Draft for memorial

The last time we were here, in this place of avalanches, we'd just laid eyes and hands on our daughter, Eva, for the last time. It was April 4th and our daughters were 29 days old. I'd always intended to come back here and get Closure with this place, in which I spent 79 days before being released on my own recognizance. In times like these, Closure, like control, is a mirage that evaporates as you get too close.

Here are the facts: After a false positive screening for neural tube defects, I was diagnosed at 18 weeks of pregnancy with monochorionic monoamniotic twins - meaning my girls shared an amniotic sac, one merciful step shy of conjoined twins. At 20 weeks, I found out that Baby B also had a heart defect -- Hypoplastic left heart syndrome, meaning her left ventricle was underdeveloped, which is fatal if left untreated. Because of the rare form of twinning we had, which could result in cord accident and death for both girls, I was kept in the hospital for monitoring of the babies after they achieved viability at 24 weeks. Once they were born, however, it looked as though 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. We received the best diagnosis possible, short of "Oops, did we say there was a heart defect? Our bad."

But there was still a defect and its effects would become more apparent over the coming days. So, 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, my husband 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 considered that there might not be a happy ending. She arrested on the table before any repair had been done. Everything changed. 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 was finally making urine and 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, trains passed on either side of me, overwhelming me, threatening to level everything in our life.

In her 29 days here, 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 on 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 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.

We're here to try 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, no matter how much we might want them to. 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 dating back to their teens, 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.

I wake every morning attempting to map the boundaries and terrain of grief, looking for its edges which don't seem to exist. I saw a couple in their 90s on TV recently, crying over their daughter who lived for mere hours more than 60 years ago. They haven't found the edge of grief either, apparently.

More than 6 months on, I have good days (when we're together and happy) and bad ones (when cheerfully worded medical bills arrive at home long after her, weighing now more than her),. Like an adolescent trying to make accommodations for some disappointment, I still fantasize that it was a mistake and Eva will somehow find her way back to us, but I held her dead body until it turned cold and blue. Finality it its purest form.

What we all share is the ultimate disappointment -- that our children will not all survive us. Hope in the form of our child has been crushed and the future is diminished permanently. I can only hope for now that while this piece of sorrow is permanent, it doesn't crowd out all else. Permanently, but not completely.