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Wednesday
May302012

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?

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Reader Comments (34)

I couldn't agree more with all you have written, especially this part:

"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 see what happened to my daughter as a blip in the universe, no one is responsible, no one is to blame, it didn't happen to teach anyone anything, it wasn't meant to be, it just is....of course that's not easy, not easy at all, not by any means, but I can't see it any other way.
People sometimes tell me that they hug their children tighter knowing I can't hug Florence, that doesn't offend me, I'm just not sure about it either.
It's hard not to give her mystical status, I even sometimes do it myself, but I recognise it as a coping mechanism...if I imagine her as a sunbeam, a cloud, or playing in the woods with fairies, it's just to ease my tired broken heart, and I know it. That's ok.
Florence was a beautiful 9lb 3.5oz baby girl, a baby, she died, and yes a whole world died with her, no meaning can be found in that.
x
May 31, 2012 | Unregistered CommenterJeanette
Julia,

This post hits the same general themes as the imaginary other guest post I felt like I needed to write last week. I couldn't have written it as well as you have but I'd want to.

I've spent the last week and a half feeling like I missed some critical points about R's death. Most importantly, she didn't die because I needed to learn a lesson or because some higher purpose required serving. At the same time, I have learned some lessons. But that's different than meaning for me.

Meaning would be some sort of Hollywood story where R's death set off a chain reaction of events that led to me being in just the right place at just the right time with just the right people to prevent some sort of epic dam failure or bridge collapse. Makes for a good story but it isn't very realistic.

The people I've met because R died (as awesome as they are) are interchangeable with the people I would have met if she'd lived. But everyone I've met here and through other babyloss channels have a special place in my cold, little heart because they feel like extensions of my daughter. I wouldn't say that any of it is 'meant to be.' It's more like a pleasant surprise to meet such great people down here in the shit. I thought that her death meant the end of her and my relationship with her but, it didn't turn out that way. She's still part of my life even though she died. I'd rather have her physical presence but I'll take what I can get.
May 31, 2012 | Unregistered CommenterTracyOC
Wow, Julia, awesome piece. So much here, it is so incredibly in line with my thinking, and it is hard to articulate all this.

Firstly, I love this line" "...the only thing worse to imagine than their deaths being unfair and undeserved is for their deaths to have been fair and deserved." Fuck. That hit me hard. It is something I won't ever stop thinking about, I don't think. And the truth of it is that people always feel like it is comforting to say to me, when I tell them how my life changed after Lucia's death, how I write and connect other grieving parents and how I connect to them, when I talk about art and jizos and writing, when I talked about actively running still life 365, they'd say that Lucia's death had a higher purpose--for me to do this work and help suffering people, as though I am going into a community in which I do not belong. And I let them say what they themselves must find comforting. What am I to say? She died without any sense of meaning? I actually I believe that. She just died. No moral of the story there. If I believe her death was for my lesson, how fucking narcissistic am I? People do not exist for my lessons. People exist. I may learn lessons by my interactions with them, but I am not the center of the universe. TracyOC put it perfectly, "Most importantly, she didn't die because I needed to learn a lesson or because some higher purpose required serving. At the same time, I have learned some lessons. But that's different than meaning for me."

I felt like I had two choices in life after she died. 1. To stuff this experience down into the pit of me, never to speak of it again. It would have been a black hole of grief, I'm sure of it. All the other emotions would have been pulled into its gravitational force, sucked into the blackness, darkening every experience. I would have probably drank for a long long time. I would not have had other children. I would not have been a decent mother or wife. I would have been a limp rag of a woman. OR I could talk about it, write about it. Throw out my self-doubt and self-consciousness about my ability to communicate and create art, write publicly, put it all out there. I needed a community to get through this. This grief was too immense to manage on my own, the black hole of grief, existing at this event horizon, the moment she died, was already sucking everything I had ever experienced into it, belittling it, changing it.

It is complicated because my life did change after she died. It is the most incredible life I could imagine. I created this whole life for myself. The only thing that comforted me in living after her death was connections--hearing stories, bringing grieving people together, collecting their stories. I created what I myself needed after Lucia's death, and I still need--a new community. Because the rest of the world seemed intent on giving meaning to death, and giving it THAT meaning. I remember a hairdresser cutting my hair, she was 38 weeks pregnant, I was four months pregnant with Thor. And she said, "I believe everything happens for a reason. I truly believe that. There is a reason this happened to you." And I thought, "I believe you do believe that. And you believe that because your baby didn't die. You believe that because your baby lives, and you think you are special and he is special and the world is a better place because your baby lives and my baby died." Now I'm rambling. Thank you, Julia. Thank you. xo
May 31, 2012 | Unregistered CommenterAngie
There was no physical reason of Eszter's death. One day me&her were both fine and happy, the next day she didn't move anymore. The post mortem didn't give a reason either. She was a healthy, dead baby.
Yes. the whole world died with her.
I think that altough I have a living daughter too.

