Saturday, May 11, 2013

What Science Could Not Tell Me


 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.


Extranjera said...

Here's to Jude. Her maps is as good as anyone's.
Happy Mother's day.

K said...

Happy Mothers Day to you, my second daughter now 4 months has Down Syndrome and I totally relate to so many things you have said.
Enjoy your beautiful Jude x