Wednesday, 21 March 2012

World Down Syndrome Awareness Day 21/03/2012

Image from HERE

I was going to share a post for today that was full of information and facts until I read a blog post by Julia from Five Fairies & A Fella.  It is so beautifully written, honest and  personal that I had to ask her if I could share it with my readers. As soon as she said yes, I hit delete on what I had initially written.

Thank you for allowing me to share your words, Julia.

Because of you - in honour of World Down syndrome awareness day, March 21.

To my dear little Georgie girl,

I remember the moment I first loved you.  It should have been the moment you were born, and in a way it was, but it took me a while to really open my heart.  In that first couple of hours, I did all the right things, all the things a mum should do.  I held you, and kissed your dear little head, I patted you when you cried, and when I knew you had Down syndrome, I wrapped you a little tighter, and rocked you, and told you it would be ok..somehow it would.

Somehow though, I felt a little distant.  I gave you to your daddy, in fact, I was eager that he take you.  The midwife said that I could take a shower, and I stood there, feeling almost out of body, and nearly out of mind, for 45 minutes.  When I came out, the light in the room was dim, and you were swaddled tightly, and laying in your hospital crib.  The double bed in the birth suite was made up, so that your daddy could stay the night, and we could try to come to terms with what we had just learned.  We were scared baby - so, so scared.

I got into bed, and you started to fuss.  It wasn't a newborn scream, more of a grizzle, but of course, I got straight up to attend to you.  I held you upright, with your head next to mine, and you rubbed your cheek against mine, and you sighed.  The softest, sweetest sound, almost one of relief, as if you had been seriously wondering where I had gone all that time, after all we had been together for the last 9 months, while you carried your little secret inside my body.

And that was it - I knew we'd be ok.  In the four years that have followed, you have taught us all a lot about life, and about what matters.  The day after you were born, a midwife told your dad and I about the statistical chances of us staying together now you were part of our family, and they weren't pretty.  I looked at your daddy in alarm, as we never said so in as many words, but I think we both felt that we were a couple who had already lost their way.  Too many work hours, too much tiredness, too little time alone, far too little to talk about any more.  Too many petty arguments about things that didn't matter.

Your dad just looked back at me, so calm, so sure, and said "No way.  We need each other more than ever now".  And just like that, you started putting our family back together, the catalyst for so much good change - maybe even the baby we needed to have.  I was starting to see that you had some pretty cool superpowers.

At home, you started spreading your little awesome a little further.  Our home, before you, was certainly full of love, but as I said, quite a bit of angst as well, and I yelled too much, at your dad, and at your sisters.  It didn't take you long to let us know that you didn't like yelling, not one little bit.  You didn't mind people screaming as they had a game of chasey, or kids yelling near your ears, but the minute there was any yelling in anger, and you certainly could tell, your demeanour changed completely.  Your little face would get so sad, and then you would hold your breath for a few seconds, and then just HOWL.  You liked people to be gentle with each other, so, because of you, we all learned to be more gentle.

You didn't like to rush.  As far as you were concerned, you had all the time in the world.  You were so good at putting up with me as I rushed you to kinder and school runs, rushed your feed, put you down to play on the floor as I rushed to put on another load of washing.  You never complained, but I saw a change in you when I put you down, a disappointment, like you just wanted to be in my arms more, to just sit, be calm, be quiet.  All things that I was very bad at, always rushing from one thing to the next.  I said to your dad that we had to hold you more, as you needed us.  So, when your dad got home, he'd sit in his chair, take you in his arms, and most of the time you would both fall asleep.  And then later on, it was my turn.  The girls were always desperate for a cuddle too...so, because of you, we learned to be slower, to savour what mattered.  And it wasn't the dishes.

You didn't like to do things quickly!  Even by the "standards" set by other kids with Down syndrome, you were pretty languid.  But when you "got" something, oh my, how we clapped, and cheered, and how many happy tears dropped from our eyes!   Your sisters were only little, but they learned really quickly how important it was when you worked something out, and how it was the BEST feeling out.  So, because of you, we learned to be patient.  There's no hurry, after all.

In the early days, I had to hand you over to doctors, to operate on your eyes.  That was really hard, and I cried, and your daddy cried, and when I handed you over to a surgeon at 5 weeks old, for your first operation, I damn near had a nervous breakdown.  But you, you barely even shed a tear.  When you came out with stitches in your eyes, when you went under again to have those stitches removed, when you were frustrated with the patches and they made you swat at your eyes, still, you didn't cry.  And we decided, if you didn't cry, then we should try to be stronger, too.  So, because of you, we learned to be brave.  Because they don't come any braver than you.

So, in honour of World Down syndrome Awareness Day, on March 21, I want to thank you, for all the gifts you have given us.  Sometimes I have sat in groups of people, and told them about how many positives that you have bought to our lives, but I sometimes see their eyes cloud over a little, as if I am trying to sell something, and they ain't buying.  But that is just simply not true.  Imagine telling people that you had met someone who taught you the true value of family, taught you what mattered in life, taught you how to slow down, and savour life, and be more gentle, and more brave, and more strong.  They would say, who is this wonderful person!?  Aren't you the lucky one?  Does it matter that those gifts were given to you by someone who just happens to have an extra copy of the 21st chromosome?  It doesn't, not a bit.

We always call you the heart of our family, and you really are.  A giant heart it is, too, as it holds a piece of all of ours.

Love you to the moon and back (and then back again),
Your besotted mummy.

**Please go to Julia’s blog Five Fairies & A Fella to leave her a comment on her words**
**Reposted with the permission of the original author**

1 comment:

  1. As an addition to one's Down Syndrome awareness, I can highly recommend you all seeing the documentary "Up Syndrome" !

    ReplyDelete

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