Wednesday, February 20, 2013

Unveiling the Mysterious

When I became pregnant with Rowena, I was determined to embrace myself as a pregnant earth goddess. I would shunned a medicalized birth. I would embrace nature. My body knew what to do I decided, and I would enter the mystery of birth. I skipped all the prenatal tests because "I would not abort anyway." But really I just thought deep down that I would not have a baby with Down syndrome. Something like that couldn't happen to me....

Flash forward two years later, and I'm finding myself in a nurse midwives office, asking for ultrasounds and all the tests I can get. I'm almost 40. I'm scared. Because there is something inside me stirring and sending out whispering tendrils of "Yes this could happen to you." And suddenly I just can't stop thinking about Down syndrome. H and I debate about abortion if a baby has Down syndrome before my "risk" results are even in. I didn't know it was even an option and he assures me this is theoretical. Then we get the first call: 1:5. And now we have to decide if we're going to pursue even more testing. H is fro the testing but he will honor my decision. I talk to our specialist and he says "Well a lot depends on what you'd do."This is an euphemism for "Well if you're going to abort.' I tell him that we'd never abort for Tri. 21 but that we might consider it for Tri. 18. He suggests the amniocentesis, and we scheduled the procedure for the day I hit 16 weeks. I'm scared. Terrified of the thought of them jamming a giant needle in my belly. I also "know" that the baby has Down syndrome and I'm a mess because I fear this as well. I waver back and forth on the testing. If the baby does have Down syndrome I feel I want to know. Then I wonder if maybe not knowing is better because at least I can enjoy my pregnancy. One has to take into consideration the risk of miscarriage as well. It's too much, and right up until I am lying on the table, I am not sure if I'm doing the right thing. As most you know this is when we found out all about Jude, and her Tri. 21. And clearly we chose to not abort.

Lately I've been rethinking the testing dilemma. As I began to read Down syndrome blogs and participate in various online forums, I discovered there was much conflict surrounding prenatal testing. With the availability of a test that could could give more definite answers with just blood draw the controversy is heated. There is a legitimate concern that this kind of testing would lead to more fetuses with Down syndrome being aborted (the number is already very high). I had no idea that I was walking into such a storm. Initially I was a bit defensive of our choice but the more I read the more I could see the complicated ethical dilemma inherent in these arguments.

One of my favorite memoir writers on Down syndrome, Amy Julia Becker, has written a book about testing where she compiles not just facts and information but also personal stories. She has some of those stories up on her blog. They are worth a read as they cover a range of views including someone who tested and chose abortion.  This of course played into my own rethinking of testing, and then while answering a friend's question about the NT ultrasound and first trimester blood test I realized this was something I needed to write about.

You see in some ways the testing scared me, and scares me now. It takes away from the mystery that is birth. The ways that we can now see into the body with machines is a mapping of what used to only come through rifling through criminal corpses. Now we have machinery that does this work on our living bodies. I lay on a table and through a machine see the mystery that grows inside me. With the help of a long slender needle, the mysteries of my baby's genetic code are laid bare in a Petri dish. It is an awesome and terrible thing.

But that said, I have discovered that the mystery is still there. Despite all this biological mapping, there is no way to tell what is the essence of Jude's being. Because it is not her Tri. 21. The mystery of Jude will unfold throughout her life shaped by culture and biology. By things that I can not see or control. No tests can tell me that Jude will be happy or sad. No tests could have predicted that the love that we all feel for her. The beauty she brings to our lives. Just as not test can predict that for any unborn child. Yet, people chose to abort for these things. When they hear the words "Down syndrome" or Trisomy 21, they make decisions as if there is no mystery. That is a tragedy and something I will address in the coming weeks.

My question to myself, a question I feel I have to probe because people will ask me my opinion is "Would I test again?" And the answer, at least right now, is yes. I would test because of a blog post I read when pregnant with R. I won't link it or even mention her name because it's not important. But the story was so heart breaking and so sad. I sobbed hysterically when I read it. I felt I could never ever bear the pain she bore. To have a perfectly healthy baby with Down syndrome was awful! And when they offered me that test when I was newly with Jude, I knew that I did not ever want to feel that when I looked upon my new born child. I wanted to get all of that shit out of the way before I held her in my arms. I wanted our children to know and not be afraid. I wanted the gift of preparation. To read how others felt, to allow myself to feel the dark ugly things while not looking at her face.

And it was a hard burden, I tell you now. It is no easy thing to carry this knowledge and to not be able to look upon the face of the mystery inside yourself. I had bought a lovely journal and I could not write in it. I could not touch those feelings then, the exposed nerve endings of my soul.

When I saw Jude, it was still a little shocking as if a part of me had still thought a mistake had been made. But I never looked at Jude and felt her awful. Now I know there are many many women who are given a birth diagnosis who do not feel as the author I read felt. And there are just as many women who get a prenatal diagnosis and do not grieve as I did. This is why it's important I think for women to read these stories, to listen to the different voices because ultimately it is about the choices you will make and which great mysteries you will choose to unviel and those you will leave covered.

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