equations

This month's guest writer D. describes herself this way, "I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, or the average of 2.5 days which is exactly what she gave us." D. blogs about raising her toddler daughter, grieving her second daughter, and the life that occurs in between at Still Playing School. Please welcome D. and join the conversation. --Angie

As we anticipated our second daughter's death and soon after we lost her, other parents would approach me with lowered eyes to start a conversation about loss by saying, "It's not anything like what you've been through, but we had an early miscarriage..."

My response before they can share the intimate and welcomed details about their child is to explain that there need not be any quantifiers.  This is your baby who you can't have with you each day.  It's a loss, a death, someone to grieve, whether you named, held, nursed your baby or not.

We learned when we were five months pregnant that Violet wouldn't live long after she was born, if she was born alive at all. Through the power of the internet, I found another mother 5,000 miles away whose beautiful daughter was also named Violet. Our Violets had the exact same rare chromosome abnormality diagnosis. Her Violet's middle name was also the same as my older daugther's first name. I got chills and emailed her.

While the coincidences that allowed me to reach out to her were uncanny, the differences were stark.  Her Violet had been still born.  They didn't learn of her diagnosis until after she was gone. Months later, when our Violet was born, she lived 2.5 days.

"I can't imagine knowing you were going to lose her," she sympathized.

"I can't imagine not knowing," I replied.

When we received Violet's diagnosis, we stopped the typical preparations, which was so unnatural.  My hormones urged me to buy diapers, set out the bassinet, and wash baby clothes as my belly swelled with her.  Yet we prepared for her arrival in other ways, meeting with funeral directors, gathering mementos to create, and planning with the palliative care team at our hospital.

We stopped decorating a nursery.

My friend returned to a ready and waiting home where her child would never sleep, to clothes she would never wear.  I cried when I saw the picture of her at her baby shower with pink clothes piled up beside her.

We hurt for own unique children, yet we mourned for each other as well and we felt those differences so deeply.

We might wonder if it is it better to have a fatal prenatal diagnosis or be caught off guard.

Is it more painful to lose a baby or a child at age 2, 5, 10?

Can we compare the shock of a car accident to the way your hope slowly trickles away as your child faces a terminal illness?

We can't create equations to compare the pain of losing a child.  There are no greater than or less than signs.  There are knowns and unknowns, but both have the same amount of pain attached to them.  The loss of a dream for your future, but also the loss of a very real person.

Did you know before your baby or babies were born that they may not live? Have you thought about whether you would have liked to know your child or children's fate if you didn't know, or not know, if you did? If you didn't know your child would die, would you have liked to know? Or if you knew, do you imagine whether it would have been easier not to know? Has the death of your child or children changed the way you will approach or have approached subsequent pregnancies in terms of prenatal testing? 

What They Say

Today's post isn't going to be lyrical or beautiful.  It's not going to uplift you or share a new perspective on the terrible tragedy of losing a baby.  And it also contains a fair bit of swearing so be forewarned.  

Today's post is about other people, the ones that have all their kids and don't know one single thing about how to talk to us, how to behave like a true friend, how to navigate in our dark depths and instead say incredibly stupid and insensitive things without using their heart or brain before opening their mouths.  So, let's start with my favorite:

"Well, everything happens for a reason."

What I want to say & do in reply:

Oh really?  It does?  So when I wind up my arm and clench it into a fist and punch that person directly in their disgusting, thoughtless mouth, I can just chalk it up to 'everything happening for a reason?'  What a relief!  I thought the Universe was just random, brutal and unforgiving, but here you are with your deep wisdom born of nothing, telling me I can do whatever the fuck I want because hey!  It all happens for a reason!  And the reason you are flat on your back from my knuckle sandwich is because you're an unthinking, insensitive ass.

What I say instead:

I disagree.  There could never be a good reason for my son dying.  What you are saying is very offensive to me, and I would appreciate it if you would keep those sentiments to yourself.  I know you're just trying to help, but it's not and you aren't and please, please stop. (or else, see above, I say with my eyes)

"Whatever doesn't kill you makes you stronger."

