Last Saturday, our SDR Ontario community gathered at Variety Village for the 4th Annual Summer Picnic. It was a special day for us as a group and it was filled with some extra-special moments and milestones for me personally, too. Before touching on the event itself though, I want to frame the day just right, so that you might see why it was so significant for me on this post-op journey.
My Saturday started off bright and early at 7am. In order to get to Scarborough, I first needed to travel into downtown Toronto by bus. Easy-peasy for most...right?
I'm still working on this whole walking-since-SDR thing, my outdoor endurance and balance still leaves a lot to be desired and I was only just 4 months and a bit post-op at the time, which is still very, very early in the process for me. (There's also the not-so-small detail that the last time I even had the mobility needed to safely travel out of Niagara on my own, was FOUR full years ago!) So on a scale of "Doable"... to ..."Can I Even Right Now?", this was my biggest challenge since surgery, yet.
With some serious anxiety in tow, off I went. The moment I stepped outside to get going though, I slipped going down the stairs and smashed my back off of the front steps. (Ugh.) Then, the sky opened up and it began to pour rain. (UGH! x2) Sore, soaked and slightly rattled, I made it to my stop though...got on the local transit bus... and before long, I was waiting downtown to board for Toronto.
Soon after, I watched our Coach Canada driver tuck my walker into the undercarriage, and said a few not-so-silent prayers that it wouldn't get bent or damaged while jostling against other passengers' luggage. Seeing as this was bigger than anything I had conquered since March, I brought it along just in case, while hoping my trend of not needing it would continue! Better to be safe, than sorry, afterall.
Slowly and carefully, I then made my way up a few steep, slippery steps with my cane and took my seat. It wasn't an ideal start --but I was on my way. Phew!
As we drove toward Toronto that dark and rainy morning, I caught myself tearing up several times. Partly because I worried and questioned whether this was actually safe for me to do at all...but mostly...and simply... because here I was, doing it... on my own!
(Unless you know what it's like to lose - and then years later, start to regain - a big part of your independence as a young adult, nothing that I write here can possibly capture the significance of what moments like these ones feel like. But I assure you -- they're big, and they're overwhelmingly special.)
To all of the other passengers who noticed, I probably looked like a typical tourist as I snapped a photo of the CN Tower from my window seat that morning. But I didn't care. I smiled to myself and took it anyway as the sun peaked out, knowing that this version of the photo would forever be symbolic to me, more so than any of the others I'd taken in years' past.
Once we arrived in the heart of the city, and I waited for my walker to be unloaded, my nervous butterflies came back full force! Could I make it through crowds of busy, distracted people who are each in their own hurry? Could I get where I needed to be on foot - with walker, cane and backpack in tow - in the pouring rain...and not fall? (Because, yup...the skies opened up for another downpour as soon as we parked. Sigh!)
Cue questionable decision #2 of the day!
As it turns out, yes, I sure could! 💪
(Keeping it real though, there were a few tense moments...because post-SDR, every curb in existence might as well be 10 feet tall, and people who don't hold doors open when they see you coming just two steps behind? They're jerks. Just saying!)
Eventually, I met up with my dear friend Nonna and we were on our way to Scarborough. Due in part to an unexpected change in plans, and the busy Toronto traffic, we arrived at Variety Village with just 9 minutes to spare, for me to make it from the entrance, to where I needed to be! Yikes!
We were especially fortunate to have Dr. Park visiting us from St. Louis for the picnic and as part of the day, he held individual follow-up appointments for his patients in the morning, to see how we were each progressing. It was a tight schedule as he had many patients and families to see in a short period of time. So having just 9 minutes to make the trek in for my appointment? It was madness! 😂
Although I would've loved to have the walker with me so I could've quickly zipped around inside, there was no way I was allowing myself to show up with it, to see Dr. Park. I hadn't used it indoors in months and had worked too hard, to arrive on this day, in the same state I had been in when we left St. Louis. So the walker stayed put with Nonna, and I made a beeline for the building.
(This was probably my 3rd questionable judgement call of the day since I still walk much slower when just using the cane, but this was non-negotiable in my mind...so off I went, booking it as fast as my wild jello legs would allow!)
I had just a moment to change before seeing Dr. Park, but when I walked into the room, my hurried state quickly dissipated and I was reminded of how I felt the day of my pre-op consult with him: calm and content, knowing that I had done all I could to get to this point, too.
