Stirring the pot and singing Kumbaya

Last year, while I was still in the very thick of it, Virginia Tech happened. I didn't watch much TV then at all, and certainly not much in the way of news. I heard of it on the radio, I think. What I did do a lot was read blogs and chat online, mostly with my friend Aite. One day she told me she was watching the coverage of the tragedy, and there was this interview with a father of a student who got killed. One question he was asked was "was he your only child?"

Would it have been any better if he wasn't? Not really. But it would be worse if he was. Facing a life with no surviving children is a separate pain. She is very thoughtful, my friend Aite, isn't she? This is something that stuck with me over the last year, this idea of how some things can't possibly be better, but there are ways in which they can be even worse.

I have been troubled the last few days. Perturbed, bent out of shape, preoccupied.  A comment, a couple of lines and a signature, is what left me alternatively dumbfounded and steaming. A comment that seemed to imply that we here have not so much to talk about because we are, none of us, bereft of living children and at the end of that road.

I never claimed or wanted the mantle of the worst case. In fact, somewhat recently, I finally, after thinking about it for a long time, wrote about one of my coping mechanisms-- the it could've been worse. There are so many ways in which my experience with grief could've been a lot worse. For starters, every time I hear a bereaved parent talk about the guilt they carry, my heart breaks. I have none of it. And this still sucks. Adding guilt on top of the grief seems like it would just be too much. I also had the very best, most compassionate medical care. I have friends who didn't run away, who still remember and take care not to step on my toes. And I have a living daughter. Validating her in her grief, acknowledging that she is a separate part of this story, that her loss is her own and must be respected and honored, all of this has been a challenge. But not one I would ever trade.

Yes, it could've been worse. It is worse for many, I believe. For parents losing their first-borns, how can it not be worse-- wondering whether there will ever be a living child in their home, many times a home lovingly picked in preparation for the arrival of that first-born? For parents who years after losing their child and despite trying and trying, and trying some more have not brought another into the world, how can it not be worse? For parents for whom lightening has struck two or more times, how could it not be worse for them?

So see, I have no problem with anyone telling me I am not the worst off. In fact, I'd be the first to say that. What I do have a problem with, a big huge problem, is with conflating me, an individual who grieves, and my son, an individual I grieve. Or any other baby anyone else grieves. I don't think the value of a child, value of each child to the universe and to their family, can or should be relative to what the family does or doesn't have.

We all grieve our children. We may grieve different things about them. For some it may be as simple and all encompassing as the huge void, the absence, and for them there is no need or use in dividing that void into bite size pieces. Others have come to believe that we grieve the potential. We grieve not knowing. Not knowing so many things. It kills me that I don't know what color A's eyes would've been. What he would've looked like when he smiled. What his laugh would've sounded like.

What has been so upsetting to me in thinking about that comment is the implication that these things I grieve should somehow be less important because he wasn't my first or my only. That not getting to know my son is less of a tragedy because I have a daughter. Or because I may yet get to know another son. The implication that seems to me to be trending towards the hated "you can always have another" line that is the very definition, the very embodiment of the cluelessness of the world around us. The implication that, if extended as logic requires, would indicate that first babies who die lose their specialness, their importance, or the amount of grief allotted to them if or when their parents bring home a living sibling.

Had they lived, our children would be seen and counted as individuals, judged, hopefully, on their own merits. Do they not deserve the same in death? To be seen and mourned as individuals? To matter as individuals?  

So this is my point, a fine one perhaps, but one that has asserted itself as supremely important to me over the last couple of days. The experience of loss, the human interactions of it, the physicality, the treatment we get from medical professionals, from our families, from our friends, the ripples, all of that can be worse.  The situation any given mother or any given family may find themselves in can certainly be worse. Comparing is human nature, and it is ok.

But not when it comes to the babies. I believe that placing differential values on the children based on what else is going on with the family should never be on the menu. Denying me my grief does not speak to who I am or what I have, either in abstract terms or as compared to anyone else. What it does is minimizes my son, makes him less than a person in his own right. And that is just not something I can accept. 

What I believe about each of our lost babies, regardless of anything else, is that they were loved, they were wanted, they are missed, and they are grieved. Other things can be worse. But this, the place where we all started this journey, this place can't really be better.

In.vi.si.ble Boun.da.ries

Invisible, but I see them. Feel them intensely, almost as if they are branded lines on my very skin.

Is it because I created them, and thus only I can discern? Maybe.

I created these boundaries. I stepped over them to the other side.

When F died.

Most of the time, for the girls, I work hard to break down walls, remove boundaries and rip open the horizon further. Push the ceiling, destroy obstacles and burn down the limits. I want to show them, with a dramatic wave of my arm, “Look, girls, look! There are no limits, no lines. Skin color does not matter; what you eat for breakfast is of no significance. We are the human race, don’t let anyone convince you that you are anything less because you are different. Don’t ever let such boundaries trip you up. The world is yours, take it!”

