I’m listening to my caregiver’s daughter talk about life as a first grader when I realize … I’m old. I don’t know when it happened. One minute, I was graduating high school, and the next I was turning 30. The thought is terrifying. Where did all that time go?…
Columns
There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the moment. Yet, a gut feeling told me otherwise. The story wasn’t finished yet. There was more…
I’ve written a lot about the support I’ve received from nurses and others. Although I always recognize the people in my life one way or another, I have yet to celebrate plenty of people, both medical professionals and nonmedical ones, through my columns. Everybody I know has gotten recognition…
Respiratory ailments never bothered my husband, Randy, or me in Fort Worth, Texas, where we grew up. Columbia, South Carolina, our destination in 1985, was wretchedly muggy but didn’t prompt any allergy issues, either. In the early 1990s, we moved to Lenoir, North Carolina, where furniture factories thrived. That would’ve…
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it was becoming a pattern. Having fallen asleep around midnight, my body was riddled with exhaustion, but…
My medical journey began with challenges but has evolved into a story of resilience and hope. Born on a sweltering August day in New York, I arrived as a gift to my mother, resembling her in several ways, including as a fellow Leo. The first six months of my life…
“Sherry, did you forget about your evening medication yesterday?” my caregiver asked as she held up a plastic bag with a vitamin pill and painkillers. It was Feb. 17, the day after I attended an Ed Sheeran concert with my brother Gabriel. In response, my faced looked like that…
“We have to, Kevin.” That’s the text my caregiver, Christian, sent me several months ago when he found out that “Star Wars” actor Hayden Christensen would soon be attending a pop culture convention in Washington, D.C. We immediately agreed that we had to go. Logistics of my…
Every once in a while, I’m seized with unbearable jealousy. That’s not true. It isn’t jealousy so much as a sense of falling behind. Social media, while great for some things, is horrid when it comes to self-comparison. Every day, we come face to face with the many ways…
It seems like yesterday that our family was eagerly anticipating the addition of our third baby. On May 18, 1997, the wait ended with the arrival of our sweet Jeffrey! Eight weeks later, though, a diagnosis of the deadliest form of spinal muscular atrophy (SMA) crushed our dreams…
Recent Posts
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- Motor unit changes track with SMA severity, new study shows
- SMA community honors legacy of disability rights activist Alice Wong
- Teamwork and faith helped my parents raise children with SMA
- SMA treatment Evrysdi shows multiple benefits for adults
