I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be in a new chair, and I’d say it feels like getting…
Caring Together - a Column by Connie Chandler
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to describe and explain. But as they say, if you know, you know. Consider the…
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…
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 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…
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…
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…
“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…
“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…
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…