Little did I know I only knew a small measly corner of the world. Before F died.

After F died, a trapdoor swung open and threw me into the world of bereaved parents. Totally unprepared for this unplanned trip, but a visa was granted. Swiftly. There were no guidebooks, no maps, and forget about a tour guide. Once you’re in, you’re in. Sink, swim, or float. Gulp some of that bitter water and swallow it; scream for help or yell for injustice. But once in, you’re citizen for life.

This world is right here, superimposed with the world of healthy, living babies, but not everyone knows of it. Sometimes a person will catch a glimpse of it, and will nod as if they understand. Only they do not realize that invisible boundaries separate us.

It is a world I sometimes have to slip out of, to conjure up some form of “normalcy” for the girls. Park days, play dates, library, shopping… … all those things we used to do. Only I know I do it with a different mind, and a different body. Often while on the other side of the boundary.

In the early months after F died, I built a brick wall up around me. In this little dark corner of the Republic of Grief I built my space, since it looked like we’re in for the long haul. And slowly, I started to probe around. I found other walls, and run my palms over them, tenderly, and gingerly. Yes, yes, some places feel so familiar! Yes, what you said! Exactly! That, that, you just fleshed out in your words. You speak my heart… … I found I was not alone.

The thing is, everyone in the Republic of Grief has dual citizenship, because they still need to be a wife, mother, daughter, sister, friend, employee, etc. Mouths need to be fed and bills need to be paid. Kids cannot survive on cereal for months on end and they need to be washed and their hair disentangled. You stay in the Republic for ever and ever but it is not a full-time hide-out. Sorry, but on top of the grieving you still need to go and scrub the dingy toilet and queue up to pay for your toilet rolls and/or frozen dinners. Some people require you to hurry up and get over it already so they can stop tiptoeing around you and just say what they want without worrying that you will be upset/hurt/sad/hysterical, etc.

So, like putting on a pair of very ill-fitting thong, with something always getting into the wrong space all the time, you try to fit back into the world where baby losses are a non-feature. You squirm and try to smile and valiantly act like a normal person would because really, you cannot freak out like a moron every other minute. But usually your awkwardness is overlooked in this grief-forgetting world. It is ok. Once you show your face all is assumed fine again.

Bu what can you do? You need that paycheck and your children need their friends and stuff. Moreover, can I really bury myself in this house until green mold grows all over me and my children outgrow all their clothing and have to wear dirty underwear three times over? Can I really wait till I am all-OK before venturing out? (And goodness knows if I’m ever going to be all-ok) So you go on, trudging and fumbling.

And you become acutely aware of these invisible boundaries that exist between you and the non-bereaved. In your mind, you make different lists and think different thoughts. Your heart beats different and flips over different things. Some words mean a different shade of meaning to you. Some dates are just h*ll to go through. Some hours of the day especially witchy. When you sit and eat together you are poignantly aware that you are swallowing something else together with that lopsided piece of quiche, and those half-decaying leaves of salad. And you wash down your foods with different thoughts in your head. You may go to the same stores, but a different memory is triggered in yours when you enter and exit (The last time I was here was to buy something to wrap his ashes in.)

You stand next to each other at the park, swinging your respective kids on the swings, observing the temperature trends and talking about diapers, but all the time this line is drawn between you and your friend. It seems you are standing in the same, physical space, but actually, that boundary puts you in a different dimension. You look at your friend and all of a sudden her words are just a jumble of mumbles, because her language is no longer yours.

Oh, you will never know, you will never understand. How I can still put hot food on the table and get out of the house looking decent, when every muscle in my body is aching for my baby. You have no idea. You have no idea how much strength, and how much courage I need to muster, with clenched fists and gnashed teeth, in order to get through every second of the day, until I finally collapse at the end of it. Behind every thought is the question, “Why is he not here? Why can’t he be here?” Every cell in my body writhes in pain with the memory of the loss, and the void. Every glance I take is in search of my baby. Every breath I take is caustic with reminders of what I have lost. My skin burns to feel the softness of my baby against me; my arms ache to hold and nourish and love. My fingers stretch out in an attempt to hold, but I do not even have memories, except of the pain and shock. My loss is the front-page of my brain every time it gets turned on, even if many pages are running at the same time. Oh, you have no idea what it is, how it is, to live life like this.

This invisible boundary exists. Sometimes attempts to erase this invisible boundary are made, like, “I know, my grandfather died five years ago. We were very very close.” Or, “Our pet toad died last week, it was really devastating.” But no, it is different to have a grandfather die than a baby die (and I do not even have the strength to think how devastated I will be when my beloved grandmother departs one day). Yes, any death is a big loss, including the death of a pet toad, and no accountant or mathematician will be able to put a value on our losses so we can compare.

