Loving and losing

The other day one of those supposedly inspirational quotes popped up on my Google+ page, among the many well and truly inspirational stories that populate it on the daily basis. The real inspirational stories are there because I am subscribed to a bunch of science-related feeds. Just recently, there was a story of recreating martian clouds in a giant lab structure on Earth, one about using a small 3D printer to print objects of any size through the use of an ingenious after-printing folding technology (no, really!), and one about a new discovery in astronomy that implies that life on planets outside the solar system is a lot more likely than we previously thought. Oh, and right above the inspirational quote, one about a possible vaccine against malaria. You know, malaria, disease that killed about 660 thousand people in 2010 alone, most of them children under 5 years old. Inspiring, no?-- to think that some day soon we may take that 660, 000 right down to 0.

And then there was the quote. Because for some reason Google likes to throw me those little nuggets of Hot on... Perhaps it is worried that I'd miss the really important stuff, what with my tragically unhip collection of subscriptions. Anyway, the quote. It was by a woman I haven't heard of before, though she is supposedly fairly well-known, Barbara De Angelis. "You never lose by loving. You always lose by holding back." it said, accompanied by a picture of an intertwined couple looking like clothes are about to start flying, if you know what I mean. 

It chafes me, the quote. At first I think it's the carefree couple in the illustration that is making the quote profoundly one-dimensional. And while it certainly does that, maybe that's not the whole story, since I can't seem to mentally walk away from this one-- the quote and the post keep bugging me. So I keep thinking about it. So maybe it's the absolutism of the quote itself, the lack of gray zones. Is it really true that you just can't lose by loving? What about an abused spouse-- shouldn't they be pulling back, walking away no matter if they still love their abuser? Or how about a teenage crush? Or, you know, those budding feelings at any age-- can you really never lose by plunging right in?

But eventually I realize that my internal issue is not about the intricacies of intimate relationships. It's about-- DUH-- me feeling like, again, the babylost, the childlost, the grieving, are cropped out of the conversation that is meant to be had. Our situations, our stories are not hallmarky enough for short quotes. Our stories illuminate what is, sometimes, really risked, by loving. Imagine for a second the same quote accompanying a picture of a small grave marker, a tiny coffin, or those impossibly small hand or footprints many of us have. Instead of wise, doesn't the quote suddenly sound cruel? Or, at least, impossibly sad?

Look, my personal blog's title, a quote from Sarah McLachlan, is the promise to not fear love. I think about that too, together with the quote, and wonder why the quote bothers me so much. And I come to think that perhaps it's because the quote makes it seem so plain and easy and obvious when it's none of those things. It's an impossible choice even when it feels like it's not a choice at all. We chose to try again, knowing what we can lose, again. Or we try again because not trying feels worse than trying, even knowing what we can lose, again. Or we chose to not try because we know what we could lose, again. Or the choice is made for us, and we are left to pick up the pieces. And no matter whether there's another round, no matter how the next round shakes out, a child, or children, we love is-- are-- still dead. We still love them, and they are still dead. And it's impossible for me to say that we haven't lost.

I've said for a long time, that I see grief as a mirror image of love. We grieve because we love them. We grieve because there's nothing else to do. So does it follow that if we didn't love them, or didn't love them as much, we wouldn't grieve (as much)? A friend has been known to occasionally pine for a lobotomy-- a way to forget the whole thing, pregnancy and on. I see the appeal, I do, though I can't, even this many years later, want it for myself. It used to drive me batty that nobody but us knew A, that he just doesn't matter to most people. It doesn't hurt as much anymore, this particular part, but I still can't wish for the memories to go-- it feels like wishing to diminish what little is left of him in this world. Of course, I realize that this is circular reasoning. It hurts me that he is invisible to most. With a hypothetical lobotomy I wouldn't remember, and so it wouldn't matter. I know, but I still can't wish for it.

All of this is theoretical, though. In this universe times moves in one direction, and sometime in our past, a child, or children, died. And now we are here, having loved them, still loving them. We are here and they are not, and we still love them, but have we not lost? Could we have avoided losing, or maybe lost less by holding back? Theoretical again, I know. Except our experiences inform our choices going forward. Which is why I called my blog what I did-- it was a note to self, writ large. I tried to be prudent, to hold back for a while, and I do think it helped keep me sane in the early months of the next pregnancy. But eventually I leaped. And I got lucky-- that son lived. He almost didn't, but he did.

