Cycles

July of last year I could have been having a baby instead of finding that the baby I carried had Tri. 21. In October of 2011, I had tested and found to my great joy that I was pregnant. You see, I had wanted, felt intensely that we should have one more child after R. When I found out that was I finally expecting a baby, I was nothing but overjoyed. For a week, I felt like I was floating through life. There were names to debate with H (I was sure this baby was a boy). Day dreams about a baby to nurse and snuggle. Another life to bring into the beastie fold.

And then just as suddenly as it had happened, it was over.

All my plans mocked me. The tiny baby clothes I had started to slip out of storage lay abandoned. I could not bear to see them. Each day getting out of bed felt like the biggest chore. I slugged through meal making and child care. I gave the barest minimum and spent most of my days lying in bed sobbing as I nursed R. I wanted to be over the sadness. I told myself "Good god, woman, you were only a few weeks along. Snap out of it." My pain was a barrier that kept me from everyone, and I already felt horribly isolated here in Athens.

Finally there was a day when I didn't cry. And slowly, I walked out of the fog and back into life. The sadness was still there, and the mourning I suspect will never leave. A friend encourage me to name the baby, and even though I felt I didn't deserve this act, I did. It helped. The baby had a name, and I could carry him with me. I packed away the baby clothes.

One day, I realized we weren't going to have another baby, and I began to make plans to get rid of the clothes. I sobbed the day I sorted through them. But I felt like I was only wanting a baby because I felt loss in life. I wasn't sure what my future plans would be. I felt kind of aimless. Having a baby would give me something to do. A purpose. Or so I thought. That was a shitty reason to have a baby.

And then I found out I was pregnant. Again. I must have took a dozen tests over a two week period. Over time, I began to hope just a little that this one would stick. I never let go of the fear though. Every morning, my first thought was "Is the baby still there?" Every twinge, every odd feeling lead to hours of worry, Google searches, and lots of anxiety. But despite myself I began to dream for this baby. I started to pull out the little sleepers, and make wish lists on Amazon. Eventually we started to choose names. Phoebe for a girl. Leon (Leo) for a boy.

Then I got the call that put a minor road bump in all those dreams. What I don't often tell people about that call was that our risk for Tri 18 was also high, and it was ultimately why we decided to get the amino. We were fairly sure we'd terminate for that disorder although not for Tri. 21. I can't tell you how hard this time was between that call and the long weeks until the amino. I had finally allowed myself to open up to the joy of this baby and now I was facing losing he/she. I cried a lot during those long hot summer days even as I tried to bury myself in things to make me forget. But it was impossible to ignore those first small stirrings. The starting swell to my belly.

At some point, the stirrings stopped or at least I couldn't feel them. I convinced myself that the baby was dead. It was even more horrible than the first time. I cried and cried. I no longer cared if this baby had a trisomy. I just wanted the baby to be alive. All that matter was that she was alive. I started to hope she had Down syndrome because that was the surest condition to guarantee her life. But deep down I felt like she was already dead. I just knew that when they ran that wand over my belly there would be no movement, no heartbeat.

So of course I started making deals with the supernatural.

When they ran the wand over my belly, and I saw that baby (a girl they said) rolling around, kicking her little feet, waving her arms about, I started to sob. The tech was pretty disgusted but I didn't care. Jude was alive. That was the shift for me. Jude being alive was by far more important than an extra chromosome. It was the beginning of a thought journey that would eventually lead to where I am now. Jude was alive, you see, and that meant day dreams, amazon wish lists, and little kicks to keep me awake at night. While I still had a way to go in my acceptance that she was going to be just fucking fine, I was beginning because I had lost once before. The pain of that lost, the absence of that presence will always be with me. The thought of there being two such losses was unbearable. I could live with an extra chromosome, and while I could of course live with the pain of two losses, I knew which scenario I'd prefer.

You see Jude is special to me not because of her extra bit. She's special because she's here. In my arms, in our family. When I say she's just another beastie that's what I mean. She is another being to add to this wonderful family. Our last child. Our full circle. She made it, and I don't give a shit what she brought along with her. It doesn't change any of the dreams I had while gestating her. She will of course not follow my dreams. She'll follow her own just like the other beasties. But it doesn't matter. The dreams are just ways of opening up for the presence of another in our lives.

