Following Elias

What I do and don't know today

This is what I know: the proposed elementary school budget for next year includes cutting six counselors.

The last six hired.

Seniority decides who stays and who goes.

What I don't know: where I am on that list.

Originally hired in the summer of 2008, I had to quit in January of 2009 after using all my maternity leave during my high-risk pregnancy.

Call me crazy, but I was unwilling to return to work when Olive was only two weeks old.

Luckily, my principal delayed filling my position so he could re-hire me in August of that year. But now the lady from HR tells me 09 is my start year.

That obviously puts me further down the list.

I don't know when I'll find out if I'm one of the many educators given a pink slip during a political year. And I don't know what my family would do without my income.

I do know cutting counselors isn't a long term solution to improving schools. I know my job matters to the children I serve.

I know I'll miss walking to and from school every day if I'm fired.

And I don't know how I'd explain to my kids why I wasn't there...

Good Morning

Friday. 5:30 am. I hear Elias's footsteps as he walks from his room, through the romp room, kitchen, living room, to our bedroom on the opposite side of the house. I don't marvel at the miracle of my boy walking, on his own, in the dark, across our scattered floors. I glance at the clock and think, "Too early."

But I let Elias climb in next to me and curl his body against mine. I don't carry him back to his bed as Nick and I discussed. I miss my baby. I'm taking a class on Native boys that kept me out till after 8:00  and so I only saw him for about an hour on Thursday. He nestles his head against my chest and kicks his legs till they lie between mine. My arm wraps around his back. We fall asleep entwined, like hands clasped together in prayer.

When the alarm wakes me at 6:30, I feel hot and full. I climb over Nick and walk to the kitchen. Turn on the computer. Check gmail, the Anchorage Daily News, my school email, Facebook, all the while holding my pee because I don't want to wake Olive and ruin this moment of time with my own mind.

Just me.

And the entire world at my fingertips. Or pieces of it. Images and words.

"Mama..Mama!" I hear when I can't hold it anymore. And I want to walk back to the kitchen, make coffee, but I can't ignore my baby's pitch. I open her door to find Olive standing,  one leg on top of the railing. She reaches and falls into my embrace.

"Sit, Mama, sit," she points towards the doorway, the living-room couch in mind. "Side, Mama, side." I hold her in my lap and she opens my robe. "Side, Mama."

I know we will stop nursing soon and so I savor the way she searches for milk, for suckling, for a connection only we hold. I know this will end and I want to remember the moment. I want to preserve the memory of sustenance, of the power of making milk for my daughter.

"Snack," Olive pulls her head from me and smiles.

"You want some food?"

"Yeah, foo," she climbs from my lap and gallops to the kitchen.

My daughters talking. Olive, my baby of two years. Growing beyond my control and engaged with the world around her in a way that makes and breaks my world daily. The way she moves--mentally, physically, socially--models natural development and highlights the challenges her brother faces.

Hourly.

And this tension between poles exhausts me. And expands my soul.  And oh, does Olive love Elias.

In the kitchen Olive opens the cabinet and points. "Tee, mama, tee."

"Seaweed?"

"Yes!" She jumps and claps her hands. I hand her a pack of Teriyoki Nori and she attempts to open it with her teeth.  I turn towards the coffee maker. "Elp? Mama, elp!"

"I'll help you open it."  I take the pack from her and wrip the thin plastic with my teeth. "Here you go."

"Tankee Mama."

Coffee. I need coffee.

"Mama up!" Olive pulls on my P.J's. "Up Mama!" And I want to hold her but I don't. I want to make coffee.  I want another moment to myself.  I search for Elias's ipad to distract her. Nick arrives in the kitchen and helps me find it.

I put my arms around my husband and look him in the eyes, "Good Morning." And he kisses me like he does every morning. And afternoon. And evening. And night.

"Good Morning."

Indeed.

At 7:30, I walk to our room to wake Elias, with Olive as my shadow. "Up Mama!"

When I turn on the lights, Elias sits up.

"Yia!" Olive laughs, surprised when he emerges from under our covers. "Yia!! Yia!!" she catches my eyes and dances to the sound of his name.

Elias smiles at his sister.

"Good Morning Bud!" I touch his head.

