Chapter 11

Jon peeled into the circular drive, the tires of his SUV chirping to a halt. For a frozen moment, I sat in the passenger seat, staring through the rain-splattered windshield—a terrifying thought pushing at the back of my mind. While Jon flung open his door and his shoes crisscrossed pavement, I watched water gush from overflowing gutters. The light in the red and white sign flickered like a firefly I had once seen on a hot summer night. Curious, I wondered why they hadn’t fixed it.

There was no sound. Then there was: a roaring in my ears, a heartbeat thudding through veins…the sound of fear. My arms and legs moved without allowing time for my brain to catch up. I was out of the car, my hands reaching through the door, dragging my sixteen-year-old son from the back seat. He was taller than me by six inches, but somehow, during the time of no sound, I had developed superhuman powers. My arms easily lifted his skeletal frame, cradling him against my chest. Then I turned and walked straight through the double doors of the Emergency Room.

“My son is dying,” I said in a voice I barely recognized.

The woman behind the desk had a paper butterfly pinned to her shirt. I stared at her. She stared back, a polite smile curving at the edges of her mouth. “We’ll get him all fixed up. Why don’t you take a seat?”

Puzzled, I stared at her lips, thin, painted pink to match the butterfly fluttering about her neck. She spoke again, this time her words a slap across my face. “Take a seat, ma’am. We’ll be with you shortly.”

Take a seat? Was she kidding?!! At five foot ten, Andrew weighed barely 100 pounds and hadn’t been able to eat in nearly two weeks. No matter how much Tylenol and Advil we administered, his 105-degree fever rarely decreased. That night he began vomiting blood. She was crazy if she thought I was going to take a seat.

Consumed with rage, I spun around, scanning the waiting room filled with anxious parents and miserable kids. Ten sets of tired and weary eyes gazed back at me, challenging me to sit down. I was not going to sit. I would stand there and stare them all down with laser-vision if I had to, starting with the woman behind the desk, who was now speaking into the phone.

I adjusted Andrew in my arms, preparing to wait her out. He lay limp, his head turtled into the neck of his sweatshirt. I rocked from side to side, singing, “You are my goofball, my only goofball…”

The woman’s anxious gaze kept flitting between me and something on her desk as she continued her conversation on the phone. A moment later, the double doors yawned open, spitting out a round woman in dinosaur scrubs pushing a wheelchair. She reached out to take Andrew from my arms and the room began to roar—a deep, guttural roar that made the rage twist in my belly.

“You make me happy when skies are grey…” I sobbed while squeezing Andrew hard against my chest just to hear something, anything that would make me believe he would be okay.

“You’re a terrible singer,” he croaked.

I continued to sing while Dinosaur Lady peeled Andrew from my grip and set him in the chair. A name-tag was clipped to her shirt—a blue logo of a whale within a whale—with her name below: Martha Reed. Martha grasped me by the arm and looked me directly in the eye. “We’ll take good care of him. I promise.”

They took off through the double doors, the mouth of the giant whale consuming my heart. My arms were empty, my superpowers vanished, my body turned to stone. “Please don’t take my sunshine away,” I sang to no one in particular.

I stood frozen in the doorway, allowing my mind to replay the day: Andrew’s rising fever, the untreatable pain. Nausea, vomiting, not even an ice cube to the lips for comfort. While Sue sat with Andrew, I poured over my files of notes and diaries I had kept since Andrew entered grade school. I sorted and rearranged each piece of information in an attempt to get a glimpse of the whole picture. It was a puzzle with no borders. Defeated, I’d swiped at my dinner plate, sending it off the edge of the counter in a shower of half eaten spaghetti and soggy bits of salad. I’d returned to glowering at the stack of paperwork again, willing some pattern to reveal itself.

Still churning the day’s events over in my mind, I finally walked down the hall of Seattle Children’s Hospital, my feet guided by the familiar orange and red salmon etched into the linoleum floor, urging me deeper and deeper into the belly of the whale. Harried voices led me to a large exam room, lights blazed in one corner where an orderly was setting up a tray. I took note of the bed in the center, my son’s frail body occupying barely half the space. Someone washed their hands with disinfectant soap, the odor analogous with the countless doctors we had seen over the years who tried their best, but ultimately had no idea how to help. Even Dr. Torgerson felt like a faraway dream, unreachable. We hadn’t seen him since we joined the rheumatology team three years before.

