welcome

Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged, understood.

subscribe
search
Powered by Squarespace
« one day at suppertime | Main | running on the spot »
Monday
Nov092009

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?

PrintView Printer Friendly Version

EmailEmail Article to Friend

Reader Comments (13)

Fascinating post, Julia.

My personal bugbear has a tenuous link to my profession - actually it's mainly perpetrated by my boss. I work for a company that uses drama/ storytelling/ the arts in business. We are overly fond of the journey metaphor in my office.

I find it a little irritating when most people do it, but absolutely CANNOT stand it when my boss likens my experiences to a fucking journey. He takes great delight in assigning Jungian archetypes to EVERY PERSON IN MY LIFE. It drives me crazy. Recently my husband had a severe nervous breakdown and when my boss started blethering on about second thresholds/ lowest points/ road of trials, I finally snapped and told him that I found him very flippant and that I didn't appreciate him affecting to understand my experience because he's familiar with the work of Joseph Campbell.

He's a lovely man and I like him a lot, but his relentless desire to 'explain' things to me is so fucking patronising and I just wont take that shit when it comes to dead babies.
November 9, 2009 | Unregistered Commenterafteriris
I've come across people who have outright declared Liam's spiritual fate. Some have called him an angel, some said he was needed in heaven, others said that his existence was nothing more than a medical mishap. None of it bothers me. Well, the last one, perhaps, but only because it was used to minimize. That's beside the point.

What anyone else believes - other lostbaby parents, well-meaning friends or family, random passerby - is no reflection on me. Those encounters demonstrate one of three things: 1) the speaker’s conversational discomfort (hence, thoughtless platitudes); 2) the speaker's own personal history (hence, their own framework which they feel has been tested, and which they are therefore passionate about); or 3) the speaker’s genuine desire to try and comfort (however relevantly, or irrelevantly).

If someone stands in front of me and says with all earnestness, “Your son is with the angels in heaven now” I smile, and nod, and take that as a gesture, an attempt. It doesn’t get under my skin. It doesn’t bother me remotely. It's just one person trying to be nice in their own way. It might not resonate with me because I don’t believe the way they do – I’m not religious. (An undeclared and unmentored and completely unstudied Buddhist, maybe.) Another person foisting their world view on me in an effort to make me or them feel better might not resonate, but also, it won't offend me.

I don’t have philosophical or religious answers. I don’t have a position that needs to be prostelytized or defended. I’m perfectly content with just about any expression around loss. I’m a grief libertarian. I’ve never thought of it that way before, but yeah. I like that.

Great post, Julia. Fascinating.
November 9, 2009 | Unregistered Commentersweetsalty kate
When Henry died we had a strong compulsion to go over the sequence of events in minute detail, to pinpoint the exact times when we could have saved him (a thousand, a million, an infinite amount of times?). Then we had to decide who was at fault, and who wasnt (most of the blame landed squarely on our shoulders), then we said things like "If there hadnt been traffic that day we would have gotten to the hospital in time, all we needed was 5 more minutes of precious oxygen flowing". And it was ALL TRUE. But it didn't matter. He was dead, and we hadn't done any of the things we saw later that we could have done.

Later people said it was fate. It was meant to be (or rather Henry was not meant to be). I don't accept that. Henry was supposed to live, to breathe, and to be loved by me, and he died because of something as silly as traffic. There is no rhyme or reason, I see that now, sometimes people just die, sometimes cars drive off of cliffs and people choke on hotdogs. THIS is the hardest idea to accept of all, that there is no reason, I badly want one, because without one it seems like there isn't a reason to go on. But we go on, we do, and I have found small pockets of joy. the big picture is muddy now though, that spark is gone and its not coming back. We miss you Henry.
November 9, 2009 | Unregistered CommenterMindy
The things that tend to get me hot under the collar are the demands made on grieving parents - to grieve in a certain way, to behave in a certain way (whether that is more or less sad), to make it easier for others.

