From the Mountaintop Archives

For Anchorage Folks:

Turn your radio dial to 107.5 between 6:00 am and 6:00 pm on Thursday and from 6:00 to noon on Friday to hear stories from families who have spent time at Providence's Children Hospital.

Last year "Kash for Kids" raised almost $150,000 to support special programs for children and their families at Providence.

Elias and I will be live on the air at 11:00 a.m.

(That is if I can keep him from squirming away to crawl to the elevators and escalators since the interview is at the Dimond Mall, only a few feet from the stairs to swim therapy.)

"Would you like cream and sugar with that?'

Last spring I shared with you Elias's first three word sentence. (Oh Dear, Beer)

And now this:

His first make believe play.

There is a toy kitchen in the wait room for OT and Speech. He does not pretend to cook food or clean dishes.

Oh no.

He pretends to make coffee.

Hmmm...

Is he trying to tell us something?

Found Pictures

but he's here. he's here

Elias woke up on his birthday, sat up in (our) bed and said, "elevator!"

The boy is obsessed with elevators and escalators. He talks about them every day, multiple times. Find an elevator. Push number two. Ride an ecalator. Ecalator goes up. Ecalator goes down. Someday Elias ride an ecalator. Ride an elevator bery bery soon.

So planning his birthday was easy.

After an outside walk at the zoo where his favorite animals are the talkative ravens--there are two with injured wings in cages and plenty more who just show up to mock the other animals-- we went to the Fifth Avenue mall and did not buy a thing. We rode the glass elevator and let him push the buttons. We went up and down the five flights of escalators holding his hands so he could stand up and ride. And Elias talked about elevators and escalators for the rest of the day.

It's the escalators that made him fall in love with Corduroy, the book by Don Freeman about the little bear in green overalls who lives in the toy department of a big store.

In the story, a little girl wants to buy Corduroy but her mother says that he doesn't look new because he lost one of the buttons to his overalls. This sends Corduroy on an escalator adventure to find his missing button, which ends with the night watchman returning him to his shelf, where he wakes to find the little girl smiling at him. She wants to buy him regardless of his missing button and does so with her own money from her piggy bank.

And Elias may love the escalators but I love that little girl who saw a bear to love and not a faulty shoulder strap.

She's a good reminder for me on those days when I can only see what's missing.

So are the following words from Bon:

i'm not quite sure how to say this. i know Elias' entrance was hard and untimely, and i know you know you're blessed...you share that blessing, with all its challenges, every time you write. and i think the pain his birthday brings back up is a natural human response to an an incredibly traumatic event.

but he's here.  he's here.

had things not gone so successfully for Elias, you'd still be remembering those hard, terrifying days in the NICU on this day, trust me. and your fear, and the trauma, and his tiny face. except...he wouldn't be here. and you would give anything to have his face in front of you, and if you could, the NICU and the fear be damned.

i know you celebrate Elias every day...that shows. and the trauma his birth dealt you is something i respect, and not something that can ever be just put aside. but don't grieve his birthday, even though it was a brutal entrance. he's here. this is his day.

and as hard as today is, there are some of us who would give our skin to be in your shoes, celebrating our son's third birthday with cookies and kisses. that doesn't change anything for you, i know. but i guess i want you to celebrate a little extra today. celebrate your triumph over all the hardship. celebrate your luck. celebrate your son being here, and screw the rest, just for today.

(and forgive the sermon...?)

happy birthday to your beautiful, beautiful boy.

At the zoo Elias told us the ravens were talking to him.

My guess is that they were celebrating too.

Happy Ambivalent Birthday Elias

Three years ago, Elias kicked his way out of my womb four months sooner than expected. This is not a joyous anniversary but one marked by terror, prayers, and a forced entrance into a foreign world: The Newborn Intensive Care Unit.

A far cry from the home birth we planned.

But despite the monitors, wires, and alarms, we became a family in the NICU. And as rough as our road has been it is the only one we know. There is a strange comfort in the curves, the pot holes and road blocks, that force us to slow down and notice the textures of the path we tread.

Yet I'm glad that Elias does not yet understand the whole birthday concept because the streamers are not strung, no invitations have been sent, and the cake is not filling the kitchen with a warm vanilla scent.

Not even chocolate frosting can melt the edges of the memories of Elias's traumatic born.

Despite this--the resistance to celebrate the anniversary of his birth--we will celebrate Elias all day long. 

As we do every day.

We will lather him with kisses, repeat every silly sentence, applaud his successful movements and pick him up when he falls down.

We will rejoice in the miracle of his life. And let him lead, as he has from the beginning.

One supported step at a time.

Past Midinight Musings

The partner of one of the players on my team came into the locker room tonight after our game. "How'd we look?" someone asked her. "You looked good. You guys were on the ice a lot though." Meaning we fell down. And I felt like she must have been talking about me. You see I can never stay on my feet in hockey games because I am always skating on the edge of control. So after almost every shot, I fall down. If I run into someone, I fall down. I get up quickly but I fall down often.

Elias falls down a lot too. Maybe a hundred times a day. But he just gets up and keeps going. One of the types of Cerebral Palsy he has is called Ataxia and it affects balance, muscle planning, and coordination. In the back part of his brain he has a cyst or gray matter or dead cells or a more fancy medical term that I can't remember at 1:00 in the morning after playing two hockey games and drinking margaritas out of Dixie cups in the locker room to celebrate the birthday of a woman who moved to Alaska from Missouri for the adventure and never left like so many people you meet in Anchorage, the longer they live here the harder it is to leave.

(Ahem, I don't know anyone like that, Mom, I know what you're thinking: Maine, New Hampshire and Vermont are nice outdoorsy states too-- and they are but there is just something about Alaska, about seeing three moose on our run yesterday and we live smack dab in the biggest city in the state, about having over three feet of snow to play in which makes the dark nights light enough to see without a flashlight, about the fact that so many of us are from "outside" that we find common ground so quickly in our love for this great state and our regrets about being so far away from home, especially once we have children...)

(I apologize for the tangent but whenever I write about Elias's brain I find my own brain taking detours.)

And this cyst or gray matter or dead cells or fancy medical term is located where vision, balance and coordination stem from in most normal brains. An MRI revealed the mass as well as other abnormalities besides his enlarged ventricles from his level III bleed while in the NICU. His corpus collosum (sp?), the separation between his right and left hemispheres, is much smaller than normal and I still couldn't tell you exactly what this means because Elias has too many issues for me to become an expert on all of them and because no one can definitively predict Elias.

I get so nervous for reports but they are just numbers and words and if Elias has taught me anything he has taught me to suspend my need for outlines, to throw away the wrapping paper because there is no box he will fit into, not if he can crawl to an elevator or escalator and ride to somewhere unexpected.

Not if he can navigate this crazy world and teach his mother to let go of vanity, of norms, of expectations, of everything she thought she knew, she thought mattered, and remain open to the possibilities that arise from an abnormal brain and a body that falls down and gets up quickly again and again.

For to skate on the edge of control is to also skate on the edge of nothing. Of no boundaries, no surface, no outlines. And there is great freedom in that second edge.