Once

Upon a Time: Where stories and other things begin. Mothering after loss. Matters of life and death and everything in between.

Trying Again. Again.

The old green couch in the living room--dog hair from the black lab. Dishevelment. Close to the stereo, but no music plays. The stillest of life--counterpoise the yelling in my head no no no no no and the terrible quiet of coming to terms with my son's condition in utero until it all goes white noise: the loud static, nothing air of the judges' box.

Sitting, those moments before we had lost L. but knew that we would, before he was born, holding on my husband's hand as if we could clasp ourselves together against the truth. Making him promise me that we would try again to get pregnant and bring a child out into the world. Even in my hysteria, I made it a promise that was safe for him to answer, impossible for him to refuse. Promise me yes, but we could decide, later that it wasn't the right thing to do. Promise me yes, but we could look up in a few months and know that the risks of trying again were just too great. Promise me yes, but we might realize that our family was as right as it could be in the aftermath of so much wrong.

Who is that girl on the couch, half wild-eyed, lapsing into a stare at nothing? What exactly was she pleading for?  What did she think she knew?

She thought this of herself: that she had become a kind of expert at loss. Embattled, but also experienced. What was ahead: difficulty, certainly. Likely months of disappointment. Fumbling with OPKs and squinting at purple lines that can take a nuclear physicist to decipher. Anxious, tedious two-week waits. Allow a year of trying, the grief counselor and I reasoned together, to help combat the month in-month out inching up of hope, plummeting despair. Consider the risk, even, of a miscarriage in there before the pregnancy would take that would go on to be our next child. I had lost pregnancies and survived before, hadn't I? I knew what it was to try again. Ascertain the trouble ahead and stick a name to it so as to keep yourself sane when you are, in fact, darkly crazy in loss.

The only way through is forward.

To return to that decision to try again and to start: that's the hard thing.

Or so I thought.

The responsible wait for physical healing and then for test results. Meetings with genetics counselor and geneticist to go back over L's case and make sure there were no genetic markers that might impede a healthy pregnancy in the future. Blood tests for lingering evidence of infection that could have turned development so awry. A phone call checking back with the OB. Sitting down, husband and I, in the RE's office, just for his professional advice. Each says: No promises. But otherwise all clear. Go ahead. Try.

Then the numbers. The tyranny of numbers. Unexpectedly bad FSH results. That devastation. Looking flat and solid into the reality that we might not even have the chance at another child. Cycles that were perfectly on schedule before trying now, suddenly, confirming my body's age and trouble. One cycle runs long for days on end. Next cycle stops far short. No blood. Early blood. Blood into vials at the RE's office. Results that the nurse calls to tell me our specialist brilliant doctor is "perplexed." Only the tests that tell us nothing come back good.

Stop seeing the grief counselor, knowing her well enough to read pity in her eyes. Refuse reality--too full up.

Go here: Acupuncture needles. Bitter herbs. Prayer. Love. Sex. Refusing wine. Sneaking wine. Wheatgrass. Prayers to a panoply of gods and whomevers. Yoga. Reiki from the next door neighbor (her other main patient a man who was burned over 98% of his body. A fellow hopeless). A startled look at the kitchen countertop, with its bottles and concoctions, that shows me smack oblong in the funhouse mirror.

I have become the woman I'm certain I've made fun of and had sometime sworn I'd never be.

Truth? I'd give my last nickel to the snake-oil salesman if only he scribbles Hope and Baby on the list of his elixir's promises.

Off the couch, moving, frantic, can't sit still. Trying to conceive, trying everything, trying to find hope in the air, in the trees, in the mud left from too much winter. To sit down, to slow down, means to stop. And I just can't do that. Not yet.

February 25, 2010 in The Loss Archive, This Body | Permalink | Comments (5) | TrackBack (0)

Aloft

Months ago, that story came across the wires about a six-year-old boy held aloft in a silver balloon, stolen up into the wind, careening across the landscape. You were there, too, caught, like me--leaning close to the computer screen, listening out for the evening news, honing in on that image of that balloon, twisting, bobbing, moving too fast against the bright sky.

For some watching, there was the excitement of the chase. That drama: What would happen next?  For me there was only terror. Even when the child was in the air, I thought, he was already gone. There was no saving him. The reports that came quickly in 10 to 15 minute increments and then slower, stretching across hours, seemed to confirm that the chance of rescue was slim. The balloon flew too high, with the potential to go even higher and drift for days. There were risks to the boy for hypothermia. Officials had no real idea how to arrange a rescue once they put helicopters on the balloon’s trail. Policemen looked sadly into the camera and expressed their doubt and worry. There was little in the way of consolation.

Then the balloon touched down, empty. The boy apparently lost along the way, fallen somewhere down to the ground and--how could you not think?--dead.

