I’ve been putting this column off for a while. While I’m perfectly fine with sharing some things, I generally don’t like to talk about the people in my life. But this is something most, if not all, SMA patients deal with at some point, and I…
Columns
It seems like just yesterday I was living in a perpetual state of chaos. My life was going a million and one miles per hour, and there was no stoplight in sight. Most days, I was struggling to make ends meet, always trying to juggle healing my body,…
Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging from ignorant and annoying to genuine and understandable. While I can’t…
It’s been a long summer. The kids have found things to keep them busy, but playdates for Ella have been few and far between. That is, until new neighbors moved in just down the block. Our new neighbors are from New York,…
When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way. Case in point: the majority of my family’s vacations. You could easily…
My head has been feeling pretty good lately, thanks to the humidifier I recently started using. So, today I walked into my ENT appointment pretty optimistic. The nurse was actually the same person who administers my allergy shots, so it was nice seeing a friendly face.
The past four weeks have taught me some hard lessons, which came as no surprise. I’m the type of person who constantly searches for meaning and purpose during every peak and valley of life — especially the valleys. Finding valuable takeaways from every difficult situation in my life…
Being tied to someone 24/7 is par for the course in my life. I require others to meet my physical needs. Usually, those needs are met by family, but I also worked with many different nurses throughout my schooling. During those years, I spent more time…
I stood in Home Depot watching an employee cut pieces of wood for me so I could build a foundation for the two sheds I’d just bought. He measured and cut, measured and cut. Once finished, he helped me pick out the right screws to use…
As a child of the mid-1990s and early 2000s, I still remember when Saturday morning cartoons were still a thing. Every Saturday of my childhood consisted of my parents propping me on my bench in our bonus room so I could watch everything from “Power Rangers”…
