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?

Kindred Spirits?

A month or so ago, in the space of about 10 days, two women I know lost step-children to gun violence. In two completely separate instances (in two different states), two teenagers lost their lives in broad daylight for no other reason than being in "the wrong place at the wrong time."

When I say I know these women, I should clarify: I've never had either over for coffee. But I see one almost daily, weather permitting, and we chit chat about weather and kids and such; and the other I see in her professional setting when I happen to be there and we are on a hello basis. But it really doesn't matter how near or far I hold these women: children died.

I don't claim to know what it is they're going through -- I have no fucking idea. One woman I hugged, said I was sorry, asked if there was anything I could possibly do, asked to please express my condolences to her husband. I felt trite and superficial and wondered if I should have said something deeper and more meaningful. I wondered what on earth that something could be. For the other woman, I attended a memorial service for her daughter. I hugged her tightly twice, and told her as briefly as possible that I understood the very outer parameters of what she might be feeling, and could relate to much in the service. She said she'd like to call me.

These deaths have made me feel extremely small, and extremely . . . lucky. I at least got to set the terms of my daughter's death (to a degree), and she died in my arms.  She did not die violently, she likely felt no pain. I said what I needed to say to Maddy even if she likely heard not one word of it. She did not die in view of the world, in the headlines. These parents have none of that peace.

Since Maddy died, I feel a strange sort of connection to parents whose children die in war, or die in gun violence, or die in car crashes. Or jump off bridges, or accidentally step off cliffs, or fall victim to being on the wrong Duck Boat on the wrong afternoon in the middle of the Delaware River. Just this past weekend, the local headlines blared the death of a child in a house fire. We are not remotely the same these parents and I; I can't claim to have any idea what it is they might be feeling.

And yet. What used to be some otherworldly Shakespearean-type tragedy glimpsed peripherally between the day's political news and the comics now hits very close to home. I now stop to pour over these stories, and the language is so similar -- the grief so familiar in it's outline. These parents hang on to times and places. There was the man who kept his son's watch set to Iraq time. Time. That bastard. It doesn't stop for us. It keeps going. Even where your child fell for the last time. The mom who sat in a lawn chair, simply being in the presence of a cold piece of granite bearing her child's name. Parents who try desperately to have something positive come out of their most horrific experience through scholarship funds and concerts and road races. The pictures, the shrines, the tears.

I don't know. I can't possibly. And yet once, while listening to a program about mothers of fallen soldiers who congregate at Arlington cemetery, I had to fight every fiber in my being not to whip my car in a U-Turn, hop on 95, and drive three hours to see if they were there.

As a historian who spent a fair amount of time studying war, I've always felt I at least understood Memorial Day and observed it to the best of my ability. I realized after Maddy died that I didn't have a fucking clue. Three Memorial Days ago, the remembrances in the paper and solemnly on my radio -- that I absorbed on my way to a family picnic -- broke me in two. I asked my husband, who was driving, if he felt like continuing on the road to a small Pennsylvania town where the son of the man speaking on our radio was buried. He said he did, but we had another commitment. We did decide that we both needed to do something more on this day, now that we at the very least could hear what people were saying.

We have yet to formalize our observance in any significant way. But this holiday now strikes perilously close to home for the both of us. We do spend time thinking of it's meaning. And all of the parents who who received the worst possible news and then spent the remainder of their lives tending gravestones instead of grandchildren.

I'm loathe to call such new awareness a "gift" because Maddy's death was simply a tragedy and I've come to decide I don't need to peel any good away from it unless it beats me on the head. I certainly don't need to look for it in order to understand it. But it left me with a new frame of reference, a new vocabulary, new metaphors, fluent in a language that I now recognize instantly. Because I may not know what they're going through at all, but I understand what they're saying. About missing, and promise, and a future without. About having a child permanently frozen in time as a child, never to progress.  About mourning dreams. About having to move through time (that bastard!) while the milestones rain down like an avalanche of boulders.

In the memorial service I attended for the young woman, people spoke about continuing the speak the child's name, associating her death now and forever with a season (Fall), and not wanting to find joy in what was left, but simply wanting her. I have never been good at languages, finding all the rules too easily malleable and forgetful. Here, for perhaps the one time in my life, I felt I grasped everything said while everyone else sat rather uneasily, shifting in their seats, trying to comprehend the sounds and locate sympathetic similes within their life stories.  I got it all.

