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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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.

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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."

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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!"

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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.

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Your turn now, what's your silent refrain?

the dimension of time

What will it be like, remembering, or, forgetting, in a space vacuum of time?

What does time help us measure? How does it help us cope, or does the awareness of time aggravate our experiences?

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This past weekend we celebrated dd's seven-year-old birthday. She has been counting down to her special day since last year, double-checking the days on her calendar, counting each square three times over to make sure that indeed there is 57 (or any other number) days left to her birthday, and all that.

I presented her with the Mango cream cake she had requested, sat down and watched the warm glow of the candle flames dancing on her face as she sat and smiled while her father took pictures, and I thought, "I have been a mother for seven years."

Of course, seven year is nothing in the big context of Time. Barely a drop in the ocean. But, it is seven years of my life. The total of my daughter's life. It felt so short, and yet so long. Most of all, it felt incredible.

Of course, I thought of our little Ferdinand. Sadness came into me, as I swallowed my tears and thought, "He would never know how this cake tastes like." He would never eat anything that I bake or cook.

If seven years is barely a drop in the ocean of Time, then, his time, earthside, is barely even an atom. I think this is what kills most bereaved, that brevity. Not enough time. Too short.

So, we turn things around. I changed my way of thinking. I see him as forever and eternal. Always been here and always will be here. Not confined to the form of a baby boy, but an eternal Spirit that is undying and indestructible like the omnipresent dust.

(And then sometimes grieving starts to feel so eternal too.)

Some time ago I was reading a book with dd about how people started to celebrate birthdays. Long, long, long ago, people did not celebrate their birthdays. At least, not commoners like us. Even longer ago, the idea of celebrating a birthday was not even there. Because, long, long ago, people have yet to figure out the concept of time, and how to calculate it. For a long time, they just sat and rubbed their stone tools together, trying to make a fire. If it takes them "five days" to stalk and capture an animal, then it is just whatever it takes to get food; and how long the food fills their stomach is simply how long it does. But as they sat and scratch the earth and figured out fire, they noticed that the weird shiny object in the sky changes shape with a regularity. Earth, moving in a rhythm in silent agreement with the Universe, brought light and darkness, and the moon to humans at regular intervals.

Somehow, between spitting and scratching heads and pondering and fighting and ruminating and making peace, our ancestors found out a way to keep track of time. Calendars came into being and now we all get a way to be on the same page. (At least to a certain degree.) I do not say, "When the half-moon is directly above the oak tree in the far corner of the yard, we can think about having sex." I can plan weeks ahead what to do, when to meet friends, set deadlines for assignments, set goals for whatevers. Knowing that time will unfold regularly and without fail, helps. And sometimes, strangles.

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Recently, a friend wrote to ask for pictures of my "three children". He asked what is the name of my youngest and how is life with three kids. It made me keel over.

Because for ten months they had thought and imagined us in bliss, leading a busy and crazy life juggling three kids. But instead we were grieving.

Would it had been easier if he had emailed me one month after the event? Yes.

Would it had been easier if, for some reason we lost touch for ten years and then we met and he asked? Maybe.

Why is ten months so hard?

I don't know.

Maybe because it is two months away from one year. Just two months away from the full cycle of one year, when we would have celebrated his one-year-old birthday.

But I am not exactly sure why.

Why do we sit and count the days and weeks and months like this?

Why do we sit and imagine all the could-have-been's by the days and weeks and months? -- This month he could have been sitting. This month he might be walking already! This month he would be two years old. This month he would be going to school for the first time in his life, etc etc etc.

If we sit in a vacuum of time, would grieving be easier?

If we have no knowledge of how much time had lapsed, would living be easier?

When there exists no more measurements of how long, how short, how fast, how slow, how much, how little, how frequent or how often, would it be easier?

I don't know. Still trying to figure it out.

grade me not

So once, when some (!!) people said and acted really insensitive and stupid to me, I cried. Not right in-front of them. I was hypocritical, weak, and dumb. So I acted like it was ok but once home I burst into tears. And so poor R had to comfort me and he told me, "In times like this, you really get to see the true mettle of people. You know what they are really made of."