But next they found the child, hiding in the attic, and the story switched, almost with denial of what it had been before. Suddenly, he was just a bad boy, hiding from further punishment in the top level of his house. He was here, and alive, hunkered into a cardboard box--simple as that,  it had all been a misunderstanding.

I was frightened to realize how quickly I’d jumped to pronounce this small, hiding boy, who was, indeed, safe in his parent’s house, dead and gone--to have to recognize how comfortable I’ve gotten with the worst case scenario that I don’t even stop anymore to think that there might be an alternative.

How did that happen? How did I become that person?

This way. In the moment, that pitch-black, close your eyes tighter than you ever have because you cannot bear to believe that this is really happening moment, and all the darkest moments afterwards, when I have had to face the loss of a child and when that knowledge has simply been too much. When hope became a country I could no longer visit, I learned to duck down and keep local, fluent in the quieted language and strange customs of grief. When I could not be among people and understand anymore what it means to understand trouble as something outside and beyond. 

Soon enough, the real news turned up, that this was all a hoax concocted by parents searching for limelight and perhaps a better deal on their reality series. We’d been tricked, and it became our job to laugh at ourselves. The “balloon boy” became a national joke, a silly Halloween costume, wisecracks on late-night TV, an item in December’s wasn’t-this-a-wacky-year yearend roundups. In January, we settled back into our daily lives with that story forgotten, one among so many ideas that capture our national interest for moments until we’re onto judging this starlet’s tacky dress or secretly encouraging the rumored divorce of that supercouple.

But not me. I can’t let it go. I am still with that imaginary boy, up in the air, in danger, but also bunkered in the attic, avoiding scrutiny. Seven months after losing L., it feels easier to be suspended and hidden rather than out amongst the world.

It’s not just that the father was back in the news in the past weeks, re-pleading his innocence after claiming guilt. It’s that the essence of that story has stayed with me: as much as I can’t let it go, it will not let go of me--that silver balloon loose and lost in the wind, a small child--a son, no less--carried away and away and away.

It’s the way that that hovering, here but away, keeps reentering the house of my days. On the way out the door to work, I grab a paperback from the stack of recent buys from the thrift store. Once I sneak onto a seat on the Metro in the morning crowd, I open Enduring Love, by Ian McEwan. I’d seen the movie version a few years ago. I remember the gist of the story, a literate thriller where, as in all McEwan books, things go terribly wrong in accidental ways. I remember that there’s an tragedy with a hot-air balloon that starts off a tale of obsession and violence.

But here’s what I’ve forgotten, or didn’t pay ample attention to back then: trapped in the basket of a hot-air balloon is a boy, along with his grandfather. I’m somehow not dissuaded from starting it even though the back cover reminds me clearly that this novel involves tragic accident, and I get caught, against what should be my better judgment, in the opening pages, the rush of plot, the whole wonder of what will happen next coupled, in the same breath, with terror.

Because there it is, again. A balloon, in horrible lift and dodge--a child caught in its relentless push up into places the body does not belong and cannot sustain within. “The child was incapable,” McEwan writes, “and about to be borne away. Two miles to the west were high-voltage power lines. A child alone and needing help. It was my duty to hang on.”

I can’t stop reading, despite the anxiety those pages fill me with. Because with this terrible danger that starts on page one, after a man has died trying to pull the balloon back down to earth out of the troubled air, that it’s not until page thirty-five that the author, almost as afterthought, tells us that the boy survives.

It’s only a book. Just a story. I have to tell myself these things, half shaking to realize how caught I’ve been in the outcome. McEwan, in fact, is doing exactly what he should do to build his plot and capture us into caring about its spinning out into intellectual drama.

I should put the book down, but I don't. It doesn’t help that the couple at the novel’s center are childless, and that the inability to have a child is a deep sadness to the woman, how she “mourn[s] for a phantom child, willed into half-being by frustrated love,” how so many conversations between the couple arrive at, stop, then turn away from the absence of a baby. It doesn’t help that she is smart and capable out in the world but with a central wound few see--that, in fact, he turns her not to usable character but that he gets her right as human. And that he gets other grief right, too--the woman widowed by the inciting accident, for whom conversational exchange becomes so difficult, McEwan recognizing that “suffering the way she was, a social encounter like this must have been like drunk driving--hard to gauge the right conversational speed, easy to overcompensate with reckless steering”

Suddenly, I’m one of those crazy readers speeding and steering and courting danger who sees far too much in a book, taking its lessons far too much to heart. I can’t help that call to duty, to hold on to the rope, to pull that child, against all odds, away from danger, even though the story itself will find him safe and landed, back into the fold of the living. I can’t help but talk about it here, knowing it’s silly--the hoax of the writer. Knowing that the story is long over and that no one else wants to hear about it.  

So this is grief--hating, as this book tells me, as an overtold news story teaches me, as my own life as a grieving mother forces on me, the ruthlessness of gravity.

