From the Mountaintop Archives

Micro-preemie, Moose poop and puddles

Sometimes I need to be reminded how far he has come.

Need to remember that for months he could not breathe on his own. That he weighed the same as a can of stewed tomatoes in my cupboard: one pound twelve ounces.

Remember that he survived five surgeries and significant trauma to his brain.

Remember that his heart stopped.

And yet here he sits. Here. Right here... telling me he loves preschool. That Ms. Robin is nice. That he loves going up the big hill and to the obstacle course.

Here he is listing off his classmates names and asking for more food. For more playing. For more reading and singing night night.

Here he is.

“Is he always this happy?” a mom asks in the waiting room of Elias’s PT clinic.

He generally wakes up with a smile. He has never had a meltdown in public. Should i say that again? He has never had a meltdown in public. Never even cried loud enough to disturb people across the room. He loves car rides. Loves them!? And going to Cost-co or Fred Myer is so exciting to him that he does a Tigger bounce—only his is a little less aerodynamic. His six therapy appointments a week  translate to more social play time for Elias. Life is one big party. One adventure after another, with crying reserved for the middle of the night.  A ploy to make daddy climb out of bed and scoop him up so he can spend the rest of the night between us. I'd call those tears more tactical than sad.

“Yes, he’s generally a pretty happy guy.”

It is ME who often feels discouraged with his disabilities not him.  Me who grieves the phantom three year old who entered the world obstacle free.

Me who feels sliced by sadness when a baby stares directly into my eyes or when a toddler runs and jumps with ease. 

Elias just smiles and says, jump, as he lifts the front wheels of his walker and puts them back down.

His heart stopped. So now he wears it on the outside for all to see.  Look at me I’m alive!!! We are ALL alive!!!!! Let's bounce!!!!

Three years ago in April, I spent 24 hours a day in the windowless NICU pumping and waiting to hold Elias to my breast, hoping he would learn to suck, swallow, and breathe. Pumping. Hoping we could continue to wean him from oxygen. Pumping. Celebrating every gram gained, every latch, every ounce of milk consumed. Pumping. And counting down the days till we could finally bring our baby home.

Today he asked to drink out of an open cup instead of using his covered cup with a  straw. He wore his first pair of genuine Levis and discovered one of my secret doors to childhood: Bigga puddles!!!!!

He navigated his walker in and out of potholes filled ankle deep with water, on purpose, only to return and try it again.

He discovered that the walker doesn't roll as well in mud but it didn't stop him from going through it by lifting the walker up, setting it down further ahead, and then stepping.

He rolled through snow and moose nuggets, stopping briefly to examine both. Moo Poo!!! He lifted the walker up and over PC piping and curbs. He wanted to try going up the neighbors stairs but that's where I stopped letting him be the leader of our walk. A walk that led us around and around in circles from puddle to puddle, bump to bump.

The Short Bus, Reconsidered

When I picked Elias up from preschool today he strolled right past “mommy’s green car” and followed the other kids to the school bus. He stood at the bottom of those gigantic steps and waited to load.

He hasn’t ridden the bus yet but we plan on using it in the fall so I’ve been inquiring about a trial this spring to figure out how it works. Since Elias had parked himself at the bottom of the steps anyways, his teacher decided to ask the bus driver if we could practice getting on-- to determine whether he could climb up the steps or not, and find out if we needed to order a specialized transport stroller. Another item that could get caught in the red tape of Medicaid and arrive just in time for his 21st birthday.

(We are still waiting for his walker and I hate to think about where he would be if we hadn’t been able to borrow one for the past six months.)

Elias climbed up the oversized steps with minimal assistance and met JD, the bus driver, who greeted us with a “wide warm smile.” 

(I just stole those words straight from Corduroy, Elias favorite book. “Wide warm smile”: I don’t know what it is about that phrase but I just love saying it out loud with a slight southern drawl. Try it: Wiiiide warrrrm smile.)

JD shook my hand and said it wouldn’t be a problem for Elias to climb up and down without the use of the stroller. He and the bus aid would help he said. The aid smiled too and told me, “I hope he gets our bus-- he’s so cute.”

Cute sure goes a long way. I wish I could bottle it and spread it around so everyone would be wanted on every bus. Everywhere. I wonder how Elias will be received when he is no longer a “cute little kid.” Will as many doors be held open? Will as many people smile? I think of this now when I see adults with visible disabilities. I also find myself wondering about their parents. Did they have support? Resources? Hope? How did their lives change?

