As a kid with SMA, I had numerous ongoing hardships that caused me a great deal of stress. Most 7-year-olds don’t have to deal with the prospect of a spinal fusion surgery or with the idea that pneumonia soon could strike them again for the umpteenth time.
The Christmas season is upon us. Like her mother, Ella has a special affinity for Christmas. We decorate the house right after Thanksgiving, plus send and receive greetings cards. We bring out festive clothing and hand stockings by the fireplace. We play Christmas music and watch…
A few days ago, I met with an occupational therapist to evaluate the effects of my Spinraza (nusinersen) treatments. So far, I have had six injections of this therapy, and I have noticed things like increased energy and flexibility in my muscles. Still, I don’t…
Holidays are a point of contention for many people. Most of us spend the month of December attending holiday parties and family get-togethers, watching television commercials, and humming along to Christmas carols on the radio. My personal care attendant (PCA) and I were saying just…
In the midst of all the hustle and bustle that is the holiday season, I sometimes feel an overwhelming wave of nostalgia engulf me. To an extent, I imagine we all feel this way during this time of year. December sings a song of good tidings and dances…
I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins wrote what seemed like a paragraph on theirs, I simply wrote, “Ibuprofen,…
Ella received an invitation in the mail for a birthday party. The parents called earlier in the week asking us if a dance party would be something Ella could participate in. We told them that she would be able to participate if one of us goes…
The holidays are when I spend time with family and friends, put off Christmas shopping until the last minute, and relentlessly make fun of Hallmark movies. While it’s true that Hallmark flicks aren’t as remarkably terrible and cultlike as 1978’s “The Star Wars Holiday Special” (…
A few days ago, my parents and I were reminiscing around our dining table. I’m not sure how we got onto the topic of ambulances and hospital visits. Maybe I mentioned my brush with anaphylaxis a few weeks ago and how weird it was to…
I’ve spent a considerable amount of time trying to come up with a topic for this week’s column, and it has been rather difficult. Actually, writing in general has been a struggle. Brain fog is the real deal, friends. And today’s column is brought to you by lack…
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