On wrong days I belive that I deserved this. Because I was not always a good mother, a good wife.
On better days I belive, that there should have been a meaning of her death. Then on these days I'm looking for this meaning. I didn't find any so far. When I cannot answer the why - than it followed by a wrong day again.
And later, again, on worse days I belive that none of us mean anything. We are just toys in God's playground, and God is neither good, neither bad, He is only someone, who likes to play silly games.
Or I'm facing with the fact, that I am not important at all, I am only a small something in the world, and it's actually good luck, that we still haven't died.

For me it's better to belive that Eszter's death happened on purpose. On my good days I think that all of us on the earth had choosen our destiny before our birth. I -God knows, why- had choosen a task, an experience, that I could only learn trough Eszter's death. And she had the task to experience death before birth. On better days I think that we -you and me, and our children, families- are chosen ones. Chosen for what? I have no clue. But I simply cannot accept Eszter's death unless I found out, what the hell the universe wants from me, from us with that.

Yes, I've been changed. But I've not became a better person.
May 31, 2012 | Unregistered CommenterAnna from the moon
I'd be in a world of fury and anger if I believed we'd lost Natan because I was supposed to learn or do something differently from it, because I needed it, or God thought I could handle it. The only reasons I look for from it are physical--as someone whose preterm labor still cannot be explained, the only thing I still want to know about why is what happened medically. For our sake, it no longer matters, but I wish that at the very least Natan's death could have yielded knowledge to prevent it from happening to others--and maybe it did. Maybe Samuel is here and this new babe will be here because we and the doctors became vigilant. But that's not a reason or a blessing. It's just a new dam built to preserve the new world after a flood destroyed the old.

And I still wish there were something more concrete--some new "aha!" about unexplained preterm birth that could have come from it, and that doctors could take forward from it. I suppose our story and experiences did add to the cumulative experience and knowledge of the young doctors/residents/med students who worked with the older ones at our teaching hospital, and that's something. That's a reason I always, always say yes when asked if a med student can observe. But again, that's not a reason to explain the past, just a reason to keep moving forward.
May 31, 2012 | Unregistered Commenterberuriah
I actually have a relative who persists in asking me, 3 1/2 years on, why this all happened. What the meaning was behind Kai's death, behind Chip's. What I was meant to learn. And, 3 1/2 years on, it is all I can do to answer her calmly, to say that it doesn't work that way, when what I really want to do is smack her.

I believe that as a culture, we simply suck at the baby loss narrative. What we understand, what we crave, is "It was hard. Then it got better. Now it's fine. " and "It was hard. Then I understood why it happened. And now I am a better person." What is true, at least for me, is "There was no reason. There is no answer. And I have had to learn to live with that and make a life that includes that reality." Since there was no medical explanation for Kai's death and never will be, I had only two choices- to accept a life with no answer, or to accept a life with an explanation that made me the most evil of evil people- someone who killed her own child through her own rottenness. I sat there for years. I can't anymore.

Riffing now: There is an amazing documentary called "Faith and Doubt at Ground Zero", in which they interview people about the meaning of faith and religion in their lives before and after 9/11. One rabbi, who officiated at far too many funerals of the lost, said something like "If you are going to tell me that it was part of G-d's plan to save you or your spouse or your child, then you need to be able to look a grieving mother in the face and explain why G-d wanted her child to die that day."

So, yeah, that.

I know I am mixing reason and meaning here. Maybe reason is an explanation, a cause. Meaning is the new knowledge that you take away. So maybe, maybe, I can sit a little better with having made meaning of the life I have stumbled into than I can with the idea that the reason they died is so I could stumble into this life.
May 31, 2012 | Unregistered CommenterDanielle
Julia,

What an awesome piece! I love your math analogy. There is infinity in every tiny speck of life, yes. And infinity was lost when my son died. Ah, leave it to math to elegantly sum up Truth.

I HATE it when people say everything happens for a reason. What a conceited, full of shit and fear effort to explain away the randomness of this world. There is nothing, NOT A SINGLE THING that I can think of that is worth my son's life. Sure, I look for lessons. Sure, I hope that Stefan will make me a better person, eventually. And, in my small insignificant ways, I try to create a positive legacy for him, make sure he leaves a trace beyond my heart. But is any of this significant enough to justify his death? Ha! Not even close! All the "reasons" fall laughably, pathetically short of balancing out, well, infiinity... (If anyone needed proof - I would gladly, in an instant, give my life and all the lessons learned, beauty perceived, etc., etc. if he could have his life and health back.)

Having said that, I am grateful for what little good has come out of his death. This community has strengthened my belief in the intrinsic goodness and improbable spirit of humanity. Here we are, broken people, not only persevering but somehow finding strength to support others, to be compassionate. I marvel at the beauty of glow mamas every day and thank my sweet boy for opening my eyes to a previously unknown richness in human souls.
May 31, 2012 | Unregistered CommenterMira
Wow, this was just awesome. Many people have told me that they've learned from my grief. That they want to learn from me. But I am quick to remind them that whatever they learn, it pales in comparison to my loss. It doesn't make my loss and grief any less because you learned something. Although, I am glad you learned. I don't think it was fair or deserved that she died but I firmly believe that Eva is in Heaven. So I am not really grieving the death of my daughter, because she is alive in Heaven. I am grieving the separation from my daughter. The years and years I will have to liive without her. The years and years I won't get to see her grow up into a young lady and the grandchildren I won't cuddle.

