Don't Tread on Me

There is a cute little girl who goes to my daughter's school. She is in the room next door to my daughter. They share the same [relatively uncommon] first name. Prior to starting at this school in September, my daughter and I had last "seen" this child when she was in utero. My then infant daughter and I had gone back to visit the staff at the Antenatal Testing Center where we had had between 35 and 40 ultrasounds -- just me and my girls getting to know each other in this unorthodox way.

This baby and her mother were there waiting for their ultrasound. I knew her mother, who was a neonatologist at that same hospital and we made brief and awkward small talk. This particular neonatologist is really the only one I clearly remember from our harried, desperate days in the NICU. I had met her before I delivered. She was the one who came to my room in the hospital where I spent 80 days to give me a consultation on the risks that 28-weekers face, even though I was already at 30. And she was the one who first uttered the phrase "myocardial thickening" in reference to my daughter, the one I had, until then, believed to be healthy. She was the one who, failing to notice that I hung from sanity's cliff side with only my fingertips, stepped on my hands -- carelessly, not meaning to hurt, but doing so nonetheless. She rattled through our life's circumstances like she was confirming a takeout order. She ticked off all our exotic ingredients like they were common condiments or ho-hum pizza toppings. Our heart defects were mundane, our rare flukes pedestrian.

Okay...Let's see ... that'll be two monochorionic monoamniotic twins, one with hypoplastic left heart syndrome, the other with myocardial thickening. Maybe a couple of VSDs on the side. Do you want to order open heart surgery with that? How about some breathing assistance? Yeah? Would you like that through CPAP or a ventilator?

Okay, I know ... That was really crass and self-indulgent and morbid. The point I am trying to make is that sometimes, just sometimes, your life, your very existence and that of your family feels reduced to a set of labels and discrete transactions. And when that happens, the sum of the parts does not equal the whole. Ironically, I think it was only Eva who managed to transcend the transactional orientation of our hospital experience. They pulled out all the stops for her and she died anyway. I can't help but wonder if anyone comes out without diminishment. This healing place, does it heal without scaring?

So... encountering the doctor brings me back to that desperation. When I see her now (which is a mercifully an infrequent occurrence), it feels as though I am still gripping a cliff side and she still doesn't see where she's walking.

Scary

Lately every time I see a new pharmaceutical commercial, I lose a moment's sleep or few minutes off my total lifespan. I also sprout some stress-induced acne, but I am quick to just pop those suckas. These ads are alternately hilarious; picture utopic vision with a just a wee smidgen of earthly comeuppance and terrifying (as in, people, the cure is worse than the disease!!). We're so unused to... how you say?... truth in advertising. These things seem not to go together too well.

Witness the Bro.oke Shields informational spot for La.tisse. That is some crazy, crazy. Because no matter how desperate I am for thicker, fuller, longer lashes, I am just not willing to suffer the travesty of redness, itching, weird hair growth wherever La.tisse comes into contact with my face or a permanent change in eye color. Cuz if you're going to head on up to your eyelid anyway, why not just go the extra step and apply the mascara if it is so stinking important? What am I missing here? It's not like the medication has a permanent impact, unless of course, you counting the increased brown pigmentation to your eyes. That is permanent. The eyelash growth, not so much.

So what's with the tirade, you wonder? A few years ago, as D and I were about to get married, I started to feel fatigued and I noticed my pee was the color of iced tea so I went to the doctor. Long story short, I was destroying my liver... with my acne medication. My liver enzymes suggested that I was close to liver failure, but hey, my skin never looked better.

Atonement

There was someone in high school with whom I had a close but unequal friendship. I was desperately insecure and she, well, she did not suffer this particular affliction. In one memorable, er.. memory, we went into one of those recording shops in the mall where you could get a tape (yesss, a tape, remember?) of yourself singing along with an instrumental version of a hideous song. She chose "Wind Beneath My Wings" because that, she said, was what I was for her.

Ehem.

So by the time we were seniors, with me enabling her the whole way, she was soaring above whatever I managed to feebly huff and puff below. Finally in the Spring of our senior year and on the heels of college acceptances (which I mention because I think it played a role), I started to come into my own ever so slightly. It's funny what a little acceptance letter from a school you really want to go to can do for the spirit. Suddenly I realized a certainly reality of our friendship and my role in it. And I didn't want it anymore. I didn't need it. I had the envelope. I was leaving and starting a new life in another state and [here's the rub] there was little consequence to my decision. So, I left her pretty unceremoniously. I came to the abrupt conclusion that I did not need that relationship anymore and that she would not change and I was done. I did not attempt to resolve or discuss. I actually remember feeling free.

