Saturday, January 2, 2010

Well It's Been A While...(And What Down Syndrome Really Means)

EDITOR'S NOTE: This post originally appeared on Small Acts of Kindness on December 16, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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About 3 days too long based on my last poll :) Thanks to my votees and numerous emails/comments/requests I've had for "more please!". If I was MJ or some similarly talented individual I'd probably tell you that I love you but actually I'm just bloody chuffed...although I do love you too :)

Anyways, to be even more honest, I would have updated earlier but am just getting in to the groove of this blogging thing and am also stuffed. I just don't have a pause button. I don't have a 'me' button (though the readers of the Bikram Yoga post will be well pleased to know that I'm well on my way to Lotus posing with the best of them and the readers of the Martha blog with be pleased to know I've been cooking! With vegetables!).

BUT. I don't want this post to be about me. I want this post to be about Isabella. And I have since about Tuesday when I caught a bus with her into the city.


My 4.5 year old with Down Syndrome. Ya know, I just had a flash back to the moment in hospital when they told me that her having Down Syndrome was a possibility. And I just felt a tinge of sadness and a lump in my throat with that flashback (I've also just had 3.5 Drambuies on ice so that probably doesn't help :)). But it was sad. It was sad because my partner just walked in after almost floating back to Bondi the night before to a room full of huddled doctors (a senior one and about 7 other student doctors) and hit the floor with a thud when their whisperings started to get a bit coherent.

IT COULD NOT BE. NO! NO! NO!. How could they make this up! Not his little girl. Not the one that was gonna kill all the fellas with her surfing skills, not the one that was going to turn the heads around Bondi for the next 18 yrs plus, not the one that would be doing this inbetween working out what more to do with the split atom for 2027 Nobel prize win. Could they not see they were wrong??

What a strange strange time that was. Such a strange strange time. I want to go back and give that mum and dad a great big hug and say "you have no idea just how ok you will be, you have no idea just how beautiful she will be just as she is, you have no idea that one day will start to write a blog about her and your eyes will well with tears because, frankly, the light inside her makes you feel a beautiful, tender and caring love that you could not have expected".

Those that know us know that we lost another little girl 10mths earlier. Our beautifull Liljana who was born too early, much as her fight would have had you question otherwise. We then, and still now, missed her. So our resources were down. First the dream of one girl, and then the dream of the next.

And yet we still had our baby girl. But the adjustment from what we thought she may be, and the realisation that what we thought no longer mattered, was a mighty adjustment to make in 2 days. It took longer ofcourse. It took longer for R. He lost 2 dreams in less than year. It was understandable that he shoved his head so far down that sand pit that it took me virtually jumping on his back and thrashing about to pull him out.

I had my pains too. I was angry with the universe. So so SO angry. How could it do this to me?? I wasn't a bad person. I love diversity. But another load of adjustment and pain my way? Again? Why? Why? Why? Lots and lots of nights wondering why??

Soon enough (actually around the time my friend Sally popped over with a bottle of Baileys and left 3 hr later, ahem, Baileys free) my mind started to much more easily shift towards..."oh look, she needs a breastfeed, where is that nipple shield" to "oh, wouldn't that top look great on her" to "I wonder if anyone has noticed just how divine her eyes are". The mummy in me kicked in. And I am very very very proud to say in a very very big way.

But it wasn't all butterflies and fairyfloss. I became an internet addict. In the middle of midnight, 2am and 4am breastfeeds I was googling every possible Down Syndrome scenario. At 3pm in the afternoon I was googling. At 4pm I was still on. At 9pm I was still on. More, more, more. What more info was there for me to know. I was addicted to knowledge. It probably took me about 2 years to really start to kick back. A lot of mums will say they wish they could have just relaxed and enjoyed that time more. But I did enjoy Belles. I just wanted to be armed with every bit of ammunition I could to make her transition in to life outside my arms as positive, as capable, as strong as possible. I think in plenty of ways I've managed to do that. I think in plenty more ways she would have done it anyway.

It's a little late to mention this, but this post is really for those many people that asked me many times, and for those that wanted to ask. What's Bella really like? What's it like having a little girl with DS

I could tell you plenty of things. I could tell you how really, it's not much different to having another child (and I'm qualified to say this because I have another two - they can alternate between being the most divine little creatures on the planet to you wondering what on earth you thinking when you decided to procreate). I could tell you if you are a new parent that she is toilet trained, walks and talks (those big early worries) and can give a head of hair (usually her brothers) a tug so hard you would be sure there is no 'low tone' there at all :). I could tell you that I find it frustrating that it takes her a little longer to learn things. And that this is my biggest big fat cross against that extra 21st chromosome. That despite how strong her desire is, things will always take a little longer for her to learn. I could tell you, like most of us, she won't learn everything. I could tell you that oft times when she does, it will be with a lot more effort and persistence than the rest of us could even muster. I could tell you that she has the most amazing green eyes and a smile that melts hearts. I could tell you that her brothers adore the pants off of her (hair tugs and all). I could tell you that she is one hell of a clever cookie that knows exactly what she wants and doesn't want. I could tell you that some days, like my other 2, she wouldn't have a clue what she wants. I could tell you that if anything, ANYTHING ever happened to her my heart would break in two and never ever be repaired again. I could tell you that the way she greets people at the door makes her, quite possibly, the only reason anybody ever comes to visit (it's certainly not for the cooking, I can tell ya).

But I won't tell you all that. What I will tell you is what happened on the bus on Tuesday.

It was 9am. I was on my way to a course she was coming to. The whole bloody bus was miserable. I've forgetten how unjoyful people are. Not me and Belle's. She was my joy. That kid just did not stop smiling. And playing. And chatting. I did not stop smiling. She made me happy on that bus ride from the inside out. All these miserable people could do with a bit of Bella in their life.

But she's a kid right. All kids are a bit of fun (when you're not racing to work yourself - but that's another blog). No. Bella's extra. And I've known that for a while. But on Tuesday I remembered why.

On the bus ride home it was a MUCH happier bunch of vegemites (3pm - non workers is my guess, bless their happy socks). They smiled at her. She giggled back. They giggled. Grown men giggled. Ladies stopped on their way out at their bus stops. They tickled her. They high 5'd her. The bus ride was less than 20 min long. There was happiness all round and she was handing out little rays of sunshine in dosages well beyond her size and years. And then we got off the bus. And the bus driver said "goodbye gorgeous". And she beamed. And she blew him the biggest most beautiful kiss. And then he beamed and his head nearly fell of his shoulders from having to hold a smile so wide. And he blew a kiss back. And then he nearly crashed the bus driving off he was in such happy la la land.

And me? Well I was so so so proud of the beauty in front of me.

I haven't thought about the 27th Jan, 2005 for a very long time.

Tuesday and the other Tuesdays in my life are the reason why.

Thankyou Bella. Thankyou for being more than I ever thought you would be. Thankyou for being beautiful. I love you.

For the rest of you. Holy cow! You got to the end! Can you go and follow or subscribe or leave a comment or something so i know who you are :)

And a teeny little post script. Bella got up at 5am today. She took care of her dolly patiently for about 2 hours before the rest of us ventured up. But it was too early. She got tired and cranky and shovey and sooky and a bit of a pain. Coz, really, she is just like any other kid :).

And lucky for me, she's all mine.

Dovic xx