Tomorrow Elias turns thirteen.
Thirteen trips around the sun. Thirteen cakes with candles ablaze.
Thirteen years since I awoke after an emergency c-section during my 24th week of pregnancy to these words from a doctor: "He's alive but I can't tell you he's going to survive."
Elias survived and then some.
"I'm glad we moved to Seward," Elias told me last night, as I drove him to town to meet with his respite worker, a young man who doesn't mind shuttling Elias around to the various elevators at the library, hardware store, and hotels-- and who Elias loves hanging with whenever he can. Time away from Mom and Dad and with a cool older guy at that.
"Me too, Bud," I said. "Change can be hard at first, but it can also be good."
These words were as much for me, as for him, as I've been struggling with changes in our political landscape, alongside hormonal changes that come with puberty as I watch my boy grow into a young man.
How is it possible that the beginning of a mustache graces his upper lip?
Back in the NICU, he spent his first seven weeks on a respirator, and he underwent heart surgery with the potential of injuring his vocal chords--and I remember saying to a nurse, as we prepared to withdraw the breathing tube, "I just can't wait to hear his voice."
No cry at birth, no cry for hunger, no cry in the middle of the night, that baby goat newborn noise that draws parents out of slumber better than any mechanical alarm. I hadn't heard it yet.
The sound of his voice.
"Just wait," the nurse said, "before long he'll be a teenager and you'll be begging for him to be quiet."
And here he is, a day away from thirteen, full of questions about airports and facts about elevators, and the ever constant: "Mom, can you....
Mom, Mom, Mom....
Yes, that's me and there is something I can do.
From this day forward, I refuse to describe Elias's challenges as he sits beside me listening. How many times has he endured my answers to a professional's questions about his deficits? A catalogue of imperfections that echoes through his developing brain, writing a script for his potential. Self-fulfilling prophecy, unleashed, in the form of his parents describing his disabilities in order to get help. We paint the worst picture, highlighting everything he can't do, trying to prove he is still handicapped enough to deserve services.
Not able. No. He can't. No. Never. Not able. Can't. No.
Dissected, splintered, abilities labeled, boxed up, as the sky slowly shrinks over my son's head.
After Elias sat through last month's positive IEP meeting, as professionals spoke about his progress, I swear he walked with a little more pride in the days that followed.
Cleared his own plates from the table. Poured himself a cup of water from the sink.
Sure he's still an ass to his sister. But aren't most brothers at this age? Shouldn't I be celebrating the fact that he likes to stare at her till she whines? That he orders her to hang up her coat and put her boots away? That he ignore her pleas to play?
Yay, how perfectly normal!
Perfect. Normal. Not words you will find in Elias's medical files that could fill this small cabin with black and white incomprehensible words. So many heart-stopping words. Words that steal my breath. Words that turn my brain turn to mush.
Nothing but words.
An alphabet arranged to limit his scope, tucked away in manilla folders, in the file boxes of his brain.
But those same letters can be strung together to form sentences that expand rather than shrink the possibilities ahead. That punch holes through the low lying clouds to let a little light shine through.
I want to focus more on all that he can do.
Elias climbs the steep stairs in our cabin, with rungs so far apart its a plyo move just to ascend, all on his own, without me even worrying that he'll fall. He knows more state and country capitals that I can recall. He holds the door for people at the post office, despite them wanting to hold it for him. He laughs at himself when he stumbles or misses something in plain sight. He likes to help me make his bed and put the laundry away. Thinks going to the grocery store is an adventure. Tells me he loves me every night before bed.
Elias may not be the son I imagined, all those years ago, as I lay in bed with my hands on my belly chanting softly: "Please, stay in, stay up, stay in, please..."
But he is my son. And I am his Mom. And I vow to do better by my boy as he grows into a young man. To respect his dignity and boundaries and understanding and hold the professionals who serve him to these same standards. That's my gift to Elias, as he starts his teenage years, one I wish I had figured out earlier.
I just paused in this writing, to pour myself a cup of tea. The quote on my Good Earth teabag is by Reinhold Niebuhr: "Change is the essence of life. Surrender who you are for what you could become."
Change can be hard at first but it can also be good.
When I wake up tomorrow, I will be the mother of an accomplished teenage boy and-- though still unbeknownst to him-- a pretty rad seven-year-old girl.
And we will all keep on changing as we grow.