It was not a shining moment of friendship or emotional maturity on my part. I went from being long-suffering to not being at all. I know that my sudden abandonment hurt her and I regret that. In fact, I know because she told me so at the wedding of a mutual friend a few years ago. It was such a dramatic moment for me that I am convinced I had a dream about it before it happened and I could scarcely sleep the night after. But even then, I didn't fully recognize my own shabby role. My response to her was a non-committal, "it goes both ways."

I hope that by now the universe has offset my bad behavior and that we're better friends to others than we were to each other.

Separation

I found this [profound, genius; sorry I can't avoid adjectives under the circumstances even though I know good writing need not lean on them] three line poem when I was in high school, before it could really mean anything to me, before I had lost or gained much of anything. I loved this poem then as a series of words that amounted to beauty. Now I love it as the brutal, plain truth. I came across one of the "prayer cards" from Eva's service, on which we'd printed this poem. I hate how those cards turned out. They are so plain, so artless. She deserved better and so did Merwin. But of course, nothing is enough of anything when it comes to her. And she is everything when it comes to me.

Separation

by W. S. Merwin

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.

Faith and Reciprocity

This blog has been my private refuge, my dark, safe space for a long time. Although I didn't give much thought to "audience" when I started it well before *everything* happened, I went private (and when I say private, I mean only I could read it) after the collision of fan and feces because, stupidly, I didn't want to burden anyone with my grief and I didn't want to feel obliged to hold anything back. But I have slowly come to realize that as I have come to regularly read other people's blogs (I'm down with OPB...), I have come to form attachments. I have cried and been comforted. I am opening this blog as an act of faith and reciprocity.

There. Done.

Pretense

In adolescence I always took notice of the appearance of other women and girls. Not consciously, mind you, but perhaps in the second or third row of consciousness I would size females up and categorize them -- fat/thin, pretty/not, etc. I don't think it was all about evaluating them independently, but rather trying to ascertain where I sat in the ever-changing ranked list in my head. I was always seemingly sizing myself up in comparison and I was always finding myself lacking.

Thank goodness I never have to be an adolescent again, cuz that kind of thinking is a travesty of self-respect and (at least as important) a highly inefficient use of finite brain power. Think of what I could have learned if I hadn't wasted so much time worrying about the size my butt compared with the next person's! Misspent youth, indeed.

[whisper] I do it now, though...

I size everyone up, but not according to their physical attributes (at least, not always). I am always calculating the level of pretense I must prop up on my shoulders. How okay does this person expect me to be? How deeply must I bury it? At times it feels (and I've used this metaphor before) like a piece of rotting meat that I have to carry and that I have to hide. The few people and places where the pretense of okayness is abated for a time enable me to just put it down. The relief is real. The change is palpable. Because hiding it is hard. It stinks, after all and so the schemes are often elaborate and the effect... odd and odoriferous. Come to think of it, that's me in a nutshell.

It's as exhausting as always believing that you are the fattest and ugliest (....and most broken....) person in a room and always checking to make sure.

Panic and the Sublime

Yesterday, for a brief period, D wasn't sure where the boy was. I was on the phone with him and he was distracted and lost track of the boy while they were at the doctor's office. He was fine, but for those few minutes, we were not.

I was abruptly brought back to that moment of weightlessness, when your child's life is out of your hands. It's a fork in the road. Your child can be returned to you or the very worst thing can happen. Those are basically the options. In the life BE (before Eva), I always knew that latter prospect was out there in the mist of possibility and yet my reaction in those moments was to basically believe in a good outcome. But yesterday, I remembered the last big fork and I couldn't ... despite the fact that surely most panics end well.

I was thinking about this fork-in-the-road idea last night as I was frosting D's birthday cake and later as I was falling asleep. Maybe for that reason, a merciful thing happened: I had a sublime, euphoric dream about Eva surviving. In the way of dreams, she just was discovered after being dead a few weeks. She might have even been under the bed, not sure. In any case, I picked her up, put her to my breast and, given the effort of raising herself from the dead, she was hungry and nursed beautifully on her first try. But because I had so much milk for her, I did overwhelm her a bit. She sputtered and I burped her. But after that, she was all smiles, beauty, pure light and unqualified joy. It was a gift and I overslept trying to get back to it, to her.

