Looking for a story.

I don’t know quite where to start with this story that is hitting the headlines and doing the rounds of the social media.   There are so many issues tied up in the parcel that it’s difficult to know which one to go for.  There’s the girl, the mother, seemingly forced by poverty into selling her body for breeding purposes.  There’s the Australian couple.  So desperate for a baby that they outsourced a womb that worked for the right price.   And there’s the baby.  A boy with a heart condition who happens to have Down Syndrome; a boy who didn’t fit the bill and now finds himself living in the state his existence was supposed to solve.

When Sam was born I struggled.  I struggled with my anger that life hadn’t turned out the way I thought it ought.  I struggled with the foreknowledge that my responsibilities, as far as parenting was concerned, were going to be greater in the long run.  I struggled with the idea of foreknowledge.  I struggled when I thought that other people would pity me, the woman with the disabled son, that they would judge me as having failed to reproduce genetic perfection.

I admit it.  I have wished with all of my heart that the extra copy of that chromosome didn’t exist.  I mean, why wouldn’t I?  Why wouldn’t I want that little tiny thing that makes the lives of all of us more of a challenge, least of all him, gone?  Everything he has ever done has come at a price, a price of effort and grit and determination and hours and hours of sleep on all our parts.

And my other children.  My heart breaks for them that their older brother isn’t the one they need.  That, as they grow they will turn from younger siblings, to be bossed around and teased mercilessly, to carers, bearing their share of a responsibility forced upon them.  Why wouldn’t I want to make their lives, all three of them, at least a little easier?

This doesn’t mean I don’t love my son.  This doesn’t mean that I don’t accept him, just as he is, warts, and chromosomes and all.  It doesn’t mean that his life isn’t worth living, or that ours, as a family, is somehow less than other people’s; you know, those other families who have perfect marriages, and perfect houses, and perfect children, those ones.

And while we’re at it, let’s have another look at all the frowning at the Australian couple.  I lose count of the number of opinions there are out there over antenatal testing and Down Syndrome.  So many babies with Trisomy 21 never even make it to 40 weeks.  It wasn’t so long ago, only in 2001, that adoption was mentioned to me.  Babies with Down Syndrome are rejected all the time.  Maybe not in such circumstances, but still.  It doesn’t take much for people to start on the, ‘I don’t think I could do it’ line.

If there’s one thing about this story that makes me glad it’s this: that people are talking about it.  They are talking and writing and sharing and thinking about Down Syndrome, and maybe, just maybe, what they might do if it happened into their lives in the form of a baby.

Sam isn’t a normal child (who is?).  I would be telling porky pies if I said that he was.  He’s a challenging charmer, a teller of appalling jokes, a reluctant schoolboy who dresses in his uniform in the holidays, and I love him.  If I told you that living with Down Syndrome was a breeze, no different to any other family, that wouldn’t be honest either, and yet I would rather be with it than without.

I knew it when he was born, and I sure as hell know it now he’s midway through his thirteenth year: life doesn’t come with a money back guarantee.  We like to give ourselves the illusion of control, as the couple from Australia so amply demonstrate,  but when it comes down to it, we are tossed and turned upon an uncertain sea, just the same as anyone else.

Your baby may have the requisite number of chromosomes, they may not.  They may be as cute as a button, or they might look like the back end of a bus.  They may be sunny tempered, sleep through the night, never have a tantrum, be rude in public, tidy their rooms and do their homework, no second asking.  Or they might be contrary, awkward, bad tempered, tummy-achey, no sleepy, constantly snotty so-and-sos, and, and this is the important thing: there is not a damn thing you can do about it, tested or not.  When they grow up they may be top of the class, or they might not.  That’s how it works.

Some time ago now, someone said something to me that made me stop and think.  I was at her daughter’s house and we fell into conversation; it turned out that she worked with adults with learning difficulties.  I happened to mention something about not wanting Sam to cuddle everyone and anyone and she looked me straight in the eye and said, ‘You do right, because what is acceptable in the child is not in the adult.’

So there we have it. My biggest problem is not so much the story itself, even though it saddens me, after all, it’s a logical conclusion to the whole designer baby, straight line progress, check list culture we seem to be living in worldwide, but that, whenever I see a story about Down Syndrome it’s about infancy.  It’s about cute babies and their toothless smiles, how they bring a special something into lives that didn’t know they were lacking.  And while, like the lady said, it’s easy to accept the baby, the toddler, the emerging child, how do we feel about the teenager?  The adult?  Where is the cocklewarming story about that?

I guess I’ll have to write it myself.

When Sam was a baby I spoke about it too 

Here’s a father’s response.

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Selfies seem to involve me getting squashed.

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4 thoughts on “Looking for a story.

  1. Oh gosh, the school uniform in the holidays made me snort!
    As a Mum who adopted a child with DS I’ve had lots of chats based around the “how could his birth parents give him up?” question, but also SO many people have said “I couldn’t do what you’ve done”. All I’ve learned is what I’m willing to do. And I’ve discovered that I can’t judge a soul – especially when I don’t know the full story. Our son’s birth family are gorgeous – not baddies. And, their genes have produced a child who looks cool even in a LEOTARD!

    But even though we chose this and we chose him, there are days when I think ‘if I’d known how hard it would be… if I had known he had ASD too… if I’d known I’d be changing nappies when he’s 8… would I have done it?’ – and some days I honestly think I wouldn’t have. But we have! And you know, if I’d known about my other two children’s AWFUL sleep and my daughter’s RAGING temper and my own depression, maybe I wouldn’t have had the three kids I have. BUT that’s why we don’t know the future, isn’t it? Because I’d rather have this than wonder what I was missing.

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