Whenever my family and I meet new SMA specialists, they’re usually rather perplexed by me. They watch in amazement and excitement as my abilities defy the expected progression for an adult with SMA type 1 — someone whose rare genetic coding says they probably shouldn’t be alive, let alone…
I’ve been depending on my tracheostomy tube to supply me with sufficient amounts of oxygen for 11 years. At this point, its presence is familiar to me in much the same way as a favorite piece of jewelry that’s worn every day. I don’t always think about…
Last year, my grandma excitedly told me about the book her high school students had been assigned for summer reading. After reading only a few chapters of “Unwind” by Neal Shusterman, she was clearly hooked and insisted I read it. I didn’t need much convincing — futuristic young adult…
Many years ago, I was sitting in Disney World’s Magic Kingdom waiting for the start of a parade. A few feet away, a boy with a disability also was waiting. He was resting in a flat stroller that allowed him to lie down, and a BiPap machine helped him…
Christmas is my favorite holiday for many reasons, and gift-giving is just one. I genuinely enjoy hunting for the perfect gift for everyone on my list. It’s one of the ways I express love, and watching family and friends open hand-selected surprises brings me as much joy as opening my…
After many months of searching and navigating the challenges of house hunting with a disability (that’s a story for another day), I am extremely pleased to say that we have finally found our new home. And we’re just in time to celebrate the holiday season around the cozy, wood-burning fireplace!…
A few months ago, my brother came to my room to repeat what our mom had just instructed him to tell me. With a slightly sarcastic yet serious tone, he informed me that he could no longer refer to me as a wheelchair user, because one of his college textbooks…
Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few of the many options to be considered. After exploring volunteer work and other activities at the local disability center, I began searching for…
Disabled people and their loved ones are some of the most creative people on the planet, and I don’t just mean artistically. We have to find creative solutions to everyday problems we encounter as a result of our disabilities. Our world isn’t always accessible, and sometimes sees…
My family and I have just returned home from a fun-filled, relaxing vacation in Orlando, Florida. We haven’t taken a vacation in over two years, and it was long overdue. Vacations offer opportunities to explore a different part of the world and take a break from normal routines. But sometimes…
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