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…
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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…
Content warning: The following contains discussions of ableism and eugenics. I knew from the dedication that “Disability Visibility: First-Person Stories from the Twenty-First Century” would be healing. “To my younger self,” writes editor Alice Wong, “and all the disabled kids today who can’t imagine their futures. The world is…
On my writing desk sits a narwhal. Not an actual narwhal from arctic waters. That would be absurd. It’s a stout piece of pottery I painted alongside my niece last winter. We sat together at a creative clay studio, sharing paintbrush swirls and rainbow palettes and giggles.
In the beginning of the COVID-19 chaos, I tried to stay informed of updated health-related warnings and recommendations. I soon waved the proverbial white flag to ward off permanent whiplash from keeping abreast of the ever-changing information. During this pandemic pandemonium, my current primary daily duty is…
Our daughter with SMA, Ella, had a doctor’s appointment with her pulmonologist recently. Her grandparents took her to the appointment because my wife, Lindsay, and I were working. Ella and her grandparents started their day early and returned by mid-afternoon. During the day, we received a…
Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it adds an extra layer of discomfort. As soon as I awake, I can’t…
The romantic in me wants to believe that dreams are portents, or windows to the psyche, or invaluable self-knowledge tools. But the therapist in me, who dabbled in clinical psychology for a time, is suspicious of anything resembling psychoanalysis. (I despise Sigmund Freud, but that’s a topic for another day.)…
