Following Elias

Empathy

More than walking unassisted,

more than seeing clearly,

more than eye contact,

more than healthy lungs,

more than academic success,

more than using the toilet instead of wearing diapers in the third grade,

more than balance, growth, movement, vision, speech,

I wish Elias could understand how other people feel, that his actions have reactions, and people are not mere obstacles in his way.

Who knew this would be the hardest part?

Oh that moment...

...between foolishness and fear.

You got enough courage to get you there but when you realize what will happen next cowardice takes a hold. You scream but keep going, like on the summit of a roller coaster; you can't stop now but oh, shit.

That was me tonight playing hockey, skating toward the big defenseman on the point when I know she's winding up for a slap shot. I know because she already hit me once in the skate on my last shift. Hard enough for me to mutter, "Mother F..."

But not hard enough to make me fall. The puck bounced foreword and I chased it down hoping to score. I didn't. Didn't even catch the puck. But I tried.

This second time I should have known better. Should have asked myself is it really worth it? Do I really need to put my body between the goal and that hard rubber puck that she's about to blast my way? We were up 5-0 and there was only ten seconds left.

Ten seconds.

What would it matter if they scored, really?

But you see, you don't stop skating till the final whistle blows. Not if you're an Everett. Not if you're born with competitive genes. Not the skinny-gene type of competitive that wants to be better than everyone else but the work-horse-genes that just wants to push yourself harder each time. Wants to push your body till it almost breaks but doesn't.

Wants to leave everything on the ice so when you return to the locker room you never think, "If I only tried harder.."

Wants to take one for the team.

Like a big ole bruise between my shin and my calf because I still skated at that strong defenseman, not wanting her to get a shot on net, even with ten seconds left, but I screamed and turned as she drew her arms back, not nearly as brave as I think I am, exposing the part of my leg not protected by pads.

Perhaps I should write that again: Not nearly as brave as I think I am.

Caution creeps in with age and I'm not so young anymore. Turned forty this year. And I'm a Mom.

A Mother Bear full of bravado but I still want to return whole to my kids. I need to return whole to my kids.

I may charge but its a bit of a bluff these days. Where after a game you'll find me limping home, sneaking into Elias and Olive's rooms so I can kiss them goodnight.

Where everything I write somehow returns to them.

Even a story about hockey where for three blissful periods I am not Mama or Mommy.

I am not even Mom.

(Oh, but I am.)

Recovering, happily, Friday

Not only is my husband Nick home from a successful spinal surgery, but while he was under anesthesia the University of Alaska called to offer him a job as an Educational Specialist with the Trio program to support disadvantaged middle schools students start on a track towards college.

And there just so happens to be a new Montessori preschool, located right next to UAA, set to open the week he begins work. (Olive is now the 4th student to enroll.)

And...

...last night the Superintendent and the Anchorage School Board, after listening to public testimony, decided to cut fewer counselors, reinstating eight of the positions proposed to be eliminated-- which means I might just make it one more year with a job.

(Might. Won't fully sigh until I get past May without a pink slip. But I feel a hell of a lot more hopeful than I did yesterday.)

So in that magical way that life works, from feeling like the very ground beneath my feet might disintegrate to watching the sun rise yet again, I think we're gonna make it through another storm.

Thanks for all your support and a Happy Friday to all.

PS. Did I mention that Bruce and Kathy (Nick's parents) took the kids for the weekend so Nick can rest and I can focus on taking care of him?

Feeling pretty lucky right about now.

While he Sleeps...

...and while the surgeon slits his neck,

breaking nerves,

moving his esophagus to the side,

replacing discs with cadaver bone,

inserting titanium plates,

and fusing his vertebrae,

I will be here waiting,

drinking coffee, eating a Lara bar,

typing words as a prayer to Him

and to Her

and to the unknown powers that protect patients,

my husband,

from the long dark night.

I will be here roaming the hallways,

people watching,

checking email,

and Facebook,

and the news,

and the time,

all the while,

waiting,

waiting,

to see his blue eyes open,

to kiss his cracked lips,

and to tell him

"I love you,"

yet again.

I Wish You Could See Him Dance

Every other step a balance check, hands waving, knees bobbing, head shaking, on the edge of control with no rhythm but his own. Smiling, clapping, shouting: " Dance party!! We're having a dance party in the kitchen!!"

