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…
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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”…
The first time one of my personal care assistants (PCAs) brought her daughter, I was kind of in awe. She was only a few months old at the time. She slept most of the day and could be trusted to lie on my bed, staring up…
Can I get a show of hands of all the folks who agree that living with SMA can be incredibly unpredictable? OK, maybe that wasn’t the best way to take a poll. However, I imagine you’re nodding your head in agreement. You probably raised your eyebrows when you thought…
My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to make an ultimate decision.
Ella and I sat at Dunkin’ Donuts, conversing about MDA Camp. (MDA is the Muscular Dystrophy Association.) She thoroughly enjoyed camp for all the wonderful activities she did, and especially for the people she became friends with. The camp wasn’t all peaches and…
