When I started writing online, over 11 years ago, from a computer tucked between respirators and heart monitors in the Providence NICU, I pressed those keys to form words to describe Elias's condition from day to day for my family and friends far from Alaska.
As days grew to months, I found myself retreating to that computer in the corner of the intensive care unit to describe my own feelings, the fear when he stopped breathing, the joy when he opened his eyes. I needed to write almost as much as I needed my son to gain weight, to learn how to suck, swallow, and breathe all at once.
Almost two-years later, when I switched from a private blog to a public one, I wrote for my family and friends, I wrote for myself, and I wrote for people I didn't know but who offered me a unique lens of understanding, support, and hope through their comments and emails. Before long I wrote for this community of followers who led me further along the writing road than I ever would have travelled alone.
So before I continue, I just want to thank my readers, whether you have been following our story for years or have just begun, your virtual presence in my life has been the unexpected bonus of taking my writing from a notebook to a screen, of pressing the publish button and sharing my stories with the world. It may be a small world, but it is one that helps me grow. And so when I take time away from writing, as I have this month, I begin to feel off-kilter, out of touch with myself and this community that feeds me, lost in a segment of time without sentences to bring me home.
And now here I am, with the alphabet patiently waiting beside me, anxious to perform, unsure how to choose the right letters to put the last few weeks into words.
At the opening parent orientation meeting for Adam's Camp, the founder of the camp and father of a young man with Cerebral Palsy spoke to us parents, all linked by autism, as we sat in a circle of chairs in the Girdwood community center.
"I like to think that the parents are at camp too," he said. He urged us to attend all the parent meetings and take time to connect with each other while our children went off to their therapeutic adventures. I resisted this idea, as I longed for more time for me and Nick, time to hike Alyeska and run the cross-country trails. When the kids' stayed with the other campers for their overnight, I imagined Nick and I out to dinner, just the two of us.
But then Bob starting to tell the story behind Adam's Camp. He told us how he and his wife longed for a child, and of the years of hoping this would be the month, the drug, the dose, and finally deciding to stop all the treatments and accept that biological parenthood wasn't their tree to climb-- but before they descended the limbs of longing for a child of their own, they tried one last double shot of fertility drugs, and for Valentines day Bob sat across from his wife at a dinner table, where she handed him a small box.
A baby's rattle.
He told us about the first ultrasound when not one but two and oh, wait, three heartbeats danced across the screen. An instant family of five, they thought.
"But the pregnancy didn't go well," Bob says, and his story begins to merge with mine. Bedrest. NICU. All those tiny babies in plastic boxes covered in tubes and all the eyes of parents widened to this medical world where worry slowly carves circular creases, like the small spirals of these lives we can't hold.
I sit across from this man I just met, wanting to hug him, wanting to pull him aside and say, "Yes, yes, I get it. I've been there too."
And then Doug, one of the founders of the Alaska chapter, speaks and he shares how lost he and his wife Margaret felt during those early years with a nonverbal son on the Autism spectrum. He alludes to the depression that nagged at their hearts and his honesty moves me and I want to stand beside him and Margaret and say, "Yes I know that dark hole, I know the shadows and the way the light feels so far out of reach, as if it only shines on families with picket fence lives and summer camp woes."
And yet Doug and Margaret go to summer camp, the original Adam's Camp in Colorado, the one Bob founded over twenty-five years ago as a way to bring different therapists and families together for a week instead of working in isolation.
(On that first ever week of camp Bob's son Adam, age five, took his first steps towards another girl with CP.)
And on their first night in Colorado, as their son paced the room, another mother, whose son spun in circles, approached them and Doug shares how that connection acted as the rope they needed to climb up towards the rising sun.
So when Doug asks for a count of hands of folks that want to have dinner together during the kids's sleepover, I eagerly raise mine. I want to connect with these parents whose lives mirror mine.
Later that night, we meet some of the families at the playground and I breathe easier than I normally do on an evening at the park, as Autism unites me with other parents instead of casting me in a corner all alone. I let go of the need to apologize for my son as he interrupts conversations and holds onto their hands, I see charmed smiles in response to my boy instead of awkward glances and pulling away.
Even later, when Nick meets two other camp Dad's at a bar for some much-needed guy time and I sit at the trailer feeling a little sorry for myself because it is the twelfth anniversary of our second wedding and I imagined spending this night with my husband, as much as I want him to connect with other fathers, I notice another camp Mom, Julie, light a fire outside her trailer and decide to bring my wine glass down there, teary eyes and all. She welcomes me without questions and our conversation easily travels to that place where hearts speak without judgement or pretense. Common experiences unite as she refills my glass and later Nick's as he joins the circle.
As the week goes on, I find myself looking foreward to the parent meetings and giving up alone time with Nick for the chance to connect with these people who live unexpected lives like ours. On the Parents' Night Out, after a dinner with the whole crew, a smaller group converges at Julie and Mike's trailer and we wind up sitting around a camp fire till 2:00 in the morning laughing about our lives in a way that only those who live them can.
I signed my children up for Adam's Camp, with the help of a mini-grant, in the hopes that Elias might make a friend and Olive would benefit from knowing other kids with siblings with Autism. I never realized how much I needed the camaraderie of sitting around a camp fire with other parents like me, who live in the same city, who I can see again at a playground or park and breathe a little easier in the solidarity of life with special needs.
Every morning of camp, when we dropped Elias and Olive off for their separate adventures, they barely said goodbye as they eagerly joined their group for dog-sledding, rafting, swimming, rock-climbing, and time away from Mom and Dad.
"I wish it was morning, " Olive said one evening, as I woke her up from a rare afternoon nap.
"So I could go back to camp."
As for me, I wish these treasured days in Girdwood got stuck on repeat, like a Groundhog's-day-week, and we could eternally exist in this unique Adam's Camp world where everyone gets it and there's no need to explain.
How unprecedented and worthy of celebration something as seemingly little as Elias turning to his sister, unprompted, and asking, "Olive, how was your day at camp today?"
"Good. How was yours?"
Can't get much better than that.