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Wednesday, February 22, 2012

What if we had known?

Due warning: this is not an easy post to write and is not likely to be an easy post to read - but its what's been in my head - so its coming out - it has taken me three weeks to get to this...  This was brought up in my mind by one of the things I look at and it got me to thinking.

When E's Mum was pregnant with C, we had that conversation while we were awaiting the result from the nuchal scan, which is used to screen for Downs Syndrome.  Any expectant parent is excited by the early scans, but that one held a real sense of dread for us - what if they told us the news we just didn't want.  Well, we had talked and talked and talked and both of us had decided that we would accept the news and work out how life would change and roll our sleeves up and deal with it - but that it would likely mean we would stick with one.

So, fast forward a couple of years and C is a mad little toddler, who has come out from his little infant ailments and is strong, healthy and so very much a boy!  E's Mum is now pregnant with E and we find ourselves having the same conversation - and the conclusion is pretty much the same - why wouldn't it be? It was the decision we came to the first time - and we didn't need to use it, so decision remained the same.

Now don't get me wrong, there is little chance of scanning happening for Williams Syndrome - it affects 1 in 20,000 approx and beyond that, i am not certain anyone has ever been able to determine an easily detectable test for it in utero.  However, E had extra scans focussing on the heart due to a variety of issues i had.  Perhaps they may have been able to tell that there was something not quite right with his ticker?  So, what if they had been able to, what if they had said, "E's mum and Dad, E has Williams Syndrome".

Well, I don't think it would have changed a thing.  We had had the discussion first time round. If I'm honest, i think second time we had the talk without really thinking it would come to that (how wrong we were).  It would have allowed us to prepare, it would have allowed us to work out how bad things might be.  BUT, the bottom line is that we had both signed up, when it was the specific test they routinely undertake, to play the hand we're dealt.

I do not truly believe you can know what you would do in that instant, unless you are in it.  Genuinely.  To a certain extent we have been put in it - we were told by E's Dr,  and it felt like that moment - i never want to forget  how it felt when we drove home in silence, flopped on the sofa and started googling like mad.  I don't want to forget because I will then never know how far i have come from my lowest ebb.  We had no choice, we had no time, we had a piece of news which changed our lives and our plan for our family in an instant.But, what we did have was an 8 week old baby who needed a bottle, a nappy change and a cuddle every now and then (oh and he had something called Williams Syndrome).  We had E.  E was E.  He had this little character, not much but he had it.

What all of this taught me, is that you can never know what someone felt when they made a decision - and what I feel may be very different to what anyone else may feel.  Some of my more held beliefs remain in me - but i never think too much about other people's decisions anymore - they have their reasons and I don't believe i have the right to consider them as anything but just that.  This has been written for me to remind myself of this exact sentiment!

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