Determined + Courageous + Strong & United.
What a powerful theme for the PMGA conference and one that I started to witness unfold more and more as the hours went by. I was really excited about day two, because Robert & Schuyler from Fighting Monsters with Rubber Swords were presenting. A dynamic duo who together have paved the way forward for so many of us. Schuyler shares the same PMG diagnosis as Chiara, so both Mauro and I were so keen to meet her. Imagine for a moment, if you will, the feelings Mauro and I experienced when meeting Schuyler. In some ways it was like a flash forward to a future possibility, a projection into what life may look like for Chiara.
I watched my husband try to hold back tears, the way he holds back the anguish, the pain and the confusion of Chiara and her diagnosis. I watched the way he was so moved by a beautiful father and daughter who had experienced such a similar journey as his. I watched him look at Schuyler in wonder, as she stood on stage and presented to a room full of 200 + people through her communication device. I saw every tear, but more than that, I felt it – because we are still so confused about Chiara’s future. We don’t know how many years she has on this planet and with her severe physical limitations, it adds to a whole new level of unknowns. Yet hearing from Robert and Schuyler through their powerful presentations, we felt a whole new world open up of limitless potential.
The Power of Potential
And there she was Schuyler a beautiful young, determined, fun and intelligent woman, standing on her own and showing a room full of parents what is possible. It was remarkable and I felt so incredibly proud to see it with my own eyes, her potential is unshakable – she is wonderful.
I‘m fairly new to this journey, in comparison, but I know enough to understand how her parents dedication and resilience have shaped the woman that stood before me. All the things people never see behind the scenes of raising a child with additional needs, that stuff is what makes us who we are and I’m so grateful for Robert, Julie and Schuyler for sharing their journey with us.
It’s been so refreshing to read words from a Father’s perspective and he definitely has a way with words. I was instantly drawn to his humour and heart and I could see so much of Mauro and Chiara, in Robert and Schuyler’s relationship. I highly recommend that you read the book ‘Fighting Monsters with Rubber Swords’ it’s like a parallel universe for us, and in particular Mauro as a father. Not long after Chiara was diagnosed I recall downloading Robert’s book, I began to read it but I didn’t finish it, my mind was too full in the early days. It wasn’t until I was flying back home from Colorado to Australia where I read the book cover to cover at high altitudes, I felt like his words carried me home.
The Power of the PMG Community
There were many more talks from amazing speakers from Speech Pathologists, to CMV Specialists. The day was full of education, connection and yep you guessed it more tears. More and more families took to the stage to share their story. We become braver and stronger every time we connect with another family who walks a similar path.
The conference ended with a catered dinner and a beautiful dance show, cue more tears from this mama when I watched a young girl dancing so freely to an aucistic version of ‘Yellow – by Cold Play’. When I see physical freedom in the form of dance, I can’t help but wonder what life would be like if Chiara could move, dance, effortlessly….. free. These moments, the rush of blood to the heart, to stop it from breaking further. I’ve leant to live with this uncomfortable pain, that can spontaneously occur in any given moment, but I’ve lived through enough to know that this too shall pass.
I’ve also learnt to maximise times of celebration and that’s exactly what we did, we celebrated. An amazing D.J had us all busting out some crazy moves on the dance floor, parents danced and let go and the kids, well, they brought a next level amount of JOY! Throw in a few fireballs shots, a hilarious game of pool between Rick and Mauro and lots more banter – it was literally the perfect ending to an amazing convention.
For a moment I stood back and watched parents dance with their kids in creative ways, perhaps it was swinging the wheelchair around (Ryan, you win the prize for the best dancer!), or parents dancing together while holding their child and supporting their weight. Perhaps it was non-verbal children communicating louder than ever through their expression of dance. Whatever it was, it moved me to my core.
Thank you again to the PMGA Board of Directors, for creating a place that we could gather as parents on a mission to help their children reach their full potential. Thank you for reminding us to dance, play and have fun too!
Stay tuned to part 3, where I’ll dive deeper into my Keynote. Until then, I’d love to hear from you. What did the conference mean to you? Leave a message in the comments section below.
Proud mama & advocate,