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.

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art of healing

everybody's doing it.

it's in, it's fun, it's great for teaching social media or sizing up a site. but until i saw Mad's stark and poignant Wordle a couple of weeks ago on the topic her February miscarriage, i hadn't considered that the novelty site might also serve as a tool for art therapy of a sort; that it could offer a mirror reflecting one's own words and sorrow and thought processes back to oneself, reconfigured.

the healing process doesn't really end, i don't think.  the pain becomes less immediate.  the desire to connect to it fades.  but, for me, with peace has come a curiosity about meaning, an urge to explore - from outside the raw wound that is personal narrative - what it means to live through loss and come through the looking glass.

so i entered text from my own posts here into Wordle, and stepped back, imagining myself perched on a bench in a wide, minimalist gallery, taking in the conglomeration of words and connections as if they'd sprung from some elsewhere, as if the blood they spoke of was foreign to me. there is healing in distance, my grandmother always told me. there is insight, i thought, maybe, to be found in this bird's eye view that brings my words back to me jumbled and reorganized, full of acrostic mystery.  

i cast my tea leaves and hit "create," and time, and think, and baby and grief and wanted all leapt from the page, not entirely unexpected but still surprising in their relative size and relational combinations.  in Wordle, the frequency of words in the base text impacts what size those words show up as in the created piece.   time made me nod.  think made me laugh.  i overthink everything, always have, but didn't realize the theme had come through so dramatically in writing.   the left-hand side conjunction of still, think and back juxtaposed with the alternate combination of still, go and back - with go slightly smaller, like a longing finally discarded - made me wistful...for the longest time, in my sorrow, i wished myself back to the time when my son was alive.  in moving beyond that place of wishing, i have left something behind forever.  but both realities - the one in which i think back and the one in which i would go back if i could - are present in the Wordle, roads diverged only by one word.  elsewhere, tiny wanted baby and peace wrong and healed though never exactly enough and the way lost fits inside time all catch my eye, my breath.  these are things never quite articulated aloud, yet there they are, alive on the screen.  seeing them is like looking through an old photo album, a former life flooding back in the recognition.

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what do you see?  have you tried one of these for yourself?  is this art for you, or just a novelty gag?   what place has art - of any kind, writing included - had in your own grieving and healing process?

 

angry

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? 

journey's end

My father and stepmother were in town, so they took me out to dinner at a restaurant a good deal more upscale than the ones I usually frequent.  The menu, printed in copperplate gothic bold, featured a smörgåsbord of resolutely non-kosher choices -- Curried Tasmanian Crabcakes, Ginger-Wrapped Skate, Pork Loin Dulce de Leche.  I asked the waiter what the soup of the day was, but he said he couldn't tell me because "The chef personally creates it based on what he finds freshest at the market that morning." 

We reviewed my nephews' soccer season, wondered why my sister never seems to be able to find a job or a boyfriend, critiqued the recent Supreme Court decisions on money laundering, and lamented the housing market in London.  

At the end of the evening, as we were saying goodbye, my stepmother reached out to hug me and said, "We were so worried about you, Niobe.  We didn't even know what to say."

"I'm fine,"  I said.  And I meant it.

After the twins died, I read a lot of articles about bereavement and mourning.  They said that the journey of grief goes on for a lifetime.  They said that you never truly get over the death of a child.  They said that the child who died will always have a special place in your heart. 

They didn't say what to do when you come, unexpectedly, to the journey's end; when your fingers fumble, searching for that familiar hole in your heart, only to find it's no longer there.

From the Gut

I read Deborah Davis’ Empty Cradle, Broken Heart: Surviving the Death of Your Baby about 4-6 weeks after Maddy died.  I found it . . . redundant.  I guess it was nice knowing I didn’t exist in a void, but confirming that I’d be feeling . . . exactly what I was feeling?  Thanks?  I guess?

