Four years ago, I put on my big-boy pants and finally learned how to feed myself. Throughout my high school and college years, I was too lazy to pick up a fork on my own. Instead, I just played the disability card and relied on the sympathies of…
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Like a decent percentage of the global population, I have part of the “Frozen II” soundtrack stuck in my head. The movie is about the unknown. Self-acceptance. Stepping into your power. Themes that are fitting for me, as the sun sets on the second decade of my…
This week was my daughter Ella’s turn to have a date with me. My wife, Lindsay, and I try to spend one-on-one time with each of our three kids on a rotating basis. It fosters relationships and gives them individual attention away from home. Ella…
A few columns ago, I wrote that I no longer was pursuing Spinraza (nusinersen). I still have no qualms about that decision, because we have a number of potential treatments that are slowly making their way to FDA approval, including risdiplam.
During the recent Thanksgiving holiday, I spent a lot of time reading, going to movies, and streaming shows at home. I particularly enjoyed the Netflix documentary series “The Movies That Made Us,” which tells the original stories of classic films like “…
My parents and I recently attended a National Philanthropy Day breakfast with a group of staff from Turnstone, our local center for people with disabilities and their families. I’ve been a client at Turnstone since I was 3 years old, and I have started volunteering there in the…
I was recently strolling through the best-sellers section of a bookstore and couldn’t remember the last time I had set foot in one. I had just stopped in for the Starbucks coffee. However, while my personal care assistant ran to the bathroom, I decided to peruse the book display near…
Our third baby, Jeffrey, shook things up from the moment the nurse at the doctor’s office exclaimed, “You’re pregnant! You’re very pregnant!” She seemed exceptionally delighted to announce the confirmation. Although my husband, Randy, and I were shocked at the news of having a newborn in middle age, there…
The holidays are upon us. In our house, Christmas starts the day after Thanksgiving. The house gets decorated, winter candles are lit, and Christmas music fills the rooms. The kids are old enough to help decorate. The dogs even have Christmas bandanas around their necks. Our…
At the beginning of November, I got sick. It was inevitable, though I had received a flu shot and we were careful. Sometimes you just get a little unlucky. Usually when this happens, I give it a couple of days to see how I’m doing. If…
