9) Sometimes you're an ass.
I dont call you this, I call you my Ornery One or Mr. Negative, but really, asshole would work just fine.
This morning, you choked your sister over a found matchbox car at Cuzuncle David's; and when I said you owed Olive a major apology, you replied, "No I don't."
You stared at the ground and showed zero remorse over grabbing Olive around the neck with your man-hands because she rolled a small yellow car across the table-- a car you wanted.
My parents tell me when I turned eleven they hardly recognized me, their big-brother-hand-me-down-wearing, knees-scraped, Broadway singing, dress-up, feisty girl turned awkward pre-teen. Suddenly sullen and wearing eye shadow that matched my shirt. Slamming doors and crying at will.
If your sister wants to eat outside you say, "Let's eat inside."
"I don't want you to sit next to me," you tell Olive, all the time, even after you play store with her for an hour, laughing when she makes up silly words, loving the creative energy she brings to your logical world.
You stand in her way when she wants to walk in the front door and push against her when she beats you to the sink to wash hands.
You grab Olive by the hair when she tries to help you. You tell her, "No" when she asks you to play.
I remember my older brother at age eleven, calling me to his room to play, bombarding me with pillows when I eagerly joined.
He called me Crusty.
"What are you going to do Christy, cry?" is all Andrew had to say and my lower lip would protrude as my eyes welled.
I have to remind myself about the mayhem that emerges at eleven, so I don't always blame your disabilities for the monster that is sometimes you.
10. Self-conscious you are not.
You stand in the trailer with your pajama bottoms around your ankles unable to find a pull-up in your packing bag and accept help from your naked younger sister who easily locates one.
You remain free from the tendency to "compare and despair". You are not insecure or embarrassed by your differences and call all your classmates: My friends.
You bombard us with thousands of detail specific questions about everything from house numbers to airplane seats but never ask the more soul squeezing one: "Why me?"
You still enjoy shows like Daniel Tiger's Neighborhood and Sid the Science Kid. The only videogames you play are Wii golf and bowling. You know nothing of Hollywood characters, pop bands, or games like "Truth or Dare" and "I Never".
In some ways you are still so young, especially compared to your street-smart peers, kids who watch R-rated movies and play X-rated video games, kids who ask each other "out" and divide into warring cliques at school ready to take their conflicts out on the playground or Instagram or Facebook or whispers behind backs.
You stand alone-- thinking about chairlifts, elevators and trams, machines that magically move people higher...
...far above the pettiness of social cliques and divisions based on assumptions that shatter when lifted.
While others compete with each other for social status, you focus on the process of rising up.
11. Elias: You are the son I didn't expect. My teacher. My worry that keeps me up at night. My ache. My hero. My boy who break my heart apart and rebuilds it stronger.
My first born.
My daughter's big brother, Olive's tormentor and idol-- her larger form both to become and to define herself against.
You are the hands that mold me, the knife that slices me apart, and the language I will never master.
The mirage in the distance, the sun that hides behind impenatrable clouds.
The breath I no longer hold.
You are Elias, and I love you just so.
5) You run after me on the soccer field, surrounded by able-bodied boys, Samoan, Alaska Native, African American, Hispanic, Hmong, many with challenges greater than yours, hidden behind the closed doors of the trailer park Northeast of school.
You stand out almost as much for your blue eyes and blonde hair as you do for your canes that graze the field every few steps to keep you upright.
"Where's the ball?"
Your limited vision makes it hard to follow the game, especially in the May sunshine, but you run with the pack anyways, a smile wide as your namesake, Mt. Saint Elias.
When the ball hits your canes or lands by your feet, the boys who fearlessly slide-tackle, kick, grab, head, push, and collide, pause.
You plant your canes, swing your right foot, and connect with that nebulous orb, sending it a few feet down the pitch.
"Nice kick Elias," one of the 6th graders says, before he runs off to chase the turmoltuos mass of young boy bodies, in motion, once again.
You smile and follow along.
6) "What a sweet boy," the substitute T.A. says when I introduce myself to her as counselor and Elias's mom.
"He's so cute," I often hear.
Or: "I love him."
