Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.

They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.

Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet. But he has no strings by which he might be pulled up. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only surgeons, and rods.

Rods in his spine. I imagine steel, or rebar, those skinny ridged bars that are laid in concrete, because even concrete isn’t all that strong, even concrete needs extra support, and what are muscles compared to concrete? Even concrete sags, to say nothing of wood and fiber and the things of which dolls and puppets are made, to say nothing of people, made of flesh, made of muscle. This is not reassuring. This does not make me feel better. Muscles, concrete, steel, wood, puppets… this is a grim fairy tale.

I focus on the rods, of course, because they are so visual, so visceral, so evocative of things that are monstrous (Dr Frankenstein and his wires and bits) and things that technological (”we can rebuild him“) and things that are magical (Pinocchio’s stiff, wood-rod arms and legs, made flesh, made malleable, with one wave of a fairy’s wand). I focus on the rods, because they unnerve me, and because they are, in a twisted way, a symbol of some elusive hope. They will hold him up. They will support him. They will be his backbone, now that his God-given backbone has collapsed. They will defy God. They will hold him up, now that God is letting go.

******

His heart is going, too. They have him on medication, the kind of medication that they give to grown-up men, to men who have had heart attacks, to men who fall like thick trees, clutching their chests, lives flashing before their eyes. He is just a boy, and yet his heart is weakening, slowing, limping under the weight of years that he will never see.

I am trying to not think about that, because there are no rods for the heart.

******

The thing about the rods is, they represent, right now, everything that we worry we don’t have, everything that we worry we can’t give. Tanner’s body is failing and growing all at once; he becomes heavier and weaker, weaker and heavier, every day, and my sister struggles, alone, to care for him. To lift him is to lift limp bulk. Dead weight. Dead weight. She can’t do it alone. (What if he can’t die at home? — That can’t happen — But what if? — It can’t — What if?) She tries and she tries, but she is no Blue Fairy, she has no magic wand, only her arms and her back and her determination, and she fights with these, she fights through these, to lift her growing dying boy, and she is getting tired.

My heart breaks for her. My heart breaks for her, across and through and up and down and sometimes I worry that the pieces will shatter such that I won’t be able to put them back together and then where will I be, where will she be? There are no rods for the heart, but sisters can be rods, and I am trying to be hers.

It’s hard. I am not made of steel. And who wants to be, really? We want to be flesh and bone and blood and muscle. Our weakness makes us human. It is because of that weakness that we feel, that we ache, that we thrill. Pinocchio wanted that. Pinocchio did not want the wood, the strings. Pinocchio wanted to be real. Pinocchio yearned to be real.

We are real. Tanner is real. No amount of rods or heart medications or mobility devices can change that, but that means, too, that none of those things will save him.

Being real is precious, but it is sometimes hard to bear.

*******

I say there are no fairies, but that is not quite true, because so many are coming forward to help, to wave magic wands, wands that can’t give Tanner back his muscles, but wands that might give him, give us, strings. Please support these efforts, if you can – they’re outlined on my Tanner page, here, below his life list. (You can also follow updates on what’s happening by following the #TutusForTanner Twitter stream.) We need this magic. We really do.

And if you’re going to be in New York next week – or even if you’re not – will you wear a tutu? (FAQs on tutus at the bottom of this page.) It would be awesome if you would. I’ll be wearing mine all week. I might not be a fairy, but I can certainly do my damnedest to look like one.

There’s a home for the elderly that Emilia and Jasper and I pass every day on our walks to and from preschool and junior kindergarten and ballet lessons and karate. Emilia calls the ladies who live there her ladies – “we need to wave to my ladies, Mommy!” -  and she waves and blows kisses to them when we see them sitting in their enclosed verandah, and, when they come out outside for their daily constitutionals, she stops for chats and hugs. They give her extra candy at Halloween. She thinks that they’re awesome. “Just like Grandma, only not so far away and also they give me candy instead of cake.” Which is an important difference, you know.

The other day, after passing her ladies and dispensing the requisite waves and kisses, Emilia asked this: “why are some grandmas in wheelchairs?”

“Because they’re older, sweetie, and their bodies aren’t working so well anymore, and they can’t walk as much as they used to, so they need help. Wheelchairs help them get around.”

“Are they going to die? Because their bodies aren’t working?”

“Not just yet, I don’t think. But yes, when people get much older, they’re closer to dying.”

“And when their bodies aren’t working they’re closer to dying too?”

This is what you get when death is a semi-regular topic in your household. “Yes, sweetie, when their bodies aren’t working.”

“Is Tanner going to die?”

Ah. Ugh.

“Because he’s in a wheelchair, and his body isn’t working. Is he going to die, Mommy?”

It’s moments like these that one wishes, fervently, that a meteor would blast out of the sky or a unicorn would leap out from behind a tree or that a team of nude marathoners would streak by on the street because, seriously, flapping genitals and shooting stars and beasts of myth and legend would be easier to account for than the fact that one’s child’s much-loved cousin is dying.

To say that I chose my words carefully is dramatic understatement. “He is dying, honey. Not right now, though.”

“When?”

