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My husband, Randy, and I sat across from the pediatric neurologist, eagerly anticipating his opinion of what was affecting our 8-week-old baby, Jeffrey. I say eagerly because I’m an optimist, and I’d taught kindergarteners at a self-contained school for children with multiple disabling conditions. I felt confident…

Once upon a time, a pandemic enveloped the world and put my life on hold for years. With a weakened body due to SMA, and without knowing what the virus that causes COVID-19 was capable of, I decided to hunker down and prioritize my health. But while…

When rumors began circulating years ago that a certain blue police box time machine might be getting an accessible makeover, my interest was more than piqued. Would a ramp truly be added to the TARDIS when the British sci-fi show “Doctor Who” returned to the air…

Whenever it snows, I feel like I’m inside a snow globe. The sparkling flakes daintily scurry down, covering the glistening trees and other surroundings. Everything feels magical for a moment in time until, suddenly, the reality of being in an actual snow globe hits me. I’m trapped. Every year,…

At a routine dental cleaning over a year ago, the dentist informed me that a molar with an old root canal would need to be removed at some point. To prolong the tooth’s stay in my mouth, she applied a special gel then and at subsequent cleanings.

I used to have this bracelet I loved. My dad bought it for me on a whim on my 16th birthday. We were walking through a high-end department store where he spotted a Swarovski counter. He immediately went up to the salesperson and said, “I want to find something…

When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro station to get to and from the city’s Capitol building. I hadn’t taken a train or subway in years, and my blatant lack of direction as I fumbled through…

When I chose my theme for 2024, I didn’t expect to take it for a spin before the year even started. Every December, I start thinking about a word or phrase that will guide me through the next 12 months. I usually pick a theme and stick with it,…

This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I followed the traditions that come at the start of each new year. However, with introspection…

If I could go back in time a year, to Dec. 31, 2022, and retain what I know now, I’d be so excited about the people who would come into my life in 2023. I’m referring to my new nurses, who have been providing me great care. As…