Everyone has two memories. The one you can tell and the one that is stuck to the underside of that, the dark, tarry smear of what happened.

                                                 -- from Amy Bloom, "Away"

I've been chewing on this quote for months now, and I suppose it's time I do something with it.

The line comes from Amy Bloom's novel Away, wherein the protagonist loses her family in a Pogrom and flees to America.  And then finds out that her daughter, who she sent out of the homicidal rage to the chicken coop, may (may, maybe, could be?  Is it possible?  Is she crazy to believe?) be alive.  And the book proceeds to outline her physical and emotional journey to discover this truth.  It's a beautifully written book, and contains many sentences which were so hard-hitting in their gorgeousness, that I reread them multiple times.  And many, like this one, stuck with me.

It has come to my personal attention that, uh, (tries to remember what day it is; uses fingers to count) 17 months (!) after the fact, that I'm still "in the closet" to many people in my life (read: nearly the entirety of kids' parents in Bella's class, save for one who's shut like a clam due to that doctor/patient thing), and others (read neighbors) simply know the bare bones:  my baby died when she was less than a week old.  So I'm now, finally, hallelujah, to the point where I'm totally ok talking about it, and hell, kinda want to talk about it, and I'm faced with what to say.  So I got to thinking about the clean, tidy anesthetized version, scrubbed up twice with disinfectant and anti-bacterial, free of pet hair.   (OK, maybe not entirely free of pet hair, picks something off my keyboard and something else off my coffee mug.)  And the messy, nasty, gutwrenching, terrifying underbelly.  There is the story I tell in public, and not even that often,  which often simply gets condensed to, "I had a baby, she died when she was six days old."  Then there's the underside, the "smear," that gets told here and in therapy, the story my husband knows.  The story that gets replayed in my head, and in my nightmares.  The two memories, and why I withhold what I do, and why I tell what I do.

For starts, I don't even know where to insert this information into a conversation.  No fellow pre-school parent, for example, has ever asked me how many children I have.  Or if I plan on having more.  Or anything.  Which in no small measure, I'm grateful for.  But I'm now worried that when the opening comes, it will be like a bomb dropping and leaving a wasted plain.    There is, after all, the polite thang.  I'm assuming, having long-ago thrown out my Miss Manners handbook on neonatal loss, that it's probably not polite to discuss death of infants at all.  I think it scares people.  Hence my "in the closet"-ness, and not wearing my "My Baby Died" t-shirt when I pick Bella up.    Really, the whole story's a smear -- so why go there?

I'd love to tell you I'm as brash in real life as I am here, but I'm not.  Frankly, I don't give two farts about other people's scare-factor after what I've been through,  but apparently I do a bit. I don't go there, I don't even give them the nice memory.

Should I broach the subject, there's the why-part, which is really none of their business -- my genetics or infectious self. Inevitably when I tell someone, the next thing out of their mouth is, "Oh my god, what happened?" and I'm left wondering how to elaborate in a way that tells them something, but perhaps not too much, and does so quickly.  And I do this, knowing full well that they probably really don't give a shit, and THEY asked me to be polite, and they're praying I don't go into deatil.  "She was born with a host of irreparable, fatal problems."

But depending on whom I'm speaking with, part of me wants to start elaborating.  To let them know what a shock this was, and that I was not some head-in-the-sand, completely naive late 30-something mother, who smoked or did drugs or drank myself silly for nine months.  "I had a clean amnio, we went to term -- in fact, a week late."   Am I negating blame?  Letting them know how horrific the bombshell was?  Warning them that the universe can be horrifically unkind when you least expect it?

