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 common cold — it can quickly become something much worse. I’ve…
Caring Together - a Column by Connie Chandler
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 a smile and a flood of nostalgia to me. Every December, for as…
One thing I love about this time of year is a little extra indulgence: twinkle lights, sugary sprinkles, and of course, a generous dollop of whipped cream on top of, well, everything! These details may not be essential to our health and well-being, but they are beautiful and delicious and…
Last in a series. Read part one. Last week, I wrote about my wheelchair and how, even though I get frustrated or embarrassed by it sometimes, I’m thankful that it gives me comfort, support, mobility, independence, and opportunities to raise awareness. Another thing I often complain about is…
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…
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 find crafty things to occupy my time. Over the years, I’ve…
“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 favorite bands. I woke up listening to it last week, and was struck by how…
“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 good night. She closes my bedroom door and goes to sleep in the adjoining…
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 SMA, too. She had so many questions, so I went to my mom because she is…
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 walk or bear weight, I use a power wheelchair as my primary…