“We don’t know.” I clutched her hand and prayed for unicorns. “We don’t know.”

“Well, when he dies I need him to take a letter to Grandpa. I’ll write one for him, too, but there’s one I need to send to Grandpa and you said that he doesn’t have a mailbox so someone needs to take it to him. Can we phone Tanner and ask him if he’ll do that?”

No unicorns appeared, no meteors blazed through the sky, no nudists ran past us in the street, and when she asked if I was crying, I said no, no, there’s just something in my eye. And then I prayed even harder for unicorns.

******

I sent a letter with my dad when he died. I wrote a letter to him, and asked the funeral director to lay it upon his body when he was cremated. I said secret things, loving things; I gave thanks; I made promises. And I asked him if he wouldn’t mind delivering another letter, a letter to my Grandma, a letter that I had written many, many years before, when she died, and that I had asked him to give to her, a letter that I found, after he died, in one of his secret boxes of letters, a letter that he had kept alongside his suicide notes, a letter that, I think, reminded him of how powerful love and how powerful life and how powerful death and that kept him from fulfilling the his suicide wishes and that kept him tethered to life, and the joy of life, whenever such joy was faint. I asked the funeral director to place that letter upon his body, too, so that he might deliver it to her, because I knew that he’d always intended to, and that he’d be glad.

And so those letters burned with my father’s body, and that they did provided me – still provides me – with some comfort. And him too, I think. I hope.

So. I understand why Emilia wants to write him a letter. I know why she wants Tanner to deliver it. My heart weeps, knowing this.

******

We don’t really talk to Tanner about death, or at least, not about the fact that he’s dying. When my father died, we stumbled around the subject, struggling to frame it in the most positive terms – Grandpa had a good life, Grandpa was so loved, Grandpa will always be with us in our hearts – and to balance the sadness with joy – it’s okay to be sad, because we miss him, but we’re sad because we still love him and will always love him and love never dies and that’s good. That’s good! We threw a birthday party – at the lake, on the beach – for him, in lieu of a memorial, so that there could be balloons and cake and candles, so that the kids, and Tanner especially, would experience the occasion as joyous rather sad, a celebration rather than a goodbye. We called it his last birthday, and Emilia and Jasper and Sophie and Tanner loved it, and even though the wheels of Tanner’s chair got stuck in the sand and seagulls stole some of his cake, he declared it a good day. “This was a good day,” he said, and we all agreed. We saved our tears for later.

My mom and discussed at length whether we were wrong to try to contain some of our sadness about Dad’s death in front of Tanner. Wouldn’t we do better, I wondered, to be honest? To let him know that it’s okay to hurt, to be sad about death? So that he knows, when the time comes, that we’ll be hurt and sad for him? My mom disagreed. He knows we’re sad. But he doesn’t need see us in the full bloom of pain.

We still don’t know how to navigate this, this narrow valley between the joy of life and the fear of death, this valley that gets narrower and narrower the further we walk. How do we openly exult in the sunlight without acknowledging the shadows? How do we make plain how precious is each day without acknowledging that we are counting those days? How does one talk about death with a child who is dying? How does one talk about a child dying to the children that love him?

How does one prepare them for the letters?

Emilia cannot make her phone call, of course. We are not making preparations for Tanner’s death, except for all of the ways that we are, all of the ways that we prefer to think of as life, as living, as seizing the days, and so now is not the time. I don’t know that there will be ever be such a time, although perhaps there should be, perhaps there needs to be, and perhaps this angst is just my soul recoiling against what this all means.

I will let her write her letters, and I will save them for her, and when the time is right, maybe – sometime, when we are all holding hands and walking through the narrowing valley – she will ask Tanner to take them and he and she and we will be comforted. Maybe. Maybe.

When I was twelve years old, I was confirmed in the Catholic faith. The priest who  administered the rite of confirmation was a man that I – in the manner of all judgmental twelve year olds who recoil at elders who seem weird and smell bad – did not like, although I did not, at the time, dislike him quite so much as I did the nun who led the weekly catechism classes for young members of the Church. Sister Anne was elderly, and terrifying; she wore her black habit like a suit of armor and carried with her a old wooden ruler, the kind with blade-like metal embedded along the outer edge, and she would menace us with it, sometimes cracking it down upon the side of a desk when some unfortunate child failed to list the Seven Sacraments on command. Sister Anne, my classmates and I decided, was not on the Right Side Of God.

Nobody that frightening could be good, we told each other as we congregated outside during a class break. God wouldn’t stand for it. “She’ll be punished some day,” someone said. “She’ll go to hell.” That thought was somewhat reassuring.

One of the boys disagreed. “God doesn’t seem to care all that much if the priests are scary, so why not the sisters? And the sisters don’t even do anything, not like the priests. He lets them” – he practically spat the word – “be the bosses of the church.” A few of the other boys nodded, and there was much shuffling of feet. Somebody murmured something about creepy being worse than mean, and a couple of the boys moved away from the group. “God doesn’t really care about what those guys do. He just cares that we know the sacraments,” he added. “It sucks.” I had no idea what he was talking about, but I knew that I really didn’t like the way church felt at this parish – a parish that my family had only recently joined, after relocating – at this parish, with this priest and this nun and these scared children, and it seemed to me that if anyone was to blame, it was probably God, who was in charge of the whole business, as I understood it.

