We made it home safely after a long road trip! And we’re all pretty much exhausted. We’ve been on some pretty intense trips over the years, but this one might be our personal best: upwards of a thousand miles in less than…
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“How come Ava and Henry get to go to their friends’ houses and I don’t?” cried Ella as Henry left to visit a friend. “It’s just not fair!” As Ella grows older, her needs change, mature, and expand. She’s at an age when she wants…
While modern technology is a nice convenience for most people, for people with SMA, it’s one of the most innovative resources we have to live independently. I recently wrote about my new wheelchair and how the features on it help me adapt to my weakening body…
“All right, Alyssa, let’s see how quickly we can do this,” I shouted to my assistant, who conveniently shares my name. I had exactly one hour to get flowers at the local supermarket and get to the hospital to visit my grandfather before his physical therapy appointment. So…
Ella’s excited to start school. She adores her school, her teachers and her classmates. Now that summer is coming to a close, Ella counts the days until she can begin going to school every day. Each day this week, she barrels in and out of the house, onto…
After three denials by my insurance provider, countless phone calls and my amazing neurologist fighting for me, I finally acquired a new wheelchair a few days ago. The process took a year, and while the insurance fiasco was a headache, at least this particular battle is over…
Some of you may know that a year or so ago I founded Monstering, a magazine for disabled women and non-binary people. It started with the desire to create and produce a small, handmade zine. I’d always wanted a space to…
Did you know that when buffalo sense a storm coming, they run into it? I recently took a writing course, and the instructor shared this fascinating tidbit with us all. Most animals and humans alike seek shelter when we feel and see a storm brewing in the distance. Lightning strikes,…
“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.” Ella is becoming increasingly frustrated with having SMA. She has…
To the average person who only visits in the event of an emergency, it may seem like hospitals have every kind of medical equipment imaginable. Even the run-down ones still have IV tubes, operating tools for major surgeries, vaccines, and a whole lot of mediocre cafeteria food.