I think this is why the quote bothers me so-- it makes a hard choice seem easy and it promises a reward that is nobody's to promise. Choosing to love is hard. And nobody, but nobody can say what will happen if you do. Choosing not to love, not loving, is often also hard. The choice takes your breath away. Sometimes, you make the choice despite yourself. Sometimes, you don't get one. Life is messy, and heartbreaking, and beautiful. And too complicated for simplistic prescriptions.

How do you feel about the quote? Do you agree with me or do you think I am overreacting? Or tell us about another quote that may seem innocuous to others, but bothered you because of your babylost experience. 

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?

The meaning of (a) life

The quote above is from the Jerusalem Talmud, section Sanhedrin 4:1 (22a), if we are being precise. It's Hebrew, so it's read right to left. The second part, one to the left of the coma, translates to "and whoever saves a life, it is considered as if he saved an entire world." If you've seen Schindler's List, you might recognize the quote as a less flowery translation of what was engraved on the ring that the Jews Oscar Schindler rescued made for him.

What's important to me, though, is that that part, the often-quoted part, is the second part of the sentence. The first part, and for some reason it seems important to me that between the two it comes first, translates to "[w]hoever destroys a soul, it is considered as if he destroyed an entire world."

Nobody is responsible for my son's death-- there was no humanly possible way to save him. But, yes, what was lost when he died, what we lost, is an entire world.

That's what we all lost, some several times over. Together-- galaxies, universes even. The mind boggles at the enormity.

In math infinity is not an easy concept to teach. Not necessarily because of the initial presentation, describing what infinity is, but because later it turns out that sets of things that you would intuitively expect to be of different sizes, even sets where you have an intuitive idea of which should be bigger, they turn out to all be of size infinity. For example, the size of the set of whole numbers is infinity. But, and this is intuitively non-obvious, the size of the set of odd numbers is also infinity. As, incidentally, is the size of the set of all numbers between 0 and 1. This is not a math lesson. It is a sort of a meditation on zooming back in, from the idea of the enormity of our collective losses put together to our individual losses, to each little life that did not get to be or did not get to be as long as we wished it to be. Each one a world. Still enormous, still mind-boggling.

Which is why, I think, looking for meaning in their deaths, looking for a reason, a higher purpose, whathaveyou, just doesn't sit right with me. What is lost is so profound, so shattering, that in my book  there is simply no reason good enough to justify it. There is nothing that can be put on the scales opposite the would-be world that is my son's life that would even it out. Nothing is worth it.

Once, almost by accident, I got to see an internal volunteer training manual of an extremely well-respected organization that works with bereaved parents. It had many good and compassionate rules, including one about not making yourself and your motivation for being there the focus point when interacting with bereaved parents because it should not be about anyone but the bereaved family. But then it also had a note from one of the founders of the organization, who is not a bereaved parent. In describing what led them to become a co-founder of the organization, the person talked about their very first interaction with a family that found out that their baby was about to die. It's a very moving story, and honestly I am deeply grateful that in that family's hour of need, this person was there for them. What did not sit well with me was the last part of the note. The gist of it is that when it was first happening, the future founder of the organization had a hard time dealing with the "why?" questions, but that now that they went on to found and build this organization, now they understand.

I remember feeling dumbfounded after reading this. I like the organization. I respect what they do. I think what they do is extremely important. But what the founder said struck me as remarkably self-absorbed. That someone would say that a person, a child, had to die to motivate and empower them, even if it is to help others whose children die, seemed to be to lack perspective, both in terms of what that death actually means (see: entire world, lost) and in terms of what seems like an extremely inflated sense of their own importance in the world. I mean, I can't imagine anything that I could possibly go on to do with my life that would be worth someone else's life, let alone a life so new that the outlines of the world lost as a result are barely perceptible through the fog.

I don't need to find a meaning in my son's death. Or, more precisely, I don't think there can be meaning grand enough to be worthy of him, to be worthy of the enormity of what it means to have to live without him.