(To the little, pitiful God I make my prayer,
The God with the long grey beard
And flowing robe fastened with a hempen girdle
Who sits nodding and muttering on the all-too-big throne
of Heaven.)

Years later, my mother asked me, in a telephone conversation, if I remembered Immaculate Conception, the church where I’d been confirmed, and the priest who’d administered those rites. “I remember the sister who taught my catechism more than him,” I said. “She was evil.”

“Well, not as evil as him, apparently. He’s been accused of abusing some of the boys. You know”  – her voice dropped to a whisper – “sexually.”

And I thought: well. That explains a lot.

I was in my early twenties by then, and it had been a couple of years since I’d been to Mass. Religion was the opiate of the masses, Marx had taught me, and my mother had gone ahead and confirmed what he and Machiavelli and Nietzsche and the kids in the parish of Immaculate Conception – and, we would someday learn, parishes everywhere – already knew: that religion sometimes gives very bad people an opportunity to very bad things, and to get away with it. So I abandoned religion, mostly entirely.

By my early thirties, I was trying to get it back. Or, rather, I was trying to figure out whether I should get it back. I had loved God, and the Catholic Church, for a long time, before the unpleasantness of Immaculate Conception, and, later, my parents’ separation and divorce and mutual crisis of faith (another story entirely, although not one, perhaps, that is mine to tell). I missed them, sometimes. And I worried, sometimes, about how I would navigate the waters of faith once I had my own children; how I would raise them to have faith, if I wasn’t – if we weren’t – at home in the Church. Because I knew that I wanted them to have faith. I just wasn’t sure how, and on what terms. I struggled to figure out how to renegotiate my relationship to God and to faith. And even though I told myself that I wanted to explore faith in all of its forms and consider all options, I have, deep down, always assumed that if I returned to church it would be to return to the Church, the Catholic Church.

I had sort of thought – this year after my father’s death, this year during which we need so much prayer for my nephew – that I might, this year, return for Easter. But then the Catholic Church went ahead and screwed it up and put me off religion, again.

(What a long, long time, dear God, since you set the
stars in their places,
Girded the earth with the sea, and invented the day and
night.
And longer the time since you looked through the blue
window of Heaven
To see your children at play in a garden…)

Allegations of abuse within the Church are not new, of course. But it’s not the allegations – the fact – that abuse occurred (horrifying as that is) that are destroying the remnants of my faith in the Church: it’s the Church’s refusal to take responsibility for it. It’s the Church’s refusal to admit that mistakes were made, that it failed to protect children. It’s the Church’s inability to be humble, to acknowledge that the failure to protect children was a human failure, one made within the Church, by the Church, and that it let God down. That it let us down – that it let the children down – is obvious. That it claims now to have God on its side, that it claims to be on the side of what is good and right, and that it insists that all those who express horror at what it allowed to happen are agents of persecution who are needling them – and by extension, God – with their evil accusations and petty gossip is a travesty of such magnitude that I have trouble, in some moments, even believing that it’s happening. It reads like the plot of a bad conspiracy-themed action novel, wherein robed men give booming speeches about Protecting God’s Church At All Costs while minor henchmen destroy documents and arrange for naysayers to be ‘disappeared.’  Somewhere, Dan Brown is taking notes, furiously.

This is all so appalling, so terrible, because the Church’s refusal to take responsibility for the horrors committed on its watch and its refusal to take responsibility for not addressing and eliminating those horrors when it could makes it seem as though, in the words of my young fellow catechumen, “God doesn’t really care about what those guys do.” When the Church insists that the reputation of the Church is more important than the well-being of innocents, when the Church puts the Church first and insists that this is what God wants it to do, God is on its side, if you criticize it you criticize God and also Jesus and all the saints and probably your grandmother, too, well, it sets itself up as the earthly representative of a God that no good person should want to follow. And in so doing, it destroys faith. Or, at least, it shakes it really violently.

(Now we are all stronger than you and wiser and more
arrogant,
In swift procession we pass you by.
“Who is that marionette nodding and muttering
On the all-too-big throne of Heaven?
Come down from your place, Grey Beard,
We have had enough of your play-acting!”)

The more reasonable explanation, of course (assuming, that is, that you believe in God), is that the Church is not representing God. Or that the men who are running the Church, and the men responsible for not purging the Church of the sickness within it, are neither representing God nor the Church as it was meant to be, whatever that ‘meant to be’ was supposed to be, or whatever. But for Catholics, no such distinction can be easily made. The men of the Church are the Church; the Pope is its head and the direct line to God. And so if we accept, as the Church claims, that God is on their side, then we are left, again, with the lament of my young peer, a young man, a child, who was almost certainly abused: “God doesn’t really care about what those guys do.”

