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Sunday, 16 August 2015

A letter to myself, two years ago today

Dear Duck at 4pm on Friday 16 August 2013,

As you read this, you are sitting on the sofa, phone in hand, both willing it to ring and wanting it to never ring again. A week ago, you were told that your 13 week-old baby-in-the-making had a 94% chance of having Down's Syndrome. You are terrified. The Harmony Test the clinic used has a false positive rate of less than 1 in 1600. It's far, far more accurate than the standard combined test, which you also took and confusingly gave you a 0.007% chance. The consultant who stuck the giant needle into your placenta, making you faint on the Tube home is puzzled, and has given you a 50% chance. You are drowning in meaningless statistics and don't know who to believe. Google has been no help whatsoever as the Harmony Test is new and nobody else in the world seems to have been in this situation before.

You honestly have no idea what you're going to do if the news is bad. Before you agreed to the test, you were certain that the result wouldn't matter - after two miscarriages and a threatened loss early in this pregnancy, you just wanted a baby to hold, no matter what their abilities and needs might be. Now you're not so sure.

You've worked with young people with Down's Syndrome. You know they are individuals first and foremost, unique people with unique personalities, likes and dislikes, strengths and weaknesses, just like anyone else.  That extra chromosome does undeniably brings some challenges with it though. The problem is the unknown.  The severity of the health problems associated with DS can vary enormously, as can the extent of the learning difficulties. You don't know what their temperament might be or how much social awareness they will have.  You don't know many operations you might have to put your child through, or how much of your longterm independence you might be signing away. You don't know if going ahead is a decision that, in your heart of hearts, you might one day regret.  Just that admission has you wracked with guilt. You desperately want to be noble and selfless and liberal and say you don't care, but the reality is you do. This is your child, and your life, and you know with Drake away with work, you will be raising this baby solo for much of the time.  There will also be judgement from everyone, including yourself, whatever course of action you and Drake decide upon, and you're not sure you can handle it. Or the new fissure it will create in an already cracked heart.

I want you to keep it together though, because everything is going to work out fine. You had that one in a thousand false positive result. In a minute, the phone is going to ring and a lovely doctor is going to tell you that your CVS test was normal - your baby has the right number of chromosomes and there are no signs of any issues. And it's going to be a boy, much to your surprise. You will hang onto the windowsill for dear life as she tells you this, then you'll collapse onto the lap of your amazingly strong husband, a crying, shaking, laughing mess, not because your baby is 'normal' but because you no longer have to decide what to do if he's not.

In the days that follow, once the elation wears off, you'll wonder why the Harmony test gave you the unharmonious result it did (I'm afraid you'll never know). You'll spend some time feeling guilty that you got handed a golden ticket when so many others do not, and that you even contemplated ending the tiny life inside of you (that guilt will get worse when he arrives and you realise what unconditional love is like). You'll also be scared that after all this, you might still lose him, or that the CVS test will turn out to be wrong, all at the same time as feeling resentful that PITA (Pain In The Arse) as he will be known for the rest of the pregnancy and a little while beyond has caused you so much stress. You'll not want to be bloody pregnant any more, you won't want to see any more midwives or talk to any more doctors. You'll want to put your hands over your ears and shout "la la la" at everyone and at the contradictory maelstrom of thoughts in your tired hormonal head.

When he starts moving though, and you feel the strength of his kicks, you'll understand what a tenacious little boy you have on your hands, and how nothing was ever going to stop him making his way into this world.

I want you to know that if that call hadn't been good news, whatever you decided would have been the right thing. Being a Mum is all-consuming, and if you'd gone ahead with the pregnancy, you would have loved your baby from the moment he was born and done everything in your power to make his life a happy and fulfilled one, regardless of the difficulties and the problems.  It's a cliché, but love does always get you through.

If you hadn't then I wouldn't have blamed you either. For all the joy and love, motherhood is also incredibly hard work, precisely because your love makes you give your all. Love makes it worth it, but it doesn't make it easy.  The dedication required is unrelenting, even for a baby with normal needs, and it drives you to the brink on a regular basis. The prospect of that child never really growing up, of potentially needing you, as a child does, for the rest of your life, then of having to rely on strangers for care and guidance after you've gone... You would have coped because you'd have had to, but you would now be bruised and exhausted beyond belief. Except you'd never be able to admit that because you picked this path.  Having a difficult life handed to you is one thing. Actively choosing a more difficult life - for you, and your child - is another.

For now though, just keep that phone within arm's reach, and stay strong. One day this will all be ancient history; a tale to be told to the baby growing inside you, and to his children too. If I could hug you, I would, but as I am you in the future, you might have to settle for hugging yourself.
 
I should go before this gets too confusing.
 
Lots of love,

Duck at 4pm on Sunday 16 August 2015 x

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