R A R E
I must admit the words “Rare Disease” don’t exactly feel right. Yesterday was world Rare Disease Day. I’m all for awareness, I’m a passionate advocate for our children – but rare yes, disease no.
I get it, it’s the medical term for the conditions that our children have. Yet I wonder how much energy I’m placing into keeping her boxed into these words and worlds, when she is so much more.
And that’s just it, that is exactly the posts I’m reading on ‘World Rare Dis-ease Day’ – it’s families highlighting that yes their children are rare, but they are so much more. It’s powerful and honourable.
I’ve been conflicted many times on how to share Chiara and her story with the world.
After all, in many cases it’s not my story to share. It’s hers and I use my intuition, our silent conversations and deep connection to do just that.
Labels naturally form an important part to educate, create awareness and build a better world for our children:
“special needs”, “polymicrogyria”, “microcephaly”, “cerebral palsy” “developmental delay”
Yet something is still bugging at me, trying to get my attention.What is it that I want the world to really know?
What is it that is so far beyond a medical label?
That our warriors help bring out the RARE in us all. That part of ourselves that perhaps lay dormant, had we otherwise never met someone so rare. I’ve witnessed this hundreds if not thousands of times with Chiara and the people we have crossed paths with, the way in which she opens up a part of them that is also so beautifully rare. It’s not often you see people, strangers moved to tears, share their personal stories.. it wasn’t until Chiara came into our lives that we got to witness so many other peoples’ ‘rare’.
So here’s to honouring all the rare warriors in the world and the beautiful impact they have in creating rare in others.
This photo was taken at Government House ‘Children First Foundation, Chiara connected us from very early on to wholeness. On a side note, I’d like to mention Moira Kelly an incredible humanitarian that you may know from Krishna & Trishna (Conjoined Twins) , brought to Melbourne by Moira Kelly, who discovered them in an orphanage. She helped the girls who were born with their skulls and brain matter fused, and had just a 25 percent chance of survival, get a life-saving operation in Australia. She’s a guiding light for so many and I’m so thankful I paths crossed, not here at Government House, in fact at a cafe in Eltham where she was out to dinner with her children. I hugged her, cried and thanked her.
In witnessing her children with rare conditions, and her just as equally rare response… to adopting many children.
Rare is beautiful, see what I mean.
See what rare can create.
In seeing their rare, it helped us to understand ours.
Humanity grows stronger when we all honour each others RARE.
Proud Mum & Advocate,