I refuse to believe that. I believe, instead, that the Church has failed, or, rather, that those who defend the institution of the Church over and against its most vulnerable members have failed. I believe that this failure stands as evidence that this Church, which is to say these men, cannot speak for God. That no man – or woman – can speak for God. And that the only possible demonstration of faith in the face of everything that has happened is, I think, to turn away, to refuse to listen, to deny their authority to speak, to disavow belief in their claims about God, their God, and to believe in another God entirely. One that makes sense. One that does care about ‘what those guys do.’

Who or what that God is, I don’t know. And I don’t expect that that God can make any of this better, or make any of this make sense, or do anything to make the ugliness in the world – including the ugliness being propagated by the Church, who would deny the depth and breadth of that ugliness as it pertains to them – anything less than what it is. But I need to believe in a better God, and in a better kind of faith, whatever that means.

(It is centuries since I believed in you,
But today my need of you has come back.
I want no rose-coloured future,
No books of learning, no protestations and denials–
I am sick of this ugly scramble,
I am tired of being pulled about–
O God, I want to sit on your knees
On the all-too-big throne of Heaven,
And fall asleep with my hands tangled in your grey
beard.)*

*(To God The Father, by Katherine Mansfield)

Postscript: I mean no offense to Catholics who are comfortable remaining in the Church. I understand how it is possible to distinguish between the Church – which, as one commenter has noted, might better be identified with the people of Catholic faith, rather than with the Vatican or with the men who claim to speak for God – and its representatives in the Vatican and elsewhere. I’m struggling with that, because I know that the Church is full of good, good people. I just know that, so long as ‘the Church’ – which is to say, again, its representatives – disclaim the proven horrors as their responsibility, and disdain the seriousness of what happened, I cannot imagine supporting it/them in any way.

Today, Tanner goes to the doctor. This is, in itself, nothing new – Tanner sees a lot of doctors – but today, he’s seeing the doctor so that they can start fumbling toward answers to difficult questions concerning when and how and how long. How long until his food needs to blended? Until he needs to be intubated? Until he can no longer sit up on his own? Until his lungs are compromised? Until he cannot breath on his own? Until my sister can no longer look after him on her own? Until, until…

The clock ticks so much louder now. Tanner’s condition is aggressive, relentless: his muscles are breaking down quickly, and as his muscles break down, so does hope.

My sister and I have never spoken in terms of hope. There’s no cure for Duchenne’s Muscular Dystrophy, and even though research goes forward, and clinical trials are run, Tanner has never been eligible for any experimental treatments, largely because of the nature of his genetic condition (he lacks the relevant gene entirely, and most research investigates the mutation of the gene. They refer to the lack of the gene as a deletion, which I’ve always found interesting and sort of sinister, like the gene was there at some point and then was taken away, erased, as if, when God was creating Tanner, he was plugging away at the code, tapping on a keyboard, and then was overtaken by some malicious whim, and hit backspace-backspace-backspace just at the chromosomal locus of Xp21, where the dystrophin gene is created.) So we’ve never spoken of hope, beyond the general hope that whatever years Tanner had would be good years, fulfilling years. But those years are dwindling, too quickly, far more quickly than we ever imagined – most boys with DMD make it at least into their early teens, but it will be a miracle if Tanner makes it to 12 – and the quality of those years is ever-declining, as Tanner loses his ability to do the things that he loves, the things that have sustained him since he lost his mobility, things  like drawing – trains and rocket-ships and dinosaurs – and plucking at a guitar and playing Nintendo.

And holding his own fork, and swallowing his own food, and keeping himself upright in his wheelchair.

We don’t speak about hope.

We speak about what we can do, what we can give him, how we can fill what remains of his life with joy, and we cry as we do, because there is so much that he wants to do – to take his cousins to Disney and introduce them to his favorite characters (that he could not join them at DisneyWorld was hard for him), to take a trip on a train, to swim with dolphins, to meet an astronaut – and so little time and so few resources and, always, the terrifying prospect that, soon, we won’t even be able to give him home, because as his condition worsens the harder it is for Chrissie to look after him on her own – the harder it is to lift him, to move him, to monitor him while trying to survive as a working single mom – and the more likely it seems that he’ll have to go into care and we cannot let that happen, we cannot, but we do not have magic and we do not have fairy godmothers, we have only our hands – and our feet – and our hearts and hearts, for all their worth, cannot work miracles. I don’t think. I don’t know.

All I know is, I have to try. I’m not sure how or by what means, but I have to try.

*I am still doing my 100 Miles For Tanner and I am still wearing tutus, although I am struggling against the inefficiency of it, and, yes, the seeming futility of it – there is hope to be drawn from raising awareness of DMD and helping raise money for research, but these days, for us, are dark, and hope for other boys feels – and this terrible, terrible I know – like such small consolation. But it is, still, hope – and raising awareness in Tanner’s name is something that will provide consolation as the days get darker still – and I will continue to pursue it, and hope that you will join me. But I need to do more, and I need to figure out how to do that, and it’s going to keep me up at night – it does keep me up at night – and so bear with me if I seem a little dark and cranky – darker and crankiER – in the coming days. Virtual hugs – and for Tanner, whatever kinds of prayers or good wishes are comfortable for you – appreciated.

