glimpses

Today's post is the first from a new contributor to the Glow in the Woods family: Jen of There's a New Monarchy in Town.

Jen is a transplanted Canadian living in London, England, and a first-time mama in the first raw months of life without her daughter Sadie. She came on board as the 7th full-time medusa after writing to us to say 'thanks for being here', and 'I've completely lost my writing mojo' ...at which point we ambushed her to join our motley crew.

Please join us in giving Jen a glowing welcome--we're grateful to have her voice in our midst, and we hope you are, too.


I look back at photos from our four days in Vienna last month. Austria is damn nice, yes. And who knew it was so good at wine making? I loved the cathedral concert at dusk: Mozart and More. The end note of each song hanging in the air like it was up for grabs.

I like the tucked-away bar we stumble onto. The music is good here. The ceilings low, arched, stone. Peanut shells on the floor, wine savvy staff. We decide to sample the local stuff only.

Let’s have another.

.::.

We sit in a tiny room on tiny pastel sofas surrounded by four tiny white walls. Three, if you consider the one behind me is all windows. The view is the Thames and Big Ben. If you were in a restaurant you’d be pleased. Here, it’s nothing short of stifling. If you were me, across from the specialist who took care of her in those last hours, you’d want to scream back. He takes off his glasses to look at me squarely, Australian accent thick, and I wonder if he barely remembers. His words are clinical. I’ll bet the farm his own babies are alive and well.

“I don’t care if you believe it would have happened anyway. I would have taken however many more hours or days or weeks we’d have had with her if that nurse hadn’t moved her.”

It’s what I want to say.

Instead, I rock, shuddering through my sobs, conscious of the three sets of eyes fixed on me as I struggle to recover. I yank two, three more tissues from the box beside me angrily. I stay silent. I feel weak and my voice has forgotten how to work.

.::.

I am comfortable enough now that my confidence has grown as steadily as my indignation. I am here to work. Why are you looking at Facebook? Why are you complaining about someone else before you’ve even proven yourself? Why can’t someone give me the answer?

I smile. I put in 11 hour days on occasion. I think about the possibilities. I dream of what I was meant to be doing.

.::.

She would have been six months old on August 20th. I tried in vain to not imagine what she’d look like, what milestones she would have reached. I am okay, then I’m not, and then I am again. Okay being a different, different place these days. Grief, like an unwanted tagalong, saunters alongside me daily. She is vindictive in the way she chooses the most inopportune times to surface. I thought Sorrow was only a word used in love poems that include, ‘hither’ and ‘unrequited’.

Not so much.

If you have ever wanted to see what damaged goods look like, look no further.

.::.

We have been sitting in the garden for five hours or more, and the table is now a sea of glass, empty and full. I look from my brother to my friends and back to my husband. I laugh heartily and often, and realize in the back of my mind that this is where hope lies: among family and friends, new and old. I am grateful and then in the next breath I am homesick.

I am the luckiest unlucky girl.

.::.

While I took the four hour round trip to Luton and back to reclaim my passport, he went to our favourite place. Waited for me, had a beer in the pub that was once a jail. He is proud and a bit secretive of the contents of his shopping bag. I am always in awe at how much this process pleases him.

Later, he serves a stunning plate of monkfish wrapped in bacon. I fold my pajama’d legs under me and tuck in. Tastes like lobster. Baby squash, peppers, asparagus sauteed next to the sweetest new baby potatoes I’ve ever tasted. I wonder if there are two people in the room who have missed their calling. He raises his glass.

‘Cheers. To the future, whatever it may hold.'

.::.

Fleeting moments of "happiness" continue to catch me off guard. Do you remember the first time you laughed, or felt hope for the future, after your child's death? Did you feel guilty for allowing yourself to do so?


Thankful

It wasn't long after, maybe a month, that I picked up a book.  I was still swimming in the mire, crying uncontrollably, dehydrated, Dance Macabre filling my nightmares, heavy empty arms and leaky breasts consuming my days, all the while thinking:  I am at the bottom.  I am in the trash compactor of hell.  This is as bad as it gets.

And I began reading other stories of moms like me.

And found myself, surprisingly -- not often, but occasionally -- thinking:  wow, how horrible, I can't imagine, I'm so glad that didn't happen to me.

