Following Elias

The Flight of the Waxwings

Olive lies with her head on my lap, pale and warm, she coughs every few seconds.

"Mom, my side hurts."

"Its from all your coughing, Sweetie."

Her eyes open and close as she resists sleep. Out the window, I watch a flock of Bohemian Waxwings take flight from our Mountain Ash tree. The small birds move through the air like one giant organism, a mass of black dots in the sky that change shape as they move out of sight.

I look down at my daughter, finally at rest, and realize I often forget she is not connected to me.

We are not one. 

It feels like it at times, like when I can't finish a conversation without, "Mom... Mommy!" When she climbs onto my side of the bed at night and takes up more space than Nick and I combined. When for five years now, beginning with her first colicky screams to her tantrums to her more recent mantra "I got an idea," her vocal desires constantly interrupt mine. It feels like we are but one organism breathing the same recycled air. And as much as I love her, I feel claustrophobic at times. Like all I want to do is stretch my limbs, my imagination, without bumping against the will of a child.

And yet I know this ultra-connected time won't last. It won't be long before she closes her door against me and I am the one calling her name, hoping she responds. Olive...Sweetie, talk to me...

Someday, sooner than I know, she will be the one longing for more space, eager to take flight.

I stroke Olive's hair,  similar in texture to mine but cut short above her ears, her choice. I watch her eyelashes flutter and wonder what images they conceal. I will never know my daughter's dreams.

I am reminded of Kahlil Gibran's words from The Prophet:

      Your children are not your children. 
      They are the sons and daughters of Life's longing for itself. 
      They come through you but not from you, 
      And though they are with you, yet they belong not to you. 
      

I look out the window again and wonder where the Waxwings will land next and how many individual birds, each one unique to its Bohemian self, create the fluid flock that makes patterns in the sky.

 

Q & A

A UAA education class, called Family and Community Partnerships, read my blog as homework and wrote me questions.

Here are a few of my answers:

 

Do you ever think Elias will be able to leave your home, or do you think he will have to live with you the rest of your life? 

Nothing like starting off with a challenging question. And a good one. I don't know... and not knowing puts me in a different realm from most parents who just expect their children to leave the nest.

(Often clinging to their soft fuzziness with each emerging feather.)

I imagine Elias will always need assistance, even as he develops more independence.  But will he always live with family?  A group home? A roommate?  I don't know. I imagine an assisted living arrangement of some kind that combines dignity and freedom with support. But I can't yet picture Elias at eighteen, or twenty-five, or thirty, to know the right answer for my boy.  

Here's the thing, I still often fear he won't wake up tomorrow, so I don't spend a whole lot of time worrying about 7 years from now.

Not yet. 

 

When you get time off because Elias is somewhere else, do you prefer to spend that time alone or with your other family?

My first choice is always with Nick. Time alone with my husband, hiking, biking, skiing, dancing to live music, working on projects at the house, leaning against our kitchen counters with a glass of wine sharing details of our days, getting under the sheets at the exact same time... 

I also enjoy social outings with friends and family without the constant worry that comes with going anywhere public with Elias. Its easy with Olive as she joins the gang of kids and we are free to socialize. Not so with our boy. I use to worry more about how other people received him, now I fear how he will react to other stimuli. So on those nights he's with grandparents or Ms. Julia, I often seek community.

And finally, I love time alone playing outdoors or hunting in thrift stores, tending my many gardens or sitting at my kitchen table where I write.

 

If I could ask Christy a question, I would ask her to compare the challenges and triumphs between raising Elias and her other child that doesn’t have a disability. I know she loves her children equally, however it would be interesting to know if she broke down in tears when her other child walked for the first time the same way Elias did.

Not knowing if Elias would ever walk, permanently etched his first footsteps into the inner heart of my memory. I will never forget that moment. Yes, I cried, and I laughed, and I can count on one hand the number of times I ever felt so elated.

Olive placed one foot in front of the other, so naturally, as if it were written before her, back when we still clocked her life in months. We celebrated, but not in the same way.

Olive's early development seemed to flow, without time to chronicle each milestone; whereas Elias took years to crawl, to inch his way over developmental boulders. 

You are right, I love my children equally, fiercely, and in very different ways. 

 

What helps you cope with things?

Writing, love, sports, beer, flowers,  snow, wine, sunsets, laughter, chocolate, writing, love, sports, beer...

 

I appreciate your child has an impressionable smile.  When was the first time your child smiled?

The first glimpse of a smile I remember is soon after he woke up from anesthesia, after brain surgery, as Nick and I leaned over his bed. I don't have a picture from that moment but here are a few early smiles:

(Taken in the NICU in April)

 (After two months home in July)

(By November of his first year.) 

 

Thank you for the thoughtful questions. Thank you, Alison, for inviting me to your classroom, for including my writing in your curriculum, and for caring, as you do, about us all.

Overheard

Elias walks out of his room with his pajamas on backwards to join Olive and I playing store in the romp room.

"Pretend he's your son and he works at the store too." Olive says.

"Ok son, thanks for showing up to work."

Elias smiles.

A pile of random objects--golf club, drum, baby blanket, darts, bouncy ball etc.-- sit next to me at the cash register, gathered by Olive for purchase.

Elias looks at the odd assortment, reaches for a popped globe beach ball and says, "Why do we have a deflated ball in our store?"

"I don't know but its for sale."

Elias laughs and says, "A deflated ball! That is the most ridiculous thing I ever heard." He looks for the valve and shoves the ball in my direction, "Mom, can you blow it up?"

"I'm not blowing it up, sorry pal, not tonight."

"Me neither," Olive says, "I am all out of hot air. Every night before I go to bed I have to blow up Superman.. 

...and then every morning I have to blow him again."

Cheers!

Perspective

Olive asks Elias, "Are you the only one in your class with canes?"

"Yeah," he replies, "But I'm not the only one who's eleven."

Happy Friday all!

Hard Like This

Sometimes all I can do is breathe, force more air into my lungs, hold it a second longer than normal,

exhale,

and do it again.

 

If I try to speak I will either cry or scream,

so I breathe.

 

I sit here at my kitchen table surrounded by the fixings for valentines, 

and the stick of maple syrup reminds me

its been a while

since I scrubbed.

 

Life is hard. 

 

Hard like the wood of this table passed down from Nick's family to ours 

and a son who won't look into my eyes. 

 

Hard like a day of responding to the hurt of children,

a sacred symphony that plays me awake at night. 

 

Hard like the collective cries across the globe: Help me, please!

 

So I breathe.

 

I walk the halls.

I move from soul to soul as we mingle in a dance

of resistance, empathy, and response.

 

I exhale and still...

 

...life is hard.

 

Hard like the 5:00 intercom call, my name beckoned,

when I thought I was done, to respond to my son. 

 

Hard like Elias shoving me in front of my students, boss, and peers. Hard like holding his hands in mine as he drags his feet on the floor, as he screams and tries to run back to the Camp Fire door.

 

Hard like this. 

 

Sometimes all I can do is breathe, force more air into my lungs, hold it a second longer than normal,

exhale,

and do it again.

Discovered Words

Just opened an old notebook of mine to a random page and found this:

Once upon a time,

the world spun more slowly,

and days lasted a week,

weeks lasted months,

months lasted years,

and everyone had more time to play

write

read

laugh

dream,

and because of this there were no such thing as wars or jails or children 

without love like a blanket to keep them warm.

This Boy Is Eleven

Happy Birthday Bud!