And I forget that an hour earlier he had me in tears, as Nick carried him to his room while he grunted and shouted, "Noooo!!!" Hell bent on destroying his sister's "house", determined to steal her brown fleece blanket and claim it as his own, he had swung his arms at me when I stopped him, my brow furrowed, jaw clenched, I walked away with my hands over my face, frustrated that yet another Friday night felt ruined.

"Do you want to dance with me?" Elias asks after quiet time in his room. No Olive in sight. No Nick. Just me and my son.

"Yes, yes I do." And I throw my arms in the air, shake my hips, swing my hair, and dance as if every step will erase the moments before. Will release my need for him to feel sorry for his hurtful actions that seem both within and beyond his control.

I stomp my feet, whip my hair and Elias asks, "What are you doing?"

"Dancing."

"What am I doing?" Elias bounces his knees, his version of jumping, and shakes his hands at the wrists.

"You tell me." I shimmy towards the fridge.

Elias turns his head from side to side. "Mom what kind of dance move is this?"

"You have to name your own dance moves, Bud. I'm just moving my body to the music however feels right."

"Me too!"

And we rock out to John Mellencamp, music from my youth, under the kitchen lights, until a slow song plays and Elias leans into me.

"Do you want to learn how to slow dance?"

"Yeah."

I put one of his arms around my waist, my hand on his shoulder and grab his other hand. His legs become jelly and he falls into me.

"You need to stand on your own," Nick says, as he walks through the kitchen to check on Olive.

I try again, this time just holding his hands and attempt to teach him the box step. "Step forward, one two, side, one two, back, one two, side..." Again he leans into me, his legs just hanging from his hips as I drag him around the square.

"Stand tall Elias, on your own, now step towards the table one, two. Now fridge, one two. Sink, one, two, now oven on two. Table one two, fridge, one, two, sink, one, two, oven..."

He's smiling now and doing the steps on his own, standing tall, laughing, as I name the familiar objects.

When the song ends he says, "I got an idea."

"Yeah?"

"Let's do oven, fridge, sink, table."

"OK. Ready? Oven, one two, fridge, one two, sink, one two, table..."

And this is how we dance, following a map of our kitchen, changing the pattern up to add a wall, a five step jig that shifts the energy of our house from heavy to light, making it a little less stressful of a Friday night.

But oh, how I wish you could see him dance.

Love...

...will carry us through.

Wherever through may be...

The Stress in Our House

I may lose my job as an elementary school counselor due to district budget cuts; even though our state is the second wealthiest in the nation.

(And there already isn't enough time in the day to respond to all the needs of my kids.)

My husband Nick hasn't been able to work-- as a neighborhood handyman under the business he started called Third Hand--for almost two months due to an injury.

Nick has a date with a neurosurgeon to fuse two of the discs in his neck, one of which jabs his spinal chord and could paralyze him if he slipped.

He also just interviewed for a job, with the University of Alaska Anchorage, which would turn our schedule upside down but save us from bankruptcy if the district hands me a pink slip.

And of course, we never know when Elias will flip from our sweet charming son to a diabolical torturer of sisters and all who try to stop him.

Its February in Alaska.

Happy Monday Everyone.

One of the Gifts

"I'm the slowest kid in my class." Elias says when I ask him to use his spelling word slowest in a sentence.

Nick stops on his way out the door and glances at me. I sit next to Elias at the kitchen table and bite my lower lip.

Elias looks down at the words on his worksheet.

"What do you mean by that Elias?" I feel the familiar pooling of water. "Do you mean slowest walking or running?"

"Walking." Elias says, still staring at his paper.

No angst in his voice. No sorrow. No "whoa is me."

I look at my boy who doesn't look at me. "Are you OK with that?"

Because I'm obviously not fully OK with it yet...

"Yep."

I should have asked, how do you feel about that, but I am the one emoting not my son and I'm pretty sure if I had rephrased my question he would have said, "Good."

He's good.

He has poor balance due to Cerebral Palsy and walks with assistance down the hallways at school, often holding his Aide's hand, as his classmates patiently wait behind him or widen the gap between them as they walk ahead.

But he's OK being the slowest kid in his class.

He's OK!

The other day, Ms Julia told me they had to write why they were unique during a lesson. Elias dictated to her: "Because I'm the only one with canes."

Just like that, matter of fact.

And this, my friends, is one of the gifts of Autism.

"I love you all the time. I can't believe tomorrow you'll be nine."

And with a ruffle of his hair, I said good night (and good bye) to my eight-year-old boy.

Happy Friday Everyone!