wild is the wind

photo by KevinGrahame

On the west coast of New Zealand overlooking the fierceness of the Tasman Sea, the trees growing in the rocky crags of the shoreline jut sideways. The branches on the sea side are barren, twisted. The force of the wind changes their structure, the way their nature demands to grow beaten into submission. The limbs bend permanently off to the side pointing towards the land. "Go this way," they point. "Go away from the brutal sea." They morph from the relentlessness of the coastal wind. Their shape is the shape of the wind. It is the shape of abuse. Sometimes when I think back on how captivating those trees were, how haunting, how few pictures I took of them, yet how often I think of them, sometimes I think that shape is the shape of love.

Let the wind blow through your heart, for wild is the wind.

All the love songs are written about Lucia. All the heartbreak songs. All the songs about loss and want and ache. All of the songs. I want to write about her too, but I can't seem to find the words. I know nothing about Lucy except that she isn't here. And the cadence of her not being here is like the wind beating on me, changing me. I relent. My branches bend over, growing uncomfortably sideways, damaged, impossible. I bend from the love. The love disguised as sadness and grief. Sometimes I get confused by that, thinking that I am bending from the hurt, but it is love that bends me, that points me away from everything else. I look debilitated. I feel debilitated. Until, suddenly, I realize that it has become so much a part of who I am, I am not uncomfortable anymore. And until it became so much a part of who I am, the way I was, unbending and sure of the world, makes no sense anymore.

You're Spring to me, all things to me.

I never thought I’d survive the death of one of my children. That is what I used to say when I would hear a horror story about stillbirth, or infant death. "Oh, I would never survive," I would muse. I thought I would turn into dust and ash and be carried off, a bit of me left everywhere until I was nowhere at all. I'd close my eyes to banish the thought of it. Cross myself. Throw salt over my left shoulder.  Touch wood.  Hold my breath.  Make a wish. Knock on wood.  Throw salt over my shoulder. Whisper on the wind.

Let me fly away with you.

Maybe I really thought I would never survive it, or that is simply all the further I could think of such a scenario. It seemed so horrid, I wouldn't dignify imagining how it would really be. Maybe I said things like that because I thought I was not the kind of person that babies die inside of. I remember that feeling of talking myself out of the anxiety of the stillness. I felt silly for being afraid. I felt silly. I used to think I was a humble person. Confident, perhaps, but humble. Humility, in fact, was my religion. That seemed the key to a spiritual existence. Humility and compassion. Hand in hand. Then I thought I was humble because I lost so much. Before that, I thought I was humble because I didn't think I was the prettiest, smartest or most talented person and that realization didn't floor me. My philosophy of life was simple: "I am not anyone special. And neither are you."

I suppose now I see humility differently. Humility to me is accepting that I am not capable of transcending my humanness. My child died in me not because I am bad, or good, or humble, or arrogant, or I deserved it or didn't deserve it. She died because I am human. I am not a terrible person, just a person. And I am changed by the grief. My branches own the hurt perhaps further are the hurt of simply being human and loving so much.  

Wild is the wind. So wild.

Though I thought I'd never survive my child's death, I survived it. What did I think I would do? Kill myself? Expire from lack of wanting to survive? After living through the death of my child, I realized that surviving isn't the hard part. You can live despite yourself and in spite of yourself. You can punish, abuse, disengage with you, you can cut yourself off from everything. You can try to will life to stop, but it won't. You wake up everyday and remember what happened again. And your arms bend a little more.

It is the thriving that feels impossible. It is the hope that gets choked, the loneliness that settles onto your bones like an old wet wool coat, useless and bulky in its wetness, and uncomfortably heavy. It is the juxtaposition of the old, wet, wool coat, and the wind that blows through your heart. And the wind that blows through the holes in you. Your arms tire. Everything is tired. But you still live.

My love is like the wind.

