SMA Creates Unconventional Sibling Relationships

As a kid, I was notorious for dropping my cherished action figures on the floor. Instinctively, I would turn to my older brother Brian to pick them up for me. A little irritated that I had interrupted his marathon viewing of SportsCenter and “Cops,” he had an unorthodox method of helping me.

Rather than leave the comfort of the couch, he would stick his leg out, pick up my Power Ranger figure with his foot, and fling it at me with amazing execution. We did this routine for quite a while, and I was genuinely impressed by his leg-eye coordination.

My sister Erin, the oldest sibling, loved to carry me into the living room on Christmas morning. It was a fun tradition, except for the year she got so excited that she dropped me in my corner and sprinted to open her gifts. I was fine, but bless my younger cousin who saw that home video one year and asked if that was the reason I was in a wheelchair.

The three of us have come a long way since then. I no longer obnoxiously bang on Erin’s door with a toy lightsaber, and I’ve stopped forcing Brian to play with my action figures and me. We’ve seemed like a pretty normal trio of siblings, with me doing my job as the annoying younger brother and occasionally asking them for things I didn’t need, just to get their reactions.

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Being ’90s kids, we bonded over things like “Boy Meets World,” “Full House,” “The Sandlot,” and early Adam Sandler movies. We once spent Christmas Eve in Brian’s room busting our guts while watching “The Waterboy” together. My siblings were just relieved that I wasn’t asking to watch “BeetleBorgs” for the thousandth time.

Yet, while we bonded and fought like any other family, SMA made my sibling relationships a little unconventional, and also stronger than most. I always say that my parents were my primary caregivers throughout my childhood and early college years, which they were, of course. But Brian and Erin also learned to take on caregiving responsibilities from the time we were kids.

Brian and I are only two and a half years apart, so we’ve hung out together and had mutual friends since we were kids in our church youth group. He’s been giving me rides ever since he got his driver’s license, which I consider fair payback for when I let him ride on the back of my first wheelchair when we were kids. Then again, he did begrudgingly help me despite my interruptions of his TV sessions, plus he’s also helped me use a urinal on several occasions. I’ll give him a pass for the wheelchair rides and leg-toss toy routine.

Erin and I are five years apart, and she’s always been the one I go to for advice. Even though I regularly barged into her room when we were growing up and told her high school boyfriends embarrassing stories, she never shied away from giving me girl advice. If I had anxieties about pretty much anything, she knew what to say. Plus, when she got married, her husband Evan gleefully took on the role of annoying her around the clock. He and I have always gotten along well. 

From back left, Erin, Evan, and Brian, along with Kevin. (Courtesy of Kevin Schaefer)

Brian and Erin dealt with more challenges than most people, and they were each made stronger because of it. Erin spent a birthday in the hospital with me when I broke my leg, and Brian helped my parents when I fell out of my bathroom seat and slammed my head on the floor. SMA wasn’t something my siblings could prepare for, but they’ve both learned to adapt and face whatever challenges that come our way.

Today, Brian and Erin are two of my closest friends. They’re also advocates for defying disability stereotypes and calling out people who illegally park in handicapped spots — Brian loves that job. My relationship with them isn’t exactly normal, and for that, I am grateful.

Also, I’d like to mention that Erin wanted my parents to name me “Frank” after the dad on “Step by Step.” My name would have been “Frank Schaefer.” If she had her way in this situation, I might have turned out a grumpy old man in a wheelchair throwing beer cans at the TV.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.