The taboo… 

Being a parent of a child with a chromosome problem, a trisomy, an extra chromosome, and in Amber’s case basically two different sets of genes/DNA can be extremely lonely. No one, generally, in your usually circle of friends can emphasise or understand, and to be honest would they want, or even need to? 

Amber was our second born child, a very much longed for second child. If we had our way the age gap between Megan and Amber would be much less than it was, but for some reason it just didn’t happen. I fell pregnant with Amber at the age of 24, and after a easy pregnancy and homebirth at 21 with the princess I saw no need for extra early blood tests and screening, which even now the name of them escapes me. Some may say I was irresponsible and immature, but how many of you actually had that screening? And if you did, what would you have done if the results were not what you expected? 

What I mean by the taboo is the questions we never discuss, the what it’s? The why’s? The why me’s? The why us? Why now? Why her? Why him? I could go on… The one thing I have asked the better half recently is, why? Why did we have another? As much as I love and adore Amber, I really didn’t appreciate the ease of one child. One healthy, ‘normal’ child. This evening, well actually the whole of today I have spend packing and repacking bags for Amber’s hospital admission next week. In a ‘normal’ family we would be packing for a week in Spain, not the LGI. 

I’m not looking for sympathy, or hugs or other ‘woe is me’ type replies, I’m just ranting about my life, as we all do. I’m still ok to do that, I’m still me, I will still moan. It doesn’t mean I would change anything. I love my children more than life itself, it’s why we are here, to continue a part of us. I just didn’t expect it be to this challenging… 

Don’t make an extra chromosome a taboo… Chat to that Dad at school who has a boy with Down’s,  a Mum with a girl with Patau’s (Amber). Ask them questions, don’t be shy, it isn’t rude, it’s raising awareness. It’s making it normal. You never know, showing some interest may just make their day… 

3 thoughts on “The taboo… 

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