Stepping down from the bus challenged Elias more than going up, but we made a plan for him to climb down backwards. And now as soon as I am ready to start the paperwork he can ride to preschool with the other kids. At least for a couple of days a week so I can still visit the school regularly and talk with his teacher and therapists.

Ride the bigga bigga bus, he’s been saying ever since.

And to think, the thought once terrified me. Not the short bus. Not my child. No way.

It’s just a vehicle. A classic mode of transportation. A way to get from point A to point B.

A short yellow school bus filled with determination and dreams.

Easter in Anchorage

No grass. No blooms. No sun dresses and short pants.

Though I can't complain since the forty degree weather feels balmy to us and word is New England's temperatures were about the same as ours.

(Ahem...you all should move to Alaska. You know who I mean.)

No down coats. No wool hats. No mittens.

And the melting snow pile acts as a great backdrop to help a boy who can't see too well find his eggs:

So what if he thought they were balls and threw them as soon as he picked them up.

He kinda sorta makes up his own rules.

And that's OK.

We'll keep him.

(Showing off his Easter haircut)
<

Unexpected Joy

I gravitate here more often on those days when the earth seems to pull me closer to her core. When my feet sink into inches of mud. I write less when I’m light.

When I am air.

I discovered this when I flipped through old journals stored in boxes in my parents’ basement. My writing leaned towards despair in more entries than not but there were weeks in-between writings. Sometimes months. Too satisfied to write.

In my last entry, I wrote about the look of disgust I caught on a woman’s face as she turned away from Elias. But have I told you about the thousands of unexpected smiles?

Elias wheels joy into the angst and insecurity of shopping malls.

People turn at the sound of metal and rubber stalking them to the surprise of a small blond boy with a walker. And their faces change. They brighten.

Sometimes their smiles are more nervous than joyous but even these nervous smiles offer a flicker of light.

*****
Three teens, dressed in black with chains, multiple piercings, and elongated ear holes, go out of their way to hold the doors to the mall open for Elias.

They wait patiently, and watch Elias with delight as he maneuvers his walker not around but over every crack and bump in the sidewalk. He calls them speed bumps and will go out of his way to find uneven ground.

Like the teens holding the doors, Elias will not take the straight path.

And by the way they smile, I see the little boy in each of them, instead of the Goth exterior that can frighten me because it is a look I do not understand.

I don’t know why we fear what we don’t know? Is it a genetic trait passed down from our ancestors to keep us safe from Saber Tooth jaws? Or are we socialized to respond to our own kind?

*****
Two first grade boys sit in the hallway and watch Elias and I as we arrive late for his morning preschool class. One of them stares at Elias's walker with a quizzical look. The other one smiles.

The skeptical one asks, “Why does he use that?”

“To help him walk,” I explain.

“He can’t walk?” the boy responds.

“No, not yet.”

The smiley one says: “ When he’s a kid he’ll probably be able to walk b/c he’s just a Pre-schooler.”

I smile, “We hope so.”

“Why can’t he walk?” asks the boy who has yet to smile.

“Well, it’s kinda complicated. His brain has a hard time talking to his muscles.”

As I say this, Elias goes over to the boys, lets go of his walker, holds onto their chairs and says, “Hi!!!!”

The smiley one says,  “Hi!!!! What’s your name?”

“Yia”

“His name is Elias, “ I clarify.

“My name is _______,” he says to Elias, “and this is_______,” he points to his neighbor.

(I can’t remember their names.)

“Can he walk without it?” asks the quizzical one as Elias cruises from one chair to another.

“He can do what he is doing now, hold onto things and cruise, but if he lets go he loses his balance.”

“Does he fall down?”

“Yes, he falls down a lot-- but he’s pretty tough.”

Still no smile.  Still not sure.

“How does he get around at home? On his knees?”

“Yeah, he still crawls.”

The smiley one asks Elias in a sing song voice, “Can you show me how you crawl?”

Elias, as if we practiced this, moves to the floor and crawls around the corner of the hallway.

And the skeptic finally smiles.

Both boys get up to follow Elias.

The smiley one reaches his hand down to Elias and says, “Here I’ll help you up.”

As Elias stands and struggles to find his center of balance, the boy says to me: “I can tell he has a hard time walking”.

I give Elias my hand and together the boy and I walk him to his classroom.

The skeptical one stands behind us with a smile. It is not as warm and open as his friend’s but in the space of a small conversation he moved from scared and unsure to OK.

