Last week I had the honor of speaking at and participating in the 39th annual SOFT Conference. SOFT, which stands for Support Organization for Trisomy 18, 13, and Related Disorders, is a nonprofit that offers support and connection for families around the country who have a loved one with…
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My brother’s birthday was July 13. While we generally aren’t able to get together to celebrate, we managed to do so in 1997. Paul’s birthday fell on a Sunday back then, too. At the time, our parents served as innkeepers of the still relatively new family lodge on the…
Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged there more than anywhere else. We played games, sang songs, stayed up talking all night, and…
I turned 30 on June 29, which I suppose is why this year’s Cure SMA conference was so difficult for me. You can’t pass from one decade to another without reflecting on everything you have — or haven’t — accomplished. That type of reflection is particularly difficult when surrounded…
I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and Canada over the years: mountains and canyons, beaches and forests, oceans and lakes, national parks and…
“My SMA will weed out all of the undeserving jerks on the dating scene for me,” I once thought. Reader, I was not at all correct. Oh, how naive I was in my early 20s. In my defense, I was happily committed to a relationship with my now…
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…
