I meant to write a column while I was in Indiana. I even imagined what it would be like to sit on campus, enjoying the sunshine and pleasant bustle of the counseling center with my new Pixelbook sitting on my lap tray. The reality of the…
When I was in 8th grade, I had an English teacher who saw right through me, in a good way. She didn’t give me special treatment, but she understood my needs and limitations, and respected them. Most importantly, she certainly didn’t walk on eggshells around the “innocent” girl…
Coming up with topics to write about can be a challenge. I was trying to settle on a topic yesterday, and it occurred to me that I have yet to cover my life philosophy: “One day at a time.” This concept has entirely transformed my life. I…
Dogs are great. We have two of them. Potter and Ginny are Hungarian hunting dogs; the breed is known as Vizsla (vee-z-shla). Vizslas are extremely family-friendly. They are known as “Velcro Vizslas” because they stick so close to their owners. Ella and…
At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
Throughout my life, I have required assistance with the most basic tasks. Things like scratching my head, getting myself a drink, or picking something up off the floor are just a few items on a never-ending list of impossibilities. Fortunately, there is now technology that can help…
Dairy Queen Ice Cream Cake. A Cabbage Patch doll. Brush-tipped markers and a slime kit. A diary and a special drinking glass (filled with Hershey’s Kisses). All the goodies Ella received on her 8th birthday. It’s hard to believe Ella is 8 years old…
With my SMA, one might think that pretty much any kind of physical activity is out of the question for me. I use a power wheelchair, have severely limited use of my arms, I struggle to turn my head to the side, and if my driving…
I’ve been struggling to get back into the swing of things now that my friends are gone. And not just with schoolwork, either. Basically, anything that isn’t Dungeons & Dragons, “National Treasure,” or self-insert role-play is having a hard time keeping my…
My father once made a promise to me as a little girl. I had been in the hospital’s intensive care unit for yet another respiratory infection, and he wanted to give me an incentive to get better. I’ve always operated best when having a goal to attain, and…
