Kids with SMA have brittle bones, and Ella has had her share of breaking them. Just the other day she was sitting in her power wheelchair next to the coffee table. She was playing a game on her iPad. Her power wheelchair was “on,” and her…
A few months ago at church, an usher came up to me and made a gesture that was — in his mind — “nice.” Seeing me, the young guy in the wheelchair, he placed his hand on my shoulder and said in a loud voice, “Let me know…
It’s hard losing abilities you’ve had all your life. Of course, that’s just part of having SMA. Once upon a time, I could sit up on my own. Now I can’t. Once upon a time, I could feed myself and lift my phone on my own.
I think I can speak for the majority of the disability community when I say that we all crave a little more empathy and understanding from others. While I don’t expect a stranger on the street to fall in love with me at first sight, I do expect…
After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply move into an apartment and get a job at Starbucks. I couldn’t go off to college,…
Henry’s been in soccer for quite some time now, and he’s getting really good at it. He loves to play, attends practices willingly, and looks forward to games each week. Ava takes violin during school and after school. She practices almost every day in the living…
Dragons, elves, magic, and a deaf female general are just a few of the things you’ll find in Netflix’s “The Dragon Prince.” The new animated fantasy series from the head writer of “Avatar: The Last Airbender” has already garnered many positive responses from critics…
It seems like everyone I know is getting married. People I went to high school with are updating their relationship status on Facebook to “engaged.” They change their last name and so the first few times they pop up on my news feed, it takes me…
Last week, I wrote about the harsh reality that sometimes is SMA. I retold the story of my attempt to drive through the mountains of New Hampshire and how after breaking down at a gas station, I realized my body had other plans. I explored the…
Siblings. Ella has two of them, both older: Ava (11) and Henry (9). They face all of the typical adventures that kids their age face such as school, friends, and screens. But one thing they have to work with that eludes their peers is having a…
Get regular updates to your inbox.
