One year ago today I launched the fundraising initiative that would help me find my way to St. Louis for SDR surgery. This was one of the scariest, most nerve-wracking yet empowering projects I had ever chosen to tackle in my life.
One year ago, I didn’t know how to help people understand the reality of aging with CP, which had brought me to the point of pursuing SDR. I didn’t know how to navigate the early criticisms directed at me before we had even gone live, for daring to dream so big. And I didn’t know how to quell the frustration I felt when able-bodied strangers fiercely told me to forgo fundraising altogether and just accept my decline to a wheelchair, because as they said "that's just life!" Ultimately, I had no idea how to reconcile the anxiety I felt, knowing that my future independence and ability to walk would ultimately rest on hope, a lofty fundraising goal, and the kindness of others to help us achieve it.
It was all so scary and overwhelming.
Although I didn’t know how to tackle these hurdles, I did know this: I no longer wanted to sit on the sidelines of my life, watching my mobility deteriorate while there was still something amazing and scientifically sound I could do about it. So, the only option in my mind was to find my courage, launch the fundraiser and create a way forward to St. Louis, no matter how daunting the task seemed.
12 months later - to the day - it gives me such peace of mind knowing that I’ve been able to do just that. From one hopeful burst of courage, a community was built that slowly helped to turn my dream into a reality. Together as a collective, we’ve pulled off 14 different fundraisers (with 3 more to come this month) and raised close to $65,000 dollars thus far to help with the costs of my SDR and PERCS surgeries in St. Louis. That’s no small feat!
We’ve tried to initiate a dialogue around what it really means to live and age with the most common physical disability in this country...that is still somehow incorrectly assumed to be just a childhood affliction. And, we’ve also begun to create valuable advocacy around SDR for adults in Canada - for which the need is overwhelming. There’s still so much to do on this awareness front, since mine is just one adult story in a sea of others that need to be told. But tonight, I simply want to pause in this moment to appreciate how far we’ve come.
I’m so grateful for this journey - for the people it has brought into my life - and all that it has taught me this year. I’ve learned how empowering it can be to lean into uncertainty, to believe fully in the magic of beginnings, and to trust in moments that I can’t predict the outcome of. Not a single moment of this has been easy or comfortable, but all of it has been life-changing.
To everyone who has lovingly been part of this past year, thank you for encouragement and support..and for helping me to believe that with hard work, a little bit of luck and a lot of courage... big dreams really can come true!