To me, my son's death doesn't have to be beautiful and meaningful. It doesn't have to teach anyone anything, and it doesn't have to have changed our lives for the better. In fact, I think if someone tried to find anything of the sort in our story, I'd be beyond livid.

I remember a post on someone's blog from when I was only a couple of months out from A's death that has stayed with me throughout the years. The post was about how of course the deaths of our children are unfair, about how we, the survivors, didn't deserve it. There was a quote too, about how the only thing worse to imagine than their deaths being unfair and undeserved is for their deaths to have been fair and deserved. Jeez, right? What would you have to do to deserve to have your kid die? And if you put it that way... Well, the beauty and meaning thing, I feel similar about these-- what in the universe can possibly be worth my son's life? I have only one answer to that-- nothing, absofrigalutely nothing.

Which doesn't mean that I do not see beauty in our stories, in our story. The difference is that to me the beauty is internal.  It doesn't come from or depend on anything that happened as a result of A's death It's jagged and mangled, and may not look like beauty to anyone but us, and let's face it-- few are willing to look for long enough to see it. The beauty I see is in the origin of our pain, in why our worlds are torn and our hearts-- a mess of shards. That, of course, is grief, the new and unbidden roommate-inside-us.

To me, there is beauty in the pain, in the grief. But not because I enjoy the sight of blood and gore-- I don't. I see beauty in why the pain and the grief are there. They are there because we love our children. And when they die, when we lose the world that was to be them, the pain is the reflection, the mirror image of the love. And to me, that's good enough. Actually, to me that's the only way it can possibly be.

What about you-- do you need there to be meaning? Have you looked for it? Are you still looking? Has your answer changed over time? If yes, how? Why?

open letter

In late July, an email came into the contact form in the Glow in the Woods email inbox. I respond to those requests when we get them. It was from a woman who hadn't lost a child, but whose best friend had. She thanked Glow in the Woods for giving her a starting point in the piece How to Help a Friend through Babyloss—a section where we hope to guide friends in the right direction. (We urge you to add your own experiences with what was and wasn't helpful in the comment section of that post.) She asked if we knew any blogs for the friends of babylost parents, or if we could direct her for support. I suggested she post the question in the forum, and I posted the question on my social media sites. But the depth of compassion and love for her friend was so palpable. Conversely, the compassion and love this community showed her strengthened my conviction that conversations about friendships and child-death need to continue happening. 

She wrote again in December, thanking this community again, telling me where she and her friend found themselves now  in their grief and their lives. I found her insights so valuable, I asked her to consider writing a guest post for Glow. In the earliest months of Glow in the Woods, Julia's friend Aite shared her thoughts on abiding. Today, I am honored to share Rachael's open letter to Glow in the Woods. —Angie

Dear Glow in the Woods,

You don’t know me, but I feel as if I know you.  I have been a visitor, each and every day for the past seven months.  I have read your stories—every word.  I have followed those stories to your blogs to your spoken word videos.  I am a lurker, because I don’t exactly belong.  I am on the outskirts of this club, the one that you never wanted to join.  I don’t know yet if I am the only one.

I am here because seven months ago, my best friend gave birth to a beautiful, full-term baby girl who had mysteriously slipped away from life a few days before she was born.   

We had spent the weekend together, my friend and I.  I had invited her to spend a few days with me and I relished every moment of it.  We ate wonderful food, took dozens of pregnancy photos, listened to music, and reminisced.  We floated for nearly two hours in an outdoor pool and I cackled uproariously at the sight of her schlepping her pregnant body into an inner tube.  We sat in the warm July sunshine and excitedly discussed her impending motherhood.   It is hard to believe how quickly life can turn its back on you, how fast everything can change, how tragedy strikes in the blink of an eye.

The doctor said that the baby died sometime during that weekend.  I have drug myself to hell and back since the moment I heard the midwife say, tentatively, “Saturday, maybe.”  Why didn’t I ask her if the baby had been moving?  Why didn’t I put my hand to her belly, as I had done before?  Well, because I was having fun.  Because it wasn’t the last thing on my mind, it was something that had never been on my mind.  Because in the world I used to live in, babies didn’t die.  Oh, maybe in third world countries, or in cases of extreme prematurity, or later, to SIDS or something else, but not here, and not to my healthy, well-deserving friend and without any warning whatsoever.   

