Saturday, 10 October 2009

Viability (again)

Thank you so much for all your kind words about my last post. I hesitated over hitting the publish post button for quite some time after I had finished writing. I find it very painful to remember the times when Jessica was so ill and I am reluctant to admit, even to myself, that there was ever a time that I wished she would be left in peace to die.

Thank you also for putting up with my rather prosaic dreams. I read about the fascinating dreams of other bloggers with envy. Apart from when they are frightening then I'm actually quite relieved that mine are generally mundane. Seriously, anyone who ever had to psychoanalyse my dreams would be left extremely bored.

It turns out that I still have yet more demons to exorcise when it comes to viability so here is yet another post on the topic.

One thing I have noticed, both through my own experience and through reading those of other bloggers is that, should your child not reach the point of viability or full term, you are somehow entitled to 'less' grief.

As though grief could be distributed in a nice, neat proportional manner.

I knew I could manage to wangle a graph on to this blog sooner or later. You can take me away from my job but you can't take my graphs away.

Thus . .



where variable x represents gestation and variable y grief.

If your baby scores more highly on variable x, the world at large will give you more slack on variable y and k is some weird constant decided by mutual agreement between old ladies, doctors and busy bodies.

If your child only makes it to point x1 gestationally then I am afraid you are only entitled to the level of grief defined by y1 on the grief scale. If you exceed this predefined limit people are probably going to be having words with you.

On the other hand, if your child makes it all the way to x3 gestationally then congratulations. You are now entitled to grief levels all the way up to the heady heights of y3. Come on down.

Oh and by the way please make sure you've tidied up all your grief after four weeks. We don't like things messy around these parts.

Oh and shut the door on your way out won't you?

(And I'm going to have to ignore point x4,y4 because I'm not sure quite sure how to interpret it in the context of the example that I've set up. If your baby has a negative gestational age you are also entitled to happiness? Nope. Doesn't make any sense at all. So please ignore that bit of the graph. The stupid thing seems to be back firing on me now.)

Here I am going to edit my original post to add an excellent point made by Tracey in the comments on this post - 'the other key factor in this societal 'grieving allowance' is if you have other living children. If you have other living children, take the square root of your grieving allowance, and then people want you to move on'. So true, thank you Tracey.

If Jessica had died, many people would have tried to tell me that I had a miscarriage. People don't usually say that to me because miscarriages don't generally result in living children. But if I didn't have Jessica, I know that is how the birth of my twin girls would be described, as a miscarriage.

I don't have anything against that word in particular but I don't like the implications of that phrase. It feels as though other people are trying to imply that my daughters were in some way not people, not real. Only a figment of my fevered imagination. But Georgina was a person. A real, honest to goodness person. Not a medical or biological process. Not an aberration that simply wasn't meant to be. She was a person. My life isn't better or happier without her in it.

Perhaps it is a lack of the correct words to describe grief in all its different textures and forms?
Perhaps we are so uncomfortable with death and the emotions associated with it that society just decides to lump every single feeling following a death into a big jumbled pile, stick a label on that says 'grief' and then run away?
And perhaps sort it into stages, denial, anger, acceptance, whatever. And then still run away.

It seems to be considered a finite process, one that will reach a conclusion prior to the death of the person doing the grieving. There are limits and time frames applied using rules that I cannot begin to comprehend. Some actions are unseemly. Some bits must be conducted in the privacy of your own home. It must all be finished with by the second Wednesday of the month following the death.

I hope that I will never, ever imply that somehow a person is not entitled to grieve.
I've only ever experienced one situation, the loss of a twin who was born prematurely.
I've never lost a child at 12 weeks gestation.
I've never lost a child at 40 weeks gestation.
I've never given birth to a baby who never took a breath.
I've never mourned for children who never existed, who never will exist.
I've never lost a child of ten.
I've never lost my husband or one of my parents.
I've never grieved for a sibling.
I can't really understand any of these situations. I can try but I'm only imagining. I haven't lived it.

But I hope that I never, never, ever, say to anybody, no matter what the circumstances . .
What you feel isn't valid.
What you feel should be squashed down and denied.
What you feel is excessive and strange or, equally, what you feel is insufficient.
You should pull yourself together and get 'over it' and get on with your life.
Life is for the living.

Your loved one didn't matter. They certainly don't matter now that they are dead.

Because isn't that what an uncomfortableness with grief actually says?
That this person, this human being, be they young or old, born dead or alive or even if they only exist in fond imagings.
This particular person, who is so special to you, doesn't count for anything with us?

29 comments:

  1. Very nicely put. I completely agree witn you. This wisdom I have today is the result of my Akul's death. I now understand grief like I never have before.

