Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) on a midsummer evening in 1997. The referral to a pediatric neurologist came that morning during what was to have been his 2-month “well” checkup. Oh, the irony. Not only was our beautiful baby not well,…
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The house is full of wheelchairs, walkers, and crutches. Soon to be added will be a cane. Ella’s mom, Lindsay, had a total left knee replacement. The knee replacement was necessary because she had compensated for her right leg for many years as she battled a nasty infection…
I just finished watching “The Ataxian,” a documentary from 2015 about Kyle Bryant, a bicyclist living with Friedreich’s ataxia (FA), a rare disease which shares commonalities with SMA. The film showcases a 3,000-mile bike race across the United States completed by Bryant and…
Congratulations! You have completed another rotation around the sun. Now that the holiday celebrations are over and we have resumed our normal daily schedules, let us turn our attention toward a common practice at this time of year: New Year’s resolutions. Many people choose to start a new year by…
Let’s talk about New Year’s resolutions. For the most part, I already live the way I want to and don’t feel the need to set any new goals, so I end up with the same “resolutions” every year: Try to not get pneumonia: This is…
A few months ago, my colleague Brianna Albers wrote an excellent column about ableism in interactions with strangers. People pity those with disabilities and say things such as, “I’m so sorry for this horrible thing you have to live with.” I’ve…
For the past few weeks, social media feeds have been inundated with posts about the #10yearchallenge. It’s a way for people to showcase transformative photos of themselves. Some are from 2009 and others were taken this year. I decided to hop on the bandwagon and shuffled through old Facebook…
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…
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…
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…