And I hesitate to get into the genetic discussion with most people, even though I know they're wondering (I can practically hear it) if we're going to have another baby.  I don't want to tell them the odds, because in the event I do become pregnant, I don't want them thinking I'm crazy, or knowing that we've used a gamete donor.  Strangely, some people I'd like to shield from this information are in my own family.  I don't want them knowing the odds, anticipating, worrying, getting emotionally invested; nor do I want them rejecting, replacing, or writing off.  But, honestly?  Sometimes I hear myself slipping into the odds, and the scary knowledge that there's "no way to know prenatally."  Am I telling them how pissed I am about my chances and choices?  Preparing them for failure in case there is another?  Trying to scare them too, informing them that ultrasounds are merely gross generalizations that occasionally can predict gender and obvious visible problems, but occasionally fail to discern numerous, mortal conditions?

The two memories.

I had a baby, she died when she was six days old.  She was born with a host of irreparable, fatal problems.  (I had a clean amnio, we went to term -- in fact, a week late.  I have up to a 1:4 chance of this happening again, with no way to know prenatally.)

And the underside of sobbing, anger, despair.  The memories of hospitals, tubes, needles, seizures.  The discussions about comfort levels, and removal from life support.  The knowledge of funeral homes, cremation, and explaining death of a sibling to a toddler.  The ongoing aftermath of grief and all of its gross, infectious ooze:  sleeplessness, bewilderment, weight I can't lose, short-term memory loss, jealousy, anger, loneliness.  All of it ugly.  Except for her, of course.  She was beautiful, and sadly, not meant for polite conversation.


************************

A couple months ago Mr. ABF came home from a social day of community service with the news that neighbors of ours are "splitting up."  It was news that took my breath away -- two people I adore, two people who've been together for what seems an eternity, two people who are part of the backbone of my very lovely comfortable community.  And the very next thought, after my heartbreak for them, was the heartbreak for us, how it would impact the neighborhood.  They would no longer host or attend functions; their house would sell; their dog, who my daughter insisted on dressing up like on Halloween, would no longer walk by my house.  And the NEXT thought was jeebus, this must be how everyone thought about us:  heartbreak for them, a cloud over the fun-loving community.

These are people who will now be where I am, with the big elephant in the room, no one knowing exactly what to say, including myself.  These people, when pressed, will assuredly also have their two memories -- the one they tell us ("It's nobody's fault"), and the one that careens inside of their heads.  They were so gracious when Maddy died, showing up in person at our door, with hugs and tears and an explanation that they really didn't know what to do, so they brought chocolate.  Which made all the sense in the world to me.  They were people who nudged me out of my shell to say thank you, and people who followed up with me, months after everyone else assumed I was ok, and asked how I was doing -- for real.  These are people with whom I shared the honest answer:  Awful, but functioning.  And so now I feel the need to reach out to them, to let them know I also have no idea what to say or what to bring to the table (Chocolate?  Vodka?) but that I'll be there, that I understand the elephant in the room, the uncomfortable realization that you're no longer who the neighborhood thought you were, that you, too, have two memories.  I'm not asking to be let in on the underside, I'm not even sure I want to hear it.  But I'm willing to bet they'll be grateful that I understand it exists.

Are you "out?"  To everyone or a select few?  And which -- or how much of your -- story do you tell? 

You can't write and cry at the same time.   I wrote that sentence, or something like it, back when I first started blogging.  I think it was part of a post trying to justify -- to myself and to the world at large -- my inability to see anything larger than my own anguish, the posts choked out of me like sobs.   

I say "or something like it," because I can't be sure exactly what it was that I wrote.  Though I try to be reasonably scrupulous about checking those things I can check, I can't bear to go back and read through my early posts.  Even imagining them triggers a shuddering claustrophia, terror of going back to that dark and narrow place.   

I feel a little of the same fear when I read blogs written by the newly bereaved.  I'm less wary of those who, like me, started blogging only after their losses as a way of channeling their grief.  On those blogs, the words tend to be weighed and filtered, the pain veneered with prose.

More difficult to read are the blogs by people who've been chronicling a pregnancy, when suddenly everything goes terribly, unexpectedly wrong.  I start those stories at the end, then go back to read the earlier posts, viciously ironic in retrospect: the heartrate at the first ultrasound, a link to the options for changing tables.  