But the loss of a child is way too different. Aches very different; hurts very unusually. The loss is a very intimate one, tied to our bodies. This child was once a part of you. His heartbeat was beating inside of you, with you. You fed him, nurtured him, curled up to sleep with him. You made promises to show him the world and to shelter and protect him.  And so a baby loss is very different. Unfortunately, the pain and insanity experienced by baby losses can only be known by going through it personally. And I would love to ban everyone from entering the Republic of Grief. Forever. That place should not exist.

Grieving is a full-time job. The intensity of it varies by day and moments and it is not necessarily always hands-on. But there is no leaving it, just getting to know it so well, wearing down its rough edges, so that you can carry it more comfortably in your heart, without having to bleed every second. Grieving is done not just in the Republic of Grief but also in the “normal” world. In the normal world our grief looks different, and our grieving is done differently.

And it creates invisible boundaries.

No words

I have no words for you. No words.

I imagined I might be more eloquent, having experienced the loss of my baby. But no, I have not become more eloquent. I know that pain of loss; I understand that yearning, but I still have no words. Not for you.

I overflowed with words after F died, and I poured them into my journal, then my blog. So many things to say, so many words fighting to get out of my head, wanting to be transformed from sounds to black words on the blank screen. So I wrote, and wrote, and wrote…

I thought I would have filled a whole bulging notebook by now, of things I can say to comfort. To let you know that you are not alone. That our children are always remembered, held in this bond forged by loss and love. That crying is ok, and that anger and profanity is fine.

I thought, I could fill in that pause for you, when you stop to search, to grope for that word that will speak your pain. I thought, I could make an outline for you, make a shape, and show you, "Yeah, it looks just like this." But no, I have tried and failed. I am still trying to find that edge, so I can feel around it, so I can frame it and really look at it and study it. 

I thought, as a thread in this quilt of grief and pain, words would just come to me. I would so flawlessly express the ache that every heart wishes to articulate. But, that is not the case.

I thought I would have a magic balm made of soothing words, that once applied, will take away your tears. That will at least the pain in your heart ameliorate. That can make hurt go away, at least for a little while. And to calm that throbbing heart that stings with pain.

But no, I have no words to put into that balm.

I thought by now I have mastered those ingredients of that special recipe of sad soup, that once drank, will course through your body and gather all those pain and sorrow, and then the soup, saturated with sadness, will sweat through your pores and vanish into thin air. So perhaps for a night you sleep in peace, forgetting mournfulness and grief for a few hours. And then, in your dreams, you will hear a song, sang with sweet words of knowing, to soothe that ravaged heart and sore body.

But no, I have no words. Not for that sad song; not even for a card.

I thought, after I have spent so much time banging on my keyboard, looking for the letters and stringing together words to express my own grief and angst, that I can just open my mouth and let my words reach across and touch you. To form a protective shroud around you to comfort you and bring you some light.

But no, I have no words.

Everything I can think of is either lame, stupid or plain clumsy. Everything I can think of comes out wrong once I type them. Everything I can think of, however much heartfelt, is not going to take away any pain or grief or hurt.

I have no words. No words at all.

I can only think of you, and your babies and children. I can only work hard to believe that because they are loved, they are in us, with us, and will never ever be forgotten. In this special space of bereaved and loss, our lost little ones have a special place. I see them. I do believe in my heart, deeply and desperately, that they are here, so close yet so far.

But I am sorry, I have no words.

Only when I read Sukie Mille’s book did I understand this. I have been writing before F was born, and after he died. I wrote and wrote, spewing out pages after pages of words. Only after I read her book did I realize that it was because there is no language for the discussion of a child’s death that I had to search so hard for words, to find that pulse that throbs in agony for being unspeakable.

It's All Fun and Games Until the Baby Dies

Just so you know, this was my submission for this blog's name, but I was overruled by the less cynical.  Hmph.  

But truth be known, it's not really accurate -- in my case anyway.  My pregnancy with Maddy was hardly fun and games.  A subchorionic bleed from weeks 6-18w, low-lying placenta through 28w at which point they discovered the echogenic bowel, which disappeared by 32w, all overclouded by extreme exhaustion brought on by selling my house in a volatile market, moving to another state, and continuing my role as the primary caretaker of my then 2-year old.  I should’ve been daintily sipping water, fingering fabrics for a unisex nursery (Maddy was a surprise, to say the least), going to the gym for mild exercise every few days.  Instead I ran off to the emergency room a few times when blood gushed down my legs, spent every two to four weeks on my back under the ultrasound wand, and daily implored my toddler to please, please just lie down for a few minutes so mommy could have some “quiet time.”