You know how to charm older women. At eleven you still want to hold hands. You tell people they are nice, that they are good teachers, or that you like them. You give hugs with all that you have, head against, arms around.
New this year, you also want to hug a few of your female classmates, especially the nice pretty ones. You sit too class to them in library. Tackle them in gym. Lean against them in class. They treat you like a younger cousin, awkward, but harmless.
Not a threat.
You recently stroked a girl's arm, and when she told you she didn't like it, you answered: "But I do."
I wonder, when will you learn this isn't OK? That you can't just throw your bony body into softer ones and claim, "I don't know why I did that."
7) Your mind is a map, holding street names, numbers, and facts. You miss social cues but can direct traffic around our neighborhood, giving precise directions to lost souls.
You love HGTV, shows with names like Flip or Flop, Love It or List It and House Hunters--your vocabulary includes terms such as: popcorn ceilings, granite countertops, list price, and kitchen island.
(This fall, you walked into a teacher and colleague's kitchen and said, "Don't you think that refridgerator is dated?")
When someone comes to our house for the first time, you point out not just the kitchen and your bedroom but our furnace and washing machines.
You could be a tour guide, an architect, a greeter, a map maker, you could design your own home or live with us till we pass.
8) When you fall, and boy, do you fall, if unhurt, you usually laugh and say things like:
"That hole just up and grabbed me."
"Well, that was unexpected."
"I just got rocked." (Or hosed, floored, walled, doored, treed...)
"I didn't do that, the chair did."
If hurt, you swing your hand to maim whoever responds, and don't answer when asked, "Are you OK?"
You amass bruises and scrapes that mark your body like resilience tattoos, that don't wash of in the bathtub, where you still let me, your Mama, wash your hair.
"Lie back," I say as I help you bend your legs and move your growing body down till your head reaches the side of the tub. I scoop water onto your hair, thick like your Dad's and the same dirty blonde as mine when I was a younger girl.
I cup the warm water with both hands, release it slowly onto your forehead, careful to direct the water away from your glacial eyes.
I wonder if this is how it will always be, you laying down, with me on my knees.
1) "That's my chair," you say, if someone sits at your particular spot at the end of our kitchen table, where you sit crisscross applesauce and look up at me most mornings as I emerge from the shower to say, "You look nice today, Mom."
2) From your thrown, you spell: firefly, funnier, happiest, on a large well-used whiteboard. When your sister sits beside you with a whiteboard of her own, you race to form large letters, on the edge of legibility, and swipe your paper towel across them as soon as you make the last mark.
"Elias! I can't see!" Olive whines, so you bury your head closer to your spelling words and write as if chased by the wind, by mosquitos, by a boat you can't miss, chased by the the approaching steps of your opponent, by loss, by the failings of muscles following messages from the mind, chased by Shakespeare and mythology and generations of siblings juggling jealousy and spite. You write: trying, eye, copy, hurried, deny, rely, contrast, empty.
3) You scream and slap my leg, claw at my face, a hyena mixed with bear, a fire alarm, a twister, neurons firing not quite right, a monster, mayhem, might-- a fight with my heart in the form of an eleven-year-old boy, my son, with hands almost bionic from years of walking with canes, you swipe at me, claws raised, and shout in a strangulated voice not yours, "I WANT TO HURT YOU!!!!"
4) "I don't know," you always say, when I ask you later why you acted that way.
"My mind just told me to throw things, " you told me after one of your more recent storms.
"Well what could you say to that part of your mind?" I asked as I smoothed the six blankets you like (in order) over your tired little bones.
"No," you say, like usual.
Or if I'm asking you to do something: "Ok."
As if rehearsing these words, when calm, will somehow prevent the six-bell alarm that sends your nervous system into full-freak out mode.
I place my hand on your head, like I once did in the NICU, where you spent those 94 days, not in the nest of my womb but poked and prodded and cut open and patched together again, where you almost died and your Dad and I became parents, learning to love each other with our hearts on the outside, so we can stand together, beside you, with no guarantees.
"I always love you," I say. "Even when I'm sad."
