Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I…
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When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears of those around me that my future might be shorter, narrower,…
My teacher parents were hardworking, generous, creative, witty, and caring. Shortly after I began college, my beloved maternal grandmother moved into an apartment added to our family’s house. During Grandmom’s episodes of congestive heart failure, Dad took her to the emergency room every time. Genuinely happy to help, he…
The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore, donned my cutest golfing outfit, and asked my official caddy to tote my clubs…
Words always come to me when I need them. Lines by Ada Limón, Anne Boyer, and Marie Howe act as life preservers, guiding me back to my center. When life gets tough, I always find myself at the feet of Julian of Norwich. “All shall be well,” she says,…
Everyone experiences times when they feel overwhelmed by problems to fix, regardless of whether they have SMA, as I do. My life right now is a work in progress, and there’s nothing wrong with that. I’m currently addressing two main issues: frequent illness and a lack of nursing coverage.
First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects. You’ll find Alexa Dectis, the child actor turned entertainment lawyer and one…
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if I drive a car. It’s a valid question because many people with disabilities do…
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them up close. Eventually, that dream became a reality as well as…
I was born on an Air Force base in Tacoma, Washington, but I grew up in Fort Worth, Texas. Texas was a wonderful place despite the chiggers, mosquitoes, and traffic. It was also oppressively hot in the summer, when only ice-cold watermelon, iced tea, ice cream, and Mexican food sounded…