"Good Morning," Elias answers. Without prompting. Without me having to greet him again or ask him: What do you say when someone says hi to you?

"Good morning," Elias answers. Such beautiful words.

"Mom, Mom, Mama," Elias leans on our bed, rubbing his eyes.

"Yeah?"

"I'm thinking," Elias walks towards me and reaches his hands for my hips to steady himself, using my innate command of gravity as his own. "I'm thinking about bringing my kids to the hospital to show them around. Show them the D elevator and how it talks to you." Elias doesn't look at me as he speaks but he holds me in the center with his hands. " Show them how the B and C and A elevators go ding."

 "Like a field trip to the hospital?" I ask.

"Yeah, and show them how the D elevator talks. I'm gonna ask my teacher if I can bring my friends to the hospital and show them around."

I love hearing him say my friends. "That's a great idea, Elias." "But I just want you to know there's a lot of planning that goes into a fieldtrip. Mrs Jasper will have to ask Mr. Webb. And you'll need permission slips."

"And a bus," Nick adds.

"Ooh, a bus!" I smile.

"And then I can give them a tour around. Can show them how the D elevator talks and tells you what floor you're on."

"You won't all fit in the elevator, you know."

Elias nuzzles his face against my stomach as he thinks about this. He pulls away and turns his head to the side. "Maybe I can take my table group one day and another table group the next day and..."

"Or," Nick interupts. "You can make a movie of you riding the elevators and show it to your class." 

Brilliant.

And so began our Friday.

A happy one to you and thank you, as always, for reading.

 

With Alexander in Mind

Its minus fifteen and you lost your hockey game and the graters blocked the driveway to the Brown Jug with a three foot pile of snow so you have to pull an illegal u-turn with your cans of Pabst (b/c you are cutting expenses and Anchorage stopped recycling glass) and when you finally make it home, as you struggle to plug in your Subaru, with your felted wool mittens, you think, what a perfect ending to a Terrible Horrible No Good Very Bad Day.

Your Mom says some days are like that, even in Australia, where the days are long and you don't have to wear three to four layers of clothes just to walk out the door.

Most Alaskans, even those of us who moved here for the snow, fall down at least once mid-winter and find ourselves raging against the thermometer as we long for the ease of sandals in grass. We dream in every shade of green as we trudge through white and grey. We question our sanity as days pass with air so cold it never reaches above zero. The sun taunts us with its brilliance but doesn't warm us with its presence. We hunger for the heat of clouds.

You don't really want to move to Australia, but you do want respite from the icicles that surround your heart. From the fear that no matter what you do for your son it will never be enough. Or it will be too much. That you can't enter into his world and he can't join yours so you will always be communicating from different poles. You expect him to understand North when he needs you to step into South.

And as much as you love him, you are not of him; and a thousand appointments with specialists can leave you knowing nothing. You force him to be still, to wait, as the the Dr. looks at his chart, but even you have forgotten what he is looking for. You want to do nothing and you want to do everything. You want to say yes to every suggestion from every therapist but if you were to implement every request you would run out of breath.

And you just want to breathe.

And so you write because you know you are not alone. You know that all over the world there are people having Terrible Horrible No Good Very Bad Days. Far worse than yours and better.

Even in Australia.

Feelin' fried: Gonna watch Parenthood and lose myself in another family's drama, for an hour.

Thank god for a long weekend, and a birthday, because besides that oasis of goodness it's been a rough ten days. Multiple crises at work and on Friday the news that us elementary school counselors may be affected by the upcoming budget cuts. The big ol' economy affecting little ol' me. If it ain't personal its political and it might as well all just erupt at once. With Elias, we are back in the land of bi-weekly appointments and we have so many more to make. I can't divine enough time to fill out paperwork or dial the phone or research or..

Birthday Ski

And between a holiday Monday (Thank you Dr. King) and a Sunday night without my children (Thank you Bruce and Kathy), I'm feeling pretty spoiled-- especially since Olive woke up puky this morning, and while Grandma and Pop cleaned her up, I slept peacefully in my own child-less bed after an evening out with Nick.

Now back to being Mommy...

More Questions than Answers

Watching football with Nick and Elias while Olive naps.