But there was a gem in there that helped me significantly, and rolls around in my head to this day.  I’m sorry I can’t quote it verbatim because I sent off my book to another grieving mom, but it went something like this:  it’s actually a good thing that the major decisions we make during the time from hell are made while we’re sleep deprived and loopy and trying to juggle a million different balls and exhausted from crying because that way, they come from the gut.  Davis suggests that it’s a good thing we don’t over-think the major decisions, and that instead, because of our circumstances, they come from somewhere subconscious rather than based on intellectual reasoning.

If I remember correctly, Davis used this statement in the context of removing life support from a child.  But I really think this sentiment applies to a lot of decisions we made under duress, no matter the specific details around your baby’s death.

We did in fact make the decision to remove Maddy from life support.  But it wasn’t even a decision, really, certainly not one that keeps me up at night.  She didn’t have a nervous system to speak of, her heart was only beating thanks to machines, and she was fed through tubes.  At six days, she was given a prognosis of 48 hours -- on the machines.  And after seeing her almost crash (on the machines), twice, surrounded by strangers, we decided that if nothing else, we wanted her to go peacefully and in our arms.  The decision here was really what kind of death we wanted for her, not whether to grant it for her or not.  And I’m more than positive we made the right choice given our grim options.

But we made some other decisions that week:  we moved her to Children’s Hospital from Delivery hospital, where we were told that they might be able to offer us more in terms of a diagnosis.  This was by no means a life-saving measure, and our only hold-up on this particular decision was whether Children’s would honor our wishes and not take life-saving measures when we didn’t want them.  We were a bit leery of the bright and shiny technology, but they were more than sympathetic and accommodating.  We decided other things too:  to have the nurses take pictures.  Not to have Bella see her.  (It was a bit complicated anyway, since Bella wasn’t feeling well to begin with.  But we didn’t force the issue.)  To name her our first choice of girl’s names even though at that point we finally named her on day two we knew she would die.  To take footprints.  To swaddle her for her death instead of dress her.  To have her cremated.    We didn’t have a service.

I think an outsider might look at these “decisions” and analyze, but wait – if you were that mentally exhausted, don’t you think the doctors and nurses and family were somehow guiding you?  Leading you on?  Making your decisions for you?  Putting words in your mouth?  Last year in group therapy I met a woman who told of a scene when her extremely ill two-year old (he lived to a week shy of his third birthday) crashed at the hospital, with her in the room.  The lights flashed, the bag went on, CPR administered, and the line kept steadily flat.  For a good few minutes.  Her son had been sick since a month after his birth, his prognosis was grim.  The doctor looked at her with his arms in the air and the knowing look, the look that says, “I think this is (finally) it.”  And she said, without hesitating, “Keep trying.  It’s not time.”  And they worked, and a few minutes later, the line started bouncing, and her son zoomed back.  And she bought a few more months with him.

For some reason this story comforted me greatly.  She went with her gut, and she was right.  And when I told her my story of my decision to remove Maddy from life support, she said I was her hero – that she couldn’t imagine being faced with that option and having to make a decision.  But you did, I said, you did.  You did in the face of doctors telling you it probably wasn’t the right one.  We both did.  From our hearts, our guts, and we don’t question them.  We were both right.

I’m not entirely comfortable with all of my decisions, especially not having a memorial service.  I just couldn’t.  I couldn’t for the life of me think of anything to do that seemed remotely appropriate, anything to say.  I was so angry and tired and heartbroken it just sounded like salt in a wound and following a script that I didn’t want to be a part of.  It didn’t sound like “closure,” and it didn’t seem like nearly enough for what this poor little girl went through.  And sometimes I regret that we did nothing – that I should have done something to remember, no matter how painful.  Sometimes I wonder if it would’ve made any difference in how some of our family behaves if they had been forced to acknowledge in a public forum that she was here and living and now she was dead and gone.

But, know what?  I really think I made that decision for a reason.  It was my gut talking.  It’s what flew out of my mouth when I was asked, and what I felt in my disoriented, barely vertical state.  And I think my mind was trying to tell me something about my limitations, and what I could handle at the time, and ultimately what was right for me.  For all of us.

