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How Volunteering Helped Me Embrace Spina Bifida

2019-08-08 Posted By Jenna Reed-Cote

I vividly remember my very first shift at the Spinal Cord Clinic six and a half years ago. Believe it or not, just as I came through the doors and saw all the patients in the waiting room, I suddenly had a crisis of confidence. Why did I think that I was right for the job? Because I had Spina Bifida like most of the kids there? That couldn’t be enough! I nonchalantly (but quickly) wheeled to the bathroom to calm myself down, trying to tell myself that it’d be ok and that I’d find my spot on the team. Lo and behold, it was the patients and their families who ended up inspiring me and pushing myself (no pun intended) to be someone they could turn to celebrate, problem-solve and even grieve with.

I’ve gotten to watch kids grow up, start talking, gain their independence and pursue their dreams. I’ve gotten to watch parents not only cope with the reality of the health challenges their child(ren) face but completely embrace who their child(ren) are and give them the confidence to embrace their uniqueness! I’ve seen helmets with “Under Construction” written on them (hilarious!), parents getting creative and literally building new equipment that wouldn’t simply allow their kid(s) to participate in life but grab it by the horns and forge new paths (and much more). In fact, today I got to see a video of patient, whom I’ve known since she was little, wanting to take the tippers off her chair and really practice pop-a-wheelies. So, her mom put her helmet on and let her rip!

Every shift has brought something beautiful to my life. To be quite honest, this opportunity has allowed my soul to be reignited, even without my realizing that it had all but dimmed. I’ve excitedly told my mom after so many shifts about these kids who just had the biggest spirits, unfazed by how they looked getting from point A to point B (whether by scooting, crawling, wheeling, or walking with braces). I was so blown away by this, having gotten so self-conscious over the years about how I was perceived in my braces and chair. Mom told me that I had actually been the same way, once upon a time, and that shook me.

I realized that if there aren’t people in these kids’ lives who are devoted to keeping their spirits strong, they too could find themselves slowly losing that confidence and joie de vivre. From that point on, I was determined to be one of the people in their lives to reinforce their ability to embrace trying new things. They needed to know that just because it may look different from how others did it, they should never feel like they couldn’t count it as a win. And let’s be real here - confidence has an incredible way of making what may seem like weaknesses and limitations melt away. I’ve made sure to fawn over new braces with cool designs and new wheelchairs, I’ve done races with them when they’d practice walking or wheeling, and I’ve shown them pictures and videos of me doing karate with my braces and wheelchair (not to mention, Tough Mudder). I wanted them to see it’s possible to feel proud of your accomplishments - without putting yourself down because of how you look doing what you love (of course I’m still self-conscious every once in a while, but we’re all both a masterpiece and a work in progress).

Before the end of my shift I did speak with the staff about finding a graduate of the Spinal Cord Clinic to be the next volunteer (or anyone with a spinal cord injury or spina bifida). More than ever, we need to see ourselves reflected more in society to know that so many things are possible; it’s incredibly scary to forge new paths, but always helps to feel like we’re not alone in our adversity.

I am so incredibly honoured to have been a part of these families’ lives all these years. I know some parents follow Phoenix Attitude and I hope I get updates on how my lil’ munchkins are doing!

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“Overcome the notion that we must be regular... it robs you of the chance to be EXTRAORDINARY ”
Uta Hagen
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