Upon diagnosis, caregivers and SMA patients are often warned to watch the patient’s respiratory system. The weakening of this most basic function of the human body is the most common cause of death for people like myself. Hence, regular pulmonary exams are done, physiotherapists are called in to teach…
As I unpacked my suitcase after a trip to England, I found a little paper bag that held smooth pebbles, bird feathers, a snail shell, and a piece of sea glass — things that may seem common but for me hold special significance and precious memories. They were all scavenged…
Living with spinal muscular atrophy (SMA) means my body doesn’t always warn me before it spirals into crisis. One minute, I’m sleeping peacefully. The next, I jolt up, gasping for air. My ventilator blares, its alarm shrill and relentless. Another mucus plug. Again? Someone will be here soon.
My late mother, who was musically gifted, fostered an appreciation of quality music in our family. I took enough piano lessons from her to serve as her other half in a two-piano duo that lasted for decades. Whether we were performing for others or simply our own enjoyment, our go-to…
I write a lot about my able-bodied friends and the ways they care for me. But sometimes the person who can offer the best support and help is disabled as much, if not more, than me. I have many stories snuggly tucked up my sleeves, but I’d like to share…
Certain things happen when you turn 21. You come of age. You can legally drink in every state in the U.S. And, if you have a cervix, you start getting regular screenings for cervical cancer. I didn’t know that when I turned 21. I wasn’t sexually active at the…
As much as I try to shove this feeling aside, there’s a part of me that quietly dreads this time of year. Amid the beach days, hot weather, and all the other joys this season brings, I simultaneously face a significant challenge: The medical team at my hospital is changing.
“Dear God, why did you not bless me with resting bitch face?” That was my prayer on May 23, 2025. I’d been up since 8 a.m. It was past 5 p.m., and I was exhausted from a pain management nerve ablation done that day. I was on my way…
On the afternoon of July 7, 1997, a sickening thud and screams hailed from the front yard. Our older children, Matthew, 10, and Katie, 7, had been playing with our two dogs when one of them, Duffy, darted to chase the mail carrier’s vehicle. The mail carrier couldn’t avoid hitting…
“Connie, can we make some doughnuts?” Two-year-old Eden, with her blond pigtails and soulful blue eyes, asks me this question on a weekly basis. “Of course, sweet girl,” I reply and let her lead me to the carpet in the open space in my living room. “And how many doughnuts…
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