I am at once in that basket, holding tight to the shivering boy, telling him, lying to him, that it will all be okay; and on the ground, pulling fiercely on the rope in my small weight against the force of the world’s wind, my body raw with hopeless trying; and I am the balloon itself, alternately filling and collapsing with heat and wild air, pulled away from the scramble of people in their lives below. I’m the boy cowering in the attic, fearing more trouble to come down on my head. I’m that boy in Colorado in those moments of implausible belief he was being carried across the wide expanse of open sky, before there’s sureness he’s careening into catastrophe. I’m an invented balloon, silver and gleaming, catching the hard glint of sun in its unapproachable, sure rise, but then, in the next shadow, showing its handmade seams, the way it doesn’t fit together, and like any story people no longer want to hear--its inability to hold the true weight of a life. I am the impending dropping down of loss, coming but not yet arrived.

Because I am still trying for it all not to be true.

Never mind that I’m stalwart in my ability to face the truth. I know it in the deepest of bone and softest recess of my inner brain. All of it I know through its relentless presence: how that empty in my belly afterwards will follow me always. How I held a dead child in my hands, beautiful as he was to me, and could do nothing to make him whole and healthy or bring him into this world in any measure of real living. The reality of my loss is undeniable, and I have learned all the proper names to call it.

But to be drawn back, somehow, to the before, where yes, the danger had already begun, but when and where I still carried my boy with me, safely, away from the danger we’d have to face together. To hover, to be aloft, to be full--to go back to the parts of the story where we are hidden and safe, where we are one, where the relentless push of people and daily life poses no threat. That's an equal want to the weight of the so-called truth, bearing its own imperatives in bones and brain.

I do not write near as much as I should, because it takes that grounding down, looking up at the sky and murmuring, behaving as if the catastrophe is outside myself rather than is my self, and it takes contending with the worry that I just tell the same silly story over and over like an old woman struck with dementia.

Give me, instead, of give me, please, the air, those few moments of beautiful and doomed possibility. Give me, so that I can dwell there, even if only for mere moment, the tiny safe passages in the secret places of the world where I’m accountable to no one but the boy I am still trying, every day, to save.

 

February 15, 2010 in Between the covers, Grieving, TFMR, The Loss Archive | Permalink | Comments (2) | TrackBack (0)

Brought to You by the Folks at We Don't Need Health Care Reform, Incorporated

So

in order to discuss the testing results with the genetics counselor we met with before L. was born, there's a sadly usual, these days, tale of woe. I'm not even all that angry, because I've been overwhelmed by how awful other women have been treated by their insurance companies in times of terrible grief. I should count my blessings that the insurance company and the hospital managed to work out their differences over the $7,500 bill we'd been charged in triplicate, after one phone call of complaint. But still, but still. Permit me one moment of disbelieving frustration. Yesterday and today have involved this series of perplexing events:

1. Called the insurance company to straighten out whether we need a new referral (we do) even though we have a pre-existing relationship with this practitioner and had a previous referral (doesn't matter)

2. Was told I'd need a referral from my primary-care physician, rather than my OB, because I am no longer pregnant (thanks for that one, guys. Really appreciate the zinger served along with the illogical reasoning on that one)

3. Called my primary-care physician, who will not give referrals without seeing patients. And while I'm sympathetic to the thinking behind this policy, in essence, there's nothing here a phone call wouldn't handle (and yes, I asked about that)

4. Will be carting all the way across town this afternoon to sit on crinkly paper in a room where germy people have been and talk to a doctor who has no history with any of these events, to get a referral for explaining tests that have already been done, with a counselor we've already met with

5. (which means, of course, having to explain the whole story to this doctor from the beginning, as if the days weren't hard enough. She's an excellent dr.; it's not that. It's that every time I have to tell the whole story, I feel like I need to sleep four days afterwards, because it takes me right back to the center of that pain.)

6. Because it's really good for your health to have to go through all kinds of unnecessary steps and have to fight for your right to the care you pay for every month (handsomely, I might add).

7. And damn, I was so looking forward to scamming the insurance company by sneaking in to see a specialist (because seeing a genetics counselor is just so much fun). And getting all those great drugs a genetics counselor will give you. Because, you know, they're all cool like that. 

Grrrrrrrrr.

October 08, 2009 in Health "Care", TFMR, The Loss Archive | Permalink | Comments (6) | TrackBack (0)

Back to Normal

I go to class. I stand in front of my students. I open the book I’ve assigned, read aloud, “I wasn’t scared; I was just somebody else, a stranger, and my whole life was a haunted life, the life of a ghost.” I teach them; I try hard to be bright and cheery every day.  They don’t know.

I go to the grocery store. I buy everything on my list. I add an extra bottle of wine and a box of chocolate chip cookies, in need of comfort anywhere I can get it. The cashier asks how I’m doing today. I smile and say, “Good. And you?” She doesn’t know.

