Emily Rapp's Blog, page 7

Bella Vida

Bella Vida

Today Rick is standing at the screen door with Ronan on his hip, pointing at the street and saying, "See that out there, Zoat? That's the world. What do you think?" Ronan's little fist fits just beneath Rick's shoulder blade, as if he might push it up had he Herculean strength. Ronan blinks into the light and offers a little grunt and then a quick, full-body sigh. Backlit by the yellow morning sunshine, dense but bright, the house already heating up, the ceiling fan spinning the air, Rick and Ronan look like the dark outline of figures in a painting waiting to be filled in, a wood cut of a father and son, a vision that any artist might want to capture. I think of Lily in To The Lighthouse, uncovering the myriad domestic moments unfolding all around her, wondering why she feels so comforted by what she witnesses and yet also so unsettled, so introspective and deeply out of place. I think of the Vermeer painting that I like to visit at the Frick Museum in New York City, and I find the catalogue to re-read its description. "Officer and Laughing Girl" is about an intimate moment between two people sitting together near an open window of what is presumably a tavern, the woman's face animated, alive, responsive, with only the profile of the officer visible, but according to the authors of The Frick Collection: A Tour, the painting is mostly about the light, painted here in a way that renders time as Time in the existential sense:

Whatever the nature of the human exchange depicted here, it seems obvious that the real subject of the picture is light – the intangible light shown bursting in through the open window…but the light soon recedes into dark corners…In this subtle fashion, Vermeer makes light a metaphor for time, and reminds us ever so gently of its inevitable consequences.

These consequences are ones Rick and I know all too well as the clock ticks down on Ronan's short life. The world out there is also the world inside of us, each one forged by the possibilities and limits – including the ultimate limit: death – of the other. I wonder about this idea that the world exists either beyond or within. We search for "our destiny" (an outward extension) or our "inner truth" (an inward reach) and we rarely just sit in the place we live and inhabit it fully. This is why millions of people endure gong baths and off-key Om-ing in yoga; we twist ourselves into elaborate shapes to try and find that still point, that clear space, that empty field, but as soon as we get there, even for a moment, we want to fill it, empty it, fill it, empty it, etc., and then we die. That's what's so beautiful about reading Woolf or studying this particular Vermeer painting: the recognition of the quiet brutality and blazing necessity of this cycling. Rick sent me an email in Spain: The Zoat abides. And indeed he does.

Sol y Luz Street is Ronan's alone; he is in every room: his beanbag, bouncer, homemade floor quilt and "toys on rotation" in the living room; his giant stuffed panda, various strollers, remaining toys, and a whole posse of stuffed seals in the back room; the nursery, of course, is fully his domain. This is his home. When he dies we will have no choice but to leave it. I cannot live here without him. I cannot walk through these rooms with the images of him that the smallest movement will provoke. I cannot interact with those tiny and ill-mannered ghosts. And it is very weird and perhaps even melodramatic to think about the haunting of one's own house long before it might take place. Sol: Sun. Luz: Light. Ronan is losing his vision. The light is fading slowly from his eyes. His head is growing heavier. Swallowing is becoming more difficult. And yet the name of the street suits him somehow. Sun and light are such inevitable vehicles for metaphor and that's why they work: they're stable, clear, they are what they are and we fill in the blanks with our postulating, with the habits and thoughts of our own minds – all of our "thinky thinky." We expect sun and light – if not today then eventually. Ronan falls asleep without worrying when and if he'll wake up. Insofar as he can experience expectation, he expects his life to continue, and then someday it will not. His lack of worry about the situation is terribly simple, and, seen from some perspectives, enviable.

"Is this a donation?" Someone is asking through the screen door. Rick has handed Ronan to me and is having breakfast  – the usual peanut butter sandwich and fruit – and I'm sending emails with my arm around Ronan. "Sorry?" I ask. "Is this a donation for the Salvation Army?" No, I tell the nice man who drives the truck picking up donations once a month. It's dirty diapers. "Well, that would have been a surprise," he chuckles, and walks away.

I'm suddenly reminded of a book I loved as a kid, a book about "a day in town," when the little bear boy goes out with his bigger bear mama to run errands. The bear is wearing red overalls and the mama sports a flowery dress and a straw hat. They are eco-bears before it was cool, with re-usable bags swinging from their furry brown arms. They pass a digger making the foundation for a new building, the postman bear going along happily on his rounds, delivering valentines and greeting cards instead of bills, the doctor bear glimpsed through the window of the hospital, patiently taking an ill bear's temperature, all the movement and bustle of a city and its many people-driven cogs. That book was so comforting to me. Each time you opened it you found streets, activity, order, people, life. No loneliness or isolation, just bears on the move and many of them paw-in-paw. Connected. Together. The bears eat ice cream and some of it melts on the little bear's paw. They have a to-do list and they check off their chores. I love to-do lists, little nets of activity that scoop up the hours, give purpose to the days, which is a way of providing hope. "What a good day," the little bear says later as mama bare is tucking him in. He's learning how to be a big boy bear in the world.

The last time I visited the Frick with my mother-in-law was almost one year before Ronan was born. We looked at the Vermeer and a few other paintings, and then spent the rest of the time people watching in the quiet interior garden with its still pond and softly trickling fountain. The light there is muted and thick and complicated and slightly fizzed with green from the well-tended plants. Sometimes when I feel despair at Ronan's situation, I remember that room and imagine that this garden is like the inside of his mind, a slice of the quality of his experience. In the middle of all those errand-runners of New York City, this quiet space, this sanctuary. The one cannot exist without the other. Ronan has no use for my garden image, but it helps me.

Yesterday the vision specialist came to the house to try and assess what Ronan can see. She has promised to bring the "light box" and some other toys, in addition to a pair of glasses that might show me what it might be like to literally see through Ronan's eyes. She watched him eat and she held him. She gushed about his beauty and then we sat and looked at him. Nothing more to say, nothing more to do. "You could tie some bells to that textured string he likes," she offered. I agreed. He can watch TV or a light box or sunlight coming in through the window, its quality and texture changing as the day progresses. We try to read his cues and interpret what he enjoys. Nobody is trying to improve anything. Yet the mysteries frustrate me. I want to crack them open. I want the Tay-Sachs glasses; I want to be able to understand what it might be like for Ronan to gradually go blind. If there are no testable limits to his world, how will we know if there are any limits at all? Or is this just a form of magical thinking? Do you miss a skill if you don't know that you have it and can't register its loss? I want information.

I go to Target. Information is unavailable, but consumerism is. I need new workout clothes and a bottle of shampoo and an oversized pretzel sprinkled with oversized granules of salt. I choose a blush/bronzer in the delightfully dopey color of "raisin glow." What woman wants to look like a raisin? Me, I decide. Better this food-related color than blushes called "Lustful Rose" or "Sexy Pout Pink" or other colors falsely promising that the swipe of a cheap bristle brush will change your face, and by extension, your life. Waiting in line to pay I scan the tabloid headlines. Apparently Casey Anthony has gotten a book deal. Of course – the details of the case are so salacious, so unimaginable. I plunk down my $5 t-shirt and $10 leggings and $20 shampoo and feel like I might be sick. Later, in another unrelated article online I hear about a celebrity-studded event for an organization that helps people overcome stutters. Does the NTSAD need a celebrity spokesperson? If a famous person's child was born with Tay-Sachs or another allied disorder, would there be a cure? And by cure I mean the re-education of genetic counselors that usually know nothing, and a demand for insurance companies to pay for a comprehensive genetic workup – including DNA sequencing — if a couple requests it. And then I realize: part of the sting of Ronan's Tay-Sachs diagnosis is that it makes me feel stupid. I sit at my desk and look at my Harvard diploma, all that rattling on in Latin and think why didn't I read the fine print about the Tay-Sachs test? Yes, I have absolved myself of this error, this oversight, which was not mine so much as the prevailing "understanding" in genetic counseling circles, but it still peeves me. Nobody likes to feel like a dumb-ass, especially when one has a lot of letters after one's name.

Who cares if I feel stupid? Nobody, really, especially not Ronan, who just wants me to bounce him around the house and sing silly made-up songs – Oh Zabugga Oh Zabugga Oh Zabugga wugga boy – when he's tried and drooly and overwhelmed with the struggle of teething and growing and building up lipids that he lacks the enzyme to process.

I want to read about Casey Anthony but I resist. I've had enough. Like many others, I was obsessed with the story when the details were first revealed. I remember stumbling upon a picture of Caylee balanced on her mother's knees, the two of them locked in a glance, both of them laughing. I don't know what happened to that little girl, and nobody ever will know for sure. There is a soft blue light coming through an ordinary, square window. Whatever happened later, there is love in that moment. It doesn't excuse what Casey did or didn't do, but whatever it is, she'll have the rest of her life to regret it. I pity her.

The Casey Anthony trial is tabloid-ready: a young single mother, a dysfunctional family, abuse allegations leveled at various family members, a beautiful, dead child. After her release, people are chasing down the mother, hating her, blaming her, convicting her regardless of what the jury said. I get it. I find Casey repulsive, manipulative, and sad. Although I firmly believe that making her a monster is far too easy, I have been guilty of it myself. This is, of course, the media's intention. Piss everyone off, because it guarantees more viewers/readers! Rage=Sales. Sales=Money. Money=The Goal.

I hated Casey like everybody else. Here I was, wishing every day I could do something for Ronan, imagining my childless future, and she KILLED her child. Oh, I was sure of it. I convicted her straight away, even before I heard all the DNA evidence, all the witnesses, all the damning information that mounted by the week. I was sure she was guilty and I wanted her to suffer. I don't believe in the death penalty, but I remember saying to Tara on the phone one night, "I want that bitch to fry."

And then I heard about the tattoo. Apparently Anthony got a tattoo – bella vida – two weeks after her daughter disappeared, during which she spent most of her time, it seems, in a drunken, party-going daze. Everyone agrees this is disgusting – was she saying that her life was beautiful because her daughter was gone? How dare she! – but it's also dissociative behavior, the point of which is to allow a traumatized, bereaved or victimized person to escape reality almost involuntarily. This new bella vida she thought she was living, this new life that came to a screeching halt with her arrest, was a way, perhaps, of keeping her loss at bay. I felt a connection with her actions here, which sickened and surprised me. As monstrous as it may be, I see her response as rooted not in escapist joy but in soul-pummeling grief, the first feeling manufactured for the purposes of surviving the second. I know because I've felt it. Although I hate being away from Ronan, when I am apart from him there is also an insane giddiness, this imagining that I live in another life, am a different person, and will not have to lose him. It's sudden, momentary, and happens all the time, even on my trip to Target. This empty playacting, for just a moment, makes me believe that I might escape what's coming. And then I miss him and go home and hold him and cry like an animal. So many times I wake up, wait for dread to sit on me, and wish that Ronan had died peacefully in his crib – literally passed away without pain or suffering – and he would not have to go through what's coming, and neither would we. Is it monstrous? Certainly. But so is grief. Very few people want to walk into the burning house or jump into the dark well – choose your metaphor – of grief. Heroes might, but heroes are depicted in the sound bite-crazy media as superhuman and they often seem rightfully bewildered by the attention. The rest of us are simply human. None of us knows what we might do after we do something terrible. When I hear Ronan squeak I'm also sick with relief that he is still alive, and when I lift him from his crib and he greets me with a "gee," and all of this happens in the span of one minute, on many mornings. Am I monster? No. I'm human. No heroes here. And no villains, either.

It's interesting to me what merits media coverage. What about following a child around for a day, seeing the daily, eroding and corrosive abuse he or she endures for years and years and years? This happens all over the country, all over the world, in your hometown, on your street. Not the stuff of sensational headlines – it's too real, it's not abstract enough, it offers no real chance for "overcoming" anything. There's nothing that can be solved, no real target for blame except "education" which, because it isn't attached to a human person, doesn't have a face that can be interpreted as cold, lacking remorse, or diabolic.

Getting a diagnosis of Tay-Sachs for your child is like being told that he or she will get hit by a bus sometime in the next few years, and you will have to watch this fatal collision. Your feet will be glued to the pavement, you will be mute, stuck, absolutely helpless to do a single thing. I think perhaps these struggles are too real for the news media that operates in one-liners and celebrity photos. (When we lived in Los Angeles, LeAnn Rimes moved in next door, and our street was packed 24/7 with sleazy guys smoking against their beat-up cars, heavy cameras swinging from their necks, hoping to snap the first shot of Ms. Rimes with her new boyfriend). Better to shuffle off those unfortunate parents and their dying children into a corner, because it's not sensational enough to make headlines, and there is no target for blame, no laudable heroes. It's not a good story, you can practically her a marketing professional saying. Instead, just small acts of living, which are different from acts of bravery and, I would argue, far more interesting if people were willing to take the time to try and absorb the complexity of emotions that the parents of terminally ill children feel on a minute-by-minute basis.

How to change this? A protest, a letter, a rant?

