10 months

Dear Eva,

I miss you still. I don't feel as though I can talk to anyone about you without feeling guilty. I'm not sure where I can turn, so I'm turning to you directly. Maybe the energy of you and my love for you have combined somewhere in the universe. If only. Eva, when I see your name, I am paralyzed. Eva, when I think of you, my throat constricts. I am sitting at my desk at work and I cannot do anything but long for you and try not to let that longing crush me.

This weekend, I baked cookies and ran for the first time with your brother and crawled around the floor with your sister, teaching her to walk. We watched the Superbowl (or part of it) together. Every good thing is diminished without you.

This weekend, I kept thinking of our drive to the hospital while you were dying. Your absence is the worst sort of violence.

Big Days

Saturday, January 19th, was a big day for the girl. Her first tooth finally broke through (beating her brother by 7 months). She finally figured out how to crawl forward on her knees to where she'd actually like to go. And, she went to her first Hoyas basketball game. It was not her first sporting event. That was a minor league baseball game in September. But our annual Hoyas game is a tradition that we enjoy. And she lasted almost through the whole game. We have yet to make it to the bitter end...

The girl started daycare full time today. After weeks and weeks of looking for a nanny, we finally accepted the fact that we needed to expand our search. We found Ms. E and her home daycare. She has 3 other kids -- her daughter and two siblings. I hope the girl does well there, but I suspect that we will be the disease vector, not the other kids. We'll just have to see. I hope perhaps we make it until the girl can go to Win.wood. Otherwise, we may have to go back to the drawing board.

Life is for the Living

And today, the boy marks the end of his 4th year on "Earf," as he would say. He's a smart and funny kid. He is high-strung, energetic and naughty. His memory is crazy. And he's quite intuitive. Last night he was hitting his head a little with the heel of his hand, as (I admit sheepishly) I have done out of frustration a few times. Yes, I am totally batshit, but that's another post. We asked him about what he was doing and he said, "Mom does this when she's very upset." and we probed him further for how he feels about that. He replied, "I feel very sorry for Mom."

Well, last year the boy's birthday party was a few weak cupcakes eaten in my hospital room and if that doesn't suck, I don't know what does. So this year....

Fancy-pants cupcakes from a bakery in a superhero theme at school. Thereafter, we'll be painting t-shirts. He will then be taken out to dinner at a restaurant of his choice. He chose Red Ro.bin. At some point, he'll get his present from us, a digital camera and when we get home, he'll hopefully see a big box on the doorstep -- a new blue electric guitar. And, on Saturday, we'll have a dinosaur-themed party at home. Unfortunately it will be mostly grown-ups and babies, but so be it. I hope it will be a birthday worth keeping in that steel-trap of a brain he's got.

We're all about onward and upward.

You don't know the half of it

Everything everywhere Eva-related can stop me [dead] in my tracks. I'm not "out" at work yet as a grieving mother. The truth is that for everyone but me it is old news. At least, that's how it feels. Even with my mother, on whom I have leaned so heavily, the welcome is worn too thin to hold this weight. Even my own mother has told me in not so many words that it's time to get on with life as it is.

So making it news, disclosing to new people that Eva lived and lives still in me is difficult, if not impossible.

So when a new coworker told me that she does not envy me in my working motherhood, I couldn't help but think, you don't know the half of it. I am trying to mother a dead girl.

Your Eyes and Mine

My mother says I'm torturing myself by not letting go. Maybe that's true. But I keep finding new ways to unfold the soul of you that I carry. I keep raking through new and old forms of grief and I don't want to let you go. I want to finally peel back the covers to the place where you are and I cannot accept that it doesn't exist. It is harder to live without you than it was 6 months ago. I didn't know when you died that I would never see your real eye color. I didn't realize that we 5 people, my precious family were never physically together. I never had that precious moment of holding both my babies together.

Monday, I realized that I have a photo of you on my phone, which would be lost if the phone were ever lost. So, I e-mailed it to myself and I found that in that photo, your precious eyes were open. It is probably the only photo of you with your eyes open. I want to dissolve into its pixels.

Today I saw an article that said that the US ranks last amongst industrialized nations in healthcare. I wanted to read it but couldn't. All I could think of was you. Today I also learned that a coworker's daughter is named Evelyn. I immediately thought....Evalyn.

My mom always tries to suggest that you would not have been healthy if you'd lived. NONSENSE! In my heart, you would have been the beauty and light that the girl is. It is nothing short of cruelty and misery that has taken you from us. And anyway, maybe it's not logical but I would do anything to have you in any form. I didn't think that before, but ...

I wonder what the purpose of your life was and what good will come of it. Part of me thinks that nothing good can come of your death. But you did live for a time and nothing bad can come of that.

9 months and counting

The further from Eva's death I get, the harder it seems to become reconciled to it. Yesterday was one of the worst days I've had. I feel as though I will slowly become engulfed by despair. I am struggling mightily with the two who remain, with work, with managing a family and a house and trying to earn my keep, but no matter. She's who I want.

Eva, what I wouldn't do to have you back. I finally sent myself a photo of you that I took on my phone. Your eyes are open and I am afraid I might lose the phone and thus lose forever the one picture of your open eyes that I think we have. I've never felt so close to the edge of breaking.

Goodbye, 2007. Don't let the door hit you on your way out.

A few of my regrets

1. I didn't wait until 37 weeks to deliver.
2. I didn't get to hold both my babies at the same time.
3. We were never all in the same room together.
4. I didn't bring you home alive.
5. I didn't hold you while you died.