The writer I knew years ago, who’s gotten back in touch, and to whom I just can’t seem to finish the letter to tell him about our summer, finds me on Twitter. If he reads back on those pages, he’ll see the mention of tears and milk and blood and, before that, of an angry day in my pregnancy, back in those brief, stupid moments I thought it was safe to break down the lines between my real life and my loss life and my life in possibility. If he only reads forward, for the time being, he doesn’t know.

Back a month ago, I go out to lunch with my dear friend H. She knows. But I’m trying to be brave and show that I’m handling everything just fine. Five minutes within being seated, the people next to us start up the small talk: “She had to go into labor and then had to have a C-section. It was just the worst.” I sit and I sit, holding it together, staring hard at the menu, telling myself the conversation will pass onto other things. It doesn’t. It just doesn’t. They’re just making what they think is harmless lunchtime conversation on a subject they’ve stumbled onto that keeps them talking in common; it’s not their fault, I tell myself, that they don’t know.

They ramp up stories of everyone each of them knows who’s ever had something unexpected happen at birth, but all of their stories end up perfectly fine. I am up out of my chair and in the restaurant bathroom, doubled over and sobbing. H. finds me, asks whether I’m okay. I tell her about the table; she asks whether we should leave. I say I just need a moment to catch my breath (because that’s exactly how it feels--like all the air within has been knocked clean out, with me gone caved in and empty). She tells me to take my time and come when I’m ready. When I rejoin her, the waiter has moved us to another table. I imagine H. has handled this with grace and minimal fuss. The waiter must think I’m just persnickety or one of those women doomed to complain through the whole meal. He is overly solicitous in that way that he thinks nothing real is wrong. How very much he doesn’t know.

This past Saturday, I’ve said yes, I’ll come to a party, My husband is out of town. I shower, wash and dry my hair. I get dressed and put on lipstick. I think it might actually be fun to meet a new person or two. I remember back years ago about how a party would mean a quick chance to flirt with impunity. But then I realize I can hardly remember that girl. I look at myself in the mirror, know I need to do something about my shaggy hair, see the wrinkles that have suddenly appeared stronger at the corners of my eyes since E’s birth and death. I look down at my jeans, tighter than usual because I can’t shed the pregnancy weight (see wine and cookies mentioned above). I know, suddenly, I have nothing interesting to say and that I can’t possibly have the energy to go. I pre-imagine all the conversations that have the power to blindside me from the slightest mention. I can’t imagine why anyone new would want to talk to me. I consider staying home. With great relief but a dose of sadness, too, I don’t go, knowing it would mean being caught in a house full of people who do not know.

I screw up my courage on Sunday, because my daughter has dragged out the yoga mat and pointed to it, pleadingly, and take her back to toddler yoga class, where I haven’t been since I was pregnant. The woman who’s due on Halloween, just a week from my former due date, laughs when we’re asked to crawl on the floor like snakes, along with our children, and points to her belly. She doesn’t know.

The yoga teacher asks all the children for the news in their lives. “Do you have a new brother or sister?” she asks one. She knew, back in June, that I was pregnant, but she’s clearly forgotten. The horribleness of this moment for me, watching as this other girl just about the same age as my daughter, sweetly  nodding about her new sister, she doesn’t know. When it comes our turn, the teacher asks, “And what’s your news?” I do not say to the room, for obvious reasons, “Squiggle was going to have a new sibling, too. But then things went so wrong. And then he died. So she both has and doesn't have a brother.” No one in the room knows but me.

When class is over, the other studio spills out, too--the prenatal class, it turns out. The teacher chats with one of her students in the hallway, and they commiserate about how awfully your feet can swell in the later months. My daughter takes forever to put on her shoes, her tiny, precise feet, long enough for me to bite hard enough into my lip, long enough that biting stops working and I can’t keep the tears from coming, long enough for the hallway conversation to end and for the teacher to turn and tell me my daughter reminds me of hers, and for her to take a second look at my messy, wet face and, from her expression, start to ask why, but then stop and hurry away. She doesn’t know.

We drive by the farmer’s market on my way home. My eye catches sight of a former coworker, whom I know to have had a terrible row with fertility, and whom I last saw at that very market months ago, when she told me of her pregnancy. Back then, I hugged her hard, so happy for her, wished her well on that test, told her I was certain it would all go well for her. I didn’t tell her I was pregnant at that same time, due for that same test that week. It felt wrong, to step on her happiness like that, with so much trouble getting pregnant in the first place (something I well understood). And there she was, poised at the edge of the market, so pregnant, exactly as I would have been--what are the odds of her, in that exact spot at that exact time, so visible, just as I was driving past? So clear she is, positioned there--her hands on her back to support that big belly, her still very pregnant. Me, driving, so empty. I can’t begrudge her that fullness. But still, it’s awful for me to see in a flash where my body would otherwise be. How I’d be holding up my body, supporting it in these last months, expectant. She doesn’t know. Not that my test, like hers, went perfectly well, not that at the next stage, she would continue to be lucky and I would not.   