Why me? doesn't bother me, because I've asked that question. I have long believed in a Higher Power or Higher Being, with variance as to just how involved God (whatever God is) is in our daily lives, so accepting randomness is difficult for me at best. I understand the other side, the 'why not me' and why me often ends with feelings of guilt or deserving for some perceived offense or indiscretion of my past. I realized it is fruitless, so I don't dwell much on it anymore. Sometimes I still wonder, but it's not a chest-beating plea to the universe, and it doesn't rattle around in my head nearly as often as it did in the first days when I had not yet really accepted that it had happened.

Now that I have accepted it and have adapted to it, the why of it seems irrelevant. It won't change the outcome. If it were not for the necessity of knowing for future pregnancies, I would gladly forgo the testing I'm going in for tomorrow and live in ignorance, because neither my husband nor I can find an answer to the questions these lab tests are asking that we are wholly comfortable with. It's lose/lose either way when it comes to Gabriel, and win/win for any future pregnancy - the reality is unchanged by the answers, Gabriel is still dead. But we need to know and so I go.

As for religious philosophies. . . well. They are not influenced by my profession, but life experiences. . . I had an experience which led me to believe in God. For a long time I was angry with God, and I probably still am. Immediately after losing Gabriel, I was furious and raging at what felt like a betrayal - I had *prayed* for this child and I had *begged* for God to save him as I'd never asked for anything in my life, except perhaps the lives of my mother and husband when they were in danger because of suicide attempts. I had put my tenuous faith on the line and despite my misgivings, I had tried hard to believe and pray and the result was losing my son. Furious. I wanted to stop believing in God, and the big thing that stopped me was wanting desperately to believe that some part of Gabriel or some essence of Gabriel was still out there somewhere and that I might be allowed near him again someday.

Some friends sent me a necklace with a disk that was stamped with a bible verse. I'm not a huge believer in the bible as the Final, Complete, Utter and Only Word of God, but I think it's beautiful work. When I read what it said though, a jolt shot through and something in me clicked. The anger was pretty gone and there was something there. The verse said "The angel said, I am Gabriel. I stand in the presence of God." I don't subscribe to 'angel babies' but there was something in this that resonated in the core of my being, that spoke to me with the authority of truth. And I believe it. My son is Gabriel and he stands in the presence of God. I don't know why or how I know that, but I do, and since then, I have been comforted and I have felt him near me almost everyday. Often fleeting, but there, real.

The best I can explain it, and I feel it's long and stumbling and rambly. Sorry.
November 9, 2009 | Unregistered Commentereliza
Recently, reviewing my blog stats I came across a link back to a christian infertility forum, and a discussion about me and my blog. The general consensus seemed to be pity for me and my lack of faith, and more specifically the women were concerned that my not "knowing Jesus" meant that my grief was "true", and if only I could "know Jesus", "recognise the signs" he was sending me I would be comforted.

I felt kinda weird furtively reading a forum in which I clearly didn't belong, even if the subject matter was me and my dead baby.
I think though, that it's a good example of how I have come across a minority of people who do have very strong faith in a supreme being, and are not willing to accept that I don't.

I think we as dead baby parents should be allowed to grieve in exactly the right way for us. If that means believing in a supreme being/higher power then finet, and if it doesn't that's fine too. We do what we have to do to get by.
November 10, 2009 | Unregistered CommenterJeanette
Baby angels and, more especially, sentimental baby angel poetry, drove me absolutely up the wall the first few months after Teddy died. Partly because I didn't and couldn't buy into the idea that my baby is an angel, and partly because deep grief isn't a time for bad poetry. It's a time when you bring out the good stuff. While I was ranting in my head over the poetic attempts of friends and family to comfort me, though, I realized two things: 1) I am a horrible, cruel poetry snob, partly thanks to too many years of studying English Lit., and 2) I was still able to be a horrible, cruel poetry snob even after my son died. It was the first part of "the old me" I got back. Which probably means I should be grateful to bad baby angel poetry, but, um, I'm not.

Now I can look behind the bad poetry to the intent to comfort that's behind it, so it doesn't sting as much. "God has a plan" comments will still raise my hackles good and high, though.
November 10, 2009 | Unregistered CommenterErica
I sometimes think that if anyone deserved to have a child die, it's me. Or, I suppose, it is I, if you want to be all grammatical about it.

