I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work.
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In May 2017, I became an auntie to a beautiful little boy named Lincoln Anthony. I’ll never forget the day we heard the news. It was a sunny Saturday morning in early fall when my brother’s affectionately…
I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure.
Can I be totally real with you for a second? Putting yourself out there into the world is no easy task. Being honest, sharing your truth, and inviting cyberspace into your own little, unique world is an…
I think I can speak for the majority of the disability community when I say that we all crave a little more empathy and understanding from others. While I don’t expect a stranger on the street to…
Last week, I wrote about the harsh reality that sometimes is SMA. I retold the story of my attempt to drive through the mountains of New Hampshire and how after breaking down at a gas…
Crying at a random gas station in rural New Hampshire was on my long list of things I thought I’d never do. Yet, there I was, two hours away from home, coming undone and growing angrier than…
Between back-to-school commercials, first-day-of-school posts, and college-move-in-day pictures, this time of year always has me reminiscing about my days as a student. Although I am no longer shopping for notebooks and binders and figuring out if any…
For a good chunk of last year, I dreaded when people asked how I was doing. To an extent, I understood their logic. They were genuinely curious about my well-being, and showing their concern showed that…
Over the past weekend, pictures from the annual candle lighting for SMA that took place on Aug. 11 inundated my social media feeds. As most of our community knows, this lighting represents the lives lost too soon…
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…
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…
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…
