Emily Rapp's Blog, page 5

Calvin's Story

Please take a moment to read about Calvin! A perfect example of a "new" parenting narrative.

http://www.calvinsstory.com/

Yoga Blog!

Check out my guest blog on my good friend Jennifer Pastiloff's amazing blog.

http://manifestationyoga.com/2011/11/...

"Kindred Spirits" essay in The Bark magazine

I have an essay in the Nov./Dec. issues of The Bark magazine, where I write about Ronan, my beloved dog Bandit, and the amazing Kindred Spirits Animal Sanctuary, a hospice facility for animals with no place else to go.

We Belong

We Belong

Hope, they say, deserts us at no period of our existence.

-Robert Louis Stevenson

 

How do you know, without the words

to say it, that you are the summation of a lifetime

of desire? And when you know, do the stars emerge

from blackness, or arrive like shots in the sky?

-Danielle Cadena Deulen, "Interrogation"

Last Monday I found myself scurrying around New York City, dealing with the sweet, odd business of selling a book. The book – Dear Dr. Frankenstein: A Love Story – grew out of the essays and rants and raves and parenting manifestos and grief fugues written for this blog over a period of nine months. "Frankie"- as some of my early readers refer to the book – will be published by Penguin Press. You, readers, have helped me find the voice and shape of this work and I am deeply grateful. I will continue to post pictures and updates about Ronan's day-to-day life, and links to pieces appearing on The Nervous Breakdown and in other print and online magazines. I will chronicle the process of writing the book, as always with an eye on how living with and loving my son shapes and informs this work.

Walking down 6th Avenue and rattling away to someone on the phone on my way to a meeting in Manhattan, I said, "You know, none of us knows what will happen in the next five seconds or five minutes or five hours or five years!" feeling very authoritative and clever when I watched a taxi hit a man on a bike just a few blocks from Times Square, just as I was stepping into the street against the light. Everyone gasped and stood on the edge of the sidewalk. Even in the face of knowable and obvious disaster – my kid is dying and there's nothing I can do for him is a phrase that I hear in my head and feel in my body every moment of every day – there I was, crossing on a red light while doing four things at once (talking on the phone, chewing a bagel, reaching down to pull on the top of my boot, handing a corner street vendor $1 for a can of ginger ale). I just missed the missile of that bike by an inch, a beat. For a few moments everyone stood suspended, a stalled clump of people disbelieving but not surprised, and then, as if instructed, everyone began to run into the street to try and help the man stand up and recover his bike. He was on his feet, shaking his head, stunned. He appeared otherwise okay, although someone was offering to call an ambulance. The cabbie leapt from the car, calling "Are you all right?" The two men shook hands and talked. The crowd dispersed. I walked on unharmed – at least for the moment.

Later, wandering into the packed Macy's in midtown, I encountered young couples making out in the designer purse area and a few older ladies wearing hair nets sampling the latest Calvin Klein perfume while a diaphanous man wearing skin-tight white jeans moved through the cosmetics section offering free makeovers in a high-pitched croon. Outside on a stage in the street some F list actors were launching an unconvincing sales pitch for an alternative to the I-phone. A group of bedraggled protestors from Occupy Wall Street crossed the mall near 32nd street while tourists snapped photos (me included). At the end of my walk I bought a good-luck necklace for my friend Jen at one of the holiday booths in Bryant Park. You can "check in" on Facebook at the skating rink there, buy a bracelet made from an antique brooch, eat gourmet crepes and guzzle hot "drinking chocolate" while lounging in padded swings on "The Porch." At every point you are given the opportunity to tell everyone where you are — "I'm here!" – but where are we really? I saw more people every five minutes than I see in five months in Santa Fe. I was elated, ecstatic, sad, wild, focused, subdued, calm and confident – simultaneously embodying the best and worst versions of myself, which might be a kind of craziness or an extreme form of sanity.

Everyone feels like they belong in New York: it is the great seduction and deception of the city. I always feel excited for the first few days, like I'm the star of that silly Beyonce/Jay-Z song that lays down such a strong beat for a fast hill climb in a spin class. Everyone looks cozy but cool, sipping wine and eating creamy pasta through restaurant windows and close-talking over glamorous, colorful cocktails in hotel bars. After about 48 hours, I'm exhausted and overwhelmed. Instead of wondering about the life of the person sitting opposite me on the subway, I want to close my eyes and nod off as the R train click-clacks eastward to Queens.