There is a hole in me that seems bigger than any one person could have ever filled, especially someone so little and dead. The wind blows through her tree this morning, moving the tiny Buddhist bell and the flags that send a prayer off to the corner of the globe. That prayer can never be answered. And still I pray for the impossible--a moment with Lucia again. A moment. One tiny wisp of her. The grief that whirled in me after she died touched all the other grief in me. I can see that now. That is why I am defined by grief now, because we are all defined by grief. I am not special because of that. And neither are you.

I am more beautiful, though, because of Lucia. More beautiful because grief debilitated me until I grew into the shape of grief and into the shape of love. I am sideways and ugly and in that way, I suppose I am beautiful.

For we're creatures of the wind and wild is the wind.

What ways has grief shaped you? What parts of you feel leafless and empty? What parts of you are heartier? What ways have you grown more beautiful because of your grief? In what ways have you thrived? In what ways have you merely survived?

Glasses, clouds, sea monsters

I don't think I was ever an optimist, but looking back I was naive.  Young.  Inexperienced in the ways of bad things.

No, I was a chump.  

Looking back at those photos of me holding Maddy in the delivery room, before I knew anything was wrong, when I thought I had achieved Nirvana and arrived at heaven on earth, I realize now I was just a chump.  I was totally had.  I bought into the program and surrendered to the joy like a complete asshole.  If Ashton Kutcher jumped out from behind an isolette in the NICU and yelled, "Punk'd!" the week would have made much more sense.

You see, despite my rational half telling myself to remain a cautious optimist, I still banked happiness on the future.  I saw good future events ending in, well, goodness.  I looked forward to them because of the way they'd make me feel. I don't do that anymore. I decided after that never to get punk'd again.

After Maddy died, I was certain I would be a pessimist for the rest of my life.  Glass?  Half empty?  Shit, it's cracked and leaking, it'll be drained before I even lift it off the counter for a look.  Life clearly was suffering and death and destruction, and the Buddhists and Hobbes and Machiavelli were all right:  One big languishing, cynical wait for Leviathan to swallow our terrible selves whole.  Nothing ever turned out as it should, people are mean, and everything dies.  Not only wasn't I very happy, but I got stuck in the present.  Aren't there people who strive to live in the present?  Are they high?  I could've told them it's not all that, it's very limiting to only be able to plan three days in advance because you're trying not to set your expectations too far out ahead so you won't get hurt.  Not only did I not think my future would turn out, I quit thinking about my future altogether. I got stuck.  Mired.  Afraid of the future.

Like everything else gloom and doomy about grief, this too began to ebb with time.  But not entirely.  I could plan two weeks in advance, and then a month, and now even a few months.  But I still don't assume things will be fine.  I know this is a sore spot for the positive-thinker crowd:  if you think about that future event ending well, and think about it really really hard!  And all the time! and make sure not to let doubt creep in there! it will come true.  You will get the promotion, your bank account will fill, the cancer will evaporate, the kids will get into Harvard.  Really!  But come on, really?  And what happens when all those things don't come true, time after time after time?  I'm not saying you need to think the worst will happen, but maybe a dose of realism now that I know bad shit is real isn't such an unhealthy thing. 

For example:  We went on "vacation" recently, but I really made an attempt not to call it "vacation," which implies relaxation and sleep and ample time for reading and sunning and navel gazing.  I called it, "getting away with my family," which is exactly what it was.  So when the stomach virus swept through us in the waning hours, it didn't ruin the whole thing (in retrospect; at the time, I swore I'd never travel again), nor did I sit around and say, "See?  Bad shit ALWAYS HAPPENS!"  No, it was just one of those things, and I thoroughly enjoyed the first 5-6 days, and ergo nothing got ruined.  

It's a matter perhaps of semantics, and perspective.

I believe there are people who can find small elements of thanks in the bad things that happen to them.  I always thought these people were the sunshine-y always seeing rainbows when there's rain people, but surprisingly, I've become one of those people.  There are times when I hear another one of your stories, or read something in the paper that's just wildly awful, and I stop to reflect on how fortunate I was, with my solid medical community and my loving neighborhood.  Or even the amount of control I had in what at the time seemed to be a situation removed from the tracks and barreling over the cliff.  But I think this is different than being optimistic or even positive:  this is letting a lot of time go by, and being able to stop crying and sighing long enough to reflect.  It's ok if you're not there yet, believe me.  You may be someday, you may never be, and that's ok, too.

