Inside the fishbowl

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child – you know the ones, they’re always so angry, and either grossly overweight or carnie thin, with bad hair, outdated make-up, cheap clothes and did I mention the angry?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.

 

Onward.

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  • Nat

    Beautifully written, as always Kim! I take my hat off to you every day…

    • http://www.allconsuming.com.au allconsuming

      Oh you.

  • http://www.travellersyarn.wordpress.com Ingrid

    Bought tears to my eyes! So much more moving than “welcome to Holland”.

    • http://www.allconsuming.com.au allconsuming

      Welcome to Holland makes me so fucking stabby. And yet it’s concept is bang on. Probably why it makes me stabby. Stupid Holland.

  • http://www.edenriley.com edenland

    Beautiful words, Kim.
    edenland recently posted..Picture This.

  • http://www.diminishinglucy.com Lucy

    You make me cry. Am printing this off for a friend and I know she will cry too. You echo a lot of her thoughts. xx
    Lucy recently posted..Fairground attraction…

    • http://www.allconsuming.com.au allconsuming

      Thanks Lucy – will I see you at DPCon?

  • http://www.baby-mac.com BabyMacBeth

    You’re a fucking legend, that’s what.
    BabyMacBeth recently posted..Pins & Kneadles

    • http://www.allconsuming.com.au allconsuming

      Oh right back atcha sunshine.

  • http://the-accidental-housewife.blogspot.com.au/ The Accidental Housewife

    Beautifully explained.

    But a question (from someone with no experience in the matter) did you feel like you were in a fishbowl when you at the lunch with the other mothers in a similar situation, or was it a brief reprieve?
    The Accidental Housewife recently posted..Shhhh… It’s Sunday

    • http://www.allconsuming.com.au allconsuming

      A reprieve. In fact I think that is one of the reasons being at Oscar’s School of Awesome is what it is – I know for me I don’t feel like a lone fish anymore. Bigger bowl, more fish. It is often the isolation of being the only one with a special needs child that can truly mess with your head. To have friends and an environment where you are with ‘like kind’ most definitely has its place and importance in my life.

  • http://mylittledrummerboys.blogspot.com/ Trish

    Beautifully written Kim , may Oscar keep showing you how awesome he is running his own race.
    Trish recently posted..Keep Calm …

    • http://www.allconsuming.com.au allconsuming

      I really like that idea – that Oscar’s running his own race. Nice.

  • Kill

    I am sure Aunty Barb would disagree with you about the clothes, makeup and maybe anger, but on the hair and weight I’m not so sure. And I am all those things without a dodgy chromosome kid. Can I claim it’s to keep you company?

    • http://www.allconsuming.com.au allconsuming

      Bwahahahaha – still chortle every so often about the dragged through a bush backwards comment made at Niamh’s christening. Too freakin’ funny. I think many of us chose to channel the anger elsewhere. Thank goodness. And yes, of course it’s to keep me company. Because you are selfless and generous like that.

  • Linda

    inspiring!

    i am guessing you had your reasons for removing the option for your readers (and members of Oscar’s fan club) to make a donation in support of Team Oscar and his School of Awesomness. (see i notice these things)

    however, would you consider putting up a link or page that would allow us to be part of the cause by making a financial contribution to Team Oscar?

    if you removed the link because of the tutt-tutting of ‘those who sit in judgement of others’ – I say to hell with those wankers.

    • http://www.allconsuming.com.au allconsuming

      I did, because I felt ‘bad’. And then we had a week where there wasn’t money for food and I was all, that was stupid (b/c it would have paid Oscar’s school fees that week and we would have had money for food, not me using money from here to buy food. GAH!). But now I can’t seem to find on PayPal how to get the button back. Also filed under: Idiot.

      • Linda

        until you kiss and make up with paypal how about a homemade dodah linky thingo on your side bar with details of how we can make a direct deposit into your nominated bank account?

        paypal is the devil’s work as far as i am concerned – we have exchanged many bad, bad words….well actually the bad, bad words have all come from me – ever tried to communicate directly with them…off on a rant now…also filed under: Idiot.

        besides i don’t actually see it as a donation…more like paying a voluntary subscription for the pleasure and entertainment your writing provides.

  • http://river-driftingthroughlife.blogspot.com river

    I think it’s wonderful that this teacher “gets it” AND made the rest of the staff watch the movie too.
    And after reading this, I’m of the opinion that this movie should be circulated around all schools with compulsory viewing by all staff members required. It would make such a difference.
    river recently posted..a little closer to the lighthouse

  • Denyse

    It makes my heart sing to know the wonderful work performed by people in schools is making a difference in your life. And in Oscar’s. So good to hear that he’s gone to a friend’s house. Kim, never ever forget you have people who care for you A LOT. And want to help in practical ways. Take care… Banal I know but I mean it. Denyse x
    Denyse recently posted..Survey of Parents.

  • http://n/a Susan

    Well, well, what an amazing way of explaining how you feel, who you are, when you cry and what a wonderful life you do have with Oscar. I am the better for loving you and having a little part in your life with all your boys!

  • http://mymummydaze.blogspot.com Fiona @ My Mummy Daze

    Wow, such emotive words, articulate words. I’m so glad your school was able to celebrate your strength and challenges. Fi xx
    Fiona @ My Mummy Daze recently posted..The 52 Week Project: playground fun