I was a difficult teenager, because I was confused, as all of us are at that age, and if we're honest and smart, continue to be until the day we die. I was hell bent on revolution. Change, I thought, could only be forced. No waiting for Ms. Emily Rapp, no way. I became a violent vegetarian and liked to cite graphic details about the slaughter of animals at the dinner table. I liked protests and political arguments and I liked a good fight. "I'm fighting for peace!" I told my dad. "That seems like a weird way to do it," he said, and left me to hang up my Sierra Club poster. I could get fired up about any issue, I did not concede my point easily, and I was an expert grudge-holder. The kids of my generation, riding on the sacrifices of our baby boomer or even older parents, believe we were meant to succeed, to do, to change the world. Actually, we're just people, but we were told that we're special, unique, and I remember going to countless "Student Senate" events where the theme was "If not us, then who? If not now, when?" This galvanized me as a teenager: Fight poverty! Just say no! Campaign for something, at the very least. These impulses are good; it's better than drugs, better than hurting people. "At least I'm not addicted to DRUGS!" I'd scream at my parents, as if being a righteous pain in the ass was somehow made more pleasant by this ridiculous comparison.

Change is needed in the world, yes, but forcing it is perhaps another kind of violence, and it's the kind of violence that ordinary parents inflict on their ordinary kids every day, driving them to be different, better, perfect, thinner, prettier, whatever. It's not the impulse that's the problem; it's the execution.

One afternoon during preparations for a high school play (I've forgotten which), I was sitting in the green room, sorting through the costumes, and I had not eaten in days. I was starving and miserable and sad. As I was arranging pots of cake makeup on the vanity table, I saw ants crossing the mirror and headed to the ceiling. Ants in the green room. Fucking ants! I hated those ants. I took off my shoe and used it to beat the mirror and then the wall, killing ants en masse. I stormed out of the room, figuring I would hammer something into the set, maybe kill a few more insects, when I saw a boy I didn't know well but had a crush on, standing near the open curtain. We could hear banging and laughter from the stage. I totally just hammered my thumb, someone wailed. "Hey," I said.

"Why don't you eat this?" he said, and stepped forward from the shadows holding a taco salad from Amigos and an enormous diet Coke. When I ate, which was not very often, it was a taco salad from Amigos and an enormous diet Coke. I had no idea that he knew about my eating issues, but of course he did. We'd been building the set and practicing lines and staying late for practice for weeks. Someone was always running out for food. I felt a great release, a feeling that was almost sexual, it was that complete and embodied, and I took the salad from his hands and ate the whole thing as he sat next to me on some dusty old boxes. We talked for an hour or so, and for the first time I felt fleshed out and human. If a spider had strolled by I would have escorted it out the side door, my murderous tendencies muted. This tiny human connection that happened in the remote shadows of a nowhere small town high school stage, off sight, off scene, was more of a peacemaking moment than any of my histrionic dinner-table speeches. I felt convinced — of what I don't know. Humanity? Kindness?

That summer my brother and I went on "the peace trek," a mobile Bible camp led by two hippie pastors. We took our trail mix, our coolers full of soda, our idealism and our resignation that riding around for a week in a stinky van was better than the other dismal prospect of months spent stacking watermelons at the local grocery store in a swampy Nebraska summer. The idea of the trip was to learn about the "machine of war" that our country had built, from atomic bombs to military might to nuclear weapons. We would study Biblical arguments for peace and also Biblical narratives of war. We would learn to think about these issues for ourselves. We slept on church floors in Alamagordo, New Mexico under the looming shadow of a blonde Jesus on his knees praying in a shaft of light. I ate my first fresh tortilla. We visited Los Alamos and talked about the origin and dangers of nuclear war and tromped around in the Sandia labs. We sang the requisite Bible camp songs every night. We went to the White Sands monument and posed for photographs that we believed to be reminiscent of the cover of a U2 album. We sang Simon and Garfunkel songs at the top of our lungs, wind running through the open windows, the sun brutal and bright, and we ended up at Sky Ranch in Colorado, where I turned 16. My brother wrote and sang a song called Bodacious Babe and we listened to a rather exuberant pastor lead us in a pre-meal song called 'He will, he will, save you" to the tune of "We will, we will, rock you." Christianity: the overcomer's religion. Jesus defeats death on your behalf. But what if there's nothing to overcome?

We can never know what bella vida meant to Casey Anthony when she needled it into her skin. It's too easy to judge her, too easy to make her the demonic embodiment for all that preoccupies and haunts us as a culture. If she's a murderer, she will have to live with it. And if she isn't, she will still have to live without her daughter, and nobody can know what that might feel like for her. It's certainly not going to be a peaceful place, a sanctuary. She will be haunted – in ways we may never understand – by what she did or didn't do. People hate her. She probably hates herself. And her child is gone. Perhaps the better response is empathy, even in the midst of our disgust, and sadness that while this trial was splashed all over the television, with Casey serving as an available repository for our anxieties and uncertainties and failures, kids all over the world, in your town, maybe right next door, are living through their own private hell.

What does a beautiful life mean for each of us? I'm still sorting that out for myself, but I believe that Ronan has a beautiful life and that my life has been made more beautiful by his existence. I wouldn't trade him for all the bratty toddlers in the world. Of course I wish I could cure him, but that's not the same thing as changing him. Ronan has no labels for his experience, there are shadows of his brain that were never fired and those that did light up have begun to dim, like fireflies fading in the last hours of the night, but when he sits on my knees and smiles, turns his drool-covered face to the window and blinks into the light, I believe he is experiencing what those of us with more evolved cognitive function would recognize and label as beauty. I can wear 3-D glasses or temporary blinding glasses, I can move my limbs as if I were moving underwater, but I will never fully know his world, and perhaps that is as it should be. It's his own world, his own sun, his own light, and it's precisely because he does not label it "his" that it can never be taken from him.

In the gushy descriptions of Vermeer's painting in the museum catalogue, the woman's face gets more airtime than the officer, but I believe now that the hidden aspects of the officer's experience are at the heart of the painting. What has not been rendered cannot be erased. The painting is not about the light – although certainly the light that leaks in the window, already fading, steals the moment as much as it creates it –  it's about the power of mystery. That's what Lily discovers at the end of Woolf's book, in perhaps the best description of an artistic epiphany ever written. Maybe we don't need the whole story. Maybe the best mysteries are those that are never solved. Was the officer laughing, frowning, flirting, talking? We can make guesses based on the face of the woman to whom he's speaking, but his profile truly gives nothing away. We'll never know, and that lack of knowledge, that mystery, is part of the beauty of the moment so exquisitely captured. Ronan's world is the unseen face of that officer, the expression that never fades because we are never allowed to see it, box it, diminish it, analyze and attempt to explain it, and by doing so, make it disappear.

Simone Weil Goes to the Neurologist

Today I am back from a week of teaching in Taos. I am weary. Ronan is lounging beside me, watching the revolutions of the ceiling fan and letting me tickle his feet. When he smiles you can see nearly six teeth, and the ones in front are getting bigger, more wolfish, more like a little boy's. I wonder if he would have needed orthodontic work, had he lived. I wonder if he'd have needed braces and headgear as I did, if he would have needed to wear that metal bit at night, as I did, the salty metal surface crusty with slobber in the morning, my mouth aching as if I'd been chewing iron all night. I remember feeling like a horse when I woke up, as if in my dreams I had been an animal led around by the mouth, my unwieldy and too-big teeth clenched hard.

I watch the trailer for the new Harry Potter film and find myself weeping at the images of dirty-faced kids in danger with only their friendship and their skinny wands and a handful of memorized spells to protect them. I need a spell, an incantation, a magic trick. My grandmother, who is nearly 90, sent me a birthday card addressed to "My Beloved Niece." She signed it Aunt Lois. She told me that God is waiting for Ronan in heaven, where he will be perfect and saved. She will never know him, and I will never tell her that he is not headed for angel-dom. This is a hard day and I have been crying a lot, crawling through the moments.

Today Ronan has worn only clothes with a surfer theme: Surf's Up, Surfer Dude, Ride the Tide. This last one has a picture of a boy in motion on a surfboard — something Ronan will never do. The green shirt brings out the green in his eyes. I am weary of the celebrity babies, weary of the births of babies that seem to happen so effortlessly, like a "woops!", and how this news is privileged over news about bombings where men and women who are somebody's daughter or son are killed. I'm not interested in parenting advice or sappy statements from the Beckham duo or Kate Hudson or Mariah Carey. I'm interested in how it's possible to live in the world while watching your kid die, while watching people die, while boarding buses in your hometown and not knowing if you'll be returning to the place you began. No handbook for that, no clear instructions, no promise that the end of the story will be anything less than unbearable. Nothing to fix it, straighten it, make the world align. When Ronan came to Taos for my birthday last week, I woke up in the middle of the night and felt the familiar drop of the ground beneath me that comes with the knowledge of what's coming, only this time the air was full of doors and behind each of them was a drop. Dropping on all sides — doors flying open before a hand, under an elbow or an eyelash. No safe place to rest.

Today I'm posting a section from the book about Ronan's life, written in Spain. Weil, who accompanied me in her own way through nearly every day of my time there.

Simon Weil Goes to the Neurologist

DAYLIGHT – INTERIOR – DOCTOR'S OFFICE

Simone, 32, is sitting on the doctor's table wearing a blue cotton gown printed with small, leaping bears. The bears are brown and wearing blue neckties. The neurologist is thirty-something, balding, and wearing a short white coat. Simone's dark hair is cut in a cheek-length bob. Her eyeglasses are round and delicate and her eyes look translucent. The room is quiet and full of light.

"Can you wait for just a moment?" he asks.

"I can wait all my life."

The doctor leaves the room. Simone swings her legs, letting her bare heels knock against the table. The doctor returns. He looks grave and slightly nervous.

"Your results are in," he says.

"I've been waiting."

"It does not look good." He is straightforward but kind. He puts the x-rays of Simone's brain up on the lit board. The dark shape of a brain is covered in dark blobs, as if some quick-moving substance has leaked.

"Right now," he says, pointing to an area on the left side of the brain (Simone squints), "you are probably noticing that you've slowed down a bit, that things that used to be second nature are becoming more difficult."

"Yes." She thinks about pulling her shirt over her head this morning. Yes, that was more difficult than usual. But the buttons are very small, which could account for the fumbling. There is the squinting, that's new. The doctor is waiting for her to speak. She obliges him.

"What does it mean?"

"In neurological terms, it means total devastation."

"I am dying."

"Yes, that's right. I'm sorry but that is correct."

He waits for a response.

"I am very sorry," he says. And he is. She's so young!

"I'm ready for this."

"I don't think you are." She clears her throat. Her vision is fuzzy for a moment and then rights itself.

"We'd like to put you in a test group."

"No, I'd rather not. No groups."

"It may give us some important results."

"It sounds like asking for answers; there are none to be found. I'm not what you'd call a 'group gal.' I'm not a joiner."

"Listen, you don't have to throw in the towel just yet. There are treatments…"

"I burn candles sometimes at night when I'm alone."

"Excuse me?"

"I'm just saying that sometimes I get dramatic about things. I mean, I'm human, I'm just not delusional about cures and such."

"That sounds…"

"Decadent, I know." She suppresses a giggle.

"Listen, you need to have an operation." He tries to make his voice authoritative, fatherly.

"I don't trust you."

"There is something wrong with your brain."

"Really? Wait. Which group are you with? What's your religious order? I do not want a confessor."

"I'm a doctor, not a priest. I took a different kind of oath."

"Exactly. But affliction will make me free. I say bring it on."

"This operation I want to tell you about could save you."

"But it probably won't."

"No, it probably won't.  But it might. Early trials-"

She interrupts him, which surprises him.  She looks so sweet and insubstantial, like she needs to eat a sandwich. "The odds are what?" Her voice is clear and robust and authoritative. She could be standing behind a podium. She could be handing him the communion wafer that he receives each week at his suburban church next to  Starbucks. The doctor clears his throat, and when he speaks he's horrified that his voice resembles a squeak. "There's a 5% success rate. Perhaps."

"Nothing will save me but waiting."

"You will die if you wait."

"I'll die anyway. You just told me so. I don't bet, but if I did, I wouldn't bet on those odds."

The doctor pauses. This patient is not interested in the proof he has presented on the light board. There's her brain – right there! How can she not see? This 5% is all she has! She doesn't want to hear about research or statistics. She is opaque, dying, and ridiculous.

"Why?" he begins dolefully, and then stops. His relieved, at least, that his deep doctor's voice has returned.

"I will tell you what I think about this."

"I'm sure you will."

"The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice."

"Listen, you are terminally ill."

"That sounds uncomfortable."

"It will be; I am worried for you. You need to make arrangements for yourself."

"Done."

"You have someone who can help you when things get difficult?"

She nods. "Yep."

"Are you…can I get you someone to talk to? I don't want you to be afraid."

