Home Is On The Horizon

September 18, 2018

So we're nearly three weeks into September, and I’m still over here wondering where the summer went! These last 2 months have been a blur and a lot has gone on as we look ahead to St. Louis.

 

On the fundraising front, we hosted raffles, a massive community yard & bake sale, Epicure parties, and a benefit BBQ. There were also many early Saturday mornings spent at Farmer's Market booths, friends who helped out by selling their arts, crafts and handmade jewelry - as well as a lot of outreach to local businesses in preparation for our October events. It was a fast-paced summer that also had it's fair share of roadblocks too, but when all was said and done, we closed out August by reaching two-thirds raised toward our fundraising target thus far. I genuinely could not have been more grateful for the small army of friends and family who chose to be by my side without hesitation during this time!

 

 

On a personal level, there was a worrisome development with my mobility, which threw me into an unexpected funk. Unfortunately, it’s just been one frustration after another with my left knee. For months, my team has been doing everything they can to manage the pain that has been seriously testing my patience. The problem is spasticity-related: my hamstring muscles have simply become too tight and too short. They’ve pulled on the knee joint for too long - twisting it inward and locking it in place - so there’s just not enough range of motion left, for it to bend or bear weight in a dependable way. As a result, I have been having an incredibly hard time working on the basic physical movements and strength-based exercises needed, in order to maintain my candidacy for SDR surgery as an adult. I can’t quantify just how stressful this has been to experience - especially at this point in my journey - when I know what's at stake. 

 

So in late July, I reached out to Dr. Park to update him and seek his advice. In the end, my job is to keep doing exactly as we have been: massaging, foam-rolling and stretching the muscles in my legs - to try to relieve their strain on the knee - until I can get to St. Louis. However, he was also clear that I’ve got to keep any wheelchair use to an absolute minimum, and must continue walking as much as possible - to maintain muscle mass and function. (Of course, this is much easier said than done since there’s no way to remove a knee from the equation when walking!)

 

I am also looking at a probable change in the trajectory of this journey. Initially, it was uncertain if I'd need my hamstrings lengthened in the future, to stretch them back to the length they need to be.. But given where things are at, it’s now likely that this uncertainty has become certain. As such, this minor "PERCS" surgery as it's called, will be a necessity at some point following SDR. The prospect of having a second expensive operation in St. Louis was hard to digest because it presented me with an additional set of fundraising and logistical challenges that will need to be figured out in the coming months. So, if there was a time where the wind got sucked out of my sails on this journey, the month of July was definitely it!  

 

 

Yet, there were still bright spots on the horizon, too. I had the opportunity to attend the 3rd annual SDR Ontario picnic in Etobicoke in August, and it was so nice to finally meet some of the families in person who I’ve known online since the start of my journey. There’s something special about gathering together with people who have traveled your specific path and who know first-hand just how crazy it is. I’ll be writing more about this meet-up in a future blog...but it was a good day, and I’m most happy that I was able to share it with my cousin who drove all the way from Owen Sound to join me!

 

 

To wrap up the summer, the last couple of weeks were spent working on our 3 upcoming events in October. It seems fitting that next month will be equal parts hectic and special - as October also marks the one-year anniversary of our fundraising launch, which was also a whirlwind! There’s still so much to do to pull off these events, but I’m most excited to just have the chance to be HOME with my family and friends in the next few weeks, since two of our fundraisers are back in Muskoka where I grew up.

 

With Thanksgiving on the calendar too, it makes me so incredibly teary-happy to know that I’ll soon be able to hug the heck out of the ones I love! I haven’t been home since Christmas, so this precious time together is long overdue. I truly can't wait because there is so much to catch up on, some special memories to make... and just so much to be thankful for, together.

 

After such a long last 11 months of fundraising...this is exactly what's needed. The countdown is on to those magical Muskoka hugs! And so until then, I'm staying focused on all of the good things to come! 

 

 


 

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