Monday, December 24, 2012

Take a Sad Song and Make It Better

Note: I wrote this when we first found Jude had Down syndrome which is when I was about 16 weeks pregnant. I'm posting and then adding some new commentary at the end.

This is Jude. Beastie 5, and our fourth girl. Despite the blog title and what you think, she is not named after the Beatle's song. Instead she's named after St. Jude with whom I cut a deal with on the eve before finding out her gender among other things. St. Jude the patron saint of lost causes. Seems like a strange saint too as Jude is not a lost cause but St. Jude has been my go to ever since meeting my wonderful mother in law. He was familiar and safe and that was what I needed. I was so scared she was dead when I lit that candle on Sunday night that I found myself making deals with the supernatural...again. "Please St. Jude, let her be alive. If she's healthy and alive I'll name her for you."

Everything with Jude seemed okay. At first. At our initial ultrasound, she was measuring small but it made sense in terms of when I tested, etc. I opted for early testing which involved another ultrasound. Piper came with me and we laughed at "Skippy's" (Piper's name for the fetus) antics. She was rolling around, standing on her head, and just being super active. I felt her rolling around very early on, and was reassured by her energy. But there was something there at the edge of my mind. I had never tested with the other four kids but here I was testing. It's my age I thought to myself.

Then we got the call. My results from the first trimester blood test had come back with a 1:5 odds of the baby having Down syndrome. That's a really high risk. Really high. It was hard to find people on the Internet who had such a high risk. We scheduled an amniocentesis. I was devastated. I sobbed and cried. I got really angry at God, at the universe, at the world. I felt like I was being punished for wanting too much. I mean come on I already four children and this is what happened when I pushed for five. I knew this was not a diagnostic test but I was convinced that it was and lived my life with that conviction. For two days, I cried. I researched tons of information and tried to bolster myself with some hope. Her nuchal neck count was 2 mm which was normal. The Dr. had not mentioned anything about her nasal bone and I scanned her ultrasound pictures hoping I could fine the bone. But deep down I was convinced she had Down syndrome, and frankly, I was utterly devastated.

The three weeks before the amniocentesis was spent trying to distract myself from the abyss. I read vampire trash, swam with the other beasties, mucked out my house. I knew I couldn't abort if the results showed Down syndrome but I also didn't know how I was going to be able to function with a disabled child. When it was dark, I laid awake, listening to the soft breathing of R. "She is so perfect" I would think, and then start to cry because if the baby inside me had Down syndrome would I think she was perfect? 

A week before the amino, I stopped feeling Jude move. Because I was also at risk for Tri 18, I believed she had this much more severe chromosome disorder and that she was dead. I tried to not think about it but it was always there. My baby is inside me, dead. I am not carrying a living thing anymore. 

My mom came down Sunday and on Monday accompanied me to my appointment. I wrapped my white rosary around my wrist, and brought a Mary card with The Memorare on the back. During the hour I waited (yes an hour), I prayed that prayer about ten times. Mary was a mother, and she had lost her son. I felt very close to her as I sat there waiting for them to jam a giant needle into my womb. I wavered even then if I should have the test or if I should just wait. 

When we were finally called back, I was near panic with fear. I wanted H there but for some reason I had pushed him away that morning. I fingered the rosary and said the Memorare a few times, as the tech readied the machine. And then there was the baby, moving around, heart beating perfectly, and I started to sob.The baby was alive. Suddenly, Tri 21 didn't seem like the worst option possible. What mattered in those few seconds was that the baby was kicking, swallowing, pumping blood through her tiny heart. The tech was very through but acted impatient with me, and kept saying "This is all really hard to see at 16 weeks. We usually do these tests at 20 weeks" and then "If you choose to do the amniocentesis..." It was clear that she had no idea why I was there. I finally said "Um..we are here for the amniocentesis." And then my mom said something about not aborting for Down syndrome and the woman again acting very annoyed said "Well you have two soft makers. She has no nasal bone and her bladder looks bright but we'll have to ask the Dr. what he thinks." And then she left. I cried and texted H the news. I told him the baby was a girl first because I knew he was hoping for another girl. I softened up for the blow...not just high risk but two soft markers. The Dr. came in and performed a careful but really long amniocentesis which really did feel like having your blood drawn. The worst part was that because he was so careful I started to cramp up from being in this odd position. He refused to speculate on the soft markers but the lack of a nasal bone confirmed what I had accepted three weeks ago.

We got the call Wednesday. Jude has Down Syndrome. Initially I just felt relief from knowing. I cried a lot at how kind my friends here were. And when I started to reach out to the Down Syndrome community, I was drawn right in and welcomed which made me cry. But really I was also crying because I thought Jude was not perfect. I was crying because I was not going to have a "typical" baby. I was crying because I was terrified of the future. I was crying because I was worried about how her care would effect the rest of my family. But then I didn't dare express those feelings. H and my mom were so positive and supportive. H already loved Jude with the fierce passion that he loved all the beasties. I loved her but that love was shadowed by grief and fear. 