In all, he was very pleased with my recovery from surgery. To be nerve and muscle pain-free from the procedure itself at my age, this was a huge success in his mind. For the heavy numbness in my legs to have fully resolved this quickly is a fantastic outcome, too... and to only have the tiniest traces of topical numbness on the skin of some parts of my legs, is quite rare at this stage, as well.
He then checked my feet for any detectable signs of clonus (the tell-tale sign of returning spasticity, which can happen for those of us who are older and more affected by CP). When it couldn't be found, we were both especially happy with that! From there, I discussed some of my current roadblocks from a movement/rehab/recurrent joint pain standpoint, and we decided that it was still the best plan of action for me to return to St. Louis for my 6 month follow-up visit in October. At that time, I'll have the opportunity to check in with him again, to keep an eye out for that clonus, and also to meet with the Orthopedics team to discuss phase two of this process, which will hopefully give me more clarity on the exact next steps I'll need to take.
With enthusiasm, he also reminded me to keep stretching and exercising daily, and to continue on as I have, using vibration plate therapy and vibration-based massage too (more on these modalities in a future blog). At this point, I couldn't help but laugh a little, ...because to know Dr. Park is to know that he regularly tells EVERYONE to do these things daily with conviction, whether you have CP or not!
Our review was brief, yet a confirmation that I'm mostly where I need to be for this stage. He gave us suggestions for things to focus on for the next 8 weeks, too. So, with that, I'll continue putting in the work at PT, and will look ahead to October in due time.
After my appointment, I met back up with Nonna and enjoyed the afternoon introducing her to a few of the dear families I've become especially close to on this journey. Once again, unless you've been down this road, I can't really put in to words what it's like to be able to thank those special people in person who were so critical in making it possible for me to get to St. Louis in time. To be able to hug them and explain sincerely that their kindness made every imaginable difference to me having my shot at SDR? What a long-awaited joy this was!
And from there, the day only grew more meaningful....
Before the picnic got underway, I was asked to provide the welcome address for Dr. Park. It was a special
moment for me to be able to thank him for making the trip up to see us for his first Canadian SDR visit, and I was grateful for the opportunity to speak on behalf of so many families who know first-hand, the difference he has made in our lives through SDR. After presenting him with a personalized and "very Canadian" gift, we enjoyed a beautiful slide show put together by a lovely SDR family from Woodbridge, and snacked away on a tasty catered lunch while snapping some special group photos, too.
It was a busy day...and one where I was frequently reminded of just how far SDR has come in Ontario since 2014. At that time, no one here knew that this surgery existed...and not one of us knew each other, either.
5 years later, looking out in the courtyard that afternoon, seeing 160+ people in attendance from across Ontario?
Knowing that the advocacy of THIS group pushed our government to start doing better for our Ontario kids with CP?
That more and more families across Canada are looking into SDR with joy rather than fear?
That 39 Ontario families have now forged their own path to St. Louis because they believed that a better outcome was possible? And, that I could count myself among them?
It was surreal to see and be part of.
Most meaningful of all, as the picnic wrapped up, Nydia and I were able to capture a special moment with Dr. Park. He didn't have to take a chance on either of us as his first Canadian adult patients - but he did - and we're both so grateful for that. He also doesn't have to further focus his career on advancing the research base for SDR among the adult CP and HSP populations. But he chooses to, because he's among the select few surgeons world-wide who recognizes just how critical this surgery is for us, especially. Unspoken between us is the understanding that hope is powerful... and that living spasticity-free at long last is even more so, too!
In the end, the day was full. Full to the brim of scary yet oh-so-empowering firsts since surgery. Full of opportunities to conquer self-doubt, and for me to know with certainty that I AM progressing and doing the best that I can with this rehab. Full too, of hugs, updates and encouragement shared between friends who were once strangers, that I now truly can't imagine doing this life without!
So when I finally navigated my way back out of Toronto for the return trip, and walked up my street to get home that night (14 hours after I first left) I didn't mind one bit that I was tired beyond description, or that I slept most of the following day away.
After almost 5 months on this journey and a particularly challenging August, this past weekend was exactly the boost that I needed.
To all of the families who made it out to Scarborough, thank you for sharing your stories and your afternoon with me.
I can't wait to see you all again next year!