Monday, April 4, 2011

It's all in the jeans


It must be genetic - this going overdue business. I don't know why I got excited yesterday when I started having some strong niggles and thought, 'woohoo the baby is coming on his due date'. The niggles stretched out into nothingness and now today I am officially in the overdue club, just like with all the other kids. Who was I kidding right!!


I have gone, it seems like in a heart beat, from having a beautiful baby girl with a mutation (don't you love that word 'they' use - like there's something wrong, instead of, it's just something different and unique) of chromosome 21 (down syndrome), to having a beautiful baby boy with a mutation of chromosome 6 (salt-wasting congenital adrenal hyperplasia(SWCAH). Like my geneticist says - "Simone, you must just love mutated chromosomes". She can crack jokes with me like that because she has been my geneticist for nearly 8 yrs now and she has brought me through the highs and lows of having perfect babies with imperfect chromosomes. And in all seriousness, I answer back, "yes I think I must".

Hallie is SO excited that we are getting another baby just like her. Having CAH only affects one in 14,000 babies so Hallie hasn't met anyone else like her. Before it was diagnosed in the 1960s, babies with the condition would die within about 3wks of their birth. People have told me 'at least CAH is not DS - you're lucky there', and they are right, it doesn't bring with it all the challenges that having DS has, it doesn't even compare with some of the challenges other children with special needs face, but it cuts me to the core when people say that, because a whole lot of me still wishes I was having my baby with DS and they don't understand at all that once you accept your precious unique baby, you would do anything in the world to keep them 'just the way they are'. And so it is with the new 'boy baby'.

Hallie
Hallie has already told me that she will 'teach the boy baby to be brave'. To begin with, as little babies, CAH can be a bit tricky as you try to get the meds dosages right, blood tests nearly everyday which can be hard on tiny little veins, seeing how resilient they are with the condition and their reaction to their meds. Hallie was in neo-natal for 3 wks and then home for 3 wks and then off to Melbourne for surgery. Her endocrinologist is amazed at her resilience and ability to fight off an adrenal crisis and not have to go to hospital so fingers crossed that the baby will be the same. Hallie has her meds every eight hours and one advantage to having the same condition is that, even though their doses will be different, they will be able to have their meds together and go to their specialist appointments together and do bloods and bone scans together. I can see Hallie as quite the little mother.

Hallie in thoughtful repose staring down into the flooded Gorge
So as I reflect on the last 15 straight mths of pregnancy( yup all bar 5wks, its been THAT long!!!), in all of this, I am reminded of the Greek philospher Epictetus words, "He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has".

I know everything will fall into place as I hold my little boy in my arms and think about how blessed I am to have him, and maybe then my imperfect ole soul will understand why this journey took the course that it did. And as Charlotte kisses her baby brother goodbye from heaven, I will kiss my son hello on earth and the circle will be complete.


12 comments:

The Kings said...

Simone - that was a beautiful post. I can just imagine Charlotte up there now telling her little brother how lucky he is to be coming to a family who is going to love him so much. I know how much you wish it was her coming, but also know how much you will love this little man who will soon be joining you.
I can't wait to meet him, and I'll be happy to have you in town for a little while, while you sort out the meds so I can visit all the time - you are going to get sick of me :)

emjay1000 said...

Beautiful.

VickiT said...

Love this post. Thanks for sharing your feelings.

Becky said...

I SO wish I could meet your new bundle from heaven. There is nothing sweeter than an infant. I can't wait to hear! And he's lucky to have you as his mother!!!

Penny B. said...

Just Beautiful Simone! I'm anxious for you to go into labor & thinking of you often. Hopefully soon.

the woodwards said...

Can't wait to see which of MY names you are going to pick!!!
still waiting for my REAL inbox!!! :)

Rebecca said...

beautiful post simone x You have a brave girl in Hallie to teach boy #3 !!

Cullis Family said...

Lovely Simone!

Nettie's Blog said...

well that is the start of the book you should write girl....that is when you have time in between all those doctors appointments...you are a Wonder mum...cant wait to meet the little man ..perhaps we can escape and do a hot choc like before????

Nikki said...

what a beautiful, touching post Simone. I love the way you write and express your feelings/insights. Thinking of you. x

Makayla said...

That is such a beautiful post, Simone. All the best for the birth of your little man - can't wait to meet him xxx

Blanche said...

You have such a lovely way of expressing your inner most thoughts. Thanks for sharing them. Hope all goes well and that the meds get sorted quickly so you can take him home to play with!