Unaccountably, as I floated through these editorial meetings and then made my hours-long stomp through the city, feeling both electrified and slightly fraudulent (a typical writerly emotional combo), the lyrics of Pat Benatar's iconic, schmaltzy song "We Belong" wouldn't stop playing on a continuous loop in my head. (I also couldn't stop picturing the video: Pat's coral lipstick and baggy white suit jacket; her creepy green gloves that make it look like she's about to get busy washing dishes; her exquisite cheekbones and rockin' 80's hairdo, halfway between a shaggy bob and a pixie cut; the weird final scene when a group of terrified-looking children gather around a lake with a waterfall to sing the chorus while holding skinny white candles that could have been pilfered from a candlelight Christmas Eve service.) As I walked up 7th Avenue, loving the perfect autumnal day in a city as sharp and trembling and alive and gleaming as I felt at that moment, I remembered sitting in a green Pinto that smelled like cigarettes and Fritos, listening to Pat's song and "cruising" down a small-town Nebraska main street wearing too much makeup (no doubt modeled after Pat's eye makeup), and pretending that I was cool and cute and "right" enough to attract some muscle-y, fast-drinking, sullen suitor who might be glimpsed in a car passing slowly next to ours. Cars full of teenagers stuffed with hormones and cheap beer, offering one another hesitant, pleading looks full of lust and longing through dirt-smudged windows.

On these nights my girlfriends and I inevitably ended up at a party in some moldy, windowless basement; these wine cooler-fueled booze-ups were often hosted by the older kids of the Fellowship for Christian Athletes, who were always threatening to make us (the girls, at least) wear purity bracelets before stalking off to someone's parked car to steam up the windows. The younger, awkward, more tentative girls just sat around looking at one another, strategizing about prom dates and wondering what our lives were about, or for. My thoughts at that time ranged from I don't want to do anything that will disappoint my parents to Cute boy! Hide! to This wine cooler tastes like drinking a Pixie Stick to I'd rather be reading a book. And on those nights I vividly remembering thinking about the Vietnam vets I knew from the prosthetist's office – my secret life that nobody knew about and that nobody could touch and that I only realized I cherished in these weird, out-of-time moments of adolescent angst and wonder, the music too loud, the bodies too close and real and unfamiliar. I much preferred my dream life to the life I was currently living, and I remember wishing one of those sinewy, over-tanned, wrinkly, cursing, inappropriate, limping dudes – one of my Vet friends — would stroll through the basement door, light up a Marlboro Red, say "Hey, Kiddo," and save me from boys my own age, who I understood would never love me, which at the time I desperately wanted, and would certainly never choose me for "that one thing they all want," which is what we'd been invited to this alcohol-soaked gathering to be reminded that we should explicitly avoid if we were to remain good and pure in the eyes of our Lord. (Who was also, apparently, a staunch supporter of intra-mural sports.)

As a kid, and then later, as an adolescent, I loved the Vietnam vets because they weren't like any other men I knew through the wholesome avenues of church and school. By contrast, these guys smoked (how stinky and rebellious and cool!), had tattoos (awesome!), wore buckets of the most hideous cologne/aftershave, and told dirty jokes that I didn't realize were dirty, but I loved the feeling of being let in on a secret, being complicit in some kind of wink-wink naughtiness. And because they laughed at their own jokes and you could only feel safe looking at them when they laughed I was always asking for a joke. I wish I remembered some of those set-ups and punch lines; they'd probably be clean by today's standards. (This was pre-internet porn and during the time when Frogger was one of the most violent video games available.)

I only looked in the vet's eyes when they laughed because when you looked straight on there was some hole there, some deep and unspeakable knowledge of sadness that children and people who are falling in love can best intuit, as both states approximate a mild state of psychosis. The senses are heightened, almost unreachable, and what you feel most strongly is a truth waiting on the other side of your hand that you can almost grasp, but the more urgent your reach the more quickly that truth recedes, as if giving you tough-love proof of its ineffability. The emotions that drive us most are usually the ones we understand the least. Why is it then that the most ineffable connections can feel (and perhaps they are) the most deeply true? Explanations fail. These veterans knew that I knew loss and they knew that I didn't yet know that I knew it, but that when I did it would hurt like hell. And they were right. At least I like to think this is why they were kind to me, although it could also be because I was precocious and chatty and pushy about getting people to sing Disney movie duets while we waited for the "doctor" in the back room to saw a foot or fix a knee hinge for one of us. Maybe I gave them no option but to participate in my innocent antics, this forced friendship.

