Following Elias

The Girl Who Cried Nurse

Our school nurse decided to stop documenting Olive's visits after one or two trips a day, every day, for the past two weeks.

"What now?" I ask when I see Olive walking down the hall with the giant yellow nurse pass around her neck.

"My head feels hot."

"I need ice for my knee."

"I need a bandaid," she points to a well heeled scab. No blood in sight.

"My stomach hurts"

"My back hurts."

"My lips hurt."

"I have a pokey thing in my tights." And when I offer to help find the pokey thing, she says, "No, I need the nurse to check it."

I've been trying to figure out if attention or avoidance fuels Olive's frequent cries for first aid. Does she want to get out of class or does she want to spend one-on-one time with Nurse Leanne?  I dont blame her for either one. There's a whole lot of sitting criss-cross with a bubble in our mouths in kindergarten, especially for an active kid, and Leanne is one of my go-to people to visit, she's kind-eyed and a good listener with a warm smile.

Nurse Leanne also offers kids "magic water" for headaches and chapstick for dry lips, with an endless supply of colorful bandaids and lost tooth necklaces. 

My guess is its a little of both--attention and avoidance-- and though I don't mind Olive visiting the nurse, I dont like her faking ailments.

Nick and I have both talked to our daughter about the boy who cried wolf and the fear of staff not believing her when she honestly feels injured or sick.

And yet still, every day, I see my little pixie prancing down the hall with an impish look and "a problem" that Mom can't fix.

The other night as I helped Olive after a bath, she danced around her room naked, lean and strong, and wiggled a pull-up over her hips.

"Olive, its time for you to be done with pull-ups."

She stopped dancing and put her head down. "Ok," she said in a small voice.

"Your body knows how to use the toilet, Olive. Most of the kids in your class are done with nightime pull-ups."

"But I like them." She sat down on her rug, legs crossed, and I knelt before her.

"Sweetie, you dont need them though. Your brother is different; he can't feel when he has to go. You feel it here and here," I said, patting her. "Your brother doesnt feel it. He can't control his body like you can."

"But Mom," she looked me in the face,  "I want to be like him."

Oh, my heart.

"Oh Olive, I love you. Know how you can be like your brother? You can be curious like he is and ask lots of questions. You can have a sense of humor-"

"What's humor?"

"You can laugh a lot, like you know how your brother just laughs when he falls down."

"Yeah, remember when I laughed when I fell down..."

And just like that, we are on to another topic, but my heart still sings with Olive's desire to emulate Elias.

And suddenly I see Olive's trips to the school nurse under an illuminated light.

But I want to be like him. 

I want to be like him.

The Eiffel Tower

I saw them all displayed in the hall, pencil-drawn replicas.

I passed the drawings without really looking, countless times, on my way somewhere, always somewhere, never really knowing why, or what, just a school counselor responding to a call.

Beckoned the way the alarms in the NICU once made me repond.

Alert, unsure, and open. 

I knew the sketches were from Ms. Becker's class, Elias's teacher, and just assumed my son skipped this activity.

(O.T., P.T., Speech, School Psych, you name it, he could have been elsewhere.)

Walking back to my office after lunch one day, I scanned the drawings more closely, looking for one that might resemble an Elias piece of art. My eyes locked on the messiest one on the wall, the lines not quite matching up-- but when I zoomed in I saw action figures, little soldiers with speech bubbles, and knew instantly, it was not my son's.

 And then after school Elias's T.A. asked, "Did you see Elias's Eiffel tower?"

This. Elias drew this.

My son who wasn't expected to live and when he did, they said he might be delayed.

Special, disabled, handicapped.

Retarded, damaged, less-than...yours. And your and yours and yours.

(Or so I felt, until I found my tribe.)

Less than all the children that inhabit a world of healthy births and days without hospital stays. Children who develop naturally with able-bodies and fully functioning brains.

Not my son.

My son who just sat down and sketched the fucking Eiffel tower.

(And sure, his T.A. helped him stabalize the ruler and think about his angles but Elias held the pencil.)

That's my miracle child.

It may not be walking on water, but its enough.

Hell yeah, it's more than enough. More than enough for me to believe that children all over the world will continue to defy expectations, especially when our stunted vocabulary gets out of their way.

