circle time

It occurred to me later, like days later, that in that room we were the newbies. Going into the week of A's sixth anniversary on the Jewish calendar, and ten days short of the same date by Gregorian calendar, we were the newbies. Or, perhaps, in that room we were all veterans, and it didn't matter when exactly each of us started. Only it did, a little.

The woman who planned and organized the whole thing, that day she was ten years and a day on from the day her nine year old died in his sleep. To the right of her-- a woman whose 13 year old died close to 50 years ago. Two brain tumors in the room, a few cancers, three babies, a rocket, and a seven year old who ran onto the ice to try to save a dog. He didn't have boots. That was 40 plus years ago.

A Gathering to Remember, it was called. Our two rabbis and our cantor, he of the literally award-winning voice, closed the circle that otherwise contained bereaved parents, grandparents, and a sister. Each of us had the opportunity to speak in turn, though some chose to let their spouse do all the talking (like, ahem, a certain male of the species residing in my own house).

Because we sat down to the left of the organizer, we ended up being the last to speak. Which, I think, turned out to be a blessing of a sort. I wanted to be there, to sit in the room with these people, most of whom I didn't know before that day. But I didn't prepare anything specific to say, and I didn't bring anything ahead of time. I didn't even know what I would say beyond the crystallized truth of our existence-- my son died, I love him, I miss him, and somehow my crazy busy full and overflowing life is not complete without him. Ten seconds max. Had my turn been early on, that's probably all I would've had to say. Because, you know? As is, I spent most of the time listening. Parents and grandparents, 10 years out, 11, 50, 50 again, 15, 40-ish.

Before we started, a younger woman came up to one of the rabbis, saying she was just here to support "her," and that she'd sit in the corner. Oh, no, please sit with us, said the rabbi, my rabbi, who came to my hospital room and officiated at the funeral. "Her" turned out to be her mother, and the mother of that seven year old boy who ran onto the ice without his winter boots. When it came her turn to speak, the mother struggled, cried, pulled out the picture, and struggled some more. The daughter offered to speak in her stead, from a sibling's perspective, but the mother pushed through, and got her story out, disjointed in pieces, but she did it. The daughter got to speak too, showing us a scar that is her very own tangible reminder that her brother was actually here, and reminiscing about a family trip chock full of good memories that they got to take before her brother died.

Would I ever forget the date my son died? The day he was born? I'd think that I could never forget the date if I still had the mind to remember A at all (or, you know, anyone else-- my grandmother's dementia taunts me from afar as a pretty terrible way to go). But this boy's mother forgot. She said it happened in January. December, the daughter gently corrected. And yet she fought to be the one to tell his story. And yet, listening to her talk about it, that slip-up seemed so very minor. In fact, except for seeing an old woman in front of me, except for her telling us how long ago this all happened, from her voice, from the urgency in it, from the burning love and yearning, you'd think it just happened a year or two back.

When our turn came, I ended up thanking the group and talking about how it turns out I needed to hear them all. Because my ten second summary, it's all true. But so is the perception many of us share that the outside world is rather impatient with and rather forgetful of grief. And sometimes I start to wonder whether my own gut feeling, that this grief is not something I will ever forget or get over, but something I slowly get better at living with, whether this way of looking at things is not right, whether we should, at some point, just be fine already. I am, though. I am fine. And yet, I am also grieving. And listening to everyone in the group, everyone who is a bit ahead of us, and everyone who is waaaay ahead, in the end that felt like a permission slip-- yes, grief is like that, and it is ok to sit with it, now and whenever. Grief is like this because love is like this, and in the end it is still very simple-- we love them, and they are dead.

I finished by talking about the quote I noticed in the new High Holidays prayer book our synagogue started using recently. It was embedded in one of the notes in the margin that are on virtually every page of this very new prayer book, and it hit me so much that I had to come back later with my phone and take a picture of it. I've had the quote on my phone ever since I did that in September, and that morning I pulled out the phone and scrolled through the gallery back to the quote.

It is used in the book to argue that a certain passage should not be seen as a request for restoration of what once was, but rather as a plea for resilience. The quote is from Elie Wiesel, who really does know from resilience. "God gave Adam a secret--" he says, "and that secret was not how to begin, but how to begin again."