While I was in New York, Veteran's Day was just around the corner. Waiting in La Guardia for my flight, a crowd began to gather a few gates down. A plane full of soldiers from Iraq had arrived home. I watched from a distance, knowing I couldn't bear to watch the reunions, understanding that witnessing a true expression of happiness might make me sob in front of that group, and if I started that business it was quite possible that it couldn't be stopped.

"They fought for our country," I heard a pregnant mother tell her toddler, a boy probably about Ronan's age, although it's hard for me to tell anymore, locked as I am in the world of my baby stalled out at six months. The boy was walking and talking and prancing around the lobby with a SpongeBob Square Pants doll. Part of me wanted to steal him, and I was ashamed of the impulse. I watched men and women in fatigues move away from the gate, their arms looped around the shoulders and waists of loved ones. Strangers offered hoots and high-fives, forming a gauntlet of applause and thanks and accolades.

I was drawn to my generation of "wounded warriors" (although the new veterans are closer to my age and many are women), because their bodies didn't belong. Their stories didn't belong. Nobody was waiting for them when they returned. Nobody cared. They embodied – literally – what I feared from a very young age but couldn't articulate: that a person might be broken and different enough to be outcast forever. Over the years I began to visualize this exile as epic and permanent. This scared the crap out of me, and on some days it still does, because even though everyone celebrated those soldiers returning from Iraq in La Guardia, in another part of the city the 99% were strolling past the red candy-wrapped holiday windows of Macy's, shivering in too-thin jackets and being sneered at by police officers.

Those soldiers were (and are) grieving losses I will never know, stories I will never hear. "What was it like?" I want to ask them now. "Tell me what it was like." We all want the answers to these questions but we're afraid to ask. "I'll show you my grief if you show me yours!" is not an appropriate offer for a returning soldier. I sulked at my gate and blinked back tears.

But years from now, when someone asks me what this experience with Ronan has been like, I might say this:

Living grief is like traveling on a train at night with people you don't know, people who are actually versions of yourself that you don't yet recognize. It is winter, and cold, and the only sensation of warmth is the soothing, staccato rumble of the train beneath you. "We Belong" (of course!) is playing from tinny speakers, the sound partially muffled. You're so thirsty you could drink gallons of water and still need more, but the smallest cup of rusted, tepid water would also satisfy. Briefly, the lights go out, and the strangers you were traveling with disappear, and you are left to stare at the moon-touched snow patches that trace the iron tracks, and you don't realize you've been counting them until they stop just in front of the backyard of a house with lit windows. There's a family inside. And you're hungry and tired and lonely. You press your nose against the window and feel the cold leak through you. Luckily, the window near your seat unhinges as easily as an old and rotting door. Your body slips through and you jump. You leap without caring about the cost, you leap knowing that to risk is to break something, to lose something, but you can feel the warmth in the room (the train is cold now, water is filling the aisles in your absence), and you are wild and reckless, a rocket of impulse, and you know that the leaping – the act of it – is more important than the result, or even the motivating desire.

But when you reach the window with the happy family smiling inside, it won't open. The door is locked, bolted, impenetrable. Nobody can see you. You are not who you thought you were. You are Frankenstein's monster, dragging your knuckles in the dirt and grunting, unseen and unacknowledged. You realize that this is not your world, not yet, it doesn't belong to you, and so you turn around and sulk back to the train, which has now stopped to await your return: you, the single passenger. You've got more work to do, more shadows of yourself to encounter, more stops to make on this journey in a world where so many of the edges you once took for granted have been sawed off, fallen away, disappeared. You're broken but strangely sated, a bit bruised maybe, but lighter as well; you've taken something from your blast through the window of your fear, and you re-board and take your seat. You travel onward, the train rocking side to side, and you are calm without being soothed, and you don't forget that house, the lit rooms, the missing of the feeling of being inside something precious, something lasting, something yours, something that promises hope without guaranteeing any predetermined future. No magical life or person or success or moment is going to pluck you out of your current circumstances. You've learned that lesson in your leap. But that doesn't mean you don't have choices. It doesn't mean you don't get to pick, or that there's nothing to do.