The Right-Born King of England

At the 37 second mark, you can see "Arthur, the right-born king of England."


A few months ago I wrote about the a stressful time we were having with the boy. In the Spring it looked as though he had ADHD and we struggled mightily with what the ramifications of that diagnosis would be for him. At the time he was in a Montessori program. At the time he was seeing a counselor. Well, he got kicked out of that school and we found a new therapist for him once it was clear that his former therapist was in favor of medication as an immediate recourse despite our feelings that meds were not yet called for given his age and our belief that underlying his behavior was some serious anxiety. At the very least, we felt grief and anxiety should be ruled out completely and other techniques applied before moving on to medication, which seemed extreme to us (even as our nerves were fraying from the stress of it all).

All through the Spring and Summer I wondered (okay fretted) what the Fall would bring for the boy. We enrolled him in our neighborhood public elementary school for Kindergarten. We shifted our schedules to accommodate his activities and to limit daycare. He would have Karate 3 times per week after school and would also be in our town's soccer league. The boy was excited about going to his "big school" ever since his first visit in May (incidentally that was just days after he was kicked out of his Montessori). And the boy loves playing soccer. And he seems to be getting a lot out of Karate, even if he is sometimes ambivalent about it. And his visits with his doctor, well yesterday he asked if he could start going twice a week (oy! my calendar and my wallet ache at the thought).

So yesterday, when the man went to the boy's parent-teacher conference at school, I had occasion to reflect on the past few months, on that diagnosis, on the pain and anger I still feel when I think about how his former school dealt with us. Because here it is -- our children are the best of what we have to offer (at least, I believe that my children are the best of what the man and I have to offer), so when the boy was jettisoned by his school after we did everything we could think to do to engage with the school and improve the situation, it hurt me deeply. Not only was my fragile hope dissolved, but my son's potential was dismissed. I'm still not over it all these months later. I think frequently about the boy's teacher looking me in the face and telling me that Eva's death was "in the past" and I shudder at the callousness and stupidity of such a statement. Babyloss brings some cruel garbage even from the well-meaning, but it sometimes it reveals that some people (and I'm going to try to show some restraint) are, in fact, not well-meaning. For me, particularly coming from a teacher, that was the worst thing. And while I'm on this particular nerve, why would a head of school tell a parent that a teacher came to him to complain about the parent's child? What possible purpose would that serve? Perhaps it was just context for the words that followed -- don't bring him back.

In contrast to the unresponsiveness of our private school, every call made to our public school was returned within 24 hours, before we were ever enrolled. And the boy's teacher? Hallelujah! We hit the jackpot. When the man told her about Eva, she said, "I'm so sorry" and "I'm glad you told me. Thank you for being so open." So, 6 months ago, the professionals around the boy wanted to medicate him. Now, those around him do not think he has ADHD (though clearly he is impulsive) and agree that 5 year-olds should not be medicated. For once, we listened to our shared gut. For once, it seems, we were ... right? Okay, at least we did not make a horrible mistake. We think...

8 Years of Married Bliss

And did you know that socks are a customary gift on that auspicious occasion?

Yeah, me neither.

Pressure Cooker

My mother's pressure cooker was the stuff of nightmares, one of her many seemingly medieval implements of torture (or cooking or haircare or yogurt-making for that matter). I don't know where or when she got it. I do know that it was red once, but that was long before its form was burned into the deep recesses where my childhood fears live still. Her admonitions never to touch it, never to pick up the ...???... "thingy" while it was on the pot left no room for doubt. If I disobeyed, I would blow our house to confetti (aside: that would have been a highlight of an otherwise cheer-challenged childhood). And had there been doubt, the shh, shh, shh, shh that accompanied the thingy's menacing swing would serve as further warning.

Shh, shh, shh, shh is the sound also of my longing escaping when I can no longer contain it in this body. When my knuckles are sore and my eyes are bleary from the effort of punching down my desire for Eva, sometimes I just have to say something. Today I asked D if he wonders what it would have been like. What a bore I am! What a tedious refrain that one is! He says, "it would be harder." Yes, it would be physically and financially harder, but emotionally... you'd never hear me shh, shh, shh, shh again. And maybe my red paint would stop peeling off.

Softness against the smell of plastic

(I wrote this last week)

Some days I can't imagine that I will have to live without you for another 35-50 years or more. 29 days is not nearly enough. I wish you were here still. Where is the miracle of your survival?