I read those older posts like a novel, seaching for clues that might foreshadow the coming disaster.  But, of course, real life doesn't work that way.  We're always being blindsided.  We're always unprepared.  Life is a run of discontinuities and the gods have a weakness for the O.Henry ending.   

When I come to the end of the posts, I feel helpless.  I want to give something, but when I look down I usually find that my hands are empty.  My experience -- however similar to theirs -- is valuable mostly to me.  All I can do is watch and, once in a while, say something that I hope is, if not exactly right, at least not too blatently wrong.  Because if it's hard to write and cry simultaneously, to read and cry at the same time turns out to be no trouble at all.

Do you read lostbaby blogs?  Do you comment on them?  Are there specific things you try to say or not to say?

Ladies in Hades (Dell Books) back cover map for crime thriller, USA 1950, courtesy Steven Guarnaccia

We have tea parties on Beelzebub’s Roof and get skincare tips from Helen of Troy and whenever we’re feeling sorry for ourselves we get drunk with Cleopatra and play chicken, taking turns peering over the edge of the Bottomless Pit.

Then at 3 AM we stumble together through streets of fire to Anne Boelyn’s Waffle House for belgians with cinnamon sugar. It’s not what you would call fun but we are arm-in-arm anyway, shuffling in step.

I’m sorry you’re here too, but I’m glad for the company.

++++

The pamphlet was a piece of paper folded twice, a photocopy of a photocopy, crooked and smudged. On the front was a line drawing of a forlorn-looking woman with her head in her hands. She was wearing bellbottoms and a turtleneck sweater. The title read

BOOKLET OF NORMAL FEELINGS.

It was a fruit-punch-and-cheese NICU gathering for parents and I must have looked a mess, eyes glassy and red, bird's nest hair, on the brink. A social worker appraised me and as she reached for the melonballs with one hand she pushed the pamphlet across the table with the other, saying maybe you should read this, looking prim and satisfied, duty done.

Instead of taking the pamphlet I reached under her waistline for her pantyhose, pulled them up over her head and walked out.

Scratch that.

I obediently took the thing and looked it over with a frozen face as the parents around me yammered cheerfully about jaundice and reflux. Then I burst into tears, the snotty, gulping-for-air kind, bawling about cerebral palsy and retardation and brain damage and lifelong diapers as everyone else buried themselves in platefuls of two-bite muffins and styrofoam cups.

As I stumbled out into the hall she followed me and I thought cynically here we go, she’s going to try and help me but instead she called my name and said here, you forgot your bag, pressing it into my shaking arms. Then she turned and walked away.

Later that day the social worker in charge found me at the isolettes and said Kate, I think we should talk about what you might need, you know, to get through this and I said okay and she said I’ll be in touch but she never was, even after Liam died, other than giving me a $10 gas coupon once every two weeks. Which reduced the cost of twizzlers for my NICU commute by about half.

I understand they’re budget-strained. I understand that babies are the priority, not me. They provide beepers and tubes, the diagnostics, the chemical goo, the doctors highly trained in the art of saying we just have no way of knowing.

But I often wonder: if I were in charge, how would I initiate new and aching parents to this alien world? How would I help them feel like they had a place in it? How would I stand beside them as they made decisions about do-not-resuscitate orders and palliative care? What would I do to consider a babylost family ‘discharged’? We wouldn’t set them loose again into the rampant ordinariness, squinting and disheveled, without some sort of floatation device… right?

In a week or so I’ve got a phone interview with a researcher from the hospital who wants to know what they could be doing differently for bereaved parents. What would you tell her?

silent: said, or screamed, yelled, whispered, in the head. Not said aloud via the lips.

refrain: recurring word, phrase or sentence. perhaps a sound.

the silent refrain: a word, phrase or sentence that you keep saying, yelling, whispering, or screaming, in your head. a sound that keeps going on in your head.