Emilia wants to know what happens when we die. She asks a few times a week, on average, sometimes more, sometimes less, depending on whether or not we’ve spoken about my dad or about Tanner or about dinosaurs. Today, she asked because they’d been talking about the Easter story at school. She wanted to know why Jesus got to fly up into the sky, and Grandpa didn’t.

You burned him, didn’t you? she asks. How could he fly after that?

Explaining death is one thing. Explaining the cremation, the afterlife and Divine resurrection are something else entirely.

We’ve had a lot of these talks. We’ve been having them since my dad died, since she watched me collapse and shatter into a million tiny pieces and wanted to know why. They’ve been good talks, but I fear that they’ve been better for me than they have for her: she has grounded me with her questions, and given me solace with her answers. Because she has her own answers, she pulls them from the sky or the stars or the spirits or her soul and she lays them bare and shares them with me, her stories, the stories that she weaves to make sense of all this mysterious loss, this loss that I can’t explain, lapsed, struggling Catholic that I am, groping for a faith that eludes.

This is why I am failing at this: I have no answers for her. I have no answers, only wishes, only hopes, only deeply held hopes that I ache to grasp with certainty, but which remain – for me, who is grasping at that lost faith, that faith that once upon a time held answers – ephemeral, evanescent, faint. So when she asks me, where did Grandpa go, I say, I think that he went to a place called Heaven, a wonderful place full of love and light where we will someday see him again, and I cry as I say it, because I don’t know for sure, and I wish with every particle of my soul that I did know, that I could know, because I would give anything to know, anything. And she says, in the softest of voices, I know where he is. He’s in his Death House, the one that I made him, and someday we will go there.

– Oh, sweetie…

I know that you think he’s in that box, but he’s not, he’s in his house in Heaven, and we’ll go there someday, and you’ll see, and you’ll know.

And my heart expands, and breaks.

******

My friend Kate, who has known terrible loss, wrote the other day about thumb-wrestling with Death as she prepares for the death of her grandmother. She didn’t like doing it, she said, not least because he has longer thumbs, which I imagine is true. She asked her readers to not leave condolences, but, instead, memories, of their mothers, whose flour-dusted hands wiped tears and whose lipsticked mouths left kiss-marks and whose warm arms were the safest place in either earth or Heaven, so that we might reflect upon motherhood persisting against and beyond death, and I said this:

I have nightmares, about losing my mom, about losing my mom after losing my dad and being left, alone, without them, an orphan, my longest and most deeply held fear. I have nightmares, about fighting with Death, about begging him to stay away.

I’m sorry. I wanted to say something lovely, about my mom’s belly laugh and her twinkling eyes and her perverse imagination, the one that conjures alligators in closets for my daughter to hunt and her ability to bake a lemon cake, right on the spot, just because you asked. But I’ve been having nightmares.

I have been having nightmares, nightmares wherein my dad is already gone and then my mom goes too and I am left to suffer the pain of my greatest fear, the fear that drove me to sleep on their bedroom floor at night, the fear that kept me from sleepover parties and sleep-away camp, the fear of losing them, of being left alone, an orphan. When I was child, my good Catholic parents would comfort me and soothe me and brush my hair from my tear-dampened cheeks and tell me that they would never leave me and I clung to that, even as I knew it to be false, I clung to it, and when I flew west to deal with my father’s death some months ago (an eternity ago, a second ago) I sat in my seat on the plane and cried and cried and cried like the little girl that I had suddenly become again, having flashed backwards in time to that experience of knowing that it would happen and that it would hurt, bad, worse than anything else I could imagine, and then flashed forward again to discover that yes, yes, this is exactly how it feels, and it is terrible, horrible and bad.

And so now I am terrified of having the loss compounded. And I am terrified of communicating – directly or indirectly, intentionally or not – this terror to Emilia, who is too astute, who knows too well when I am sad or afraid and who knows the difference between my sadness and my fear and wants to understand them. But I don’t want her to understand them, I don’t want her to think about losing me, because I want to forestall this pain for her, even as I shudder at its inevitability.

I have nightmares. And my only solace – my lifesaver, my heartsaver, the backbone of my soul armor – is, really, my daughter and her kindergarten theology, her insistence that it will all be okay, that we will all end up at happy place, that she knows this, because we must, because it is true.

I hold her to me tightly, and weep for this, in gratitude and shame.

Are there horses in Heaven? — I don’t know; what do you think? — Did Grandpa love horses? — He did. — Then there are horses there. Someday, I will ride them.

– Me too, sweetie. Me too.

******

This post was inspired by a discussion that was shared between me and some very good friends – Lindsay, Loralee, Julie and Devra – at Mom 2.0. We curled up on the floor of the bedroom of the Four Season’s Presidential Suite during the CheeseBurgHer party and talked spirituality and faith, grief and loss, prayer and meditation and all variety of confused and confusing things. And then Lindsay decided that maybe we should explore some these questions (like the one I’m struggling with above, talking to kids about death) together, on our blogs. So we are. You’re welcome to join in. Leave me a link if you do. Or just speak your piece in the comments. Talking, maybe, will bring enlightenment. Or maybe more confusion. Either/or.