I tried to talk about you last night to your twin. I love you and I don't want you to be forgotten. Daddy said you're too young, your sister is too young to be saddled with my grief. Maybe I am trying to get her to carry it with me. I am permanently diminished by your absence. My soul had an accident, a horrible disfigurement. Small strokes, tiny seizures, imperceptible shadows of death... in the NICU, PICU. I didn't go to the burners, to the morgue. I will never touch your sweet skin again. Softness against the smell of blood and plastic.

2 years, 4 months, 9 days

I have recently come to learn of a community of "babyloss." It is both a blessing and a curse. I am reminded of Sartre's wisdom: Hell is other people. But I guess that I would add that hell is their presence and their absence. Hell is the isolation I feel in a crowd and the darkness I inhabit in broad daylight. Loss is a new language that most people don't speak and have no interest in. It is sand in the throat.

I am waiting for that moment of trancedence that somehow justifies or mitigates this impossible state of being. The pain is renewed so often by so many innocuous situations that I wonder how much longer this can continue before my despair smashes everything around me.

Recently my coworker's triplet grandsons were admitted to the hospital with a mysterious presumed virus. She related that her daughter saved one of the boys by recognizing he was unwell and taking him straight to the hospital. My friend, who is no stranger to stuggle, also managed to save her sick child by insisting that her babies co-bed and by never leaving her side. Although no one intended to suggest that my parenting was inadequate, I have not been able to shake the feeling of abject, fetid failure. And that's all I can say about that right now.

Close the window

Sometimes I read the tragedies of others and I feel as though I am a part of something. Sometimes their sorrow draws out my own and attacks me. The part of me interested in self-preservation begs to close the window. For the first time in a long time, I find myself desperate to leave.

Lately, two stories about mothers who saved their babies have revived my despair and guilt. I was such a shabby, useless person. Maybe if I wasn't she would have lived. Maybe there's is an evolutionary component to this whole thing. If I had been a stronger member of the species...things might have been different.

The thoughts that come unbidden

The funk is rising to meet me lately or maybe I'm descending again. In either case, I am utterly useless in a time requiring a high degree of utility. Maybe a refreshing mint would help? Or maybe I could do some violence to a skinny girl. I feel strong enough and angry enough to snap one over my knee. At the very least, I should break some crockery.

What now?

For the past few months we've had some ups and downs with the boy that have been more difficult than previous challenges. I used to say that the boy has always been a "willful" child. Now we're struggling with the possibility that it might be something more than that. The boy has been seeing a therapist since January. It was perhaps something we should have started a long time ago, but things came to a head for him at school and it became abundantly clear that we needed help. Initially, we thought that the help we needed related to the trauma of losing Eva and of the events and circumstances surrounding that pregnancy. So we sought a play therapist who has experience with trauma.

But after seeing the boy for a few months now and after doing 2 different sets of evaluations with him, including one with a school psychologist, it seems we're headed for an ADHD diagnosis. It's a bit of a shock, but we've been hearing the term suggested to us for a few weeks now. The surprise is that the boy's therapist went to school to observe the boy in the classroom. She called the man and told him that the boy's behavior at school was terrible. After several weeks of an upswing and not getting bad reports, we feel knocked down by this. We have had no indication from the school that his behavior had deteriorated, but then again, they are non-responsive, to put it politely. The boy's behavior at home is generally not bad, but lately we've seen the difficulties pick up there also. So it's not totally out of the blue that he's having more trouble at school but the severity is surprising. And the therapist said that the other kids avoid him. She seems to be suggesting that we get him medication, which we are loathe to do. She seems to imply that his self-esteem will suffer because he will be ostracized if he's left to continue without meds. But we don't want to deaden his creativity and ability. I don't know... I feel afraid. I feel as though we can handle home, but we're not always going to be at home. He will have to find a way to get along at school. somehow.

New Beginnings and Endings

First, the beginnings:
The boy has started bringing home readers from school and reading to us, which is a really wonderful thing to see. In so doing, he is taking another step toward independence. But he's not quite ready to fly the coop just yet. On Wednesday, I went to our monthly neighborhood ladies' event for the first time. We just moved January 30th. I wasn't invited in February. I couldn't make it in March, but this time I was sure to go. The boy bravely let me leave and told me that he wasn't too worried that I was going to Ms. S's house, as long as I came back, gave him a hug and kiss and woke him up to tell him I was home. The next day, he told me that when I leave, he worries that I will die. As hard as it is to hear that and to know all too well from where it stems, that he can articulate his anxieties is a new and wonderful thing.

