"I don't want a sticker," Elias has been known to say to the person at the front desk before he or she even offers him one.
He peels off name-tags before an event has even begun. Refuses to wear his glasses.
At his 13-year-old check up, he put his coat and shoes back on, crossed his arms, and pulled his Otis hat over his face when Dr. Tulip asked him to sit on the table.
If I can't see you maybe you will go away. Then I won't have to get a shot today.
He won on this front and we postponed the flu and HPV shots.
When the scheduler called to set up an EEG, she asked, "Does he have any special needs?"
"So you don't think he'll cooperate for the test?"
"Not without sedation," I said.
There's no way Elias would sit idly by as nurses and techs attached wires to his head, I thought.
Nick and I debated how early and how much to tell him about the procedure, not wanting to increase his anxiety, and opted, this time, to give him more notice instead of less.
Nick found a Youtube video where a girl his age has an EEG, or an electroencephalogram, a test that detects electrical activity in your brain using small, flat metal discs (electrodes) attached to your scalp. The video clearly explains all the parts and pieces. "It doesn't hurt," she says. "It feels like a funny hat."
Elias had no questions for us about the why's of the procedure, only when and where. Calendars and maps, that's my boy.
Why an EEG now? Twelve years since his last one showed no seizure activity? Because his teachers and assistants have been concerned over the last two years that he may be having sporadic Atonic or drop seizures, a short lapse of awareness and muscle tone followed by increased confusion and impaired motor control.
I haven't witnessed one, unless I'm seeing it all the time and have just incorporated this seizure activity into Elias's persona, a boy who often seems vacant for a spell, checked out, elsewhere, and who stumbles often.
But what if there is more going on in his damaged brain then I know? He never speaks of his body or the changes within.
"Elias does your head ever hurt?"
"Does your stomach?"
"Do you ever feel like things go dark for a moment?"
"Do you feel confused afterwards?'
So we schedule the test. With sedation.
On Tuesday morning, Elias and I arrive at the hospital at 7:00 am. We ride the D elevator to the third floor. Elias names the brand and series by the sound of the ding. We check into the Pediatric Intensive Care Unit and the nurse talks to Elias about the EEG.
"When will we be done?" Elias asks.
"Well that depends. It will be faster without the medicine if you think you can do it."
"I do," he says.
"I think he can do it," she says to me.
And I believe them.
Without sedation, we are freed to ride elevators until the EEG technician comes to the room. We ride the D, C, B, and A to floor five, to the basement, and to all the floors between, before we are called back.
Our Care Coordinator Grant arrives. My friend Bonnie from Child Life meets with Elias to explain even more about the EEG. The tech shows him the lotion and the wires and the discs. He lets her measure his head as he finds the Denver airport on his iPad to show Bonnie and Grant, who both grew up in Colorado.
"Are we done yet?" he asks before the EEG has even started, while the tech puts the last few probes on his head.
"Not yet Bud."
When the computer starts recording, the technician asks Elias to sit back and relax. "Just close your eyes and rest," she says.
He sits up. Asks me a question. Lies back. Squints his eye shut.
"Close your eyes softly so your forehead is relaxed," she says. He forces his eyes closed again. Opens them. Sits up.
"Soft like a baby."
He forces his eyes closed again, his forehead wrinkled. Eyes pop open. "Mom, what are we doing when this is done?"
This goes on and on, and though the tech wants him to rest, I am still amazed that he hasn't ripped the discs and tape off his head.
She asks him to blow out, continuous short bursts for three minutes straight. I stand by his bed, doing it with him, and if feels like a year before we can quit, but Elias keeps blowing.
He looks at the blinking lights when she asks him to, and eventually, after a lot of stretching and yawning and changing positions, his eyes close more gently, and his breath deepens, and he doesn't sleep, but he relaxes on the bed, with a head strapped with wires.
An hour and a half after the first probe touched his head, we are finished.
No sedation. No restraints.
Just a thirteen-year-old kid following directions and cooperating with the medical staff and his Mom.
When we check out, Elias leads Grant and I around the hospital to all the elevators, asking people who ride with us, "What floor?" Holding the door-open button for everyone to get on and off, telling us about the various features.
"That elevator has a sick ding," he says about the middle C elevator in a row of three.
"Good thing we're at a hospital."
With a group of nurses we all take turns guessing which of the three elevators will open at our floor. Elias charms the whole crew with his enthusiasm.
His grandparents meet us and we travel up and down as a group of five, making every ride a full one as passengers board, a crowd for Elias to engage, breaking the mold of elevator silence, of staring at the door, no eye contact, no friendly conversation.
"This one is a rocket!" Elias says. "Classic Otis leveling."
By the time we meet with the neurologist, Elias is sweating from racing up and down the hallways, from the A tower to the S tower and back again. From holding buttons with his strong thumb.
"The EEG looks really good," the doc says. "No seizure activities noted during the test. Perhaps Elias just needs to check out sometimes."
We haven't seen this particular doctor since Elias was five and he is surprised by his mobility, his strength. "He's really growing up well."
Yes, yes he is.
We talk about our move to Seward and when he asks Elias what he likes to do he says: "Ride elevators. And shovel snow."
"We spend a lot of time in the woods," I say.
And then doctor Smith says something that speaks to the small pocket of guilt I carry about leaving the city for the mountains, about ditching therapy offices to make trails in the woods.
"You know, often the kids I see with cerebral palsy who live in the bush are more mobile then the city kids with all their therapy options, in part because of the uneven ground and natural challenges of life in a village."
When Elias and I return to Seward, after a day of roaming hospital corridors, we take an evening walk on the beach where Olive recruits us both to play her and Dad's game of walking only on big rocks, seaweed and water.
As the sun slides behind the mountains, I walk behind my children, careful where I step, letting them lead me towards Resurrection Bay, towards the reflection of snow-capped mountains in tidal pools.