Firstly I have to say thank you. Thank you to all my on-line friends for your words of love and support. And thank you to my off-line friends for all your hugs, emails, and endless cups of tea.
This has been one of the most difficult weeks of my life. The Geneticist threw up more questions than answers. My head is swirling and every time I try to think of something else, I eventually come crashing back down to this dark unknown road all over again. As those of you who know me by now, know I’m a type A, list-upon-list, micro-managing, uber organising kinda gal. Having what I deem the most important parts of my life out of my control is like not being able to wake up from a nightmare.
It’s not just that I have a rare chromosomal disorder anymore. In between getting the tests done and being called in urgently for the results, I found out I was pregnant. Delirious and determined, I absolutely believed this baby would stay. Three miscarriages was just bad luck, and my luck was going to change. And then the shocking news that it wasn’t bad luck at all. It was bad chromosomes.
So now this doesn’t just affect my beautiful girls, it also affects my unborn child – my dream third baby that I have fought and grieved so hard over. And this is what I know. I have a 40% chance of losing it. If I don’t (and these days tick by slower than purgatory as I try and notch up enough weeks to make it more and more viable) I have a 50% chance of having a healthy girl or boy (with my good X chromosome). But I have a 50% chance of having a baby with my defected X chromosome. If a girl, she (and my two girls who we have not tested yet) have a 10% chance of having fertility and ovarian dysfunction. This ranges from the pretty bad (what I have) to the bloody devastatingly awful (no eggs, no ovaries and no prospect of natural puberty). I can’t even take my head there. If it’s a boy, because of where the chromosome break is, they suspect he would have significant learning (and possible physical) disabilities. I don’t even know where to begin trying to figure out what I even think about all this. All day nausea (a good sign, right?) is draining me pretty low, not leaving much for this, the biggest thing I’ve ever had to deal with.
I write this because A) it helps to get it out, and if I repeat it enough it might start to make sense to me, and B) because I might be a bit distracted over the coming weeks and withdraw a lttle from my beloved writing world and women.
While I don’t want this to take over my life – I have two beautiful girls to raise and an unborn child to nuture – I need to take time and space to work through this. So please forgive my silence while I try and deal with this. The other possibility of course, is you’ll have to forgive my endless witterings – I don’t know which way it will go yet.
So thank you again, to all my virtual and physical friends – I couldn’t do this without you.