It's not that I'm a bad person exactly. It's more that I'm the kind of person that bad things happen to. Not only bad things -- I've had plenty of good things happen to me. But I attract bad luck like a magnet attracts iron filings.
November 10, 2009 | Unregistered Commenterniobe
I don't have any great insight on this subject but I just wanted to let you know that this post really struck a chord with me. As a longtime believer in randomness above all it's nice to know other folks see things similarly.

A side note that I suppose counts as life experience. The priest who arrived at the hospital to baptize Rosemary before we took her off of the vent made a comment about her going to see Jesus and becoming a little angel. Then he doubled back, corrected himself, and informed us that she would actually always just be a little baby since all of the angels had already been created and heaven worked a certain way. It reminded me of the difference between faith and theology. I'm can appreciate faith (even if I don't really have any of my own). It's all of the theory with no basis in observable phenomena that doesn't go down as smoothly.

Thanks for writing this and jogging my memory.

T
November 11, 2009 | Unregistered CommenterTracyOC
Hahaha.. Erica, I'm with you there. The bad poetry does my head in, too. Deep grief is the WORST time for crimes against the English language. I cried and cried when the newspaper messed up my son's birth notice. By 'messed up' I mean they missed out one comma and one hyphen. I'd even dictated the punctuation along with the message, but stopped short of making the telephone sales girl read it back to me the same way. I figured she'd realise I was a stickler for that stuff and take extra care. When she didn't, it felt like the equivalent of a chef spitting in a customer's meal after he complains. Such evil disrespect to me and my son!

You're certainly not the only horrible, cruel poetry snob out there!
November 11, 2009 | Unregistered Commentermoops
Julia, when I had my miscarriage way, way back in '02, this is exactly how I viewed it: although I was not given a reason (other than "Meh, these things happen about 1:3-5 pregnancies, no biggie") I could visualize the strands, the cells, replicating, dividing, connecting -- like some intricate machine and suddenly a piece went missing, and the machine tried to keep up but slowly unraveled and crashed and the strands and cells fell broken to the floor (which is I'm sure not remotely what happens, but that was my pretty little picture in my head). And it made sense. I was deeply crushed, but there was my reason. And it seemed like a good one.

With Maddy, perhaps I am too pessimistic now, because instead of viewing this scientific process as glass half full (like you said, scary accurate) I look at the failures (1:3-5 pregnancies ending in miscarriage; 1:~130 pregnancies ending in stillbirth) and wonder how it is we continue as a species. But that's pretty myopic I know given billions of people. And I think because the scientists are also a bit bewildered as to what happened to Maddy, I find it hard to visualize (even symbolically) what exactly went wrong. I know there's a scientific reason behind it, but lacking any way to paint a picture in my head sometimes makes me very frustrated. Not so frustrated that I believe a supreme being killed her or any such nonsense, but personally stuck. I don't like to think my daughter has pushed the envelope of deadbaby scientific knowledge.

As to what gets me in these discussions: Not that it makes me angry really, but I honestly don't relate to the "it's not fair" stuff. That to me implies a judge or referee making decisions about these things, and that frankly scares the crap out of me, nor is it in my mindset. Is it fair that a crack-whore gets a live baby? Well, crack and STD's can impair a baby in certain ways after birth, but chances are -- like you said, these things being very accurate -- the baby will be born alive. And I really don't like arguments that imply some babies deserve to live more than others because we're talking about babies here for pete's sake, and frankly I'd like it if they all were born healthy and lived. Not to mention an anonymous alcoholoic heroin using mom had a healthy baby who was adopted by someone in my family. And if you think I'd like anything less than good health and a happy life for that boy, you're really sorely mistaken.
November 11, 2009 | Registered Commentertash
moops - I ordered a ring with Gabriel's name and birth/death date inscribed (Gabriel Ross) and it came back Gabriel Rose. When I got that, I honestly sat down and stared at it and did not know whether to laugh hysterically or cry hysterically. Turned out to be company error and they corrected it immediately and free of charge, but for that moment I was just completely torn by the cosmic joke that ring seemed to represent. I have kept the box that Gabriel's ashes were returned to us in, despite having relocated the ashes to another box for final resting, because it is the only printed thing that has his complete name (and even it is wrong, as it hyphenated his last name, which was incorrect). My husband and I have different last names and we gave him both of our names, but his birth certificate and all the hospital records only indicate my name (in fact, my husband was referred to by name for the duration of our stay), which I know was one more small wound to my husband, as our child was always intended to have his last name.