Like many of you, I have desperately wished for the impossible—the chance to rewind time.  I’m not asking to go back and retake a Biology exam that I wasn’t well prepared for.  I’m not asking to go back to my teenage years, when I made all of the wrong choices.  I’m asking to go back and try to save a life.  And not just any life—the life of a child.  This should be possible.  My dreams try to convince me that it is.  They play like a movie reel, where I am transported back to that weekend and I say, nonchalantly, “Hey, let’s go to the hospital and make sure everything is okay.”  Or maybe even further back than that.  To the day we spoke on the telephone and my friend told me that the baby had been quieter than usual.  To when I said, “Babies do that when they’re getting ready to be born.  It’s the calm before the storm!”  I laughed when I said it.  It was funny then.  It’s not funny now.  Not funny at all.  Allowing myself to go back and think of that conversation immediately brings forth a feeling of guilt that is so ferocious I can feel it stinging my throat, like bile.  It forces me to examine every moment of that weekend, to ask myself if anything I could have done or said would have produced a different outcome.  My mind refuses to stop multiplying and examining an infinite amount of scenarios.

And then, there was the morning that she called me, just twelve hours after I had dropped her off from our weekend together.  She was having contractions, but I didn’t believe it could be active labor just yet, and I was slow to get ready and drop off my children with my mother.  She arrived at the birth center and an examination revealed that she was seven centimeters dilated.  I did not make it to the birth center in time for her to hear the horrific news that there was no heartbeat.  She was completely alone.  The midwife had another laboring woman at the birth center, with no backup or assistance of any kind.  So as a result, my precious, heartbroken friend was left to labor through transition with the knowledge that her baby had died.  And she was all alone. 

Meanwhile, I was driving like a bat out of hell, selfishly hoping that her labor had slowed down just long enough to allow me to witness the birth.  A bright, sunny morning had transformed itself and as I drove, the clouds were darkening.  Sparse droplets of rain became a torrential downpour, the entire sky opening up to warn me of what was to come.  I didn’t see it then, refused to acknowledge that it could have been an omen.  And so, I arrived at the birth center, stupidly full of giddy excitement.  What transpired in the following hours all crowd together into one big, jumbled smorgasbord of shock, anger, fear, guilt guilt guilt, adrenaline, trauma, disbelief, empathy that became physically painful and so, so much sadness. 

The next morning I had to force myself to say goodbye, to my friend, and to the baby that she still held in her arms.  I was expected to resume life as normal, to come home to my four rambunctious boys and my schoolwork.  It didn’t happen to me, after all.  I could see it in the eyes of those who tried to comfort me.  They said, “Just be grateful for the children that you have,” which is a condolence that not only assumed I was ungrateful to begin with, but tried to diminish the grief and loss I felt for a child that I wanted and expected to be a part of my life.  I tried to sit with the boys and be present and shower them with love, but my mind was somewhere else, and their needs were too great.  Life itself felt surreal, a thick fog lining the edges as I walked aimlessly through the supermarket, lost.  I was consumed by grief, and by an insatiable need to fiercely protect and care for no one else but my friend.  It was here, on Glow, that I found solace, and how I discovered that my own words could bring healing as I filled up pages, previously blank. 

So now you know.  I am here.  Not with my own story, but as a keeper of someone else’s.  A story I cannot forget-- one that, at first, tried to destroy me.  A story that still begs to be heard, that unfolds each day and continues to reveal so much—about loss, about grief, about the power of friendship, and about healing.   And it is through your stories that I have learned how to be present for my friend, how to begin to understand just a sliver of her experience, how to nod at my own guilt and then let it slide on past, and how to allow myself to remember and love a little girl lost, one rainy day in July.

