My parents were the first to notice that I had some art talent. Spinal muscular atrophy (SMA) wasn’t well understood when I was a child, and in an era before iPads, cellphones, and travel games, they used to let me entertain myself by doodling on the paper sheets on…
Columns
I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
For a video games journalist, I haven’t played many video games recently. Mostly, the absence of gaming in my life isn’t my fault. My laptop is almost four years old, and it’s quite determined to remind me of its age. If I were to anthropomorphize it, I would say it…
I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable question. I’m not someone who loves how-to articles or self-help books, because I…
When it comes to sleep studies, I mainly remember orange juice. Don’t ask me why. I was young then, around 8 or 9, so I have to assume the technicians were trying to bribe me or something. My last study was in 2002, so I was a little nervous when…
“Where are the cartoons?” I jokingly asked my mom while “Sherri,” the daytime talk show, played on a television above me. She chuckled as I scanned the waiting room, taking it all in. There are moments in life when gratitude and fear coexist in the most complicated and overwhelming of…
The spring of 1997 arrived with a bang. Initially stunned at the revelation of an unplanned pregnancy, my husband, Randy, and I warmed up quickly to the baby idea and considered ourselves as prepared as possible. Our son, Matthew, who was 10 years old, knew enough about the birds and…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and courageously do hard and messy things to help me live well. I am…
My mother tried persuading me to get a hospital bed at home for years. “Your uncle can help us source one that the pediatric hospital doesn’t want,” she said at one point. “Our neighbor doesn’t need hers anymore. She offered it to us. Do you want it?” Mom asked…
I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25%…
