To any parent who has a child with SMA:
Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, relationship goals, and all of the things we each wanted to do with our adult lives. I’m telling you folks, some of the most profound and thought-provoking discussions take place in the bathroom.
My dreams include publishing some of my long-form comic book projects, tabling at comic conventions and meeting more creators, and getting into voice acting. Relationship-wise, I eventually want to get married, but I also want to cultivate and maintain strong friendships with all kinds of people. I don’t want to be one of those people who uses adulthood as an excuse not to spend time with friends and family. I want to be engaged and active in my social life.
I have big dreams for my future, and I’ve always been wired this way. I mentioned in a previous column that my teenage dreams included being hired to write a “Star Wars” movie and marrying my celebrity crush. And no matter how ridiculous they were, my parents encouraged me to dream big and pursue the things that I was passionate about.
As an SMA parent, it’s only natural for you to be overly concerned for your child and to wonder about what your child won’t be able to do when they grow up. Especially during cold and flu season, I get the instinct to want to quarantine your household and put your kid with SMA on lockdown until spring arrives. Your No. 1 concern is their safety and health, and it’s OK to wonder about what their limitations will be as teenagers and adults.
Yet, while this mentality is understandable, let me challenge you to flip it for just a moment. Put aside your child’s inabilities for the time being, and instead think about their greatest strengths. What are they really good at? What are they passionate about? What can they excel at despite their physical limitations?
Instead of fearing the unknown, let your kid shoot for the stars. Encourage them to audition for that school play they keep talking about. Let them sign up for marching band. Encourage them to hang out with their friends outside of school. If they’re older, ask them about their dating life.
Obviously, your kid won’t be able to do everything, but I think you will be surprised by the things that they are able to accomplish. I’ve lived with SMA type 2 my entire life and I’ve managed to: earn a college degree, land a full-time job, speak in front of large crowds of people, have my writing published in multiple online and print sources, and be one of the sexiest people in wheelchairs alive.
Are there risks involved? Absolutely. Will letting them spread their wings require you to trust them to take care of themselves? Indeed it will. But regardless of the trepidations you have, remember that your child’s quality of life is just as important as their physical health.
Fair warning, though: Do be careful when your kid goes to preschool and wants to go full “Mad Max” on the playground, chasing the other kids in their power wheelchair with relentless pursuit.
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.
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