::::::::

Twenty years ago: I was a good student. Trying hard to keep up with the grades. Polite and toed the line.

My silent refrains then:

"Blah, blah, blah... ... can't you adults say something else?"

"Why do grades matter so much?"

"I am scared to shit. What if I forget the answers?"

"I need to get out of this place."

"Nobody understands."

"Life sucks."

"I wish my boobs can be a bit bigger."

"How come they just don't get it?"

"I want OUT of this system."

:::::::::::::::::

In the last eleven months, my silent refrains have been:

"WHY?!"

"Did I really deserve that?"

"I cannot take this pain any longer."

"My baby died, you idiot." (Usually when asked at the stores "How are you today?")

"Don't you dare ask where my baby is."

"Don't you dare look at my big, floppy belly."

"You just don't understand, you are such an ASS."

"My baby died, you moron."

"Wipe that stupid smile off your face. You won't smile at me like that if you know my baby died."

"Just let me die."

"Stop smearing your happy shit over my face."

"My baby died. Can you shut up please?"

(when looking at my two girls): "Love them now... love them now... you don't have all the time in the world..."

Often, this comes up when I am standing in the shower, I dunno why:

"No, he did not die. Of course not. Are you crazy?"

Some are not as violent or rude as those listed a little above, but still cuts deep:

"Where are you, my son?"

"Please talk to me, Ferdinand."

"Can you tell me if you suffered? Did you feel pain?"

"Am I unworthy?"

"Do you know this pain is overflowing?"

"We are all thinking of you today, **** that you did not make it, ****."

"Will I ever get over this?"

"Where do I buy a ticket to the "other side"?"

And on very rare occasions:

"I know I can get through this. I will rise from the cold ashes. I can do it, damn!"

::::::

A lot of the times, just some gibberish yelling in my head, so I do not think hurtful thoughts, suicidal thoughts, or don't-get-me-nowhere thoughts. Sometimes I get more gentle thoughts in my head. Really, sometimes they are even beautiful. But those do not happen frequently.

What is frequent: hearing this sound in my head, which is my heart cracking and shattering, all over again. I also now understand what is a silent scream in the head.

:::::::

Your turn now, what's your silent refrain?

In addition to the box of ashes in my family room, and the unkempt dusty pile of cards tied with ribbon, a padded manila envelope containing a pink blanket, and other hospital detritus and paraphernalia, I have:

-- a lilac bush (gift)
-- a tree in a park (gift)
-- a bracelet
-- hopefully this year, a bench in a local, green setting

Of course I need none of this to remember that my daughter died, but sometimes I like the feeling of tending to something, or having something physical to look at.  Sometimes I just appreciate the bolt of remembrance at an odd time, like standing in line at the grocery store and finding myself studying my bracelet.  Other times I'm rather stunned that I've been watering the lilac for a week and not really thought about the back story, or driven by the park without a glance at the tree, or completely forgotten about the deeper purpose of the jewelery on my wrist and worn it like one would an old watch.

When I first began wearing my bracelet, I thought it was so big, so shiny that it would be impossible not to notice it every waking minute.  I can now go days without realizing I'm wearing it.  It's become a part of me, like the watch or the wedding band, that's just there.  The lilac is now a small bush, but I found myself this week paying far more attention to what kind of pansies I'm going to plant on the corner in front of it this fall.  I don't think it's forgetting, nor do I think it's accepting.  I think it's a matter of my life encircling these objects, and my grief becoming an everyday, commonplace downward glance.  

I tried to think of a simile for how I'm growing used to the strangeness of my grief and the momentoes that litter my life -- a missing limb?  An extra digit?  and the first thing that sprung to my mind was the calmness with which I moved through the baby flotsam of Bella's life, until I was nonplussed to discover a sippy in my purse, or an ABC magnet on my laundry machine.  I guess it's just like this.  What are now everyday objects occasionally pierce my consciousness to remind me of a daughter, and how the routines and symbols of my life have changed around them both.

