Well, kids, here it is. Another bit of health drama to add to my pile.
First, I should say that I’m not exactly comfortable fessing up to this bit of news because it’s really, really hard for me to think about. However, writing things out is very therapeutic for me and I’ve had a lot of people say that they appreciate how open I have been about all this crap thrown my way so I decided to do it anyway. Maybe this will help me sort through my current trauma-induced emotions. Maybe not. I can’t figure anything out anymore.
Secondly, another reason I decided to write this is because if anyone reads this who is or will go through something as horrific as this, I hope they can realize that there is always strength to be found somewhere. Whenever you think you’ve given enough, been through too much, been pulled to many directions, there’s always more you can give, experience and be thankful for. There are always lessons to learn and ways for us to grow and evolve as people. If I can make it through THIS, anyone can make it through anything – and I hope people read this when they are going through hard times and realize that, eventually, everything will be okay and there is always some additional strength somewhere to help us get through pretty much anything. Basically: the fight is never over. The healing has already begun.
Campy, but right now thinking about that is the only thing pulling me through.
So here’s what happened:
Yesterday I got a call from a genetic counselor. They got my blood results back from the genetics lab and it turns out the baby is considered “high risk” for a fatal chromosomal disorder. It’s not treatable. If the baby does have it, chances of it surviving the pregnancy are next to nothing. If it does survive the pregnancy, chances are 90% it will die within two days of birth. No child with this disorder has ever lived past a year.
Basically this chromosomal issue makes it so the baby isn’t growing properly (if it has this). Babies with this disorder usually have huge heads and stunted bodies, limbs don’t properly form, ears don’t form, they have sight issues, holes in their hearts, liver and kidney problems and everything else.
The disorder is horrible, and it’s caused by some weird thing that happens spontaneously during fertilization. It’s not controllable, and chances are, if the baby does have this and I decide to have more biological children in the future, I will never face this issue again.
That’s meant to be comforting, but it’s not. Let me explain why.
I’m not 6 weeks along here. If I was, I could deal with this a lot easier. No. I’m almost 20 weeks – the halfway point of pregnancy. I’ve had a chance to pick out names, to get gifts, to buy and set up a crib, to anxiously wait the five more weeks it takes to reach viability (the point where the baby will probably survive outside of the womb). I have felt kicks and flutters… I’ve gotten attached to the little bugger.
Then this happens.
It never ends for me.
The chance of the baby having this right now is 1%, but that’s still way too high for me, and it’s considered “high risk” for a disorder this severe. On Thursday I go in for a very high definition, intense ultrasound. They will be looking for any obvious deformations on the baby. If the baby (or maybe I’ll do this anyway, I’ll see how I feel on Thursday) has any deformations (which should be obvious by now), then I’ll be getting an amniocentesis. An amniocentesis is when they stick a huge, horrible looking needle into your uterus to extract about 5 teaspoons of fluid as well as some skin cells from the baby to analyze. It will take me about 10 days to get the results and see if the baby really does have this disorder.
Hopefully we’ll see a healthy, happy baby in there and the only new bit of news I have to share on Thursday is whether it’s a boy or a girl. If, however, this baby does have this disease, then we will seriously think about termination. (I know everyone has their own views/beliefs regarding that, and until YOU are carrying a baby for 20 weeks and learn that it might have a fatal disorder that is impossible to survive with, please don’t judge me for what I may choose. You don’t have that right).
So there it is. My husband says he has a “hardcore gut feeling” that everything will be okay. I hope he’s right. I don’t think I’ve ever wished for psychic powers as much as I am right now. I know the risk is just 1%, and to many that is comforting, but like I told the genetic counselor yesterday: “I had a 4% risk of having cancer and I got it, so the 1% risk really isn’t that comforting to me right now.” I was so upset by this news I spent most of last night throwing up. I didn’t sleep very well, either. I just feel like I’m missing every mark recently. I had a 4% chance of cancer and I got it. I had a small chance of my joint disorder flaring up during pregnancy and that happened. Now this. I just feel like, if there is a small odd for anything, I’ll end up making that odd somehow. I mean, even testing high risk for this disorder is a small odd that I somehow miraculously made. Out of all the diseases and disorders they test for, I had to get a chance at the only fatal one on the list. Go me.
Anyway, as you can imagine, this will probably be affecting my blogging (again). I will try to review this week, and I’ll probably get out one review (and the contest stuff) but I’m not sure if I’ll be able to do much more than that. It’s a horrible waiting game until Thursday and my mood/mental stability is wildly fluctuating right now and I assume it will until I get that damn ultrasound and see what is happening in my womb. I hope everything is okay, but you never know. If I’ve learned anything since I was diagnosed with cancer, it’s that life is unpredictable and that somehow, some way, I’ll find the strength to get through this… just like I’ve found the strength to get through every other thing that’s been thrown in my path in recent months.
I have to take it one day at a time. Anything more than that, and I’ll break.
Its hard for me to be this open about this situation, but I also think it’s good for me. I also want people to realize that, no matter how hard life gets, no matter how run down, run over and put out you feel, it could always be worse. We should be thankful for what we do have and stop dreaming about what should be. No matter what happens, at least I got to enjoy a few months of pregnancy and dreaming about being a parent. A lot of people don’t even get that much. It could always be worse. No matter what wall we are up against, no matter how hard life gets, we are all stronger than we appear, or feel. When you get to the end of your rope, you’ll be amazed at how much rope is left for you to hang onto.
Humans are incredible, strong creatures. I don’t think we give ourselves enough credit for that. Right now, that’s what’s pulling me through. That, and the fact that despite everything I’ve been through, I’m still here, still fighting, still healing and still looking toward the future. I’m incredibly proud of myself for that and it’s amazing all I’ve learned about myself during these past few months. I had no idea I was this strong until I had all of this thrown at me. Every time I think I’m done, that I can’t take anymore, something else happens. And every time I fall down, cry a bit, panic, and then pick myself up and move on. Because, despite it all:
With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
(excerpt from “The Desiderata” by Max Ehrmann)
And I refuse to forget that.
… now I’m going to go read a book and forget reality exists for a while.