She’s 7
Ella sits in her wheelchair crying. Her mom is right there with her holding her hand. I walk into the room and stand looking at the two of them. I figure out they are in a deep conversation as Lindsay waves her hand at me.
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Avoiding the Flu, Catching Pneumonia Instead
It’s been a pretty lousy week for me, to say the least. What started as a ridiculously annoying cough in the middle of the first week of February eventually resulted in a trip to the emergency room the following Saturday. “Please don’t say the P-word, please don’t say…
In Defense of My Identity as Disabled
A majority of my classwork this semester revolves around discussion forums: posting our analyses of different counseling theories and responding to other people’s analyses, among other things. It’s a staple of online education and, after several years of it, I’ve gotten to the point…
How My Occupational Therapist Changed My Life
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…
Growing Up: Ella Goes Solo
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…
Accessibility and the Never-ending Quest for a Tattoo
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,…
Tongue Slips and Shoulder Chips
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…
The Challenges of Parenting a Child with SMA
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…
3 Things that Helped Me Combat the Mental Effects of SMA
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…
On Getting Up Again
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…
