This past weekend I tried to explain New Year’s resolutions to Emilia.

“A resolution is something that you decide that you want to do in the upcoming year. You say it out loud or write it down, on New Year’s Eve or New Year’s Day, so that everyone knows what your resolution is.”

“But you’re not supposed to tell other people your wishes.”

“It’s not a wish, really. It’s something that you want to do or have happen, and you make it happen for yourself.”

“So you don’t need stars or fairies?”

“No, you don’t need stars or fairies. You’re your own fairy.”

“Can you be someone else’s fairy?”

“What do you mean?”

“Can I do Jasper’s resolutions?”

“I don’t think that Jasper has any resolutions.” (This, by the way, is not entirely true. I’ve made some resolutions on his behalf – I’ve resolved that he complete potty-training, that he sleep through the night, that he stop using my hair as a comfort object – but I don’t think that this is the kind of thing that she had in mind.)

“I think he has resolutions. I think he has resolutions to play and ride a bicycle. I could help him resolution those.”

My impulse, here, was to insist to her that a person’s resolutions are always their own, and that you can’t (my own example v.v. Jasper notwithstanding) make resolutions on others’ behalf, nor can you fulfill resolutions for anyone else, nor should you want to. The whole point of resolutions, I was going to tell her, is to make a commitment to yourself, to make a promise to yourself.

But then I thought, what if she has a point?

It is great, of course, that we seize the opportunity that is offered by the start of a new year to make promises to ourselves, that we regard the turning over of the calendar as a signal that we should make such promises to ourselves, and that we approach the new year in the spirit of self-renewal and self-commitment and self-improvement. But what if we chose, instead of this – or in addition to this – to press those energies in service of others? What if, instead of resolving to lose weight or stop procrastinating or cut back on coffee or doing it whatever it is that we hope to do to make ourselves feel better about ourselves, we resolved to do things to make others feel better? To make the world a better place? To put our communities on diets that cut back on negativity and replace everything that is heart-clogging and bitter with kindness and empathy and generosity and grace? To be each other’s fairies? To encourage each other in play, and teach each other to ride bicycles?

It’s nothing new, of course, to resolve to do more good, to support more causes and be more charitable, etc, etc. But I’m talking about more than that. I’m talking about resolving to make kindness a daily, mindful practice. I’m talking about going out into the world, every day, and asking one’s self, at least once, how can I make someone else’s day just a little better? Maybe that just means smiling and saying hello in situations where you might otherwise stare straight ahead and keep walking, or holding the door open for someone, or randomly buying someone a cup of coffee, or taking five minutes to call an old friend, or setting aside an hour to devote to helping your daughter cover the ceiling above her bunkbed with stickers. It needn’t be – shouldn’t be – something reserved for strangers, and it needn’t – shouldn’t – mean that you walk around with a stupid grin on your face when you don’t mean it. It just means, resolving to spend some time, every day, being actively mindful of the happiness of others.

I’ve still got my own personal resolutions. One of them is to find a way to balance my more evangelical and proselytizing impulses when it comes to do-goodery with, I don’t know, less proselytizy impulses, and this, I know, isn’t the best start, but still. Sticking to personal resolutions is hard. So for now, like Emilia, I’m going to stick to other-directed resolutions. I’m going to resolve this: to put kindness, gentleness, humor, trust and grace out into the world wherever I can; to direct those efforts toward strangers, friends and family alike in the form of random and not-so-random acts of kindness and generosity; to do this in small ways and medium ways and large ways and whatever ways are possible; to do so mindfully, and thankfully.

And to help Emilia teach Jasper to ride a bicycle.

Training in the machine gun arts I will leave to their father.

**I am really going to hold myself to this. There will be days – days when I have not had enough coffee, or when Emilia is behaving more like Maleficent than one of the chubby little good fairies – when it will be difficult, because, contrary to how I might come across in posts like these, I can sometimes be a really cranky bitch.

***Shutting down comments, sorry. No space here for snark, and I can’t moderate effectively from Vegas, so.

My eyes already touch the sunny hill.
going far ahead of the road I have begun.
So we are grasped by what we cannot grasp;
it has inner light, even from a distance-

and changes us, even if we do not reach it,
into something else, which, hardly sensing it,
we already are; a gesture waves us on
answering our own wave…
but what we feel is the wind in our faces.

– Rainier Maria Rilke, A Walk.

A wish for the new year, for myself, and my loved ones, and everyone: to answer our own waves, all of us. And to grasp, or seek to grasp, that which we cannot grasp, and to let ourselves be changed. And through all of it, always, to feel the wind on our faces, to let it blow our hair and kiss our cheeks and to love it, to welcome it, even when it stings.

(Further to yesterday’s reflections on the divine…) If, then, God is always in that good state in which we sometimes are, this compels our wonder; and if in a better state this compels it yet more. And God is in a better state. And life also belongs to God; for the actuality of thought is life, and God is that actuality; and God’s self-dependent actuality is life most good and eternal. — Aristotle, Metaphysics (XII.1072b24) (emphasis mine)

(Also…) Philosophy, is the talk on a cereal box / Religion, is a smile on a dog / I’m not aware of too many things / I know what I know if you know what I mean (do ya?) — Edie Brickell & The New Bohemians, “What I Am.”

