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My 3-year-old niece Lily sat next to me, absorbed in the pages of her “Frozen” coloring book. On my right, my dad also was busy coloring an elaborate picture for her and her baby brother. Back when Lily was born, my parents converted…

Every once in a while, I get the urge to go to the hospital. I’m not sick. I’m not concerned for my health. But there’s something about hospital stays that, when the stars align, can be incredibly restorative. I recognize this is my privilege talking. For many marginalized folks, hospital…

“So, what’s your silver lining?” a friend asked me one night in late spring. My parents and I had recently decided to go forth and allow outdoor visits again, as long as our guests followed social distancing and mask-wearing rules. He was the first visitor I had in months. I…

My teaching career started at Brockman School in Columbia, South Carolina. Nestled in the corner of a quiet neighborhood resembling a forest, Brockman was a self-contained school for children ages 3-21 with orthopedic and multiple handicapping conditions. My assignment was the kindergarten class. Several other…

Our daughter Ella is in fifth grade, learning remotely. Every day, she logs into her Zoom classroom and takes on the day’s lessons. She is dedicated to her education and enjoys her classmates, albeit online. When she has breaks during her studies, Ella plays…

I’m a big fan of mindfulness. In theory, at least. Mindfulness is associated with all sorts of benefits: greater tolerance, focus, and self-acceptance, decreased reactivity, an understanding of negative, self-sabotaging behavior patterns, and the ability to stay present, among others. It’s kind of a no-brainer. But mindfulness — specifically,…

For my birthday last year, I wrote about how each year is a blessing. I still find that to be true. Each birthday is a cause for celebration, as none of them are guaranteed. When I was diagnosed with SMA as a baby, it came with…

I was a sophomore in high school when my parents and I agreed to home-school me during the winter months. It was a spur-of-the-moment decision, but a necessary one nevertheless. In January of that year, I had been hospitalized with double pneumonia for the first time…

My 10-year-old daughter with SMA, Ella, loves animals, so much so that she has a computer game simulating the adoption, trading, and buying of animals with others. She and her friends play that game every day. We have several animals in the house, including two…

It took three people to complete my retinal scan during my vision appointment the other day. Most people can just prop themselves up against the machine, stare into the camera, and finish in no time. SMA, however, adds a few extra steps to this process.  Once…