Whoa. That made me tilt my chin up. Huh! Now I have been placed in a position where I can judge and evaluate people, woo-hoo! So, based on what they said or did not say; did or did not do, I get to grade them, yes?? I get to tick off what they are made of. Heck, if they appear in-front of me wearing a shirt the wrong hue or a pair of sandals I just hate, I can give them a thumbs-down and put them on a black list with skull-bones and hissing snakes as border. Wow. It's like getting a new toy.

Except, very soon, a small little voice in me asked, "So you think you can judge them because your baby died?" I have flashbacks of soap operas or movie scenes wherein one accused the other, "Don't think you can judge me just because you are blond/taller/bigger/fair-skinned/older/skinnier/younger/drive a fancy car/have a PhD, etc!!!" There was not one that said, "Don't think that you have a right to judge me because your baby died!"

No, I have no right. Sure, there are dumb ones, clueless ones, obnoxious ones, whatever ones, but I am sure at one point or other in my life I was also dumb/clueless/irritating/annoying/obnoxious/crappy, etc.

So, I was deflated. Chin down to chest. I slumped back down into my little corner to ponder life after a loss.

BUT. I was not left alone.

There are people who think they can judge me because my baby died. Grade me even. You know, how well, or how awful I am coping? How slow I am getting out of my grief. How bad I am mothering my two living daughters. How I could have done more. How the house could have been neater, since I do not have three, but only two kids to handle. How I must be in self-denial. How I am ruining my children's lives. How I should be over it already, and quick! have another new baby! How I think too much. How I am thinking the wrong way. How I am blah-blah-blah or how I am not blah-blah-blah. I am either too blah-blah or not blah-blah enough.

I don't need all these evaluations, judgments, or advice. Unless I ask. And sometimes, I do like to know, like if I totally am beyond salvation; if I should just go jump off a cliff already, or if i have a halo above my head. If the cake I baked is out-of-this-world or awful-inedible. If I really should get some hot-pink lacy underwear, or if my face resembles a prune by now. But, often I get unasked for judgments and evaluations, and even more harassments, without my asking. I just need to stand there and whoosh--- watch out! there they come.

Why? Is it just an expression of the overwhelming need to be of help? And thus, they have to give an opinion of how I am doing? Is it an art of conversation? To tell the other where they are on a certain scale? (Good/not bad/ failure/ try again)

How do they know? What makes them the expert? What makes them think that they know? But really, if they wanna help... come and clean my house. Come and cook my meals and do the dishes and scrub out the kitchen grout. Buy me a good supply of expensive chocolates and/or truffles (dark ones ONLY, please). But really, if you cannot bring me back my baby, just sit there. Just hold my space.

Sigh. I just want to be a human being. That means, I am not static, even though it may look that way. But bear in mind that you are not in my skin, and looks are deceiving. Being means to be, and that -ing part means ongoing. To me it means constant change of the state of what one is. From one second to the next; from one breath to the next. Even if I choose to remain in a state for a longer period, it is my decision. It is my journey to walk. (If you tell me everything happens for a reason, then maybe there is also a reason why I need to freakin' dwell.) The best you can do is walk alongside with your mouth shut, unless I am stepping right off the cliff; or a bear is breathing down my neck already or you can run and get me water when I run out; or keep watch for me when I need to sleep. And you know what, journeys are not necessarily made in a straight line. Not every journey is a straight line between destination A and B. Sometimes it is a circular path that needs to fold over and revisit some places. I sometimes think it is a spiral, always coming back to some same points, but passing with a distance, and it is never static. Although sometimes I do need to sit down. Or lay across the road. (If you come across me like that, step over. Please do not try to evaluate if I am dead or alive.)

But please, let me be. Just like I have no right to judge you because I lost my baby; you have no right to judge me because you have not lost a baby. Especially if you do not get it. Don't tell me what to do.

