Celebrating an Unexpected Birthday

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by Kevin Schaefer |

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I turn 28 on the day this column goes online. Though I thought it’d be fun to publish something on my birthday, I realize that 28 isn’t a particularly special number. It’s one year closer to 30, and it feels like an eternity from the legal drinking age of 21. For better or worse, 28 is a relatively unremarkable age. 

In my case, however, 28 marks one decade past my projected expiration date. When I was diagnosed with spinal muscular atrophy (SMA) in 1995, I wasn’t expected to live past 18. Much like the network executives who said that “Mighty Morphin’ Power Rangers” wouldn’t last, the experts who told my parents how my life would go were way off. 

birthday with SMA | SMA News Today | Kevin poses with actor Jason Faunt, who is holding a Power Rangers helmet.

Kevin, left, meets actor Jason Faunt from “Power Rangers: Time Force.” (Courtesy of Kevin Schaefer)

Part of me would love to give a proverbial middle finger to the neurologist who told my mom my diagnosis over the phone, but my life today speaks for itself. My parents and I are able to laugh at the dark stuff, knowing that where I am now trumps everything else. 

While my childhood and adolescent years were undoubtedly formative, I can’t imagine my life without the past decade. There are obvious milestones like college and starting a career, but so many other experiences come to mind. 

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I remember the time I went to a friend’s Halloween party with his Christian fraternity, which was later shut down by the cops for an occupational hazard in the building. Then, there was the spring semester of my junior year when I landed an interview with actor and comedian David Koechner for the student newspaper. My mom and I drove through the aftermath of a snowstorm so I could talk with the guy who played Todd Packer on “The Office.” 

birthday with SMA | SMA News Today | Kevin interviews actor and comedian David Koechner.

Kevin interviews David Koechner. (Courtesy of Kevin Schaefer)

There’s the time a couple of friends wrecked the side door of my family’s van in the middle of a parking lot while at a comic-con. One of my most iconic Randy memories is when my bathing suit slipped while he was transferring me to a crowded family pool in the middle of the Disneyland hotel we were staying in. 

Oh, and I’d be remiss if I didn’t mention a date I went on just days after the series finale of “How I Met Your Mother” aired. I hadn’t yet watched the show, so I had no idea why this girl and so many other friends were still getting over the bitterness that the last five minutes of the episode left them with. Had this taken place just a couple years later, after I finally watched the series in its entirety and became addicted, I would have talked for three hours. But at that moment, I had little more to contribute to the conversation than awkward and dull statements like “Yeah” and “I heard it was bad.” 

In one of my more confident scenarios, I looked like a stud on the dance floor at the wedding of two of my best friends. With the help of my dance partner, who’s now a good friend, I used my Jaco robotic arm to upstage every other person at the reception. 

The moments in life that stick out the most are the ones you never see coming. There’s beauty in embracing the unexpected and putting aside the mundane. All of the aforementioned snippets of the past decade of my life are things I “wasn’t supposed” to experience, at least according to statistics and expert opinions. Thankfully, my life has a funny way of defying the odds. 

birthday with SMA | SMA News Today | Kevin and his parents sit in reclining chairs to watch a movie.

Kevin watches a movie with the people responsible for bringing him into this world. (Courtesy of Kevin Schaefer)

As I mark this peculiar milestone, I remember to cherish the opportunities I’ve had and the ones still to come. I mourn the loss of those in the SMA community who didn’t get as much time here as I’ve been given. And no matter how much time I do have ahead of me, I hope to top the memories of the last decade with even more idiosyncratic adventures. 

Also, according to this Looper article that tells you which “Lord of the Rings” character corresponds with your Zodiac sign, I’m one of the Elven royalty. With that in mind, maybe I’ll live another few thousand years.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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