tash - your words have really struck a cord with me. It's something I've noticed before from sweetsaltykate - people not understanding the flip side of the word choices they make. Like fighter or miracle for a baby that survives the nicu - or in your example, the unfairness of a crackwhore having a living baby. I am probably guilty of that - certainly in my very earliest days of grief (learning of Michelle Duggar's latest pregnancy within the week of my son's birth and death is a prime example) I remember shouting that it wasn't fair and why did X person get to have their baby? My wish was not for another baby to have died or another mother to go through what I have, it was just the only words I could have found to begin to poorly express my hurt. Which is interesting, because I don't believe in deserving, or some judge or referee making the decisions and certainly to say it's not fair or that someone doesn't deserve this implies that someone else does deserve it and that is not the case.

This will make me more aware of my own choices and words, and that is never a bad thing, is it?

It never ceases to amaze me how having a dead child changes your perspective on so many things. It makes me simultaneously more compassionate and more forgiving and less compassionate and less forgiving. Like understanding why people are afraid to say Gabriel's name or bring him up in conversation and being angry that they don't. Or how I completely understand how some women feel distraught and upset at learning their baby is not the sex they were hoping for and feeling in complete sympathy but likewise feeling complete disgust at the focus on 'the wrong thing' - the dual nature of this new life is perplexing and constantly forcing me to confront my reactions and assumptions about my judgments of other people.
November 11, 2009 | Unregistered Commentereliza
Such an interesting post Julia.
I suppose that if I was to ask "why me?" I would have to ask it of both of my situations.

Why should one of my daughters die?
Why should one of my daughters, despite her extreme prematurity, live?
Maybe the two questions act as a counter balance to one another.
It isn't fair or unfair, lucky or unlucky.
It is not a question of being deserving, despite how I frequently feel. I often feel that, if I got what I deserved, both my daughters would have died.
I can't shake off the feeling that the survival of one was just a lucky accident.
But it just is.
What is, simply is.
It isn't a question of merit.
Mine or theirs.

In my 'professional' life, I'm a statistical bod, so I should understand the nature of randomness. But I suppose it all boils down to 50:50 in the end, no matter how much fancy hypothetical modelling you throw at any given situation. It either occurs or it does not occur.
November 12, 2009 | Unregistered CommenterCatherine W
Wonderful word wandering Julia. It has always been biology for me. The God thing the afterlife etc.-just don't work for me. Though I love the song, food, and tradition of my Judaism I am not religious. I think even if I was it just wouldn't matter it would always be biology. It's tangible, it makes sense-things just went terribly wrong from the get go. baby taz was born full term-incredibly easy birth with undiagnosed trisomy 13 (yes doctor incompetence). 1-20-25,000 live births. Wow think about the statistics there. Statistics don't matter when it happens to you. The challenge is that the emotions don't jive with the "just biology thing". Though rationally I know my child couldn't live I am non the less devastated then a mother whose healthy newborn dies or a baby who died from a cord accident. You wouldn't love your living child any less if they suddenly became incapacitated. You don't get more random then baby taz. I'm with you gals on the sentimental dead baby poetry. I guess the thing that still troubles me the most is the inability for people to cry with you. It is such a nice thing when you can walk with a friend and just talk and cry and it feels so natural and not uncomfortable-but wow there just aren't many who can go there. I sure wish the DNA thing was perfect and umbilical cords were titanium and the world only had strong healthy babies. I love you woman for making glow-though I don't contribute often It is a place I seek out often. THough it has been over 3 years I still very much need this place.
November 15, 2009 | Unregistered CommenterLara

PostPost a New Comment

Enter your information below to add a new comment.
Author Email (optional):
Author URL (optional):
Post:
 
All HTML will be escaped. Hyperlinks will be created for URLs automatically.