From the Mountaintop Archives

I don't know

My three year old son doesn't walk. This much I know. Whether he will I don't.

I don't know a lot of things.

On Saturday, my four year old friend Lila asked me, "Christy, where does electricity come from?'

Long pause. "I don't know Lila, good question. Where do you think it comes from?"

(Classic teacher strategy, return a question you don't know the answer to back to the asker. A little different that politicians who divert. "Electricity has kept this country free since.....)

"Light! It comes from light," she answered.

Light. What a  brilliant answer.

We all come from light.

In Anchorage, the sun won't set till 10:24 tonight. There is much light left.

My questions can hang their laundry, take a walk, and wait.

The lives of others

Moreena, from The Wait and the Wonder, hosted this month's edition of the Pediatric Grand Rounds,  a collection of blog posts about children's health written from a variety of perspectives. There's nothing quite like learning from the lives of others.

Nelba, submitted her first post since the loss of her son Loren. In it she writes:

I cannot say that I have accepted his death. It is going to be a long hard road. We had too much going for us to let go just yet.

And this makes the words of people who never knew him or never cared enough to get to know him much harder:
“It is better this way. He would have only suffered.”

Even: “ We prayed that he would die soon”….

We had the opportunity to speak at Loren’s funeral. Probably quite a few people squirmed in their seats when I said without mincing words that I find this unacceptable. And I’m hoping that his father and I were able to convey that Loren was not a poor little disabled boy with no future. We chose orange and cream and white flowers. White and cream for purity and orange for vibrant life. And I had to laugh this morning when yet another bunch of orange flowers arrived. It is as if even strangers sensed the LIFE there was… IS in him.

Though standing ovations do not generally occur at funerals, I want to give her one for her courage amidst her grief.

And a giant hug. And a bouquet of orange flowers.

And her son back.

Looking Back to Discharge Day

After counting the days in the hospital--91, 92, 93,-- like a prisoner making scratches on the wall, when the NICU staff told us we could leave the following morning I didn't feel ready to go.

What you mean, like, take him home? All by ourselves? Without a nurse and respiratory therapist to monitor his oxygen intake, his blood levels, his weight? Um, wait...

I can't program a VCR, or figure out how to work all our different remotes, or master anything mechanical or technical, so the idea of being responsible for an oxygen compressor, portable tank, nasal cannula, and apnea monitor terrified me. I wanted to leave but I wanted to bring a couple of nurses, RT's, and Docs with me.

Besides, the over-crowded, windowless, alarm-filled NICU had become our home.

We lived there. We became a family of three there. After standing vigil for the first seven weeks but leaving at night-- only to wake up every few hours to pump and call in--a room opened up so I could move in with Elias for the last five weeks. Between pumping, working on breast and bottle feeding, changing his tiny diapers, and doing kangaroo care whenever I could, I rarely left the hospital.

When I did, the world outside Providence's doors seemed surreal. People rushing about as if a tiny baby, my son, wasn't fighting to survive. As if the sun still rose and set. As if it mattered.

I didn't know how to talk to most of my friends whose lives continued when Elias kicked his feet through my cervix. But I could say anything to the men and women who scrubbed their hands and arms up to their elbows, for two minutes, on their way to work each day. I cried openly in front of them on numerous occasions without embarrassment or shame. I asked stupid questions. I repeated myself. I repeated what they told me. I repeatedly told Elias I loved him. I arrived in sweat pants with uncombed hair and my emotions on my face. No mask of civility. And the first time I laughed with staff as I stood outside Elias's isolette, I knew, for the first time since his premature birth, that he wasn't going to die. Not today anyways.

I began to relax. I grew comfortable with my routine of scrubbing, pumping, and participating in daily cares. I talked to the staff about my life outside of charting every gram gained. Julie and I talked about our shared interest in making necklaces with recovered beads. Debbie and I talked about soccer. I asked Dr. Avila about how his son, my former English student, was doing in school. Tamera and I talked about how, after a long dark winter, we both looked forward to the return of the sun.

As I sit here, three years later, sun-burned from our successful celebration of Elias's homecoming day, and remember the moment we learned we could bring our baby home, I do so with a tang of regret for the people we left behind. And for a time that was beyond time.

I certainly don't want to go back to my days of walking around Carr's with a lamb's head sticking out of my bra to give my scent to the son I couldn't hold. Or sobbing while pumping in the middle of the night. Or putting a little of my own breast milk in my coffee for luck or comfort or metaphor on the morning of Elias's brain surgery, like a witch brewing a much needed spell: Please survive... Please survive...Please survive.  Drinking, in the way of the Disciples, for life.

When you can't hold your first child you will do nonsensical things. And it won't matter because the world stops turning.

The stillness makes anything possible.

Time stops.

Until it starts again.

You mean its not a toy?

So after writing about "falling" and the not-so infamous "elbow" yesterday, and then FALLING of my road -bike and landing on none other than my left ELBOW, I'm wondering when in my last life did I write about Elias playing with knives. Yes, you heard me right, KNIVES.

We were on the deck. I turned away from Elias to pick up an orange Geranium. He found a steak knife by the grill. And not bad enough to do permanent damage, but, he cut his wrist. Not bad enough to do permanent damage. ( I remind myself: Not bad enough to do permanent damageNot bad enough to do permanent damageNot bad enough to do permanent damageNot bad enough to do permanent damageNot bad enough to do permanent damage...)

But.

His freakin' wrist!

Lengthwise too, not across.

The I-really-mean-it way of cutting your wrist.

How?

