Tuesday, June 24, 2014

Holding You In My Arms

When I got THE call two years ago, I was sleeping. Exhausted from pregnancy and four children, my afternoon naps where like a bonus check at the end the work year. I relished the quiet, dark room with the fan blowing over me, splitting through the hot summer heat. I would lie curled, my hands on my just swelling belly and imagine the world with Jude. I heard the phone ring as I was on that sweet edge before going under, and I heard H tell the kids to ignore it. And then I fell into the warm darkness of exhaustion. But there was a nagging feeling about that ringing phone, a tiny bit of fear that had followed me through out this pregnancy. When I woke up there was a message from my Doctor and I spent the rest of the afternoon and night scared. Knowing.

"Your test results show that you have one in four odds of having a baby with Trisomy 21."

I remember feeling like I couldn't breath. The air felt liked it was being sucked out of the room. I sat down, and held onto the table with one hand. I could feel the fear turning into hysteria climbing up from my stomach and I was only able to get out a question about what was next to the Dr. I had to end the conversation fast or I was going to fall into pieces.

"Well that depends on what you'd do."

Do? What would we do? I could feel my hand fall on my stomach almost protectively. As if I had to shield this life. Protect it.

"Would you terminate?"

"No. Not for Down syndrome." I said. My voice was sure. Stronger than what I was feeling.

A few weeks ago, I woke up a bit earlier than Jude. I was curled around her, and she was leaning a bit into me. She doesn't cuddle much anymore so I relish this bit of touch. Her eyelashes splayed on her round cheeks. The sun shone through the slates of the blinds washing Jude in warm gold light. And I thought back to that phone call. How the thought of breathing would shatter the room into a million fragments. The fear I felt once upon a time. And how now in this moment I could only think of that call as marking some of the best news I had ever received.

Sometimes I wonder why I spend so much time playing with the memories of Jude's diagnosis. I handle them like worry stones, feeling the smoothness of memories. Perhaps it is because Jude's diagnosis wasn't awful and it hasn't changed our life quite as dramatically as I had thought. Perhaps it's because I know Jude so intimately. All of my children share a closeness to me but it only Jude I have seen laid out. I know her chemistry in a way I will not likely know another human beings. How odd it is to be able to look at a piece of paper and the genetic make up of my child laid out before me. I still pull out the photocopy of her chromosomes and find that third mark. It is a mystery really. How these little squiggly lines shape the small human who lies besides me, her breath soft and warm against my chest. We do not fully understand these lines even as we have mapped them. There is so much that they can not predict.

I remember when I was first handed that paper. Jude was about six months old, and I was very in love. Past most of my fear even as I still held a few stereotypes. I saw that paper as a map. Now a year later, I realize that what I held was more of an outline. There was no room to show where Jude will go or where she has been. The route of her life can not be regulated to the neat formation of her chromosomes. There is too much not accounted for on that genetic lay out. A map is always incomplete anyway. It can show us directions but not what lies in those directions. But even with this idea of mapping, I can no longer look at those lines as anything but an outline to a great story.

I carry Jude in me still as I carry all my children. Science has recently told us that mothers carry the genetic material of all their children. It is something that I suspect we always knew in poetry. As I write this, I realize now that my feeling of knowing Jude so minutely is an illusion. As much as I feel I know her, I do not. I do not know who she will love, what she will do, who she will become. She, like all my children, is both known and unknown. And this is the great gift of having children, and of children having a mother. But I suspect that sometimes when we have a child with a label that is easy to think we can know them. That there are certain paths they will take because of the disability. I think we forget too much that they will pave their own way if we back off and let them.

All these jumbled thoughts do not fit coherently, I know, into a neat narrative. But it is what is running in my mind on those lazy mornings or when I am in the pool with a screaming joyful baby. They are with me as she climbs and scoots around the house. Perhaps the connection is that each day that passes more of my own ideas and expectations are shattered. I think that for awhile, longer than I care to admit, that I thought because I knew Jude's chromosomal count that I might have some kind of insight into what makes her up. It was a foolish thought, I know, and as time moves forward and Jude does things in her own way and in her own time, I am reminded again of the great mystery of all my children.


Danette Espindola said...

I enjoyed reading this. Thank you. BTW we have that same dollhouse!

Natasha said...

What a beautifully written post! The diagnosis is so much scarier than the reality. Thank you for sharing so eloquently.