And still, niggling there is a little bit of meaning. There is meaning in her death. Though undeserverd it is meaningful. Like the beauty you see in the grief, I see meaning in her death. Our prayer has always been that many hearts would come to Jesus through Eva's sick heart. And some have. This is powerful to me. It is the only meaining I can see in her death. And while I wish it were another way it is what resonates with me. I am not trying to push anything on anyone here but this is meaningful for me...and you asked.
May 31, 2012 | Unregistered CommenterEm
I've often said that Ronan dying was just shit luck, meaning his death alone served no higher purpose, just years of grieving what could've been for the rest of my life. But this person I became because of it....yeah I learned a lot about her. It was forced at first, but now I have come to quietly appreciate the life lessons I am being taught because my emotions are so guttural and raw now. Would I see the injustices if he lived? Would I be so hyper protective of people suffering losses? Probably not. In this case I was left with a shell after he died. I had to start picking what I would pack it with before it crumbled into pieces...I chose to find some meaning.
May 31, 2012 | Unregistered CommenterReese
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.”

Huge sigh…Y-E-S to this, Julia.

And

“Riffing now: There is an amazing documentary called "Faith and Doubt at Ground Zero", in which they interview people about the meaning of faith and religion in their lives before and after 9/11. One rabbi, who officiated at far too many funerals of the lost, said something like "If you are going to tell me that it was part of G-d's plan to save you or your spouse or your child, then you need to be able to look a grieving mother in the face and explain why G-d wanted her child to die that day."

Danielle: I did see this documentary and the Rabbi’s quote helped me. Ironic my own didn't provide the guidance I needed when forced to confront baby deaths within the Jewish faith. The other "irony," is that I am a 9-11 survivor; and have had so many unhealthy, guilt-ridden, PTSD thoughts from this gut-wrenching, terrifying experience. When my daughter died in 2007, I actually thought I deserved it because I escaped death before, so now it had to be thrown in my face…I would have preferred my own death.

I don’t look for reasons anymore. The “lessons” I’ve learned through grief doesn’t make me a better person or a person who can be truly learned from. My Olam (world) will never be repaired or healed but I’ve somehow kept going, kept empathizing and sympathizing, kept doing random acts of kindness, kept trying to be a “good person ,” kept loving. I “make-up” meanings when I reflect where I was then and where I am now if my thoughts wander to that nook in my forest.
May 31, 2012 | Unregistered CommenterCava
Wow. This also really hits home for me too, as does the incredible comments. I just had a conversation with my sister-in-law who had a traumatic brain injury two years ago. Life has been crappy and she wants to believe that it happened for a reason--she needs this truth to cope with life as it is now. I get that.

Obviously, our situations are oh so different, but I cannot help but strongly say, Bullshit things happen for a reason. Bear did not die for a reason. God or Jesus or the Universe did not need him or make him die. He died. Terrible things happen for no reason. I suppose along that same vein, good things happen, also for no reason sometimes.

Positive things can come to me, to my life, to the lives of people I have connected with after Bear's death, but that does not mean he died for a reason. I am not a better person because Bear died. I am a better person because he lived.

"Each one a world. Still enormous, still mind-boggling." Wow.
May 31, 2012 | Unregistered CommenterJulie
Thank you for articulating for me why I see beauty in grief, in pain. Remarkable. Thanks for sharing. I'm sorry it took the loss of A. to bring you to this point.
May 31, 2012 | Unregistered CommenterLeigh
I'm new to this entire website, and this experience as I've just lost my daughter recently in February. I do not feel that my daughter's death was unfair but I do feel like I need to find meaning out of all this suffering. That doesn't mean that my daughter 'died for a reason' but I do think that her life and death have forced me to look at my life differently, to learn (for better or worse) a new way of existing.

There was a quote that I thought of often while I was pregnant and more so now that my daughter has died, “A child is a sacred guest in the house, to be loved and respected – never possessed, since he belongs to God. How wonderful, how sane, how beautifully difficult, and therefore true. The joy of responsibility for the first time in my life.” I feel like I need to come to grips with this lack of possession and permanency of all relationships - not just my relationship with my child.

