Guilt

Grief is a tidy little word on the face of it -- it seems to suggest that we're just humming along, mourning our lost children.

Easy peasy.

But we all know too well that grief is a non-native, invasive species, wrapping itself around other parts of our life and suffocating them. It's a balloon that inflates, until it encompasses so much more than death itself. I often feel like I grieve multiple things: my old body, my old self, optimism, little-f faith, confidence in medical testing, unbridled joy, the unpleasant pruning of family and friends in this debacle, the family of four I envisioned. Oh, and my daughter. What I really want, I suppose, is the freedom to just miss my daughter.

Then there's the extraneous stuff that complicates grief. Multiplies and magnifies it. Doubt. Confusion. Uncertainty. Could be religion or parenting, could be infertility or relationships.

Could be guilt.

The first thing -- the absolute first thing -- I said to my husband after The Conversation with The Specialists where they told us Maddy was dying, and how did we want this to happen, and left the room so we could have a moment together was:  I'm Sorry.  

I'm not exactly sure what I was apologizing for -- marrying me? meeting me? falling in love with me? -- because when you get down to it, I had nothing to do with Maddy's death. Regardless of who's right in this mess and whether Maddy died of some never-before-seen genetic disorder or an infection circa 25w gone madly awry and then correcting itself, I float above rather free of blame. I had an extremely monitored pregnancy, and the umpteen ultrasounds through 32 weeks which never detected a problem. I never had a worrisome symptom. I never had contractions or leaking that needed medical attention. I had amnio because I was maternally geriatric and it was normal. I didn't miss signs, I didn't skimp on care. There was no date where I could have stepped in and said, "Something is wrong," and something could be done where everything would've turned out alright.

There is only the beginning. For me, what residual guilt I have over Maddy -- her awful little life and her death -- lies at the very onset of her conception when I said, "Let's try for a second." That's the only point I could've stopped the train from going off the rails, by not letting the train leave the station at all. But like someone who was broadsided by a car that missed a stop-sign, that's rather like saying, "I'm sorry I went to buy groceries." "I'm sorry I decided to go to work today like I always do." "I'm sorry I went to pick up our kid at school."

And so for the most part, I've let it go, and I swim this complicated sea of grief rather guilt free. I realize in that respect I'm sort of an anomaly in these parts, and that many of you feel guilt surrounding your baby's (babies') death(s) like a shoe on your throat. Missed signs. Care that at the time seemed plenty attentive but in hindsight seems sketchy. That 20-20 vision where you now know exactly when things started going poorly, and maybe if you had known, and could've gone somewhere, and convinced someone, and done something . . . .The feeling that if, if only, what if.

And I often read these posts and want desperately to step in and turn guilt off like a faucet.  It's moot! I scream at my screen. It's happened. And it's only complicating things. Let it go. It's not your fault.

But there's nothing I can say, because I know it's not for me to say it. It's for you to unravel and marvel and wonder as you stare at the pieces in your hands, wondering how you could've missed how they all fit together. It's for me to abide with you, and listen, and comfort, and take pain in your constant turning back of the clock. If there's anything I could do for a fellow parent grieving, it would be first and foremost, to erase the guilt. To separate it from your problems, set it on fire, and watch the smoke drift away. To eliminate that one feeling that makes grieving so, so much worse.

Do you feel guilt regarding your baby(-ies) death(s)? How do you deal with it? What if anything makes you feel better about it, and can you envision a time in your future where you let it go?

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?