystrophy survivor, I’ve always been intrigued…

There is power in community! I’m thankful that my family is part of a big, beautiful community: the parents, professionals, and, of course, those living with Duchenne muscular dystrophy (DMD). They are, in my opinion, the best! When my three sons — Max, Rowen, and Charlie, ages 16, 13,…

A neuropsychological evaluation greatly affected how we plan to educate our 13-year-old son this school year. As Rowen begins the eighth grade, I am proud of the services he will receive. A neuropsychologist hasn’t always been a part of the care team for our three sons with Duchenne…

If you thought you missed my column last week, it wasn’t you — I didn’t write one. My kids were sick with cold symptoms. One thing you may not know about large families is that germs spread like wildfire, and the entire family gets whatever is going around. There are…

As a person with Duchenne muscular dystrophy, I’ve always felt socially deprived and isolated. It’s been an extremely painful and lonely journey for me. Many of us with Duchenne also have undiagnosed anxiety and depressive disorders, adding layers of complexity to our already arduous paths. Most…

I face many obstacles because of my Duchenne muscular dystrophy. Some of them are large, like preparing for the day when I’m unable to bear my own weight. Some of them are small, like getting help scrubbing myself in the shower. Although I would rather avoid these obstacles altogether, they’ve…

There is a busyness to parenting. Children of all ages need their parents for many reasons. And perhaps because my husband, Jason, and I have seven children ranging from 7 months to 21 years old, we feel every ounce of that busyness. I read memes and articles about the glorification…

“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…