Happy Friday all!

Faded Fears

Lost most of my Dahlias the last two nights as temperatures dropped below freezing; but the sun returned after 13 straight days of rain, so it all balances out with the wind.

And for over a week now, eleven days and counting, we've had the pleasure of our amiable boy back. Positive, helpful, and even flexible, leaving social gatherings with ease, completing work in school, refraining from hitting (mostly). Even when his little sister triggers him, her speciality.

I don't know if its hormones or headaches, but I'll take the days when I see the light in his eyes over those furrowed brow melt-downs on his off weeks.

I swear, I was starting to truly dislike Elias for as much as I love him.

I wanted him to go away so the rest of us could breathe without the threat of claws and mayhem over minute variables, or at least to me, Mount Denali to Elias, the movement of an ottoman from one room to the next in the arms of his sister as she sets up her home office in the middle of the living room.

This.

Enough for swinging canes and the battle cry: "I want to hurt you!"  

From a boy who loves everyone.

The friendliest kid on the block, full of compliments for middle aged ladies. You look beautiful today. You are a great teacher. I love your granite countertop.

The one who laughs at himself when he trips in the yard and cracks a joke, "I got hosed!"

My eleven-year-old boy who still likes to hold my hand as we admire our flowers.

"Is that Borage?" he asks.

"Yep, good memory." Not bad for a legally blind boy with an injured brain. A mystery brain that baffles me with its complexity, its ability to compensate, its computations that I will never know.

What does he think?

What does he see?

What does he feel?

All I know is I like him again. Love him dearly. Trust him, just enough, to take him to two playgrounds back to back on Saturday, still with fear he'll freak out, but muted, like a bottle that's been left in the sun too long, so you can no longer read the warning label.

Happy Friday: Or the Difference a Day Makes

"Can I have one of your pillows?" I ask Nick when he gets back in bed after taking the puppy out.

Olive lays draped over my two so my head rests on the mattress and I just want to go back to sleep.

"Yeah, but its almost six..."

Ah, but the lack of light, its gotta still be the middle of the night.

"...and the Northern Lights are out."

I sit up-- it's been way too long since I stood beneath the Aurora Borealis.

We walk out the back door and I see what appears to be a bright white cloud overhead, but instead of focusing on it, I look towards the northern horizon where faint auroras appeared once or twice before.

"Look up."

I look at the "cloud" and see a flash of pink within a stream of light green that pulsates across the sky, changing shapes with a fluidity that makes me wonder about magic, God, science, and love, all in a breath that catches in my throat.

We stand, Nick and I, in our bathrobes and bare feet, with our necks cranked back, eyes on the sky, mesmerized, until just like that, the light dissipates and disappears.

Not a bad way to start a Friday.

"Mom, come here I need to show you something. Mom, Mom, Mom..."

"Alright Bud," I dry my hands on the dishrag that hangs on the stove, and follow Elias to the back door.

"Isn't the sunset beautiful!" Elias holds open the door and bounces as he points towards clouds backlit by the sun as it lays down for the night.

"It is."

Beautiful.

"Do you see the pink and the orange!"

"I do."  Elias grabs my arm and we stand in the doorway, eyes outward, just a mother and son, caught by beauty. "Thanks for pointing it out to me Bud."

""Your welcome," says my boy.

And just so you know, if I died today, I'd depart on a good one.

Happy Friday all!

 

Losing Light

Over five minutes of increased darkness from yesterday, ten minutes from the day before, fifteen minutes from Sunday...

I feel it in my bones, the approach of winter, the loss of light, the switch from warm timeless days to alarm clocks, schedules, and florescent lights.

Its dark at 6:00 when my alarm wakes me for school and I find myself not wanting to rise. Every year I struggle during this transition time from summer to fall. And in Alaska fall arrives with winter barking at her heels, rushing this short season onwards and out.

Nothing gold can stay, a line imprinted on my brain from reading The Outsiders in the back of our old orange station wagon as we drove to the Cape as a kid. Just like Ponyboy, I still yearn to hold onto all that is good and pure and never let it change. But change is the only constant.

I find myself longing for my easy-going Elias who never melted down in public and who brightened the world with his smile. I want him back. Not this surly eleven-year-old kid who pulls his sisters hair and then yells, "I did not!" when confronted. Who screams at Nick and me and claws at us with his hands as big as mine.

