It all started 23 years ago, this propensity for November to pack a punch. In the wee hours of Nov. 1, 1997, a power outage set the stage for an eventful day. Make that an eventful few days. By that time, our baby Jeffrey, diagnosed with…
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Life has been a roller coaster since my youngest daughter, Ella, was diagnosed with spinal muscular atrophy type 2 at 14 months old. Shortly after her diagnosis, Ella received a power wheelchair from our insurance company. It was 400 pounds, raised and lowered to the ground,…
When It Rains, It Pours
We all know the saying. It can never just sprinkle. It can never just be a gentle spring rain, with sprouting blades of grass and birds twittering about new beginnings. It’s either drought or deluge. There’s no in between. We’ve all had moments of absolute absurdity. Days when everything…
Some Trails Are Buddy Trails
Today is thought to be my sweet beagle’s 11th birthday. Even if it’s not her actual birthday, it’s still her unbirthday — and to any fan of imaginative literature, an unbirthday is a worthy touchstone of celebration in its own right. Our beagle, Eva, was a rescue. When my partner,…
This time of year has always been a favorite of my three children. Ava (13), Henry (12), and Ella (10) enjoy the changing leaves and the warm fall days followed by chilly nights. They delight in leaf piles and in wearing sweatpants and sweaters to keep warm. They…
Do you sleep in your wheelchair? This is a question I used to get all the time in middle school. I always thought it funny that some of my peers genuinely thought that I remained in my chair around the clock,…
If you live in the U.S., or are in any way, shape, or form active on social media, you’ll know that Tuesday is a big day for us Americans. But I want to briefly talk about what happens after the election — no matter who wins. People familiar with my…
Children typically grow up with many opportunities to participate in a variety of activities. After exploring options, they choose the ones they enjoy most. They might choose sports, or they could opt to participate in art, music, or video gaming. If passionate, they might stretch these interests into adulthood. It’s…
When the Scary Stuff Became Real
As far back as I can remember, I have had an affinity for all things scary, creepy, suspenseful, and macabre. From “Alfred Hitchcock Presents” (which includes books, black-and-white TV reruns, and movies), to true crime drama, thriller fiction, and “The Walking…
Our 10-year-old daughter Ella, the youngest of three children, was born with spinal muscular atrophy (SMA) type 2, and needs help with many tasks throughout the day. In the mornings, I get her bathed, dressed, and ready for the day. If she needs to…
Recent Posts
- High-dose Spinraza safely boosts motor function in SMA children: Data
- My home health nursing shortage was suddenly resolved
- Man with SMA type 4 shows rare fake muscle enlargement in calf: Report
- When friends become disability advocates
- Women with SMA can have successful pregnancies with team-based care