—Rachael

If you are here, feeling like a lurker, consider this post an invitation to introduce yourself. Whose story are you keeping? And for the babylost, how does it feel to read of the grief of a friend? Do you have a friend who keeps your baby's story? Someone who bears witness? How does that relationship feel? Has your child(ren)'s death brought you closer or pushed you away?

reflections: five voices from the family

This month on Glow in the Woods, we are examining family relationships--both our family of origin and the one we create on our life's journey. We want to look at how those relationships change after the death of our child(ren)--how they grow, how they suffer, how our parents and siblings grieve, and how they bear witness to our suffering. Today, we asked the family members of our regular contributors to talk about their grief, the death of their grandchildren, nephew, and niece, and the experience of bearing witness to our grief. We are honored to have them sharing their voices here.

jess' father, tauny.

Debbie and I knew her birth date in advance.  We had no hesitation in enjoying another day cycling in the Pyrenees with our friends, secure in the knowledge that the day was already special.  The route up Port de Bales was challenging, exhausting but exciting, all the more so because of the impending delivery which we chatted and laughed about with our other cycling friends – “How old are you, Granddad?”  “Come on Granddad, keep up” – the usual banter.  

At the end of the afternoon, we were about to head down to the evening meal with the group when the anticipated call came... and our lives changed irrevocably.  Debbie took the call from Jessica, expecting happiness but instead receiving the worst possible news from our distraught daughter – Iris was a stillbirth.  We were stunned.  Telling our friends, packing the bikes, hastily arranging flights back to the UK and driving into hospital was a soft, grey canvass smeared by a casual hand stroke.  Meeting Iris and sharing our grief with Jessica, her husband David and rest of the family will remain a jagged and sharply etched memory.

It was not the first time I had experienced severe illness in children, death in childhood, or even still births.  As a paediatrician of twenty-five years, I had “been there, done that” many times in the role of a caring but detached health professional.  My role was to diagnose and treat children, to alleviate suffering, to prevent the consequences of illness and to counsel affected families with warm, wise words.  I was told I was good at my job, and prided myself in my knowledge, my skill and my empathy.  

My experience was no preparation for dealing with Iris.  Intellectually, I could comprehend her death, but emotionally, as a father and grandfather, I was raw, blind and helpless. It was not possible to reconcile professional and family roles and the conflict was devastating.  Even now, several years and many distressing discussions later, there has been little resolution and thoughts of Iris jangle discordantly at work and at home.   

There is a little hole in our lives, and I can’t heal it.

catherine w.'s mother, cynthia.

The consultant who delivered the twins described the survivor as ‘an innocent bystander’, for although she was intimately bound up with her twin sister and with her underwent their extremely premature birth, she did not play an active part in the events preceding and following their birth. Held in her own membrane and nourished by her own placenta, she simply slipped out after her slightly larger sister and in turn was scooped up and cared for by professionals. And at once she was a ‘bystander’ no longer, for all passivity and inaction were gone as she in turn embarked on her struggle to survive.

The dictionary definition of the word ‘bystander’ is as follows: ‘A person who is standing by; a passive witness; a spectator.’  All of which shows what an odd sort of word it is, because what is being described is in effect someone who simply happens to be present, someone who is not a participant but could give an account of what they have seen, and someone who has stayed to look on. A number of other words, some pejorative, could be used to describe such a one, for what right thinking person would choose to be a bystander? In normal circumstances I would certainly not stand by. If I could be of no help, I would leave so that others could get on with doing what they need to. And yet, when my daughter’s twin girls were born, I could not tear myself away even though I could do nothing more than stand by, and be a passive witness, a spectator. Hard as it was to see our tiny grandchildren fighting to stay alive, I would not have been anywhere else, and painful as the whole experience was, it was also a privilege to witness their struggle. Twin 1, as she was styled by the hospital, lived for four days. She fought so hard and rallied time and again, exceeding expectation time and again. Knowing that she would be left with less and less each time she refused to submit, I could not find it in me to exhort her to fight harder or to hope that her life could be prolonged beyond what she could bear, certainly not for our sake, the sake of the living.  

She died in the afternoon, in the arms of her mother and with her father by her. Unable to hold her until there was no hope for her, they gently tended to their little girl until she died and then prepared her little body for the morgue. Her life was so short and yet complete. She was brave and dignified. She certainly taught me as much in the few hours I had with her as those who have shared many years with me. I am deeply grateful for her life and for the kindness and generosity of my daughter and her husband for allowing their respective birth families to ‘stand by’. We could do so little to help and I for one was keenly aware that I was very much on the outside looking in as I witnessed my daughter and her husband go through something I had never experienced with courage, fortitude and dignity.

chris' brothers, mark and michael.

mark.

