I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say yes. So much of my life with spinal muscular atrophy (SMA) requires me…
Caring Together – Connie Chandler
Connie Chandler is the director of family engagement at the nonprofit organization We Carry Kevan. She grew up in the foothills of North Carolina but now owns a home and lives in Fort Wayne, Indiana. She was diagnosed with SMA type 2 when she was 18 months old. She believes the best way to receive great care is to give great care to those around her. Through her column, she hopes to share funny and sweet stories about her friendships with her caregivers and the ways they are growing together.
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How can I possibly show the deep appreciation that I have for the caregivers in my life with spinal muscular atrophy (SMA)? This is a question that burdens me often when I feel weak, inadequate, and overwhelmed by their compassion. But today is Caregiver Appreciation Day, so…
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our own pretend play world, where we could be spies, horse farmers, and baseball players; we…
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim Tebow Foundation to celebrate and honor people with disabilities. This year it takes place on Feb.
“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea chuckled, and I shrugged my shoulders. Nope, we’re…
This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season. The cold tightens my muscles, it is all too easy for me to get…
When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as severe as that of some people I know, so I’ve never needed long-term treatment for…
I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my family, and the weather in the South is usually at least 10 degrees warmer than it…
“How did your parents do it?” People have asked me this many times over the years. It usually comes up when they learn of some aspect of my independence, an accomplishment, or something else that impresses them about the way I live my life in a wheelchair with spinal…
It’s that time of year when people are thinking about resolutions, things they can do to improve themselves in 2026. Whether it’s losing weight, gaining muscle, learning a new skill, or going on an adventure, many of us like to set goals, make plans, and hope that, by…
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…
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…
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