"To be dying is to be nailed to a grim certainty, to be spiritually naked while dancing drunk on a table in public, drooling and farting."

"You do have these things? Help, I mean?"

"No, but I have an imagination." The doctor sees an in; he will appeal to her sense of imagination.

"We can do more scans of your brain. It will show us how far the disease has progressed."  He pauses. "The drooling and farting will continue and worsen, I'm afraid."

"But what will the inside of my mind look like? What will I see? In the scans you're suggesting, I mean."

"You'll see the map of your brain. Like this one, just here." He flips on the light again.

"That means nothing to me." Together they look at the blobs on Simone's brain.

"This is a scientific process; it's a medical thing. How can I make you understand?"

"This is death; it is a human thing. Don't you get it? Don't you understand?"

"You do not have to go out like this; there are places, people."

"We must love everything completely, in its full expression."

The doctor pauses, sighs, and looks at the ceiling. There is a poster on the ceiling for patients to look at when they lie back and the doctor (usually him) does something uncomfortable to them. It is a picture of a tree and near the trunk is written the word "Persevere." He wants to rip it down and feed it to a rabid animal with enormous, blood-tipped teeth.

"I am miserably inadequate."

He gives her a hard stare. "Actually, and I don't mean this as a license for you not to seek treatment, but for now you do seem to be doing okay. Are you enjoying activities you once enjoyed? Are you isolating?"

"You mean activities like isolating? Yes."

"Right. Listen, have I made you angry?" He's going to tell a nurse right after this appointment to get rid of that poster. Maybe some fake stars or something? A string of Christmas/holiday lights? A few white lights? Could they rig a Kindle up there with extra big words and give the patient a stick to poke the page turning button?

"I'm angry with God, sure. Look around." She waves her hand. He looks around at the empty room, ignoring the persevering tree because it will only make him angry and he needs to stay calm. "Look at the world. Aren't you?"

"I don't think about God."

"Well, he thinks about you. And he thinks about me. It's a relationship like any other."

"He thinks about us. You believe this."

"Of course. Why wouldn't he?"

"Why would he?"

"The action of grace in our hearts is secret and silent. We need him for that."

"Right."

Simone and the doctor look at one another. He takes a breath.

"This could take a while, the progression of your disease. I might call it a kind of…marathon, for lack of a better word."

"I am patient."

The doctor bites his lip, fiddles with his stethoscope. He's unsure what to do, and also, unaccountably, on the verge of tears. Who is this woman? Who is responsible for that poster on the ceiling? Why is he standing in this room?

"You will let me know if you need something?"

"I require nothing but to wait."

The doctor holds out his hand and Simone shakes it. Her grip is stronger than he expected. His hand feels clamped, almost trapped, inside her thin little muscle of a hand. He realizes, with despair and confusion, that he'd like her to clutch at him, beg him to make her well. He blushes. She lets go of him and he leaves the room.

INTERIOR – DAYLIGHT – DOCTOR'S PRIVATE OFFICE WHERE NO PATIENTS ARE ALLOWED

The doctor is speaking his patient notes into his tape recorder when he sees Simone striding across the parking lot.

EXTERIOR – DAYLIGHT – PARKING LOT OF BIG & GLASSY & WHITE MEDICAL BUILDING

Simone is wearing baggy trousers, short black boots and a slouchy top. Her hands are lifted to the sky, footsteps light and springing. She starts to skip.

INTERIOR – DAYLIGHT – DOCTOR'S PRIVATE OFFICE WHERE NO PATIENTS ARE ALLOWED

He turns off the recorder and presses "erase."

Exquisite Creatures: Ability, Goodness, and the X-Men

Today I'm proud to be contributing to the online literary magazine, The Nervous Breakdown. Click on the link below, and please check out the work of other writers on the site! Many thanks to writer Gina Frangello for asking me to contribute.

http://www.thenervousbreakdown.com/em...

Fire Season

Fire Season

When you take

a series of careful steps

to solve a complex problem,

mathematicians call it an algorithim.

It's like moving through

a series of rooms, each with

two doors, you must choose one,

you can't go back.

-From "Lamp Day," by Matthew Zapruder

  My heart goes with you; your love stays with me.

"That's No Way to Say Goodbye," Leonard Cohen

Today I am home from Spain and we take Ronan to see the neurologist. Another trip to the Mind Center, to the drab strip mall sprawl of Albuquerque, the streets ten degrees hotter than Santa Fe and the roads at least one lane wider. The sky is clogged with smoke from the various fires that have been raging across New Mexico for nearly a month. An ominous haze squats on the horizon, swallowing the view of the Jemez and Sangre de Cristo mountains. Firefighters making $12/hour and sleeping in tents are working nonstop. I imagine them living like early pioneers – dirt-caked and sweating, drinking from metal camp cups, taking one quick sip from a communal whiskey bottle before falling asleep on crappy cots in their stinking clothes. Risking their lives for people they don't know for just a bit more than minimum wage. For the price of a yoga class at the student rate. For the price of three grande lattes without syrup or any extra fluff at Starbucks. The car smells fiery, about to combust.

Before I went to Spain, on the way back from Palm Springs, we flew into a glowing smoky sky, the sun a dull orange bead, a mean eye, the cheap button from a suit jacket that had popped off and now floated like a dim but insistent light: land here.

"Where is it?" my seatmate asked. "Where's the fire?" He'd been telling the other person in our three-person row that his daughter in Mississippi was pursuing her master's degree; I love that phrase, as if a degree could be chased down and wrestled to the ground. The captain got on the sound system and reminded us that the burning smell was a result of smoke in the ambient air. "The plane is not on fire," he reassured us. Isn't all air ambient? I wondered and stared out into the gray reddish yellow blue blur, the sky like a bruise moving through all its stages and colors at once. I thought of the light in the parlor at Other Em's Lambeth Road house where I once slept with my ex on dusty couch cushions. Light that moved first through dusty curtains and then through half-empty whiskey bottles to fall in a thick puddle on the floor. Light like a pile of unfinished books. All night we listened to the odd sound of foreign sirens. As the plane tilted, a cloud like a nuclear, pulsing UFO, smooth and flat, appeared through the window. Below it, a swath of clear blue, as if the cloud were a lid or a scab that could simply be lifted away. We seemed to weigh more in the clotted sky, and our landing into Albuquerque felt like a slow sink into a soft pit.

Today in the waiting room at the neurologist's office we sit with Ronan and Skipit, the "ultra soft" light blue dog toy with elongated arms and legs that makes him look like a stretched out bunny. We're not sure which animal he's supposed to be, but Ronan doesn't care. We watch kids with normally developing brains scribble with crayons at a small table in the corner. Rick cradles Ronan's head in his hands and lets his body rest on his forearms. I rub Skipit over Ronan's hands and he blinks his pale-lashed eyes. Five and a half teeth are visible when he smiles.

It took me exactly 24 hours, five shuttle buses, two car trips, four airplanes, and three inter-airport trains to get from Spain to Santa Fe. I went through security three times and was detained for additional screening all three times, which landed me in Heathrow as the "last call" for my flight to Chicago was being announced, in a dead sprint through terminal 5 with my computer held over my head, screaming Wait! Hold on! Please don't close that door! I was convinced that my ability to make that flight was existential; if I didn't make it, I'd never get home. Once I was settled, sweating and heaving in my seat (and regretting those weekend cigarettes with Other Em), I burst into hysterical tears as I always do when I leave London. Flying out over the circular Eye and the twisting gray glimmer of the Thames, leaving one of my best friends behind, a dark cold ocean yet to cross, two more planes over farmland and mountains before finally touching down in the desert. I cry because the world is at once too small and too vast, everything knitted together but simultaneously falling apart. Control yourself, I thought, but self-talk was ineffective. I cried until I was finished and then I watched three action movies on my little seatback movie screen.

The nurse walks us into the vitals room and weighs Ronan in a bucket (24 pounds), probes gently with an ear thermometer to take his temperature, measures his head (in the 75th percentile) and briefly leaves the room to get a cuff small enough to fit around Ronan's arm and measure the pressure of his blood moving through the hidden highways of baby veins covered by fat. "You have a monkey, a giraffe, and a lion on your shirt!" I tell him. "And your shirt is green!" "Uhn-gee!" he replies.

Back to the main waiting room, into another smaller waiting room, then into the actual examination room, and finally the doctor appears with two interns in tow, telling us that this is a "teaching hospital" and that these soon-to-be doctors are here to learn. Tay-Sachs kids in New Mexico – and really, most places – are like unicorns. Nobody has seen one although they are rumored to exist. One baby with Tay-Sachs died this week and another child is dying. I met one of them this March. Ronan is moving up in "the waiting room." This is the thought I have when I see the eager, scrubbed faces of these interns. And I think about Casey Anthony writing from prison before she was acquitted for the murder of her daughter, expressing the desire to have more children. The smell of aftershave floats into the room.

I'm wary of these newbies, these docs-in-training, having been prodded and treated like a strange specimen of a body by interns before, but when I look at Rick he seems willing. I remind myself that this is not about me, it's about Ronan. What if these doctors are able to help a Tay-Sachs kid someday because of what they learn here? I am not a child anymore; if they get rude or inappropriate I can and will ask them to leave and perhaps this will prompt them to improve their bedside manner. They seem kind and at least one of them is energetic and genuinely interested. He sidesteps all the annoying platitudes of "I can't imagine" and "I don't know how you do it." He asks us how we are doing and doesn't flinch at the answers. The other intern takes notes in a chair near the door. He's as silent as a fearful ghost although he himself looks spooked. Maybe he has a hangover. Maybe he's been up for 36 hours straight. Rick talks a lot when we go to doctor's appointments; he's nervous, I think, and sad. He gives the full picture of what's happening with Ronan, down to the smallest detail. His attention to our child is almost sacramental. The devil is in the details, and sadness too. Maybe it's the same thing.

The doctor checks Ronan's reflexes and we explain that he was recently fitted for splints that he will wear at night to keep his feet flexed, which will in turn help with the spasms in his knees and the pointing of his feet. We chose a fish pattern for the splints, a school of brightly colored fish swimming in a deep blue plaster background. At the prosthetist's office Ronan's feet were marked with blue pencil. I remembered being marked with lipstick around my hips, my crotch, my ass, lines like thin red smiles, like skinny, bloody wounds drawn on my body as guides for where the leg should hit, where things should bend and match up, where parts of the made part of the body were supposed to go. All the seams made visible. When the doctor and his silent assistant left the room I flipped over the tube to look at the name of the color – "Cherries in the Snow." I used to watch those lipstick lines float off in the bath, as if the water were a handkerchief that could just lift them way. Kiss kiss, blot blot and the red bloomed like blood from a wound in the water. Washed away, washed out. It took a few days for the blue marks to wash off Ronan's feet and ankles.

The intern flips the light off and fumbles with his eye light, and for a moment the five of us plus Ronan are sitting in darkness. "Geee," Ronan says softly and kind of creepily in his scratchy dragon voice. "Ooh, haunted hospital room," I twitter, but my voice is too brash, too loud. "Ghost baby," I say, and then feel terrible for saying this. The doctor looks at Ronan's eyes in the darkness – I see his eyelashes blink, skinny shadows, two feathery doors opening and closing on his cheeks, the curved and shining whites of his eyes, their kaleidoscope colors obliterated by the bright light. The phantom intern flips on the lights and we all look at Ronan. "He seems so well-loved, like just another member of the family." We nod and stare at each other. I almost say, "Well, of course he's part of our family; what else would he be?" but I understand that the doctor's intentions are kind, and that he probably feels as helpless as we do. He's a brain specialist and there's nothing he can do but tell us why seizures happen and then write a prescription. He must feel useless, helpless, and stupid. We know how he feels. There's no future to discuss beyond what's already been discussed. Ronan's not going anywhere but back home with us. No doctor will be barging through the door of the exam room with a miracle cure. No amount of words can fill the great space between our parenting experience and the doctor's. He'll write us a prescription for a suction machine, I ask if that will be categorized under durable medical equipment in insurance billing lingo, he says he thinks so, and then I reiterate – in a bratty tone I had meant to be much nicer — our decision not to use a feeding tube. More silence. We decide to come back in November; in the smaller waiting room in front of the bigger waiting room where the same kids are still working on the same crayon photos (I watch them through the window in the door), the sweaty-faced receptionist pulls up her giant, complicated computer scheduler on an enormous screen and says, "Okay, Mom, which day do you want?"

On the way home my eyes start to burn. The sky is a hazy, pale blue, the color of Skipit, who is tucked under Ronan's arm. "The fire is killing my eyes," I say to Rick, who is sitting with Ronan in the back and reading a book about the lives of homeless people in Santa Fe. Ronan conked out the minute the car started to move. During fire season in Los Angeles I felt like I could hardly breathe and my skin itched constantly. I hadn't expected it in New Mexico. ("Our state doesn't have as many disasters as the others," my seatmate had said confidently as we landed in a fiery sky.) "Do you need to pull over?" he asks. I don't. We don't want to do this. Nobody wants to do this. Ronan won't always be in the waiting room; it's going to be his turn to go through that door soon enough, too soon. Which day do you want? What a terrifying question.