Do you ever feel self-conscious about your grief or its expression? Have you found fellowship with others in a different kind of a grief boat? Those on a different timeline? Have you had unexpectedly validating or unexpectedly invalidating grief experiences?

Mile markers

When I first went to see what would become Monkey's school, I was visibly pregnant, with A. At the open house I chatted with the then-head-of-school, partially about how she thought it was really nice to have a girl be older than a boy in a family because sometimes girls mistake their brothers' age-related competencies for gender-related ones and begin to believe they can't do things their brothers can. I hadn't thought about a dynamic like that before, but for some reason it stuck with me. A couple of months later, after we applied to the school, Monkey had her own interview there. By that point I was huuuuuuge and rather a slow-moving vehicle. I remember plopping down on the bench in the lobby, grateful for its existence, uncushioned hard surface and all.

That bench is still in the lobby, in that exact same place. But A is not. He was dead barely a week after that interview, more than five and a half years ago now.

Monkey loves her school. Not likes, loves. We love it too. And most of the time we are very happy with it, too. Most families at the school send all their kids there. Which, all of it, is making this a tough fall for me.

We have so many hopes and dreams for these little people. Some are general and vague, like that big one, that they be happy. Others are more concrete. We taught Monkey to swim and to ski, and I had some ideas that we would, some day, splash in the water together, A included, or race down black diamonds, me trying to keep up with the rest of them. Hazy, but not too hazy. No date and time certain, but I would've guessed something like that would be happening by the time A was five. There are no guarantees, of course. The boy could've broken a leg, ending a season before it began. He could've even, gasp, hated the whole exercise of skiing and refused to partake. Worse things, too, could've befallen him and us. But statistically those dreams are more likely to come true than not once you hear the heartbeat. And, you know, certainly by ten full weeks past viability.

And then comes The Day. The day their little hearts stop, the day we learn that we will not get to bring them home. All these dreams, visions, plans-- they all come tumbling down that day. We may be too shell-shocked to realize it right away. We all know the big one's gone. But it may take us some time to pick up the pieces of all these other dreams, to name them, and in naming them to mourn them. In that big pile of rubble it may be hard to find the individual pieces. It may be hard to tell whether the shard you are holding is from the play with cousins dream or the holidays at the grandparents' dream or even from the often underappreciated until it's out of one's grasp my family, all under one roof, fed and content dream.

Whether we choose to bag the whole pile and put it on the curb for the next garbage pickup, or to spend the time carefully looking through, from time to time, an errant glimpse of a shard or some semblance of it is likely to catch our eye and pierce our heart. I remember sometime during my first year, there was a post from a babylost blogger who was a good bit further into the process than me, about how she got stymied at a video store by a gaggle of teenage boys picking out a movie. Because suddenly, at that moment she knew with ridiculous clarity the many things, big and small, her son had missed out on because he died-- growing into a boy and then a teenager, and a young man, friends, messing around, movies. You can't plan for these. You might guess what landmine will get you one day-- I fully expect, for example, to some day fog up my ski goggles because of something that will inadvertently unearth a shard of that dream, but you don't know when or exactly how it will get you.

Then there are the perma-mines, the baked-in-the-cake grief mile markers. When we get up in the middle of the rubble, some of these are staring us right in the face-- you know, the family affair where you were supposed to show off the new addition; some are regular and predictable, clearly visible amongst the suddenly bare landscape-- the monthaversaries, the anniversaries, the hangings of the Christmas stockings, if that's your thing.  And then there are the one of markers-- the ones that were there from the beginning and never moved, even if they were, then, too far away to see.

I had a tough time coming up on the fourth anniversary. For some reason, four was shaping up to be qualitatively worse than three, and I was not doing well. The whole month was dreary and difficult, dragging and draining. It sucked, ok? And yet, in the middle of that slow dance of misery, in one bright moment of realization I knew that as bad as this buildup to four was, it was going to be a soft landing compared to what would have been A's first day of school. See, Monkey loves her school. We had decided she was going there before A died. Which means that unless something extraordinary would've happened between his birth and this fall, A would've started Kindergarten at the same school right after Labor Day, about five weeks ago now. In that very same moment of realization when I first saw the start of school marker staring me in the face, with 18 months or so still to go, I also knew, I just knew that on that day I would throw up.