And yet, I have absolutely no idea.

I just felt horribly sorry for the parents, and wondered what on earth one said to another at a time like this.

How do you feel when you encounter other parents -- either in person or via the news -- whose older children have died? How has it made you feel about your own grief and circumstances? Do you find their situations -- with children older than babies dying by means other than usually discussed here -- completely foreign or somewhat comprehensible? Do you feel a strange camaraderie with these parents, or do their vastly different circumstances leave you fumbling for words and feelings? (Is it possible to feel so similar, and yet so wildly removed?)

FAIL

This has been a hard post to write. I've carried it around for weeks now, turning every which way, thinking of how to start, how much to say, what to call the thing. The title didn't materialize until last night, and when it did, it wanted to be "Deadbaby FAIL." Which, really, is ridiculous. Because isn't having one of your babies be dead a big fat FAIL all by itself?

And yet, here it is, the topic that's been messing with my head ever since I heard that the nice lady rabbi, the one who came to the hospital the morning I was in labor with A, the one who officiated at his funeral, the one who then officiated so very graciously at the Cub's bris, is pregnant. It's not really about her being pregnant-- I sincerely wish her nothing but safe and easy pregnancy and delivery (which, man-- she's going to lead High Holidays services at 7 months plus, so the easy part is not bloody likely). What it is about is that in a class the rabbi is teaching for new parents and parents-to-be, she said they are not telling anyone, including their children, the sex of the baby she is carrying because they realize that it doesn't always end well, this pregnancy business, and this is the way they are trying to soften the would-be blow for the kids, by limiting how much they would bond with the baby prior to birth.

My first reaction to hearing this was the nearly instantaneous appearance of a big giant head of steam. It has since chilled into a not exactly set in stone decision to go talk to her, to gently caution her that this not bonding through not revealing the sex thing might not work all that well. Not that I want her to ever find out. Or think that she is likely to. But she's talking to people in a class setting, and it's possible that someone some time might find out.

I've also been thinking about whence came my head of steam in world record time. Seems I am not the sharpest tool in the deadbaby box, 'cause it took me a little while to figure out the steam was really about what I now believe to have been my, ours biggest FAIL in the wake of A dying.

Coming up on the two year anniversary, I was obsessed with pictures, with having taken too few, with them being of what I will generously call below average quality. The whole thing was spurred on to some degree by how many pictures of the then-four-months-old Cub I had by then on my computer-- hundreds and hundreds. I had to remind myself, more than once, that no, I couldn't have had my digital SLR at the hospital to take the pictures of A with because-- duh-- we didn't get the digital SLR until nearly a year later. Duh indeed.

And then, not six months later, my daughter taught me what the real FAIL of those days was.

Monkey wasn't even five when A died-- five and a half weeks short of five, to be exact. I know because his due date was the day after her birthday, so yeah, I know. She loved him fully and without reservations. She loved him from the second she asked if there was someone living in my belly, and I said yes, from before we knew he was a he. If I am entirely honest, she probably loved him from before she knew he existed, so much did she want a sibling. A sister, preferably. Which she admitted, honestly, after the sonographer said "it's a boy"-- "I wanted a sister," she said. But barely ten minutes later, coming out into the lobby, she was all about her brother in there.

But she was so little, so very little. And so we didn't bring her to the hospital. In fact, we didn't tell her until we got home because we didn't want it to be anyone but us telling her. And then we made the decision to not take her to the funeral. It was a selfish decision, in that it allowed us to focus entirely on ourselves and our own grief on that day, instead of having to help her navigate hers. But to be honest, there was also a lot of pressure to not take her from my mother in law.

We showed her the pictures when she asked for them, and we still do, when she asks. We took her to the cemetery later, and we still take her when she asks. But she never had the tangible experience of holding his physical body, or seeing the casket-- of having a physical object into which to pour her enormous love. And last summer, slightly less than a year ago, it all came crushing down with an enormous meltdown. An epic meltdown, with sobbing and crying, and the talk of how she wishes we didn't have to bury A, of how she wishes she could've gotten to hold him and then bring him home, so she could keep holding him. We got through it, somehow. Though even now, when I think back on it, my heart hurts and beats faster, and there is a knot in my throat, and another in my gut.