In the afternoon Ronan sits next to me while I watch an episode of Spooks on the BBC in the comfort of the swamp cooler. Outside the sky is low and muddled. Ronan is big enough now that he can sit on my lap like the toddler he'd be if he could toddle. His head notches between my chin and collarbone, his arms go up around my neck and I hold him as if he's just come running to me with a skinned knee or a hurt feeling. I say it's really okay as if he's asked me if it's going to be. His skin is soft, his hands are sticky. The back of his head is sweaty in the summer, ringlets twisting around his earlobes. I hold him and hear Rick saying to the neurologist, "We're not totally convinced he knows who we are," and thinking what an injustice it is. I've heard so many fathers say to me over the years "oh, I don't really like parenting," or they don't say anything at all or they're just absent, phantom dads, ghost fathers. The kids of those fathers are happily running around. Rick's fathering, this great gift, feels wasted, even though I know this probably calls for an adjustment in attitude. How can love be wasted? What is unconditional love if not love that expects nothing in return, especially from a child who is arguably as helpless as Ronan? Ronan needs us desperately, without realizing it. He cannot sit up or roll over. Batting at toys is an increasing challenge. He has to wear the physical therapy version of a neck roll in his high chair and while sitting on the couch. He expects our unconditional love, he gets it, and he is not locked in guilt or conflicted about it. I remind myself of this. Unconditional love asks nothing back; being Ronan's mom is my giant, painful opportunity to learn this. What I am being asked to do feels both entirely instinctive and completely impossible.

There it is, anger again. I want to do what Roz, the top spy, does in Spooks after the death of the man she loved, another spy. I want to say, with a straight face, that I'm over it, that I'm fine, that I've accepted the basic facts of the situation, that the love of my life just exploded in a car bomb, and then I want to leave the empty wineglass and go into a room alone and throw some electronics around, break some picture frames, scream and wail and have a big fat fit. I think about all the kids who don't have anyone to love them; or all the friends or former students of mine with stories about their parents saying what should be impossible things; cruel things that cannot be taken back. People beat and murder and abuse and neglect their kids. I think about chloroform and duct tape and the DNA analysis of hair. Kids are betrayed and left and abused and most of the time their abusers, these criminals, get away with it. They deserved better, no matter what they could do or what they looked like or what they might have become or done with their lives. They deserved to be valued as part of a family, as human beings. Why is that so difficult?

Firefighters in New Mexico set controlled burns around the fires – they start smaller fires in order to control the biggest ones, to prevent them from raging out of control. These controlled backburns are essential for containment. Real or set, in both cases the trees end up as charred husks, row upon row of smoking skeletons made of bark and ash.

I wrote a lot in Spain in my room named after Goya; possibly too much. I wrote while crying in that giant farmhouse of empty and echoing rooms, one room full of ceramic pots the size of professional basketball players and an old olive press with rusting metal arms, a hallway phone sometimes ringing and ringing into the darkness in the middle of the night or during siesta, nobody awake or motivated to answer it. I felt like I was back in Dublin in 1994 – no internet, no distractions, one communal phone ringing at all hours in the international dorm where I first lived before finding my own apartment, people with families living in a dozen different time zones. Hello? Hello? What? Who? Sorry? Say again? echoing in the hallway, the person who answered trying to understand through language barriers or a bad connection who was wanted and who was calling from the other side of the world. Footsteps up the stairs and then down the hallway, followed by a knock on someone's door, sometimes mine. You could smoke in pubs then, and I hung my clothes out the open window to try and rid them of the smell. A new language for interaction has emerged in conjunction with the necessity of smoking outside of Irish pubs – "smirting" – smoking and flirting. But in 1994 you could smoke and flirt indoors and blow smoke all over the room or in somebody's face. At any pub at any moment you might look up and see the flickering red points of cigarettes being lit, the quick flash of a lighter. In Spain I fed Euro coins into the telefonica beneath its round plastic dome and tried to cry softly so that my voice wouldn't echo up the stairs into the ears of my neighbor staying in Lorca.

In Spain I wrote through fits of rage, my little set and barely controlled grief fires that ultimately contained nothing, pounding away at the keyboard in my monkish twin bed, on the terrace with the ants and the persistent biting flies, sweat dripping down my legs from the buzzing hot computer on my lap, at the drafting table at the end of my tiled corridor that was meant to be used by an artist who cancelled her residency at the last minute. I did cardio drills using my friend Amy's DVD – jumping jacks and high knees and fast lunges in my underwear until I almost passed out from the heat. I roamed around at weird hours eating bowls of muesli with fatty whole milk and cup after cup of strong filtered coffee with heaping spoonfuls of sugar. At dinner I smiled and laughed and ate my dinner and then went up to my computer and raged at the lump of mountain divided into even squares by the bars on my window, watched the nightly scattering of limp fireworks over the highest point of the pueblo, an abandoned hotel half-built and baking in the sunshine. The Spanish economy is in the shitter, with 40% unemployment, folded up cafes and nightclubs along the Mediterranean, half-finished luxury hotels, young people protesting in the street. The cover of The Economist warns: "If Greece goes…" Spain is not a "robust" economy, it's a desperate one. The government changed the motorway speed limit from 120 to 110 kmh in the hopes of collecting money in speeding fines, but everyone obeyed the new rules, and so three weeks later they changed it back. This story, told to me by a British shopkeeper, prompted him to refer to the current Spanish president as "a tit." Spain, apparently, has less potential than other countries in the EU; it's one of the bad seeds, one that could make all the other plants rot.

On the nights when I did walk into Mojacar the bars were empty except for a few tables where bald or gray-haired men wearing flip-flops sat chain-smoking over tiny cups of espresso. When I got lost on the unmarked roads I asked a man working in his garden – "pueblo?" – and he made a circle in the air and stuck his finger through it. "Gracias," I nodded, not sure if he'd offered me directions or a lewd gesture. Later that week Other Em and I watched a first communion procession, the tiny brides of Christ parading down a thin cobbled street, their stiff white dresses going limp in the heat, the priest sweating and swaying and singing off-key under his moving tent, cross held close to his chest, women holding open fans next to their faces to block the sun and rolling their eyes at the priest's singing voice. I made plans to go to Morocco – my Tay-Sachs gene originated there, so why not check it out when I was already this far south? Maybe I'd meet a relative wandering through a souk in Marrakesh. I realized I'd become too skittish to travel on my own. Newness frightens me. I find this depressing. I've always liked reinvention and renewal – some might even accuse me of being addicted to the "fresh start." Instead I sat at a desk in a turret and wrote all day and into the night.

This was not necessarily a healthy way to live. Kierkegaard wrote Fear and Trembling in a fit of grief; he wrote in his journals that he sat down at his writing desk, barely to see out of his own eyes. Fifty years ago this week Ernest Hemingway shot himself in the head. His behavior up until that point had become increasingly erratic and paranoid. In Casper, Wyoming he tried to walk into a propeller when the plane he was traveling in landed for refueling. I was happy to be writing in Spain, but I also felt the tip of the propeller against my cheek, the cool, bright point of the blade. Casper is a flat city of wind. People talk about it as a given, like the sun rising. Wind is weather: "the wind today." If a fire started there it would burn all the way to the horizon. In the same newspaper where I learned about Hemingway and read the latest developments related to the Los Conchas fire near Los Alamos, I found these stories: the parents of an abused girl were given prison sentences, I can't remember the length of time, but it could never be long enough. The girl was 14 and had maggot infested bedsores and weighed 45 pounds. She had cerebral palsy and was mentally retarded. The murderers of another seven-year-old girl who was dumped in a ditch in 1958 were found. Her family lamented the loss of this "athletic and beautiful" girl who was "going to be something." I read another story about migrants who are brutalized on their journeys from Mexico and Central America. One of them asked the reporter, "Should I go back? What do you think?" On another page I learned that a lock of President Lincoln's hair is worth about $35,000 at auction.

There are so many rooms in the house of grief, so many basements without lights, and so many people inside, waiting to go somewhere else, to cross some border, to live, to die. In the Denver Airport on my first trip back home during this fire season I ate a bowl of pasta covered in oil at the bar attached to a bakery famous for its cookies; an odd pairing, but apparently a popular one for those passing through to wherever was next. On either side of me sat men with empty pints stacked up in front of them, light slanting through the drying froth. The waitress looked at her drooping face in the mirror and sighed. She wasn't pretending; she wasn't going to make nice while grumpy, lonely people ordered drinks at her bar. "Everyone leaves," she said, shrugging, when one of the drunk patrons asked her if she liked her job.

"Can I pay you for this big cookie?" Someone was asking.

"No; I can't ring up cookies at the bar." The bartender slid a tube of lip gloss from her jeans, slowly applied a slick pink coat, and slipped the tube back into her pocket.

"It's just a cookie. Can't you just ring it up here?"

"It's a cookie, which means it's not a drink. So, no. No, I can't."

I am a skeptic; who isn't? A cookie is not a drink. The bartender started up the dishwasher, a surprisingly domestic sound: dishes being rocked and rinsed, the soft thump and roar of clothes tumbling in the dryer. Those sounds from the closing, dozing edge of the day, sounds from home. You choose a particular door and you cannot go back, you cannot walk back through it.

That little girl who died of starvation and maggot-infested sores was a human being. So was the little girl with "potential" who was murdered and dumped in a field. So are all the nameless, faceless people traveling on hot trains and being raped and robbed and beaten trying to get to this country that will brutalize them further. They are human beings. They don't need to have potential to be valuable. And they live, even though their lives are truly the stuff of other people's nightmares. Their stories matter, even if we never hear them. Sitting at Java Joe's with Ronan on my lap, talking to our new friend Bob, who reads the paper there every morning, I read those stories and felt myself flinch in every possible way. Sure, I am a writer, it's what I do, but it's not the sum total of who I am. We are not what we become, what we do – are we?

And who has the right to life? In many pro-choice arguments, the deformity or ill-health of a fetus is cited as a reason to abort. I get it and don't judge it and I absolutely believe in a woman's right to choose, although I do realize that according to this criterion Ronan and I would both fall in the "abort" category. I can be pro-choice while admitting that the tenor of the debates can still disturb me, or least unsettle me. If my mom had not been my mom and ultrasound had existed when I was born, I might have been terminated. Nobody wants a baby with a birth defect – it's all over warning labels. ____ CAN CAUSE BIRTH DEFECTS. But I did live and now I'm here and I'm a human being. Even Casey Anthony –  as repulsive as I find her, as sick as those pictures of her daughter make me feel, the little girl, now dead, balanced on her mother's knees and smiling –  is a human being. Making her a monster is the obvious choice; it's too easy. If she is a monster, then everybody is. And we certainly all have the ability to be monstrous; that's part of what makes us human, too. I would never have wanted Ronan to suffer a single day with Tay-Sachs, but he is here and I do love him and he's a human being. We count.

Whatever that means. Who counts in this world and how much? Who does the deciding? Who has "potential" (i.e., value) and who does not? In 1990, before I went to Los Alamos for the first time, our pastor showed us a poster covered in hundreds of black dots. He said, "One of these dots represents the amount of nuclear power needed to blow up the world." Then he told us that the hundreds of block dots remaining symbolized the amount of nuclear potential the United States currently possessed. Potential: a tricky, slippery word.

Parenting Ronan for these three years is likely the most important and most difficult work I'll ever do. There is no task here except loving. It's so simple that it's almost impossible. I will not be negotiating naps or video game time with Ronan. I will not be having awkward discussions with him about sexuality, or later, more in-depth conversations about the meaning of life. He doesn't care. He makes me not care. He makes me just want to say what I want to say and not care. Which makes me, weirdly, care very much about saying it well.

And there's ego again, something Ronan lacks. People try all their lives to kick the ego; Ronan has no choice. I'm all about ego; sometimes I can feel it pouring out of me. I love love. I love accolades and awards and attention. Who doesn't? I was taught not to brag, so instead I brag in my head. I like to be the sparkle in the party, the glitter in the conversation. Or I used to be. What's at the root of this desire? Fear. Fear that I will be forgotten. That my life doesn't matter unless it matters to everyone else. Ego ego ego. The love I have for Ronan obliterates the ego as much as it uplifts it; maybe both are required. I'm not worried about maximizing Ronan's potential to do something important with this life. Instead, I'm accompanying him through his short life, to its end, from first to last.

I've gotten it wrong for all these years, fretting around about what people think of me, if they see my "potential" or "value" however that is measured: looks, achievements, money, number of beautiful children, number of books or publications or famous friends, etc. Everyone has a list and we all check it twice, three times, again and again and again. It doesn't matter if the world loves me, and it doesn't even matter that much if I love myself. It doesn't matter if anyone loves what I write, or cares about it after I die.

