Ella spends a lot of time in the breakfast room just off the kitchen. She does her homework at the table, where there are pencils, pens, rulers, scissors, and paper. She plays with her iPad, talks with her friends on FaceTime, and eats her snacks.
For most of my adult life, I’ve been fortunate to maintain my physical health. Aside from a bout with pneumonia in early 2018 and a broken femur the previous year, I’ve experienced an overwhelmingly positive health streak since…
I feel like it’s been forever since I last wrote one of these things. It may be because between the holidays, the start of a new month, year, and decade, and school (which is frankly turning out to be the semester from hell), I feel a little bit…
Because of SMA, I have met people that I might never have crossed paths with otherwise. I’m blessed with the opportunity to connect with nurses, physicians, equipment providers, and other SMA families. I love all of these unique connections, but I especially cherish my relationship with my best friend, Kim.
Ella’s mom, Lindsay, had a complete knee replacement on Jan. 8. She stayed in the hospital for two days before being discharged. We set her up in a pullout bed in the family room while she recovered. The first week went well: She did her exercises, iced and…
Amid its heart-pounding fight sequences and images of Michael B. Jordan carrying car tires in the middle of the desert, the film “Creed II” offers a poignant representation of disability. In this umpteenth sequel to the original “…
As I write this, I’ve been home for 11 days. Actually, let me rephrase that. I haven’t left this house so much as to go outside to get some fresh air, feel the sunlight gently grace my skin, or see what the outside world has been up to for the…
Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) on a midsummer evening in 1997. The referral to a pediatric neurologist came that morning during what was to have been his 2-month “well” checkup. Oh, the irony. Not only was our beautiful baby not well,…
The house is full of wheelchairs, walkers, and crutches. Soon to be added will be a cane. Ella’s mom, Lindsay, had a total left knee replacement. The knee replacement was necessary because she had compensated for her right leg for many years as she battled a nasty infection…
I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The film showcases a 3,000-mile bike race across the United States completed by Bryant and…
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