So there it is-- my biggest deadbaby FAIL. Also, probably, my biggest parenting FAIL to date. I don't feel guilty about it-- it was the decision we made at the time, with what we had to work with, with what we knew, with who we thought we all were then. But I do feel sad about it, deeply, deeply sad. And what I want to say to the lovely lady rabbi is that while everyone's mileage may vary, when it comes to dead babies, less is definitely less, and one day a bereaved sibling may decide that it was just too little.

What are your regrets about events and decisions you made in the aftermath of your baby's death? Are there are people in your life who wish to have been more involved? Less? How do you feel about it all? 

reflections on baby photos: three voices

1 :::

Several weeks after Sadie died my sister-in-law had the first picture we took of her painted on canvas for us. It is a beautiful shot taken as I held her for the first time, all chubby cheeks and serene newness.

It has been a focal point sitting on our bedroom mantle ever since. Most mornings I send a quick I love you, Munchie towards it before heading off to work. There have been times that I’ve sat on my bed in front of it, sobbing under the weight of how much I miss her.

My brother took my second favorite photo. In it Sadie is sleeping in her father’s arms. The pose of her tiny little fist curled up under her chin like a miniature, tired old man makes me smile. I’d probably have a wall-sized mural of it instead if I didn’t think it’d have every guest running for the hills, calling me a whacko over their shoulder as they went.

The honest truth is that I struggle between that sentiment and a lingering guilt over not having enough of them up.

The strength of our love for her merits having her image splayed across every surface we own. So why the hell should I worry about whether or not it makes our dinner guests fidget in their seats?

We probably took several hundred photos of Sadie over the course of her six weeks with us. At any point I can open those files and look back for as long or as little that I care to. They allow me to remember every curve of her perfect face. The video clips remind me of how hilarious we found it when she grunted her way through a poop. They allow me to grieve as and when I choose.

These images we keep tell our heartbreaking truth: that along with our memories, they are all we have left.

~ Jen

2 :::

Our only pictures of Silas are from when he was still in Lu's womb, and after he had passed away. His presence was too brief and traumatic to capture while he was alive. 

It is almost impossible for me to look at photos of Lu while pregnant, but I need to see his beautiful and serene face in the collage Lu created in the months after he left us. In it he is newborn and perfect, a gorgeous little kid. The photo was taken by the hospital staff and given to us in a box along with imprints of his hands and feet in clay and in ink, a lock of his hair, the tiny hat he wore at the hospital and several other beautiful photographs of him.

There is absolutely no question that this collage or a photograph of Silas will always be displayed in our house. He was our child and although we did not get to have him long, the physical presence of his life and existence is vitally important to us. Frankly, I've never for a moment considered any other arrangement, or even if having his photo displayed would make guests feel uncomfortable.

Just the idea that someone would want for us to do this differently to make them feel better makes me extremely upset.

It is our choice to remember our son openly and honestly in our home. If any friend or family had any other opinion they would be well served to keep that entirely to themselves. It is up to them to deal with their own inability to face reality and not at all my problem.

In the framed collage Lu created is his photo, the ink imprints of his hands and feet, a haiku I wrote about missing him, a photograph of his name written in the sand on the beach at sunset, photographs of the tattoos Lu and I both have in his honor, and a small print of the constellation Orion, his middle name. It is not nearly enough or anywhere what we deserve but it is what we have, and somehow, it will have to do.

~ Chris

3 :::

What I think about displaying pictures of dead babies in one's house is that no-one but the parents gets to have an opinion on this. A picture, bazzillion pictures, where, how-- none of this is up for discussion. Anyone who doesn't like what the parents do is welcome, and is hereby courteously invited, to shut the fuck up. People's homes, coincidentally much like their grief, are theirs. Both are about them and their family, not about anyone else's idea of what's done or what's proper. Even when an anyone else in question is a close friend or relative. Particularly when it's a close friend or relative.

