As a child, during the summer months, the neighborhood kids and I spent our days on the corner of my yard selling lemonade to passersby. My mother would help us prepare the drinks, she’d supply the napkins and cups, and she’d write out on a big poster…
It doesn’t happen often, but it does happen. Ella had the pleasure of being invited to a friend’s house to play after school. The trip to her friend’s house was a mere one-minute drive, and packed in the car along with…
If you follow me on Twitter, you know I’ve been seriously considering getting a tattoo for months now. A former personal care assistant (PCA) and I decided way back in 2015 that if we ever took the plunge, we’d get them together. Early in 2017,…
When you are in a wheelchair, it is clear that something is awry. I look different. Some can see past it and treat me like anyone else, but for others, it is a barrier. As a result, I am often met with responses that, while ignorant, are also…
Each morning, either my wife or I help Ella get dressed. During the school week, my wife has the responsibility, and on weekends, it falls on me. Every night, I bathe Ella and get her ready for bed. We’ve developed quite a routine for…
While spinal muscular atrophy is strictly a physical condition, it can still take a mental and emotional toll on those who have it. Between having to be dependent on others for physical needs, feeling like a burden as a result, and constantly being reminded of the things you…
Part of being disabled is waking up one morning and wishing you could be done with it all. I’ve never admitted that before, least of all in a public forum, but I think it’s something we have to acknowledge at one point…
My parents say it was another beautiful, sunny Saturday in April. They had two perfect children, a boy and a girl, like they had always wanted, and they couldn’t wait to finally start a family together. However, the merriment that usually filled the room suddenly stopped on that…
Traveling is an important part of life. While many take this ability for granted, it is next to impossible for those like me. I can take advantage of all the other modes of transportation, but airplanes are behind the times. I am unable to remain in my chair…
Surrounded by kids, friends from school, camera pointing at them, masks on, and backdrop chosen. A birthday party is in full force at a venue called Selfie Party Fun in Naperville, Illinois. A full array of activities was going on, most of which Ella can partake in,…