What I want to say:

Hmmm, let's see, no.  Not true.  Some things that don't kill you make you weak and fragile and bitter and sad.  Some things, like losing your child before they had a chance to make a breath or live a day, make you hollow and desolate and open your eyes to how bad life can get.  The strength I relied upon to live through that terrible experience came from who I was before he died.  His death did nothing but rip the naivety and innocence from my soul and lay the world bare in all its brutal viciousness.

What I say instead:

My son dying didn't make me stronger.  It made me nearly dead myself, and I'm not stronger for his death. I would have been made stronger by getting to be his father. What you are saying is painfully insensitive.  Please stop.

"At least you're young, you can have another."

What I want to say:

Wonderful!  Thank you so much for being a fucking idiot.  Because as you know all kids are replaceable. One breaks or dies, just go out and pick up another one.  How about this?  How about I take one of your four kids and raise it as mine?  After all, you've got plenty!  Spare one for someone who misplaced theirs when they fucking died.  How about it?  Since you're such a dumbass you will probably raise awful children anyway.

What I say instead:

Nothing.  I say nothing to those people.  I just look at them for a moment, shake my head and walk away.

"God works in mysterious ways."

What I want to say:

Fuck you.  Get out of my house.

What I say instead:

That's the stupidest thing I've ever heard.  If this is God's mysterious way of teaching me some kind of lesson, He/She/It can go fuck themselves.

"Is he your first?"

What I want to say:

Why do you want to know?  Or are you just asking things without thinking about it?  Do you really want to know about my first, about how he died?  About how we are still devastated by his absence?  About all our hopes for him and us dashed against the black shards of death?  Or are you just some blissfully ignorant stranger who can't keep their mouth shut and don't really give one fuck about us at all?  Ah, I thought so.

What I say instead:

No, our first son died due to complications during birth.  Then I just look at them while they crumble into despair and I think to myself be careful what you ask people, they just might tell you the truth.

~~~~~~~~~~~~~~

What insane, awful and horrific things have people said to you when they learn that your child died?  Let's rage on this together with the only people that know the truth and feel a little better by getting it all out for once.

tattered and faint

The plastic hospital fork felt slippery in my latex-covered hand as I fed my mother unpleasant mashed potatoes.  She hated the taste and that she had to be fed and I hated having to do it, but neither of us had a choice in the matter.  MS is a brutal disease and this most recent trip to the hospital was as enraging and scary for her as it was brutally sad and awful for me.  But my presence made her feel better, and I would do anything I could to help her heal enough to get back home.

I ate alone that afternoon before I went in to see her and I could feel my sadness as a physical presence in my body.  Silas's death was not an inoculation from grief.  I learned many things from that experience but one of the most important was that the only way through it is straight ahead.  I also learned that silence and aloneness and grief are utterly tied together for me.

Sitting in that restaurant yesterday it felt like an old familiar poison coursing through my veins. I felt more than just alone.  I felt a complete Otherness, like an alien in my own skin, totally cut off and unlike anyone else in the establishment.  I also knew I appeared absolutely normal and that no one there would ever suspect my blood had turned sluggish and thick, that my guts had a hole in them bored straight to Hell, that my heart was clenched like an angry, angry fist and that my soul was tattered and faint once again.

Silas's death was sudden and impossible.  That perfect pregnancy shattered in an instant and I felt cut to pieces.  My mother's sickness is a slow grind of failings and infections but the shock of a loved one in the hospital and in mortal peril is equally devastating in much the same way.  I guess that is what happens when hope is revealed to be nothing more than a wish, and that health and life are revealed as fleeting and delicate.

My mother may yet heal enough to go back home, but she won't walk out of the hospital.  She has not been able to walk in years.  She may battle off this latest infection and be granted a few more years but it is impossible to know.  It is terrible, but I cannot help but look at her and know that someday, someday sooner rather than later, she won't be here anymore.  It turns out that despite the years of crying after losing Silas, that I have not used up my life's allotment of tears.

Sometimes my grief is all-encompassing, transforming the world around me into a pale, featureless void that echoes the endless blackness within.  Sometimes it compresses into that angry knot gripping my heart so that I can breath and eat and live but only with great effort.  Every now and then when things are particularly good, that sadness is reduced to a tiny, dense speck that I can almost overlook except that it is so small and compacted and ridiculously heavy that nothing can move it from the core of my being.

I can't make it be anything else than what it is, though, and the only way to endure is to breath as deeply as I can, let the pain wash through me as tears and shit and rage, and try to force another tasteless bite of food into my body before I go and help my mother do the same.  Her incredible strength and will to live has kept her going for thirty-eight long years with MS.  Her example was what gave me the strength to battle through the worst of my pain when Silas died, and now I have to be strong for her, too.  I know I can do it because I've already done it, because she showed me how.  I just hope I have enough for all of us.

How has the loss of your child or children altered your sense of sadness and grief?  Have you had to deal with losing other people in your life since you lost your child?  How was that grief different or similar?  What does your grief feel like in your body?

One blushing shame, another white despair

We are in a cafe. I blush and stutter. I look through my eyelashes at our neighbours, laughing into their lattes. I murmur, fearing their ears.

We are at my house. I breathe in and unseal my lips in a tiny gesture of anticipation. We are friends, confidantes. You are unshockable in the presence of my grief and rage. But now I am aware of the couch we sit on, the bedrooms above us.

So perhaps it is better that we are in neither of those places. You are there. I am here. This is silent noise. You can adjust your features so that they appear neutral, impenetrable. No one need know that this is what you’re reading. Unless you blush too.

Because here is the thing, the topic, the theme, the issue, the matter at hand. Here is the subject of this post. It’s... it’s... it’s... sex after loss and there is no pretty or dainty or literary way to say it other than that:

Sex after loss.

And what a complicated and difficult subject to address. In grief you yearn. You yearn for a little body, a milky mouth, a tiny foot in the palm of your hand. Is there room for that other yearn, that other want? To need, to desire: they have different meanings now. And now sex becomes about another baby, or not another baby; about bodies that don’t do what they’re supposed to. Bodies mean pain, or sick, or tired. Bodies are small and covered in wires. Bodies are still and cold. Bodies are not the colour of your lover’s skin, but mottled and blue.

Some people are drawn together and some are wrenched apart.