You'd think that with attitude like that I'd have at least a couple pictures of A up around here. But we have none. Back then my hospital didn't offer contact information for NILMDTS photographers. Even if they did, I don't think at the time we would've been comfortable letting a stranger into that room. Scratch that-- I know I wasn't. It bugs me now, because now I would be. And because what we ended up with are the few pictures my sister took with my blackberry. The quality isn't great. It's not awful either, but it's not great.

I've edited some of the pictures we have, cropped, played with effects. Over the years, I posted two of these edited photographs on my blog. I have all of them, original set and my edits, on my laptop. I can look whenever I want to.

There were stretches of time when I looked every day, sometimes several times a day. But there have also been stretches of months when I haven't looked at all. Not because I "moved on" or any such platitude. I think of A every day, I miss him all the time. But I don't need to see the pictures all the time.

All of these things are true, but none of them are the real reason we don't have the pictures up. The real reason is that parents is plural. There's two of us in this, and JD didn't want the images displayed. He doesn't usually look at them either. He doesn't need to. Not to remember, not to love, not to grieve, and not to miss. I think, truthfully, that in the photographs JD sees too much of his own pain, that the pain he sees clouds the beautiful baby whose pictures those are. I think he sees more clearly in his mind's eye.

And so we don't have any photographs up. What we do have are the two framed drawings of Monkey's, family portraits both. One she started while A was still alive, all of us lined up in front of our house, A with a hypothetical future dog. She had done the outlines in pencil and had started on coloring it in with markers before A died. In the days following our return from the hospital, cleaning her room with her, we stumbled upon the drawing. I asked if I could have it, and she said no-- she would finish it and we would hang it on the wall, for everyone. Finishing the drawing was hard on her. It took her weeks, and in the end some of the coloring is sloppy, too sloppy for what she was normally doing back then, and in darker colors than her usual palette.

The second is the portrait she did in art class last year. It's in paint and is fairly impressive artistically, for a seven year old. As in, for example, people have recognizable features. There are two small boys in that one. Nearly identical, with one slightly larger than the other. She proclaimed the larger one to be A, and the smaller (duh!) the Cub. The boys in the painting are holding hands.

So this is the idiosyncratic place our little family finds itself on the pictures thing.  But like much else in this whole babylost experience, it is not etched in stone. A's actual photograph might still end up on a wall in our home. For a while now I have been thinking about creating a collage type arrangement in one frame, floating or otherwise, with pictures of all three of my kids. I think I want to have something of all of them together, since, you know, I can't have all of them together. I am not sure when I'd do it, or how, yet. I was thinking of using the picture of A's hand in mine, but I am not sure what pictures of Monkey and the Cub to use with that. So it might end up being a picture where you can see A's beautiful little face, or maybe both. See how figured out I am?

And if I do manage to make something that I like, I don't know where I would want to put it. In my office, where most wouldn't see it, or somewhere more conspicuous? It depends. Depends on what it comes out looking like-- too tender and intimate to share with just anyone or something I am ok with people seeing? And depends, of course, on how JD will feel about it. I guess, again like so much in this strange world of ours, we will figure it out when (if) we get there.

~ Julia

How do you feel about displaying photos of your baby in your home or in other personal spaces? If you've chosen to feature them in your life, how have your photos been met by loved ones and friends? What do photographs of your child mean to you?

Random walk

Why are we here? All of us, I mean, humanity? Philosophers have been at this for millennia. So have uncounted and uncountable others. What we call regular people. Happy, unhappy, kind, lonely, content, brilliant, sad, successful, lovely, mean-- all kinds of people.

I found my answer long ago. I would like to say that I found it in my freshman biology class, but I would probably be lying. I certainly met the concept there, but it wasn't until a few years later, when my work in the lab required me to consider its moving parts, or maybe not even fully until I started teaching, that the idea blossomed and made itself a home right in the center of my brain. It wasn't a particularly painful process, as major mental model reconstruction projects sometimes tend to be-- I must've been ready for it, ready for this unifying idea to bring together life and science. And even still I find this understanding, this answer to be both astonishingly simple and just a little bit subversive. Not in the sense that it challenges rules and order, but in the sense that it comes back to shift the question itself.

