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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.
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…
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…
“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…
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,…
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…
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…
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…
“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…
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