Eva,

It has been 21 months now, without you. When your tiny body finally quit, you broke my heart, my sweet and beautiful girl. Every day I claw at the injustice of life without you. But when you broke my heart, you opened it also, driving me relentlessly to want to be worthy of you. If I couldn't be your mother for more than 29 days, maybe I could keep you alive in other ways -- in my soul, for certain.

Moving wrong along?

The boy is going to be attending a Montessori program starting this fall. It is pretty costly and I can't help but wonder if we could have pulled this off if Eva had survived. Almost certainly, we could not. We're starting to look at houses a little closer to this school and to work, another prospect that would have been both dimmer and more necessary with our third child living.

While most of my brain recognizes that the boy is one of the children who did survive and thus deserves to be able to take advantage of opportunities that arise, there is a small part of my brain, dedicated to the proposition that all children are created equal, that is tortured just a little by the fact that we're making this lemonade. I feel disloyal to my girl. If I had the choice, I might choose differently. I don't have the choice.

Oh no! A budding fashionista?!?

The girls would have been 17 months old today. We're very proud.

To celebrate the occasion, the girl showed off her exploding vocabulary (which now includes yes, no, ball, duck, bye-bye -- all exclaimed with passion and emphasis -- if not the correct pronunciation) with a new word. As we were getting ready to leave this morning, I took the girl to the living room and she clearly anticipated my intentions because she pointed to her bin of footwear and exclaimed "Sthoo!" which could only mean one thing. Baby needs a new pair of ... [word of the day]

This I [Don’t] Believe: The disempowering nature of “bootstrap” cliché

(I wrote this and submitted it to This I Believe. It was not selected for broadcast and I am okay with that.)

Whenever life challenged me as a child and young person, I went to my closet of “go-to” aphorisms and wrapped myself tightly in one or more, depending on the situation, the depth of its chill. Through every setback or disappointment, I would bury my face in the softness of “it is for the best” or “everything happens for a reason” or the truly heroic, full body cashmere sweater of “that which doesn’t kill you, only makes you stronger.” Those cloaks stood me in good stead until now.

Then last year I watched one of my identical twin daughters die in the aftermath of 2 open-heart surgeries. It was the last and worst trauma in a very complicated pregnancy and a doozy of a short life. Over a year later, I keep trying to go to that closet but none of those platitudes fit anymore. They’re garish and abrasive in the light of the “new normal” as bereaved mothers call it. I can’t take comfort in “think of what you DO have” and won’t even touch “well, at least you still have one.”

But it is “that which doesn’t kill you, only makes you stronger” that I keep going back to, keep trying to use to cover the rawness of my new skin. I want it to be so. A little strength would come in very handy, in fact. I want a heroic happy ending wherein the devastated but persevering mother goes on to channel her agony into something that makes the world a better place. The problem is that I am not stronger, not yet anyway, and all I have to show the world thus far is this essay. So, for now at least, I am donating a closet full of easy-care clichés for something more minimal.

The new garments, the ones that seem to fit after shock and anguish have abated somewhat are not as thick and not as soft, nothing ever will be again. But though the chill still passes through, one can find a little warmth in “be as well as possible,” “I am thinking of you” and most importantly “I have not forgotten her.”

Long in the Tooth

I'm 34 today. Gettin' oooooooooold. But it's cool. I have the rest of my life to fight off aging, having retired my uterus for the duration.

I am and have been to varying degrees of success (and failure! I am the rare woman who's actually managed to GAIN weight since delivering the girls) trying to get back to my fighting weight. I am a long way off. I guess an unexpected consequence of having babies and losing baby is that I have almost no vanity left. Who cares about cute clothes and saggy deflated body parts under the circumstances. It's a little freeing, at least. I care to the extent that D has gotten into very good shape and I want to hold up my end of the bargain, but clearly the circumstances are a little different for me. Nevertheless, a good restrictive diet seems to be in order and will add the benefit of just a little bit of self-torture, which is called for!

Loss Begets Loss

Today is the original due date for the twins - one year later, of course. This date is probably not remembered by anyone but me, but it nevertheless looms in my consciousness as a symbol of normalcy, something -- one of the things -- that was lost in all this. The losses mount, the baby, the life itself and the avalanche of things, emotions, relationships, HOPE and POSSIBILITY that suffered unceremonious diminishment and demise along with Eva, who is in a way, eve.ry.thing.

Ironically, that realization (that loss begets loss) is something I've gained, something that has emerged from the vacuum. And it is this understanding that is enabling me (among other things) to make a little modest progress. Credit must given to the wise mothers I've started to meet in the virtual vacuum, which it must be said, is something I had not placed my value in. It is only hard-won humility and utter desperation that brought me to open myself up to others in this way. But in the absence of any other alternatives, I spent the time to find others still coping. I have been impressed and moved by the grace and thoughtfulness I've found on the CLIMB message board, eLimbo. How about that?

Lessons Seeped In

A year now and most of the time my brain has been a bowl of pudding. But I think I have learned a couple of small things


1. A sure way to lose friends and alienate people is to mention your dead baby. Grief is inconvenient and unwieldy and you should really try to keep the cover on it. It's not that they don't care. They do, but they want you to get the whole thing over with so everyone can go back to the way things used to be. And didn't they show up for your service? Didn't they graciously accept your misery before you even understood enough about the situation to be miserable? Whose fault is it that you were so in shock for the first months that loss had not yet come to define you, settle into your very bones until long after all the friends and neighbors had packed up and left?

2. Loss is a menacing trickster. One day you may feel the weight lifting ever so slightly, but just as suddenly (and surprisingly) as that feeling appeared, the tractor of trailer of sorrow will hunt you down and level you at full speed.

3. Time is linear but grief is not. Time may heal most wounds but the death of a child is surprisingly immune to this form of treatment.

4. Right after Eva's death, a nurse told me that men and women grieve differently. At the time I thought, "she doesn't know us." Apparently, she does.

5. I thought I cared about my child's "quality of life." I don't. I care about her life period and know that I am no judge of its quality or lack thereof.

6. No matter what choices I made, I would have regrets. Regret is one way of pretending I had some real control or say in what happened. If I could go back and undo or redo, I would only replace my current list of regrets with new ones. This is seemingly the natural course of motherhood.

At this moment

The surest way to repel people it seems is to tell them that I lost my child and that I'm hurting. Close friends, long-lost acquaintances, my mother -- I am honestly surprised by the roaring silence around me.

Almost a year on, I can almost smell the plastic tubing and the blood. I can feel your warm soft skin, your wisps of hair. There has been nothing worse for me than this feeling. It used to be that I cared about quality of life. Now I only care about life. I would take you in any form. Not that I want you to suffer, but I want you here and I am no closer to peace and understanding, no closer to resolution.

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.