I've learned to be happy in retrospect, and even happy in my present.  That's pretty huge, given where I was four years ago:  I can look back on an event or even just a day and say, hey, that was wonderful.  That was really, really lovely.  I'm even able to have fun in my present self, or find joy here and there, ducking in the weeds.  But I still don't play that game of cashing in on a future that's not here yet.  No. Way.

When I was pregnant with my subsequent child, my now one-year old son, I did things much differently.  With Bella and Maddy, I thought the biggest surprise in life was finding out the sex of your child at their birth.  Boy, did Maddy ever prove THAT wrong, there are in fact bigger surprises I discovered.  I never wanted to be surprised again.  With Ale, I had CVS at eleven weeks, and found out the sex because I wanted the only surprise at birth to be whether he lived or not.  I had had it, no more punk'd.  And I live like that now:  I can look ahead, but no surprises.  No jumping out from around the corner, no unmarked flowers, no cakes without my choice of flavor.   I want to know, I want to know as much as possible about what will happen -- good or bad.  Maybe it's a control thing, and a false one at that; I know I can't possibly contain all the surprises in life.  But to the extent I can find out, I will.

I still don't think I'm an optimist, but I don't think I'm a pessimist, either.  As cynical as I am, I did not pour myself a large drink and eschew my child-chauffeuring responsibilities to watch the world implode at 6 p.m. last Saturday.  There's a ways until I meet the Leviathan, I realize now, and some people are actually pretty nice and considerate.   I'm certainly not a positive thinker, but I'm not necessarily a negative one.  The bathroom project we're about to undertake?  That will be an improvement, I'm fairly certain.  I think it's just that I now know exactly the kind of very real surprises life can dole out, whether it's a plumbing stack that needs replaced, or a child born with fatal birth defects.  It's made me older, more wary, informed.  I hate being a chump.

Where do you fall in terms of optimism and pessimism, positive and negative thinking?  Were you always this way, or did thing change with death of your child(ren)?  

Grief, suspended. Grief controlled?

My grandmother died two weeks ago. A few hours shy of two weeks actually.

The phone call from my sister broke time in a way we are all familiar with. It really shouldn't have, probably-- it had been a long time coming. She wasn't well, as a matter of fact she wasn't herself. She had Alzheimer's. But physically she was relatively strong. She'd had bouts of infection and a few other things, any one of which probably could've killed her if not for profound attention her daughters paid to every little change. Some weeks before she died a blood test revealed that she probably had some kind of cancer, but given her condition nobody wanted to put her through invasive tests to figure out exactly what kind it was. Her daughters signed her up with hospice. About six months was their prediction. Even that was hard on the daughters. In the end, her end was a lot gentler than her last several years.

The last several years were awful. Watching a strong person diminish is never easy. Watching a strong person lose themselves, lose their understanding of who surrounds them, lose all their bearings in the world is a particular pain, made worse when you are the caretaker. My mom and my aunt kept trying to relate to their mother, and their mother wasn't there. That made it worse.

My rabbi visited us in the hospital, when I was being induced. My son still in me, we talked about funeral arrangements. She explained the Jewish custom of quick burial by quoting from sacred text: "[y]ou can not be comforted while your dead lie before you." I've thought about this a lot during my grandmother's decline. Removed somewhat from the situation, I could accept a lot earlier than my mom could just how little of the woman we knew remained in the woman my mom was faithfully caring for.

My grandmother, in her time, took care of her own sick and dying mother for many more years than what her daughters ended up doing for her. But my great-grandmother had a stroke and lost her mobility. She was still herself, and so she died when she died. In contrast, I can tell you when my grandmother's body died. I can't tell you when she left, not really. It's been a long time since she recognized anyone. Yet mere weeks before she died, she had a good day when she seemed to know who everyone in the family was. One good hour, really.

