Columns

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…

If you’re American and have attended a baseball game, then I imagine you’ve probably heard the song “Take Me Out to the Ball Game.” Known as the most beloved song in baseball, this classic tune has been an anthem of summer for decades. For most, it’s joyous. It’s…

“There’s no such thing as a free lunch,” I used to hear my parents say. “Even if it’s free for you, someone else is paying for it.” From the moment I could comprehend the value of a single cent, my parents began drilling financial advice into my head. They wanted…

“OK, so just pick up my arm and rest my elbow on the table right here, with my hand up toward my face. That’s right. Now do the same thing with my other arm. Yeah, like that, but move my elbows closer together. Great! Now pick up my coffee mug…

My mother dubbed me a Pollyanna many years ago. I loved the 1960 movie “Pollyanna,” but don’t remember if I identified with the orphaned character’s perpetual, cheery optimism or merely adored Hayley Mills, the actress who played her. In one scene, Pollyanna (sent to live with her wealthy,…

“I feel like my body is gaslighting me,” I said to my dad in frustration after checking my MRI results. While I was hoping to get some answers, there in plain sight were the words “findings are unremarkable.” Of course, this news was ultimately good. Unremarkable findings meant nothing serious…

For most of my life, I felt like I had to shrink parts of myself to fit into a world that wasn’t built with me in mind. Living with spinal muscular atrophy (SMA) means navigating not just physical barriers, but also the emotional weight of constantly feeling different. I…

SMA has certainly given me the privilege of seeing cool gadgets and cutting-edge technology evolve over time. For instance, I’ve had five different wheelchairs since 1987, when I was 5 years old. The technology of them has changed so much over the years that I’ve felt like a passenger…

Confession: I do not enjoy taking showers. Please don’t misunderstand me; I absolutely love the feel of hot water on my skin, the sweet fragrance of scented soaps, the soothing comfort of a shampooed head massage, and the lifestyle of good hygiene! But as an adult with SMA, the…