When I returned from the annual Cure SMA conference this summer, I knew something needed to change. I made a list of everything I’d been putting off, like finding a new therapist and setting up the photo shoot I’d been dreaming of for over a year. Then, in a…
Every morning, after relieving the night nurse, my mom walks toward my bed. “Snookums!” she lovingly calls out when she sees that my eyes are open. It’s a nickname that comes straight from her heart. Everything my mom does for me, which is a lot, comes from that same place.
Our granddaughter, Clara, turns 10 this month. She loves choosing themes for her birthday parties, and “PopPop,” as she calls my husband, Randy, challenges himself to design and bake elaborate cakes to match. This year’s theme is based on the Broadway musical and film “Wicked.”…
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…
Dear reader, I did it. I made it through another Thanksgiving without being able to eat a single thing. This may not seem like an accomplishment to most, but as someone living with spinal muscular atrophy (SMA), it means everything to me. The holidays took on a different meaning…
I have, shall we say, a rather indulgent approach to the month of December, which my family and friends can attest to. By the time the holiday season rolls around, I’ve already placed carefully chosen gifts under our Christmas tree. My goal every year is to show my loved ones…
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…
Some seasons of growth don’t ease their way in; they break you open just enough to let the light shine through again. I’m in one of those seasons now, a chapter filled with reflection, honesty, and tenderness I’ve avoided for years. My disability doesn’t define me, but living with…
I don’t remember when or why my general interest in working with children gravitated toward those with special needs. Before returning to school for teacher certification in special education, I spent a year substituting in self-contained schools and classes throughout the massive Fort Worth, Texas, school system. My father was…
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…
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