We were wrenched apart, but still we came together. We wanted our baby and so we were naked in our nakedness. And so another baby came. But that is not a given for our kind. There is no guarantee of fertility or of the end result. The end result: the one that seemed so certain to me all those years ago as I stomped up the stairs of the sexual health clinic in second hand army boots, for condoms and pills and other armour.

We are all different. You might believe that my kind of sex neither takes its appropriate form nor serves its appropriate function. You might have stomped up stairs for the same reason I did, or you might find that abominable. You might have loved it, or not. You might have shared it with many people, or with one. It’s political, it’s personal, it’s universal, it’s fucking everywhere. There’s fucking everywhere. In the same way that in those early weeks after Iris died every woman was pregnant, every commercial was for baby paraphernalia, every goddam Facebook status update came with a fuzzy ultrasound photo. Everywhere, everywhere, everywhere, until sex WAS loss and its expression evidence of the distance between us.

I pause and exhale. My hands push in to my eye sockets. I wish we were in that cafe, or at my house, or better still at a bar with an infinite  line of tequila shots and a cute bartender, and I would shout ‘SEX!’ too loudly, and everyone else would blush,  and we would cackle instead of cry.

But instead you are there, and I am here, and now I have to ask: how was it for you?

Has sex changed for you in your grief? Why? How? In what way? Be frank, be euphemistic, be anonymous, be however you want to be, but please tell me.

good grief

'Tis very true, my grief lies all within; 
And these external manners of laments 
Are merely shadows to the unseen grief 
That swells with silence in the tortured soul; 
There lies the substance: and I thank thee, king, 
For thy great bounty, that not only givest 
Me cause to wail but teachest me the way 
How to lament the cause.

A voice. It sounds as though it is coming from far away although its source is right next to my ear. "Stop it. You're embarrassing yourself," he hisses at me. I don't respond. I don't stop. "You're scaring that little boy." 

I can feel his muscles tensing, wanting to move away from me. But he doesn't.

I have fallen into parts. A dry, thin, Greek chorus of me hovers up close to the ceiling. Tutting and disapproving. Scathing. All this emotion. So very florid and unprepossessing. It idly ponders things like the upholstery on the chairs and the many layers of gloss paint on the hot water pipes, painted and repainted over and over again. Bored with the hysterical fit taking place beneath.

I note the frightened face of the young boy with distant horror. "Shut up, shut up, shut up," I whisper at the collection of other fragments of me gathered on the floor of the same hospital corridor.

They form a fleshy tube designed for howling through, with my physical features stretched and wrapped around its outside. They slump on the floor, melodramatically collapsed. They wail and leak. And continue to wail and leak. Blood, milk, water, phlegm. They are beyond being reasoned with. 

The distant pieces inform me that I should be embarrassed and mortified.  And I am sorry for scaring that passing little boy. Very sorry indeed. It seems to me that his mother has an accusatory glint in her eye. But I cannot stop.

He looks at me, my husband, with a look that has been repeated many times since. 

You are doing this all wrong, you are very strange and you are a stranger to me. You are, not to mince my words, completely and utterly batshit crazy. My wife, what on earth has happened to you?

***

This is not how I thought I would react. I had an idea, before I had experienced any such thing, that I would be elegant in grief. Graceful. Gracious. I imagined that I would retain my kindness. That I would be considerate. That I would be the tower of strength that others could lean against. 

But I never imagined that the first death I would contend with would be that of my child. My three day old daughter. It transpired that I simply couldn't grieve for her quietly or discretely. This experience knocked my small claims to calmness, stoicism and compassion over the head and carried them off. Leaving a space to be occupied by my inner banshee.

Death didn't barge in. Not yet.

I still wanted to pretend that I hadn't even seen Death come in at the door. Because, in my childish grief mind, if I didn't see Death, perhaps he wouldn't see me. Or them. Besides there was no room for Death. There was no room for anyone at all apart from me and my daughters. I barged in on myself and squashed my face into my own face so hard, that I could no longer see. There was only me. My grief. My pain. My own closed eye pressed up against my own closed eye. Forming a greedy trinity with my children that occupied my entire field of vision, relegating my husband, my sister, my mother, my father, manners, social conventions, simple human decency, all to the peripheries. 

I was not the ascetic grieving mother, dressed in black with a single tear welling in the corner of her eye. Grief didn't endow me with restraint or wisdom. I was a despairing, empty thing with a ravening maw. Cramming myself with sweet things, fussing like a toddler over being too warm, too cold or too tired. As though all the inhibitory circuits in my brain and the taboos ingrained therein had been abruptly switched off. I wanted to scream and drum my heels deep, deep into the ground. Eat twenty three packets of chocolate biscuits. Walk around all day wrapped in a duvet. Storm around in tears, unable to contain anything, sending it all spinning out into the ether. 

