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…
Holidays are a point of contention for many people. Most of us spend the month of December attending holiday parties and family get-togethers, watching television commercials, and humming along to Christmas carols on the radio. My personal care attendant (PCA) and I were saying just…
In the midst of all the hustle and bustle that is the holiday season, I sometimes feel an overwhelming wave of nostalgia engulf me. To an extent, I imagine we all feel this way during this time of year. December sings a song of good tidings and dances…
I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins wrote what seemed like a paragraph on theirs, I simply wrote, “Ibuprofen,…
