Those of us who have SMA live surrounded by other people. We rely on others to bathe us, get us dressed, help us eat, move our hands, drive us to work, and to be available for any other tasks we may need assistance with throughout the…
Since the age of 3, I’ve been attending Turnstone, a local organization that runs a center for children and adults with disabilities. Over the years, I’ve benefited from the many services and opportunities at Turnstone, including joining a cheer squad, attending teen socials, and participating in therapy and adult day…
Heavy goggles cling tightly to my eyes as I try to keep my balance on my mother’s lap. Even though she holds onto my waist, with the weight of the goggles, I have to carefully concentrate on holding my head up. I have been in this position about a…
Ella’s mom, Lindsay, came home from the Marianjoy Rehabilitation Hospital over the weekend after having her lower right leg amputated because of a foot infection that lasted four years. While Lindsay was gone, Ella had to rely solely on me for her needs. And…
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…
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…