I feel that it's a knife edge between despair and a transformation, possibly, hopefully to more wisdom....Right now the possibility that there may be some meaning and purpose for me to understand in this experience is helping me to get up each day, go to work, keep loving my family and friends and keep hopeful for the future. It doesn't mean that her death can be weighed or measured against the 'wisdom' gained through self reflection. It simply means that I feel there is 'work' to be done on myself in order to live in this world without her. That I feel I need to develop a strength of character proportionate to the suffering in order to survive.
May 31, 2012 | Unregistered CommenterMegan
thanks for writing this post. i agree whole heartedly. the sentiment that these things happen for a reason is very subjective... and i know that some blm's also subscribe to this philosphy, and i don't want to hurt them or to belittle their beliefs or coping process... but for me, yes, there was no lesson, or good, or deep meaning to be found in my children's deaths.

at first, i felt this very same way. but then, hearing and seeing that people do, in fact, believe that there is some kind of meaning or direction or greater purpose involved, i tried to be fair and consider this possibility. i thought, hmmmm. what if god is building a big army of goodness, and s/he needed innocent babies to fill the ranks, sort of along the lines of the virgin birth. was my coral rose taken for this higher purpose? should i feel honored instead of bereaved?! well, no... this did not feel right. what could it have been? i racked my brain, and searched my soul. unfortunately, like the crazy 8-ball, all signs pointed to NO. there was no meaning or purpose. unless it had something to do with a vengeful god, doling out punishment. i rejected that premise as well. because... fuck that!! no one deserves to lose a child. no one. and no child deserves to be made some TOOL in some grand master plan to make us see or do or live better, by dying.

then, when my anton died, it sort of shattered a lot of people's suppositions that all this was happening for a reason, a greater cause, a bigger picture. wtf... where was the deep meaning in his death? because then, all it could mean was, either, life just sucks, or my husband and i were fucking cursed. i choose to think that it is the first case- life can SUCK, big time, and there is always something worse and more horrific to prove this.

having said all that, i do sometimes fantasize about god's great army of innocent babies, ready to nix evil in every hidden corner, my coral and anton holding rank and fulfilling their "purpose", and i think of how proud i would have been- if this was not anything but a wish or a dream. wouldn't it be better and easier if it all made sense? and their was some kind of equalizing justice that made it OK for babies to die? i need this break from reality sometimes, because it feels so lonely, and stark, to have babies die. to bury babies, or live with their ashes, only, or, in general, to be without them. to be without. it is so tempting to make shit up, about why. why?!! 7 years later, i don't lose as much sleep over this question as much as i did in the first few years. for me, i have come to accept that the answer to 'why?' is... because it sucks. life sucks, and there are no clean, clear cut, easy answers. it just is. not fair. no reason. no blame. no culpits. or, even- culprits, yes... but no justice.

and, lastly, i also feel that there was some beauty to be found, even in the murky shitpile. i admit that some enriching things may have come as a result of the grieving process. but, i admit it begrudgingly... which one of us would not trade our newly-found empathy and understanding for our babies to be alive instead of gone? this kind of 'back-door' beauty, i am not all that happy to have experienced it. i don't wear my badge of survival with much pride or honor. i wear it with a solemn understanding that life includes death. even the deaths of my children. yes, even their deaths. life is one big, messy package. it doesn't make sense, and although we try to make it fit into nice tidy boxes, all organized and ready to make sense in the end, the fact is, for me anyway, it just is non-sensical. and that is a lesson i learned early, for the most part... because my babies died out of the order of things- i was supposed to die first, right? wrong. their deaths broke that bubble of expectation & priveledge. now, i relate to atrocities happening in africa, in south america, in, well, everywhere else but my middle class american lifestylle. nope, no meaning in the end. people who find a greater meaning for my children's deaths, all i can think is that they just havn't learned MY lesson as of yet... just wait until they have an unfair loss, too great to bear. and then, they will understand better, how hard it is to accept the unacceptable.
May 31, 2012 | Unregistered Commenterss
This is a stunning piece Julia. Seriously thought provoking. You have put words to what I've been feeling but unable to articulate so clearly.

I do not believe there is any grandiose reason that my Margot died in a tragic accident. Nor do I need their to be any meaning. I never even felt like it was unfair that she died, or that I deserved a living child. There is too much pain and suffering in the world to think otherwise. The world is chaos to me, luck and unluck, chance encounters, random and full of life and death. To think I deserve anything seems preposterous.

In the beginning, I wanted things to be different after she died. I wrote about how depressing it felt for my daughter to die and then my life to be the same. A few months later I realized the idiocy of my words. OF COURSE I WILL BE DIFFERENT. I couldn't remain the same if I tried. And this is where I am today - a much different person. Margot has given me gifts that I will carry with me, like those who I have met through her loss and changes in myself, but these do not bring meaning or purpose to her death. They are simply bi-products. In this way, I agree with TracyOC - they are a "pleasant surprise" and I'll take what I can get.

On and on I could go. Thanks for a wonderful, wonderful post.
June 1, 2012 | Unregistered CommenterJosh
Wow, this really captured me, I want to jump and shout YES.
YES to this "..But, yes, what was lost when he died, what we lost, is an entire world."
and this "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,"

I never felt my son's death needed a meaning, I too, was livid at the thought of anyone turning my son's death into anything but what it was: worlds, lost. Nothing beautiful about it. Except the love we have for him.