From the doorway, I watched as a young doctor hovered over the bed, barking orders at a lone nurse. An IV was inserted, a saline bag hung.

In contrast to Andrew’s desiccated body and swollen red cheeks, this man was fresh-faced with a country club haircut and a stylish three-day scruff. Sperry boat shoes poked out beneath cuffed khaki’s. No socks. He looked more like a deck hand at the Shilshole Bay Marina than an emergency room doctor at one of the finest research institutions in the country. I hated him instantly.

He began pebbling my son with questions: How do you feel? Where does it hurt? How long have you been sick? You look a little thin. When did you last eat?

Andrew just lay silent.

“Fever, pain, vomiting, ulcers in his mouth throat and gut,” I snarled, like a mantra I had come to know month after month of this recurring hell. Don’t these people keep records?

I walked over to the bed, grabbed one of Andrew’s bony hands and squeezed. In his own version of sign language of which I had become the translator, Andrew lifted his other hand, stabbing a forefinger into the area below his belly button in the same way he’d shown Frightful those many years ago.

“His belly pain is unbearable,” I said.

“Where exactly?”

“In the middle. It’s always the same.”

Andrew sliced two fingers across his belly.

“It feels like knives are cutting him open.”

The much-too-young doctor on call sat down next to the bed and pulled out a clipboard and pen.

“I know it can feel scary to be in an emergency room, but I’m sure he just has a bad case of the flu. There are lots of viruses going around this spring.”

Oh good God! You have no idea! How could he say such a thing? My vision narrowed and, for an instant, I felt I could have murdered the doctor. He had no idea where we had been, how weighty our story had become, what Andrew had endured for the past ten years. Rage bubbled up through my own belly, leaving me with an urge to slice him open with the phantom knives that cut across my son’s belly. Frightful understood more about Andrew and his condition than this marina-coiffed doctor ever would.

A nurse sauntered into the room, handing the doctor a thick file of notes with Andrew’s name printed on the glossy yellow tab. While he carefully flipped through each page, I glared at his throat, the crease of skin, a recent sunburn, the Adam’s apple protruding out a little too far. As we all stood there silently, I watched him passive-aggressively read my son’s medical tome while my boy lay suffering between us. Angry tears welled up, spilling down my face and splatting onto the floor, causing the colorful linoleum fish to swim in front of my eyes.

Doctor No Socks started the clinical questions. I held up my hand, palm facing out, as a signal for mercy. “We were in here a few days ago, so why don’t you just check the chart.”

Despite regaining an outer sense of control, I started to shake from somewhere deep inside—an uncontrollable shivering that took over my entire body, forcing me to clench my jaw to keep my teeth from chattering. Groping for the wall, I guided myself to the floor, squeezing my eyes shut and clamping my hands over my ears to block out the noise—just like Andrew does. It helped. As I sat on the floor in the emergency room for what felt like the hundredth time, my world cracked open.

“Something is happening. It’s different this time.”

My mind flashed on Frightful throwing herself against the window while letting out an unbearable screech. She’d known it was different this time, too. I felt the young doctor’s eyes boring a hole in the side of my head. I heard, or rather felt, the groan of his chair, the catch of his breath, as if he was going to say something but then thought better of it. I cradled my head in my hands, wishing my world was anything but fevers, pain, emergency rooms, and an autistic son who communicated with a chicken named Frightful more eloquently than he ever had with any human. Tonight, I was terrified. I needed Doctor No Socks to understand what I knew in my gut: Something we couldn’t see was killing my son.

A scuffling in the hallway told me Jon was back from the parking garage. He was on the phone, his words drifting in through the open door. “Yes. We’ll be here a while. No. I don’t know. Please pick up Hannah and take her home with you.”

With my eyes still closed, I let out a long, slow exhale, realizing I had forgotten to breathe. I pictured Jon’s mother Connie, rushing to rescue Hannah from the monsters that lurked in the shadows of our empty home. Thank you, I breathed—my silent offering of gratitude to the only person who could comfort our daughter on nights like these.

Jon entered the room, nodded to the doctor, then crouched low to meet my eyes. He took my face in his hands and spoke the same words I’d heard so many times before: We will get through this. I nodded in a crazy way that meant I didn’t really believe it but hoped to God it was true. Then I fled the room and bolted down the hallway, back through the gaping maw of the whale, and out into the rain.