"What are you typing?" Elias asks as he leans against my left side. Our laptop balances on my thighs; Elias pins my left arm against me.

"I'm just trying to write."

"Write what?"

"I don't know. Just write."

We took Elias for x-rays of his hips this week and they came back normal. I'm not sure weather to be relieved or disappointed. He still looks so uncomfortable when he walks. His body even more out of whack than his normal posture-poor steps.

No answers.

I am less concerned about his brain because everything else about Elias seems like the Elias we know and love. Non-stop questions, for one.

"Can I do something on the computer after you? Can I do something on the computer after you? Can I do something on the computer after you?"

"I'm working right now."

"What are you working on?"

"Um..."

We're thinking he might have tweaked something in his back as opposed to his ankle or foot and, man, do I wish he could localize the source of his discomfort. Never once has he complained of pain.

"Mom, Mom, Mama..."

"Mmmm?"

"Do you like peanut-butter toast?"

"Yep."

"I like peanut-butter toast."

"I know."

"Mom, Mom, Is the museum open today?"

"I don't think so," I lie, not wanting to leave the house and venture out into the -16 degree day.

"Oh, yes it is, its Saturday."

"Oh, yeah, you're right." I watch New Orleans score their second touchdown of the game, slowly catching up to San Fransisco. "Yes!!!"

"Did your team score a touchdown?"

"Yes." I'm a Giants fan first and foremost, and New England second, but ever since Katrina I root for New Orleans too.

"Do you want to go to the museum?"

"No. We're watching football."

"Are you still rooting for the white team?

"Yes."

"Daddy and I are rooting for the red team."

"I know. We're rooting against each other."

"We're rooting against each other," Elias repeats. "Mom, what are you writing?"

"I don't know. Just writing."

"After you're done can I see the computer?" Elias pushes his head into my shoulder. "After you're done can I see the computer? Can I see the computer?"

A Couple of Nick's Pictures of the Kids

Still shoveling, will write more soon, Christy

Swinging

What goes down must come up.

Happy Saturday!

The One Sure Thing

So I'm still worried about Elias.

(As if that will ever change.)

The other night he stood at the edge of our kitchen, holding onto the wall. "Come here Bud," I said from the recliner in the living-room. And he dropped to his knees and crawled across the wood floor to reach me.

Before break he could walk the halls of school without his forearm crutches, using only a handheld sturdy-bottomed cane for support. Now he seems off balance even with his two blue walking sticks.

We thought he either pulled a quad muscle or rolled his ankle but we have yet to isolate the source of his pain, or his dis-coordination.

"Has his Cerebral Palsy progressed?" One of the school Noon Duties asked.

Um....

God, I don't know.

He seemed better toward the end of our vacation and I believed he was healing from an injury; and perhaps, like most of us, as he felt better he pushed himself more and has just re-hurt whatever caused him to lose the ability to walk in the first place. I don't know.

"I just don't know how to help him. What to focus on." I said to Nick last night as I wiped a tear from my cheek. "Where do we begin? It just all feels so hard."

He wrapped his arms around me. "It all is hard." And we stood together, not knowing, but together.

80% of parents of special needs children file for divorce. And I can see how easily couples lose their connection amidst the confusion of caring for a child with so many needs.

Visual impairment, cerebral palsy, Autism, incontinence, chronic lung disease, not exactly love letters.

And yet somehow Nick and I care more deeply today than we did as love-struck treckers hiking across the Alaska Range.

And every day I know I am lucky.

As the parent of a child with multiple disabilities it is often easier to say no to social events than it is to attend. At parties one of us is always hanging with the kids, making sure Elias doesn't fall or head butt a toddler. Sometimes I avoid public events because I don't want to face the stares of the curious kids who cant stop watching the boy with canes. There's the diaper changes that grow more difficult as Elias grows older. The meltdowns. The obvious difference in the way he plays or where his attention lands. His complete disregard for personal space. Oh, I could go on and on here but I think you understand.

So we often choose to stay home or head to our little haven above Lowell Point. But its OK because when the kids fall asleep, I'm with my best friend, a man who still makes the butterflies in my tummy dance, a partner who listens and makes me laugh from that place where humor overides heartache at the most unexpected times.