(Photographosophy, I’m Not Aware Of Too Many Things Edition.)

Today is All Soul’s Day, or the Feast Of All Souls, which is a name that terrified me as a child, because I imagined that it referred to a sort of buffet of ghosts, which, really, is a discomfiting idea at any age. But it’s not a ghost buffet, thankfully (or regrettably, depending on how dark your interests skew): for Catholics, it’s the rite of The Commemoration of All the Faithful Departed, which means, basically, it’s the rite of remembering and praying for those we love who have passed and who have not yet – yet – reached what Catholics call the Church Triumphant (Heaven) and the ‘beatific vision’ of God. It follows All Saint’s Day, which celebrates the souls of the just who have reached the Church Triumphant and are, presumably, getting down with some celestial karaoke and partying with the Lord.

This is one of the teachings of the Church that caused me to wander away, confused and frustrated. It seemed to me to make Heaven out to be some kind of super-elite after party to which one could only be admitted if one had made all the right connections and got the invitation and the directions and followed them to the letter and knew the secret password – in Latin, of course – and had their name on the guest list and also was wearing just the right outfit and also probably knew the bouncer. Which somehow just struck me as wrong. What if someone was a good person – really, truly good in their heart and in their soul – and just hadn’t been hip to all the rules? What if someone were really truly good but had become disillusioned by the sometimes very dodgy mortal politics governing entrance to that party and decided to not participate in what sometimes amounts to nonsense and other times to very grave harm? What if someone were really truly good and had just gone about getting to know God in their own way and had really believed that they’d established a relationship with God and that God would totally have wanted to party with them in Paradise, or at least just grab a coffee and chat? What then? Would God just say, oh, hey man, you didn’t get that secret password from those dudes in the robes? Can’t let you in! Yeah, I know some of them were sometimes skeevy and some of them maybe burned some women as witches and maybe some of them launched the occasional violent Inquisition or two but still: they’re my posse. You’re not down with them you don’t get in. SORRY.

I’m not sure that I like that God. And I’m not sure that I want into that party.

But I’m still Catholic enough to pause every year at this time and to wonder about who got in and who didn’t. Last year, when All Saints’ and All Souls’ Days came just months after my father had died, I locked myself in the bathroom and cried for hours. What if he didn’t get in? What if he didn’t get in?

I tell myself that it simply cannot work that way, that a just and loving God would not deny souls entrance to Heaven on the basis of technicalities, that Paradise – whatever that means, whatever that looks like – would not be run like a country club with obscure rules and high barriers to entry, that the ‘beatific vision’ would be offered to men who burned women as witches at the stake or who protected child-molesting priests and not to Plato or Gandhi or my dad. I tell myself that the God that I was raised to believe in would have no criteria other than the goodness of hearts, no standard other than love. I tell myself that if that’s not how it works, then I am right to turn my back on it, that this is what so troubles me about organized religion, about the organized religion that I was raised in and that I wring my hands about, constantly.

I am telling myself this today, as I wait to hear the bells from the Catholic church down the street, as I sit and think about death and souls and the beatific vision of God, dwelling, as 1 Timothy says, in unapproachable light. And as I remember my dad, who was good, who was so good, who was so gentle and loving and wise and just and sweetly eccentric in the most beautiful way, and who I know – I hope, I pray – can feel the warmth of that light.

I am telling myself this today. And I am believing it, or trying to.

No, Emilia is not dressed as Jesus. That would have been pretty funny, but I still have enough of a hangover from years of being raised Catholic that I would worry about being smited (smote?) (smitten?) for impiety. She was a cave girl, via Jasper’s Bam Bam costume, which he rejected in favor of last year’s ill-fitting fireman costume accessorized with his sister’s bright pink ankle socks, a choice that we didn’t understand until we witnessed him devote two-thirds of his trick-or-treating schedule to systematic jack-o-lantern safety inspections at every house in the neighborhood (“ooh, Mommy,” he’d say, kneeling by a particularly brightly lit gourd, “PUMPKIN. TOO HOT.” Then he’d try to blow it out.) Clearly, he had a mission, and so he wasn’t so much donning a costume as he was putting on a uniform and pursuing a vocation. We never did figure out the pink socks, but I think that that choice is best left unexamined.

Anyway, yeah: Emilia went as a cave girl, but ended up looking more like a very tiny Jesus with blunt-cut bangs and a leftover steak bone shoved in his robe belt, which is, I imagine, exactly how Jesus rolled. But you didn’t hear that from me.

/looks anxiously at the heavens.

(I dressed up as the ladies of the YummyMummyClub dressed up as me, because, you know, what’s not awesome about meta-costuming?)

(I also dressed up liked this for the Blissdom Canada costume/karaoke party. I’m thinking about adopting it as my regular look, because, seriously, I think that it’s just ME.)

