Second in a series. Read part one. No one really expected me to have a job. My advisors in high school didn’t like my career choice. I wanted to pursue being a writer. I wasn’t going to college. No, thank you, I’d had…
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I now know what it was like for Mary and Joseph when they were trying to find a room in Bethlehem. While we didn’t have to resort to sleeping in a manger, my parents and I had quite the adventure searching for an accessible hotel room in the…
In our free time together, my partner, Andy, and I enjoy adventuring. I’m not talking about the classic mammoth-sized endeavors represented by the swingin’ satchels of Indiana Jones or the sun-faded explorer hats of Josh Gates. What I refer to as “adventure” is a mindset of how I…
It’s been, as they say, a day. My parents bought an airplane hangar and are transferring it to our vacation home in Wisconsin. My dad wants to turn it into a work shed, whereas my mom envisions it as an antique store…
Do you ever have moments when a wave of gratitude hits you in the last place you’d expect? They are the kind of moments that make you stop and take inventory of your life, the kind where the littlest details suddenly become meaningful and significant. I’m a big fan of…
Everyone with SMA has their own view of life with the condition, and for that matter, of life itself. However, after talking with some contributors to the SMA News Today Forums, it has become clear that I have a different outlook than many do. I don’t mean that I…
Our old farmhouse has one bathroom and not much square footage. In the fall of 1996, it was already a cozy fit for two adults, two kids (ages 10 and 7), and two furry mutts. Then we learned we’d be adding a newborn. Rather than fret over the…
Ella sits in her power chair at a table in the hospital’s surgical waiting room. She’s coloring a picture with the words, “The Best Is Yet to Come” on it, surrounded by flowers. She works with diligence and precision. Her artwork is for her mother, Lindsay,…
First in a series. School can be a special kind of hell when you’re the awkward kid in a wheelchair. You attend normal classes, but you don’t look normal. And then the kids find out you’re smart. Too smart; a smart***.
A couple of months ago, a woman stopped me in the hallway of the clinic I go to for physical therapy. She overheard me talking with one of my physicians about my Spinraza (nusinersen) treatments, and she asked me to speak with her two teenage sons who…
