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Monday, 3 December 2012

Life Unlimited

Up, down, in, out - all of us lead lives full of curves and ever changing focus.  This is an amazing piece of three dimensional art on display at the Science Museum in London.
I've been to seven funerals in the past ten years, five of which were for children.  A friend of mine, Amy, has a son with a medical condition which means he is 'life limited' ~ again, it's all about the words, as if by avoiding the word death we can somehow pretend it isn't actually happening.

Oliver's condition was diagnosed after his little sister had been born, when he started having seizures.  Some were worse than others, but he had one or another type of fit most days.  The family coped, as families tend to do, and his little sister, Erin, understood that this was simply a part of his life, and had been told that one day he would die.  I can't pretend to know what that is like, how heart breaking that must be ...

Anyway, although Oliver's condition deteriorated, he was still around for Erin's fourth birthday, and when her mum was tucking her into bed that night Erin asked if her seizures would start soon.  Not understanding, Amy asked what she meant ~ it turns out that because she knew Oliver had began to have seizures when he was four, Erin thought it was going to happen to her too.  She had thought all her life that she too was going to start having seizures and die during childhood.

Amy wept on the phone to me later that evening, torturing herself for not having explicitly told Erin she didn't have the condition Oliver had, for not having told her she wasn't going to die young.  Amy had made a purposeful choice to talk to Erin about the seriousness of Oliver's condition, but by doing so had inadvertantly  caused more heartbreak.

So maybe there is no right way, maybe there is no option that is going to cover everything you want your children to know without leading to assumptions that you don't want them to make, or to questions that you don't know the answers to.

Oliver is still with us, though probably not for much longer.  Erin is eight now, and loves her big brother to bits.  She is kind and compassionate, and will grow up to be a truly extraordinary young woman, who will cherish her memories of time spent with Oliver for the whole of her life.

As parents we try so hard to protect our children from the sharp corners and rough surfaces of life ~ is it possible that by sheltering them from how ugly and upsetting this world can be we are hugely underestimating them?  Are we preventing them from developing the skills necessary to live a fulfilling life themselves?



*all names changed for privacy 


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