It's odd to be scraping the barrel and finding yourself giving thanks, but there I was reading about mothers who were denied the right to see or hold their children.  Women who were hustled along by the nurses who neglected to give those mothers what was rightfully theirs:  footprints, handprints, locks of hair.  Worse (to me), women drugged by doctors thinking they would appreciate sleeping through the process.  

If some maternal being, even a fellow babyloss mama, came to me, embraced me against her (lavender scented) bosom, clasped my hands in hers and pressed them to her heart, and earnestly implored me while looking tearfully into my eyes:

"Tell me what you're thankful for!"

I would probably scream, "Not a fucking thing," while cramming both our fists down her throat.  There is nothing here to be thankful for, not my child's sorry little life, and the unbearable year and half since.  Not the loss of my daughter's sibling, not watching my husband grieve.  Nothing.

Bite me.

And yet, late at night, while reading through your blogs and comments and words, I often catch my breath, mutter "Oh Shit," and think

It could have been so much worse.


I am thankful I married my husband -- I honestly can't imagine going through this with anyone less than or other than him.

I am thankful Maddy was born where she was, in this town where we had recently moved, and died in Children's -- which was recently rated one of the top Children's hospitals in the country.  They did not give me any answers, but they did not leave me with any doubt to her care, and their complete expenditure of resources and attention in trying to figure out what happened.  Her medical care was unparalleled.  Had Maddy been born in my local hospital, or in the hospital in my former state, we would be left with shrugged shoulders, and undoubtedly, "there's no way of knowing, nothing we can do."

I am thankful for Maddy's nurses.  They deserve capes and fancy wrist bands and theme music -- superheroes, all.

I am thankful my labor was quick, my recovery effortless.  I was on my feet immediately for a week of walking, crouching, sobbing, all away from home, my water bath and fancy salts and hemorrhoid cream.  And physically I was fine.

I am thankful I have pictures, even if they're not good quality.  The one with her clenched fist -- which is a sign of seizure, although I choose to forget that when I look at it -- is my favorite.  I choose to believe she's fighting.

I am thankful she died at Children's, where there was a bereavement department.  Someone spoke to us the day she died, and they kept calling.  They sent a specialist to talk to us about Bella, and had a lactation staff who dealt with ending it -- on a Sunday.  They sent us things we didn't know they had kept.  They still call.  They organize a yearly candlelight service.  She is not forgotten to them, and it makes it so much easier to drive by the hospital -- which I do on a weekly basis.

I am thankful for a small, but strong handful of friends who wrote me, emailed me, called and left messages for me -- when I didn't correspond back.  They didn't care, they didn't ask why, they just kept calling, writing, emailing.  They kept me from drowning.

I'm thankful Maddy's nervous system was determined to be mush.  She most likely felt nothing during her week here.  That relieves me more than you can imagine.

Most of all, I'm thankful I got to set the terms of Maddy's death, and that given what transpired that dreadful week, this one moment, at least, was in our control.  Of course I didn't really control it all, who am I kidding -- when a doctor says "she's being kept alive," basically the universe spirals out of control right from under your seat.  Sometimes I wonder if I could've done things differently, but ultimately she died in our arms.  Given all that happened that week, I don't want to contemplate her end happening in any other way.

Maddy dying is by far the worst thing that has ever happened to me.  And yet, I realize, it could've been so, so much worse.  And I'm oh so thankful that it wasn't.

In retrospect, comparatively speaking (or perhaps not at all), are you at all, remotely, even a teeny bit thankful for anything that happened surrounding the death of your baby/-ies?  And believe me, it's fine if you say "No.  Not a fucking thing.  Are you crazy?"

A wave of surrender

Today we feature a guest post by Dr. Joanne Cacciatore.  Her is a familiar name to many-  she is the founder and CEO of  the MISS Foundation and is  a foremost advocate for Stillbirth Policy. And as she writes on her blog, she is a mother of five children- "four who walk and one who soars." This post is a gift through her beloved Cheyenne that she gives to us. These are words that we need to hear, touch, and read. And perhaps ponder over, ruminate and whisper to ourselves. These words we need to hear, from a fellow bereaved, who have traveled further ahead of the road, and who beckon us with a warm glow of light.

Read More

writing and crying

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?

 

the silent refrain

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?

Layers

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.