Friday, October 19, 2007

The American Idea

I am looking at the American Idea through a long lens trained on the life of my daughter, which lasted 29 days, and its aftereffects.
My parents are immigrants and when they got here, they (like all immigrants) hit the ground running. In raising me, they imbued my consciousness with all the things we all assume when we think of this singular idea of our country. It is, after all, the essence of the American identity, which I embodied for them. They told me I'd be the first woman president of the US (though mercifully it seems I might be beaten to that punch). I was told in school as evidence of my specialness that "God don't make no Junk!" For me, the takeaway was that a future dutifully-planned and carefully-examined would lead to a good (i.e. stable, prosperous and happy) life.
In the wake of my daughter's death, I think that my utter disbelief and disappointment is in part a response to the horrible realization that I won't have a straightforward happy life. The most basic assumption about my path, no matter what equivocating I might have done on the surface of my consciousness is shattered.

Wednesday, October 17, 2007

For the Memorial I didn't know existed

Here's the draft as it stood on Sunday, the day I was supposed to give the talk that I thought I was giving in two weeks....sigh...

Hi. I'm Audrey. I would like to share the story of my daughter Eva with you.

In this place of white-knuckled anticipation, I spent the last 11 weeks of my pregnancy waiting for the birth of my daughters. They were monochorionic monoamniotic twins, meaning they shared an amniotic sac, which is a dangerous, albeit cozy way to spend the prenatal period. Complicating matters further, Eva was diagnosed with a complex heart defect called Hypoplastic left heart syndrome, meaning her left ventricle was underdeveloped, which is fatal if left untreated.

In this place of redemption, my daughters were born at 34 weeks, 6 days gestation, a time of my choosing, offering a tenuous balance of risks. They were smaller than we thought they would be, but they surprised us in other ways as well. Most notably, Eva's heart was in far better shape than anyone anticipated in utero. She was not treated as a hypoplast and the 3-stage surgery that seemed a certainty no longer was. Over the first days of their lives unfolding, we received the best diagnosis possible, short of "Oops, did we say there was a heart defect? Our bad." That said, Eva's heart was not normal and she still required a surgical repair, but a less drastic one than we'd been prepared for. We were eager for her surgery. In the days leading up to it, Eva was starting to struggle to breathe and we wanted to get past that phase and have her on the road to recovery. Onward and upward! The night before, Dave and I were with her in the NICU, there were a number of people there surrounding us, we were all so positive and happy. I was holding Eva and she was happy to be held by me, I think. We had been at the nadir for so long, that we were anticipating relief at the upswing we thought we'd be starting.

Then the next morning, day of surgery, I had a minor car accident and failed to make it to the hospital in time to walk Eva to surgery. I was calm about it because I never seriously considered that there might not be a happy ending. After all, the doctors had never seemed as confident about Eva's chances as they had the night before.

But, in this place of avalanches, Eva arrested on the operating table before any repair had been done. It was, of course, one of those terrifying transformative moments. The happy calm of the staff surrounding and supporting us became the sounds and the sights of the center ceasing to hold in an outcome we never suspected. I will never understand why but with that catastrophe we began the process of losing Eva and the discovery of what a nadir really feels like.

Later, there was another arrest, another operation, blood, kidney failure, lung collapse, horrible swelling. Torture, in other words. We just didn't see it. We just believed our baby was a fighter and would make it and so we didn't do our basic job. We didn't protect her or save her or even hold her while she died. Only after.

And in what now feels like another spectacular failure of mothering, I stayed home the day before she died. I had gotten a cold and I didn't want to risk getting Eva sicker. She had a long road ahead of her (we thought) and infection was her biggest risk (we thought). So, I stayed home. Dave was there and reported back that she had had her best day post-surgery. Until.

"I don't think we can get her back" were the few words that ushered in the vast hollow of life without Eva. Once we got the phone call summoning us to the hospital on that night, I felt as though I was standing between two sets of train tracks. At the moment of her death, I felt as though trains were passing on either side of me, overwhelming me, threatening to level everything in our life.

In her 29 days here, in this place of possibilities, Eva fought like hell. Even before she was born, she revealed herself to be a tough little kid. She was the one who pushed and kicked and squirmed during all the sonograms and non stress tests. She climbed over her sister at one point, not content to keep to her side of the uterus. Once she was born, the precious few times we held her she sank into our arms, telling us that she needed us and causing us to recognize that she was more than her tiny mass. She was 4lbs 9oz at birth and never really got any bigger. She endured so much and I regret it all. We never questioned the path we committed her to until its futility became clear to us only after she succumbed to trauma after trauma. But we were just accepting what had to be done to have her home with us. We believed absolutely in her recovery, so much so that it was 3 or more months before the shock of her absence finally gave way to despair. I remember saying to Dave the day she died, or maybe the day after, "I miss Eva" as though she were away at camp or visiting Grandma.

In solitude, I wake every morning attempting to map the boundaries and terrain of grief, looking for its edges which don't seem to exist. I am trying, have been trying to put words to a situation in which words fail utterly, and yet I want to talk and could talk for hours. There are so few opportunities to celebrate and mourn Eva openly. At first, our friends and families surrounded us with love and support. Basking in that warmth, we initially sought out people to see and talk with. But we had no idea how quickly time would force us to close the book on Eva, at least outside our closest circle. We've become marked people, the ones with the dead child and few if any dare breach the wide perimeter of pain surrounding us. Eva's absence is a tangible thing, a large piece of cold, raw and rotting meat. I can't cook it and I can't eat it. It's an albatross that is to be carried.

If you didn't know about Eva, if she'd never existed, we would appear to be the American ideal of the nuclear family -- 2 parents who love each other, who've had a long and relatively uncomplicated relationship, with their 2 kids - 1 boy and 1 girl, healthy. We got exactly what we wanted but there's hell to pay. I feel as though I walked out of a Greek tragedy meant to warn against hubris and the folly of thinking you're in control of your life. And now we can spend eternity longing for Eva, wishing things had been different, willing to suffer any ruin to have her back, the presence of her identical twin amplifying everything - giving comfort and underscoring our loss in equal measure.

In this place of beginnings and endings, what we all share is the ultimate disappointment, the nuclear weapon of outrageous fortune -- that our children will not all survive us. Our babies – the best of what we offered of ourselves to the world-- are gone and we're a little diminished. I can only hope that while this sorrow is permanent, it doesn't crowd out all else. Over time, we must try to scratch out a place of peace, however tentative and uncertain.


The memorial at which I was to speak took place on Sunday. I didn't speak because I didn't know that it was on Sunday. I was upset, to say the least. I still don't know if the fault lies with me or someone else, but it hardly matters. I was mortified and hurt and disappointed and so on. It sucks because it was a missed opportunity and because I let people down (albeit unintentionally), but so be it. There's not much more to say.

I did make it to the hospital, though. The man had hernia surgery today and I made a quick visit to HRP, my heart in my throat as I did. I saw one of Eva's neonatologists, Dr. W. She was being seen at the Antenatal Testing Center and was like a fish when I saw her regarding Eva. But at least she remembered us. That's something.

I didn't get to see many people I would have liked to have seen. And today I feel more wistful for Eva than despairing. The boy told me this evening that he dreams about Eva every day and he asked me if she will grow. If only.

But hey, at least the man's surgery went well.