So over the course of the last four years, my family had to slowly let go of my grandmother. Expectations, understandings. Memories. Things that bind us together. Bit by bit. Two weeks ago the definitive, indisputable end. Before that? Strange state of suspended grief. Her daughters didn't have their mother anymore. But I don't think they knew how to grieve that, and they didn't really have time for it anyway-- they were her dedicated caretakers, after all.

This story is the opposite of most perinatal death stories. We rarely get any warning, and even those of us who do are never prepared-- we're supposed to be raising them, not burying them. My grandmother had a hard life, full of pain and loss. But she also had a rich life, full of joy and love. She was in her late 70s before her mind started going. My daughter knew her, and even if she doesn't now remember most of their interactions before the onset of the bad part of the disease, she has a sense of her great grandmother. We chose her casket because that color and even the spare details on it was the kind of wood furniture she liked. We knew what she liked. The opposite, you know?

We now know that she realized things were going wrong, and to cope, while she still could, she wrote notes to herself. That makes perfect sense-- too proud to tell anyone, but determined to manage.

My grandmother came to visit us along with my parents and aunt and uncle for Monkey's fifth birthday. That was less than six weeks after A died. While here, she asked to see A's pictures. I now think of that as the very last thing I can confidently say she did as fully herself. After she'd seen them, it seems she let go. Even during that trip, she was not the same after the pictures that she was before. I think she must've written a note to herself about A, about asking for the pictures. Either that or she willed herself to stay fully with it until she did. Task completed, she could let go of the enormous work it took to hold on. (She did not disappear completely after that, but she was less present, and for less time. And for a while after, she remembered A-- she'd talk to my mom about how sad it was.) That's the kind of backbone that defined her. And it took one hell of a disease to be stronger than that.

We took Monkey with us to the funeral and the burial. We didn't take her, less than five years old at the time, with us to A's. She still tells us we were wrong in that decision. She probably always will. She's never been to a funeral, in fact. I think my grandmother's was a sort of a proxy for her. She got to see the casket put in the ground, the kaddish recited, she got to see and hear the dirt hitting the casket-- the hollow sound of finality, of indisputable end. From the safe distance of four plus years and her great-grandmother's eighty three and a half, she could imagine her brother's funeral. The rabbi and the funeral director were incredibly kind to her, and that helped too.

She's perceptive. She gets the difference. She knows great grandmothers die, and it's sad, but it is how life works (though she is not exactly happy about this). Little brothers shouldn't be dying, but hers did, and it's a different kind of pain and grief. And yet, she also gets that sometimes the differences matter very little. We were talking about the different kinds of sad, and that though it is how it is, it is still sad for me that my grandmother died. "It's [my grandma]'s mom" she said, as her eyes got bigger with recognition of the enormity of the loss for someone else. Yes, she was.

Have you encountered death since your child's? How has it been for you?

salad days

Today, we welcome a guest post from Jess at After Iris. In May 2008, Jess' second daughter Iris died while she was in early labour. Jess' insights always turn my head inside out. And by inside out, I mean, I am left laughing, crying, gaping and scratching my head in absolute wonder at her sagacity. Her observations on grief and loss leave me both satisfied and wanting more. —Angie

There was a time before. A once-upon-a-time. 

Babies were born all shouty and pink, noisy little buggers. Mouths, milk-seeking. Toes, tiny and flexed. There’s a type of English bread called Mother’s Pride, which I always thought was fitting – a bun in the oven. I was so proud.

And then things changed. And I changed.

photo by gliuoo

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I think perhaps you are a little more guarded when it comes to other people’s reactions to you, or sometimes you use it as a test, for them and you.

So Holly says. We met almost ten years ago. I directed her in a play. Her character was a nun who kills her secret baby.

It’s hard to define. I’d say you are stronger in your convictions, more opinionated about the things you care deeply about.

That’s Beth. A friend from teenage years. We used to apply red lipstick in the darkened windows of the number fifty bus.