It’s hard enough to navigate the people who know and are careful around me, to whom I feel some duty to show I’m coping and doing fine. But for some reason it’s the utter strangers and those people who just don’t know, those who have no idea how awful it is in my head and body, still, who bring up for me a real feeling of going utterly crazy. I wish I could feel some measure of pride for the days and times I’m feeling brave and do all the things that normal people do in a normal day. Instead, I feel the dark burden of everything I’m carrying. I hear the yelling that’s going on in the back of my head that wants to come right out in anger to say Do you know how unbelievably hard this is? Picking out peaches? Do you know how hard one stupid decision like that can be?

But I don’t. I behave and I pretend and I muddle through. And I accept the fact that the better job I do at performing normalcy, the worse I feel. Because what’s the option? Because, in the end, how this feels, how it is to try to live day to day, week to week, in so uncertain and wronged a world, no one should have to know.

September 29, 2009 in Grieving, The Loss Archive | Permalink | Comments (6) | TrackBack (0)

When Things Arrive To Tell You That You Are Known

All day I have my head in work. I buckle down with intention. I pull library books off the shelves by the handful. I sit down in a ragged chair at a table in the library. I turn off my wireless and stack those books up like little castles on either side of me, blocking myself in, to make myself write. Why I thought I could avoid thinking by thinking, I don't know. Especially when I take William Stafford into my hands, a poet who has arrived several times in my life to tell me things that I needed to hear--not, mind you, necessarily that I was ready to hear.

Stafford has been dead now 16 years. I wish he weren't. I could tell him thank you for this, in person. For allowing the tears I've otherwise been swallowing back into my throat before they can show from my eyes, for calling me on denying, pretending I was capable. For reminding me, gently, what it means to keep remembering a lost child--my son.

Stillborn

Where a river touches an island
under willows leaning over
I watch the waves and think of you,
    who almost lived.

Stars will rake the sky again
and time will go on, the dark, the cold.
Clouds will race when the wind begins,
    where you almost were.

But while the thunder shakes the world
and the graceful dance and the powerful win,
still faithful, still in thought, I bow,
    little one.

September 10, 2009 in Grieving, The Loss Archive | Permalink | Comments (6) | TrackBack (0)

What We Bury

Over a series of days, a body travels a long way. A man is lost to the world and his family. His body lies in repose, is taken to the church where a funeral mass is conducted, is flown to Washington, DC in the belly of a plane, is carried through the streets of Washington in a motorcade, is taken out, in casket, to the cemetery, and then, is buried close to his brothers, at what we, the living, call at rest. 

Inter, tomb, bury, the grave--these words all make me shiver. The mere thought of memorial sends me into tears, because it means finality in a way I'm not ready for. The ashes in my house, I have here with me, can wait. I can't see ever burying them. But ceremony--that needs to happen. Just not yet. Just not yet.

I follow that other body, so pulled by the news that I have watched closely at every step of that journey. Is it distraction? Or is it a beginning to reckon with the body and rest? With some kind of end?

A brash, old man, red-cheeked and blustery, that wild white hair, fighting at the top of his lungs for the unhealthy and poor and lost and unlucky. A girl swirled down into the water, caught in a car with the windows shut tight. A young man strapped to a stretcher, cross-eyed with pain, his back broken when his plane crashes down and itself breaks into pieces. A man at a graveside, and another, and another--a man too acquainted with burial. The public moments and images get played and replayed; the overused talk of the Curse and Tragedy of one family comes again to the lips of the newscasters. But still these reports, in their compounding and weight, stay with me and make me think, pull me in as not as a bystander but a mourner.

There's a tinge of the salacious for many in the deaths and shootings and illegalities and boozing and missteps that mark one family's history. There's, alternately, the hagiography of this last big, great patriarch and all he did for the little guy. But my ear is attuned to something different. How friends will say that, underneath this outsized public persona, was an essentially private man. How those who worked with him early in their lives and found their own ways in among government and power say such things as "He was so completely human - in a way you don't see very often in someone who had built up so much power. He used that power to lessen the pain and burden on others even when he could not at times lessen his own." How even those who condemned his politics, but who worked alongside him in government, honored his dedication to the work and his convictions.

Here was a person who struggled to balance public and private and whose life was touched by so much loss and grief. How could I not see him as a compatriot? How could I not mourn his loss as a fellow bearer of loss?

Since the announcement of his death, the air has been full of remembrance. I like the way that his death calls up his life, how I trace from from a tell-it-like-it-is feminist to a writer "at the western edge of the American West"--to land on Charles P. Pierce's fine Boston Globe article that addresses Kennedy in complication, recounting both successes and deep failures and all the more important in-betweens that made up the measure of the man. Pierce writes of the ways in which the Senator refused to overlook not just the big ideas of Injustice, but also the silent moments of sorrow in the face of human loss:

On April 27, 2001, a bus carrying band members from the Oak Hill Middle School in Newton overturned on a highway in the Canadian Maritimes. Four children were killed. In Washington, a man whose child went to Oak Hill boarded an airplane in order to hurry home. He saw Edward Kennedy on the plane. The man told him what had happened. That's where he was going, the senator had replied.

