Coming Home

Sapphira's first child, Shoshanna Clementine, was born at 37 weeks on March 23, 2011. She suffered from pre-eclampsia and went to the hospital to be induced.  After a placental abruption at the cord upon pushing, Sapphira ended up having an emergency c-section.  Shoshanna died three hours after delivery. She shares about herself, "I don't have a blog and hardly write, but I am so grateful to the Glow community that I thought to submit something as an expression of my appreciation and love." In April 3, 2012, Sapphira delivered her second child Julia Zahara. Please welcome Sapphira to this space and join the conversation below. —Angie

"Metaphor is a kind of mental changing room, where one thing, for a moment, becomes another, and in that moment is seen in a whole new way."  —Dr. Mardy Grothe

After Shoshanna Clementine was born and died, I tried to digest what was happening in my life by trying on all kinds of metaphors to explain, understand, or reframe events and emotions surrounding our loss. Different ones worked at various times.  For a long while, I was Indiana Jones jumping from stone to stone, feeling secure and strong with each step, but the earth was furiously shifting up and down, right and left, underneath me, as I ran endlessly to safety.  But none of these metaphors felt lasting, and none of them truly captured what was going on.

Then, one day I was painting with a friend, and a visual metaphor started to emerge, although I only saw it a day or so after the picture was complete.  I painted grass at first—the solid ground.  The pond that was to be next turned into a sea.  The sky followed, vast, taking up more than two-thirds of the picture.  I had to put in a moon, of course, a nod to my father who I always think of when I look at the moon.  As I stared at the open space of sky to the right, a teacher at the studio where we were painting came up to me and suggested I add birds to the scene.  With my permission, he lightly made some squiggle lines, and there was my metaphor.  The three birds were Shoshanna, Seth, and me.

Shoshanna is the largest one—indicating she is closest to the viewer, the one closest to shore, the one leading us back home.  "Let me show you the way," she encourages us.  It is dusk, and I am grateful she is taking us back—back to our home that we love so much and back to our hearts--to find that the broken heart we endure is actually more whole than ever before with her help.

I feel like I have been out to sea—away from the world—far, far away.  With all the navigation systems we have now, I've been able to stay in touch (emailing and texting, lunch dates and movies), but it has been isolating.  And yet Seth and I haven't been alone, really, because there are other people out here on this sea—on the waves with us, flying with us in the sky.  Others who have lost a child too. And while I've felt so far away, I have heard the cries of friends and family from the shore and the whispers that have traveled across the waves to let us know that someone else's heart aches too, that someone else misses Shoshanna besides us.

I'm waiting for this metaphor of coming home to shift and no longer apply, another one to replace the next emotion, the next phase.  But, maybe if I also look at my painting as going the other way—that Shoshanna is behind us, as we lead her out to sea—then I can give myself the permission to come and go as I please, that I can come home when I need to and go out and cry into the ocean when that is what I need.  For isn't that what being home means?

What does home mean to you? Do you have a painting, song or other metaphor that represents your grief and loss? What is it and how has it shaped your understanding of grief and your life?

balancing, act

I like Matthew Perry. Not, as many people of my generation might, because of his role on Friends, but rather because of his guest spots on The West Wing followed by his starring role in the sadly short-lived Studio 60 on the Sunset Strip. (If you love musical theater and good comedy, look up their second episode, The Cold Open. I still smile when I think of the number that is the namesake of the episode, the one they are working to the whole time. But maybe it's just me. Likely, even.) So it is not entirely surprising that even though I usually try to watch what I can in DVR delay so that I can fast forward all the commercials, I stopped and watched the ones NBC kept running for Perry's new show, Go On. The show premiers tonight, but the pilot episode has been sitting On Demand since Olympics, when they started running the relentless promotion.

Do I sound like the TV Guide up there? Sorry... I think I got that all out of my system now. So let's get on with the main event-- the show and what we think of it. Well, what I think of it for now. Though I am hoping that (provided my description doesn't make you want to destroy the TV rather than watch the show, which I hope it does not) you watch it at some point and chime in. Or vote early, vote often-- comment before you watch, comment after you watch. Heck, comment instead of watching.