You are more aware of all things “bereave-y” than you were before. I think the experience has strengthened you without becoming hard or fierce. I am comfortable talking in your presence about Iris, because you allow and encourage it. I can’t remember whether you were as open as that before.

Robin, my colleague and a dear friend. Don’t I seem nice through his eyes? Good in my grief, certainly. I wish I really was that way. But I know about the times I raged inside at other people’s petty problems.  ‘Boyfriend trouble? Yeah, it’s tough. But not like PUSHING A DEAD BABY OUT OF YOUR VAGINA.’ Not so nice.

I have noticed two things. One would be the heightened emotions you now show. Sometimes huge sadness but also joy, anger, frustration... they seem to be nearer the surface now. The other would be your drive and determination to do stuff. Where before I think you were content to drift along, now you seem to be more focused and less inclined to let things pass by.

My boss, Alan. Yes, I asked my boss. He’s lovely. We weep every year during my annual appraisal.

No. You have not changed at all.

Carol. My opposite in every way. Yet perhaps she knows me best of all, and I am as green as I ever was.

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I’ve spent three years chewing away at Iris' death, and birth. Chewed myself up. Chewed on my knuckles in grief; blood on my teeth. Trying to get to the bone; the barest boniest bit of my truth, after Iris. I grieved for myself, before. Mother’s pride, baked blind. I grieved for the woman who was so sure of shouty babies. But perhaps I haven’t changed. Or perhaps I shouldn’t grieve that past-me, passed over. She doesn’t seem to be missed by anyone else. And maybe she never left.

Do other people tell you you’ve changed, following the death of your baby or babies? What do you think they see now? Do you care?

tempting fate

Sometimes, when I am holding my husband in bed, I worry that lightning will strike us. In those moments when we are so intensely in love, so happy together—still, despite our loss—I think we are asking for trouble. I expect a tree limb to crash through the roof of our bedroom right then. I picture a horrible cancer suddenly taking hold of one of our organs just as I am kissing him. It scares me. So I end the kiss, I pull away, thinking crazily that this might save our lives.

The same terror runs through my body sometimes when we put Lilly to bed. Will this be the night that the dryer lint catches fire? Will she wake with meningitis in the morning? What if the tree limb falls on her bed instead of ours? What if something happens to Brian, and she is taken away from me?

I love my husband. I love my stepdaughter. I don’t want whoever is running things "up there" to see the unbroken parts of my life, for fear they will be broken too. So I have become superstitious.

photo by winthrowBlythe. That's how I was before the death of my baby. Even having seen my parents’ long and bitter divorce, my own quick and dirty divorce, a series of unsuccessful career starts, a few personal tragedies among those I love, I still felt immune, protected, special. I still didn’t know. You know?

It’s probably for the best that I had my bubble burst. Nothing about my daughter’s death is for anybody’s good, but at some point I did need to come down to earth. To learn suffering, compassion, humility, and my own unspecialness. I hope I am less of a brat now. And moments of happiness have become so dearly precious to me. The people I love, so much more valuable.

I worry that they will be taken away from me. What if this lesson in humility does not have me on my knees enough? (Lessons in humility don’t really make me humble. They make me humiliated, which makes me mad.) What if I haven’t been sufficiently broken yet? What if there is more to "learn"?

Feeling happiness is a dangerous prospect these days. I used to avoid it, because really, who wants any of that when your baby is dead? But it has crept in. It has persisted. If I claim it, will someone see and take it away from me? No, no, that's not for you. Not any more. Should I love in secret, to protect the objects of my affection?

Shining and contented moments used to make me feel in tune with and supported by the Universe. Now I’m not sure the Universe is on my side.  Now when I feel happy, I feel it defiantly. My burning love for my man, my stepdaughter, my gorgeous little nieces and nephews—it hurts. It could break my heart. I think out into space, Please, don’t take them away from me. Or sometimes, Screw you, Fate. We are still here. Then I hush myself. I don't want to attract attention.