I wish I understood the angst behind the anger. Is he overwhelmed? Misunderstood? Frustrated? Hormonal? Or just plain aggressive and defiant?

I don't know.

He rubs his eyes and looks away when we try to talk to him about his behavior or he denies any wrongdoing.

"I didn't do that!"

"No I didn't!"

God, am I tired of hearing this. And I'm tired of silence. The classic non-response to our questions. Or the random question that has nothing to do with our conversation.

"Elias, I notice you seem more frustrated lately."

"Mom, what is that spot over there?"

And I find myself trying to pull him apart in my search for solutions. Is it a sensory issue?  Processing delay? Motor control?  Problems with communication? Is it the Autism or the ADHD or the visual impairment or the CP or being eleven or something else all together like pisces in vertigo in an odd numbered year?

And I'm just tired and worried and tired of worrying, as our respite beween blow-ups seems shorter now that the school year has begun and his behaviors seem to be spilling beyond the walls of home more and more. Pushing and hitting kids. And staff.

And, and, and...

I cling to moments when I can exhale.

Today, I stood outside Elias's portable classroom, on my shrunken soccer field (due to construction) waiting for the 5th and 6th graders to emerge for recess. The door opened and boys poured out, including Elias who used his canes and head to push against a kid who passed him on the stairs. 

Oh shit, here we go, I thought, as both counselor and mom.

But then, one of those kids who you can count on to do the right thing when no one is looking, stood behind Elias with his arms wider than normal, not too much to be obviously restraining the masses, all itching to get outside and play, but just enough to prevent anyone else from pushing past Elias till he made his way down the three steps with his canes.

The boy caught me watching and I smiled and gave him a thumbs up, to which he just shyly nodded and ran to the field.

I cant shield Elias from the world that moves too fast, as much as I wish I could. My own armor wears thin, especially around my heart.

But as we turn away from the sun, I can try to remember to look for the stars.

Meet Our Newest Family Member:

Lola, named after Lowell Point is Seward.

 

Tonsina's not so sure about her, but the rest of the family's smitten.

Happy Friday all!

As the Seasons Change

(Written last night)

I just cut giant swabs of garden cloth to cover my Dahlias, still thick with buds, not yet ready to see these charismatic flowers shrivel with winter's chill.

 

Deep frost warning tonight in Anchorage. September 1st, and fall's short stint already prepares to welcome an endless winter, one that dwarfs our other three seasons with her long nights and frozen days.

Ah, but in September the afternoon sun still holds summer's warm embrace, and temperatures can jump 30 degrees as morning moves towards evening, from frigid to sixty degree sunshine before day's end.

Days pulled between poles like the mountains that leap from sea level to the sky.

(Three generations of Jordans fishing for salmon.)

And the earth warms. Glaciers melt and sea levels rise.

Climate change, not a leftist conspiracy to halt development but a term just as twisted and misused by the far right as "family values" or "pro-life"-- and a reality for folks living in the Arctic, as they watch the melting permafrost threaten their livelihoods, their communities, their homes.

President Obama visited Exit Glacier in Seward today and will soon be the first sitting president to visit the Arctic, landing in the village of Kotzebue tomorrow to discuss the impacts of a warming planet and changing weather patterns--like lightning strikes in a state unaccustomed to thunder storms, fueling over 300 wildfires in a day. Like winters without snow and record setting 70 degree days in June, July, and August in the "Great White North."

I'd much rather not believe, put my head in the dwindling snow, blame Obama for forest fires and hurricanes and head to the mall to indulge the American way of buying shit we don't need. But I care too much about all the children in my life, and the world we will leave them. What about their gardens to sew and their plants to nurture and protect when the weather suddenly changes?

So I do what I can on this small swath of land. Growing carrots, kale, potatoes, tomatoes, beats, chard, lettuce, leaks, orach, cabbage, pumpkins, strawberries, beans, raspberries, peas, and as many flowers as my pots and garden beds can hold to remind me of the importance of sunshine and rain. To bind my family to the earth, with sun-kissed faces and soil between our toes, so we don't forget the rhythms of life that brought us this far. 

Even as the seasons change...