Children grow. They grow older. They lengthen. They gain weight. The same is true for kids with SMA. Because they are wheelchair-bound, their caregivers spend much of the day lifting them in and out of their wheelchairs. Lifting them for various reasons can be…
Columns
As I’m writing this, I’m not working on a laptop, but on my iPhone. To my left is my robotic arm, mounted on the side of my wheelchair, which I’ll use later tonight to eat dinner. Over in the corner sits my chest PT equipment, which I use…
I’ve been depressed on and off for over a decade; I’ve what is called persistent depressive disorder or “dysthymia.” I still feel hopeless, I still lack productivity, I still struggle to enjoy my favorite activities — they’re just intermittent, and…
“Get off the pillow!” screamed Ava. “It’s my pillow. You get outta my room!” yelled Ella. “You wanted me in here…” argued Ava. “Well, now I don’t, so GET OUT!” screeched Ella. It’s a game of…
There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than…
I’ve been an Apple user since my senior year of high school. And before that I was an iPhone user — and before that, an iPod user, and by iPod I mean the literal brick that was the first generation iPod Classic. Apple…
The nature of SMA Type 2 makes everyday tasks difficult. Brushing teeth, getting dressed, and even drinking water can pose challenges that require others’ help. Accepting help is part of my daughter Ella’s daily life, something she’s become accustomed to from…
Guess who spent the last several days in the hospital with the stomach flu! I think I mentioned in a previous column that I haven’t been sick in — well, years. Somehow, for some reason, I’ve managed to stay pretty healthy, so…
Around almost every corner of each wall on our first floor we have small corner protectors. This is to combat Ella clipping the corners as she cruises around the house. We purposely bought our current house because the doorways from room to room are wide…
When I was a kid, I was skinny as a stick. Part of this was because I got sick so often, but the other reason was that I was a notoriously picky eater back then. I had many health issues at the time — but the…