Maybe it is safer to pull away from happiness, safer not to chase it.  But this summer my husband and I will don wax wings and try to fly to the sun: we will do IVF. Fate will probably be too tempted by this. We should keep our dreams small and quiet, but I’m angry, as well as scared, and not ready to give in. My wings will likely melt right off. My husband? He thinks we’ll soar, and that’s fine with me as long as he doesn’t say it too loudly and maybe throws a pinch of salt over his shoulder, too.

* * * * *

What is your relationship to happy moments (or the future prospect of them) these days? Do you have any quirky habits (of thought or action) that help you to cultivate a sense of safety in the world since your loss(es)?

ambivalence

Looking back, I'm not entirely sure how March of Dimes became our cause in the aftermath of Gabriel's death.  Perhaps it was because I had supported them before, perhaps it was because of the research they support and several friends with now-thriving preemies.  Possibly it was because it was giant, far-reaching, recognizable, had to do with babies and was easy to explain.  And of course, there hasn't been an organization devoted to helping families suffering from premature birth before viability due to malpractice and bad luck; not that I've found yet anyway.

There certainly was a drive that both my husband and I felt to do something, anything that could be in Gabe's name, in his memory, in his honor.  Something that might emphasize his mark on the world, his importance to more than just the pair of us, some way to ensure that his very brief life was not forgotten.  A vague feeling that if we could do some good, then it somehow made his death – not ok, never ok – but better?  More palatable?  More bearable?  I’m not sure how the logic works, if it is present at all, but there is a visceral need to drag meaning and goodness out of the senselessness and personal tragedy of losing our son.

So immediate and necessary was that need that I now wonder if it wasn’t simply that March of Dimes was there.  We began donating, twice a year, on his due date and his birthdate.  We asked others who remembered him to do the same.  It was easy, and if it didn’t vanquish the need to cement Gabriel’s legacy, well, would anything?  I rather think it’s a lifelong struggle to remind others that I have a son, that he mattered and continues to matter.

I think, though, that what happened next was natural, if not inevitable, given what I’ve just written; I was approached by my new boss (a close former colleague) and asked if I would please, please attend a lunch.  The lunch happened to be a kick-off to the annual March for Babies fundraising, which would culminate in the annual walk, held annually at my workplace.  It’s something that my workplace takes very seriously, and each division is asked to form a team and raise funds and produce walkers.  Because of the changes in leadership in our division, we’d had no team leader for two years and the division badly needed someone, and please, she begged me.

At first, I thought she was asking me because she trusts me, or because of my volubly expressed desire to be of help to her in any way, and despite a rising knot in my stomach at the thought of actually doing something more than simply donating, I tried to pass off a grimace as a smile and reluctantly agreed that free lunch was never a bad thing.  She thanked me, relief written clearly on her face, and said something I regretted hearing:  “Well, I know you and Jason donate every year since . . . well.  Thanks.”

Ah, yes.  Asking the one with the dead premature baby did make a lot of sense.  The pit of dread in my stomach grew, and I questioned whether or not I really wanted to participate after all.  But given that I’d committed myself, I attended that kick-off luncheon, agreed to be the fundraising team captain for my division.  I also threw away, uneaten, the meal that was placed before me just as a child was paraded around at the front of the room; a child of the same age Gabriel would have been, born prematurely but now doing great!  we were hastily reassured.  After that he (naturally a he) was then taken to the back of the room and in the sort of torture that can’t be planned, let down to toddle and coo directly behind my seat.  I listened with half an ear as the roomful of people spoke enthusiastically and proudly about their prior participation and how good it felt to be saving lives, all vaguely reminiscent of an olde-time tent revival.  I wondered if there was anyone else like me struggling to breathe deeply and evenly, fighting back both tears and a panic attack.  The knot of dread was growing into a full-blown ambivalence and I questioned what I’d gotten myself into.