Neither of us have answers for Elias. We both feel inadequate and overwhelmed and we respond in different ways to these emotions. I write and cry and talk. Nick builds and creates and retreats. We both play hockey and soccer and bike or run or ski or elect any activity that gets us outside and moving.

What we don't do is blame each other. We choose not to tear away at our foundation through petty squabbles.  And so when I pull out of the driveway before unplugging my car on a night when its minus ten degrees, possibly disconnecting the block heater, Nick helps me fix it and gives me a hug before I go to my hockey game.

"I'm sorry you have such a spacey wife," I say.

"Its OK," he smiles.

Later, as we sit on the couch, and I cry again about not knowing where to begin with Elias--Do we do an x-ray? An MRI? See a neurologist? An orthopedic? Oh and we still have to schedule an appointment with the ENT. And we see the eye doc next week. And what about his new diagnosis of Autism Spectrum Disorder and ...--Nick looks at me with his waterfall eyes and says, "We will get through this, you know."

And I believe him. Even if the way remains unclear and the "this" has yet to be fully identified, I believe in us.

And I believe in this quirky little family of ours.

Essay in the Whitefish Review

(The following essay started as a post I wrote in 2007 on my old blog From the Mountaintop to the Valley Floor and was just published in the December edition of the Whitefish Review. And yes, you should never reread your published work b/c you will still want to edit the crap out of it.)

It may just be a sentence. A few innocent words that cloak your unspoken fears. Something as simple as: “I’d like to add another goal to Elias’s IEP.  I’d like to see him use more spontaneous speech patterns instead of repeating … to initiate conversation….”
    The words grow more menacing, and pull from the deep when echoed by a second therapist the next day: “When asked what a cow says, he answered moo; but when asked who says moo he didn’t know …Elias seems to have a number of memorized phrases that he uses to communicate…. Echolalic…. similar to children with autism…”
    And there it is.
    No longer hidden. My fears dressed up in someone else’s words. 
    Autism.
    And all I can think about is Dustin Hoffman’s character in Rain Man. A lone individual sitting in a metal chair by a card table, repeating stock phrases as he waits to watch Judge Wopner on TV.  Deficit blinds me.  Deficient is all I can see. 
    Until two goats walk down Doris Street.

I just happen to be looking out the window when they saunter past. “Elias, the goats are outside,” I say, assuming Laura is taking them for a walk. Laura, who we once called “The Goat Lady,” lives on the corner of Doris and 34th and pens her two pet goats in her backyard. She often walks them around the neighborhood on retractable dog leashes. The goats have lived here in this part of Anchorage for longer than we, and the neighbors both love and hate the garden grazers.
    Elias likes the goats, so we regularly walk down to see them and say: Baaah.

At four years of age, Elias cannot stand up by himself.  He uses a walker to travel from our house, down the gradual hill, and to the goats’ pen about six houses away.  Laden with vegetable peels and wilted lettuce greens, Elias will lift his walker through the grass and over the old weathered log in order to get close enough to feed them. The doctors say his cerebral palsy will never go away, but his body will adjust as he learns new ways to move. We have already seen an improvement with his vision, although he still tests as legally blind. Elias doesn’t know there is anything wrong with him.

As I watch the goats walk past I realize they aren’t on leashes but just sauntering down the street on their own. I pick up Elias and carry him out the front door to the stroller so I can run down and tell Laura.
    No car. No answer when I knock. I knock on her tenant’s door and wake-up the disheveled young woman. She shows no interest in helping me round up the goats but does give me Laura’s cell number. I reach Laura as she’s walking into a noon meeting, her car in the shop. “I can try to get them,” I say.  “I got Elias with me, but we’ll try.”
     “I owe you one,” she says and tells me where to find their leashes.
    I find the goats at the other end of our street, eating brown grass in the side yard of an apartment building. I park Elias on the edge of the yard and carry the leashes towards Tiger and Rebecca.  (What else would you name pet goats?) An older woman watches the goats from the basement window. She smiles at me as I approach, then closes the curtain.
    Clipping the leashes on their collars proves to be the easy part. Convincing them to leave their new “field,” not so. 
    “Goats….goats….goats…,” Elias waves his arms in the air.
    “Come on Tiger! Rebecca! Walk!” I cluck my tongue and rub my fingers together. “Come on!” They look up at me with mouths full of grass and take a few steps in my direction. When their hooves reach the road, they stop. “Come on Goats! Walk! Come on! Here we go!”
    I pull.
    They pull.
    And we came to a standstill on the edge of the street.