What does matter is love, given freely and unconditionally and without agenda. That is what is being asked of me. I love Ronan, this unique being, this created person, this human, without thought to what it might lead to for me, what it might say about me, or what it might make others think about me. I didn't always, but I'm learning. People like to think is brave, but it isn't. It just is. I love him now, because he's my son and because it's inevitable, and I'll continue to love him for the rest of my life until I die, because that, too, is inevitable. And it doesn't matter if people think the situation is tragic or the saddest thing in the world. This is MY son, my baby, my "handful of earth," as Neruda says, sitting on my lap, coo-ing and squawking into an approaching thunderstorm under a dropped and thickening sky, the wind whipping through his hair as if he were on a roller coaster, feeling the fresh change in the air. Oh, I love him. But that love will not chain him. There is nothing expected of or for him. In that love he is free. That love leaves people speechless; there is no chatter around that love because it is too busy being settled and calm – it has no more thinking to do. People pay a lot of money to feel the way Ronan feels every moment of his day. He doesn't reflect the love between Rick and me, he does not say anything about our relationship, he is not the embodiment of our hopes or dreams. He reflects himself. Like those people trekking across borders, stumbling across steaming deserts, like that girl who was denied her basic needs, including love, he is a person living in the world right now, and when he's dead he will have been a person, a human being, who lived. He matters because he is and when he's gone he will have mattered because he was.

Ronan is making me realize the writer I was before I decided to say I was a writer. A writer who wrote on the 66 bus to Harvard Square on the back of receipts and with pens borrowed from a nearby passenger (I still haven't mastered that "take a notebook and pen wherever you go" habit that is supposed to be so important for creative minds); a writer who wrote through the lectures in French Feminist Theory (Lacan, you are yet a mystery to me); a writer who wrote sitting on a bag of ice in a steamy top floor apartment in Boston during the summer; a writer who wrote with gloves in an unheated dorm room in Dublin. I didn't give a rip who saw what I was writing then; I was just doing it. As my friend Chris says, "We just need to write our books." The rest of it doesn't matter. The love, the accolades, whatever. I can write, I cannot write. Ronan has reminded me that the only way to be a writer is to be one with nothing – and everything – to lose.

After the July 4th party at Rob and Lala's I give Ronan a massage with his mango scented body butter, which reminds me of all the late night baths I took at sixteen, combing through the bubbles, searching my skeletal body like a map for what was wrong, tearing up the body like a piece of lace, adjusting, stretching it to fit those tight corners, groping for the seams as if finding them would give me permission to rend them. I was so scared of the body, so scared of being inside individual moments that I obliterated them, starved them away, and then went back during bath time, scouring and searching for damage, rubbing mango body butter into skin and bones. I was too tired for the hear-and-now, and that was a relief. Not anymore. The here-and-now version of parenting is the only one I have, perhaps the only one I ever will have, and yet it isn't about having anything, not really. It's about living, which is different than having, claiming, owning, carving, grabbing, sorting, judging.

Last year Ronan snored through the fireworks that boomed through our Los Angeles neighborhood, rattling the thin walls of our studio apartment. We went to a pool party in the Palisades and I bounced him as he screamed and then, in a rare moment of calm, chatted over his head to someone who was involved in the making of Law and Order: Los Angeles, which I now watch on Hulu. A different year, another life. In those twelve months a new world has bloomed, terrible and true.

This year in Santa Fe individual fireworks were discouraged because of the fires and the drought, but there was still a city display visible from our back yard. Rick and I watched a few explode in the middle distance, and then we went inside, slowly closing the door that leads into our house, careful not to wake our child sleeping in his room.

Fateful Places

Guest post by Claudia Hajian

My neighborhood shopping center is one of those places that thinks it's totally awesome, but really it's not. For years now this sprawling piece of real estate in northeastern Queens has been renovating, constructing, expanding, displaying signs that try to whip us local consumers into a frenzy: "Coming soon! Panera Bread!". Wow. Panera Bread!! Just when I thought they couldn't top the commercial retail triumphs of GapKids, American Eagle Outfitters, Steve Madden shoes, and Victoria's Secret. But like everyone else I go to the shopping center, since it does offer some sources of physical and mental sustenance; it has a health food store and a Barnes and Noble. So nourishment can be found in the form of organic tofu and new non-fiction, respectively.

A few months ago I was driving around the parking lot looking for a space. As I turned slowly into one of the rows, I spotted something unusual on the ground ahead, right out in the open. "What is that?", I wondered. Dark grey. Furry. Scrawny. The animal lover in me groaned, "oh no". As I came closer and rolled down my window, I saw that my worst fears were confirmed. It was a dead cat. A dead stray cat, flat on its side, pink tongue protruding from its mouth. There were no cuts or visible injuries anywhere on its body, except for one red, bloody eyeball bulging out of its socket. A screaming red, shiny wet marble that had violently popped out from trauma.  Oh my god. That eyeball. I knew right then and there that the visual image of that eyeball would stay with me forever. It was a gruesome, frozen vestige of the cat's final moment of fear and panic, when it was hit, struck, knocked over by a metal monster, a few yards midway between a Men's Wearhouse and a Duane Reade. That's where the friendless little cat died. A cat that made an unlucky wrong turn somewhere, unwisely crossed a heavily-trafficked Queens boulevard, when it should have just stayed away from that cemented acreage filled with blind spot prone SUVs and joyriding local kids. Oh little fella . . . how I wish you had kept to lurking in the gardens of homeowners on the other side of the street.

My heart broke for that cat. Poor mangy thing, lying there lifeless, ignored, unmourned. So after parking my car, I mourned for it. Nobody else was going to. I also dreaded its inevitable disposal at the hands of the mall maintenance crew. I suspect that a garbage bag and a dumpster were involved.

But it was not the death of the cat in and of itself, sad as that was, which so disturbed me. It was that awful, impersonal spot. If I had encountered the dead cat, say, in the park near my house, I would have found the scene far less heartbreaking. Why? I suppose because a quiet, pretty, undisturbed wooded area, on top of crunchy fallen leaves, amid shrubs, tree trunks, and wildflowers, just seems a nicer, more peaceful place for a creature to take its last breath and begin its journey into the afterlife. With birds chirping in the branches above, the cat's body would break down and decompose into the organic matter of Mother Earth, to eventually give life to new living creatures. If we believe that physical surroundings contribute to spiritual transformation, most would agree that nature beats a parking lot every time. At this point, I wish I could write intelligently on the connection between energy and matter, but I can't.

"Where" questions infiltrate our conversations and impart precision to our biographies, our memories, our identities. "Where were you born?", "Where did you go to school?", "Where did you two meet?", "Where were you on 9-11?". We heed old sayings about being in "the right place at the right time", "there's no place like home", and let's not forget the 1970s classic "Your place or mine?" It's only logical to add "where" a life ended to that list.  Whether we realize it or not, places matter. Places shepherd us through life, either as rudders or anchors. Restless small town dreamers may uproot and answer the beckoning call of a big city, while content small towners are happy to stay and dig their roots down even deeper. Religions acknowledge the significance of places with reverence. In Christianity, the sites of Jesus' birth and death are holy places. As is Mecca. And the Temple Mount. And Lexington and Concord. We consecrate land on which some profound event, or miracle, or tragedy, took place. The mountains of Little Bighorn in Montana, site of Custer's Last Stand. The beaches of Normandy where allied forces liberated Europe. And for some of us, even the courtyard of the Dakota Apartments on New York's Upper West Side where John Lennon was shot. Places where people died hold vibrations and auras. They rattle and recollect. Places tell stories both great and mundane. Stories of births, deaths, successes and failures, battles and confrontations, planned gatherings and chance encounters. They are the sites of pilgrimages and shrines. Places own and absorb mortality. Places are the ultimate witnesses.

In December of 2004, my father suffered a fatal stroke. He collapsed on the floor of his bedroom in the home he built in 1968 on an abandoned lot in Queens. He died in the home he cherished, with his wife of 44 years just a couple of feet away. For months after Dad's death, my mother, my brother and I felt some form of "relief" that at least the stroke didn't happen when he was crossing a busy city street. Or driving. Among strangers, or alone. No. My father valued his home and family above all else. He was not a traveler or a seeker of things in unknown places. He was not a mountain-climber or a daredevil. So although my father's death was sudden, searing, and catastrophic, it was spiritually harmonious in that he died shrouded in the familiarity, stability, and warmth of his home. To this day, I cannot enter my mother's bedroom and stand in that spot near the bed without experiencing a palpable sense that it was the spot where Daddy died. It is both unsettling and comforting at the same time.

We are inclined to attach meaning to the death places of individuals in an attempt to make sense of the senseless and come to grips with death itself. But there are instances where the symbolism speaks for itself. Poetic ironies, or consistencies. finish off the narratives. Elvis Presley's death in his Graceland bathroom; an indignity, the ignominious end of a once-charismatic, now bloated man undone by his own excesses. 24 year-old James Dean's death in the twisted wreckage of his Porsche on a California highway: an icon in the making, American mythology at its finest. Marilyn Monroe's death on her bed: Hollywood's most enduring sex symbol, nude, sprawled on her sheets, the mysterious forces of her demise having visited upon her in the night. It's hard to deny that some death places finalize the individual life in a fitting, albeit tragic, fashion. So maybe it is equally fitting that a homeless, solitary cat met its fate in an inhospitable spot like a shopping center parking lot. And that a hardworking family man died in his home.

For most of us, where we die will likely be unplanned, possibly random. We can hope that we take our last breath in a place of familiarity, even intimacy, surrounded by loved ones and the solace of hand-holding and tender words. But that scenario is one of preference, not predictability. The truth is that much of it will make no apparent sense at the time. Each of us will die however and wherever it happens. But when it does happen, that particular place -  that spot right at that moment – will belong to us.

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Claudia Hajian is a professional artist's model in New York City. She writes about art, modeling, music, animals, life and love on her blog Museworthy.

Sitting With It

To Ronan's Mom from Mary Rapp (Emily's mom)

I don't do facebook, twitter, text, or "blog". Also, I'm not a writer (although in seventh grade I was awarded a wristwatch as first prize for my paper on Rock Hudson, entitled "Don't knock the Rock"). However, I have decided to step out of my comfort zone and offer a "guest post". I realize this is very risky as so many of your readers are great writers, but as the guest writer colleague in one of your classes that I attended recently in Santa Fe said, "Writing does not have to be perfect, just good enough." So here's to "good enough!".

We've shared a lot of experiences as mother and daughter (some probably best left "unblogged!"), and made some great memories that I will store up for my nursing home days: strolling the streets of Dublin and Trinity College campus, driving through the hillsides of Ireland with the side mirrors missing on the rental car because I didn't have the hang of driving on the opposite side of the road and hit a few things on the way, driving cross country from Wyoming to Cape Cod with an 80 pound geriatric dog riding on top of the suitcases in the back seat who even though he was almost toothless and blind in one eye managed to sniff out a day old scone, devour it and vomit all over the inside of the car on the first leg of the trip, hearing you read for the first time as a "fellow" at the James Michener Center in Austin, Texas, driving into a small dusty town in TX that made the scenery from "No Country for Old Men" seem like paradise, then sitting in a stuffy, overcrowded county courtroom filled with men and women in orange jail suits complete with chains on their ankles and wrists as sweat dripped off of everyone's faces as we waited for the judge to declare the legal end of a painful marriage, hosting your reception in West Hollywood after your reading of your first book (Poster Child), sitting in a gas station in Craig, Colorado listening to you talk for an hour about this guy that you had just met who was really smart and made you laugh, salvaging through the boxes for my wedding dress and shocked when you actually wanted to wear it, being in Los Angeles when Ronan was born and watching you embrace motherhood with such zest and compassion.

But lately I don't seem to communicate with you very well. It has been five months since Ronan's diagnosis and I still can't find the right words. I feel that in the past I've always been able to say something that helped or brought you comfort in difficult times in your life. But this seems so different, so unreal, something I can't seem to wrap my head around. So, I say things that aren't really helpful, or that you no longer believe, or that just annoy you!

But, as Oprah says, "some things I know for sure".. And so on this day, I want to try and share some thoughts with you about a few subjects I have been thinking about.

GRIEF:

Most people my age are not strangers to this five letter word. I lost my mother when I was 24 years old. I thought the emptiness as a result of her passing would never go away. You asked me once if I still remembered her after all these years (43 this August). And I told you, "Yes, people you love are always a part of your soul". We all know that grief comes in stages and waves. But experiencing the grief related to Ronan is like grief on steroids! It has such power!! It kicks me in the stomach and leaves me in a heap on the floor. This grief has no manners, intruding and interrupting life, sometimes at the worst moments. Like when I was excited to select Ronan's first birthday cared only to find that every card I opened and read talked about the things he would be doing in the next year; but I knew none of those words were true. I felt the emotion overcome me and I hustled off to a corner of the store and did deep breathing until I was calm enough to walk out of the store to the safety of my car.