That was only the beginning though; the ambivalence and uncertainty only increased from there.  I felt like a fraud raising funds, as if I were trying to claim prematurity for our issue or blame it for our loss.  While there is no denying that Gabriel’s premature birth was the cause of his death, I have never considered him a premature baby.  There was never any hope of survival from the moment they finally determined me to be in active labor and dilated beyond four centimeters; innovations and advancements made in the last few years are astonishing, but not yet applicable to a twenty-one week old fetus. In a way, I was relieved, then and now, that we were spared the crushing decisions made alongside an incubator containing a tiny, fragile human. We never had to meet neurologists, worry about infection, be unable to touch our son, have to decide when a life hung in the balance what 'quality' really meant. We never had to choose between a shower or sleep and what might be the only time we had with our son; we knew we were down to minutes when the doctor left the room. In many ways, we felt lucky to have escaped the horror of the NICU experience. I never want to diminish that experience by claiming my son was a premature baby, by appearing to take a share of a world to which we never belonged.

Added to that churning internal struggle and growing conviction that this did not feel right to me was a curious request.  The division leader, a very Important Person, had taken an interest in the MoD campaign.  Suddenly, there was pressure to produce a viable fund-raising strategy, to get the word out, to recruit walkers, to do more than simply meet the absurdly low goal that had been set.  I was asked to meet with the division’s communications coordinator to make a plan and she asked why I’d volunteered.  She was relatively new and I didn’t work closely with her, so she didn’t know.  After I delivered a terse, short version of events, saying we were doing this for our son, she teared up.  And then her face lit up and she asked me if I would share my story, because it would really help the fund raising efforts to personalize it.

The ambivalence ratcheted up ten levels and morphed into tension and full-fledged anxiety.  Share my story?  Well, is that so hard?  I do it all the time – here, on my blog, in real life.  Gabriel has never been hidden away.  And yet . . . something felt so wrong about this.  Sharing our story is one thing, selling all we have left of our son for profit is quite another.  But wasn’t I already trading in on him just by invoking his name?  Wasn’t I saying I was doing this for him and asking relatives to donate for him?  And, as my husband pointed out, wasn’t his story what we hoped to help prevent in someone else’s life by working with the March of Dimes?  But it felt so wrong, so very wrong, as if she were asking me to write down how it feels when your heart is ripped out and shattered and your life irrevocably altered for general consumption, or worse, as a fundraising opportunity.

Begrudgingly, I considered it, wondering even then at the disquiet I felt.  Finally I decided that if I were to write the piece, I could draw my boundaries.  I could share his story on my terms.  I wrote a carefully crafted 500 or so words in which I summarized our experience, crystallized our pain and touched on the ways I changed after why I felt it important to participate in things like the March for Babies.  I handed it over, knowing it was my heart on a platter, and it was passed around to relevant people for approval.  The reviews were lovely; it was poignant, concise, moving, sad.  [I] had no idea how powerful a piece it was.  Could [I] maybe make it into an appeal letter?  My heart dropped, and though I tried, I could never do it.  That crossed a personal line for me, one that may have been visible only to me or made sense only to me, but it was beyond my limit. 

After that, whatever enthusiasm had initially appeared in the rush of a new project was buried under the uncertainty, anxiety and a growing resentment that I no longer wished to participate and had no recourse to change my mind. I'd made a commitment, I'd talked myself into believing that I was honoring Gabriel when my instincts were telling me this wasn't right for me. Then came two unexpected things that further derailed me.  First was the Makena debacle.  I refer you to tash’s blog for a good overview of that, if you happened to miss it.  To be raising money for an organization that lobbied to support this sickened me.  That particular drug – 17p – is supposed to be part of treatment protocol in my next pregnancy and may end up unavailable to me.  I was infuriated, hurt, and felt deceived by March of Dimes for their vocal support of something that ultimately turned premature birth into a money-making venture for a big pharmaceutical company.  While MoD subsequently retracted their support, claiming they had no knowledge of KV Pharmaceutical’s intentions, the damage had been done.  I seriously considered pulling out at that point, but my husband remained earnestly eager to continue.  For him, this entire experience was galvanizing, fulfilling.  It was bringing him peace while I was left with an increasingly bitter taste in my mouth.  The second thing was another chemical pregnancy, the third since losing Gabriel.  It left me distracted, angry, hurt and depressed, and there was no energy left to spare for a cause I’d felt only a dubious connection with and that filled me with such unease.  And of course, work was so busy and we were so short-staffed and in the end there were plenty of very reasonable reasons for my lethargy and dispassion.

