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 it 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.