Curiosity and Sweet Moments Build Special Bonds

As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s motorized car in my living room. Our fathers were on the back porch having a drink after a long day, and the children were sitting on the floor pretending to paint the car. I couldn’t help but admire their interaction with each other. They were letting their imaginations run wild when suddenly Jackson looked up, paused for a moment, and said, “Alyssa, I wish you could walk.”

I smiled back at him and said, “Me too, kid. Me too.”

This kid. Those words. My heart. He may only be fresh out of second grade, but ever since he was old enough to talk, he has had a heart sweeter than most. Every time he comes over, he asks if he can help me with anything. He kisses me on my forehead and tells me he’ll take good care of me. And, even though he doesn’t fully grasp the extent of SMA, he understands the implications of a disease that prevents me from walking.

I was going to go a different route with this column, but his words struck me. I remember when Jackson first began to take notice of my differences. He was just a toddler and we played a game where he would tap my wheelchair’s headlight while I’d simultaneously turn it on, thus creating the illusion that he was doing a magic trick. He’d giggle, and I’d react as though it were the most mystical sight I’d ever seen. It was the first time in my life when a child noticed I was different and, in spite of those differences, chose to look past them anyway.

As Jackson grew older, he began to understand the wheelchair wasn’t just a cool gadget that his big cousin was lucky enough to play with all the time. It was something that would help “her broken legs” get around. In the beginning, that was how I’d explain my disability. I’d tell him my legs were broken or didn’t work like his, but I’d always reassure him I was going to be OK. He’d ask me a million questions out of concern and would always follow it with, “Love you, Wyssa” – a nickname he coined while trying to perfect his speech.

Without trying, Jackson’s curiosity and involvement in my life became the foundation for the bond he and I have today. Eventually, he learned about SMA, or the broad definition of how it prevents me from walking. And despite being an 8-year-old boy whose mind is mostly consumed by toys and sports, he never fails to show me compassion and empathy in the most simplistic of ways.

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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.