Chapter 32

We were still making three trips to the SCCA in Seattle each week as we neared Day 70. This was both a comfort and royal pain in the butt, as it took up most of the day. On this particular trip, Andrew was receiving an immunoglobulin (IVIG) infusion to boost his immune system, and we were expecting to hear the results of his latest chimerism tests. Jon was back at work and Hannah in school. Everyone was back to a normal routine except Andrew and me.

I was mid-way through my commute when I heard a voice from the passenger seat. “Uh, mom?”

“What?”

“You know the shoe I have on?”

“Yeah.”

“Well, it’s a little roomy.”

“Like what? What do you mean?” I asked, impatient.

I glanced at the clock, calculating that we could make it in time if I managed to avoid every red light on Eastlake Avenue.

“I dunno,” he said, squirming in his seat.

“What’s wrong with the shoes?” I demanded, becoming more and more frustrated with his cryptic way of communicating.

“It seems something is missing.”

“Like what?”

“Those inserty things.”

“What?”

“And my socks.”

“You don’t have socks?”

“Well, I do. They’re at home. And my other shoe.”

I looked down into the passenger foot well. Sure enough, Andrew was only wearing a left shoe. The other foot was bare. I raked my fingers through my hair the way Jon did when he was exasperated with me. Was I this infuriating to him? I hoped not.

When we arrived, I knew they would never allow Andrew upstairs with bare feet. Leaving him alone in the car, I ran up to the gift shop and bought a pair of non-skid slipper socks with crimson and gold flowers on the top of each foot. Then I went up to the radiology lab on the second floor and hijacked some of those papery blue elastic footie cover-ups you find at the paint store.

With his makeshift shoes, Andrew and I carefully navigated the tightly packed parking garage. People emerged from their cars in all states of being to slowly make their way to the floors above. If you are unprepared for the reality of this secret world, it can be very overwhelming. Patients are in all stages of cancer treatment, bone marrow transplant preparation and recovery. The bulk of the population is bald and most are struggling to remain at an acceptable weight.

Perhaps the most disconcerting sight is the color of people’s skin. After so many visits to this isolated world, it was easy for me to guess at the condition of people’s bodies by looking into their faces. Some faces were grey—the color of ashes—some had a yellow hue, and others were as pale as a porcelain doll. Sometimes, I saw bright eyes shining out from drawn, angular faces, connecting with my own in a silent exchange of hope. Like so many others, Andrew was pale, bald, and weak, yet he possessed a burning sense of determination behind his eyes. He was fighting, finding his own way in this foreign world where we had landed.

As we were led to one of twenty-three infusion bays that day, I realized we had joined yet another tribe: The tribe of survivors. An incredible feeling of gratitude washed over me. I wanted to burst through the curtain of each bay, shake every patient’s hand, thank them for being brave and for bringing us hope simply by just being there.

Dr. Burroughs stopped by in the middle of Andrew’s infusion. “It’s a good day, Andrew! Your numbers keep trending up. It seems you and your sister are getting along well!” She smiled and handed me a stack of papers with his most recent chimerism numbers.

Andrew grunted, barely tearing his eyes from his iPad.

“She bugs me. Hannah. She makes me eat zucchini and won’t let me watch the Cooking Channel. She’s worse than Food Nazi here,” he said, jabbing a finger in my direction. Despite trying for an insult, a sheepish grin spread across his face.

Six hours later, we shuffled back down to the parking garage to head home. No one asked him about his shoes.

Day 100 came and went without much fanfare. Andrew continued to struggle with GVHD in his gut, but another slow taper of prednisone seemed to keep everything at a low simmer. There were days, and sometimes weeks, when I feared the worst, but like Dr. Burroughs had wisely counseled, we began to live for each day. And Day 115 was a good day.

“Andrew, would you please unload the dishwasher?” I asked, dropping two heavy grocery bags on the counter.

“You know I can’t touch dishes. Germs,” he said.

“Dirty dishes. These clean dishes have your name written all over them.”

“Not interested,” he said with a smirk.

“Well, I’m not either. That’s why you’re doing them,” I replied, throwing a clean dishtowel in his general direction.

Andrew made a half-baked attempt at unloading the dishwasher before scrambling out the door and running across the yard to the hen house.

Shortly after our ‘Hazmat’ appointment with Dr. Burroughs, Andrew had fashioned his own Hazmat suit from an old pair of coveralls, rubber kitchen gloves, motorcycle boots and a full facemask helmet, which he wore all spring. He was recently freed of it after promising to change his clothes and wash his hands immediately following contact with any of the chickens. Since then, he and Frightful had been inseparable.

While I finished unloading groceries, I watched Hannah approach Andrew. He was sitting in the coop with Frightful, seemingly oblivious to brewing storm clouds that had kicked up a chilly wind. Four new adolescent chicks wandered the perimeter, keeping a wary eye on the queen of the hen house.

“Hey birdy-bird. I want a job like this!” He pointed to his iPad, where Alton Brown was hosting a current episode of Cutthroat Kitchen. “I want to be a chef in a kitchen that is huuuge! One that has a deep fryer like the ones I showed you. You know I have mad knife skills.”

He pantomimed chopping motions on his lap, keeping his fingers straight to avoid contact with the imaginary blade. Frightful sat quietly, waiting for the rest of the story. Andrew absently patted her back. She clucked. A few feathers blew off and scattered in the wind. He shoved her inside his jacket.

“I don’t know why you insist on molting this time of year. Don’t you get cold?” he asked.

Andrew zipped his coat part way and leaned against the fence—two friends lounging in companionable silence.

Hannah and Sawyer joined him in the coop. “What are you two talking about?” she asked, chucking a tennis ball into the woods. Sawyer flew out of the coop, leaped over a glossy clump of salal, and was gone in an instant.