I know, the line between being concerned and being intrusive is very fine. Sometimes it takes intrusion, a gentle one, to express concern. It truly is not easy being a friend to one who walks the grieving/healing path. So I thank all those who have done so and for being so patient and wonderful. And those who have stuck around despite my sour face the last months? Precious.

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What about you? Do you feel judged and evaluated? Do you feel concern is sometimes intrusive? What are the best ways someone can express concern without making you feel evaluated or judged?

my son may be in your vacuum cleaner

Seriously. You may wanna go check.

Ferdinand was cremated. There is a possibility that some of his ashes, minute particles of them, escaped the plastic bag that it was supposed to be loaded into and tied firmly and then placed in a plastic box and then a velvet bag and then handed over to us with sympathies.

Some of the ashes may have flown undetected onto the floor of the crematorium and carried about by the shoes of the good guy who helped us cremate our son. Maybe some tiny particles of my son’s ashes got onto the good guy’s shoes and it got thumped off at the post office when he went in to get his mail and some of the dirt was sucked up by the ventilator which re-circulated it into the mailroom and got shuffled into the mail and then got stuck onto a part of an envelope and maybe that envelope is somewhere in your house.

When his ashes arrived in Singapore, at the temple, and they were emptied, from plastic bag to urn, and the breeze, almost ever-present, might have swept up a whiff of the ashes, and they got mixed into the food being prepared for the temple lunch. Or, it got stuck onto somebody’s sweaty arms (it is very humid there) and got carried all over the small island-state, or that somebody got onto an airplane headed for the Swiss Alps and so a part of Ferdinand ended up in a different continent. Have you had a guest recently? Check their shoes, you may find my son.

Before he was cremated, I held him, hugged him tight, and kissed him. Tried to make an imprint on him and tried to engrave his body onto mine. Maybe some of his skin cells were brushed off and stuck on to me, for a few seconds. Then, they may have fallen onto the floor, and got swept out of the funeral home as we exited. The wind from the hills may have swept those cells up, carried them across the country, and dumped them somewhere on the East coast.

The dust may have fallen into your house when you opened your door or your window. You decided to vacuum the house. And there he goes, into your vacuum cleaner.

Or, a few molecules of my son’s ashes may be fertilizing your tomatoes right this very second.

I do sound like I am spinning a tall tale, aint’t I?

Except, we know that everyday the world is on the move, in every sense, whether you take the macro- or micro-view. Foods are transported over long distances, and with them, dust. Air circulates, moves over distances, taking sounds and smells and small tiny particles, including human ashes, with them.

Dust is very tiny. Anything smaller then one-sixteenth of a millimeter in diameter can be defined as dust. They come from everywhere and from anything- dirt, pollen grains, tire rubber, salt sprays from the ocean, skin flakes, fire ashes, volcanic eruptions, desert sands, animal fur, and, let’s not forget about cosmic dust. You may have star dust in your vacuum cleaner too.

When a supernova explodes, it sends small particles of dust far out into space, and some of this dust falls on Earth. You may find some of these cosmic dust particles inside your nostrils.

What is more fascinating is that you cannot destroy dust. You dust, vacuum and sweep, and pour everything into your garbage can and think it is good riddance when the garbage truck rolls around on Monday morning. Well, some of that dust is still on your driveway because when the garbage gets dumped, air gets moved and the air moved the dust too. Rumor is, dust from the dinosaurs still remains, because there is no way you can destroy dust. They move around, get mixed into things of all sorts; things break down, and the dust re-surfaces again.

Come to think of it, dust is a beautiful thing. And so indestructible. So durable, it is forever. Forever swirling around. Here, in my house; there, in your house; on earth, over earth; in the vast Universe, and probably beyond too. Ferdinand, my baby, in my current system of belief, is part ashes, part dust, part soul and part spirit. And so he may well be everywhere right now.

Perhaps in your vacuum cleaner, too.

I will never look at the world the same way again. I will never see dust the same way ever again.

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.