You rub your eyes that I long to fall inside but you hide from me, and say, "Love you too... Can you fill my water?"
I applied for an Individual Artist Award with the Rasmussen Foundation, hoping to earn $7,000 for a new laptop computer and childcare so I could write more often.
I want to turn blog posts into essays for submission to magazines while I work on the chapters of my first book.
My letter arrived Sunday and as soon as I read the word "unfortunately" I knew.
Hard to keep submitting when I receive letters like this.
As I read on, I learned that out of 331 applicants only 36 artists received awards and the ratio helped quiet the voice that tells me I'm no good.
The letter went on to say: Enclosed you will find panel comments...We hope you will be able to use these comments to improve your chances of success in future competitive opportunities.
It is rare to find out why the reviewers rejected my submission, I flipped to the next page and read:
Panelists Comments for Application:
Did not represent herself well on her application. Immature artist statement. Beautiful writing samples. Emerging.
So yes, I filled out the application the day before the due date finding myself with a workday at home with a sick kid, I pieced my artist statement together with two blog posts and called it good.
And I still have no idea how to write an artist statement.
How do I write about how and I why I write?
Still, I read on:
I just really like this artist's writing and sensibility. She is an emerging writer, and the field is too crowded and competitive to move her proposal forward THIS YEAR, but I hope she can get a real sense of my solidarity and admiration for her work. Her identity as a writer is not in question--in addition to all else she is, this is a writer. I looked at her blog and love the work she is generating, consistently, despite the pressures upon her. I so wish we could have funded her to get the additional writing time and equipment that she is requesting, but I trust that a writer of this caliber is on her way regardless. I thank the writer for the opportunity to come to know her work.
Maybe I'll keep writing after all.
"This is a writer."
Thank you, oh mystery panelist, writer, you.
Drinking tea instead of wine at night to smooth the tickle that disrupts the back of my throat, throwing me into coughing fits mid-conversation, my elbow over my mouth, back turned.
Been thinking a lot about sickness and health.
(Till death do us part.)
Why do we hide from the shared fact that we all die?
We deny this final page as if we can read backwards to the prologue, as if the covers of the book never close.
"Mom, why is the girl just lying down? And the boy leaving her?"
"It's part of the dance."
Olive and I sit in the back row of East High's auditorium to watch Reni perform with Dance Contempo. The diverse beauty of the girls and boys bodies as they move together across the stage holds us captive. Every dance a different style, from ballet to hip hop to modern to tango, polished to to an athletic art that speaks directly to the soul.
Beauty in action.
Olive never takes her eyes off the stage when she asks me questions about the performance.
"She's not in this one."
"Why'd those girls walk off stage?"
"They'll be back."
Half-way through the performance, during a love story duet, Olive says: "Mom, she has a pretend leg too," and its only then that I notice the girl's prosthetic.
Mom she has a pretend leg too.
We all have something wrong with us, an injury, a flaw, a secret we harbor as if it is our burden alone. We waste so much time pretending to be whole when all we really need is to be embraced broken.
We spent almost every Saturday this winter at the Challenge chalet, an adaptive ski school on the slopes of Alyeska and besides the obvious benefit of skiing as a family, the biggest bonus is being a part of a community of people forced to acknowledge the human condition of loss and flipping it on its head by living even more completely in the present.
Last week I learned I don't have cancer but that my body contains cells that could continue to mutate if left unchecked. I tripped on the word "pre-cancerous" in my report, falling over the letters and the fear they hold.
Not yet, I first thought, brewing worry with words, until I read it again and landed on not now.
"Mom," Elias laughs, "Where's the ball?"
"Did he just call you Mom?" the new kid from Mexico asks in the middle of our recess soccer game.
"Yeah, I'm his Mom."
"Wait, you're a Mom?" he squints his eyes up at me and cocks his head.
"Yeah, I'm Elias's Mom. And I have a daughter Olive who will be here for kindergarten next year."
The ball interrupts our conversation but later he runs near me again and says, "Why does your son need... ?" Not sure of the word, he mimics walking with canes.
"They help with his balance. You know how some people wear glasses to help their vision, well his canes are like that for his balance."