That’s progress.

*****
I think it’s easier with kids to make these shifts then it is for adults who live within facades of political correctness too afraid to admit that they aren’t always comfortable with what they don’t know.

Terrified of giving the wrong reaction we sometimes avoid situations where we mingle with uncertainty. I know I still gravitate towards people that look and act like me. So much so that my own child can scare me.

But he won’t let me hide.

And I love him too much to stay in my own tent and avoid the unknown.

So we travel.

And the truth is, I sometimes find the general tasks of parenthood—waking, feeding, changing, responding, comforting, teaching—more challenging than visual impairment and Cerebral Palsy.

Sometimes preparing a healthy breakfast, every morning, without fail, the relentless routine of daily care, the drudgery of endless repetition, is worse than walking through the mall with a legally blind boy and his walker. 

I revel in the unexpected joy we give and receive.

*****
A man with temporary crutches waits at the elevator with Elias and me. He smiles as Elias bounces and says, “abater” over and over again.

“Is he yours or are you watching him?”

“He’s mine.”

“He may have challenges but he’s awfully cute.”

“Thanks.” I smile.

And then he gives me this gift, this way of asking Elias’s story, which breaches the perceived distance between us all:

“I know I have a lot of challenges. What are some of his?”

A Partial Recovery

I lost my mind last night. Lost the words I discovered in the act of writing. I remember what I wrote about and could probably piece something together but I can't recreate the writing process.

I can't suddenly realize what it is I mean mid-sentence and let the words lead me somewhere unexpected.

This is why I write.

So I can make sense of the jumble.

I started the lost post disturbed by a look of disgust I witnessed on a woman's face as she turned away from my son.

As she reverted her eyes from Elias's figure, I saw her face in the mirror.

Revulsion.

And I hated her.

But by the end of almost two hours of writing I felt only compassion for this woman who's fear I recognized. This woman who's story I did not know. Only my assumptions formed through a looking glass.

I looked in the mirror at myself and saw her face.

Writing can do that.

@#$%*#@

Did it again. Lost an entire post right before publishing it. And it was a long one about the way people stare at Elias with his walker and what it means to me. I was just adding a few links and then it was done-- but my stupid computer froze. And i can't even blame it b/c i'm the idiot who didn't save. You'd think by now, after losing countless papers and essays, I'd learn to save as I write. Its almost one in the morning so i'm not going to recreate it-- just vent. And with another  crazy day tomorrow I may not get another chance to write till Wednesday. F@#%$ing F&*@* SH&%$@#@!

No missing teeth yet but if so it would be worth it

I've been away from the Internet for a few days due to  sixteen hours of class time on Friday and Saturday as well as five hockey games over the weekend. I played in Alaska's  Fools on Ice women's hockey tournament--a fitting name-- and my team lost by one goal in the championship game. 

One freakin' goal.

And yeah I know it's great that we made it to the finals but second place is not quite as satisfying as first. And I feel like I'm cursed to be the runner up since I've played on three different teams who have all lost in four different championship games over the past three years. But I would do it again even if it meant losing perpetually. Today. Even with bruises all over my arms from pucks and stick and my own reckless checking of my self into the boards. Yep, if it was Groundhog's Day, I'd wake up and play and wake up and play and wake up and play.

This is how I know I love the sport.

I am a non-morning person who asked the organizers to give my team the dreaded  8:00 am game on Saturday so that I would only be an hour or so late for my all day class. And I didn't even make up a better excuse for my professor, like Elias had a therapy appointment or something more responsible than a recreational hockey tournament, but I just told her the truth. That I would not only be late but also have to leave an hour early due to my tournament. One of the perks of being an adult student is that we can make these kinds of decisions. I wasn't about to miss the last games of the season, my last chance (till the fall) to skate with abandon, to forget, at least for three 18 minute periods, about my worries for Elias, about school-work, about all the pieces of my life I desperately try to control. Just me and ten other sweaty women chasing after a little black puck.

This is how I know I love the sport.

On Saturday morning, the day of our second and third games as well as my class, I woke up at 6:00 am with a migraine headache bad enough to make me lose my oatmeal. I lay on the couch unable to move my head quickly or turn on the lights, with no food in my stomach, thinking if I was sensible I would miss my morning game, go back to sleep, and if I felt better when I woke up, catch the rest of my Career Counseling class and the afternoon game.

Instead I slowly packed my hockey gear and drove to the rink.