This. This sea green thing is my answer. A molecule, or, rather, a type of molecule. DNA Polymerase-- an enzyme, an incredible, precise machine, modeled here hard at work. What DNA Polymerase does is replicate (copy) DNA (there is a bunch of related molecules in the cell performing various components of this function, from straight up copying, to fixing particular types of errors that occur due to impact of specific elements of the environment, like for example UV rays from the sun; but since they all share the central feature I am talking about, I am going to talk about it here as if it's all one molecule). In the picture, DNA is the tightly wound thing in coral tones. In reality, it's the sourse of heritable information in the cell. In (almost) every cell in our bodies. In every living organism on Earth. (Viruses don't count-- they are not technically alive, since they need a host to proliferate. Viruses carry their genetic information either in DNA or in RNA, a closely related and most likely older molecule.)

To make a new cell, whether to grow and develop, heal a wound, or create a gamete for procreation, we need to replicate our DNA. Cells, you see, come from other cells. And the way they do it, roughly, is to copy DNA, segreagate it evenly to the future daughter cells, and pinch off the membrane in the middle to make two from one.

DNA is a double stranded molecule. But the beauty is that the information on how to make each strand is stored right in its partner strand. So if you separate the two (and there are enzymes to do that part as well), you can create two copies of the original by following the instructions in each of the single strands. Which is what DNA Polymerase, that sea green thing in the figure, is doing. You can see the single strand being single in brighter pinkish tones towards the top of the figure, continuing in the same color towards the bottom. But you can also see the new strand that the polymerase is making in duller orangish tones below the position where the polymerase is holding onto the strand the closest.

One last bit of science before I get to my point. The information on how to make the new strand is stored in the old strand very locally-- for each position polymerase is to fill in, the information on what piece needs to be put in is stored right across, in the corresponding postion on the old strand. This means that if it accidentally inserts a wrong piece, it should be able to sense it, delete it (via a different part of the molecule than the one that puts the pieces in), and try again. This is one of the mechanisms that makes the machine so accurate.

So here's the thing. DNA Polymerase is very very very accurate. Mindblowingly accurate. But it does make mistakes. Like once in a blue moon. But, our genome is about one third of a blue moon long. So it makes a mistake about every other time a cell's genome is replicated (because it makes two copies every time it replicates one cell's genome-- a new strand for each of the old strands).

These mistakes are not necessarily bad things. Sure, some of them cause cancer and other diseases, and some cause miscarriage. But a lot of them are entirely harmless, occuring in a region that doesn't seem to have a function, or changing only the way the instruction is written in the DNA, and not the instruction itself. And some of them are actually beneficial.

In fact, my answer to that first question, the reason we are here at all is "because of that very low rate of errors of DNA Polymerase."

For example, a long time ago there was no oxygen in Earth's atmosphere. Mostly sulfur. So first, due to some of these errors (and maybe other genome-changing variations, such as copy/paste of whole sections), some bacteria developed a system to use the energy from the sun to change carbon into the form that can be used for growth, using a sulfur compound to make the system go. Later, another bunch of copying errors allowed some bacteria to start using water instead of the sulfur compound in that system. That process produced oxygen. And since water was even more abundant than the sulfur compound, slowly, very slowly, the oxygen-making organisms occupied more and more space, making more and more oxygen, eventually changing our atmosphere into what it is today.

Many-many other changes occurred through the billions of years Earth has been around, both before and after the events I described above. Diversity of organisms populating the planet today, diversity within organisms, difference in the types of organisms living in one type of environment versus the other-- ultimately all of this is down to DNA Polymerase making those very few mistakes every couple of blue moons. If it wasn't for it making mistakes, there would be no humanity. To be fair, there might not even have been yeast. But very definitely no humanity.

And this is where I jump to the dead baby thing. Because while some of these errors allow new traits and whole new species to emerge, some of them cause miscarriage. Some of them cause birth defects, some extremely challenging and some fatal. This is why I am so very comfortable saying that there is no reason for why my baby died. It was random, shitty piece of luck. I don't know whether the particular things ruled to be the cause of his death were due to the actions of DNA Polymerase, some other part of cellular machinery, or environment interacting with otherwise ok parts of his or my biology that caused it, and in this sense it doesn't matter to me.

This is why I never ask "why us?" The scientific answer to "why us?" is, I know, "because of random events that occurred sometime during gamete production, fertilization, implantation, or development." The answer to "why me?" (if someone asks me to differentiate that from the "why us?" question) is "because he died, and I am his mother."