I’ve seen women here and elsewhere struggling with the weight of their decisions already made:  to terminate pregnancies in the face of mind-blowing devastation for their babies, or themselves.   To name their dead children, or not.  Whether they held their children long enough, or didn’t hold them at all.  Whether they agreed to autopsies.  Whether they had services.  Whether they should’ve cremated/buried, or vice versa.  And as I told the commenter, I think given the extraordinarily shitty circumstances and the mental capacity we have at those moments, these decisions are made from our guts for a reason.  I don’t like to acknowledge the tiny voices from within because it sounds like I subscribe to teh Crazy, but let’s face it, there are voices that protect and warn:  don’t touch that, it’s hot.  Don’t go that way.  Change lanes, now.  And sometimes, as a parent, that’s the only way to make the tough decisions:  to listen to the tiny voices emitted from the heart, not the mind.  

I recognize fully that some of us were not given decisions to make; that medical personnel or family intruded and made them for us.  And I find that deplorable, and I’m so sorry if that happened to you.  That’s certainly a subject for another post.  But for those of you were given choices, which really weren’t – choices where A was heartbreaking and B was downright shitty – it’s probably best that they were made in the heat of the moment, while you may have been in a hazy drug-induced coma, or on your umpteenth night of no sleep, or after crying your brains out for 12 hours straight.  And now we simply have to breathe through them and recognize that our subconscious was probably trying to tell us something.

Easier said than done, I know.  Easier said than done.

once and again

I think I was probably well into my adolescence before I understood that the word "pregnant" could actually be spoken above a stage whisper.

When I was eighteen and groping my way blindly through the minefield of college sexuality, "pregnant" was one of the scariest words in my vocabulary.  When I was twenty-four and at my first real baby shower, traumatized by the balloons and the sorority-style squealing and those bizarre paper hats, "pregnant" felt like a word from some foreign language I couldn't fathom being fluent in.  When I was twenty-nine and in the midst of a divorce and a PCOS diagnosis, "pregnant" began to feel like a heartbreaking word, one that might slip through my fingers forever.  When I was thirty-two and the pee stick turned shockingly positive for the first time, "pregnant" became a magical incantation that I whispered to myself, secretly, almost in disbelief that such wonder had ever come to pass.

It was the next spring, at thirty-three and deep in the bone-numb grief of mourning my firstborn, that I lived all those incarnations of the word - the shameful and horrifying and foreign and heart-searing and secretly longed-for - all together, each time I encountered a ripe belly.  They echoed all the long weeks up to my due date: that could/would/should have been me. Bellies seemed to sprout up everywhere, the world a sudden minefield of them.  And each one, beautiful and poignant, full of possibility, made me gasp for breath and sent my shoulders hurtling up over my ears and my eyes skittering to the street.   To a babylost mother, there's little so evocative, so exposing and so wrenching as a healthily glowing pregnant woman, the Other, our opposite, blithely traipsing down a path that has dumped us remorselessly overboard and marked us Not Wanted On the Voyage.

Which makes the whole conversation about pregnancy after loss a little awkward, and being pregnant, in the company of fellow Medusas, a little like being the elephant in the proverbial room.

I am twenty weeks pregnant today...a round, portentious number in a body becoming more round and portent by the day.  I am on bedrest, that strange half-life, existing and interacting mostly online.   I am disembodied, in a sense, and perversely grateful for the cloak of this purdah, this enforced hiding from the world.  Because in being pregnant, I already embody enough of my own nightmares that I'd just as soon not trigger anyone else's while they're innocently out for groceries. And yet here, in this good company, I know my words have just the same power to wound as my silhouette would if you ran across me in the checkout...that in owning the elephant, I risk sending someone's eyes darting away from the screen, hot with tears; I tread on scars and the plaintive sorrow of why not me?

I don't want to, but I do, just in being here.  I know that, and I am sorry.

I know I am profoundly lucky that pregnancy after has come easily, or at least conception has.  I had my second son, then a nine-week miscarriage, then a positive pregnancy test that's brought us safe thus far to this midwayish point, all tenterhooks and cervical stitch and quivering, half-naked hope I can still barely look in the eye.  But it is in the hope where the luck resides: hope spins futures, however cobwebby.  And it is futures, dreamed and cast to ruin, that haunt those who mourn.