This grief is the worst bully, because it is persistently and relentlessly defying all the resilience and survival skills that I think I have acquired in my lifetime.

This grief has no boundaries. It invades my life so that some days I feel like I am walking in cement. It causes me to forget birthdays, anniversaries, lose keys, lack focus, even misplace my "to do" list!

This grief is mean as sometimes I say things or at least think things that are better off left alone!

When dad graduated from seminary we were given a pamphlet titled "Running through the Thistles." It had to do with change and loss. I guess they were preparing us for the many moves that clergy families might make in the lifetime of their ministry. I didn't give it much thought as a young bride, but I have come to understand the wisdom of that little pamphlet because that is what I believe grief and loss are really about. You have to go through the pain and the prickles to get to the other side. You know it is going to hurt like hell, but that with time some peace and sense will come to your universe.

GENEROSITY:

I grew up in a home where generosity was modeled as a way of life. No one ever talked about what it was or what it meant, my Mennonite grandparents just simply lived it daily. I've watched my brother exemplify this in his life style and our family have all been recipients of his generosity.

You, Rick, and Ronan have had such an outpouring of generosity demonstrated by people all over the world. I have been amazed and ever so thankful for your family and friends and for the consistent support they have been to you. They have left their families and jobs and traveled miles to be with you and Rick and to meet Ronan and spend time with all of you. It is a testimony to the relationships you have built in your short lifetime.

We have also experienced much generosity from people we have never met until you moved to Santa Fe: R and L and their family, N and J and J, all who opened their homes to us so we could come and help you, yet all have some space and respite. And of course the support and love that dad and I have felt from our friends and family. I fine it truly amazing!!

GRATITUDE:

When you were a baby, I would rock you to sleep while singing the old hymn "Count You Blessings".

When upon life's burdens you are tempest tossed

when you are discouraged thinking all is lost

Count your blessings, name them one by one

And it will surprise you what the Lord has done

I sang that song as much for myself as for you. I needed those words because they comforted me and gave me hope.

I have had a difficult time with hope these past months! It seemed to elude me, dancing in the shadows, only catching glimpses of it in friends or families' comforting words or gestures. I cannot live without hope! So, I began naming three things I was grateful for each day. Yes, this is certainly an exercise presented in all kinds of self help books out there. Therapists recommend it; small groups praise its power. I resisted, thinking it was probably just another silly exercise.

BUT, it did have power, realizing that even in the worst of circumstances we can be grateful for something. (Even if it is as mundane as the wind not blowing in Cheyenne today!). And I am always so grateful for Ronan and his chubby little body and infectious smile, and what joy he has brought to our lives.

Finally, I know that there are other mothers whose daughters are healing from a painful divorce. or estranged from the family, or dealing with other difficult problems, and they are asking the same questions that I am asking. Wanting to be supportive but maybe not sure how. I am not alone in this dilemma. I am not unique. I am just like other mothers trying to find my way in uncharted waters wanting to be there for my daughter.

Recently, a friend suggested that I approach this unknown journey we are embarking on with Ronan by learning to "sit with it." I was confused and very skeptical. After all, I make "to do" lists, have a schedule, and love a plan! How do you "sit" with something as difficult as this? For me, it was accepting that I cannot change this horrific reality. I cannot "fix" it (although that is what I always want to do for you), and the worst reality is that I cannot take away or shield you from the pain that only you as Ronan's mom will endure. So I am praying for courage and Herculean strength. No miracles or unrealistic expectations. I am "sitting with it".

Several years ago I bought a framed Story People picture by Brian Andreas that hung in your office. It reads:

There has never been a day when I have not been proud of you, I said to my daughter. Though some days I'm louder about other stuff so it's easy to miss that.

So today I am writing because I do not want you to miss that!!! I am so very proud of you!! YOU are a great Ronan's mom! You have shown the strength, persistence, and perseverance that you have always possessed, only this time with unstoppable passion. Keep that up! I am coming right along beside you because now I know what "sitting with it" means. I am learning it from you and Rick!

Love ya,

Mardog

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Mary Rapp is a retired school nurse who has spent a significant part of her career working with special needs students and their families.

After That, You're Happy

Guest post by Jennifer Levin

If you're reading this, you already know we won't be seeing each other again.

Thus begins the letter my therapist, Dr. A, wrote to her patients before she died in early May. I picked up my copy about ten days after her death, from the hallway outside her office in an old adobe in Santa Fe, New Mexico. The place was adorned with vases of flowers and sympathy cards addressed to Dr. A's husband of more than forty years, the man who'd had to call each of her patients twice, first to tell us of her death and then to arrange private pick-up times, so we could get our letters without running into each other. I felt guilty at the sight of all the offers of condolence. I hadn't thought to bring anything. I have no idea how to handle death, what you're supposed to do.

I took the letter to my friend Jess's house. She'd suggested I come over since my husband was at work, so I wouldn't have to wait or read the letter alone—just in case. Neither one of us knew what "just in case" meant, but I was indeed frightened of what might be in there. I sat on the couch with a glass of lemonade. The letter wasn't quite a full page in length, and there was nothing to be afraid of. As I read, my shoulders relaxed and I was finally relieved of the sensation of fingers digging into my solar plexus, which is the defining physical sensation of my existence. I handed the letter to Jess.

"That's so Jewish," she said after she read the opening line. "So final. No 'we'll see each other in the Kingdom of Heaven.'"

I said "I think she was Buddhist, actually, but she had no idea what was going to happen. Blah, blah, blah—we die and it's over. I'm pretty sure she's haunting me."

If there's one thing I love about living in Santa Fe is that I can say I'm being haunted and no one bats an eye. "What's that like?" Jess asked.

***

In late August 2001, I was working in PR at the College of Santa Fe when my boss accused me of ruining Staff & Faculty Convocation, the annual end-of-summer ritual of academia designed to set tone and priorities for the coming year. At a panel discussion about the topic, I made some comments about student drug use and harm reduction with which my boss either disagreed or misinterpreted. She called me into her office to tell me that my negativity had brought everyone down and she was mortified by my lack of judgment.

"You ruined the whole day," she said.

That she was unhinged and I knew it was irrelevant. In the days before Dr. A, an accusation such as this was way more than my mind and body could handle and remain connected to reality. I shut myself in my office and rocked furiously in my desk chair, unsure of how I could ever come back to work. I wasn't sure how I could get through the last hour of the day and then drive home. How could I possibly drive home? How would I make it through the night? I was terrified to wake up in the morning. I was going to get fired and then I would lose everything: my boyfriend, the love of my family, my sanity. I would become instantly incapable of clothing and feeding myself. And then I had one clear thought, though it was closely followed by many more dangerous ones: I can't do this anymore. How will I handle it if something real happens? What if my boyfriend leaves me? What if he dies in a car accident? What if my dad dies? What if I get into a car accident? What if I get cancer? What if the college goes bankrupt?

From my desk drawer I fished a torn-off corner of paper on which, several months earlier, I'd scrawled the names of three therapists dictated to me by my primary care physician, Dr. G, who'd insisted that if I didn't see someone about my stress level, she was sure I was going to have a heart attack by forty-five. I was twenty-seven. It seemed a long time to wait when I already felt so sick all the time. I stared at the scrap of paper until Dr. A's name appeared to lift itself into the air and shimmer. I left her a tearful message about ruining Convocation and resumed rocking in my chair and panting.

She called back in minutes and offered me an appointment for the next day.

***

I have chronic Post Traumatic Stress Disorder. I'm hyper-vigilant with a high startle-response. I somaticize trauma, which means I'm always in pain or sick; when I was a kid I got strep throat and sinus infections several times a year. The things that have happened to me are the stuff of Law & Order: Special Victims Unit, without the presence of law enforcement. The details are personal, but the subject-headings include Prolonged Sexual Abuse, Mental Cruelty, Neglect, Medical Abuse, and Rape. Before therapy, my entire day was routinely plunged into fear and chaos because my awful boss scowled at me in the mornings instead of saying hello. I'd never in my life slept more than three consecutive hours, and what little sleep I got was disturbed by vicious nightmares. I usually woke between fifteen and forty times each night, frozen to my bed, sure someone was watching me from the doorway. Before therapy, I believed that everyone in my life—co-workers, friends, my boyfriend (who is now my husband), my family, even my twin brother—secretly hated me and was hoping I'd eventually take the hint and leave them alone. Before therapy, I thought if I disappeared forever I'd be doing the world a favor. Anyone who said they loved me was a liar, and I craved the lie.

Dr. A changed everything, and after nine and a half years, we were coming to the end of therapy. Lately, we'd been talking about whether or not I deserve the life I'm currently living—as in, Do I Deserve to Be Happy—with Dr. A falling firmly into the "yes" camp.

"All I ever wanted to be was a writer. I never had any other plan," I would say every couple of months. "And now I actually make a living this way, and it seems ridiculous. Who gets to do that? Surely something very bad is about to happen."

"You worked hard for this," she would say. "You've come so far."

On April 20, when Dr. A called to tell me she was back in the hospital, I was at a party at Jess's house. The occasion was the twentieth anniversary of a car accident that put her in a coma and left her with a traumatic brain injury, PTSD, epilepsy, and a variety of other chronic medical conditions. Usually, as the anniversary of the accident approaches, Jess goes into a funk and doesn't want to get out of bed. She hates the smell of spring and spends a lot of time perseverating on what might have been. This year, she decided to have a dance party, complete with a DJ, so all her friends could celebrate her being alive. It was raucous. I took my cell to the corner of the backyard so I could hear Dr. A. She said the doctors had found the source of the infection and she'd be "back on the horse" the following week. She wanted to know how I was doing. We hadn't been having regular sessions because she'd been in an out of the hospital, dealing with whatever was making her sick, for several weeks. And I'd been fine, really fine the whole time, until that very week, when the nurse practitioner at my doctor's office told me I needed some invasive testing.

"I'm having a little trouble existing in the place between perfect health…and death. It's like there's no in-between, which is ridiculous. People live sick. I live sick. But this is different."

"Well, we certainly need to talk about that," she said. "I'm telling you from my hospital bed that there's a lot of space there. I'll see you next week. Have a wonderful time at your party!"

She never left the hospital. I never saw her again. And then she died.

***

When I was a kid, nothing bad ever happened to anyone. (Set aside what was happening to me—I did.) In the world in which I was raised, child abuse and incest happened only on TV, in movies like Something About Amelia, or possibly in other parts of the country they talked about on the news. No one I knew died; none of my friend's parents were sick. My parents weren't religious, though I'm Jewish by birth. My mother had strong opinions about other people's belief systems—Christians who believed in God were stupid; Jews who sent their children to Hebrew school and gave them bar mitzvahs were rich and showing off. When my brother and I were nine, they came to the sudden realization that we had no idea who Adam and Eve were. We'd seen some sort of children's show about the first man and women on earth, and though we very excitedly told our parents about this engrossing tale, we kept forgetting Adam's name, so they enrolled us in Sunday school to fix our ignorance. We attended for the better part of a year but then my dad decided my teacher had spent far too much time on the story of Abraham and Isaac, and yanked us. To this day it's the only bible story with which I have any familiarity. A couple of years later my parents started hauling us to a Wiccan sanctuary in northern Wisconsin, which lasted through the other side of their divorce. When I was eleven, my mother came out as a lesbian and my dad moved across the country.

When I was in high school, a couple of people I knew committed suicide. My mother forbade me from attending the wakes and funerals, or from talking about it. She told me I didn't feel sad, that I just thought it was cool to feel sad because I loved the drama. I had no idea what to think. In college, my roommate, Leigh, was deeply troubled, a bulimic who developed a cocaine addiction while I knew her. She was a good friend until my limited capacity for understanding that other people's problems were real and her limited capacity for functioning outside of her eating disorder canceled each other out and we stopped talking. She left college after one semester and died of a heroin overdose a year later, in October 1995. I was inconsolable and guilty, convinced that her death was my fault, because had I really been a friend to her, I could have saved her from herself. I spent the next seven years actively blaming myself, unable to let go, until Dr. A helped me see things differently.

A couple of days after Dr. A's husband called, I went to Chicago. I'd been planning a trip home for several months, and, before Dr. A died, I'd been looking forward to it without fear. I don't like to travel. Flying makes me nervous; getting to the airport on time makes me nervous; sleeping in a strange place makes me nervous. But I hadn't been home in years and I wanted to see my brother. And I want to be the kind of person who can stay in a hotel in the city she grew up in without having panic attacks. On my first evening in town, I walked through a downpour to get to a sushi restaurant. My brother and sister-in-law were sick of rain—Chicago had been getting soaked all spring—but I'm a desert dweller and hadn't walked in rain like that in over fifteen years. I turned my face up as the wind forced my umbrella to blow back; across the street was a turquoise awning, its white lettering announcing the name of a day spa—my therapist's first name: REINA.

