Tuesday, September 26, 2006

The Bug

When we first went to the doctor after we found out about The Bug (or Baby E to be, but we call it The Bug) they asked us all these questions about our family health history and we answered no to all of them, for about seventy trillion diseases, most of which I had never even heard of. For some reason I had forgotten to write down on my forms or even to bring up that my sister has Down Syndrome until well into the interview and then when I remembered and casually mentioned it the whole tone of the thing changed and we all of a sudden found ourselves signed up for ALL THE TESTS, including the very scary very often wrong test that tells you nothing more than that maybe you need to have more tests but which again, is very often wrong. We went home to freak out a little about that test and to ask Dr. Google if a sibling with Down Sydrome means you have an increased risk of having a child with Down Syndrome. (the answer is unclear, but probably no, you don't have an increased risk, since 99% of the time it isn't handed down genetically, it's a chromosomal problem). It never even occurred to me think about any of the other tests we took, I was too busy emotionally preparing myself for the big scary often wrong test to be wrong and scary and tell me that maybe The Bug had Down Syndrome.

So my doctor called me at home yesterday and the first thing she said was "We got your tests results back." And when your ob calls and tells you IN PERSON that she got your test results back, the first thing your brain thinks is "Oh fuck." Let me just assure you that it is never good news when the actual doctor calls with actual test results.

The point of all of this is that my Cystic Fibrosis test came back positive. This means that I am a carrier of one mutated gene that if combined with another mutated gene (from the father) causes CF. I don't have cystic fibrosis because it's only one gene, not two, and unless you get two mutated genes, you won't have CF.

So Mr. E has to take a blood test. If he doesn't have the mutated gene, then our child has no chance of having CF. If he does, then there is a 25% chance that our child would have CF. Supposedly the chances that we both have this gene are 1 in 841. I have been assured that these are Vegas odds, somehow they sound terrible to me, but I am trying to remain optimistic, even though I am also sort of freaking out. The extra fun part of all of this is that of course the CF test is the one that takes two weeks for results to come back. So I am imagining that the next two weeks will be super fun. So far it's been a laugh riot.

I told someone yesterday, "I'm not even a parent yet and this already sucks." I am trying not to worry - everyone says not to worry. The chances are very low. But I really don't know how not to worry. I do know that this won't be the first time I've needed Mr. E to get us out of the crap I've gotten us into and that if there's anyone I can count on to rise to the occasion it's him. And that even if the test comes back positive we will deal with it together and we will do whatever it is that we have to do and I know Mr. E will be there for me no matter what. I do know that for sure. There's no one else I'd rather have by my side going through this with me. No one else.

I feel like a selfish and ungrateful person for saying this but the thing that keeps running through my mind is that I just don't want to be dealing with this. It sounds stupid to say but until someone takes your normal no scare pregnancy away from you, you don't appreciate it. Now I just want normal back. I know many parents out there are dealing with worse and that this is a tiny scare compared to real life every day for some people, but I still can't help that what runs through my head every time I think about this is "But I don't want to be dealing with this. I DON'T WANT THIS TO BE HOW IT IS. I don't want this."

Even though so far I am the one with the sucky gene and so this feels like all my fault, it is important to note that I recently bought my first fasten in the front racer back bra and I can only put it on if I lay it on the bed and back into it, such is the confoundation (is that a word?) that my brain encounters every time I try to put it on any other way. So I am sure that in addition to my sucky genes I have also passed along some super smart smarty pants genes to this kid.

BTW, the other scary often wrong test came back negative, so there's nothing to worry about there.

1 comment:

PastaQueen said...

A couple months ago, on the day of my aunt's funeral who'd died of cancer, my uncle's wife got a call from her OB/GYN saying her tests had come back abnormal. I don't know if there was possibly a worse day to tell someone that. Then she had to play the waiting game too while they scheduled another test and eventually diagnosed her with endrometrial cancer. She had a hysterectomy and is fine now, but I think that period of waiting and not knowing was worse than recovering from having her uterus removed. I think she ended up cleaning a lot to distract herself. You just wish you could hit the fast forward button on life and skip to the part where you find out the end. Good luck and I hope the test results come back in your favor.