"But," He shrugs his shoulders, "He's fine. He doesn't need them."
I smile into the sun at this 11-year-old I knew I liked when I first met and say, "You're right, he can walk without them. He doesn't always use them."
"Yeah," the boy nods, "He's good." And as he runs down the field my heart follows in his wake, arms outstretched to embrace the truth of his words.
And that is just it: We are all good.
"This is fun Mom," Olive says as she scoops potting soil and places Gladiola bulbs in pots. "Fun, fun, fun."
"Yes, yes it is."
I hold a huge mass of Dahlia tubers that looks like a bunch of deformed potatoes and search for eyes so I can attempt to divide it. After years of growth I think its past time. I'm not sure if the tubers in my hands will produce orange flowers like the sun or white petalled flowers with fine purple stripes.
On this barren April day its hard to believe the tubers will grow at all as our world has yet to turn green. A cool wind blows but the sun is high in the sky and warms our faces as we work.
"Its fun and hard work," Olive says as she fills another pot to the brim.
I smile at Olive, so competent at five, no longer un-planting in my wake. I trust her to plant the bulbs as I showed her, with the round side on the bottom and pointy side facing up and decide to let go of concerns about how deep or shallow they go.
If they want to grow they'll find their way.
We all will.
There is something so innately hopeful in tubers and bulbs. The belief that beauty will emerge from the dark underground. From shriveled "deformed potatoes" flowers will grow.
"Mom, I love gardening with you."
"I love gardening with you too Olive."
I often rage against the uncertainty of life, wanting future answers in the here and now, instead of trusting in the process of time. I fill my pockets with worry, hoarding questions to feast upon on sleepless nights.
But the soil that seeps beneath my fingernails reminds me that life itself is anticipation, and to live is to stand in awe of all that you see.
Happy Earth Day.
"Did you pack a Magic Treehouse book?" Elias asks.
We are in Seward for the weekend, settling into Cuzuncle David's travel trailer for the night, high above Resurrection Bay, surrounded by Spruce and Hemlock, in a place where both magic and tree houses seem possible.
Elias has read all the Magic Treehouse books with his Dad and he and I are re-reading them in random order.
"What numbers did you bring?"
"I don't know. I didn't pay attention to the numbers. I grabbed one about the Olympics and one about Abraham Lincoln."
Elias pauses, then turns a thought into a question, as he often does: "Is the Olympic one number 16 and the one about Lincoln number 47?"
How does he remember that?
As I pull out the books and confirm his numeric memory, I am reminded, once again, how different Elias's brain works than mine.
Not less than, just different.
"I don't know what I'm doing," Elias says, as he pushes his body into the 5th grade girl sitting next to him on the couch.
She puts a pillow between her and my awkward son, who continues to throw his bony body into her long lean one. The pretty girl smiles, her shoulders hunched, and tells Elias to stop, in a different way than she would for a typical boy, one without canes or pull-ups in the 5th grade--nervous instead of righteous.
I don't know.
I don't know if my son will ever outgrow diapers, and this worries me more than wheelchairs, more than the words autism, cerebral palsy, and legally blind written in the many folders that contain the many labels for my son.
I don't know what all his diagnoses hold for our future, for tomorrow...
...for yesterday, for what we could have done differently in the past.
I never know if I'm doing enough-- if I missed a path somewhere that might have led somewhere else, where I'd know fewer acronyms, endure fewer stares, find fewer lines in my forehead after another restless night wondering what if...
What if he could...
What if I did...
What if we never...
What if we can...
I don't know whether Elias can't listen to his body or whether he chooses not to hear.
I don't know if he feels more than he expresses.
I don't know if he dreams at night.
I don't know.
I don't know how to hold the heartache of this complicated life I lead within the confines of a 24 hour day.
Sometimes the uncertainty seeps into my exhales, infusing every moment with worry and wonder about a world that isn't mine to control.
I don't fucking know.
I don't know.
It's a mantra of sorts that gets me through the many moonless nights.
I don't know.
I don't know if the oceans will rise, if my cells will divide, if a car will collide with mine as I wait for my light to turn green.
This I believe.
This I know.