Now, for the "endings":
The girl, who has had vague interest in and access to a potty for several months, has finally made a *product*ion of it. Until this week, she would see the potty, and occasionally she would sit, we would cheer, and she would stand to start the process over. Clearly, we had misplaced the emphasis.

Well, while we have a potty seat that she has easy access to because it is on the floor, we also have a portable seat that can be used over an adult potty. This one has the added appeal of being festively festooned with Sesame Street characters -- Elmo, "Big Birdy," Cookie Monster and Ernie, to be precise. We have tried to play it cool on the potty front, so this folding seat sits atop the tank in the kids' bathroom waiting for inspiration to strike. Well, it struck the other day! The girl requested the seat to be opened and we placed her on it. She tinkled! Not enough to darken the water at all, but we heard it! Honest! A day or two later, her confidence bolstered, she tried the floor model. She made a little noise. We cheered! She made a little more! We expressed our pride, our adulation, our glee at all that emerged (mostly it was gas, mind you) and we're very much hoping to make a habit of it. No pressure...

Certainty in a time of turmoil

I do research for a living. I like data. I like gathering, organizing, spreading it out and basking in, all to lull myself into a sense of greater certainty. I don't know that I have the conviction of my youth any longer, so beliefs and conclusions need something to be anchored to. The sea floor is data. We may not be touching it, but we can throw down the anchor when we need to.

And sometimes, when you're floating along, you need to. But then again, sometimes the data is too general and what happens to you, too specific. It's binary, not a probability.

Facing Facebook

It is a topic worthy of some contemplation and I've tried, but I can't seem to understand my aversion to Facebook. On the surface, I recognize that I feel defined by Eva's death and any interactions that don't enable me to deal with that reality head-on feel fraudulent to me. But somehow entering into my status bar "yeah, I am just sitting here... thinking about my dead baby" doesn't feel right. Nor does it feel right to pretend that that is not what I am doing. When I am...

Maybe on another layer, I don't feel successful and being "found" at this point in my life is disappointing to me. I don't know where I am. I don't really know what's next and I feel as though I have wasted so much time.

But I joined. I entered as little information about myself as possible. I just joined so that I could see pictures of B's new baby. Maybe I'll deactivate my account after that. Or maybe I'll face the fear. Hey, maybe I'll learn something along the way. After all, the MoMo site has been very good for me. Maybe another toe is ready to dip.

Sestina for Eva, Two Years On

I wrote this to mark 2 years without Eva. A sestina is hard to write and that felt appropriate.

Sestina for Eva, Two Years On

Two years have passed since you were born with your twin
On every day since I have cradled your heart
A garnet sliver inside your open chest sewn together in blue
Plastic which was your world – isolette, tubing, the smell. I mourn
For all that we came so close to having -- the memory?
A lump of sand I can’t choke down. Naomi, your other half

Thrives but too there is the howling hollow spaces your absence, your half
Leaves unwhole. At 18 weeks we first learned of our twins!
You lived only 21 more and how I wish I could have more memories
Of your beauty, more than just that night before open heart
Surgery (the first), before the car accident, before cardiac arrest that morning
Before your body swelled, called for mercy and released you to the blue

On the good days, relatively, I imagine that you are soaring in the blue
Sky, your bright eyes free of pain and plastic. The other half
Of the time, I think I would take you in any form and mourn
The lost chance to hold you with your brother and your twin
for even one moment as the family of five that is my heart’s
very beat if not the picture in my addled memory.

One part of me is pulled to you in memory
One part to hope, the pieces of my cracked soul in red and blue
The veins and arteries that are tentacles originating from my heart
boring through everything everywhere, splitting into halves
and dividing against themselves creating more twins
multiplying, amplifying all that we’ve celebrated and mourned

Only now can I finally see a morning
Bird soaring and I erect it on my shoulders into a tower in your memory.
In time we will tell Naomi that her twin
Flies so that she will never feel alone as long as the sky is blue
We spin and weave mythologies of you in trying to fill this cup to half
Fullness --for a start-- and grow the left ventricle of your heart

In another universe or dimension perhaps your heart
Is whole and beating. And in that place, I need not mourn
We are complete with both halves
That were never divided. There a book of memories
Is written about two girls with my curls and eyes a kind of blue
Touching as they were for 34 weeks, 6 days, inside one amnion, twins.

I will, to eternity, hold the memory of your heart,
Covered in the blue of an infinite sky in morning
You are half of my world, twin to the earth on which we continue.

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.