"Are you kidding me?" I shouted into the water and the noise of the city.

"What's wrong?" asked my sister-in-law.

"My therapist's name! Writ large…on an awning!"

She smiled, possibly puzzled about my exuberance, and then the moment passed because we were hungry and getting drenched. That night, alone in my hotel room, after I got off the phone with my husband, the panic came. I took a pill and got in bed, tried like hell to let my thoughts dissolve as I waited for it to kick in.

"What am I afraid of?" I asked myself.

"Everything," I thought.

I'm Reina now.

Not a specter but an aural presence, not inside my head and not outside, either. "What do you mean?" I thought, and then I giggled aloud. This was very weird, yet it was happening.

You always called me Dr. A but I'm Reina now, and I can visit whenever I want. I have all these people I can still help, and now I can do it from the inside. It's not over.

I saw her sitting on a rock in a field, laughing with her friend Dr. G, my old primary care physician, who died last year from cancer.

Your dog is here. She meant Lola, my Chihuahua-Jack Russell Terrier mix that died last year, too. They were in Lola's field, the place I always picture her frolicking, free and off-leash, now that she's not here. Oh, Jennifer, Dr. A said just before I fell to sleep, we're going to get to know each other so well.

The next night, I stayed out late with some friends from high school. That day, one of them had had to put down the family dog, who was sixteen, and she was sad. I offered her Dr. A's theory on doggy afterlife. "She said there's a dog king who's in charge, and when your dog dies, he goes to the dog king and tells him about his life, and what kind of owner you were, and the dog king uses this information to send you your next dog, which is always the right dog for you. There's more to it than that, and she was more eloquent about it, but those are the basics."

Later, as I was trying to fall asleep, Dr. A chimed in.

It's the dog emperor, not the dog king, and you know those kinds of fine distinctions are important to me. She was laughing so hard she could barely get through the sentence.

"Since when? You always pushed me not to get so hung up on word choice."

No! It's totally important to me! Really!

"Are you being sarcastic?"

Who me? Never.

I laughed out loud. "You weren't though. You were never sarcastic."

That's because we were in session. It's different now.

***

As I write this, I am days from undergoing a biopsy on my thyroid. Despite the fact that thyroid problems are fairly common, and everyone has been telling me I'm going to be fine, I remain convinced I'm very sick, probably dying. In my darker moments, I've been dwelling on all the people who will hate me for getting sick, everything I will lose. I think the people trying to comfort me are lying. PTSD is the gift that keeps on giving—Dr. A compared it to shrapnel. No matter how many pieces you dig out, there are still more, hidden, waiting to erupt through the skin.

I spend so much time waiting to get to the next part, the part in which I get to be happy. And now, when there might legitimately be something to worry about, it seems like such a waste. After all, bad things happen all the time. Two weeks after I started therapy was September 11, 2001. A month after that, I was in a semi-serious car accident. The College of Santa Fe really did go bankrupt. The work of therapy has been far from painless. It got worse before it got better, but it really is so much better now.

Functionality has never been the primary agenda in the work we have done (causing, I'm sure, much occasional frustration), Dr. A wrote in her letter, but rather I have seen the task as one of igniting that spark within which can become the warming, sustaining fire of yourself, of your truth, of your victory over the unfortunate conditions that have surrounded your early years of development. There are no formulas for health, for wholeness. Instead, we have worked together to discover the individual patterns, the individual balances that your deepest self requires for an optimal life, externally and internally.

"You know," my husband said when I told him I waste time waiting to be happy, "you could just mark it on the calendar."

"What do you mean?"

"Pick a day. After that, you're happy."

Dr. A often referred to my husband as a saint.

A few days ago, I had a session with a therapist-friend of Dr. A's, after several people advised me that now was not the time to try to handle things on my own, because biopsies freak out even the well-adjusted. We talked about the space between perfect health and death, and whether or not I get to enjoy my life without feeling guilty. When I dug into my bottomless pit of a purse for my checkbook, I came up with a smooth chunk of amethyst. It was from Dr. A, who sometimes gave out pretty rocks after a particularly good session. It must have been floating around in my purse for months, since the first time I realized all I ever wanted to be was a writer and had become one.

In my better moments, I really do know that my husband, my friends, and my family love me, and that their love is contiguous. Jess tells me I should do what she does—write it down, big, and put it on the wall, so that when I forget, I can remember.

Jennifer in her Chicago hotel room.

P.S. - On June 21, I received a diagnosis of thyroid cancer. I will undergo surgery and radiation this summer and am hoping to be healthy again after that. All prayers (of all faiths) and good thoughts welcome, because it all counts, it all matters.

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Jennifer Levin lives in Santa Fe, NM, where she writes for Pasatiempo, the arts and culture magazine of the Santa Fe New Mexican. She is working on a collection of short stories.  Read some of Jennifer's work here and here.

Sacrament

Guest post by Barbara Pitkin

Today I went to the wrong yoga class.  I was running late (as usual!) and hadn't really paid attention to the change of venue indicated via email. Rushing into the building on the heels of a young woman with a yoga mat, I followed her into the studio where my regular class is held. I unrolled my mat and joined the eight or so students sitting facing the instructor, who—I realized just at that moment—was not Kristine. Since this was a special make up class, my first thought was that she was a substitute. But the other students seemed familiar with the opening routine, and this made me realize with growing discomfort that I was definitely in the wrong place.  There was om-ing. And long, lyrical chanting in a tongue foreign to me. Followed by more om-ing.

I sat in what I hoped was respectful silence with my eyes closed, trying to clear my mind and open myself to a new experience.  Yet all the while I was wondering just how rude it would be to stand up, roll up my mat, and try to slip across the hall to Studio 52, where, I was now convinced, I would find what I was looking for. Thankfully the instructor gently approached me after the om-ing had finished and gave me an out (she also graciously assured me that even though this wasn't Kristine's class, I was "in the right place" and welcome to remain). I made my exit and soon found myself in a more familiar milieu and my body and spirit moving and challenged in customary ways.

The irony of the fact that it was precisely my lack of attention and mental focus that landed me in what was, for me, an awkward situation, was certainly not lost on me. And yet, as a result of my inattention, I gained new appreciation for the broad spectrum of yoga styles and experienced an unexpected sense of joy (or perhaps relief) for having found a practice that suits me. What I love about physical activity in general and yoga in particular is that there really is something that's just right for each individual body. That said, though, I'm a tad embarrassed to admit in this forum that virtually the only reason I do yoga is because I need to be more flexible.  I don't really get the breathing aspect or the setting an intention for your practice, though I am completely into the way Kristine sometimes tenderly massages our scalps with lotion during shavasana.  The bottom line is that I have extremely tight places in my body, and I'm not committed enough to stretching them out on my own.

Despite my utilitarian attitude toward my yoga practice, I'm convinced that physical activity is not unrelated to spiritual stretching, even if the two not as integrated in my exercise routines as I'm guessing they may be for the practitioners in the class I stumbled upon.   Spirituality is no mere inner dimension of life, but an element of being human that emerges out of, exists in constant interaction with, and flows back into our corporal natures.  Ritual—sometimes mundane, undistinguished, familiar; other times uncommon and extraordinary—is the lifeblood of the world's great spiritual traditions.  Moving our bodies through our familiar and yet challenging religious routines nourishes our souls by connecting us to the fundamental ground of our existence.

In Christian tradition, a "sacrament" strictly speaking is a special kind of ritual action that, depending on the school of thought, imparts, symbolizes, represents, or reminds of the divine presence. Christianity, like yoga, has a wide variety of styles, and its rich diversity is perhaps nowhere more evident than in the vastly different ways of understanding and celebrating its two central rituals, baptism and eucharist (the latter also known as the mass, communion, or the Lord's Supper). In some traditions, such as the Lutheran one to which my family belongs, the eucharist is a regular feature of weekly worship; each Sunday we hear the familiar words, witness and perform the traditional gestures, join our voices in the usual prayers and songs, touch and taste bread and wine.  The liturgy is a multi-sensory affair that opens up the mystery of the incarnation, God in tangible form, hidden yet accessible in the material things of this world.

Baptism, unlike eucharist, is normally experienced personally only once in one's lifetime and, beginning in the early Middle Ages, usually took place when one was an infant. In sixteenth-century Europe, however, some religious reformers questioned the appropriateness of this practice for tiny babies unable to take an active part in the ritual. They advocated what came to be known as "believer's baptism," administered only to those who had made a prior profession of their faith and were capable of making a serious commitment to reform their lives.  Other reformers, however, including Martin Luther and John Calvin, adhered to the traditional practice of baptizing infants.  Calvin, for example, argued that Christian children already possess God's promise and love that are signified in the sacrament, and that they therefore have a right to the corporeal sign or seal imparted in the ritual.  For Calvin, baptism doesn't change anything about their spiritual or physical natures, but stands as a visible, tangible sign to others and, later, to themselves, that they have been embraced by God's mercy. It indicates their full status in the spiritual community and serves to sustain them in their future practice of their faith.

Pressing his case about not denying infants born to Christian parents their right to baptism, Calvin describes how through the ritual parents "see with their very eyes the covenant of the Lord engraved upon the bodies of their children."  And here he hints at a broader, more general notion of sacrament, as any kind of physical entity marked by God as a sign of the divine promise. Think, Calvin urges, of the story of the Noah's rainbow—like a piece of metal that receives new valuation when it is stamped with an official mark to become a coin, ordinary elements can take on new meaning as imprints of God's love.

Easier to say, perhaps, of healthy children, that they are loved by God and that their bodies—their tiny, vulnerable baby bodies—are holy and marked with that deepest of spiritual mysteries.  And, yet, I can't help wondering if there isn't something more to the sacramental joining of flesh and spirit, whether it doesn't point more toward a more radical, even disorienting, vision:  broken bread in the eucharist, broken bodies, a broken world—these are the places where God is.  Perhaps it's also where we don't want God to be.  It smacks of making everything so neat and tidy—so meaningful—if God is there, somehow. To say that there's something right when everything is so wrong.

The only child of Calvin and his wife Idelette de Bure—a boy—was born premature and died shortly after birth. So I can't imagine that Calvin was thinking about healthy children when he wrote that line—and given the high rate of child mortality in early modern Europe, it's unlikely that it would have been read that way.  It's hard to know exactly what it meant; easier, indeed, to speculate whether it has anything to say today, and, especially, to readers of this blog.

Perhaps the sacramental vision of children's bodies can be viewed as an invitation to view not only children but also parenting in a different light.  I'm afraid that a good portion of my parenting activity suffers from the same distracted mindlessness that brought me to the wrong place earlier today—particularly those aspects that involve physical care of my offspring.  Countless hours spent ensuring that they are dressed, fed, or getting enough sleep and exercise. Arguments over what they're wearing or eating or whether they do, in fact, need to take a shower.  Put on sunscreen! Don't forget your bike helmet! And much repeated in our household: Wash your hands!

One of the many, many things I have learned from reading Emily's blog is that all of the mundane, ordinary activities are anything but insignificant. What Ronan eats and all the ordinary rituals of each baby day, each exquisitely memorialized new experience, and above all Rick and Emily's loving care, all yield countless "transcendent moments" of connection and revealing the flowing, interpenetration of the ordinary and the extraordinary.  A sacrament—something right—in the midst of so much that is most definitely wrong.

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Barbara Pitkin teaches religious studies at Stanford University. When she was on the faculty at St. Olaf College, she had the privilege and pleasure of advising Emily Rapp's undergraduate honors thesis in religion. Her publications on children, parenting, and spirituality include "Honoring Children's Bodies" and "Are Children Human?"

Tír na nÓg

Guest post by Mel Jones

I know Emily because she was one of my writing professors, a mentor while I worked on my MFA. She helped me hone my craft. She's my friend on Facebook. She's my daughter's age. We love the Red Sox. We're both Irish. We exchanged a few emails, a year ago May, about fussy babies and the possibility Ronan had some reflux. I offered advice that my mother had offered to me, and her mother to her before that: keep him upright, feed him solid food (ignore the doctors on this one); buy a swing. I understood reflux. My son Ian had Reflux Apnea. He'd been in the hospital sixteen times before his second birthday. He stopped breathing several times a day, every day, for almost two years. I knew the things to do. It seemed natural to offer support one mother to another. It was a brief exchange, four or five emails. It was practical, to the point, advice.

I've never met Rick. Or Ronan.

I'm preparing for Ian's high school graduation. By the time this is published he will be a graduate. An adult, well technically anyway. He's old enough to drive, vote, fight in a war (we actively discourage that). He drives me crazy. He wants to be a teacher, a musician, a computer programmer, a political analyst. We're making plans for college, clearly a school where he isn't required to declare a major immediately. A political analyst? But there was a time when I wouldn't have believed this day would come. I see Ronan refracted through Ian. I see them, spectral colors from similar prisms, rainbows just beyond my grasp. Emily's pain a reflection of a place I once was. Ever so briefly. I've heard a doctor say, your baby's going to die. To me.