I have always felt uncomfortable about looking for a higher purpose in his death. I've shied from finding any meaning in his death. Did I learn from it? Sure, but things I could've done without learning. Like Angie said above, people don't exist for my lesson, and I'll add, nor do they die for my lessons.

I initially thought that in his death I would have to find some new me, some new sense of purpose, to make my life into something. But I haven't. I've just kept living, and most days, that's enough, without any grand transformation.

The higher purpose would only have been found in his living- the world he would've created, instead of the shattering destruction of his death. His world that was lost, the loss of the person I would've become in his living. Rea
Thanks so much for a brilliant piece of writing, something to ponder.
June 1, 2012 | Unregistered CommenterVia
This is wonderful. Beautiful piece and beautiful dialogue.

From moment one after my daughter's death... and for every painful moment since... I have never once believed that I, or my daughter, or my husband, are so special that some omnipotent being one day decided: "Steph needs a life lesson in grief and suffering. I think I shall take away her daughter, then give her a son that will struggle for his life. Through this, she will gain enlightenment."

No. I believe that we are all dust in the wind. Death and illness are just as much a part of human existence as life and health. Just opposite sides of the same coin.

Life is random. So much of it comes down to luck. All of us... all of our children... will die. It is just a question of when. Those people who manage to get through life with healthy children who live into their golden years? Well, they are lucky.

Have I been forced to make the best of the lot that life has handed me? That is a different question. While I have no belief that there was the remotest purpose to any of this, I do believe that the best any of us can do is to find whatever positives we can out of the grief and loss. This has nothing to do with finding a purpose. It is merely about survival.

I've lost count of how many times I've been given the lines: "Everything happens for a reason." "God only gives you what you can handle." "Someday you will find that there is a purpose to all of this."

Each and every one of those lines translates into the same thing.

"Thank god it is you and not me."

Oh, and Jeanette, to me the absolute worse line anyone can give is: "I will hug my little one tighter."

How anyone could think that the idea of "the-thought-of-your-dead, -cold-baby-makes-me -appreciate-my-living,-breathing-child-more" is comforting is beyond me.
June 1, 2012 | Unregistered CommenterSteph
"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."

But what if we never loved them?

You've put your finger on the heart of my problem. The problem, of course, being that I don't have much of a heart.

My loss isn't real because my love isn't real. And vice, I suppose, versa.
June 1, 2012 | Unregistered Commenterniobe
Oh, Niobe. Your love is real.

I don't believe that you would still be coming to Glow if it wasn't.
June 1, 2012 | Unregistered CommenterSteph
Steph: SPOT-ON.

I've lost count of how many times I've been given the lines: "Everything happens for a reason." "God only gives you what you can handle." "Someday you will find that there is a purpose to all of this."

Each and every one of those lines translates into the same thing.

"Thank god it is you and not me."
June 1, 2012 | Unregistered CommenterCava
This is really really great. Recently my BIL told me how there has to be a reason for Camille to have died because he can't imagine how something so horrid would happen for no reason. I have told him mulitiple time that there was no reason for her to die. That there is no reason good enough. He really angers me when people say there must be a reason. I wonder if they would feel like there was a good resin for their child to die- the answer is No!
Sometimes shit just happens and then we try to make good things happen because of the tragedy. But a subsequent child, becoming a compassionate person, founding an organization are not REASONS that our child died. Self absorbed in the events falling in favor with you does not mean that they are happening for a reason. We all try and find meaning in our lives and finding positive ways to cope with the grief and tragedy we have been dealt but that is not a reason... It is coping. Survivors... Of random horrid experiences. Not following a predestined path.
June 1, 2012 | Unregistered CommenterRenel
Wow, all... Thank you for these wonderful comments. Hectic day(s), and I am only getting here now, but I read them all. I want to respond to each single one, but I am afraid that will end up making another post-length something or other. I guess if I am trying for brevity here, I'll stick with the predetermined (reason) vs. what we make of it after thread. I wish I was more clear on that in the post.

I think we are not obligated to try to become better people or to do great things following our children's deaths (sort of like it annoys me when I hear people judge infertiles for seeking expensive medical treatment as opposed to adopting because "there are so many kids who need a home"-- true, of course, but who decreed that it is the responsibility of infertiles to fix it?)-- sometimes just surviving is a big accomplishment. But to the extent that some of us do amazing things, or even just good things, or even just make a good life for ourselves and those we love, like many of you I don't see any of that as a reason for our babies to have died. Judaism teaches that the rituals of grieving are about and for the living, not the dead. I find that to be a very wise teaching, for it is those still alive who need to find a way to go on. I see all of the things that come after our babies die in this same way-- they are not a reason for the deaths, they are how we chose to live in the aftermath. And in that way, these things we do may tell somebody about what kinds of people we are or what kinds of people we have become, but they are still not reasons. It's kind of like the distinction Danielle made about the reason before or the meaning extracted after. I guess to me it matters that it is us doing the extraction of that meaning. We are active agents in this, we are making choices, and to me that active participation itself negates the predetermined nature of the "reason" thing. So if the founder of the organization I was describing has said that their experience showed them a need and moved them to dedicate a lot of time and energy to filling that need, I would stand up and cheer. But the way they said it instead left me dumbfounded.