So: how do you talk to your children about death? Do you talk to your children about death? If they ask the hard questions, how do you/will you answer? Or do you, will you, like me, seek their answers, and look for comfort there?

PS: I offer another, somewhat less morose reflection on navigating the waters of loss with children over at Their Bad Mother. Because once I start talking, I can’t stop.

Alexander McQueen died this week. He committed suicide, and he did so, in part, it seems, because of his bereavement over the death of his mother earlier this month.

This is going to sound awful, terrible, extreme, insane… but… I think that I know – maybe, a little bit – how he felt.

I didn’t contemplate suicide when my dad died, but I did contemplate death, closely and more personally than I had ever contemplated it before. As I flew home to deal with his death – as I struggled with finding myself, suddenly, living the nightmare that had haunted my childhood (because this is the horror of losing a parent: you become a child again, and that child’s worst fear comes true, and her source of comfort is gone and she becomes lost and it is the stuff of nightmares and it is bad) – I thought, more than once, I could die now. This plane could plummet to the ground and I could die and it would not be a terrible thing, because at least then I would know, I would go to where he had gone and I would know.

I was aware that this thought was disturbed, that it was wrong, that I did not want to die, but in those moments – and, truthfully, in some moments since – I thought – I have thought – of death differently; I have thought of it more intimately; it has something to do with me, now, and I cannot turn away from it, and if it ever came too close… I don’t know that I would run so fast to escape it.

I’m not suicidal. I can’t stress that enough. My life has been challenging of late, but I still love that life. It is possible to be sad, to be overcome by grief, and to still appreciate joy. I still appreciate joy. My life is filled with joy. But contemplation of death, in light of death, is not necessarily a rejection of life – sometimes, it’s just a yearning for what has been lost, an aching temptation to push aside the curtain to see what’s on the other side, so that one can know, one can see for one’s self, that it’s all okay over there, that it’s good, that it’s somewhere we might want to be. Because how else can we tolerate the loss, without clinging to a belief – no matter how tenuous – that what – who – we have lost has not disappeared but gone somewhere good, somewhere better, somewhere we might go, too. Will go, someday.

I measure every Grief I meet
With narrow, probing, Eyes –
I wonder if It weighs like Mine –
Or has an Easier size…

I wonder if it hurts to live –
And if They have to try –
And whether – could They choose between –
It would not be – to die –

– Emily Dickinson, I measure every Grief I meet.

It does hurt to live, sometimes, when you’ve lost someone you love, someone you needed, someone who was a permanent fixture in your life, someone who you’ve never lived without, someone who was ever-present, eternal, always. It hurts to live because your life becomes suddenly different; the landscape changes so that you no longer quite recognize it; you move forward, disoriented, motion-sick. It doesn’t mean that you give up on life. It does mean that you live in a different relationship with life.

This is complicated for me, because I was convinced, for some time after my father died, that he had committed suicide. When I got the phone call, when I got the news, when I collapsed to the floor, gasping for breath, clutching at my shattered heart, this was my thought: why, Daddy, why? He had come close to suicide many times in the past, but he had promised me that he wouldn’t do it, that he couldn’t bear to hurt us that deeply, and although I believed him, when I got the news of his death, I was convinced: he’d decided that he couldn’t go on, he was in too much pain, it hurt too much to live. And so I spent many hours, many days, trying to reconcile my heart to this, to his pain, to his choice, and I got to a place where I thought that I could understand his choice, and his death having been a choice, something that he wanted, became something that was a source of some comfort.

It was determined, some months later, that he hadn’t taken his own life, but by that point I had come to that conclusion on my own, simply by sorting through the mess of his death and the disorder of his life and by asking painful questions of the people who had found him (had he fallen? where? how? did it seem sudden? oh, my heart) and, of course, by the undiscovery of a note. He would have surely written a note. He had, in fact, written such a note, which I found among his things, but it was from years ago, from a time when I hadn’t even known he was depressed, from a time before he made promises like, I won’t take my own life, sweetheart.

It hurt him to live, but live he did, until he didn’t, and in the aftermath of realizing that he had not taken his own life I was left to figure out how I felt about the fact that his death had not been his choice, that he might not have wanted it, that he might have, in his last moments, been anxious and afraid and worried that I would think that he had taken his own life. It felt bad. Ironic, that. Painful, that.

I’m not sure where I’m going with this. Beyond this, anyway: that when I read that Alexander McQueen had taken his own life, and that he had been grievously bereaved, gutted over the death of his mother, I thought, oh, I know, and I thought, people will say that this is strange and twisted and extreme and maybe it is those things but maybe, also, it’s not. From where I’m standing, it’s not. It’s just where someone might land when it hurts to live. It’s terrible that it ends, in his case, in another death; terrible, terrible. But such terribleness is not necessarily madness.

It’s just grief. The worst grief. Rest in peace, sad boy.

(Closing comments, again, again. I’m so sorry, I keep doing this – it’s not that I don’t love our discussions – it’s just that, I’m still sick, and this is too heavy.)

