2018 Polymicrogyria Family Convention Denver, Colorado
I will start with thanking four incredible women, who without their hard work and dedication behind the scenes at PMGA Awareness, none of this would have been possible. Robin Hudson (CEO), Natalie Fregoso (Vice President & Treasurer), Marissa Zamora (Secretary) and Katie Cordes (Director of Event Planning and Communications) thank you for creating an incredible convention, that touched and transformed the lives of many.
When I received Robin’s email asking if I would be interested in speaking at their conference in the USA, I was incredibly humbled. Let me quickly rewind and share with you how I became connected with PMGA. Not long after Chiara was diagnosed, I was searching and scrolling for that needle in the haystack, some cure or something positive that would change my daughters fate.
Then I found the Polymicrogyria Awareness (PMGA) website and I cannot tell you just how uplifting and supportive it was, especially at a time when we felt most isolated and scared. Their website is full of hope, community and education and created by real life families with real life experiences. It really helped to demystify what polymicrogyria really was. What an incredible gift for a mother, father who has just received their child’s diagnosis, to have this information at their fingertips.
It was such a refreshing change to the other sites out there on Polymicrogyria (PMG), with medical jargon that spoke about PMG like a scientific experiment, devoid of any connection to how it would impact the reader. Yes facts are important, but ‘retardation, lethal, short and suffering life’ were not facts that empowered anyone.
I was so grateful, that five years later I could offer something to give back to this incredible organisation, who helped my husband and I through that post diagnosis shock and despair. If you were to tell me at the time of Chiara’s diagnosis that five years later I would fly to the USA to speak about the incredible life we have created because of Chiara and her diagnosis, I would not have believed you. Life is so mysterious like that!
So with some careful preparation and logistic planning with family and incredibly supportive parents and in-law’s, I was able to reply with a massive YES and THANK YOU, I would love to be their keynote speaker for PMGA 2018. A huge amount of credit goes to our parents, who without their support with the girls, we could not have done this.
So the next thing I knew, we were at Melbourne airport bound for Denver Colorado. Yes, there was an enormous amount of work that occurred before that, but I’ll spare you the details!
Day 1 of the conference, was simply incredible. It all started with opening ceremony and listening to Robin and Rick Hudson welcome us all, I knew this was going to be a life changing event. I then stepped up for my keynote presentation (more on that in the following blog update), then we moved into Tom Haakers presentation and Name Ceremony. Now talk about synchronicity, the story about how Rick Hudson (husband to Robin CEO of PMG Awareness) met Tom Haacker a professional race car driver was nothing short of serendipitous.
Rick was a police officer the time, when he got a call out to a lady who had been attacked by two pitbull’s. Rick was first on the scene and as you can imagine, it wasn’t pretty. The lady who was attached was Tom Haakers mum, he was so grateful for Rick and his help, that he asked him and his family over for dinner. What flowed on from their chance meeting, was so moving that most of us were in tears!
Tom got to meet Rick, Robin and their warrior son Sean who has Polymicrogyria (the same brain condition as my daughter Chiara). Tom was so moved by their family and the challenges they face, that he wanted to do more. So he went over and above and helps promote PMG on his actual race car, and he didn’t stop there. The names of all the children affected by Polymicrogyria (both past and present) appear on the race car. Incredible right!
The Power of the PMG Community
So when he races around the track at dizzying speeds, with all those names of children who live with enormous challenges – can you imagine the extra power of the car. Well he crosses the finishing line first, so that gives you an idea. At the day of his presentation, he brought in the race car so families could see it. Then families of children whose names weren’t on the car, got to personally place the names onto the car themselves. It was so beautiful and moving and made me realise how much good can come from so much challenge. Then to top of this magical meeting of two special families, Tom’s daughter spent time with Sean (who has Polymicrogyria) as she was growing up. Guess what profession she chose?
Yep, you guessed it – to help work with children and families with special needs. She’s a light to so many families and listening to her talk, reminds me of all the other angels on earth who have careers in supporting disability.
So with a few tears and laughs we moved through the day to Dr Dobyn’s presentation, Medical Geneticist & Neurologist. Now we’re talking brains! It was wonderful to see him share his incredible knowledge with all the families in the room and was able to answer questions from many of us. I’ll be honest the technical talk went well over my head, the scientific structure of the brain is a little confusing to say the least. C’mon be honest, are you like me and do you nod along as if you know what they are talking about? Whenever professionals show me images of the brain and point out structural changes, my eyes glaze over. I just want to see the part of the brain that can be re-wired, healed, cured. Surely that’s not too much to ask?
We then heard from some family stories, again tissues were required. What astounds me about hearing from other families is the incredible similarities we all share. That is by far one of the greatest and most powerful gifts we receive as parents in this journey. The ability to connect with another human being, whom we’ve never met before – yet we seem to bypass all the small talk, all the getting to know you talk and arrive smack bang, in the place of the heart.
Mauro and I were both in tears, deeply impacted by the stories we heard and the fact that our journeys are so similar. The empathy, the compassion and the understanding is something we all share.
I had conversations with so many people after the first day of conference, real human AF conversations about potential, love, courage, grief, fear and wonder. It didn’t matter if it was with a male, female, different religion, background, tradition – we connected due to the fact that we shared common ground and more than that, the fact that what we shared was dearly close to our hearts – our children.
Something magical happens in this process of profound connection, when we share our vulnerabilities about how children and their diagnosis… we gather even more support, greater understanding and our community grows stronger.
The future is bright!
I used to worry a lot about ‘the future’, but now after attending the PMGA conference and listening to families share their stories, to the team at PMGA, to the chance meetings of a famous race car driver and so much more. I know without a shadow of doubt, the future is bright. We will continue to connect, grow and support one another and our children. The world is changing, I saw it with my own eyes on this first day of conference.
Let me tell you day 2 – gets even better! We met two incredible human beings… Schuyler and Robert from Fighting Monsters with Rubber Swords. Mind blowing and massive heart connections, but that’s for a whole other blog post (part two!).
You want to know what happens when an American and Australian play snooker with a few rounds of Fireball? You’ll have to wait for part 2 or 3 for that one ; – )
I’d love to hear your thoughts too, feel free to leave a comment below.
Proud Advocate and Mama,