Danielle and Cava, thank you for the documentary riff. I am going to try to find it. My own rabbi was very helpful, and I am so sorry Cava that yours was not.

And I am so very sorry about all the thoughtless comments everyone has been subject to. I too see them all as boiling down to "thank goodness it was not me," or, maybe "there must be a reason it was you, so it won't be me, since the reason won't apply to me." I am also trying to imagine what would possess someone to keep coming back to a bereaved parent with this same "reason" thing over and over. That's not thoughtless anymore, it's kinda into way inappropriate territory.

Last thing. Niobe, I have to call historical revisionism on you. Some of us were there through your early years. That's really not how I remember it. It may be a potato-potato thing, but I really think you are not wanting to call it love, and it is absolutely your prerogative to call it what you will. But whatever you call it, I remember, and I respectfully disagree.
June 1, 2012 | Registered Commenterjulia
Thanks for your response Julia! Spot on, especially your last paragraph. That's not how I remember you either, Niobe. Funny, realist, brilliant, sardonic, yes. Heartless, no. Or as I remember you putting it then, black hearted. I still don't think so.
June 1, 2012 | Unregistered Commenterberuriah
This post was something I really needed to read - it helped to read your perspective and soak up your thoughts - I think for many of us coming from faith communities, there's the implication that we are supposed to learn & grow from loss. Even when things aren't said, sometimes they are felt.

But what you write about what is lost, the enormity of it, of the difficulty and fruitlessness of looking for meaning in it, strike me as so very, very true. In the early days I wanted an explanation, someone (God, the Universe, the Devil) to blame. Maybe that means that I assumed there was some meaning behind it? I don't know. I wanted to hurt and tear and bite and ravage and kick someone and I carried that for a long time. Letting go of that was hard, but now that I have (mostly, most of the time), it's easier to see the love, I think.
June 1, 2012 | Unregistered CommenterErica
This post reminds me of a quote by Charles Dickens: "And can it be that in a world so full and busy the loss of one creature makes a void so wide and deep the nothing but the width and depth of eternity can fill it up!" Losing a child is losing a lifetime of memories, experiences, and potential. The loss becomes less the focus of your existence over time, but there is never a time when the loss is not profoundly felt.

Both of my children died or Alveolar Capillary Dysplasia, a rare and universally fatal lung condition. The efforts I make to educate people about the condition are not about bringing meaning to a their loss, but to raise awareness and hopefully find the answers so that in the future families will not lose their babies to ACD.

I hate when people say "Everything happens for a reason." I know in my soul that this is not true. I do believe that every situation, no matter how terrible, has the potential for beauty. People that otherwise would not have brought into your life, a new appreciation for the things you have, opening yourself to possibilities you would not have otherwise considered. But I do not believe those things are the "reason" they died and I would give it all up to have them back.
June 1, 2012 | Unregistered CommenterKim
Julia, beautiful writing as usual. Thank you.

I struggled with this for a long time, too. When my little girl died, someone gave me a mixed CD of some really lovely songs about struggle and grief. However, amongst those songs was one in which the primary lyric is "there is a reason..." And every time that song came on, I would become livid. "Bulls**t!" I would think to myself. If there's a reason, I certainly have zero interest in knowing what it was. Because no reason could be good enough to wash away the pain of the loss of my only daughter.