At the school, volunteers gathered from all over Newton to help out. Along one wall, they'd hung broad swatches of blank white paper so that the children could express their sorrow and say their goodbyes. On the second afternoon of the melancholy vigil, a volunteer looked out and saw Kennedy, alone in the hallway, no aides around him and no cameras in sight. He was slowly, carefully, reading every single message left by every grieving child.

See him there in the hallway, alone, painfully private, and you see him as he is, the basic material of how he's built his career. You see all he's left behind - the life of metaphor and the life of symbol. He survived them both, until there's just the one life, 70 years on, just as if he'd been named Edward Moore. His tragedies are no greater or lesser than are those of the schoolchildren and their parents - no more important, no longer gilded for public consumption.

He was good with death that day. He's never lost there, not even in the deepest part of that inexhaustible mystery. His compass is true, and his touch never less than fine. And it is, of course, familiar ground.

From this familiar, common ground and into the honored ground of Arlington Cemetery, where he was the third brother of one single family to be buried, where his body lies with 300,000 others and the Tomb of the Unknown. We bury him among the bones of his family, among the remains of citizens and those who served, and with those who were also lost to the world but remain unnamed in and by death.

I do not think this man would begrudge the way he stirs me, how I read too carefully about the pain his brain cancer caused, knowing all too well, given my son's diagnosis, the way that part of the body can cause the hardest betrayal of life. I think he might, had we spoken, listen to me tell him how chose a name for our son from that of another man in public service--a fellow soul--who fought hard against what was wrong. I think he might have taken a moment for L. and grieved with me; I think he would know, and I would know, and there need not be words for that.

Call this imagined connection the delusion of any small person who thinks herself connected to someone larger in the world. But the fact is that laws in place that Kennedy fought for and helped pass, rights he continued to battle for against deep opposition in this country, directly affected my life and those of so many others. Call him a blowhard, a womanizer, a drunkard, a coward, a hypocrite--it wouldn't make sense for me to argue on any of these points because we'd get nowhere, and because it's all beside the point. What remains, and what is individually, powerfully true, is that he sat down and wrote language and stood up for and saw into laws that protected women, that allowed people to go their daily jobs with some measure of protection against terror and violence, and most meaningfully to me, that he provided some easing of the terror that confronted me and other women and their partners who have had to hear the doctors say their terrible news and know that the right thing was the hardest thing in the world a parent would ever have to do, because he made sure that the right thing was even possible in so wrong a world. If I am angry about the ways that politics stood straight up in those hospital rooms and circumscribed what the doctors could and would tell us--and make no mistake, I am angry enough to burn down the world--I also recognize the political realities of this country that may mean the doctors were more frank than they thought they even should be.

I worry that with this man's burial, we bury understanding of the private by those in public life. I worry that we bury the belief that we will ever be listened to--individually, personally, out of our own truths and lives--by those who rule. I'm losing my own power to believe in representation--that what might seem as miniscule grief but that still matters in the larger picture of what it means to live an American life in this era, will have no place in the halls of the Hart Senate Office Building. I worry that I can't name one more senator or representative on either side who fights with such depth of caring for people who are different from himself, those without privilege and access. I worry that, even now, those people shouting in Town Hall meetings from prepared scripts and controlled pr campaigns in the false guise of free speech are already winning, dancing as they do on this new grave, only to end in guaranteeing more pain. And what happens when they have to recognize, finally, what they need instead when they are faced with the life-and-death questions as we all inevitably are, that what they've shouted so fervently against, is the only thing thing that could bring about any chance to heal or, when that's not possible, to allow the good death at the center of their own families--I worry for them, because they will have so saddened those of us once not afraid to face the truth of our own grief that we will turn away and refuse, with due cause, to turn back towards one another. 

September 03, 2009 in Grieving, The Loss Archive | Permalink | Comments (1) | TrackBack (0)

Gratitude

Thanks come up from the dark lake where I tread water, to all of you who came here and read, and especially those who wrote comments to say they were listening and cared. You are beautiful swimmers; you teach me there may be such a thing as land. You show me how not to drown.

August 27, 2009 in The Loss Archive | Permalink | Comments (10) | TrackBack (0)

Surveying the Wreckage

In June of this summer, two Metro trains crashed a few miles from my house-- and just two metro stops from the one I use on the Red Line to get into downtown and to work. Friends in this part of town, as I did, were quick to tweet and post subject lines on Facebook about their safety; there came with each one a relief and thankfulness that those you loved were safe and unhurt. When we discovered that some people didn't make it (and my heart is with, even so much more now, those people who did lose loved ones in the crash), we held tighter to those we loved, and thanked ourselves for luck that kept us off that train that day. The whole city jittered for days, feeling the wreckage, the lives lost in the accident, and the waiting up for explanations.

