The Answer

The intersection of grief, creativity, and writing remains a place of such deep beauty and personal horror, I stand in awe of people getting their hands and souls dirty in it, exploring it with art, music, and writing. Kenny is a songwriter and musician from Bloomington, IN, whose band Gentleman Caller, has just released their fourth record, Wake (Mariel Recording Company). This record meditates on the loss of his daughter, Roxy Jean, who was stillborn at thirty-eight weeks on August 1, 2007. His music breaks me wide open in such an important way. I learn more about my own grief. Kenny agreed to join us at Glow as a regular contributor where he will be exploring his grief with his wise insights, brutal honesty, and dark humor, and of course through his music and words.  —Angie

In the year following Roxy’s death, I was just hunched, squinting and holding on.  I tried to outrun my thoughts, but they were in every hiding place I ran to.  I self-medicated with booze for a few weeks.  Became an expert on panic attacks. Sometimes I just waited, counting days away from the day she died. There was more comfort in math than hugs. I held on and flailed, as quietly as possible, inside my hollowed-out flesh-cage. I went to therapy, took anxiety meds and tried to get to know and understand my new, messed up self. 

During that god-forsaken year, 3 friends also died early, tragic deaths.  One by house fire.  One by drowning.  One by aneurysm.  All three under the age of 40. It seemed unreal and impossible at first… then, inevitable.  Remember, in The Empire Strikes Back, when Han Solo snaps “NEVER TELL ME THE ODDS!” before successfully flying through an asteroid field?  My life, the lives of my friends and family… ours had become the exact opposite of that.  We weren’t beating the odds, but being destroyed by them, and those odds were giggling.  

Hollowed out by losing my beautiful, dark-haired daughter, and managing my anxiety with medication (prescription and other), I was sliding down and increasingly absent of hope. I started recognizing patterns in the memorial services I was attending. The hollow, crying eyes of the mother, the trembling, shaking hand of the father, all while speakers talked about what the deceased loved, how they loved and who they were… and there was always a song. I was so embittered by all the loss, and death just seemed right around the corner for everyone I loved. I was certain I would not live to be an old man. I felt that no one I knew would. 

So, I decided to write my own funeral song.

I wanted a song that would just tell the bleak truths of my life… a song that wouldn’t put a bow on the end of my life, but a thudding and appropriate period. Somehow, it felt like the bravest thing I could do.

It happened immediately upon returning home after the last memorial service I would attend that year. It took literally the amount of time to write that it does to sing it. It remains, easily, the quickest I’ve ever written a song. It also remains the most cathartic:

THE ANSWER

I did not find the answer in church
I did not find the answer in church
I did not want a god that would not spare the rod
I did not find the answer in church
I did not find the answer in my home
I did not find the answer in my home
I was a stranger to my kin
I was a stranger to them
I did not find the answer in my home
I did not find the answer in school
I did not find the answer in school
I was sucker-punched and thin
I was not like the other kids
I did not find the answer in school
I did not find the answer at the bar
I did not find the answer at the bar
Beneath the stale embrace
I was always out of place
I did not find the answer at the bar
I did not find the answer in prescription drugs
I did not find the answer in prescription drugs
I took every pill they make
But I was still awake
I did not find the answer in prescription drugs
I did not find the answer in your eyes
I did not find the answer in your eyes
Not your hands and not your lips
We were always passing ships
I did not find the answer in your eyes

 What songs, if any, have been a comfort to you since your loss?  What songs can you no longer listen to? What would be your funeral song?

comfort

There are the nightmares. It had been so long. I almost forgot them. My children kidnapped, shot. I stand in front of the masked men, offer myself up, belly first, like a fertility sacrifice. I wake in a start. I tap into the collective consciousness, the collective anxiety. I tap into the anxiety that is always there. That anxiety resides right in my chest in the place where, when Lucia died, a dragon woke. He coughs little impotent puffs of smoke. 

You can never protect your babies. Not really, his raspy voice whispers. I will wake in you, breathe fire, swoop in low, carry them off. I will fight until your death for them, but only if I can see. So much I cannot see.

