31 Days of SMA: Marriage and SMA

31 Days of SMA: Marriage and SMA

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Day 14 of 31 Days of SMA⁣⁣⠀ Topic: Marriage and SMA ⁣⁣⠀ ⁣⁣⠀ This is Collin’s story:⁣⁣⠀ ⁣⠀ "Wow, I don’t know how you guys do it” is a statement we’ve heard so many times. Sure, living with SMA and being in a wheelchair adds an extra layer of “stuff” to our marriage, but it doesn’t stop us from living life, loving one another and laughing all the way. ⁣⁣⠀ As I was growing up, my parents instilled in me the importance of having confidence in myself and my abilities. When Kyla and I first met, I was totally independent despite being in a wheelchair. I relied on my good looks and sense of humor to win Kyla’s heart. ⁣⁣⠀ Over several years, as happens with SMA, the disease progressed and I became weaker. Kyla is now my full-time caregiver. Now, after almost 14 years of marriage, a pretty amazing 10 year old daughter (thank you, IVF) a small business, and 2 dogs, we have the same struggles any old married couple has. Too many bills, not enough date nights, 5th grade homework and preparing for our future. The usual, right? An obvious difference is that I never envisioned that the person who wipes my butt would also be the love of my life. ⁣⁣⠀ ⁣⠀ I think a couple of the pre-requisites of marrying someone with SMA is a killer sense of humor and a feisty attitude. If it wasn’t for our sense of humor and laughter, how would we have made it through that time my wheelchair died while strolling the streets of New York City? Thankfully, Kyla pushed us to the train station and there was an ice cream shop inside to reward us. As for being feisty, I’ve seen many a grown man cry while my wife has defended me and made sure I’m treated equally. ⁣⁣⠀ ⁣⠀ We always say, I’m the brains and Kyla is the muscle. We are a team, through and through. No matter what we’re doing, it’s like a dance. We each have our part and I have found the perfect dance partner. ⁣⁣

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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.
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Kevin Schaefer is a writer from Cary, North Carolina with SMA Type II. He studied English at NC State University with concentrations in film studies and creative writing, and since graduating he’s been focused on freelance journalism as well as writing comic book scripts. When he’s not writing or consuming excessive amounts of comic books and movies, he enjoys spending time with family and friends and considers himself blessed that they put up with his ramblings. He is the youngest of three and lives with his parents and dog Pandora. The dog gets the most attention.

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