Whadya you got?

In theory, I understand it.  It's a shield and a sword.  Protection from the knife-sharp comments or the knife-sharp silence and a blade you can turn against them.  It's the panther that walks with you, straining against its slender leash.  It's a Molotov cocktail.  It's a loaded gun.  

But, in theory, I understand a lot of things.  In practice, I wonder about the burden anger can be.

I don't generally get angry, even when, perhaps, I should.  Once upon a time, the man I couldn't imagine life without and the woman who knew all my secrets found each other and left me completely alone.   "You must be so angry at them,"  people would say. 

But I wasn't angry at all.  I was sad, terribly sad, so sad that I had to force myself to breathe, but I understood why they had done what they did and, more importantly, understood that, they hadn't really done anything to me. 

So it's hard for me to even imagine the rage that so often seems to swirl around the death of a child.  You could be angry at yourself, the doctors, your husband, your friends with healthy babies, the gods, the sunlight on the garden, the earth that spins in its monotonous circles as if nothing at all had happened.  But it all seems so meaningless, so futile, like being angry at a coin for coming up heads when you wanted it to be tails. 

You could be angry at other people's reactions.  People generally don't respond well to loss and say and do all the wrong things.  But, for the most part, they're not being malicious, just selfish and thoughtless.  And, while, sometimes, some people surprise you, expecting people not to be selfish and thoughtless is expecting far too much.

Sadness makes sense to me.  Anger -- at least anger at a loss --often, well, doesn't.  And, while I know there are emotions that transcend reason and that anger can be a force for healing, what I think about is the fable of the miller, who got rid of the mice that were stealing his flour by burning down the mill.

Your turn.  Tell me why I'm wrong.  Have you felt anger in the wake of a loss -- whether the loss of a child or some other loss?  What was it like?  Who or what were you angry with?  Was your anger an additional burden or a source of strength or comfort? 

I don't remember what I was wearing that day. I remember my long black winter coat because before I left I asked Monkey for a hug. But I don't remember what I was wearing under it, what I must've seen all day as I caught sight of myself-- my sleeves as I typed, my pants as I sat down, my belly as I balanced the laptop on my lap while I waited for Monkey at gymnastics that afternoon or as I waited for the kicks that never came that night. I remember the dinner I ate as I tried to coax those kicks, but I don't remember what the shirt was that covered the belly on which I balanced the plate. I remember that the radio was on as I drove to the hospital, and I remember that I thought the program was interesting, but I can no longer remember what it was about. Now that I know that the full moon was in fact supposed to be there, I can verify that the memory that started knocking on my brain's door recently, of the full disc as I drove, wasn't a figment of my imaginataion fabricated later on-- I really did see it. But I don't remember what I was wearing. Not as far as anyone else could see, at least.

I remember what I was wearing under my shirt. A bellybra, that wonderful contraption that distributes the weight of the belly over the whole back, making it much easier to function. Even if I didn't rememeber, this detail I could reconstruct, as I never went a day without it the last couple of months of A's pregnancy. But I do actually rememeber. I remember because the nurse asked me about it as she was preparing the probe to look for the heart beat. I gave her a glowing review, and she said she needs to remember it for next time because her back was killing her the last couple of months with her first-- what with being on her feet all day. I wonder, given what happened in the next 5 minutes, does she remember it now?

When I first discovered that I couldn't remember what I was wearing I thought of it as a good thing-- next time around, I reasoned, I wouldn't have bad associations with any of my maternity clothes, I could wear all of them again. Except for that bellybra, of course.

I am 28 weeks 4 days along today. If you come to my house, I doubt you can miss the belly. And yet, when I am out and about, I still wear a shawl. Unless it's over 90 degrees outside, and then I put on this net-like thing that goes over my head, is long, and a bit shiny, but is far less of a  disguise, though it still makes me feel a little covered, a little protected.  I waddle, by the way. Thanks to the pelvic pain that makes it hard to walk straight. So I waddle, and the belly sticks out farther then the boobs, and has for a couple of weeks now. And still I insist on having something that gives me some illusion of maybe fooling someone out there.