In October it will have been five years since we had her in our lives for twenty brief, but weighty, minutes. Still I know that I don't want there to have been a reason for her death, But beauty from the ashes? Ah...that's another thing entirely. I long to move forward in some way that acknowledges that the world is a different place for having her in it, no matter how briefly. I still haven't figured out what that beauty will be, and it will never replace the gaping hole where my sweet little one should be. But if there can be a small spark of light in a place where otherwise there would be a gaping maw of darkness,I think that would be good for my heart.
June 2, 2012 | Unregistered CommenterHMC
Thank you, Julia, for starting this discussion and articulating the points so beautifully. I know this has been said by Danielle and others, but I would reiterate that for us, the distinction between reason and meaning has been really important. I do not believe that there has to be a metaphysical reason, or that if there were one, that we or anyone else could know it. I believe that sometimes, these things just happen because that's how the laws of nature work. We have thought of a mystically oriented narrative that provides a semblance of reason and accompanying meaning that has helped some of our older kids and community members, but neither of us (the parents) are all that convinced of it and that's fine.
But meaning, I feel like if I have to live the rest of my life without my daughter, I want to squeeze as much meaning as I can out of this. I want to grow and become a better person in ways I otherwise may not have. I want the world to be helped because she was here, in whatever and as many ways as possible. For us that has come in how we (try to) handle our grief, how we buried her, how I think about my professional life, how many more kids we may have after this (I feel like I may want to have one more than we otherwise would have, so the world ends up with more life because of Y's existence, not less) and more ways that I am sure I have yet to discover.
I am curious to see how my answer changes over time. It has only been three months since Y died, and I remember writing some weeks ago that I want to change because of this but I don't know in what ways, exactly. So I guess I will see.
I also want to say thank you to everyone who has shared their thoughts and experiences; I have read and appreciated every comment even though I have not responded individually.
June 4, 2012 | Unregistered CommenterHannah
Thank you, Julia, for this. I can't begin to highlight the comments or phrases in the original post and the comments that resonate with me. There are too many.
I am a bit over 2 months out from the loss of my son, so I feel that I am still in uncharted waters for myself. I don't know what tomorrow will bring, let alone next week, next month, next year....
I do know, though, that I have found myself very resistant to hearing that there was a bigger reason for his death. Within hours of finding out that he had died, I was getting my blood drawn--it turned out that the tech had experienced the loss of a baby. In trying to comfort me, he said something along the lines of "I'm sure there's a reason. G-d must have a plan. You never know, maybe the child had special needs and he knew you couldn't handle it." Although I know he meant well, those words still echo in my thoughts. Initially it was just simply that I was offended that he implied that perhaps I wouldn't be able to "handle" a child with a disability or that my son would be a "less-than" if he had a disability. After we found out that my son did have Down syndrome, though, the words started to haunt me as "What if he's right?" I've had others, too, say "it all happens for a reason," particularly after hearing that he had Down syndrome.
I'd say I'm still waiting to know what that reason is, but that wouldn't be totally honest. I think that the reason that so many of these post resonate is that I don't know if I'm looking for meaning or not.
My baby died. That sucks. It's not ok. I am changed, but perhaps not for the better. I'd like to think I was an ok person to begin with, so the implication that this will make me a better person or a stronger person doesn't sit well. I'd rather be a weak person and have my son sleeping on my chest as I type this.
I don't feel the need for my son to change the lives of others--don't tell me you're appreciating your children more or I'll just ask why you didn't appreciate them in the first place. Don't tell me that his death will make my other children more compassionate--I think we could have handled that one without stealing a life.
But I do think that we can keep him alive and do good for other people and other families. Yes, perhaps we'll be more conscientious about that because of him, but that's not a reason for his death or a higher purpose or meaning. It's just one way we're trying to deal with the crap hand we've been dealt.
Julie, your comment "I am not a better person because Bear died. I am a better person because he lived." sums it up, I think. I am a better person because of every second that my son lived and every second that he was with us after he died. I am not a better person because of his death. I am not a better person in spite of his death. I am a better person regardless of his death.
June 4, 2012 | Unregistered Commenterjoanna
Someone sent me this quote. (see below) I feel like what you said at the end about there being a beauty to the pain and grief...that is what this quote says. So many people say, "I didn't mean to make you cry"...or ask when I will "feel better." My loss is quite recent (3 months tomorrow) but I still feel like I don't see a bad thing to being sad. I don't get why we can't have some kind of sadness that lasts our lifetime. This quote explains that and I have sent it to people so they know I am OK with sadness in some sense. It gave me my children who are not here (mono-mono twins).

“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it. At first that sounds very hard, but at the same time it is also a great comfort. For to the extent the emptiness truly remains unfilled one remains connected to the other person through it. It is wrong to say that God fills the emptiness. God in no way fills it but much more leaves it precisely unfilled and thus helps us preserve — even in pain — the authentic relationship. Further more, the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain”

- Dietrich Bonhoeffer
June 5, 2012 | Unregistered Commenterjessica
Stunning post, Julia. Thank you. This will be another that gets bookmarked and returned to frequently.

Reason and meaning, purpose and direction. Different things, yes. I did want meaning. I didn't want my world to be reduced (as I saw it) to randomness and luck. I wanted a reason, I wanted answers, and yes, I thought it was unfair. I'd already been through multiple losses, why get so far and be told all was well and have it snatched away? It was unfair.

(Now, there are still parts of me that stamp my feet and say 'unfair' but one thing I've learned is that fairness has no place here. The question was once posed and has rattled around since - 'not "why me?" but "why not me?" ' Perhaps that is another form of searching for meaning. . .)

I do want to bring meaning to his life, or derive some purpose for it - I feel he is owed that. Perhaps because that is the only way that he is seen as real or impactful? Because I want others to have some small experience of the world we lost? I have never figured out what that purpose or meaning is. Some people have clear paths, I have not. I guess I've learned that it's about the little things for me - the striving to be compassionate, to listen, to remember other's griefs and hidden pains and be sensitive to them. Would that it were easier.