Coming up on the school year I was a wreck. It didn't help that the Kindergarten class has three siblings of Monkey's classmates in it. It didn't help that I knew it would before Monkey ever started at the school, five plus years ago, thanks to the unthinking remarks from a mother of Monkey's then-future classmate. I didn't want to meet new families at the school-- the K class was oversubscribed, and I know that my head would keep reminding me that one of these families wouldn't have been at the school had A lived.

The first day of school came. We brought Monkey to the school, and we hung out, and I didn't throw up. I came close a couple of times, but I didn't. And now I think I wish I did. Maybe then I would be able to walk through the lower school and carry on a conversation at the same time. Maybe then I would not want to shut my eyes every time I see the K teachers lead their charges down the hall. Maybe then I would be done with this, the almost-final perma-mine.

This was the almost final "for sure" marker. I've hit a few of these before. From here on out, I think there is only one more, and the date is less than determined. Had A lived, sometime on or shortly after his 13th birthday, he would've had his Bar Mitzva. I know that will nail me too, probably at Monkey's ceremony first, and then on A's anniversary that year. And maybe a few more times for good measure.

Have you encountered any grief mile markers? Of what variety have they been and how has it gone for you? Are you from a family that celebrates Thanksgiving together every year? Or is it more that you have been stung by sudden recognition? If you can see a marker looming in the distance, how do you prepare? Or do you?

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?

Indelible

Who are we, now? Are we still ourselves, the people other people know, except, you know, grieving? Or are we changed forever, marked in a way that changes who we are fundamentally? Is there a middle path, a third option? I'd like to think there is, mostly because that is how I feel-- I am still me, but I am also marked.

I've often wanted to be marked in a physical sense too. To underscore, I guess. Sometimes also so that others could see-- though this desire is much less prominent these days, I've also from time to time wanted to make sure that others couldn't ignore my son. And a physical mark would probably make that somewhat harder to do. There are always the irreverent t-shirts, ones we've all fantasized about making and wearing. But fun as those would be, they are not permanent, and not exactly changes to our physical self.

This is likely why I am always at rapt attention when bereaved parents discuss their memorial tattoos. Some of these are true works of art, with layers of meaning and images in images. I wish I had the creativity to design something like this. But even then, I am so culturally conditioned not to get a tattoo myself (it's kind of a big Jewish deal, concentration camps and all) that I can't imagine breaking with that. So I admire the heartbreakingly beautiful work of others, and I think about how you really need to know the story already to see the entire story in the image. Which means that these are really for the parent, and not so much for the passers by.

So my body remains unchanged, except for what life does to it. And yet, I feel changed, I feel marked. I realize, too, that some of these changes are about my part of the story, and some are about A's, or rather about me reacting to his part. For example, the way pregnancy after is different, that's about me. That part is about what it feels like to be a mother whose child, whose baby, dies. And who then chooses to chance the fear and the anxiety and all the attendant crazy in hopes that another child might live.

On the other hand, the fact that I can't make myself fill out the part of my online profile with a cool local toy store that asks for children's birthdays because it numbers said children? That, I believe, is about him. It's about me knowing in my bones that he was here, and so I can't list the son who was born after him as "child 2." But at the same time I can't very well list the birthday of a dead kid under "child 2," not least of all because the store will then send me gift suggestions for him based on the age he should be for his birthday and various commonly celebrated holidays. And that? Might just break my heart.

So I am changed. But am I marked? Recently, I've come to believe that I am. Not in a way that others can see easily. The most striking of these little internal markings is the reaction I have to a very everyday thing-- supermarkets. Some of the food stores where I shop have flower sections right by the door. And I noticed that every time my eye falls on the fresh cut bounty, the first thought, and I mean the very first thought that enters my mind is essentially about which of the bunches on display I could take to the cemetery. This is more than five years later, so I think it's safe to say that this is not a passing thing. It is, in fact, so much a part of me now, so much not out of the ordinary for me, that it took me all this time just to notice. And I don't even go to the cemetery much now, so I think of choosing flowers much more than I actually do that.

When I did notice, it made me feel only a little sad. Mostly, mostly I think I was and am glad to have this. This change is no less indelible than the tattoo ink, even if less obvious to anyone else. In a weird way it's just nice to know that I carry my son with me all the time.

Are you marked? What are your markings and how do you feel about them? Are you glad to have them? Or would you rather not step on grief land mines as you navigate life?

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?