My philosophical/religious answer is also grounded in this scientific reality. "Why not us?" is that answer. Why should we be exempt from the luck of genetic, developmental, or environmental draw? I just can't see a Higher Being intervening in cellular processes. When my rabbi tried to say something about God calling A home for God's own reasons, I asked her not to say that again. Followed by "if God interferes in DNA replication or chromosome segregation, God needs a hobby."

Though this measured and cerebral part is not all of my answer, it is a lot of it. But there is also an incredibly strong emotional part. So strong in fact, that this is one of the extremely few topics associated with bereavement that is guaranteed to raise my blood pressure. (Not in the bereavement police kind of way, where I wish for everyone to share my perception-- I strongly believe in to each her own. But in the don't tell me how to see this kind of way, where I react strongly to anyone implying that the existence of reasons is an undisputed point of agreement among the bereaved, even if one doesn't know what those reasons are in each particular case.)

I could hardly talk to my mother about A's death for months after because she would inevitably end up at "why us?" again. When I finally turned on her to ask why the hell not us, she had nothing coherent. "Because we are such a good close family" is what she came up with. I laughed a long bitter laugh before asking her to please tell me what kind of a family did deserve to have a child die.

When Monkey was born, conceived after more than two years of trying, and after an early miscarriage, I decided that it is impossible to do anything to deserve having a baby. The happiness brought into our lives by finally getting a chance to love and care for and watch grow this tiny being, it was overwhelming. If you asked me then, I probably would've come up with the inverse, that there is nothing (or nearly nothing) one can do to deserve to have their child die. As is, I don't remember actually articulating this last part until after A's death.

Either way, that's where I am-- it's impossible to deserve to have a healthy child, and it's impossible to deserve to have your child die. And, to me, there is no reason. There is no reason good enough for a Higher Being to take your child. And any Higher Being who would disagree is not a Higher Being I want to have anything to do with.

And my final point. Human beings want explanations. And when we don't have them, we make them up. One thing we tend to do a lot is look at a sequence of events, like X happened, and then Y happened, and turn it into X had to happen so that Y could happen, an explanation. And sometimes, if you control for all other moving parts in the system, it is even true. But most of the time it's nothing but a logical fallacy. So I differentiate the things we do after our children die from anything having to do with a reason for why our children had to die. I see what we do after as things we do to learn to live with our tragedies or as we learn to live with our tragedies. Some of these things may be healing, some may be revolutionary and helpful to countless others, and many (most?) are just things we do to get through the days. But to me, none of these things are a good reason. To me, none of them are worth a baby's life.

The way I see it is we move forward because we have to. Putting one foot in front of the other. And sometimes what we do with the shitty hand we are dealt is incredible. Sometimes what we become in the aftermath is stronger and more beautiful than before. But to me, it's not a reason. And not an obligation, either. Just surviving is amazing. Early on, eating and doing laundry, and occasionally showering. Later, engaging in community, real life or virtual, caring about one's job, about politics, books, crafts, anything really. It's all amazing. And, to me, none of it an answer to "why us?"

Do you have bereavement-related topics that get you hot under the collar? For example, how do you feel about the "why us/me?" questions? Are your philosophical or religious answers influenced by your life experiences and perceptions and/or by your professional knowledge?

a great and noble life

I sit in the sanctuary. It is Yom Kippur, the holiest day of the year on the Jewish calendar. The year when even the least observant Jew can be seen in a synagogue.

I am not the least observant Jew… Not really possible with a husband who is studying to become a rabbi. Not really possible with the amount of Jewish tradition I was raised with. Not really possible with Polish grandparents who survived the Holocaust. Not really possible with the number of Jewish food calories I have consumed in 38 years.

And yet it is still somewhat a surprise to me that I am there, in this synagogue, following along with this kind of service. It is a traditional Reform Jewish service. The prayer book – Gates of Repentance, special for this day of atonement – talks of

God as Lord,

God as male,

God as judging,

God as forgiving.

I can’t quite bring myself to recite along during the call and response. I can’t bring myself to say, God, oh Lord… out loud.

This is not how I relate to God, to Source, to all that is around and within me. This is not how I connect to my divine essence. Not in this language.