In the early weeks after Finn died, when I was still waking shocked to find my body empty and no longer pregnant, I wanted desperately to turn back the clock.  I felt wrong, robbed.  I wanted to be pregnant, to rectify this hole that had somehow ripped its way through the space-time continuum.  As acceptance began to beat its way into me, and I flailed like a fish on a line trying not to confront the weight of my grief head-on, I wanted again to be pregnant...to force the hand of fate and try to peek, somehow, into a future I could no longer imagine.  But these were not the clinchers, not the reasons that led me to throw caution and the pill back to the wind.  It was more a compulsion than a decision, ultimately...an inarticulate, animal pull, like a cat in heat.  I felt reckless.  I wanted to breed, to be fecund, to ripen, to throw myself at pregnancy with all the fierceness I could muster.  I wanted to make babies, hundreds of babies.  I wanted it like I have wanted nothing else in my life, like it was the brass ring, the hope that would bring back hope.

And yet when I locked myself in my bathroom to take that home pregnancy test, five months after the death of my baby, I didn't feel hope.  I felt ridiculous, exposed, foolish.  I imagined cackling harpies crowding at the door, taunting me: look at the crazy lady whose baby died, conjuring up pregnancy symptoms!  pitiful!  nutjob!  bwaa haa haa haa!  Even when the test turned positive, they didn't have the decency to disappear, those harpies...they just altered their tune a bit, drowning out any hope I summoned, reminding me that I had no reason to expect that all would go well.

I did not trust my body.  I did not trust my instincts.  I once again had something precious to lose, to fear losing, and oh, how I feared with all my heart.  I became fixated on dates, on counting, on parsing out days until the heartbeat, the ultrasound, the window for x to go wrong, the next ultrasound, viability, the gestational age at which Finn died.  

I still do it.  For a brief window last fall, I had the most uncomplicated few weeks of pregnancy I've ever known.  Even with Finn, I'd begun bleeding a few days after I found out I was pregnant, and had thought for a week or more that I was miscarrying.  With my second son, I bled from the day of the positive test, harpies bleating, and died a little each time I peed for the entire seven months after.  So when my pregnancy last fall hit the six, seven, eight weeks with no sign of blood, I began to strut a little, inside, began to race ahead of myself with hopes and fantasies...began to think, this is what it feels like to be normal.  I felt the strange conviction that all would go well.  Ah, hubris.  The nine-week ultrasound showed that the fetus had never made it past six weeks.

So this time too, again, I leapt in still bruised, still with healing yet to do.   I leapt in acutely aware that what I want and what I think mean squat, in terms of outcomes of this pregnancy, understanding that if we were lucky enough to get out of the first trimester there would be bedrest, possible medical complications, all these things that scare the living shit out of me.  I still forgot that for days before every ultrasound I would manage to convince myself, subconsciously, that the baby had died...and thus leave with good news but feeling worse, as if the inevitable torture had merely been postponed.  I still forgot that the societal discourse surrounding pregnancy - all bloom and celebration and oooh, fight stretch marks! and let's have a shower at twenty weeks! and if something were wrong, mama would know - would make me feel like drinking rat poison...or like feeding it to the oblivious smiling hordes, so certain in their entitlement, their claim to a "rewarding" pregnancy.  I still forgot that I would choke on the words, "I'm pregnant," just as if I were an adolescent or a frightened eighteen year old...that I would feel sheer terror at the prospect of having to expose that much of my secret soul - my fragile hope - to people even long after my body was negating the need for an announcement. 

What I did not forget is that it is a gift, this one more try.

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What is your relationship to pregnancy after?   Is it a possibility?  Something longed for?  Feared?  If you've had multiple losses, did you find your relationship to the subsequent pregnancies different?  Did you choose an alternative path to having further children? 

If you have been pregnant after loss, what was the experience like for you?

And lastly...is this a topic you're comfortable encountering here, and if so, under what circumstances and terms?