I certainly have been changed, and I am grateful for the lessons learned. Others said they'd trade it all in a heartbeat - my problem has been that I've never been sure I would, actually. I don't seek to be a better person because of his death, necessarily, but I think I am one. I am less selfish and self-centered, I am more open to others and their faiths and beliefs, I know my own strength now. Would I trade all of that for Gabriel, alive? Perhaps some of it would have come anyway - Vivienne, alive, makes me strive to be better and the very nature of an infant demands self-sacrifice and lack of selfishness (I want to sleep more, but she needs to eat. Her needs win out, unquestionably, if not always graciously). Other lessons, other people, other directions for my life would have come and gone. Would I have appreciated things as much? No idea. Certainly the flip side of appreciating the beauty and fleetness of life is the overwhelming guilt for the impatience and short-tempered days and the inability to achieve perfection . . .

No, his death was senseless and potentially preventable. There is no meaning or higher purpose (beautifully put, Tracy) in it. There is grace and beauty to be picked out of it, should I wish it, lessons I can learn, meaning to be found, purpose there, if I choose. But not choosing doesn't diminish him or his existence, and doesn't shame him or me. I choose because it fills a need in me, I think.
June 7, 2012 | Unregistered Commentereliza
Maybe the word "meaning" is just the wrong word. The whole world and everything in it are invested with meaning, I think. Maybe what people mean when they say a baby's life and death have a meaning is...that they were profoundly affected by witnessing this little person. I think when we are open to witnessing another person we are open to being moved, inspired, deepened. Maybe we become capable, because of our witnessing this person, of greater acts of love, and understanding. Maybe we gain wisdom, empathy, and humility. If our witnessing of this person brings out our better selves, then it does, I think, honor the life of that person.

To think a baby died so that we could have meaning is, I think, a very self centered view that sends the universe wobbling off kilter. Maybe, instead, we should say: "I was allowed a window. I was allowed to witness. I am grateful for this person and how profoundly they affected me."

Because I have been profoundly affected by my daughter. She moves me. I feel more love because of her. I would have anyway, and I can say the same about my two living children. Witnessing her in particular, though- her unique life, what she did with it while she was here, and how far too short it was- has allowed me to see everything differently. Because of her.

Her name- Adia- is Hausa for "gift". And she was, and she is.
June 10, 2012 | Unregistered CommenterJen
I think what gets me going the most is when someone tries to attribute some kind of meaning to the death of my son. Everything from "it was for the best..." (as he had a small anomaly) to "now it must seem you get to see the meaning of things" (as I am expecting his sibling) is enough to trigger a black-eyed defense of his right to live in me. Death had no meanimg.

Yet I'm struggling as I'm pregnant again. Even though it would be physically possible, it's not likely I'd go for siblings so soon after Aleksas had he lived. Does that mean his death was needed for this little one to gain life?

Then, suddenly in a waking night a few weeks ago - I sort of found a "truth". Aleksas was the result of my 18th fertility treatment. He was my last attempt. I was so surprised and overjoyed to find myself pregnant. And then, as a cruel joke by god (he was born 1st of April none less), he was taken from me. The life I wanted, a life I could almost smell, was once more out of grasp. But, knowing I'd found a method that actually made me pregnant (and knowing he died because of his anomaly) - I tried again. Was his death necessary for this childs life? Is there a sort of meaning to it? The question haunted me. Til that waking night, when it struck me: It wasn't him dying that made his sibling come into being - it was him living. If he had never been, I'd have made that last attempt and gone on without knowing I could become pregnant. His life, however short, was important - his death, too early, was not. And in some way that came as a sort of peace over this pregnancy.

There is no meaning to a death too early - but there is a meaning to a short life. I honor and give grace for the life he lived, however short. I mourn and detest that he died from me before I got to hold him and care for him.
June 23, 2012 | Unregistered CommenterFC
Thank you for this post.
I've been trying to figure this out for weeks now, I suppose I needed a starting place in order to set my own mind right again.
After Jack died and Andrew left, we decided that we should seek counseling, for ourselves as grieving parents but also if we ever wanted any hope of being together again.
I think, no, I know that I was more certain of wanting this second part.
Our midwife recommended a counselor and we made an appointment. I was assured that she was an "expert" in grief and felt comfortable handling both our loss of our son and our relationship crisis.
The first two things she told us were: 1. Jack chose to die. He chose not to be here. Jack had a choice and he made it.
2. Jack had things to teach you, he had a purpose and you just don't see it yet.

We were five weeks out from losing Jack and I couldn't think straight. All I wanted was answers, any answers, I was not in a place to process or argue.
I remember sitting mute on our couch while Andrew held me, nodding and sobbing. I thought, "Yes, this must be right." but in my heart I knew that it was not.

I caught on to the "chose to die" part at our second secession, realized I couldn't have that shit floating around in my head and we stopped seeing the counselor.
The "something to teach you"/life lesson part I could not have sorted out -- or it would have taken me a very long time -- without your post.

I am so grateful for others along this road who carry lanterns, pieces of answers, part of a path to follow. I might get there on my own, eventually, but this certainly makes it easier.
August 5, 2012 | Unregistered CommenterGabe
I love this. Reading it felt like breathing.
Thank you.
August 9, 2012 | Unregistered CommenterJ

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