At first I thought that the shawls were my protection against the stupid that is out there, against the untouched who think a pregnant belly equals a live healthy baby 40-X  weeks from now. I didn't want to talk to them. I didn't want to deal with their "congratulations" and their "is this your first?"s. I didn't want to give them an opportunity to tell me all about their utterly normal life where assumptions of invincibility hold. A bit later I understood that I was also avoiding having to tell people that I am not jumpy and comfy because the baby before this one died. I didn't want to have to tell the story, anew.

It's a weird thing, really. I want people to know about A. How few people know that he existed used to be one of the biggest crazy-makers in my head. It's better now, the crazy is, but this particular thought is still sad to me. It seems, though, that I need to control the context in which I want people to learn. I don't know that it is even possible, but I seem to want to introduce him in some way that isn't all about pain. I want people to see that the pain is there because of how much we love him, how much we wanted him, how much we miss him now.

I remember, so very vividly, being pregnant with A, out and about with Monkey, and conscious of how lucky we were and of how much our luck can hurt to look at. I was thinking of infertiles at the time, but boy can a sight like this hurt a dead baby mama's heart.  I remember, too, last spring seeing pregnant bellies and babies wherever I turned my head. A veritable sea of happy that had no room for me. I started coping by making up sad stories for these happy people I saw on the street-- this one had five miscarriages before this baby, that one needed an IVF or three. I knew, even as I was making up these stories that they can't all be true. But that was what I needed to do to be able to navigate the world around me.

Recently some of the dead baby bloggers have been confessing to having a hard time with other people's pregnancies.  Is it any wonder? And what I realized, reading these bloggers, is that my shawls are a little about all of you too. If I can help it, if I can help it at all, I don't want to add to your hurt. I don't want to, as Bon so aptly put it, stab you with my roundness.

My sister is getting married this weekend. My parents arrived a few days ago and other family is about to descend on us in mere hours. To some degree, I have been measuring this pregnancy in intervals of and between significant events. For the last few weeks I have been terrified that this baby would die before the wedding, adding new layers of terrible to what would be horrific any day all on its own.  Before that I was similarly scared he would not make it through the week Monkey and JD spent in the Old City. 

That Monday, Memorial Day in fact, I wan't feeling as much movement as I had been used to. I tried the water, and the couch, I tried this, that, and the other. And finally I couldn't handle it anymore, and I went in to triage. A friend of mine is a high risk OB in my practice, although he didn't start there until last summer. When I first heard that he was joining the practice, I thought I didn't want him to ever have anything to do with my care-- I didn't want him to have to feel bad if shit hit the fan again. But as I pressed the intercom button outside of triage that Monday, I saw my friend walking down the corridor. And suddenly I very much wanted him to be there. I was alone and scared, and not until that moment did I know how much I wanted to at least not be alone.

It is good to be a friend of the attending, let me tell you.  He brought the shiny new ultrasound machine, not the old clunker that told the doctor all those months ago that A was dead. He was gentle, and kind, and attentive, and exactly what I needed. He didn't just do the one peak to make sure the heart was beating-- he sat there for ten or fifteen minutes carefully studying everything, watching my son wiggle behind my anterior placenta that with its movement-cushioning ways was the likely culprit behind that day's freakout. Twenty more minutes on the monitor and one fine-looking strip later I walked out of the triage room next door to the one in which they told me A was dead. I was light-headed, shaken a little.  But I managed to only be ten minutes late for dinner with a friend. And the next morning I took a deep breath and pulled that bellybra out of the drawer.

When A died, six months seemed like a ridiculously long way off, like it should be enough time to close the gaping wound, to let my heart scar over.  And now, nearly a year and five months out, what I am wondering is whether there is ever an end to the layers left to uncover. I suspect not so much.