Why, you ask, am I darkening your screen with a post about a TV show? For one, the main character, Perry's character, is grieving. We learn in the very first scene that his wife is dead and that he shows up back at work way before anyone is expecting him to be there. Shortly after that, he is told to get his loudly protesting self to group therapy. Grief sitcom, then? Why, yes, and I am not telling you this to forewarn you from ever going near the thing. Because when I began watching the pilot, I rather expected to end up disappointed if not outright hating the thing. What I got instead is a heaping bowl of recognition, with a side order of wait, are they going THERE? And yes, yes they did. As suggested by one of the promos you might or might not have seen, Perry's character really does stage a March Madness style head to head Pain Olympics tournament. No, really! What's even crazier, for me? It works.

If you know anything at all about the grieving me, you know that I hate Pain Olympics with a passion. In fact, I caught myself playing Reverse Pain Olympics. In the four plus years since I wrote that post, in this particular area of my world view, nothing changed. I still hate Pain Olympics, and I still think that nobody but each individual grieving person is allowed to say to themselves that it could have been worse. So how is it possible that given this world view, I am on board with the Go On's treatment of the subject?

I think that in a strange and completely unexpected way for me, what they do is actually affirming, not dismissive of each person's pain. First of all, they all agree. They all sign up, and they all accept the rules. Second, there seems to be an underlying and thick layer of good will. Those who fall in the earlier rounds are shown getting into the cheering on of their group mates. Even in "losing" a face-off, there can be recognition of the depth of pain. The character who is so distraught over the death of her partner that she can't pull out salient details to tell the story in brief to fit in the amount of time allotted is told that she is losing the bout "on technicality." That seems validating. And? they manage to do that without completely dismissing the dead pet character who "wins" on that selfsame technicality.

What was really profound to me, what sang to me with piercing clarity of a single string going on after all the rest of the instruments have faded, what I appreciated both as honest depiction and as a fearless move by the show's creators, were the brief vignettes of the characters in their own spaces, on their own time. I dare you to remain composed through the whole sequence, especially when they show us where the Pain Olympics winner's crown comes to rest. And may I remind you now that this is supposedly a half hour sitcom?  

So if, against my every intuition, this works on a sitcom, does it mean I just changed my mind about Pain Olympics in general? Does it mean I am about to offer sign ups for the blog cage tournament of doom? Hell, NO! What I now think is that the show creators have managed to find one of a fairly small set of circumstances where something like this might work. Which is why, I suppose, they are getting the big bucks.  I think that it works partially because the characters have suffered different losses, not all of them losses of people, and not even all of them losses of another being. As such, when they are showing off their wounds, they are presenting the general outlines of the wound, not measuring, if you will, the depth and circumference of the wound. In contrast, it seems to me that doing a thing like this in a community of people whose wounds are all the same general shape is a very bad idea. Mostly because comparing details of losses where the relationship between the lost and the bereaved is the same takes us perilously close to deciding whose lost loved one mattered more. And that is still something I can't abide.

The other reason why I think it works on the show, is that the "tournament" takes place within a defined period of time, in a small real-life community. In other words, it happens in defined space within a defined period of time. Live people interacting, in competitive spirit, yes, but also with compassion and humor and understanding, with other live people, most of whom they have known for some time. This is not something that is easy to ensure happening on the internet. People wonder by, reading the posts they stumble on. When we as readers react to an entry on a blog, something written in a particular time and influenced by particular events and emotions, perhaps even in response to particular events, for us what is said is very immediate, right now. But the person who said it may have changed their mind, may have even changed some as a person, and certainly may simply not be in a headspace to "go there," to engage the topic again. Which, if the post in question is of the Pain Olympics variety, might just leave a late comer reader feeling belittled in their loss instead of supported in good humor.

So I am still a firm "no" on unleashing Pain Olympics into the wild, but a cautious "yes, for now" on the new show. I hope, for their sake and for ours (because wouldn't it be nice to have a popular culture education on grief?) that they can sustain the tight-rope balancing act of being authentic and entertaining at the same time. And I really hope the weird guy's alone vignette doesn't mean he's a bereaved father. Not because we don't need to be represented, and not because bad things don't happen to weird people, but because if I had my druthers, I'd wish for us to be represented by someone painfully "normal" and average.

So what do you think? Have you seen the show? Will you? Are there other popular culture representations of grief in general or perinatal bereavement in particular that you find either particularly authentic or particularly offensively cartoonish?

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.