How the Winter Olympics can remind us of the power of imagination
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…
Author Archives: Connie Chandler
On a special night, I’m heading back to dance, cheer, and yes, shine
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…
When friends become disability advocates
“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…
The ‘boondledorf’ and ‘moots’ that make up my winter survival guide
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.
I’m coming up with new ways to manage my pain without complaining
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…
A spreadsheet reset helps me manage my caregiving team for the new year
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…
Teamwork and faith helped my parents raise children with SMA
“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…
My 2026 resolution is to build stronger faith and hope
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,…
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…
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…