But a few weeks later, I woke up, showered, dressed, brushed my hair, applied my make up and drove to the hospital. I sat quietly by the remaining incubator. Tears moistened the corners of my eyes. When one of the nurses asked me why I looked so grumpy, I replied, "Oh, that's just the way I look. No need to worry. I'm fine."

An internal switch had been thrown and I can't go back. To that greedy, grasping, uninhibited sadness. Sometimes I almost regret it, almost miss it. I don't think I'll ever cry for my daughter on the floor of a supermarket again. No matter how much I might feel as though I want to.

***

I am not proud of my behaviour in the immediate aftermath of Georgina's death. I have had to apologise to many people. But I don't know how to find that little boy or the young man who rounded the corner of the supermarket aisle looking for a tasty snack only to be confronted by a wailing woman in amongst the crisps. 

At the time, it didn't feel anywhere near enough. Part of me wanted to make even more fuss, to scream louder, to tear my hair and rip my fingernails out and leave them in a pile in the corridor, to scare more passing children. Surely my daughter's death deserved to be marked by more than the scaring of one paltry little boy?

At other times, it feels like too much. How could I have done that? How could I have folded in on myself so weakly, so comprehensively? How could I have frightened that little boy and embarrassed my husband? How cruel and how selfish.

Nobody can teach you how to lament. You can only muddle through in your own fashion. 

And no matter how public the display, or how private the lamentation, it would have been only the merest shadow of that unseen grief, the substance of which is known only to me.

Do you feel that there is such a thing as 'good' grief? Some sort of standard (or polite) way of behaving in the event of a bereavement such as this? Do you feel other people might be holding you to this standard, judging your grief as a success or a failure? Are you even judging yourself? 

Do you feel you let everything out or kept everything in? Do you feel proud of how you grieved? Or do you, like me, look back slightly shamefacedly?

Beautiful Empty

It was a Saturday, 8:30 in the morning. I was humming down Orange Grove Boulevard on one of those rare, glorious Los Angeles overcast days. A gray fog hung around lazily while the landscape seemed to be collectively exhaling, on account of the sunless sky, which normally burns and glares and sears until this desert landscape is charred brown. Trees drooped in thanks, flowers lay still, doing their part to not jinx the unfamiliar sky. Even the sidewalks and streets were near empty, as if work and play and errands and coffee were traded in for longer sleep in darker rooms.

I was alone. My mind seemed to match the stillness with one of those rare states of near nothingness, where thoughts and ideas and people and conversations and to-do lists and worry are replaced with what is only visible to the immediate eye. Red light. Green light. Trees, houses, fence. Turn left. I relished the unusual clearness of mind.

It was in this peaceful state, this nothingness, when Margot suddenly rushed up to the surface. Her being, her name, the idea of her seems to have taken up residence in my pores and under my skin and in all of the recesses of my mind that I never knew existed. Out of all these places, she rose up, speaking to me in this nothingness. But this particular morning, it was just her.

Her. Margot. Without everything else.

There weren’t any questions about the future state of our emotions. Will we be happy again? How happy? Will our grief continue to evolve? Will the sadness ever really feel lighter?  What happens if she starts slipping away? There weren’t any thoughts about friends who have let us down or those who have been there. There wasn’t any anger. There weren’t any concerns about impending situations of social anxiety. There weren’t any dark thoughts about her death and cremation. Or frightened memories of the hospital and almost losing another life. There wasn’t any confusion over the philosophical questions of life that have resurfaced. There wasn’t any anxiety over the possibility of future children or losing the living one we still have. There wasn’t any jealousy over the happy and innocent families that took their babies home. There wasn’t any hurt over insensitive comments or those who diminish or ignore our heartache. I was free of disappointment and depression and regret.  In this moment, it was just my Margot, in the purest form of missing, without all the baggage that usually clouds up her absence. It was, perhaps, the first time the missing held me completely captured since the first time I held her in a darkened hospital room.

I pulled over and cried out for her as I did in the hospital. I screamed her name. I spoke to her as a Father speaks to his children. The brokenness was as raw as ever, yet it left me hanging delicately in a state of calm. The missing felt real, felt good even.

How nice would it be if grief were this tangible, this straightforward? How convenient to simply miss our kids off and on through the days and years, not having to face the other elements that come with grief?

Because so much of the time it’s not just her anymore. Somewhere along this lonely path, the worries and jealousy and concerns and confusion and hurt and anxiety and over analyzing and constant evaluating have ganged up, in an organized mob attempt to distract from the very core of what matters.

My daughter, my second child, the one who should be pulling ornaments off the tree, is missing. And, well, I simply miss her.

Are you able to simply miss your own children, or do you feel the weight of other elements of your grief? Does the simplicity of the missing grow over time, or do all of the other elements to grief get stronger?