I can only guess that as he reached up on his tippy toes for the shiny object and pulled the treasure down towards him in his right hand, the serrated blade rubbed against his left wrist that held him upright.

Fire me will ya?

I mean, I am a good mother, a very good mother, write it down and it will come true, I am always responsible and capable and have eyes and ears all over my body, no even more, all over the house, the neighborhood, the city, the state, and its a BIG state, but why stop there? I have eyes and ears all over the world, why not?  I can prevent all crises, that's right, I'm Wonder Woman and Big Brother and the Messiah and the man in the moon. Yeah!

Snippets from Writing with Grandmas

“Boom… faw down…tilly walker.” Silly walker we say. Not poor balance the true cause of Elias’s frequent falls. “Did that silly walker fall down again?!”  Our backyard slopes and so whenever Elias tries to walk across the yard he often falls down hill. He usually rolls well and says, “OK… Yias OK.”

His head and face bear the signs of multiple tumbles, with bruises, bumps and scratches but rarely does this brave boy cry. “Yias OK.”

Elias is OK.

It seems I fall more deeply.

And I do not roll as well when I dwell on all he can’t do. I fall to a dark place where no one can find me. Not even me. I can’t see my hand before my face. Can’t decide which direction leads towards the light.

And I sit there until a small whisper of a voice reaches me. A voice that seems far away at first but connects to the small hands that pull on my legs to help his legs stand. 

“Up Mama Up…carry you.”

He looks at me with his big blue eyes and trusts that I will pick him up. 

He doesn’t know that he is doing the same for me.

Elias is not trapped in a deep abyss. Not stuck. He is out there playing, exploring his world, picking up dried leaves, and throwing them to the wind.

************

Written in my Wednesday morning writing group at the Anchorage Senior Center, an 8-minute free-write on the topic of “falling”.

I just need to say that if you ever have the opportunity to spend time with a group of elders please do—especially if you have a child with disabilities and like me are struggling to fully understand what this means. Or maybe its even more important for families with no “ability” issues—do they even exist?—to be reminded that we all age. We all inherit disabilities. And no amount of money, fame, love, work, exercise, or Botox will keep our bodies from growing weaker.

But oh, humor can sure carry us when our legs can’t. We laugh a lot on Wednesday mornings, often at ourselves, as we write about our lives and read our words aloud to each other.  And the perspective I learn from my elders is like a shot in the arm to combat anxiety and fear. I’ve said this before and I’ll say it again: They call me the teacher but they teach me more than I could ever possibly teach them.

We also wrote on the topic of  “body parts” yesterday and one woman in her seventies wrote about the attention her breasts received when she was 19 and if only her boss—who oogled them—could see her now as she tucks them into her belt. Another woman in her 80’s wrote about her prosthetic boob popping out of her bathing suit when she dove into the Hawaiian surf twenty years earlier.

I chose to spend my five minutes writing about a less celebrated body part:

"Oh, the neglected, forgotten, but oh so important elbow. Not nearly as shyly sexy as the wrist or ankle. Not as provocative as the breast or buttock. Not as taboo as well, you know, down there.

The pointy bendy mechanical elbow. Sometimes called the funny bone but not nearly as humorous as the nose, ears, or belly. Not a part that kids love to point to, not a part that men love to peep at, not a part that women try to accentuate by spending billions to color, trim, tuck, wax, shave, line, foliate, smooth, cut, reduce, or enlarge—look at the size of her elbows, ooh, baby, I gotta get me some of those.

No, the elbow laughs at the other tortured body parts from its anonymous position, quietly directing the arms to stretch and bend in order to write, bathe, caress, paint, cook, garden, and brush the ever-so-spoiled, always in the spotlight, queen’s tiara, king’s crown: hair."

(Random, I know.)

**********

Finally, this weekend, May 5th, we celebrate the third anniversary of Elias’s homecoming day with a backyard barbecue. Three years to the day that we finally—after 94 nights in the NICU—brought our baby home. And this day, unlike his ambivalent birthday, is all smiles.

Oh, one more thing--will this random post ever end?--for me at least: Schoools out for the summmmeeerrr!!!

Come on sing it with me, Alice Cooper style: "Schoools out for the summmeeerrr...."

(That's the only line I know.)

"Schoools out for the summmeeerrr...."

Cheers all!!

What is the Significance of May 1st?

I am so not in the know in blog-land--maybe b/c I can only tolerate a limited amount of time on the computer and I still type with two fingers--but this morning I happened to stumble upon the fact that today, May 1st, is blogging against disablism day.

What is disablism? It is the attitudes I inherited as an able-bodied person that can allow me to see Elias, my own son, as deficient. (Attitudes I continue to peel off, slowly, layer by layer.)

Disablism is the belief that ability equals worth.

Disablism is the fact that we have a cross-walk in our neighborhood that leads to a curb, with the only other crossing option of this busy street two flights of stairs to an overpass. Disablism is the fact that I didn't even notice this until Elias arrived to teach me about the need for a world with access for all.

A world that no longer denies equal opportunities to whole groups of people just because the box they fall into is different from ours, or yours, or theirs.

As Dan Bern sings: "If your going to put me in a box make sure its a big one...with lots of windows...and a door to walk through..."

...with wheel chair access, and a ramp and an elevator, with Braille buttons, and adaptive computer technology...

To read provocative thoughts from around the globe in honor of Blogging Against Disablism Day, visit Diary of a Goldfish. The organizer even categorized the entries into subtopics--such as parenting, education, media etc-- making it easy to navigate through subjects.

My only warning is you may still be reading by nightfall, with your heart wide open, allowing space and access for every last one.