On defining moments… and everything after…

There is a process of grieving that you have to go through when you realise that your child will not be… as expected… as anticipated… as dreamed of…  That their life will be dramatically different from yours in ways you had never conceived of.  That they have additional needs.  And they are ‘additional’, they are not ‘special’, I’m so glad that that language has changed.

I think every parent treads slightly different boards on that journey to… I struggle to use the word ‘acceptance’ here, as it’s so incredibly passive, it implies ‘oh, alright then, I give up’… I prefer ‘accommodated’ *. Accommodated says, ‘I have slotted this thing into my life, a little more on my terms’.

It is a journey nonetheless and one I wouldn’t wish to repeat.  It is no underestimation to say that your life falls apart, our life fell apart, and we had to put it back together again, very very slowly.  Without the support of so many of you, and the amazing health professionals along the way, sometimes I’m not sure we’d be here at all.

There are words out there to make you feel better.  There is the Holland/ Italy scenario (for those of you who haven’t read it, you’ll find it here: http://www.our-kids.org/archives/Holland.html) which I struggled to gain much comfort from to be honest.  I wanted Italy, I did not want Holland.  Holland was not what we had asked for.  And then, and this is without wishing to cause anyone any offense whatsoever because everyone feels differently about this next phrase, but this is our personal journey so I hope it’s ok to be frank, we’d get ‘Ah well, special children for special parents’.  This phrase still makes me grumpy – it implies so many things….

That we are special, you are not.

I am not.

That you could not do this.

You could.

That – and here is the sticking point I think – some divine intervention brought us Alex.  I wish I could believe this, as it would make life easier, but I do not.  It was just a genetic blip, one we may never know the cause of.

Life just happens.

And so we grieved.  For a child so longed for to have turned out so so differently.  For a future so utterly unknown.  With Emma, I can map her out all the way to 21… Alex… I’m not entirely sure of next week.  We grieved for a family so utterly different from the one we had talked about.  We were broken. You try not to let it define you, to let it take over your life but for a time there it most certainly did.  How could it not?  Our marriage was pushed to its very limits – we were to be carers, not parents, neither of us had signed up to all that this could entail, and for a moment there, we weren’t sure we were strong enough to do this together.

But we did. And we do.  Every day.

What is amazing about human beings is their ability to keep going.  You can only live on adrenalin and chocolate for so long.  We started realising that we were laughing again.  With every negative test result for Alex came yes no diagnosis, but at least all the really scary stuff was being eliminated.  Hospital appointments lessened.  Alex and I managed to get out and just be.  ‘Life’ was resuming some kind of normal, a different normal no doubt, but our normal, one we could live with and positively enjoy.

We’re intrinsically private creatures but having Alex… in order for us to thrive both individually and as a family, we’ve needed to be much more open with our lives than I had ever anticipated.  This includes not only friends and family but all the healthcare professionals we’ve ever come into contact with.  Team Alex is a huge one and many many more people have the intimate details of his birth – and his life – than is usually the case.  No one ever asks about Emma’s birth anymore, but with Alex and every new healthcare person we meet, it’s their first question and, I can tell you, I’m starting to forget the details…

I don’t always like to talk about Alex, there is more to me and our family than just him, but he is a big defining factor.  By putting his wonderful self out there, my cheeky, inquisitive, beautiful little boy… who loves nothing more than sitting on the floor ripping up the weekend supplement… I hope that people feel able to ask questions and see he’s just a little boy, and we’re just a regular family, with just a little more baggage than usual.

Alex and paper

* (as beautifully put by a wonderful blogger here: http://premmeditations.wordpress.com/2014/02/06/when-did-i-become-that-person/)

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