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.

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.

Disappointments

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.

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.

train of thought

On your best day we got the call that doesn't honor bed time protocol.
I handed your twin to Teta, said you were not well, and left in my frayed pajamas.

I was between two train tracks, the ground started to rumble beneath me.
We drove to the hospital, that place of avalanches, running red lights and chanting
It can't end this way.

We ran to you, the place where you exited my body a horizontal burn radiating
Men compressing your chest and nurses calling out the numbers read on your blood
The tea leaves of your X-ray

Chaos as the rumble grew louder, trains coming in on either side of me
Your father paced outside of your room and I stared dumbly at the scene of your
death unfolding

I don't think we can get her back, your surgeon said.
in the moment that the trains passed me simultaneously
Pulling in opposite directions at the center, not holding.

Opening doors down the dark corridor

I feel as though I've become aware of dimensions of consciousness that were previously unknown to me. There's a darkness I've come to wear on my soul.

Mapping it Out

Every day, I spend hours thinking about Eva. Each day I awake with a single desire -- to fully map the terrain and boundaries of my grief. I just want to know where it begins ... and where it ends. So on a daily basis I run my fingers through it. I go over it and through it. I come up with daily metaphors to try to understand it. But I always come up with very little. Almost nothing.

I want to create something good out of loss. I would endure any ruin to have her back, but short of that, I am desperate to have something good in her name and memory.

call all good things Eva

A Cancer

I know now that Eva's death will be my slow metastasizing cancer. It will be my undoing. What started on April 4th and what will finally end when I do. That's what this pain feels like. That's what I fear I am becoming. I walk through every day deadened by this pain. I think thoughts that eventually lead me back to the chair I sat in while holding Eva's dead body. I marvel at the person who went through 29 days in a blind rush and panic from one child to the next, hoping to give each one his or her due. Eva will never fucking get her due. I should have been with her every moment she was alive. Would it have many any difference in the duration of her life? I wish I could just understand why she died.

I want to tear my eyes out, but mainly I want to carve holes into my left arm for Eva. For the side of my body she lived in. Should I have waited to deliver? Why did she arrest on the operating table? Did someone's negligence cause her death? If they'd given her anticoagulants on April 3rd, would she be alive today?

At so many moments her course could have changed. At so many moments she clung to life by a thread. So we shouldn't have been surprised when she died. But we were.

I'm disgusted with myself for writing this pity party like a goddamn teenager.

On Pain and Suffering

In the hospital, when I was in pain, a nurse would always ask me to quantify my pain on a scale of 1-to-10. I found that to be a very weird and confusing exercise. I had to call up all my experience with pain and what I could only imagine the extremes of physical pain might be, and then chart myself along that continuum somehow. Putting a number to it seemed to give the pain a definite value, but that value was meaningless in the face of my own subjectivity, inexperience and the complete inadequacy of the right side of my brain.

My friend sent me an email in which she claimed (in so many words) that what she's going through pales to my suffering. That statement, albeit well-meaning, is utterly futile. I can't a) know the boundaries of suffering in my own life, much less understand its possibilities in an empirical sense, b) quantify this payload of pain to any other in my own life, much less to any in the life of another human being. So how much pain am I in on a scale of 1-to-10? Go f**k yourself.

The interminable march of days ahead

When Eva first died, I thought I could handle the grief. The initial pain was searing, a great shock, but I felt that I could make room for the weight of my grief. It could find a space in which to settle in. But I had people around me then. They knew I was grieving and expected and nurtured my grief. It's been 3 months and 10 days. It's harder now in some ways. I feel as though my window to grieve is closing. The time to "move on" has come. I have nowhere to move on to without this beautiful baby of mine who will never grow.

July Update

The girl has made great progress in physical strength in the past few days. She's doing great with trunk strength, managing to hold her self at nearly a 90 degree angle. She's even started to roll over, from stomach to back. She really doesn't like tummy time I guess! I've come to realize, though, that we will likely face some challenges with her. I think she's going to be very attached to me and it won't be easy to start her in daycare, which we're currently looking to do at about 10 months (or January, if all pans out).

The boy also continues to amaze, but on the cognitive front. The other day, he told me he wanted to move because our garage is too messy.
Today at the park, a parent said he was taking his son to get I-C-E-C-R-E-A-M. The boy immediately responded, "Why is Willy going to get ice cream?" Our tools are quickly being diminished...

Therapy

I am starting to come around to the idea that this is a free form of therapy for me. And it is a way to make something of this experience and all the resulting pain. Sure, I could go to a support group but they meet during the precious short hours that we are all together as a family. I could try to see a therapist, but when? I have the girl all the time and cost is a factor. My luxury is staying home with her, since we're skimming savings every month to do it.

So this will have to do, a place where I can let it all hang out.

My sweet girl is sitting beside me as I type this, trying to sit up.

My Eva... well, she's in a malachite box on a shelf over my headboard.

I was thinking of the night of their birth, how my favorite nurse, G, asked one of the NICU nurses to take pictures of the babies so I could see them. The resulting polaroids were wholly unsatisfying, but the thought was wonderful.

I remember the NICU, the long corridor between where each of the girls were. It killed me that they couldn't even be next to each other. The NICU was such a cold place. My hands were so dry from all the washing that they burned when I used the anti-bacterial foam.

I remember the few times I got to hold Eva, how heavy she felt, how completely she sank into my arms. I knew she needed me.