Maddy was in fact my third pregnancy; my pregnancy in 2002 ended in miscarriage around 8w.  So Bella wasn’t exactly fun and games either, even though hers at least kept the blood and ER visits to a minimum.  I go through pregnancies tentatively, cautiously optimistic that things will work out fine, but knowing full well that often they don’t.  With Bella I managed to remain detached enough to question the return policy on her nursery furniture – delivered when I was 36w; with Maddy I decided not to even set up the room.

One of the smarter moves I’ve made in my life.

In retrospect, I missed a lot of signs -- falling anvils, blinking red lights, screaming horns, black cats --  during Maddy’s pregnancy that perhaps were the universe’s way trying to tell me things would not end well.  A lot of bloggers talk about the “I knew I’d never really have my child with me” syndrome, but I guess I wasn’t that prescient, or I had my fingers in my ears, or had read enough mystery novels to blow a lot of it off as red herrings.  I kept waving my “perfect” amnio results around to bat away the bizarre plague of locusts.  But I kept my distance, and hindsight is 20/20 and all that:

There was the overwhelming amount of blood.  Which they repeatedly told me was not unheard of, and the baby was always fine, heart ticking away.  Which they told me in the post-mortem might’ve been my body trying to rid itself of the pregnancy and failing.

There were the little things that began going wrong in clusters, not just the echogenic bowel, but the car stalling out on New Year’s Day.  The washer/dryer collapsing around 35w.  The plumbers screwing up the installation of the new set.  The newly set deadline at my husband’s job, days before the due date.  Going to bed that week, praying for the baby not to come while her daddy was far away.   Going over my due date.  Going a week over my due date.  The sink was broken in my delivery room, and a plumber worked on it as I tried to sleep through the gaps of my induced contractions.

Not wanting to jinx anything, but letting it slip to a few people that this was absolutely my last pregnancy.  Never again.  I was never going through the stress and exhaustion again.  Period.  My husband always wanted three children, I always held up my hand and said “we’re stopping at two.  And I hold the trump card, dear.”

I didn’t want a shower (I didn’t with Bella either), but no one sent anything.  With Bella, a few people finally caved when things got close.  Not this time.  Maddy had nothing waiting for her on the other side.

Standing in my lush yard on a warm autumn day, examining my new forever-home, marveling at my lovely, gracious neighbors, and telling my husband I was waiting for the other shoe to drop.  And then placing my hand on my swollen tummy, and asking out loud, “what if the baby is the other shoe?”  He smiled and said nothing.

Never being able to look beyond the date of the baby’s birth.  That day to me was my goal, my dream.  Everything from that point would be all right.  I could finally put down the Doppler, and allow myself to accept the pregnancy as successful.  I never fantasized an older baby, a toddler, a child.  I dreamed only of getting the baby out of me so that I might better control things on the outside.  So I might spend two weeks, with my husband ensconced at home caring for my toddler, curled up with a newborn alternating between feeding and sleeping.   Sleeping.  I dreamed of rest for myself.  Peace in my head.  Relief.  Exhalation.  I never dreamed of the baby.

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

I’m always so impressed?  bewildered?  slightly perturbed?  by women who tell others of the their pregnancies when the second line turns blue, create a registry after the first OB appointment at 10w, pick names after the big scan at 20w, hold showers at 26w, enroll in their Lamaze and breastfeeding classes at 30w, and then pre-order their announcements, stock their freezers, and paint and decorate their future baby’s room.  Frankly, if none of this had ever happened to me, I don’t think I’d be one of those people anyway, not my style.  But now I’m so thankful I’m not.  I’m constantly heartbroken when I read women’s stories of canceling their showers, wondering whether and how to return gifts, and perhaps most gut-wrenching of all, dismantling their child’s room.  If you had prepared like this and then were clocked upside the head, I’m so sorry.  I feel as if I had it easy, that somehow I knew, that somehow my mind was telling me to create some distance, just in case.  I had very little to deal with materially after my child died. 

I knew things could go wrong, just not how wrong.   And I missed a lot of signs.  I did dream of this baby, without acknowledging it.  I did pick names, even though I never dared speak them aloud.  (The one we most wanted adorns her death certificate.)  I did figure out which room in my house would be hers, even though I never moved furniture or lifted a paint brush.  (It’s now an office.)  I did, eventually, around 38w, run some clothes through the washer/dryer and buy some diapers.  (They are all, diapers unopened, in plastic blue bins in my basement.)  I think I did know something was wrong, something about the way things were going, that it couldn’t possibly turn out well, that eventually the testing and the scans and the blood draws would come home to roost.  It was fun and games, my entire life until that day, I just didn’t know it until the day had passed.