We lose everyone eventually, but we can learn to know and accept ourselves. This process doesn't advocate the adoption of some false moral center or socially dictated set of rules. It is not, as my creepy high school guidance counselor once told me, an issue of developing "one's inner compass," which was not a good metaphor since my sense of direction was (and remains) limited to "go left" or "go right." It's more about honing the ability to take a leap – or leaps – of faith. I want to thank you, readers, for allowing the space for me to jump from that train every day, and then to hop back on, weary but weirdly renewed.

Whatever we deny or embrace, for worse or for better, we belong, we belong, we belong together.

Our journey as human beings is all about the desire to belong – to each other, of course, as friends, partners, lovers, colleagues, parents, spouses, children, siblings, whatever, and for varying lengths of time: minutes, years, hours, just moments, our entire lives – but it's also about belonging to a community, to a place, to a people, to this extraordinarily beautiful and terrible world. I've spent the bulk of my life in sheer terror of being kept on the outside, of not looking/being/acting/loving/sounding/being right, but I wasn't always like this. Years ago, in a prosthetist's decrepit office in downtown Denver I was a skinny, freckled girl jumping into the arms of grieving, haunted men I didn't know but innately trusted, insisting to be flown around like a plane and addressed as Ms. Mighty Mouse. I love that girl, and parenting Ronan has helped me find her again, and trust what she has to say. My son is completely helpless, completely dependent on the care and love of others. He always has to leap without looking: this is the story of his life, and he is not afraid. He exercises absolute trust every moment of his life. What's my excuse?

The truth is, I don't have one anymore. I officially sold Ronan's book on Halloween, and that night I stepped out of my house and smelled the smoke-tinged air, noticed the mountains cutting shadows over the arroyo, watched the jack o' lanterns flashing their candlelit smiles across the street, the moon a bright thumbprint in the sky, the dried leaves falling from the biggest tree on the block. Ronan's place, his home. The place where he lives and, years from now, will have lived and died. No looking forward, no looking back. Just work. (Thanks, Pat!) I took a deep breath and felt locked, for a moment, in this certainty: Ronan has made me fearless. And for this ferocity I thank him.

And I thank you, readers, for traveling with me as I make these leaps of faith and then rattle along down or up or over or behind to the next stop. Thank you for showing up and standing along the tracks, cheering just for the sake of cheering, championing the way. You: brilliant planet of people who have made this journey bearable and possible. Thank you. Whenever the train stops, wherever it stops, there will be something to choose, a way to belong, and because of the work this experience has forced me to do, I will not be afraid.

Years from now, when I open Ronan's book I will find him, still alive, in those pages. Thank you, readers, for making a space for these words – and for Ronan's story – to belong.

Talk of the Nation

Dear Readers,

Tomorrow I'll be on NPR's Talk of the Nation program discussing the lessons that can be learned from parenting a terminally ill child. The program will air at 2 pm EST on your local NPR station, and I'll also post a podcast when I can! Thanks!

The Nervous Breakdown

Click here to read a new essay on The Nervous Breakdown website today: evil, Tay-Sachs, my dad in red tights. Read on…

Pictures.

Hey everyone – check me out out over in a new photo album on Facebook.

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Thank you.

Thank you to everyone who has responded to the New York Times piece.  The tweets, shares, comments on the blog and on Facebook, the telling of your own stories – thank you.  I am doing my best to send your love and warm wishes Ronan's way.

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Family Notes: The "New" Normal

Family Notes: The "New" Normal

I also clung to the idea that if things remained exactly the way they were, if we were careful not to take a step in any direction from the place where we were now, we would somehow get back to the way it was before she died. I knew that this was not a rational belief, but the alternative – that when people die they are really gone and I would never see her again – was more than I could manage then or for a long time afterward. -William Maxwell, So Long, See You Tomorrow

At 2:00 this Wednesday, as she does each week at the same time, Ronan's physical therapist came to our house. These were her observations of the hour: Roan seemed to enjoy our session. We played in the beanbag and turned on the vibrating seat. I played with different things to prop his hands where they would stay on toys or stay together so he gets feedback about where his body is in space (hand to knee, hand to mouth, hands to feet). I also worked on some tension on the left side of his neck.