Nothing is back to normal--long waits for trains and sweltering stations. The explanations have been numerous but also contradictory. Human error, machine error, system error. The old tracks hot in the summer's uncompromising heat have done worse than expected in aftermath, with more even delays and problems compiling the damage done.

Metro has now starting using Twitter to inform passengers of trouble. But it forgets to pay attention to the character limit, and the messages come truncated, usually right at the moment of advice for alternate measures. "No line: Due to mechanical difficulties, all the station's entrance escalators are out of service. The street elevator is operational. Shut" one said, absent of context or instruction. Another: "Red Line: Forest Glen station is temporarily closed due to a power outage. Shuttle bus service has been requested. Customers may utilize t." Utilize what? Go where? Powerless.*

It's enough to make you feel like the entire system is falling apart, the city grinding to a halt with nothing working right and everything--setting out into the day, getting anywhere, coming back home, safely--made that much more difficult.

It's not as if I don't already feel like the whole world has collapsed. A dazed wandering through a broken landscape.

It's not as if I don't already hate the way news of what went wrong only comes in shards from some whole I can't possibly put together. These broken bits of news come from different quadrants of town, all of them incomplete, all of them about horrible danger and wreckage and death. We are the family, this time, that got the most horrible of news.

The radiologist's report from Children's Hospital in Northeast DC, after a suspicious, small cyst on the brain at the 20-week ultrasound called for a more detailed ultrasound and an MRI, which revealed that whole structures of the brain were missing and the left hemisphere was in a terrible, terrible shape. (It is too awful, right now, to write about to supply the medical details, those tell-us-nothing names of conditions that may or may not have played a role. Ten or so possible diagnoses are listed here and there in the report with nothing conclusive offered.) The explanations we received at the time of the MRI first from the radiologist and then from the genetics counselor and the geneticist of how very serious and severe the problem, that thought they could not name a diagnosis, they could all agree that there was no hope for this child, even though the condition might not be "lethal," to truly live. Then the doctor's report to us at the time of the birth at George Washington Hospital, in Northwest DC, that something may have gone wrong with the placenta by his way of explanation. The phone call yesterday, from GW, with the news that the chromosomal testing and microarray had turned up normal, the genetics counselor in a hurry to get off the phone, clipped and bright with the news that nothing genetic was wrong.  

But the whole of it was and IS wrong. So very wrong. Everything that happened to our son is wrong, wrong, wrong. And no one will tell me anything coherent or explain anything to me. Each of these doctors at different outposts with his or her little piece of news but not a one who will put it together. 

Next week I will have to start making phone calls, find some strength that this week I can't fathom ever again having, to become the persistent, nervous, agitated, mean-as-a-snake person until someone with medical knowledge agrees to sit down with me in conversation. Whomever wants to tell me they just don't know, that we're in some outpost of modern medicine where the research just hasn't caught up to our reality, then tell me that face to face. But from there I want to know more certainly what it's not, what they could know, otherwise. I want to know more about what they might even suspect. I want the great and powerful Oz of modern medicine to tell me not that our situation is rare and difficult to diagnose because it doesn't fit neatly into a category but why, exactly, this severe a fetal anomaly can't be recognized definitively. I want to sit there with my pen and paper, dutifully, for a lecture in Brain Development 101 and then be given a detailed update of all the latest research on the fetal brain, from every publication from JAMA to Witch Doctory Quarterly.

I want someone, anyone besides my husband and I to try to put what wreckage we're left with, if not back together, then at least into some medical sense of what was its cause and how we could possibly reckon with it.

Because the whole of my son's body was just that--whole. He was beautiful. If you didn't know how very wrong the brain development had gone underneath that sweet round of a head and skull, you would have thought, perfect. The doctors told us this is, sadly, not uncommon--that the baby can grow physically normally even when there are catastrophic genetic or developmental problems. That what is terribly broken might appear, on the surface, to be completely whole.

I don't wish for something to be wrong with me or my husband--some genetic problem individual or shared that might cause us further heartbreak when we try again to bring a baby into this world. I don't wish that my son's body had looked anything other than the beauty of his own, real shape. Deep down, I know it wouldn't really be a comfort to stick a diagnostic term on his loss. But it compounds the feeling that I am just a person to which bad things happen. That if something bad can happen, it will. The minute you might think things couldn't get worse, that you'd paid your dues, you're a dupe, because there's always something worse ahead.

But most of all, beyond the rampant self-pity I need to have for myself right now, it's for him, for L., I want some explanation. Because for there to be none, for there to be no semblance of cause other than bad chance, it's too horrible to bear, too hard to survive him in a world that can do no better than that for him.  