Over the last few days, I've swung between despair and hope. There is so much unknown in this equation. Jude could be perfectly healthy. She could go onto do college classes. To read and to write. To have her own life. She may not have very obvious physical markers of Downs. But she could also have the opposite of all these things. And I would be a fool to not worry about how this will impact my family. But I can't terminate this pregnancy. I love her. She is present to me, to my family. I am not going to make any political stands here but for me, for us, this is simply not one of our options. I find myself wishing I could go back in time, and not conceived. I still have to war with feeling like I'm being punished. 

What I do know is that Jude will be loved deeply and passionately by all of us. One thing that has come up again and again is how close and strong our family is...and it's been confirmed by so many of our friends. I

I have faith that our family is enough to take the sad song that is twining through my heart right now and make it a better song. Maybe not always a happy song but not always a sad song either.

Now...future tense...the other night I'm lying in bed. I've just nursed Jude, and she's sleeping in my arms next to her big sister R. They are both beams of light...beautiful and perfect. It never occurs me to think of Jude as anything less. Jude's song is not sad. It could be perhaps but somehow, right now, it's not. I just told some friends that I am laughing, ever so gently, at myself for these early fears. These fears that I wouldn't love her. In the first moments when she lay on my chest, all these fears rushed at me and then she looked at me...even across that distance I was feeling through all that emotion...she was mine and the fierce love that I felt for all my children was there. I would not let her down. 

Her difference is the difference I see in all my children. They are mine and not mine. They are the same and they are different. This is the nature of humanity perhaps. We focus perhaps too much on what separates us or binds us. I suspect Jude has much to give us in terms of understanding our common humanity, and I suspect we have much to teach her as well. This is the nature of love and family. 

Here's to having something extra!

Thursday, December 20, 2012

Beams of Light

"There is a crack in everything
That's how the light gets in."
Leonard Cohen's Anthem 

After four children, I have learned that my expectations are not always my children's expectations. With each child, I can't help but package up my hopes and fears into little bottles to store carefully. And as these wee beastie babies get older, they push the bottles away, casting them to the ground. Sometimes these bottles are hopelessly crushed, beyond repair. At other times, I am able to glue them together into something new, something that is a bit of my desire and a bit of their desire. They are cracked and not so perfect but that's okay because that is what it really means to be in a relationship with other humans. When it works well, we are not wed to what we desire but rather we merge into something that is sort of like compromise but more like hope. 

Jude was born really quickly on Sunday evening. I had been having contractions all day but didn't time them as they didn't hurt and weren't regular. By three, I was starting to get nervous because they weren't stopping. I had H drive to me a gift giving event (the community here in Athens put together a really wonderful plan to help out each other with Christmas gifts). When we got home, I decided to start timing and got on the yoga ball a friend loaned me. The contractions were starting to hurt, and the pain intensified really quickly. One minute I was able to breath through them, and the next, I was almost moaning. H got ready, and as we were getting ready to walk out the door, I was already in my labor trance. I was yelling at H to hurry because I knew it was going to be fast. We had to drive even though we had planned on walking because it was pouring out. I rode on my knees, hugging the seat and begging H to hurry. He kept asking for directions and I could barely talk or think. The short walk from the parking spot to the elevators was interrupted by two really intense contractions (there was an old man waiting for an elevator and he looked totally painced when he saw us coming...lucky for him I had to stop to breath through a contraction). When we hit Labor and Delivery, I could no longer talk and was sweating. I made it to our room, sat down on the toilet and my water broke. I got up and announced "I have to push NOW!" And I did. About four pushes later we had Jude.

We knew Jude had Down syndrome. And I thought I was prepared. Those bottles remember. When I looked at her all I could see was the Down syndrome, and it was a shock. It was a crack in my expectations of how I would react. Of course it was not the shock, a woman feels with a post natal diagnosis but I wasn't expecting it to be a shock at all. I didn't feel like I didn't love her, or that she wasn't mine....I just felt this distance. I am aware that this could be from the shock of such a quick birth (I thought we had at least a few hours to go) but I'm honest enough to admit that some of it was the shock of seeing those features, and sadly my inability to see Jude. But as the night wore down, and H stopped his usual baby hogging (that man loves a baby and it is, in my opinion, one of his sexiest attributes), I was able to just be with her. I first noticed that when she was sleeping she pursed her lips into a little kiss just like R used to as a newborn. When she was getting ready to squawk, her face got all red and crinkly like Piper. The shape of her lips were similar to Camille's and her tiny size reminded me of my sweet first born, Umberto. And as the night turned into the day after, the light did come in, and suddenly Jude wasn't the face of Down syndrome. She was Jude. The beastie who completed our family. She was what we needed and were waiting for even though we did not know it.

Jude does have Down syndrome but that is not her only qualifying characteristic to being human. She, like the other beasties, will surprise us with her own expectations of herself and her world. Her light, shining through my cracked bottles, will join with the light that we already have let into our family.  She will have different, sometimes harder, challenges of course. We are not naive. But we are hopeful, and we all feel pretty damn lucky that this sweet baby has graced us with her life. I hope that we're worthy of such grace.