I remember the day I drove home from work shouting and screaming with tears running down my face.  I remember the mad dash to get things in order and get down to Connecticut.  

A deep, profound sadness cut into me and spread like cancer the day Silas died.  I also remember seeing the small divide between my older brother me that had slowly transformed into a canyon as days and weeks turned into month and years start to diminish. The tragic event that transformed all of us also built an unbreakable bridge between two disconnected brothers. It draws us closer to each other every day.  

I'll never say anything good has come from all of this, but I will say ONE thing has changed for the better.

michael.

This horrific situation brought us closer together as brothers.  I stayed at the house for a couple weeks after the tragic event and although it was horrible to deal with such raw emotions, I knew I needed to be there. It reinforced how strong our brotherly bond truly was.  

Unfortunately, I have a lot of experience with difficult family situations having dealt with a mother battling MS my entire life.  It seemed very natural to just drop everything and be there in any and all ways I could for as long as I was needed.  As time passed, however, it became more difficult to know exactly how much support I should be giving and how much support my brother needed.  I tried to make sure I was there as a shoulder to lean on, but sometimes felt like maybe I was coming up short.  

As years passed, I was able to make some peace with the situation, but I knew those emotions were still very raw for my brother and sister-in-law.  It was very difficult to see my brother in such anguish and not be able to do anything to help him.  The only silver lining in this situation is that Silas has brought us closer together and has made me appreciate how great it is to have the brothers that I have.

angie's twin sister, kellyann.

I held on to my niece as I cried.  She was already asleep, and snoring in that way that little children do.  She just lost her sister, her “almost” twin, and she had no idea of what she has even lost.  This is not happening.  It’s a mistake.  Some stupid horrible mistake that we will never think is funny.  I walked down the stairs of my sister’s house, staring at their beautiful life; and then my eyes stopped at the Christmas tree.  This is a just a bad dream.  I’m going to wake up and it’ll all be gone.

People often ask me what it’s like to be a twin, which is a hard question to answer when it’s all you’ve ever been.  I can tell you that when I wake up in the morning she is the first person I call, and when I have news about anything, she is the first and sometimes only person I tell.  She celebrates with me when I am triumphant; she holds me when I am sad; and she tells me I am being an ass when I am being an ass.  My children call her their “other Mama”.  She brings me coffee, love, crafts, stories and joy in the middle of the afternoon for no reason at all.  She is quite simply my very best friend of thirty-seven years.

The next morning I arrived at the hospital, and quickly found my sister and her husband.  They looked tired, puffy-eyed, and both forced a smile.  I hugged them and cried, and my natural instinct to make sad people happy starting wrestling against my tears.  Wake up, Kelly.  Wake the hell up.  I still remember turning on the tv to some inane comedy thing just to help us forget where we were, why we were there and what this means for our family.

I not only lost a niece that day, but also my very best friend lost her daughter in the cruelest way I could imagine.  My niece lost her sister.  My children lost their cousin.  My mother and father lost their granddaughter.  My brother-in-law, who is like a brother, also lost his daughter.  My husband lost his niece.  And when she was born, she was perfect, beautiful.  She looked just like Snow White with her red lips and pale skin, dark hair and delicate features.  She looked just like we imagined.  

We.  It has always been the two of us.  It’s hard to always think of yourself as two sometimes.  Especially when the pain overwhelmed me.  Us.   And so in that way, I felt my uterus contracting as I watched my sister cry and labor Lucy in a darkened, nearly silent room, where the only sounds were her cries and our sniffles.  And for the months after Lucy’s birth and death, I felt my sister’s heartbreak in small and big ways whenever someone asked about the baby, whenever someone didn’t and even when she watched our girls play together.  I listened to her rage and her sadness and her guilt.  She said aloud the things I felt as I looked into her eyes, as I held her hands and drank coffee with her.  