What Science Could Not Tell Me

chro·mo·some

 noun \ˈkrō-mə-ˌsōm, -ˌzōm\ any of the rod-shaped or threadlike DNA-containing structures of cellular organisms that are located in the nucleus of eukaryotes, are usually ring-shaped in prokaryotes (as bacteria), and contain all or most of the genes of the organism

Today, I got a rather unexpected Mother's Day present. Below is the road map of Jude. When this map was

spelled out, she was a fetus in my womb, and I was at home, crying myself to sleep because I was afraid of that third squiggly line over the number 21.

I find myself a little awed as I look at this road map. Awed in a way that I couldn't imagine when the Dr. first called me. This is Jude in her most basic mapping. Science is a wonderful thing. Because of science, my doctor was able to stick a giant needle into my belly, draw out some fluid, send it to a lab where they tested 50 cells and found in them the most secret aspects of Jude's being. 

Knowing that my baby carried an extra chromosome in the 21st trisomy, told me a great deal. I knew about the health risks. I knew she'd be intellectually disabled. She might not be able to hear or see as well as other people. I knew that she might never be independent. And I was filled with fear. I already had four children. Two have minor disabilities. I feared what having another child with disabilities would do to my family. Would we be crushed beneath the burden of care? That third haunted me for many months because ultimately with all that science could tell there was much science could not tell me. It could not answer these questions.

Now as I approach my 13th mother's day as a mom, I am thinking of how I'm going to frame this piece of this paper as a reminder that this a map not a narrative. A blueprint as opposed to a house. I am glad I got to see this almost five months into my journey with Jude. Now when I look at this stark black and white page, I am reminded that in a narrative there is more to tell. 

What this map could not tell me was that Jude would be beloved by us all. She would be her father's delight as were all his children. H would  show me a side to him that I did not know even after 13 years together.

I did not know that her eyes would be filled with that look of old wisdom that all my babies seemed to possess. That when she was born, they would lay her on my chest and she would be the first of my five children to look up at me right from the beginning. And in that look she placed her faith and trust in me. 

I did not know that she would like a clone of her sister Piper. That her nose would be a delicious nub of adorable. 

I should have guessed that she would have an interesting and complicated relationship with her sister, Rowena. This is a story that is only beginning to be told, and I am sure that it will be as filled with beauty and anger and frustration as is the story of Camille and Piper.

No test could have predicted that Piper would find in Jude that dangerous and beautiful love that shakes your world and changes your being. In Piper, Jude will always have a champion, a cheerleader, a friend.

Science could not tell me that when Jude smiled her whole face would transform into a flash of joy. That her laugh would be a hard bark of sound that makes us dissolve into giggles which in turns feeds her laughs. 

There is no test that could predict that Jude has already mastered the sardonic beastie gaze that just drips with incredulity. "You want me to smile? Right now? I don't think so."

I did not know that Jude would show determination so early. That I would come to admire her sheer will to do. 

And mostly I did not know that Jude would reveal things about me that forced me to change. Jude has brought out in me a fierce side but also a hopeful side. I am outraged but I am filled with courage, hope, and the light of a battle worth fighting. Because I had thought such horrible things and had changed so I know others can change as well. Really all I needed to know was that Jude was as human as the rest of us.

On this Mother Day's, I am blessed to have seen the earliest road maps to one of my children. It is a thing of amazement. But the greatest gift, is the gift of narrative. I have been privileged enough to be allowed to participate in the narratives of five amazing human beings. I have chronicled their joys, fears, and frustrations. I have documented the changes that have shaped me over the last 13 years. I have confessed my failings as I failed them. And just as often I have shared in the triumphs that come from those moments of understanding and connection.

What I did not know when I mourned over that map was that Jude would bring her own gifts and struggles to our lives. With Jude, I have learned that sometimes you can not linger on the future. She has made aware of how sometimes living in the present, in this moment be it beautiful, or filled with vomit, poop, seizures, constant hand washings, sly tantrums, screaming, scratching, fighting, is the only way to be. To be alive with the wild abandon that living a life with no limits allows.