Monday, September 24, 2012

Finding out your child doesn’t fit ‘normal’

  One area in which we’ve never had typical reactions has been the disability one. Reading a book of Deaf people’s stories has certainly driven home what i’ve always known-the husband and I are seriously weird in our blase attitudes to the differences in our Shorty. Like the husband said ‘All these people cry and grieve for their child. We just wanted to know what colours we could get hearing aids in!’

  But then there’s never been any doom and gloom. Upon counting fingers and toes at birth and satisfying myself that the gas hadn’t screwed my sight up any more than it is naturally, we shrugged it off. There’s video of us fanning out his hands, an hour or so after birth, exclaiming, ‘Aren’t they COOL!’ There’s never been much consideration of hacking bits of him off to make him fit in, just like a tummy tuck after having my twins was never considered for myself. Cosmetic surgery is cosmetic surgery in my head. It was a complete shock, the morning of his birth, to be told that if his extra bits had been discovered at the 20 week scan I would have been advised to terminate. I remember being completely pole-axed, clutching my perfectly healthy new baby to me, thinking that if events (and my views) were different, he wouldn’t be here at all, because of a ‘just in case’ view. Let’s get rid of him, just in case he’s not average! Kill off those differences!

  The strongest emotional reaction i’ve had was to the geneticist who delivered the diagnosis of his syndrome. As i’d already deduced with Dr Google it was most likely that one there was no surprise-except the surprise of him being such a bastard about it. Telling us our son would most likely be a vegetable for life, and not to have more children because they could be too, and wreck our life. Treating him like a liability. I should have gone with my urges and spat on him, I really should have. Especially now, considering our six year old bike riding, tree climbing, wrestling ‘vegetable’. And he got the syndrome wrong, too, by the latest assessment (three years ago, mostly because it really doesn’t matter what label they stick him with).

  But as I tell everyone I can (probably tiresomely, but can’t say I care), having a child with a syndrome is not a bad thing. Just a different thing. It can actually be a really positive thing, if you let it. Differences are so feared in our society. So many children are not even given the chance to live, with parents deciding they ‘couldn’t handle it’ and opting out. How many would make that same decision if exposed to real children and real parents who are handling their situation positively and joyfully? Rather than a bastard geneticist’s view? People take to Shorty instinctively, in a way they don’t to my other kids. They sense his happiness and contentedness, his perfect ability to live right now, his freely given affection and friendship. Qualities that adults practice and strive to obtain.

  Flawed? Or maybe even better off than the rest of us. It’s all a matter of perspective.


Amanda said...

Kelly, I love this post and couldn't agree with you more. I've been thinking a lot on this lately, how the world needs "normal" so they don't get uncomfortable. I'm learning more and more to embrace differences and have more of a "bring it on" attitude when confronted with people who feel a need to label. Love your style!! Hope you and your precious family are all well.

Tamara Kelly said...

Yep! He's definitely a vegetable: tasty, healthy and full of anti-oxidants! Om nomnomnom!!!

Kelly said...

Is THAT why i'm always tempted to chew on him!

Thanks Amanda! You're right, most people don't feel comfortable with difference-but when you learn that over 95% of babies with Downs are terminated at 20 weeks, you can see why. It's not something most people are faced with.