My own grief was often pushed aside to sit with hers.  I think I swallowed it down so I could answer the questions when someone asked about Angie.  I still don’t resent it, if that is what you are wondering.  It helped me function.  I cried when I sat with her.  And watching her so open with her grief taught me so much.  That we all grieve in our own ways.  For me it was crying as I sewed, as I sang along to Nick Drake and washed the dishes, as I held my own children and let them ask me those painfully honest questions that only children can ask.  One of my sister’s favorite quotes is from some bicyclist that I can’t remember, but I do remember the quote.  “It doesn’t get easier, you just get faster.”  And I feel the same way with my grief, it doesn’t get easier, you just get better at dealing with it.

It took me months to accept that it had really happened.  I remember calling Angie and crying.  “I can’t believe this happened to us.”

“I know, sister, I know.”



If you are a family member to a grieving mother or father, what has your grief looked like? What is the experience of bearing witness to your child's or sister/brother's grief?

If your child or children have died, what was it like to bear witness to the grief of your immediate family? What do you think their grief experience was like? Did it draw you closer, or push you further apart?

courtesy, common?

I drive to work about the same time every day. Most of the time the soundtrack for that is news. I drive home at all different times, depending on how many students came by that day, what else I have on my plate, where else I have to be, and how soon. And so the soundtrack for the drive home is a mish-mash. Some days, it's mp3s of the stuff I downloaded over the weekend, some days-- CDs. But some days, depending on what I stumble upon when the car comes back to life, it's radio again.

And this is how sometime last week I was introduced to Philip Galanes, who, as I found out that day, writes the advice column Social Qs for the Sunday edition of NYTimes, and now has a book out by the same name. I started driving part way through his conversation with the Fresh Air host Terry Gross, and stayed on the channel. There was something very human and kind about Mr. Galanes, and it made me think that the program wouldn't be a bad thing to listen to all the way home.

They spent some time on peculiarities of the modern, technology-enabled world, touched upon dinner party etiquette, but by the time I was flying down the highway, the conversation turned very personal. First, about Mr. Galanes's childhood as a family "fixer," and then, tragically, to the death of Mr. Galanes's father, by his own hand. Deep, personal pain. Feeling responsible, as many suicide survivors do, but in his case because he was, you know, the family fixer. And, for years, not something he could talk about honestly. Eventually, he could.

So what do you think happens when someone answers a question about, say what his parents do by saying actually, my father committed suicide when I was 23?

"One of the shocking things about suicide too is that people feel very entitled to start asking really wildly inappropriate questions. Like the first thing generally people will say to you after you say that your father killed himself, is that they'll go oh, how did he do it? They might say oh, I'm sorry or oh, that must be terrible for you. Then they'll go how, how did he do it? And I don't know if that's some macabre thing coming up or what it is."

I wish I could say I was shocked. But I am not. Not even a little. The thing is, I learned, people feel very entitled to start asking really wildly inappropriate questions and to start dispensing really wildly inappropriate advice in all sorts of situations. Like, to take a completely random example, when you answer a question about children in a way that does not leave out your dead one(s).

What I did find a little surprising, what I am still mulling over, and why I am writing this now, is Mr. Galanes's response to the follow up question on what makes for an appropriate answer to a wildly inappropriate question like this. Because his response, and, perhaps more importantly, the spirit of his response, is much-much kinder than I am inclined to be to the wildly inappropriate. His response is meant not just for suicide survivors, but also for those encountering other kinds of drive-bys. A common ones, in his own description, are the various incarnations of the fertility-presuming questions aimed at quietly and desperately infertile. But there are also the ones aimed at conspicuously single, and, I imagine, many other kinds of vulnerable.

So in his own words: "I think the best response that I have been able to come up with is "Why do you ask?" Because it delivers the question back to someone in a way that lets them see it, hopefully, for how inappropriate and - I don't want to judge the people. [...] Most people are just thoughtless. They didn't mean to hurt your feelings. So by saying why do you ask, you give them an opportunity to really consider, wow, that really was pretty inappropriate."

And later: "But no, but you're quite right. There are lots of ways. It's also entirely appropriate to say gosh, I'd rather not discuss that. But I find the less that my response is like a slap across their face, the more I feel the possibility is for the two of us to go on and have a nice conversation that isn't going to be about how my dad killed himself or why."