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  2. Another magnificent post. Someone asked me the other day when I told them my oldest was stillborn if I reached 28 weeks. And I said, yes, she was almost 41 weeks. But I wondered what her point was? What would she have said if I said "no, she was 25 weeks." Would she have said "oh it was probably for the best then" or some such idiotic statement. It makes me angry for anyone like you who lost a baby much earlier than me. I know, as I've been reading here long enough, that gestation or age does not change our love. The love is all the same. The circumstances are certainly different, but I know the love is the same. We all lost a baby, no matter how far along they were and that just goes against the natural order of things.
    Thank you for always saying the things you do. While I know you don't fully understand my loss, I also don't fully understand yours. But by reading and supporting one another, we're learning and becoming more compassionate and hopefully better people as we stumble along.
    xo

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  3. I hope I never do any of those things as well. :(

    I think it's all variable. My parents gave me three months to get over the death of my five and a half month old... The birth of their other grandchild was a determining factor for them.

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  4. Hi Catherine,my baby died at 40 weeks, well 40+3 to be precise, she did take her first breath, actually she lived for six hours, and for almost one of those we had no idea how sick she was.
    One thing I've discovered since losing Florence,although I think I knew this is a vague,didn't want to think about it way beforehand,is that grief is not quantifiable.
    We as babylost parents know this only too well.
    Having never faced birthing a preemie,or having never even had a miscarriage (Oh yes I was pretty damn smug about that in the past.)I can't say I know how that feels,but I do know my Florence was loved and cherished from the moment of conception, she was part of our family for the whole 40+3 and six hours, and had it been any less (or any more) she was our child. (One of the team, as my dh likes to say)
    She wasn't just a "baby", she was/is our fifth child.
    I had a particularly insensitive person say to me the other day that it was good to see me "back to my old self", it took all my strength not to punch her very hard.
    Just because I'm, up, dressed and functioning, doesn't mean I'm ok, certainly not "back to my old self", she's gone forever.
    The truth is, everyone wants to think we babylost are ok, they can't imagine the pain,the anguish,the deep deep sadness, so they tell us we "look great",we are "brave" because then they can deny the horrible truth of the death of our children.
    Urmmm, sorry, I'm waffling here,and clumsily trying to say,gosh,I'm not even sure.
    Thank you for your blog,I've read everything, and I'm so sorry you don't have Georgina in your arms along with Jessica.
    x

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  5. i get frustrated when people want to point out how strong i am. i know i AM strong.. considering what ive gone through and that i havent spent every day on the floor with a blanket of tissues surrounding me (only some days!) or banging my head against the wall. but i feel like being encouraged to be strong is like asking me to shut the door on the way out. no, i wont shut the door, not even if you say please. i am grieving.

    i admit, i do find extreme grief and horror that i was full term. im not trying to make anyone feel bad when i point that out, of course not, and i fear that more than once i have done so. it was such a terrible close call.. one day difference and she would have been alive. that doesnt belittle anyone's loss earlier in pregnancy though. i would have been just as heartbroken to lose her earlier.

    tonight i went to church with a friend because her pastor was preaching on suffering, and it was a truly awesome message. but afterwards she wanted to introduce me to the pastor directly, and i know he got the wrong story because he said "how many weeks were you when you miscarried?" i wanted to scream. that word hit me like a block of ice. i didnt miscarry! i was 39 weeks! and i had a picture of her with me and showed him. my perfect little newborn. he wasnt trying to be insensitive, i think someone just told him there was a woman waiting for him that "lost her baby during pregnancy."

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  6. HI catherine - thankyou for this post. I agree that sometimes it feels like people like to know if it was an earlier gestation loss because it enables them to somehow kind of dismiss it or lessen it or expect you will be over it. My two losses were early in the pregnancies but nonetheless devastating. And while i can't pretend to fully understand your loss or the loss of others with different circumstances, I agree with Sally - the love is the same and we all experience loss or grief in one form or another. I think you are wonderful being able to articulate this all so beautifully. Hugs for you and thinking of both your girls xxxxx

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  7. So beautifully put, and so very true. My Ezra died at 34 weeks, and often I find myself saying 'he died at nearly full term' rather than have to navigate the treacherous waters of the grief variable index. Now that I am nearly 6 months pregnant again, people say the stupidist things -- after responding honestly about whether this is my first, someone said to me yesterday 'oh, you must be so happy to have made it to 6 months, you're in the clear'. I quickly corrected and explained there just is no safe time in pregnancy.
    Just a beautiful post - You are such an amazing mama to both your girls.

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  8. Beautiful Catherine....but of course the other key factor in this societal 'grieving allowance' is if you have other living children. If you have other living children, take the square root of your grieving allowance, and then people want you to move on.