“That’s classified information,” Andrew said.

“Does Frightful know you want to be a chef?” she asked.

“Yep. She thinks it’s cool.”

Sawyer came back with his ball and a beard full of wet leaves. She threw the ball again, but this time he stayed, flopping down at her feet.

“Frightful missed you when you were in the hospital,” Hannah said, twirling a feather between her fingers.

Andrew squeezed the chicken’s beak and she let out a series of clucks in protest. “She talked to me. In my head,” he said.

“When?”

“When I was sick.”

Hannah stood there, pondering her brother’s words.

“She loves you, you know.”

“She’s my birdy-bird,” Andrew replied. He stood up and dusted off his pants before opening the door to the laying boxes. “Let’s check for eggs, Frightful.”

The rest of the chickens squeezed past his legs and scattered into the yard. Andrew put three eggs into the pocket of his silky basketball shorts and marched back in the kitchen.

“Got another green one!” he shouted above the vacuum cleaner, then hightailed outside again before I could call him back.

A minute later, I looked up to catch a glimpse of riotous red chemo-curls and a pair of hands pressing Frightful to the window. She looked like one of those Foster Farms chicken ads. The one where the plumped up ‘imposter’ chicken had smacked into a moving vehicle.

“Back-ACK!” I heard through the glass. Then there was a whole lot of chortling before the bird disappeared and a skinny boy took off across the lawn.

“Why does he keep bringing chickens in the house?” Hannah asked when I finished the vacuuming.

“I don’t know. Maybe he thinks they’re human?”

She rolled her eyes and mumbled something that sounded like, “That’s really dumb.”

I pretended I didn’t hear her.

* * *

Eight months later, our family squeezed into one long row of the auditorium where Andrew would graduate from high school. His entire high school education had been compressed into ten short months. He took a cooking class and American history. The other classes were a crash course in growing up.

Sitting on the aisle was Sue. Andrew had invited her as his guest of honor, and when she arrived, he handed her a new tissue paper drawing of Shadow.

“For you to keep,” he said, dropping it in her lap. “See? No more Hickman line. But he has a broken foot now. Jumped too high.” He gave her a goofy smile and skipped to the front of the room to sit with his class.

Jon put an arm around Hannah’s shoulders and reached for my hand. “I can’t believe we’re here,” he spoke in my direction.

I squeezed his hand and nodded, tears welling at the back of my eyes before the ceremony had even begun. Introductions were made, and then Andrew stepped up to the microphone with his kinky crazy-hair and an untucked shirt.

I looked to Jon in surprise. “Did you know about this?”

“Nope.”

Andrew began to read from a stack of notecards. “I owe my life to my sister, Hannah,” he said.

Grandma Connie reached for the Kleenex at the end of the aisle and passed it down.

“She donated her bone marrow to me when I was sick so I could get my power back. She made me eat zucchini when I got home from the hospital. Now I am better and I plan to be a chef someday.”

The audience clapped politely. Andrew waved his arm in a wide arc and pointed to the back of the room. “Lights! Camera! Action!”

A picture of Frightful popped onto the screen at the front of the auditorium. I stifled a giggle.

“I have a touch of autism,” he said to his audience.

I snorted as laughter and tears warred for control. Jon dug an elbow into my ribs and someone from the row behind us passed me a tissue.

Andrew turned to look at the screen, then jabbed a finger in the air, “Next!”

An elaborate PowerPoint chart displayed a variety of chickens with bullet point lists beneath each one. To the right was a sketch of a skinny boy in pants with spiky red hair and a cape. The title on the screen read: Why I Think Chickens Have Autism.

Jon and I sat in stunned silence as Andrew listed the ways he thought chickens were similar to people with autism.

“Chickens look at you with their beak,” he said, reading off a crinkled notecard. “They don’t look you in the eye because their eyes are on the sides of their head.” He gestured to the screen, where a giant picture of a chicken head loomed over the audience. “Chickens like to talk to themselves unless they are laying an egg, then they talk to everyone really loud. Buck-buck. Buck-ACKKK!”

A few snickers rippled through the room and I felt my face redden.

“They like to find quiet places to lay in the dirt where nobody will bother them,” he said, reading by rote the words his teacher had typed for him.

How had my son made these connections? I reached for Jon’s hand and squeezed, the heat in my face spreading to the rest of my body. I heard my mom rip a few Kleenex from the box and pass it back to Connie. The audience sat silently, enthralled.

“My chicken, Frightful, is most like me because she likes to be near other chickens, but nobody forces her to talk or play. She just likes to hang out.”

An unfamiliar picture flashed on the screen—a grainy shot of Andrew and Frightful on the porch, presumably deep in conversation. I wondered if his teacher took it when he visited our house earlier in the year.

“But most of all, chickens are smart, even if the world thinks their brain is too small to understand things.”

The snickers from moments before turned to sniffles as parents and friends of other autistic and special needs kids realized that my son had honed in on the truth. He was smart. He felt deeply, and he knew himself, perhaps more than most of us did.

The last photo appeared. “This is Frightful,” Andrew said. “She is my secret-keeper.”

I held my breath as I studied the photo he had chosen. It was my favorite. Taken when he was thirteen, while cradling Frightful in his arms, the photo showed a look of immense joy on his face. I remembered dressing him that day in a crisp white shirt and combing his hair back with Jon’s hair gel. I had been determined to get the perfect family photo of the four of us. But after two hours, with little success by our hired photographer, Andrew had run to the coop in search of Frightful. On the way to her car, the photographer took a few quick shots of my son and his bird. That photo is still my favorite today.

The screen went black and Andrew quietly joined his classmates in the front row. The audience breathed—an almost imperceptible pause. Then they stood to applaud the autistic boy who had somehow articulated the truth.