Just like every year, I spent the last few days of 2018 and the first few days of 2019 reflecting on life; specifically, what my life has looked like until this point and what I want it to look like going forward. It seems like every…
Since we’re in the season of embracing a new year and all the possibilities that come along with it, I thought it would be a great time to bring this up. For quite some time, I’ve grappled with the idea of “new year, new you,” wondering if it…
The final countdown is on, my friends. It won’t be long before Discovery Channel airs an hour-long special about the girl in the wheelchair who emerges into her dark, isolated den to prepare for a long winter’s nap. Wait, no. That’s a special on bears. But if Discovery…
Reading boosts children’s abilities to convey ideas, thoughts, and stories. Ella’s teachers maintain that kids should read at least 20 minutes per day, even on weekends. Kids often find a book they like in the beginning but then lose interest as they get…
Two years ago, I had just graduated from college and I found myself filled with uncertainty about my future. As a physically disabled 23-year-old on Social Security with an English degree, even I joked about the likelihood of facing unemployment and being forced into academia for…
It’s only 5:30 p.m., but it feels later, probably because I’m writing this in the back of my family’s van, the pitch black of Minnesota’s winter broken by car headlights and the occasional billboard. We’re on our way to Myrtle Beach, South Carolina, where we’ll be…
While catching up with a friend recently, I stumbled upon the next topic for this column. It was simple, really. There was no aha moment or life-changing revelation in the conversations we had, but something stuck with me that day. To many, the significance of the conversation could…
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…