Using her nickname for him – Roan – she wrote on a yellow slip of paper under the typed heading "Family Notes." The font is playful and festive, and reminds me of an advertisement for the preschool near my house: Small World Nursery School, Enrolling Now! We keep these single sheets of notes in a folder, although sometimes I wonder why. Wouldn't it be better to just pretend that time could stop as Maxwell's narrator longs for it to do in So Long, See You Tomorrow? Couldn't we just freeze this frame and not go forward (which for us means backward), and just leave the foot hovering in the air, let the ground spin away, just suspend deliciously forever? "Stop time in its tracks!" bellows one spam email in my inbox (an advertisement for wrinkle cream.) "Expect musical skills soon!" promises another from the child development website that I've unsubscribed to almost 100 times but without results. Couldn't this Wednesday be our last page of family notes? Couldn't we stop here, stop adding to the stack? Couldn't it be that easy? Someday, of course, the narratives will stop because Ronan's life will stop. I know this, I expect this, and I know that when that happens I will wish for the reverse; I will wish for more family notes, a thicker folder, more time. I will want the house covered in yellow sheets of paper, little scenes from Ronan's life, just another day, just one more skinny piece of paper to shimmy into the short stack. I'll be a hoarder of narrative.

Expectations feels as meaningless as words these days; all the little narratives that pepper our world but without adding the flavor of meaning, without adding anything at all. Walking through the grocery store I read "Meet our beans!" on the back of a soy milk carton; a chocolate wrapper practically promises that the bar inside the gold-flecked wrapper is health food; one cereal box claims to contain cereal grains "on a mission;" wine bottles, even the cheap ones with clip-art labels, have tiny stories about how the grapes were harvested. At the coffee bar is the eco-friendly directive to "re-use your coffee mugs." Words: so often undeserving of the emotional weight they want to carry. At the check out counter, among magazine headlines that promise to "build a better butt," and "avoid holiday weight gain with just three tricks" and the latest celebrity baby photo or pregnancy announcement or fashion flub, is a magazine advertising, simply, "health," that looks the least odious and that I attempt to page through while waiting to check out. A life coach offers the following advice to a woman who writes in to the monthly column, worried about being "fired up" all the time, constantly in fight or flight mode. Stating the very obvious that "being in stress mode impairs your judgment during everyday situations, because it narrows your perspective," this coach of life recommends that this frazzled letter writer schedule in daily fun and exercise, claiming that the implementation of such tactics will create a "new normal" that will feel so totally amazing. I numbly replace the magazine in the rack and remember that our new normal is so out of most people's vision or understanding that there is no magazine article to help make sense of our dangerously narrow perspective, like a snaky hiking trail etched into a Swiss mountain and without a guardrail. There is no parenting advice, no call-in radio show that might help us navigate these weekly family notes and what they mean, which is that our child is dying and there's nothing nothing nothing to do about it. There are no real strategies here, because the part of the body that must adjust to the new normal is the heart, which is a muscle, and therefore stubborn and strong and braced both to avoid and absorb loss. The heart, the heart – what to do with it?

That same morning, during my office hours at the university where I teach, I opened my Emily Dickinson book – the old school hardcover version with the glossy white cover and the silly pink flower bouquet that I remember cracking open on finally-cool summer nights after my grueling double shift at the mall, the first at Victoria's Secret, where I chirped and flirted merrily away selling bras and matching panties, and the second at Eddie Bauer, where I changed out of my skirt and hose into a flannel shirt and ripped jeans to stock the shelves, when I would recite some of Dickinson's poems to keep from going completely out of my mind – and found a to-do list written on a notecard in handwriting that was not mine but that was easily recognized as female, with curling, looping letters and one heart-dotted "i."

Cheetos

Bagels

Butter

Milk

Mac n cheese

Hot pockets

Something frozen and sweet

Lettuce (checked)

Dressing

Carrots (checked)

Bacon bits

Cheese

Lunch meat (checked)

Bread

And there I was, for just a moment, in somebody else's life, inside somebody else's normal errand, wandering through the cool aisles of the Whole Foods in Santa Fe, New Mexico with my shopping list, not wondering, for just a moment, how many more moments I have with my son, but wondering instead what sweet and frozen treat I might buy (Coconut milk ice cream? Sara Lee cream puffs?), and wondering about the maker of this list. Was she a mother, a graduate student, a grandma living on social security? Someone I worked with at Eddie Bauer who might have picked up my book in the break room more than 15 years ago and slipped the list of things she planned to pick up after her shift between one poem about death and another about the brain? Was this list maker planning to make a salad? Have a super cheap-o dinner party? Was it drunk food? I fell in love with the maker of this list because for just a moment my feet lifted from the ground, away from the hole I feel like I fall into each morning when I remember that someday very soon I will wake up and my son will be dead. Grief: a daily opportunity to wake up walking on air.

