what they say

You'll hear these words again and again, sometimes as a reassurance, sometimes as an explanation, sometimes, it seems, simply as a mantra: "everyone grieves differently."

"Everyone grieves differently," they say, "Oh, yes, everyone grieves differently. You know, everyone grieves differently." They say it, but it isn't true.

Everyone seems to grieve in remarkably similar ways. There's the chasm, the stumble, the stagger, and the fall. There's the cold, the silence, and the dark. There's the shattering, the splintering, the grinding, the rending. There's the strange language in low whispers. There are tears that strangle and tears that scald. There's the chain of words around your wrists, the story worn out by the telling that always ends in exactly the same way.

There's the wearying round of repetition. The first month, the second month, the third month. There's the ever-recurring day as the weeks gain ground. There's the first Christmas, first Easter, first Mother's Day. Then the whole year has gone and the counting begins again, but more quietly this time.

Sometimes there's the stake and sometimes there's the stone, the garden, the poppied field far from the swing of the sea. There's the shadow and the apple blossoms, the thimble and the stitches, the cypress and the yew. Everyone grieves that way. Everyone, it seems, except for me.

"You can't compare pain," they say. But that's not true either.

I lift your grief in one hand, mine in the other. I balance them against each other, gauging their heft. I lay them side by side and measure carefully. Mine always comes up short.

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.