“I’m lucky my body can do this. I’m lucky my body can do this. I’m lucky….”
My mantra on the the top half of the climb up Mt. Marathon, on the 4th of July, when race day coincided with a cold, that had me up coughing during the nights leading up to Independence Day, when I wanted to quit before I even reached the mountain, after the half-mile run up the road, with thousands of folks watching, struggling to breathe, with a 3,000 foot climb before me, I suffered up the first part of the ascent until I caught my internal complaints and shifted the words in my head from: “This sucks, why am I doing this” to “I’m lucky my body can do this. I’m lucky my body can do this. I’m lucky…”
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“Or maybe they recognized me,” Olive said, as she walked out of Saint Elias Brewing Company in Soldotna, her hood up and eyes wide.
“Maybe,” I replied with a smile.
This after our bill arrived with a note saying: Have a beautiful day from the employees at St Elias and a mystery table! $0.00.
When we walked into the establishment, an hour earlier, I noticed a family smile and nudge each other when Elias walked into the room, they looked liked they’d come from the beach, like us, coolers full of salmon, dipnets loaded, tired and sore and ready for a meal served with silverware.
They probably saw Elias standing in the water up to his knees, helping us hold the ten foot pole, as our five foot net stood mostly out of the sea at the mouth of the Kenai, or maybe Elias helped bonk one of their fish as he worked the shoreline, running to the nets dragged to the beach with a Sockeye salmon thrashing within, wooden banker raised and ready, people couldn't possibly say no to his enthusiasm, even with him often missing the head and bruising the meat of the body, once even clocking dear Reni in the forehead, leaving a welt on her beautiful face.
They recognize Elias from the beach, I thought. And when Nick showed me the note that replaced our tab I looked over to their now empty table, dishes not yet cleared. The waitress gave us a hint which confirmed my hunch and when I told Nick why I thought it was them, Olive replied: “Or maybe they recognized me.”
“Maybe.”
Just maybe they realized being the sister of a child with multiple disabilities comes with your own set of special needs. Your own challenges. Your own dirt path to follow.
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We return to Adam’s Camp, a family retreat in Girdwood for children on the Autism spectrum and their siblings—and thus their parents— with rafting, dogsledding, rock climbing, yoga, and a glacier cruise on the schedule. It is our third year and we know other families returning and we fall into an ease of conversation not found in the other world of typical families without diagnoses, delays, and the grief that comes with parenthood on the spectrum. We meet new families and bond around a campfire, making smore’s, and laughing about the absurdities of life in Alaska with Autism in all its various forms. The week goes too quickly, despite our exhaustion from late nights and early mornings and I wonder how to capture more moments where all is understood without the need to explain. Without pity. Without false praise.
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My parents arrive on the last day of camp and take Elias and Olive on a train ride from Anchorage to Seward, never sitting for more than five minutes as my kids lead them through all the train cars, walking past sleeping passengers, making endless rounds, Elias talking to whoever will listen.
I greet them at the station in Seward and we show my Mom and Dad our unfinished house and the way we live up here on the hill, camping full time, with a barren structure to protect us from rain.
No heat. No water. No electricity.
Not yet.
But the eagles call and the mountains shine in the evening sun and they see the potential, the beauty and the comfort yet to come.
My parents and I need to return to Anchorage the following day, on a Saturday afternoon, so I can participate in a reading for the journal Cirque and receive the Andy Hope Literary Award and when we load into the car Elias throws himself at our orange Honda, not wanting his grandparents to leave, even for a night, so soon after arriving.
Nick intervenes and gets hit by our boy before his arms are held behind his back in my husband’s stronger ones.
“Go,” Nick mouths through the window, and I put the car into reverse and leave them in the parking lot not wanting to go.
Wanting to go.
Later at Becky’s Art Gallery I sit between my parents in the audience as I listen to other readers and wait for my turn to share. My dad on my left, Mom on my right, I am the child grown old.
I read my story that won the award, a story about dipnetting and parenthood and in the back of the room, ready to bolt if needed, stand two sets of parents from Adam’s camp with one of Elias’s peers, a child turning into a young man on the spectrum, and I look towards my comrades in the trenches as I say:
“Just as I can’t claim there’s something special about me for parenting a child like Elias, a child with an injured brain and miles between stones. I parent Elias by following his needs, winging it, and I’m always wondering if I’m doing it right.
The strength comes from loving him, not from some innate goodness in my soul. I am not a chosen one, just randomly selected.”
The sun shines through the door, illuminating these families that live inside my ruptured and repaired heart. My words are theirs as well as my own and everyone present in the room seems to grow quiet with understanding.
We all carry weight-- both familiar and unknown.
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During our shortened dipnetting trip this year, only two nights instead of four, without our normal clan of families, I stood in the rough afternoon waves the day we arrived and caught nothing.
This may not be my year, I thought.
That night the wind blew so hard tents were lifted, chairs somersaulted across the dark sand, “I don't like the sound of the wind,” Olive said, as we lay in our sleeping bags and I had to agree, I felt chiseled, patience waning, raw.
The wind subsided the following day, still strong in the morning and calm by afternoon, the sun appeared, and salmon, one by one, found the net I held.
I remembered to thank the first one.
***********
And so went July—I wonder what the month of August holds...
you forgot to say more about the award! Don't be afraid to share since we are all friends here and relish your accomplishment. I remember that story but would love to see it again in case you want to do a "repeat post". Elias looks taller than your mom which as I recall, isn't too hard, but is he taller than your pops now too? Relieved to hear that you have your fish for the winter and jealous of that feeling of having caught your dinner. We don't do that much in Ohio!
Posted by: Fleming | 08/02/2017 at 05:55 AM
You just write so beautifully! As a fellow mom of a son with special needs, I so enjoy your posts.
Posted by: Toni | 08/02/2017 at 10:49 AM
Sorry for the late reply Fleming I've been away from the internet again. Elias is taller than my Mom but not my Dad yet. The award was a complete surprise. I knew my story was published in Cirque but didn't know it had been selected as one of five finalists of all the entries published that year nor that the son of the award namesake had chosen it for the award. I got the email on a day when I was questioning whether or not I was really a writer. It came with a hundred dollars and the opportunity to be recognized at the reading.
Toni, thank you , its an honor to connect with other parents like you.
Posted by: Christy | 08/17/2017 at 09:48 AM
Oh and i added links to both the wriite and video of my Arctic Entries dipnetting story that won the award for Cirque.
Posted by: Christy | 08/17/2017 at 09:54 AM