It’s not a secret that I’m not a big fan of winter weather. But that doesn’t mean I don’t like a few things about this time of year. Specifically, I love the winter holidays! Christmas has always been my favorite. I love watching my favorite Christmas…
Columns
This time of year is my family’s time to shine — literally. Our house sits on a hill on a narrow street that runs parallel to the main road. Separating these two roads is a small patch of woods, leaving little to no privacy for our cozy abode when the…
Twinkle, Twinkle, Little Star
I’ve been in awe of spectacular night skies for as long as I can remember. When our family moved to the mountains of North Carolina (close to the stunning Blue Ridge Parkway) at the end of 1995, we realized that we were privy to the magical…
The seats in the high school auditorium filled quickly before Ella’s first concert with the Young Naperville Singers (YNS) began. We had spent the morning getting ready for the concert. Showers were taken and outfits chosen. Ella loves making videos on her iPad and decided…
There are only a couple of weeks left in the year and although I’m excited for Christmas, I’m also ready for this year to end. Let’s bring back the Roaring Twenties, shall we? But instead of roaring, maybe a long nap would be better.
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…
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 “…
Recent Posts
- Finding inspiration in the new year to make a positive impact
- High-dose Spinraza regimen approved in Europe for spinal muscular atrophy
- A spreadsheet reset helps me manage my caregiving team for the new year
- Ringing in the new year with public health insurance woes
- Adding torso exercises to breathing exercises shows gains in SMA