I think that I’m stuck in the denial stage of grief. It’s not that I deny the fact that my father is dead – his ashes sit in a box on my mantle, surrounded, at the moment, by a few Christmas ornaments and my kids’ picture with Santa and Emilia’s bardo-drawing – it’s that I can’t wrap my head around the fact – is it a fact? – that his death is the end, that his life is over, that I’ll never see or speak with him again. The absoluteness of it all, the finality: I’m having trouble accepting this. I can’t accept this. My heart aches from its stubborn refusal to accept this.

And so I flail about, telling myself stories about ghosts and angels and the afterlife. I struggle to grasp onto my old modes of faith, to the articles of certainty – that there is a heaven, that there are angels, that after death the soul takes flight to a world that is – invisible? eternal? – and thereupon arriving is assured of bliss – that carried me through the deaths of grandparents, acquaintances, beloved pets. I read The Shack while I was at my mom’s last week and found myself unmoved, unconvinced: why should I put in stock in some stranger’s account of his weekend with the Holy Trinity, of the reassurances he received from God and Jesus and the Holy Spirit that his dead daughter was fine, just fine,  more than fine, happy, blessed, romping through eternity with Jesus at her side! Why should I be, how could I be, comforted by this when I had no such assurances about my father? What did the experience of the narrator have to do with me? If God invited me to a cottage for the weekend and fed me good food and showed me my Dad communing with Jesus in fields of wildflowers, then sure I’d feel better. Wouldn’t we all? It would be so easy, then.

The point of faith is that we don’t have such assurances. The point of faith is that we believe without such assurances. I know this. I know this.

But I don’t know where my faith is. I want so desperately to find it. I want so desperately to believe, to know, that death is not the end, that it’s not final, that it – my relationship with my father – is not over. We weren’t finished. I didn’t get to say goodbye. There were more conversations to have, more hugs to exchange, more love to express. We weren’t done. He can’t be just gone. He can’t be. He can’t be.

I find myself, too many nights, too many days, reeling from the shock of the realization that he is gone, doubling over, falling to my knees, pressing my fists to my eyes to push back the tears. And invariably, as I reel and fall and struggle, I find myself telling myself that it – this, all this – just isn’t. It just isn’t. It’s not the end. It can’t be. And so I return to the old stories, the articles of faith that used to provide comfort, that could provide comfort still, if I could hold onto them the way that I used to. I tell myself that he must be somewhere. But where? Someone said to me, some months ago, that he’d gone to a better place, and I wanted to grab them by the collar and shake them and make them tell me, where? Where? How do you know? Do you know? Tell me!

I knew that they didn’t know. I was angry that they didn’t know. I am angry that I don’t know. I want so badly to know.

I read an exchange the other day between Jean Vanier and a Canadian writer, about death. Vanier wrote about how he felt when a beloved friend died, how he waited to hear from her, how he waited for some ghostly visit or dream message. “I had hoped that (she) might find a way of communicating with me,” he said. She didn’t. “All I can do,” he concluded, “is trust that she is well.” I too had hoped that my dad might find some way of communicating with me. I tell myself that he might have (I have stories; I am not ready to share them); I look for his messages everywhere, I look so closely that I worry I will miss them for looking. I look so closely, because I don’t quite – I don’t yet? – have the faith that would allow me to just trust.

I don’t know what such faith would look like, exactly. I look to the Bible, I look to the poets. I look to Socrates, who insisted that death should never be feared or mourned, because the soul’s release from the body is a liberation for which it -  if it loves wisdom, if it yearns for the goods that the body and the material world, the cave, cannot provide – strives. Socrates would tell me that I shouldn’t be looking for faith, I should be looking for understanding. But my head is muddled because I am distracted by my heart, my aching heart, and at the moment I can see no more light in wisdom than I can in my Children’s Illustrated Bible and my dog-eared copy of The Little Prince.

I think, part of the problem is, I do believe; there’s a way of looking at what I’ve called my denial and seeing it as faith, as a fervent attachment to the belief that this – life, physical existence, the here-and-now – is not it, that this cannot be it, that death is not an eternal nothing, consignment to dust and nothing more. But the skeptic in me tells me that that – that attachment to belief – is just magical thinking, wishful thinking, and for the life of me I can’t tease these apart or bring them together, my insistence upon rational explanation and my desire to be comforted by faith.

I don’t know. I just don’t know. I hate not knowing.

I’ve decided that the only way to confront this is to really, meaningfully explore faith. I’ve explored – I continue to explore – reason; I spent the better part of my adult life plugging away at the study of philosophy, battering back faith with books. Now I want to let down my guard and see if I can find faith again – it doesn’t matter where – and, if I can find it, see if we have anything in common. Part of this undertaking is banal, and biasedly so: I simply want to find some reassurance about death. I want – I actively want, even though I know that I might not find this, that it might not be possible to find this, that my comfort will derive from something other than this – to be reassured that, as Jean Vanier quotes Rabindranath Tagore, ‘death is not the lamp that goes out, but the coming of dawn.’ This desire is so ordinary, so expected, so given. But sometimes the greatest journeys begin as excursions toward and through the ordinary, as expeditions in search of received truths. Maybe. I don’t know.

I don’t really know what I’m doing here. I’m kind of giving in to the flailing. This will serve me ill, or well. We’ll see.