Vulnerability seeps out my pores. I dampen shirts with it. The dragon thinks there is real danger, so I dampen him too. I wrap my children in bubble wrap, place them on a low shelf. They tear through my packing tape, giggling and stir-crazy.

WE CAN'T SIT STILL, MAMAAAAAAAAAAA! WE WANT TO RUN!

They run wild, climb walls, jump and twirl and become trapeze artists, skydivers, lion tamers, lumberjacks. And they want to go to school. And I can only see them sitting there while madmen shoot into locked doors. They will always seek freedom and independence the more I seek isolation and protection. I know because I was once them.

Twenty children died on Friday in Connecticut. Another twenty-two children were attacked in China by a knife-wielding man. It happened in a primary school as well. None were killed. As the news came in on Friday, I sat in my daughter's elementary school auditorium, my cell phone video recorder pointed at the stage, watching class after class of children walk onto stage singing holiday songs. It was terrible knowing the news, but I hadn't heard any of the details. I could only think of how small each of them looked, even the big ones. So much smaller than I remember being. When I arrived home, I read that one full class at Sandy Hook had been massacred. I shudder. I visualize one whole class from my town. I just sat in front of six classes of students ages 5-10--their parents hopeful, proud, delighted, enchanted, trusting. It is too much to think about. I turn away, ashamed that I cannot stare at the grief, not completely at first. It takes me a few hours to turn fully toward the young lives, to read the names of the dead, to see their faces. And when I do, the grief steamrolls me, the anxiety overtakes me, the dragon wants blood.

photo by pirindao.

I face east, like Maoi, waiting for answers. The spring moves in, damp and alive, reminding me of tomorrow. I ask the dragon, but he's reeling too. "Nothing to be done," he grumbles. Then south, the deserts offer me a dry breeze, thorns and poison and the elements of survival. The west offers me a damp cloth, and a sip of tea. "Catch your breath, child. I have no answers either." Finally north. I plant my feet firmly on earth, bellow a guttural, throaty noise, more animal than human. The earth opens, slowly I sink until just my eyes stand above ground. No more questions. There are no answers in the snow and frost. Not in the cold. Not in the desert. Not in the sea. Not in the quarters, not in the elements. They understand nothing of humans. The murders are senseless.  I grapple with my footing again. Four years later. The silence cruel and unnerving.

You must look within, the wind creaks. You must look within. You must look for the place that weeps, the place that hides, and ask it to release you. You must answer the question yourself. You must face that grief, because it is another expression of love. There is great beauty in this world. Look at it longer than the murders. Look at the people holding one another. Look at them longer than the murderer.

I weep for the mothers and fathers, the siblings, the grandparents, for the humans who miss everything now, who have to rebuild themselves, who have to find a reason to get out of bed, who have to go through a first year, who have to come to December, like me, and mourn their children. I tear up thinking of the journey they will lead, the peace that will never come. My own loss seems so small, so meaningless. And that is okay. It is. But it was seismic to me, catastrophic even. 

Lucia is dead four years on Friday. All of these losses coexist and don't battle for dominance. My grief and their grief and the grief of a nation, the world. I have to sit with undeniable truths. In this world, babies die. Twenty innocent children die together in the place that everyone considered safest for them. All this mingles together, jumbles up, and I forget for whom I am mourning. And it doesn't matter. Perhaps I should have always been mourning for all the children who die before they've lived, who die by the hands of violence, who die by the random placement of umbilical cords in wombs, who die by knives on the other side of the world. And I was.

My husband and I held each other and cried. Blubbered, even. It has been a long time since we have done that. We talked about the school shootings. "I can't imagine losing a five year old. I couldn't handle it, Angie. I couldn't." 

I know. I couldn't either, except I would have to, and so would you. Because before she died, we said the same, and then we did.

There is nothing left of comfort. It is meaningless, and besides, we need something more than comfort. We need hope, a sheer idiotic belief in something. I take Mr. Roger's advice to look for the helpers, the assistants, the compassion, the grief, the expressions of love, the people throwing themselves in front of bullets, so children don't die. And I think of this babylost community, who holds each other in the face of grief, lights candles, abides when people no longer will. Compassion is all that is left of good.

Please use this space to share the ways in which the news of the murders in Connecticut have affected you, your family, and your grief. 

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.