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Rewards of Being a ‘Funcle’ With SMA

Rewards of Being a ‘Funcle’ With SMA
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Christmas Eve marks four years since I became an uncle, or as I like to call myself, a “funcle.” I let my sister and brother-in-law attend to all of the important parental responsibilities, while I do things like watch Disney movies and play hide-and-seek with my niece and nephew. And because I own more toys and action figures than most children, my home office serves as a second playroom in our house. 

Becoming an uncle changed my life. My niece, Lily, was born a week after I graduated from college, and I’ll always remember the first time I met her in the hospital. I wasn’t sure if I’d be physically capable of holding her, but with my grandmother’s assistance, we made it happen. Lily was light enough at the time for me to prop her on my lap, and it remains one of my most treasured memories. 

Sappy alert! Might as well listen to Wham! and Taylor Swift while reading this column. Eh, it’s the holidays. I’m obligated to pen at least a few paragraphs of sentimentality. 

Meeting Lily. (Courtesy of Kevin Schaefer)

That day in the hospital remains one of the only times I’ve ever held Lily. I knew that my physical limitations would extend to being an uncle and that I wouldn’t be able to lift her in the air or pick her up when she falls.

And with my nephew, Lucas, I have yet to hold him once. He was born early on in the pandemic, and my parents and I had to wait about a month to see him in person. By then he was already growing, and now the kid eats like my older brother, making him a little too big for my flimsy arms to carry. 

Like every other aspect of my life, SMA makes my role as an uncle a little different. While it’s true that I can’t run around with these kiddos or get down on their level to play with them, my relationship with them is no less unique. They don’t see my limitations as a hindrance. Lily loves to play with me and include me in all her activities, and I’m pretty sure I’m her favorite uncle by a landslide. 

When Lily was a toddler, I did wonder if she’d eventually ask me about my chair or why I couldn’t do things that others could. Yet, that conversation has never happened. To her, the chair is as normal and commonplace as Olaf’s carrot of a nose. 

In Lily’s mind, ableism remains a foreign concept, which I’m sure will baffle her one day. She doesn’t pity me or see my disability as some sort of aberration that needs to be fixed. From her perspective, I’m just Uncle Kev, and the wheels are as glued to my identity as Woody’s hat in “Toy Story.” I’ll stop, but it’s impossible for me to write this column without multiple Disney references. 

Recently, my sister has been showing Lily old home videos of our family. She’s laughed upon seeing younger versions of all of us, but she did express some perplexity when she watched clips of me as a toddler. Without my chair, she had trouble recognizing me. Granted, she did instantly identify me when my mom showed her an old Halloween picture of me in a Batman costume, but caped crusaders are another thing she associates me with. I have no problem with this, either. 

Lily has seen me at home and in public, seen me go out with friends, and before this year, she regularly accompanied my mom and me to my aquatic therapy appointments. Needless to say, she’s a celebrity at the clinic I go to. 

Tinker Bell, Peter Pan, and Frodo on Halloween. (Courtesy of Kevin Schaefer)

For her and Lucas, the world of SMA and disability is wonderfully normal. They don’t have any harmful stereotypes ingrained into their minds, and one day, they’ll be able to educate their peers about people like me. For Lily, my routine, my needs, and my reliance on my parents and my caregiver Randy for my physical needs are all things she’s been accustomed to from birth. At one point, she even thought that Randy lived with us. 

Countless people in the SMA community are uncles, aunts, parents, and grandparents, and we’re all better off for it. Not only are we capable of fulfilling these roles, but also we have an opportunity to help our kids become more empathetic, more educated, and more engaged with the world around them. That is a true gift. 

Now, if you’ll excuse me, I have to tell my Alexa device to play “Let It Go” for Lily for the millionth time. Merry Christmas.

***

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.

Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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2 comments

  1. Helen Baldwin says:

    I love this, Kevin! I was teaching kindergarten at Brockman when Matthew, a little over 2, started visiting the class on occasion. My students all had orthopedic and multiple handicapping conditions. Marcus, a cute, outgoing little boy, walked with an uneven gait due to cerebral palsy. Matthew followed Marcus… with the same gait! He just thought it was the thing to do 🙂

    Many years later, Matthew and Katie learned so much more about compassion from Jeffrey’s brief stay than was possible without such a hefty assignment.

    Lily and Lucas will thrive as part of your incredible family!!!

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