Friday, 13 May 2016

Why I don't hate trisomy 18


A lot of people proclaim to hate trisomy 18. I understand why; they feel it took their babies from them. They see it as an enemy that stole their longed-for child and left them with pain and grief. I get that.

It's just not the way I feel.

Rumer without trisomy 18 was not a possibility. Without trisomy 18, Rumer would not have existed. I suppose I would never have known; I'd have another baby in my arms right now; I suppose I would have loved them just as much. I would have lived in the world most people get to live in, the world without hospitals and crises and fights with doctors and death, and I'd have thought an admission to PICU was a catastrophe - in fact, I guess I'd have thought a trip to A&E was a catastrophe. The world I live in now wouldn't have touched me, but that just makes me sad.

Trisomy gave me a gift. First of all, it gave me Rumer: it gave me my perfect, beautiful girl, with her little crossed-over fingers and 'hobbit feet' and her sweet smiles, soft skin and love of cuddles, music and people talking to her. Rumer without trisomy 18 would not have been Rumer. And with Rumer, trisomy gave me something else. It gave me a community of people: people who are by turns supportive, wonderful, inspiring, irritating and courageous. I would be sad not to know them.


Trisomy gave me insight. Insight into myself, into who I was, into Chris, into hospital systems, into doctors and nurses, into how communication works and how it doesn't. Insight into a different world where babies live and die, where PICU is just some place you end up eventually and hopefully leave. Trisomy gave me the courage to fight, to speak up for Rumer, to change things. And it gave me strength, so much strength. It gave me anger: fiery anger, anger at systems and doctors that let children die and lie to their parents, and that anger also gave me power: power to turn things around.

Trisomy also gave me the mundane. It made me realise that even in the middle of the greatest crisis, even when you are spending the last hours and minutes of your child's life with them, the mundane intrudes: the need to eat, to use the loo. It made me realise that what can help parents in hospital is simply someone to bring food and do the laundry. It introduced me to people who are wonderful, insightful and caring: those people were medical professionals, volunteers and bagel-sellers. It also introduced me to people who were narrow minded and lacked compassion, and those people also spanned the range, medical professionals making up quite a number of them. Perhaps that was the downside of trisomy.

So overall I'd like to thank trisomy 18: thank you for all the gifts you gave me. I'll take the other stuff for the gifts, and if you should want to touch my life again, then know that while you may not be welcomed with open arms, I'll know that in the end you will bring more than you take.

2 comments :

  1. That is a lovely article Helen, I can echo those thoughts and feeling.

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  2. What a beautiful reflection and so very true. Our children have this amazing ability to open our eyes and change our world regardless of how long we have them. The best thing is that the love we have for them does not die when they pass; we get to carry that with us for all time.

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