Wait! You're also on stage. People are watching, looking, wondering, and I notice these onlookers the way you sense an audience during a performance — a dark, tense and whispering blob of expectations – without seeing them. Being on stage for dopey high school musicals or swing choir or opera vocal juries or now, mothering Ronan, are some of the times in my life when I've felt watched ("How will she dance with the leg?" "Wow, she can sing!" and "That poor mother, how does she do it?") and also fearless. I can dance and I can sing and I can mother this beautiful child. Watch me. Watch me love him and live. Grief is a performance that the griever watches, too, nervous and sweaty, from the nosebleed seats. The encore is not the goal; the accolades are not of interest. I'm only trying to complete my lines without shattering like a big messy wet star all over the heads of the unsuspecting audience members. And I cling to time as much as I fear it, I welcome it as deeply as I long to stand solidly in its way. A version of fight or flight, I guess. A version of the new, spectacularly fucked up normal of parenting a terminally ill baby.

As I drove home the angle of the setting sun was just right, the Sangre de Cristo mountains were almost too perfectly outlined by the shadows of dusk, the dips and rises so clear it was as if you could reach out your hand and move them around. Pick off a few hikers. Pull out a few trees. A paint-by-number painting, a joke, a framed photograph with an "inspirational" saying written above, a mountain worthy of any Sound of Music nun to warble about. My normal day: a class, a trip to the store, a quick drive home. I wondered what would happen if those mountains fell, tumbled in a blaze of dust and dirt like the apocalyptic scene of a bad action film. I could actually imagine it, because nothing about this new normal surprises me anymore: not the joy of my son's sweet face, not the terror of losing him. The mountains looked that close, that malleable, that easily rearranged, spit upon, an uncaring audience, a reminder of the brutality of nature and biology, the tyranny of fact. I opened the window and let one hand hang out in the air as the light shifted, faded, and disappeared as it does every day, without fail, relentless and necessary.

The word normal is gone; there are only notes on this day and then the next in one baby's short life. There's only the place we are now and then that's gone, too, the show ending as quickly as light draining off the mountains, erasing shape and shadow, the audience gone, nothing more to see or judge, just that lone performer walking carefully through the aisles from the top row to the orchestra pit, inhaling the stuffy, mint-and-sour-breath air, fingering the backs of the oily, still-warm seats, sighs and claps still thunderous and real-time in her head, sweating and grateful and shimmering and strong, moving her fired-up limbs while her aching throat is quiet and no fight or flight but the heart beating two words in a tick-tock rhythm — watch me watch me watch me.

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Guest Blog by Jennifer Pastiloff

Today a post by my dear friend, Jennifer Pastiloff, who has spent the last three days lounging with Ronan. Read on…

Which Brings Me To You by Jen Pastiloff, originally published on the Manifestation Yoga Blog.

That which brings me to you. Here I am in Santa Fe, sitting on a love seat, and next to me, a sweet baby is propped up on pillows, as I write, drool sliding down his chin, eyelids heavy and soft, purring like a cat every so often. A sweet dying baby.

Which brings me to you. It caught my eye, that book on the shelf in the office converted into bedroom, equipped with an air mattress for me on the floor.

Tay Sachs is that which brings me to you.  A dying baby is that which brings me to you, Santa Fe.

Ronan with his mom's book Poster Child across his chest

It is cold here. Colder than I expected. There is an energetic shift within my bones that I recall from many autumns in New Jersey and New York. As if the person within the person of me comes out and takes over during this time. The person wears my clothes and looks like me, but she thinks and feels a little differently. She is a little more somber and introspective, melancholy even. The light patterns change, the air demands attention and the sky often meets you at the front door as you open it for a moment of season. They get season here, whereas L.A. lacks that. I appreciate the season as it demarcates the eras of my life. Without them, my life becomes one long weekend. Such is life in L.A.