High risk: SIDS.

Full stop.

The color of life faded into a dismal gray. The music turned off. The universe collapsed silently in on me, a black hole, folding in waves that could just barely contain my heartache. A place too sad for tears.

I read, and reread, that first post on January 14th: heavy heart… Tay-Sachs… claim his life…

I wanted to say something eloquent and profound to her. But there was no practical, to the point, advice here. Just remember to breathe. I wanted her to know, one mother to another, that I knew that in listening to the doctor's clinical report she had died. All that she knew, all that she trusted as real, disintegrated into an unfathomable chasm that was once Emily. A place too sad for tears.

But I had no words.

The digital frame on the table beside me flashed pictures of Ian, small and helpless. Ian at a week, IVs and lead wires attached; at three months in a sailor suit, propped against some bohemian-looking pillows; at six months propped up against a chair covered by an Indian/Mexican blanket, an over-exposed picture that has an ethereal look about it. It and captures the heart. Ian first day of school, holding a parrot, a chicken, riding a horse, playing guitar, saxophone. With Santa, the Easter Bunny. Ian with long hair, short. Ian breathing.

Other pictures flashed on the frame too. His siblings, his dad, my mom, sisters, brother, Dad, my grandmother—Nana. Me, taut and tired; wraith-like. My eyes reflecting Bilbo's comment, I know I don't look it, but I'm beginning to feel it in my heart. I feel… thin. Sort of stretched, like… butter scraped over too much bread. One picture dissolved into the next.

Little Seal's blog, Ronan's blog, stared from the computer screen, a backlit glow in the darkening shadows of my living room. I was flooded with phantom sounds, breathing monitors, pulse-ox, flat-line, racing feet. I could hear the doctor saying, he cannot be alone with anyone who is not infant-CPR certified. Just breathe, Ian. Just breathe, Emily.

The sun set. Pictures flashed. And I remained silent.

The page blank.

I could hear Mr. E's Beautiful Blues playing in Ian's room…

goddamn right it's a beautiful day.

It's a typically Ian sort of song, dripping sarcasm. He views the world in a way most eighteen-year-olds can't. He has a way of blending the ethereal with the sardonic. It's endearing. I imagined him sitting on his bed looking at Tarot cards and waiting for Call of Duty to load on the Xbox. The song forced me to smile. My thoughts drifted to my grandmother, another person in my universe who delicately balanced this world with others. In my memory I heard the murmur of my grandmother's brogue singing… Tír na nÓg, little one, Tír na nÓg.

It's old Irish, pronounced Tír inna n-Óc, and means The Land of Perpetual Youth. The land beyond the edge of the map—Ireland's very own Never-Never Land. A place of simple and sensuous pleasure. It's the place where the Tuatha Dé Danann, the original Irish, the magic folk, settled when they left the surface. They went into hiding after losing a war. They sought a place to be safe from sorrow: a secret diaspora. A place filled with magic, fairies, and leprechauns. Ethereal images that capture the heart, edged with just enough mischief and sarcasm. A perfect secret hiding place filled with joy and magic. Stories that stir genetic memory. A genetic memory Emily, Ronan, Ian, and I share.

We hail from a people brave enough to go naked into battle and dare the world to take them on. Imagine a people needing a secret, magical place to conceal themselves and at the same time brave enough to face the world naked. The stakes are so high, the cost so unimaginable the only defense is the sheer force of passion. There is no armor to protect her from the world or her future. Emily's profound ability to share her story, to share her pain, reflexively with near strangers—with total strangers—reflects the courage of our forebears, the Celts.

I don't know Emily's family personally, but I know this family—in this moment; because I lived through such a moment in such a family. I want to share with them my own tears, and memory of tears. The sleepless nights, haunted dawns. Loneliness, God, the isolation. I know the immeasurable space between the word baby and die in a sentence. It is within that space that a mother dies. It's an alone-ness that nothing will fill, no friend or lover, no parent, or even another child. For this family, in this moment has reminded me how close to the precipice I have been. Grief is lonely and this family is fighting naked in the world pushing towards Tír na nÓg, a secret diaspora. A place to be safe.

My favorite Tír na nÓg story is that of Oisín and Niamh: they travel together on a magical horse, able to gallop on water, to the hidden island in the west and the hero, Oisín, spends some time there. Eventually, homesickness sets in and he wants to return to his native land. He's devastated to learn three hundred years have passed in Ireland since he has been with Niamh, though it seemed to him only one. He goes home on Niamh's magical horse, but she warns him that if he lets his feet touch the ground, he will be barred from Tír na nÓg forever; the truth is that the weight of all those years would descend upon him in a moment, and he would wither with age and die. While Oisín is searching for his family, he helps two men move a stone, and in the process falls from the horse and ages in an instant.

I remember in the darkest part of Ian's illness thinking, don't let your feet touch the ground, son, stay in the land of perpetual youth, where all things of beauty blossom: art, music, strength. There happiness springs eternal with no sense of lack or want. Every appetite is sated. Life. Tír na nÓg is a place where sickness and death don't exist. It's the place we all long to be.

I read Emily's blog every day. Friends have suggested that I am offering to bear witness, but that's not it. I read because for two years I lived under a similar cloud. I read because I have felt that terror, desperation, guilt, and loneliness. One day, in the not to distant future, Emily's story will move beyond my ability to comprehend. I read because it's easy to forget that Emily is not that unfathomable chasm. Emily is recording Ronan's journey. But for me, it is, more than anything, Emily's journey. And one mother to another, I want her to know, even in the loneliest of moments, she's not alone. And knowing that is so important.

In reading her blog, I am reminded of what mother means—in the archetypical sense. Emily is personifying what it means to be a good mother. She is strong, diligent, unrelenting, and yet, tender and loving. There is no sacrifice too great. She is the mother we all hope we never have to be. I want her to understand that she too needs to ride that horse to the land of perpetual youth. I read because the writing touches me deep inside. It is beautiful, transformative. It transforms me. So, Rick, Ronan, and Emily, as my grandmother would have said…

To Tír na nÓg! 'Tis a place with no sorrow, a place ya can't cry. Don't let the world trouble ya, ride with Oisín to the land of magic and dreams… Tír na nÓg

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Mel Jones had her own column in a local newspaper at 15 and was determined that she would be the next Shakespeare or Tolkien. Probably Erma Bombeck. But then life intervened. She grew up, raised a family, and wrote quietly everyday. Mel did her undergraduate work at The College of William and Mary, and graduate work at Virginia Commonwealth University, and Antioch University, Los Angeles. She holds degrees in History, English, Rhetoric, Literature, and Creative Writing (Nonfiction). Yes, she is overeducated. She has done extensive genealogical research, edited a now defunct literary journal, and taught children from kindergarten through college. She is currently the Director of a Huntington Learning Center in central Virginia. She recently had an epiphany, if she sent her work out more, she would be published more. She's working on that. Mel lives and writes on a small leisure farm west of Richmond, Virginia with her partner, parrots, and progeny.

Blog: http://melwalshjones.wordpress.com/ Twitter: http://twitter.com/#!/melwalshjones  Facebook: http://facebook.com/missmel58

Gale Force Winds

Guest post by Dani Shapiro

It happened in stages.  First, I saw something in my baby—a small, involuntary twitch accompanied by a flickering in his eyes that made me uneasy.  No, that's not exactly right.  The uneasiness was so deep, so internal, like something dredged from a place inside of me so dark and hidden I hadn't even known it existed.  Something's not right.

I called his pediatrician.

She cooed over the phone—a placating tone cultivated by certain doctors who assume that all new mothers are hysterical.  She told me she was sure it was nothing.  All babies twitch.  If he's still doing it by the time he's, say, eight months old, we'll look into it.

I tried to believe the doctor—God knows, I wanted to believe the doctor—but deep down, the uneasiness persisted.  We were living in Brooklyn at the time, and each day I pushed my boy in his stroller to the park.  I swung him on the kiddie swing.  I perched him on the edge of the sandbox.  I gaily called out wheeeee! as I held him, sliding on his chubbly little bum down the slide.  But all the while, something was thrumming, something that had begun to assume a shape inside of me.  White hot, sharp.  A blade of terror.

A week after I first called the pediatrician with my concerns, in an entirely unrelated incident—if we are to believe that incidents are ever entirely unrelated—a brand-new babysitter dropped him down a flight of stairs.  We lived, as I said, in Brooklyn.  In an 1850 Federal townhouse with a very steep set of eighteen stairs.  The babysitter slipped.  He hit his head.  He was rushed to the emergency room in Brooklyn, then transferred by ambulance to a hospital in Manhattan where he was observed overnight.  A CT scan showed a bruise on his brain.

Among the handful of moments in my life for which I am most grateful, surely I count this one: I had seen those small flickers, those twitches, those involuntary movements before he was dropped on his head.  Otherwise, for the rest of my life, I would have wondered.  Did the fall cause the seizures?  Was it—somehow, in some tiny way, by dint of hiring a particular babysitter, buying a particular house—my fault?  No.  I knew that these two facts were unrelated.  Something was wrong with my baby.  And he was dropped down the stairs.  Two impossible facts, pressed side by side like withered leaves.

I hesitate to even write our story on Ronan's blog.  Our story—I should say at the outset—had an unlikely, improbably, perhaps I should even use the word miraculous, ending.  Our rather, outcome.  Happy endings are the stuff of fairy tales.  My son, at age six months, after surviving being dropped on his head, was diagnosed with a rare seizure disorder called Infantile Spasms.  Seven out of a million babies are stricken.  Fifteen percent survive.

Seven out of a million.  Fifteen percent.

The enormous, profound difference, of course, between my son's story and Ronan's, is that fifteen percent.  There was hope, however small.  That white hot, sharp blade of terror because a white hot, sharp blade of hope.  I clung to it.  I prayed, bargained, developed every manner of superstitious habit.  There were experimental therapies, theories up the wazoo.  A drug that wasn't FDA-approved, shipped from a pharmacy in Canada.  A courageous doctor who wasn't afraid of being sued later for malpractice.  Plain, dumb luck.  All of this amounted to our boy ending up being in that fifteen percent.

I remember, during those dark months of titrating doses and watching my baby like a mother eagle, noticing a twelve year old girl sitting between her parents in the waiting room of the pediatric neurologist who saved our son's life.  The girl was clearly compromised.  Mentally-challenged in severe ways.  When we went into the doctor's office, he told us that the girl had been an Infantile Spasms baby.  Her pediatrician had missed the signs, just as ours had. The parents waited too long, and by the time she was diagnosed, there was no hope.

Today my son is twelve years old.  He's a tennis playing, computer-loving, rock musician with a beautiful voice.  He's a kind, gentle soul.  He is loved, perhaps to distraction, by his two parents who nearly lost him.  Nearly twelve years, and I no longer worry that the other shoe will drop.  That all of this—his recovery, our good fortune—has been a mirage.  But still, sometimes my husband and I look at each other over the top of his head and I know we're both thinking some version of oh, thank god, thank god, thank god.

But here too, is where it all grows impossibly tangled.  What does it even mean, to thank God?  I no more believe that God saved my son than I believe that God caused his illness in the first place.  I prayed when my baby was sick, but it was just one more thing to do.  I wanted to cover all my bases, in the event that someone up there was actually listening.  What I have come to believe is in the chaos and randomness of life, and the shape that we make out of that chaos and randomess.  We cannot control what we're given, but we can control our responses to what we've been given.  Our only agency is in what we do, how we think, how we react, who we become.  We make meaning out of everything life hands us.  Everything.

I don't read blogs.  I really don't.  But when a dear friend, a yoga teacher in Santa Monica, suggested that I take a look at Little Seal, I did—and I have not been able to  tear myself away ever since.  The writing is magnificent.  Without question, Emily Rapp possesses a staggering literary gift.  But her gifts—the more important ones, the ones that will see her through—have to do with this very quality of…what to call it…spirit?  Luminosity?  Courage, certainly, though my guess is that she would say that courage is bullshit.  That there is no other way.  But of course there are many other ways.  There is resistance, blindness, why-me-ness, rage turned into a fortress of solitude.  There is blame, recrimination, paralysis.  This year, in synagogue on Yom Kippur, I noticed for the first time on the list of sins for which we were all meant to atone, the sin of succumbing to despair.  That's what I don't see here in this saddest of stories.  I don't see people who are succumbing to despair, but rather, who are charging into gale force winds, naked, raw, vulnerable, alive.  They are loving their little boy and making every day he spends on this earth one in which hearts are reaching out and touching his.  People can spend their whole lives not feeling this.  Ronan's little toddler heart gets to feel this broken Hallelujah every day.

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Dani Shapiro is the bestselling author of the memoirs Devotion and Slow Motion, and five novels including Black & White and Family History. Follow Dani on her website and on Twitter.