Life for our family has never been dull, but after our fortuitous move to the North Carolina mountains, “never dull” acquired new meaning. A blizzard hit a week after our arrival, flying squirrels gnawed their way into our dining room, and snow kept students hunkered down at home at least…
Columns
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to describe and explain. But as they say, if you know, you know. Consider the…
The new “Superman” movie features talking robots, giant monsters, interdimensional portals, and a crowd-pleasing, super-powered canine. Multiple heroes and villains factor into the story, and the action sequences involve a plethora of CGI-heavy special effects. It’s a big and fantastical summer blockbuster, the kind of spectacle that the superhero genre…
I live with spinal muscular atrophy (SMA), a condition that, in my case, makes it impossible for me to move my body on my own. But that’s not where my story begins — or ends. People often call me strong, but they rarely see the whole picture. They don’t…
No matter what SMA throws at me, people invest so much into my care that hardly anything keeps me down for long. I invest a lot into my care as well. Two years ago, I wrote a column about how hard I work with my Vest Airway Clearance…
There’s nothing quite like beginning a new project. It’s like falling in love with someone: Your imagination takes you on flights of whimsy, you itch and ache to have your hands on it, and there’s a possibility it will consume your life. At least for a short while. But then,…
Last week I had the honor of speaking at and participating in the 39th annual SOFT Conference. SOFT, which stands for Support Organization for Trisomy 18, 13, and Related Disorders, is a nonprofit that offers support and connection for families around the country who have a loved one with…
My brother’s birthday was July 13. While we generally aren’t able to get together to celebrate, we managed to do so in 1997. Paul’s birthday fell on a Sunday back then, too. At the time, our parents served as innkeepers of the still relatively new family lodge on the…
Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged there more than anywhere else. We played games, sang songs, stayed up talking all night, and…
I turned 30 on June 29, which I suppose is why this year’s Cure SMA conference was so difficult for me. You can’t pass from one decade to another without reflecting on everything you have — or haven’t — accomplished. That type of reflection is particularly difficult when surrounded…