My “God” is not separate from me.

My “God” is not in charge, deciding what I will receive and what will be taken away, when I will struggle and when I will overcome.

My “God” does not judge or punish me.

My “God” does not care whether I fast on Yom Kippur, or that my fast today included drinks of water and kombucha, that my day of atonement included a trip to Whole Foods and time sitting on my couch writing in my journal and reading a (non-Jewish) book.

Then I find this in the prayer book during the afternoon service: 

This is the vision of a great and noble life:

To endure ambiguity and to make light shine through it;

To stand fast in uncertainty;

To prove capable of unlimited love and hope.

And it resonates inside.

Hmm… A great and noble life as one that is lived as well as possible in spite of its precariousness, in spite of our fragility. Amid the fuzzy blurred boundaries that keep changing on us without warning, and rugs that are pulled out suddenly from underneath us.

I have proven capable of unlimited love and hope. Each day I surprise myself that I continue to feel it even more. In spite of the uncertainty that comes with knowing that things can completely fall apart and come crashing down again and again.

I never before thought of my ability to bounce back as being a quality of a great and noble life. I never before related to survival that way. Yet survival is what it is, isn’t it? Isn’t that what I’ve been doing? Surviving? 

Or perhaps I have actually… been… thriving…?

***

It is later in the afternoon and the yizkor memorial service has begun. The mood is quiet and solemn and the passage is about our finiteness, words about being on the road towards death from the moment we are born. (I close off some when I hear the words birth and death in the same sentence.) Again I start leafing through the prayer book, unsatisfied with the gloom and doom.

I find this: 

May the pains of past bereavements grow more gentle;

Indeed, let them be transformed into gratitude to our dear ones who have died

And tenderness to those who are still with us.

I was so lost at this time last year. I was so angry… at everything and everyone. I cried through the entire day at our warm and wonderful Renewal congregation in Berkeley, surrounded by friends who were there at every turn to hug me and sit with me or leave me alone outside if I needed that. I didn’t fast. I felt no obligation, no inspiration.

I felt no connection to this day, so soon after Tikva had died. All I could do was picture her spinning in circles in a white dress, dancing to the music, a year later. The two of us together in a parallel universe where she had continued to live.

All I could do was cry an endless stream of angry lost tears.

Now, a year later, the pain has grown more gentle. I think of Tikva with gratitude for the gifts of hope and love she gave me, for the compassion space she cracked open and expanded within me. For asking me to love her in a way I had never before known I could love, for teaching me that hope never completely goes away, even when everything feels lost

Or finite.

And I think of Dahlia, who daily stretches my capacity for patience, who demands my presence, my tenderness like no one else can, who reminds me to laugh in my most frustrated and exhausted moments, and I feel gratitude for both of my daughters, the deepest kind of gratitude for the way things are.

Just as they are. 

***

I surprise myself, that I can feel this lightness, especially today. On this day that for many is solemn and serious, reflective and laden with guilt needing to be cleared and asking for forgiveness. I surprise myself that I feel anything other than rebelliousness about Yom Kippur, this holy day I was determined to mostly blow off this year.

Then I woke up this morning and felt peaceful, held. By an energy that is comforting, serene, gentle. It didn’t matter that I was not spending the day with my community back in California, but instead in my house and at the grocery store and at services that felt mostly foreign.

It didn’t matter that I hadn’t asked anyone’s forgiveness, nor made any big plans for ways I wanted to grow and expand in the coming year.

All that mattered was that when I stepped outside to watch four monarch butterflies and two fat bumblebees holding for dear life to the white flowers as the wind blew them furiously around, 

I felt connected… to all of it.

Connected to the wind, to the smells in the crisp fall air, to the bees and the butterflies, to the light streaming through their gold-orange wings…

Connected to Tikva. 

Connected to my essence, the most pure and true part of me.

Connected to a deep knowing inside me that I can and will continue believing in hope and love.

Perhaps the makings of a great and noble life are that simple.

.::.

And you? How do you connect with the part deep inside that is most entirely you? Is there something bigger that helps you feel connected? How have you stretched and expanded through losing your child? What makes you recoil, contract? What helps you to feel you are thriving? What are the makings of your great and noble life?