The season here, however, is the same it has been since Ronan's diagnosis.  I can tell the weather in their little adobe house has been winter dark for the last 9 months. December dark. Losing light at 4:30 pm and dead trees kind of dark.

Ronan is peaceful. He doesn't know what is happening to him. It is hard for me to conceptualize that soon, could be months, could be a year or more, he won't be anymore.

Right now he sits next to me in a plaid shirt, sitting in what looks like a lotus position, and just is.

I sound like such a yoga teacher when I say that. He just is. He doesn't fuss except when he is very tired or his head flops over to one side, which it does quite often. His presence is comforting, knowing he is sitting there next to me, like a fat baby Buddha making little hiccuppy noises every few minutes.He's here now. In time, a short time, he won't be. The mathematics of this equation refuses to register in my head. He's here now and everything feels good on this brown couch. The rise and fall of his chest is a reminder of what is constant in the world, of kisses and baby things and deep full breaths of mountain air after you've been trapped in a dirty city way too long. He is so peaceful it is hard to imagine that with his death will come such an uprising, such pain, such a loss, that the word peace will have long left the English vocabulary.

The word 'peace' will be come extinct along with 'fairness'.

It is colder than I imagined here. We went out to breakfast today with Ronan to Mavens. Emily, with her one leg, was one of the most dedicated yogis ( and spin class addicts) I had ever met, and right away I knew I would not only be inspired by her but would be her friend. It was fast like that. Love at first sight, if you will. Plus, she is an incredible writer and I am in awe of her mind.

At Mavens, I had a traditional Mexican breakfast of sorts and while Emily went to the restroom I snapped 15 pictures of Ronan with my iPhone. I pretend that if I take a lot of pictures and write about him enough that he won't ever stop existing. A friend of mine emailed me yesterday and told me to "steal away a little of their pain."

I wish I could.

Ronan gets startled easily. I crack my knuckles, a nasty non-yogic habit, if you ask me, a dirty disgusting habit which I have done since my dad died when I was 8 in an effort to be like him. I crack my knuckles and he startles. He may be dying but his intuition is still spot on. He cries when he is tired or hungry or annoyed or I crack my knuckles. I should stop doing it in honor of him.

His face is stunningly beautiful. So much so, that yesterday at a coffee shop in Santa Fe with Emily, I told her that maybe he was an angel. Corny. I know. The face of an angel is what stares back at you when you look at this baby. No judgement, no fear, no lines of pain and a life lived, just beauty and quiet and contentment.

We went into town while he was napping and looked at the chile shops and turquoise. I bought chile fudge and a watermelon juice and some dragon leggings. They have literal dragons breathing fire on them. It felt apropos.

Nothing makes sense so why shouldn't I buy dragon tights and a watermelon juice on a freezing day?

I used to think perfect didn't exist. Not the word, not even the idea of something so without faults that there was no room for growth or improvement. It does exist! He is sitting next to me. Whining just a little, so I know he is here. He won't improve or grow. This moment is who he will be forever in my mind. He is perfect.

I felt embarrassed after my meltdown at the airport when they wouldn't let me on my flight and I threw a fit. I went into a rage. Now as I sit here on this cold Santa Fe day, as Emily is teaching her university freshman writing class, and Rick, her husband is asleep, I realize that I was right to fly into a rage. I get to have this moment on this couch, in this room, all by myself with a perfect purring baby. I was robbed many moments when I was rerouted to Dallas. I want those moments back.

Emily and Rick's whole life is going to be filled with wanting those moments back. With wishing to never have gotten rerouted. I know I threw into that rage for them. I was indeed trying to take just a little of their pain away.

I sit here with Ronan as he snores lightly. It is a calming sound, one I could listen to forever, knowing Ronan was right here.

Rick comes and takes him to feed him his lunch. Ronan smiles slightly, but it's there. A smile. He is still here. He can purr and cry and smile every so often. The science fiction like reality of what is happening to him is still far enough way, locked outside in the October New Mexico sky, pummeled to smithereens by his ability to still smile at his daddy.

That which brings me to you is death, yes.

But that which brings me to you is also your life, sweet Ronan. It is your presence in the world, which right now, at this moment, is as spectacular as a million meteor showers as you lie on your back outside and watch the night explode into light.

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I urge you to follow Emily Rapp's blog " Little Seal" and fall madly in love with her, her writing, and of course, Ronan. I visualize it becoming a great book which helps other people who are going through such devastating loss.