    A a recent OB appointment the nurse went on and on about my 'fetal demise'. I was too stunned to speak at the time for fear my hand my leave the safe confines of my lap and smack her, as Rose wasn't a 'fetal demise', she was my baby, my beloved child. So clearly I'm already WAY outside of my grief allowance - cause this nurse was of the opinion that I should be 'moved on' from my 'fetal demise' (as if it was nothing). I'll be sure to not deal with her again.


    As an aside - I know four women who've had 'preemies'. A 24 1/2 weeker, a set of 26 week twins, a set of 30 week twins and a 31 week singleton with severe iugr....all those babies lived and have thrived. Rose was over 38 weeks and she died. The concept of viability to me now means when I have the living baby in my arms at home and thriving. That is my new viability reality.

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  9. Thanks again for your post, Catherine.

    Two weeks after giving birth to Magnus, my 24w son who lived, was born then died, my family doc told me that she had four miscarriages. She told me that I should put my grief in it's place and move on. Nice!

    I've also had people compiment me on 'looking good' and I would rather look any other way if it meant that I could have my son back.

    Some things just aren't consolations for what we want the very most.

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  10. Tracey - you are absolutely right about having other living children. I have added your comment to my original post. I'm sorry about the nurse that you spoke to, it is terms like 'fetal demise' that really make me angry.

    I don't know if you'll come back to read this but I would love to carry on following your blog. I see you've gone private and I don't have any other way to contact you other than here! Completely understand if you would rather not but thought it was worth asking. xo

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  11. Catherine - I stopped blogging. I was a two week blogger and then a quitter. How's that for commitment? ;) I may start again (thus making it private vs. deleting) - and I'll be sure to let you know.

    But things are well - another check-in next week (13ish weeks), so we are hopeful that things continue to go well....deep breaths everyday...

    xoxo

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  12. Love the graph, being a visual learner and all ;)

    How does that saying go-"Do not judge me until you have walked a mile in my shoes"?

    Not that Id wish the walk after losing a baby on anyone.

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  13. Catherine, thank you for adding tracey's comment about having other children to your original post. This is something I feel so guilty about.
    I have four older children, and while I'm eternally grateful for them, and so happy that I have four pairs of arms available for hugs, I should have five.
    Yesterday I attended our local hospital's annual baby memorial service, and felt very uncomfortable taking up a whole bench with my family when there were many couples there with no children at all.
    I wondered how they felt about us.
    I also often wonder if people think we were too greedy to even attempt to have a fifth baby...what would they think if they knew we were hoping for a sixth?
    Sorry, I've kinda gone off topic a bit, but great point Tracey.
    x

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  14. Catherine, if I could print this up and give it to every insensitive person, I would. It is a perfect post. It says so much that I would have loved to have been put into words to several people who come to mind right away.

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  15. You are an extremely clever and thoughtful person and I love a good graph!

    This post is just spot on Catherine. I wish I had something clever to add a la Tracey, but between you you've said it all. xx

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  16. Such a stunning post, Catherine. One of many. And yes, I'm a sucker for a graph.

    So many points I want to touch on, from you and the other amazing women here. This from Jeanette nearly knocked me out:

    "it was good to see me "back to my old self", it took all my strength not to punch her very hard.
    Just because I'm, up, dressed and functioning, doesn't mean I'm ok, certainly not "back to my old self", she's gone forever."

    Because I'm starting to get those remarks and while I know they are well-meaning (I hope. I assume. I WANT to believe...), there is something so selfish about it. And untrue. Someone saying you are back to your "old self" might as well be saying, "oh good, you're not all weepy today, god, THAT was a handful. I'm glad I don't need to tiptoe around your grief anymore..."

    I think that people use the word "miscarriage" because it something that seems like it was supposed to happen - a mis-take. It allows them to comment on the loss of a child from a distance. It is much, much harder to say, "I am sorry your baby died."

    I wonder sometimes why I need to qualify the death of our girls. Why I need to correct people when they say "miscarriage." No. Our babies were born. Hearts were beating. And I think your chart contains the answer. Because then my grief was somehow justified, deemed more appropriate by polite society.

    I think it's taken this long for a graph to find its way on to your blog Catherine, because loss is such a nebulous thing. The only way the chart works is to gauge the level of outside acceptability. Because, as most of us know all too well, add another variable to the graph to signify "actual" grieving and it no longer becomes neat or succinct.

    Another beautiful and moving post, C.

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  17. I love your graph, the stark contrast of it's impossibly neat and straight lines with the messiness of grief.

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  18. I understand this post so well it hurts. It hurts to remember how much this used to upset me. And, well, truthfully, it still does a little.