*deepbreath*

Do you believe in life after death? In anything after death? In some movement of the soul beyond the body, some extension of the spirit beyond the material? And whatever you believe, do you believe it fervently? Or cautiously? Or with with many heavy grains of salt or whatever seasoning it is that tempers flights of fancy, if that is indeed what these are? It’s okay if you don’t believe; I’m interested to hear it. But I also really want to hear if you do. I need to hear if you do. I’ve been afraid to ask. But I want to know.

*apologies to Rilke.

I wanted this year to start with laughter and smiles and cookies and fizzy soda. I didn’t want confetti and champagne and fireworks and streamers – I just wanted smiling. I just wanted this year to start happy.

I’m still trying to find the happy. Yes, my heart lifts when I hug my children and my lips curve when they giggle but the last week of last year and the first week of this year have been covered in a thick blanket of fever and snot and heartache and it’s been hard to find the laughter. And although Nyquil takes the edge off the fever and snot, there aren’t sufficient meds for heartache, Ativan and Xanax notwithstanding. Last week was much, much harder than I thought it would be – doing the final clean-up of my dad’s place in the week between Christmas and New Year’s was, in hindsight, less than ideal timing. Coping with the heart-punches of the holidays was difficult enough without throwing myself into the line of fire of the gut-kicks and soul-wedgies that came with seeing the last of his things carted away, his home wiped clean of his presence.

I feel like I’m grieving anew. And I feel like I’m grieving out of pace with how I should, out of pace with what is expected. Which shouldn’t matter, but it does, because I have to account for myself, I have work to do, I have responsibilities, and there’s a limit to how much space I can carve out for these depressions before the voices – mine, others – say, isn’t that enough? Get on with your life.

There’s a limit to how much I can say about all this – how much dark poetry I can attempt to wring from all this – before it gets old and tiresome and done. I know that grief doesn’t follow a schedule, but I also know that one shouldn’t dwell in grief indefinitely. There’s time for grief, and there’s time for letting go of grief, and I simply don’t know the measure between these.

Maybe it’s just the fever. Maybe I’ll feel better once the fog lifts and I feel strong again.

Or maybe Emilia just needs to keep adding to her Blair SnowWitch Project in the backyard until I get spooked out of my malaise. That could work, too.

The question was: what story are you telling yourself right now? (And, can you give yourself permission to change the ending?)

The answer was: this year, this decade, is ending in sadness. This year, this decade, is ending and my heart is wrapped in grief.

But: I can give myself permission to change the ending. I just need to figure out how.

A start: reflecting on the things that have made me happy this year. To wit: traveling across the country with my children and with dear friends; having a few lovely, brilliant days with my father before he died; my husband, who is my joy and my rock; my children, my children, my children, my children; overcoming fear; overcoming greater fear; facing fear and calling it to account and demanding that it reveal itself as something more, something better, something beautiful.

This is the ending that I want for my year, an ending that celebrates all the joy that circumnavigated the grief, and ending that finds the bravery in the fear and the beauty in the darkness and the wonder and greatness and living and loving that was in everything.

And I want this ending to be a beginning, an opening-up, an opening-towards new fear and new beauty and new wonder and new confusion and new dark and new light – because all of these need each other, each of these requires the others – and all of this as it folds back into the old and becomes greater-than and more.

And it can be. It will.

Happy New Year.

Christmas has come and gone and we are still picking figurative tinsel out of our hair, even as we move forward into a difficult week, clinging to the hangover of joy so that whatever pain the next few days bring is blunted by its residue.

We’ve come west to try to finish the work of clearing out my father’s home, of getting closer to closure with the business surrounding his death. My husband is doing the heavy lifting – the packing, the moving, the cleaning – and leaving to me the sorting – the physical and emotional sorting – that will, hopefully, bring the aforementioned closure, closure that I am not certain that I want, but still.

I cannot go to his home this week. I cannot do it. I am ashamed of this, a little, but it is necessary, so I am trying to forgive myself. Instead of me going to Dad’s stuff, his stuff – the few remaining things that might matter, the stuff that my husband will sift and sort and set aside – will come to me in the lair that I have fashioned for myself in my mother’s home some miles away, and in the meantime I will fret and fuss and worry that some precious object – some note, some stone, some photograph, some feather, some fine bit of detritus – will be misplaced or overlooked or tucked in the wrong box and sent to the thrift store or the recycling box and be lost forever. I will, worry, I will worry constantly. But that is also why I cannot go, because were I to go I would linger over every last spoon and teacup and paper clip and oil change receipt and spend an age agonizing over whether I could bear to let these – these remaining artifacts of my father’s life – go.

So, no. I am struggling to keep a distance, some little distance, between myself and the things that are, right now, too difficult, and working to distract myself with diaper changes and music shows and marathon cookie baking sessions and visits to see the horses at the ranch and eating my mother’s lasagna. And I am tending my grief carefully and quietly, keeping it well watered with the last drops of holiday joy. And hoping that I will be okay.

The view from the road between my mother’s home and my father’s. Desolate, and breathtaking.

I don’t know how much I will write this week. I may need to write. I may need to not write. We’ll see.