I was at a lunch on Friday put on by Oscar’s School of Awesome to celebrate women with a particular nod to those of us who are mother’s to kids with dodgy chromosomes or some other label that indicates their load will be a little heavier and wonkier than most.
It’s not something I dwell on that much any more but Friday made me realise that is simply because I’m now quite used to wearing the coat that is being mum to a kid with special needs. It was really nice being in a room packed with (295 no less) women and feeling celebrated and appreciated. It was not something I had expected.
Our Principal talked about a series of short films made by students two years ago and the sister project of a documentary following the students making the films. I know, SO post-modern. (I don’t even know what that means.) She described how, in the doco, families of the kids were also interviewed and that their honesty in what it was to have a child with special needs took her breath away. She explained that while she has worked in special education for more than 20 years it was this that truly showed her she (nor anyone else who does not have a child with a disability) will never ever understand what it is to be the parent of a disabled child. She then hijacked a staff meeting and made all the staff watch it. All the wondrous, committed, beautiful staff. She said the silence in the room was immense.
I can not tell you how validating that was to hear.
It explains so much. Why she is such a tireless advocate for our kids. Why every single member of staff at the school live and breath our kids and how to help them be the best they can be. Why that place is a place of daily miracles.
One of the things that came from the doco was the concept of being in a fishbowl, that you can swim around and see out and still be a part of everything but there is always this barrier between you and the rest of the world. Similarly people can see in and engage with you but still that barrier is there.
It is such a good way of describing my life since becoming Oscar’s mum.
I remember when we were first told of his diagnosis and internally railing against it. I did NOT want this for my life. I was NOT going to be one of those women, those mothers you see with a disabled child – you know the ones, they’re always so angry, and either grossly overweight or carnie thin, with bad hair, outdated make-up, cheap clothes and did I mention the angry?
I know, even I would have smacked myself back then.
But here I am, swimming around that god-damned fish bowl, regularly head-butting the glass, grossly overweight, no make-up, cheap clothes, dubious hair (it needs a cut) and on occasion very very angry.
I cried on Friday.
And then life went on.
Oscar went over to a friend’s place today to hang out. A first.
His voice started breaking this weekend.
He made me laugh. He made me cranky. He gave me kisses and cuddles. He asked me many questions many times over.
My life will never ever be as I imagined it. Nor his.
And that is OK.