Today, my heart is in St. Louis

December 8, 2017

This morning my mind and my heart are in St. Louis, with this lady. 

 

 

Nydia and I "met" earlier this spring when she had just discovered SDR surgery and learned of Dr. Park's life-changing work for those with spastic Cerebral Palsy. I remember feeling both excitement and relief that another adult from Canada was now familiar with SDR and that she was starting to get curious about it, too. Excitement because she lived not too far away I soon found out, and relief, because until that point, I was the only Canadian adult trying to navigate the system to apply for and get approved for SDR in St. Louis. The system here in Ontario didn't make it easy, and in fact made it deliberately difficult. 

 

My path led me on several lengthy detours with lots of red tape and unnecessary hurdles, and it took over 10 months just to finally get the documents I needed to apply. BUT I was able to navigate these last steps in my approval process knowing that I wasn't alone in it anymore. Nydia's path from discovery to approval zoomed along much faster than mine, but as fate would have it, we received our approval for this surgery on the very same date - July 14, 2017. It's a date I won't ever forget. Together, we became the first adults from Canada to be accepted by Dr. Park's world-class team. The significance of this is not lost on me.

 

I knew from the moment I discovered SDR that I wanted to pursue it, and in doing so, help other adults here learn that there ARE other options to managing the heavy, hard and scary aspects of life-long spasticity that are seldom discussed, but lived EVERY day. With SDR surgery, a life lived in fear of real physical decline at a young age didn't have to be the expected reality anymore. I wanted to do all that I could to help other adults learn this, just as I had from all of the Ontario children who came before me.

 

After months of chats, texts and exchanges online, I was able to meet Nydia in person in October, and give her a big hug. I can't put into words what it means to connect with someone who is on your very same path. Who knows your struggles, who shares your same hopes and convictions for a brighter future....because they live them too. And who knows how hard it's been to get to this point, and how lonely that road can feel at times.

 

Today, Nydia receives her SDR surgery. Today, her life changes in an instant. Today, she no longer has to live with the struggle of spasticity. Today, she receives the gift of a life-time. I'm overjoyed for her. I'm delighted she was able to learn of and have her surgery so quickly.

 

My path is a different one. It will be longer as this won't happen for me without significant fundraising efforts in 2018, but I can tell from our exchanges this week when she arrived in St. Louis, and I can see from her posts and photos this morning, that the relief and joy in Nydia's eyes is very, very real. And that gives me hope and fires me up that much more for when I will have the opportunity to travel in her footsteps. I don't know how this will all come together....but I have to believe that it will, somehow. I need this surgery just as much as I want it. And there is such comfort in knowing that another special lady understands exactly how that feels.

 

Nydia, I'm cheering you on and wishing you all of the best this morning. You're in the best hands this world has to offer, and I can't wait to follow your progress in the weeks and months to come. Thank you for traveling this journey with me, for your friendship and for your support over the last several months. You've got this, and you're going to do just fine. 💚

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