Our sweet third baby, Jeffrey, arrived on a sunny May morning. Two months later, spinal muscular atrophy barged into our world. Hearing the prognosis of death before kindergarten was akin to being pummeled by a raging bull on one side and a tornado on the other. It snatched the proverbial…
In college, my sanctuary was the room where the majority of my classes took place. Tucked away in a secluded corner of the humanities building, the film room was akin to a small auditorium. In the center was a large screen that my professors used to showcase all…
It’s become a sort of ritual. Once every few weeks around 3 p.m., my mom will drop by my room. “So,” she’ll say, with ridiculous amounts of forced brightness. “So.” Code word for “We need to talk.” Code word for “I just checked the mail, and you’re not going to…
I gotta go climb some mountains, and I gotta do it now. That was the thought I focused on as I emerged from the pulmonary unit waiting room, weaving my wheelchair among sandstone fabric chairs arranged in a labyrinth of novice scale. Another six-month checkup appointment with pulmonary function…
My neurologist presses his stethoscope to my chest. He’s performing a routine checkup; it’s a mere formality, really, so I can be sent home with my prescription for gabapentin refilled. It’s over as soon as I breathe in and out and he has…
You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than that, I was dumb. I thought that being seen with “people like me” would ruin my street cred —…
As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to this purpose is wonderful, but let’s not limit these discussions to…
These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every Friday night — I’ve become engrossed in real-life stories about missing persons and murders. More specifically, I have become hooked…
I’ve done it yet again. I’ve fallen in love at first sight. (Would you expect anything less of an Aquarius?) I’ve been searching for a new bedroom vanity that better suits my physical needs during my morning and evening routines. Finding new, functional furniture can be a…
To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…
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