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The Cry of the Cat

Life’s hardest lessons teach us something about ourselves if we manage to stand reasonably firm against the grief and emotional paralysis that invariably accompany them. Not steadfast and stoic but reasonably firm. Stands to reason really. That which doesn’t kill you makes you stronger.

It’s not surprising that when our best laid plans - the sweetest dreams the shiniest hopes go astray we tend to be struck numb. I was. A direct hit. Straight to the soul.

My daughter got a dud ticket in the genetic lottery and was born with a chromosome depletion which manifests itself as a syndrome known as Cri Du Chat...the cry of the cat; a condition which visits about one in 50,000 babies and results from depletions or translocations of genetic data in the short arm of chromosome 5p.It wasn't evident initially but when a few worrying trends emerged at 6 weeks a shattering diagnosis emerged.

The prognosis in the available literature painted the bleakest of pictures. Severe intellectual disabilities... chronic physical defects...a lifetime of problems...nightmare freak show stuff.

We were devastated. The kid we had planned and speculated over for such a long time was suddenly not the one we had. Neither of us has ever been into fatalism, the futile politics of blame, but it hit hard.

The mysterious acceptance of "gods will" - the faith that sustains some people - wasn't relevant to us. It was too big to swallow, yet too insistent to deny. A collapsing, festering sense of grief which, for me, turned into rage.

I was reminded of an image in Bergman's film The Virgin Spring where the father, responding to the defilement of his daughter by a couple of bodgies, blindly took revenge on God by ripping a young sapling from the ground.

I felt just as helpless – a sickening realisation that none of our assets or capabilities...the best endeavours of our imaginations...the combined willpower of our desires or anything else at our disposal could change the reality.

I am reasonably practical when it comes to making and mending things. The bigger the problem the greater the challenge and, when prolonged concentration and strategies are successfully brought to bear, a suitably rewarding dividend.

But this was something I couldn't fix. Helplessness seethed for months.

The practicalities were manageable and Helen took charge of the necessities while I foundered in an ulcerating confusion...wandering the streets late at night hoping for something but knowing you don't find many miracles in the gutter.

Just more of the numb, impotent knot of nothing. The questions going around and around unanswered. You cut off its head and it grows another. There was a time I entertained the hope that the kid would die and save herself (and us), a life of distress. ..I was virtually out of control, consumed by futility.

That's how selfish and blind-alleyed my thinking became...even while our friends and families rallied strongly and offered as much buoyancy as you could hope for.

Looking back on the moment of truth and its repercussions - which I do from time to time - (every day), it seems a long while ago and a long way away.

Which it is. Time flies like an arrow...fruit flies like a banana.

You can't live like that because its not living but rather a kind of death.

That season of darkness was almost ten years ago.

Now, everything is a plus. She walks, she talks, she laughs and tells jokes and is so buoyant with life that if the people who wrote in those medical encyclopaedias could see her. they'd reach for the petrol and matches to ensure no-one else was wounded unnecessarily by the abject negativity of their prognosis.

Yesterday she brought home a commendation from school which cited her as a cheerful, well-behaved pupil and everybody's friend.

My heart sang. She has a life - a real, valid, sustaining life.

This is no miracle cure for Cri du Chat but there is a process that enables parents to accept, to adapt and draw sustenance from a damaged child. It might be called healing...I don't know.

Is she just managing to give a good impression of being a "normal" kid?

Copying, emulating, responding to peer group pressure for an acceptable approximation?

No, it reaches well beyond that. Hanne was never any less than normal, in her own terms anyway...in that she was and is, always herself – unique... original – taking from the world and putting back.

Those who don't know or can't understand are the ones unable to see just how normal she is. A bit slow? Sure...so what? It all goes in and it will all come out when you least expect it. Reduced in ability? I suppose so. Defining these things can only be done with a mixture of realism and acceptance rather than straight comparison or envy. But its never been a matter of comparison even though we are obliged to measure everything she does against "norms" and graphs and statistical averages.

I prefer her the way she is...different. Not that I'd hesitate for a second if some Faustian deal magically arose offering her a better shot at life in the 21st century.

All those people in jeans commercials, bourbon and basketball shoe ads, pushing themselves to the limit to be "individual" while slavishly conforming to the product role model. They aren't different...they're predictable. Be different - buy the right products. Every "spontaneous" act of buying flowers for the spunky girl flouncing down the street in some choreographed daydream by some advertising agency poppy whose every half original thought is for sale. Conditioned responses to predetermined scenarios.

Hanne is a good kid, who tries her best most of the time and whose take on life is enthusiastic. She goes to a regular school where she is treated decently by all her peers and almost never cops abuse. Why should she? The kids around her are good kids who are used to sharing space and who have grown up with the same constants. They're great for her (and mostly to her)...and its reciprocal.

The frustrations that inevitably result from her ineptitude or from taking soft options are, I expect, not much different from those facing other parents. Our friends with youngsters certainly don't live in some picture postcard perfection denied to us.

Happy Family commercials are okay if you aspire to a spray-on-wipe-off life. Life is more a matter of taking the rough with the smooth than buying the correct products and we just happen to have had a rather large dose of rough. I can think of far worse situations...such as the agony of dealing with a sick child who might not get better. Or of coming to terms with the death of a youngster who is perfect in every way but whose life is lost in an accident of some sort.

It happens every day...expectations and the best of plans snatched away in an instant. Its impossible to imagine anyone really living the sort of lives presented as desirable by the demented advertising execs who do their level worst to excite us about the virtues of creamier margarine and softer toilet "tissyew".

You make your own luck and you don't throw in your hand because you don't fancy the cards that you've been dealt. There's not much mileage in blaming fate or finding reasons to avoid the consequences of Nature. Even less in consoling yourself for misfortune.

There's the expectations of others - your child primarily - that demand you get on with living your life as it comes to you...a day at a time. After all, it's easier to appreciate and understand life in small chunks rather than lifetimes. A good day can be sorted through and appreciated just as easily as a bad one can be written off and consigned to the past so the next arrives fresh and ready for whatever you can put into it and get out of it.

The past is this moment escaping into a rubbish tip of wasted time or a bonfire of good intentions gone bad through neglect. Now is much more important than yesterday...even if yesterday was good.

Doug Anderson
NoticeBoard
March 2000

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