And I think it is this presumptive kindness that really gets me. Because I certainly see what he is saying, but I can't say that I am fully on board. Or maybe I am not fully on board in case of the kind of loss common to us here. Because here's how I look at this. The person doing the asking, the wildly inappropriate one, is not the one who needs kindness. Or not the one who needs it more. The person whose heart is, again, ripped open by the question, that's the person in need of tenderness and kindness.

What I think Mr. Galanes is doing by committing to this kind of a soft and gentle mirror-holding, is accepting onto himself the extra responsibility for the feelings of the offender. I find the kindness of such an impulse commendable, but more than that, I find the imposition of it unfair. That is, I rebel against accepting his advice as the norm for myself or anyone else. The fine line I am willing to walk here is that I am ok with any individual who voluntarily decides to go that way, but I am firmly against deciding as a society that this should be the norm of behavior for the offended party in the conversation. Because see, this imposition of self-restraint then normalizes the wildly inappropriate, makes it an ok thing to ask, and assumes that the burden of not letting the conversation escalate rests on the already vulnerable.

I've said from almost the very beginning that I do not so much mind the random questions as I mind the clueless and hurtful reactions to my answers. It is the truth of our society that people ask personal questions, some of them shrouded in wording that implies judgement about your choices, and some of them worded entirely neutrally. So people ask. But I find it cowardly and unacceptable to only be prepared for the shiny happy answers. Mr. Galanes says that people blurt out stupid stuff because they are unprepared, because you in your answer have "just laid something unexpected down." It may be unexpected, but it is not outside the range of human experience. And that is what upsets me about the wildly inappropriate-- they are ready to carry on a long and fluffy conversation when your responses fit their expected pattern, but God forbid you should bring in a real painful truth and you can almost hear the circuits in their brains frying, resistors popping like popcorn.

Angry? Who, me? Actually, I prefer to think of it as indignant. I think the difference is that Mr. Golanes wants to fix things, and I want things to be fair. Not, you know, in the cosmic sense-- I know that's impossible, as attested to by the very need for this site to exist, by the abundance of the RE offices, and by the suicide survivor networks, just to name a few,--  but in an everyday sense. In the sense where the courtesy Mr. Golanes wants to show the wildly inappropriate, the courtesy he feels obligated to show them, I want them to feel obligated to show it to us. If the courtesy is to be common, I want it to be well and truly common.

To give Mr. Galanes his very deserved due, he doesn't call for the vulnerable to always show the soft spot. He himself lied for years about how his father died, trying on this illness and that. He appreciates that the vulnerable's need for safety, as his was during those years, and as the woman in the midst of a serious cancer relapse whom he very recently provided with a dispensation to lie until she's ready, that this need is more important that the other's need or want to know. But maybe there are some soft spots that burn more painfully when hidden. After all, when Mr. Galanes lied about how his father died nobody around was presuming that he didn't have a father or that he didn't love his father. In contrast, a desperately infertile woman, years into treatment, might want to expose her needle-poked flesh to wipe that smug smile off the face of the presumptuous fool who is going on about how she must enjoy the opportunity she has to sleep in on weekends. And a bereaved parent might, just might, want to point out that the hardest decision a parent has to make is really not the one about whether to spend the money on that expensive toy your kid really wants. I am just saying.

The thing is, I have, on occasion, myself used the relatively gentle "why do you ask?" And at other times, I have been far less kind. As I say above, it is the mandate of always picking choice (a) that I shirk. And maybe, as Mr. Golanes suggests, the difference is in whether I want to have the conversation continue peacefully or whether I want to explode the biggest bomb in the middle of the room. I don't like scenes. I do not enjoy scenes. And for certain I do not want to use my son as a weapon. But there are ways to be quietly dignified and yet to deliver a memorable punch. I reserve those mostly for repeat offenders, but I have delivered those too. The way I see it, the wildly inappropriate has already hurt me. How I react to it will not make the hurt less. But maybe, if I am memorable, it will make it less likely that the person will go on in the same vein. Maybe, just maybe, I will help spare another bereaved parent down the road the tender mercies of this particular wildly inappropriate person. Maybe.

So what are you-- a fixer, a justice-seeker, something entirely different? And where do you come down on this? How should we respond? How have you responded?