Autism.
I need to say the diagnosis out loud.
Autism. 
Autism Spectrum Disorder.
Asperger’s Syndrome. 
Autism.
Hard to say.

A young couple drives past, necks craned, careful to avoid hitting us. The man parks at a duplex a few houses down.  “Nice goats,” he says as he climbs out of the driver’s seat.
    “They aren’t mine. They escaped. I’m just trying to get them back in their pen.”
He  smiles and nods.  The woman waves as they walk up their steps.
    “Walk… walk goats…walk,” Elias says as he kicks his legs and waves his arms, laughing. And as if following Elias, the goats take slow steps towards home.  I push my son in his stroller with my left hand, while holding both leashes with my right. We can do this, I think.

It was by the goats’ pen that I first saw Elias pick up his walker to cross from the pavement to the high grass. And it wasn’t long until he learned how to lift the metal rolling contraption high enough to step over the old weathered log. There was a time when we thought he would never walk. He didn’t start crawling until he was two. It is still hard for him to find his balance when he is not holding on to something, but you should see him pick his feet up to ride his walker down steep hills.

An SUV stops at the stop sign behind us; the driver rolls down the window and says: “Hi Tiger. Hi Rebecca!”
    Both goats pull me back towards her car.
    The woman with big blond hairs sticks her arm out, “Hi cutie pies!  How are you?” She turns to me and smiles. “I like to bring them my scraps.”
    “They aren’t mine,” I say.  “I’m just trying to get them back into their pen.”
    “Good luck!” She waves and turns up the steep hill onto 32nd, towards the main road. The larger of the two goats, Tiger, decides to follow. When he puts his weight into pulling, I cannot get him to budge. So I park Elias’s stroller and attach Rebecca’s leash to the handle to free both hands.  As I tug on Tiger’s leash, I hear the stroller wheels move across the pavement behind me. I turn to see the smaller goat taking Elias for a ride. I lunge for the stroller and stand in the middle of the street splayed.

I wake up from anesthesia in a surgery recovery room with a doctor by my side.
    “Where’s my baby?”
    “He’s in the New Born Intensive Care Unit.”
    I look for my husband. “Where’s Nick?”
    “He’s with the baby.”
    “Is he ok?”
    Born at twenty-five weeks.
    A birth weight of one pound and twelve ounces.
    Apgar score: 0.
    The woman in blue scrubs, with honest eyes, says, “He’s alive—but I can’t tell you he’s going to survive.”

Who the hell can help me? We know our neighbors on both sides but I can’t knock on either door. Between Lupus and old age, I can’t ask them to join this fight. It is me and the goats, with Elias as my spectator, all giggles and, “Goats…goats…walk goats!!!!!” 
    Out of pity, perhaps, or boredom, or good will, or darned luck, Tiger finally cooperates, and both goats walk in the direction of their house. As we make our way down Doris Street, I hold their leashes in my right hand and push Elias’s stroller with my left. Again, I begin to think, we can do it.  It’s possible. We make it all the way down the hill, a hundred yards or so to Laura’s backyard, but as soon as Tiger and Rebecca see the pen they change their footing and drag me away from the gate.  I have to let go of Elias. 

    Since I can’t figure out how to lock the retractable leashes, and the cord is longer than I want it to be, I wrap Tiger’s leash around my hands a few times to pull the large goat closer.  As I do this, Tiger’s legs get wrapped up in the cord, and for a moment I know either he is going to break a leg or I am going to lose a finger.  For a moment, I’m scared that what began as an unexpected break from the norm will break me.  That the cost of fully living will be greater than I can bear.
    “Help,” I say, out loud, from that place between laughter and tears, “Help….Help!” Not loud enough to be a true cry for help but loud enough for me to acknowledge that I am in no way in control of this situation.
    My body relaxes and I stop pulling. Tiger snorts and shakes his head, and then he leads us right past the gate and into the pen.  Elias smiles and kicks his skinny legs from his throne: “Walk, goats, walk!”