    The sad thing is that six years later I have had to let this go. I have had to learn to be at peace with the fact that so many people will never understand our experience of losing our babies. They will never know how real they were, how whole they were, how beautiful they were. They will never think anything more than we just "lost them." Something that conjures up images of magic wands and fairy dust- as though they just disappeared.

    There are a lot of things I have had to learn to be at peace with... But, it takes time. And some things are still very, very hard.

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  19. This post is so true, graph and all. You have really hit the nail on the head here. I wish people were more understanding of what we go through, of the pain we feel, and the realness of it all. But I guess the only way anyone can ever really understand is to live it. And that is not something I would wish on anyone. xx

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  20. First, the graph was a good touch to the post. It is all very true.

    I have struggled with much of this out in the world. Little One has always been considered "a miscarriage" at 16 weeks. The doctors saw it that way, family, and others. At 16 weeks, you are given virtually no room for grief at all, or so I experienced. I respond to outsiders (non babylost mamas) that I "lost my son in pregnancy" and really won't answer any other questions. I guess no one knows that yes indeed, you give birth at 16 weeks though your baby is only 5oz. You dialte, your water breaks, etc. the same things that happens in a live birth of a full term baby.

    Having had a first trimester loss, a 2nd trimester loss, and a living child, I have been through it all and a loss at any point sucks. Plain sucks.

    Beautiful post.

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  21. It wasn't until after Cayden died that I really let myself grieve the baby I miscarried at 8 weeks a few months before Cayd was conceived. Such different experiences, but both so tragic.

    I love this line Catherine: "This particular person, who is so special to you, doesn't count for anything with us?"

    I hate that some people think it's okay to believe this. Much love to you.

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  22. Great post - thought-provoking.

    It's funny that society, as Tracey observed, wants you to move along faster if you have surviving children. I think that having a surviving newborn to care for after Rosemary's death just delayed my response. I went into robot-mode to get her through her first year and it didn't hit me that I was completely floored by grief until months later. Two years+ later I'm still working it out.

    I wonder if it's ok to start the clock on one's grief later if you're too busy to grieve at the appropriate time.

    A side note on other losses--I've lost a parent, a child (who breathed and lived), and a 9-week fetus (who didn't breathe and live). Rosemary's death has been the hardest loss for me but the others were no stroll in the park either. All three of them make other people uncomfortable. The only people who seem to get it are people who have had a similar loss--though an astonishing number of folks like to compare the loss of my family members to dead pets...why?

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  23. I often feel that my grief is somehow less than other people's grief -- less intense, less deep, less difficult. Which, I suppose, is something I'm grateful for. But still.

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  24. You're exactly right. And very well put. Heck, my babies were 3 days shy of the 20 week mark dividing stillbirth from miscarriage - that bothered me for so, so long, but now I just call it (pardon me!) bullshit. My process and experience would have been no different 3 days later. I gave birth to my babies. They were born still.

    Interestingly, since losing our twins, I've become more compassionate toward people in general, I think, including those who have very early miscarriages. I think some people thought the opposite would happen. They'll tell me about a miscarriage and expect me to shrug my shoulders or something, as if "that's nothing compared to what I went through." No, there is no room for comparing grief. I have never walked in their shoes. But also, its selfish - I give compassion because I so desperately want it in return.

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  25. TOC - That is an interesting concept. I suppose that society doesn't really allow you to stop the clock but there are situations where it is just not possible to grieve in the immediate aftermath. It should be allowed really, some sort of notice stating 'any special allowances that you were going to make to me at this time to be carried forward until I say so . . '
    I don't get the dead pets thing either. Just weird to me.

    Niobe - I've edited again. I missed so many things that I should have included. Shouldn't hit publish so impetuously.

    Bluebird - selfish? Never in a month of Sundays.

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  26. OMG it reminds me of the ridiculous Pritchard scale for poetry in Dead Poet's... as if, right? As if we could possibly quantify something like this? Ugh. Crazy.

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  27. So so so true!!! Oddly- my husband and I were just talking about this! How somehow it was more acceptable to grieve Andrew (though that wasn't even acceptable to some since he never really breathed... etc) than to grieve our 'miscarriage'- and my husband was saying that for him it was so hard not knowing the gender- not being able to give a name- and yet he still needed to grieve so!
    Thinking of you friend!
    Hugs-
    Laura

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  28. So well put, Catherine. You've captured so much. I want to print off your blog and hand it to people!! I've had people say, "OH! He was full-term? No wonder you're sad!" as if I'd be somehow less sad if he were stillborn even weeks earlier. And of course having other living children, well, yes. As the other mother said people then expect you shouldn't be sad you've lost one. So much pain and all of it is valid. (((Hugs)))

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  29. Thank you so much for linking this.

    It's a beautiful post. And yes. Just yes. To it all.

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