Monday, 16 March 2015

It's all about Evie...

I thought it would be a great start to Down’s Syndrome Awareness Week by having a guest post from another parent. So I asked Kirsty to write something about her beautiful daughter Evie and here it is!

****STOP PRESS****

The great news is that Kirsty has now joined the world of blogging so you can follow Evie’s journey at www.itsallaboutevie.wordpress.com so please give her your support!



Hi. Thanks to Paul for asking me to takeover, I mean guest blog. ;)

I’ll introduce myself, I’m Kirsty and I have the most gorgeous six year old daughter called Evie. Evie is our eldest daughter and the absolute centre of our world. Evie also happens to have an extra copy of chromosome 21, more commonly known as Down’s Syndrome.



For Down’s Syndrome Awareness Week, in the lead up to the great Lots of Socks Day, I’ve been thinking about what Down’s Syndrome means to me. Is it about scary hospital appointments and learning a new language surrounding learning disabilities? Is it about being fearful of the future? No, it’s this…

Evie has opened my eyes. She is so in tune with her feelings. If she wants to lie in a puddle she will, if she doesn't feel like walking - she won't, if she wants your chocolate biscuit, then it's hers. It's refreshing (and often infuriating when I want that biscuit). There is no hidden agenda. Evie takes life and she shakes it up. She makes you question your values. She is honest to the core. What's not to love about that? 

Finding out that Evie had Down's Syndrome was terrifying. I admit that we were beyond scared. We knew NOTHING expect the crap you see on the tv. I didn't think that her life would be fulfilling. I have never been so wrong in my life.

I've heard other parents say that it was never an issue for them, when their children were diagnosed. I can't say that and to be honest, I can't quite believe them either. I was afraid. Mainly of myself and what others would think. Thanks to Evie, I really don't care what Joe Bloggs on the street thinks about us.

What I do care about is that our society seems to think that it is ok to belittle those who are different. Whether it be Down’s Syndrome, Autism, Cerebral Palsy, microcephaly, Turner’s Syndrome, if their sexual orientation is different to what that person thinks that it ought to be, if their skin colour is different, if they are female or male. Why do we treat each other this way? Who gives us the right to judge and mock? To have one-upmanship over others?

Different is good. If we were all the same, it would be a very boring world. Variety truly is the spice of life. I’ve asked my friends and family to help.  I want them to back us and people like us; to help us promote the worth of our families, the fact that actually having any disability or any difference shouldn't matter. You shouldn't look or stare or judge. It could just as easily be you. In our case what is an extra chromosome between friends? Join us. Together society can change.






4 comments:

  1. Yay Evie! I have had the pleasure of meeting her very briefly!

    I still struggle to see disability. I went to a special school when I was seven as it was assumed I had a learning disability, and it was amazing!!! I loved it so much, sadly I got re-streamed back to mainstream school when it was found I was just a bit quirky,

    My son has almost had an autism diagnosis and is similarly described as "quirky"

    My experience as a child led me to work with adults and kids with disabilities, and I can honestly say, I can't really see what the fuss is about. None of us are perfect, all of us have our challenges, our amazing points, our failings.

    I wouldn't want to live in a world without Evie that's for sure!

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    1. Hey Kylie, haha - we're all a bit quirky in some way or another aren't we! Great comment - thank you!

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  2. Thank you for this article. It reminds me of a time I met Desmond Tutu (sorry not trying to name drop) and he said this "In heaven there are no VIP's like we have here on earth, like at airports. In heaven there are only VSP's, VERY SPECIAL PEOPLE". All are Very Special People here on Earth and that is how God sees us. That has got to be Good News.

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    1. Thanks Mr B. He's a very wise man is Arch. So very true. We are all unique and fearfully and wonderfully made!

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