There’s no place like home for the holidays
When I was 11 years old, I had pneumonia and spent the week before Christmas in the intensive care unit. Because I have SMA, my pulmonary functions are weaker, and when I get sick — even with a…
Author Archives: Connie Chandler
SMA meant baking cookies was our messiest family holiday tradition
Seeking inspiration for this week’s column, I asked: “Hey, Mom. What is a favorite memory you have of our family traditions during the holidays?” “That’s easy,” came the surprisingly immediate response. “Sugar cookies.” The two words brought…
Things I’m thankful for, although it might not seem like it, part 1
First in a series. In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my…
Creative collaboration brings together my SMA support network
Throughout the summer, my favorite pastime is just to be outside, for long walks, porch talks, picnics — any reason to bask in the sunshine. But as the days get cooler and shorter, I prefer to be inside and…
Pushing back against the weight of SMA amid the change of seasons
“Take the burden from my arms/ Take the anchors off my lungs …” This is the opening line to “Live It Well,” one of my favorite songs, by Switchfoot, one of my…
What receiving care from a friend taught me about giving care
“If you need anything at all, don’t hesitate, just give me a yell!” Pam says on Saturday nights as she tucks me into bed. “OK, you, too!” I reply, and we giggle and bid each other…
SMA culture is changing, but love and joy are still the best treatment
A few years ago, a good friend of mine named Essie found out that her newborn daughter had been diagnosed with SMA. She reached out to me then, as she knew I had…
More than moral support: A power wheelchair user’s race victory
Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot…
Supermom friends as caregivers, and their surprising superpowers
“Come on, girl, just use your four extra arms!” I often tease my friends like this when we’re trying to accomplish a tricky caregiving task together. Some things would go a lot smoother if we had more hands helping…
Golf and other hobbies of mine that tend to surprise people
The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore,…