When all was finally said and done, it wasn’t appearing on CNN in a tutu – nor appearing on CBC in a tutu, or posing in Central Park in a tutu, or watching as a limo slowed down on Fifth Avenue and the passenger leaned out the window and hollered – at me – hey, I saw you on TV in that tutu! - that stood out as the most memorable moment of my week last week. Which, when you think about it, is memorable in itself: I had a week in which I appeared on CNN in a tutu and that particular experience will not be recounted here because, during that particular week, stranger things happened.

Stranger things, like the prayer circle.

I don’t even know why the prayer circle was there, in the elevator bank in a remote wing of the convention floor of the Sheraton in Times Square. I was there because I had gotten lost, and, as usually happens when I get lost, I had rushed determinedly in whatever direction seemed most promising and in this case it was toward a bank of elevators that, it turned out, was hosting a prayer circle. And my first thought was, oh. They’re blocking the elevators. My second thought was, and they’re praying.

My third thought was, and I’m wearing a tutu.

I considered, for a moment, turning back. But turning back meant trying to retrace my steps through the maze of the convention floor and I wasn’t really sure that I could manage that and I was late and I was frazzled and I was pretty sure that if I didn’t keep moving I would just collapse to the floor and cry. So what if there was a prayer circle, praying, right there? Those were the elevators that I needed.

So I walked up to the circle, holding the layers of my tutu close to my body so that I wouldn’t make too much rustling sound and disturb the prayer. This shouldn’t have been a concern, because they were praying really, really, loudly, but still. For some reason I felt as though my tutu, with all its ruffles and tulle and bounce, might represent some kind of affront to their spirituality. I edged close to a woman on the outside of the circle.

“Excuse me,” I said, in a dramatic whisper that wasn’t strictly necessary, given how loudly they were praying. “Excuse me, but I really need to take the elevator.” The woman turned to me, looked me up and down, and smiled. “I saw you on TV,” she whispered. “You’re a good woman.” Then she resumed her prayer, and, continuing to pray out loud, put her hand on my back and gently guided me forward through the crowd until I was near an elevator. Someone pressed the button, and I just waited. Everyone looked at me and – not breaking the rhythm of their prayer – smiled.

I might have cried right then, but I was distracted by the fact that I was the only one who was a) not praying, b) white, and c) wearing a tutu. I smiled back – it was, I think, what is usually described by unimaginative writers as a ‘brave smile’ – and concentrated very, very hard on willing the elevator to come. Then I noticed that their prayer had changed.

“…and Lord, give this good woman strength, and surround her in love, and take care of her nephew, and her family…”

That was when I started crying.

Last week was – notwithstanding the hurt and the drama – so full of love and support and generosity, and that love and support and generosity sustained me through the hurt and the drama and that in itself is extraordinary. But as I said in this video interview, and in many media interviews, the only thing that surprised me about that outpouring of love and support was its volume. I already knew that this community is a loving community, a generous community, an extraordinary community. It’s lovingness is one of the reasons that I’ve kept blogging through the most difficult times, why I’ve felt empowered and emboldened to share even my darkest secrets and my deepest fears in this space. Even when the trolls have come out from beneath the bridge and trampled the flowers here, I’ve kept going, because I know, I’ve always known, that this is a community of good people. And then last week happened, and I realized: this community is so much bigger than I ever imagined. This community is made up of women bloggers and parent bloggers and lifestyle bloggers and food bloggers and naked bloggers and social media rock stars and PR experts and journalists and restaurateurs and trampoline businesses and politicians and tutu-wearing preggos and friends and strangers and random passers-by in Central Park and a clutch of beautiful people praying in an elevator bank. This community is online, and off. This community is the world.

(photo credit: JenIsJen)

I spoke a lot with people last week about the power of social media, about how we who use social media are so empowered by this medium, and about whether this changes everything, whether this – the power of a community on the Internet – changes the world. It does, of course. This medium is powerful. We who are using this medium are powerful. But there’s more to it than that. It’s the medium – and that medium is us, our voices, magnified through the tool that is social media – and the message. We are only as powerful as the stories we tell, and our stories are only as powerful as the heart and soul that drives them, and it is when we dare to raise our voices to tell those stories, share those stories, and when we do so with all our hearts, that we connect with other hearts and voices and inspire them to join us in our story, our song, our prayer. That’s what is powerful. Social media is just – just? – the megaphone, the amplifier; we are the storytellers, we are the voices raised in a kind of narrative prayer, we are the medium, and the message, and we can change the world.

We did change the world, a little bit, last week. You did, all of you with your beautiful, powerful voices, your good hearts and your prayers.

Thank you.

(Because I know that it will be said – I know this, because I am thinking about it – it’s important to point out that social media doesn’t work this way for everyone. Not everyone gets their stories heard. Which is another story entirely – one that I’ve been thinking a lot about this week, and one that hurts my heart, and one that I think demands attention – one to which I will direct my own attention – but I don’t think that it negates the force of what I’ve suggested above: that when our voices are drawn together – by the pull of stories that reach right into our hearts – they do become an amazing force, and that the real power here is not just in the tool that we’re using, but in the goodness that is driving us to use it.)

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.