As the walk drew closer, I grew more morose and short-tempered. It culminated a week ago in a big, ugly cry like I'd not had in months and finally the naked admission that I simply didn't want to go. I didn't want to be surrounded by women and children, by living reminders that we never had the choices or chances. I didn't want to be raising money for a cause that felt so removed from the reality of my loss. I didn't want to make sense or bring meaning out of the senseless and meaningless. I wanted to be there with my own symbol of hope in a prominently pregnant belly, or on my hip, or in my arms or not at all.

As a team leader I was terrible – we did no fundraisers, we never even sent out an email to the entire division. It was thanks only to my husband’s earnest efforts that my division did anywhere near as well as we did (he raised half our funds) and I was plagued with guilt over the poor job I'd done.  I'd invoked my son's name, I'd proclaimed it was in his memory, and I'd done so little.  Surely I could have exerted myself for Gabriel?  Certainly I could have pushed aside the weary, tired litany of longings and regrets and done something brilliant and positive to really mark the importance of his life?  But no, I could not bring myself to try, except for one or two occasions. I posted my piece on my blog, I asked a bunch of people I admire to retweet a link to my fundraising page. I passed my first goal, and set a higher one. All the while, I was trying desperately not to think about how not-right this whole endeavor felt to me. This world of prematurity . . . it wasn't Gabriel's, and it didn't feel like mine.

I tossed these questions over and over, all of last week, leaving me snappish and weepy by turns. I yelled at my husband Sunday morning, tears in my eyes, that I didn't want to go; I didn't want to do this. I drove sullenly, a hollow sort of brittleness surrounding me, and waited for the event to begin with a surliness that probably drove people away from me. Everywhere there were children, people, laughing, greeting each other, taking pictures. We took some as well; in each, I have a pained expression on my face, a clear wish to be done with this.

I did walk, my husband by my side. We didn't talk much of Gabriel, or our hopes for his sibling. We talked about the weather, the improvements to our workplace campus that we hadn't seen. We talked about how good he felt about doing this, and how foreign that felt to me. When we passed the butterfly garden – a grouping of large butterflies of different colors, each bearing a child's name – I couldn't hold back tears; he held my hand until we were beyond the sight of them. I looked forward to the ride home with an eager hope that once it was all behind me, I would finally rest more easily, perhaps feel better about it all.

Instead, the weight of that anxiety and the heaviness of misgiving only feels more settled on me, much like the weight of grief I carry. I am realizing now that the ambivalence is about so many facets of living after his death, and was exaggerated by choosing a cause that I am not fully aligned with.  I think I just sort of went into it ignoring an uncomfortable feeling I should have listened more closely to, and hoping that it would make me feel better about losing Gabriel.  That we'd have done something for him that makes a difference, makes the world a better place.  And while it felt that way to my husband - he really got so much out of this - I came away realizing that not only did this exercise not make me feel better, I don't think any big thing will make me feel better about his death or more connected to him.  I am learning, or maybe remembering, that for me, acknowledging the ways in which I've changed, the small daily things like remembering to appreciate beauty and understanding the fleetingness of life, are the moments in which I feel closest to him and most at peace with this strange after-life, that small actions directly benefiting those in need feel more right than big organizations.  I think it's ok that this wasn't a transforming thing, and that it's ok to feel not great about it. I hope that saying - hey, I tried to honor my son and honestly, it didn't do what I hoped it would for me - may help someone else feel less guilty about their own search for meaning or their own ambivalence.

Have you become active in any similar organizations since losing your child?  Has that been a healing experience for you, or did you experience similar feelings of discomfort or guilt?  What things have you done to honor your children’s lives or memories that have brought you a sense of fulfillment or peace?