I am so deeply tired and sad and furious, exhausted in this heat wave in this broken city with this broken body and broken soul. I know it's a risk to write any of this publicly, which only makes me sadder, more tired, more furious. I have my head in my hands, cradling myself, wandering half-dead in this place where my life collided and buckled and tore open, news of what happened coming in and out of my head in snippets of cut-off, half-heard conversation, pushed out of concentration then by the roar of grief that arrives and is followed immediately by dead silence, until I can do nothing, really, besides walk further and turn back and walk its length again and again, measuring the wreckage, knowing it has no recognizable name, recognizing the terror that this is where I now live.


*Incomplete Metro tweets compiled by <http://unsuckdcmetro.blogspot.com/> and highlighted in today's Washington Post.

August 22, 2009 in TFMR, The Loss Archive | Permalink | Comments (4) | TrackBack (0)

Upon Hearing That All the Chromosomal Tests Come Back Normal

We're still left without a diagnosis--without any real explanation for what went wrong.

Sad, angry, sad, angry. Sad. Sad. Sad.

August 20, 2009 in TFMR, The Loss Archive | Permalink | Comments (6) | TrackBack (0)

Sea of Holes, Sea of Grief

YellowSubmarine-SeaofHoles This space is full of holes. Ridiculous ones, like those black comic dots in Yellow Submarine that turn edgy as they swallow up people and turn them back out, looking for one another, until one among them goes lost.

So much of the story is missing here--the first two pregnancies and those miscarriages. The infertility that preceded them. One or more of the chemical pregnancies. Other, familiar and familial losses over the time this place existed. This space became along the way bound up in writing about the in-betweens and the making of a life, and it did see out the agitated wait of a pregnancy that gave me a living child, whom I do not forget to be thankful for not just every day, but over the course of hours that make up daylight and nighttime and the hour she wakes me from her sleep to call out for me and tell me she's here. She who brings me out into the world when I threaten to go missing, lost in that sea of holes in which it's so easy to slip down and go.

It's a new story that's pulled me under, but one that draws on all the others--one more hole after another, so that it seems there's nothing but loss to our lives. I'm too swallowed myself right now in deep black nothing; writing might help that. I think I have to believe it, as I believe nothing else right now.

After Squiggle, I was pregnant. And then, suddenly, I wasn't.

A son died and born at 22 weeks. Bear with me as I bear him still.  I am coming to understand the word stillborn--the stillness after birth, but also how the mother carries the body before and something much different in the after, the immediate body, and then the ghost child for thereafter. How that will always be in the state of still for me--as in yet, as in what the dictionary tells me is archaic use: steadily; constantly; always.  

Maybe I don't have a right to the word, given why he was born when he was. He was induced, after we received a terrible diagnosis of severe fetal anomaly, with no hope from any of a number of doctors. There are many names for this: termination for medical reasons (TMFR), interrupted pregnancy among them. But there is no doubt I bore him, that he was born. Even if he did not breathe out in this world, he came out into it, and I want him to have some rightful place out here, not in some forgotten way, as if he just disappeared, ended.

Every loss is distinct and terrible in its individual way. Types of losses do have their patterns and shared pains, especially in the early, searing weeks. But after as much loss as I've seen and known--after the infertility (which entails loss, too); the chemical pregnancies; the miscarriages; and this last, late loss; after the death of my father the same week as my second miscarriage; after other losses of family on my husband's side; after the near loss of my brother to despair of deep depression last summer--I  less and less understand the deep divisions we insist upon based on circumstance rather than recognizing how common the afterwards is, and how much we need all of each other there.

Lennon./.McCartney wrote in their song "Fixing. a Hole," a song I'd never considered anything but entertaining, "And when my mind is wandering / There I will go. / And it really doesn't matter if / I'm wrong I'm right / Where I belong I'm right / Where I belong. / Silly people run around they worry me / And never ask me why they don't get past my door. / I'm taking the time for a number of things / That weren't important yesterday / And I still go. / I'm fixing a hole where the rain gets in / And stops my mind from wandering / Where it will go." Suddenly this song strikes me not fun at all, but both sad and determined. I'll admit on the spot to being guilty of misreading, forcing meaning from what I'm going through. But the defense is built in right there: a wrong and a right might be the very self-same thing when the hole in your life is big enough to contain them both.

I'm taking the time for a number of things that weren't important yesterday.

What's important? What matters now in this time when some days it can seem that nothing means anything?

I don't know. I don't even pretend. All I can say is that I'm looking for help in climbing out of the hole I'm in without teetering right down into another one. I'm trying to find one, small place where I can stand and belong. Just don't tell me where that is. Not unless you believe in the common, underground country of the lost. Not unless you've been down here, too. Not unless the day has felt too bright, the world too hard, people too cruel, life too nonsensical.  In the end, that means everyone who dares to call her or himself  human. All of us, some time and then forever after.  

August 19, 2009 in TFMR, The Loss Archive | Permalink | Comments (5) | TrackBack (0)

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