Chapter 28

Despite all the talk of food, we weren’t out of the woods yet, but we were past the harrowing decision-making phase and initial worries immediately following transplant. Now we were in the phase of watch and wait. Once a patient began to engraft, to ‘adopt’ the donor cells, there is risk for GVHD (graft versus host disease). This could take many forms and come on any time after transplant. Andrew was already showing signs of Hannah’s cells having small ‘skirmishes’ with the roving rash, but it all seemed quite benign as of yet. So I hung on to my lifeboat ‘hope’, just as I had been doing for ten years.

But then my lifeboat started taking on water. In the beginning it was subtle, unrecognizable. I was tired, irritable, and my body hurt all over. My hair hurt when I wrestled with my daily ponytail, and I watched, unattached, as strands of hair fell out with the twisted rubber band. I wondered if I would go bald, too.

People came to visit and to relieve me for a few hours at a time. I smiled and thanked them, but there was nowhere for me to go. Even when I could escape, the smiling hippo in the elevator taunted me. “You’ll be back soon enough,” it seemed to tease.

My mom visited one afternoon, bringing her usual stack of fashion magazines and a treat from Starbucks. We sat for a few minutes as she sized me up carefully. I couldn’t hide my sense of desperation.

Always the optimist, she put a smile on her face and began rummaging through her purse. “Here,” she said, handing me her credit card. “Why don’t you walk down to University Village? Buy yourself something new and have some lunch. There’s a new Italian restaurant next to the Eddie Bauer I think you’ll like.”

I knew it was a ploy to get me out of the room, to distract me, to force me to put a smile on my face. She was painfully uncomfortable when anyone was less than perfectly happy—especially one of her daughters.

Looking down at my clothing ensemble, I agreed that my adopted hospital uniform of REI cotton drawstring pants and fleece pullover was becoming offensive. I honestly didn’t remember the last time I had washed my clothes. And it was true; I could use a hot meal. The plastic boxed snacks at Starbucks had become unpalatable, so I usually resorted to an apple slathered with the peanut butter I had stashed under my bed.

Bundled in my down puffy coat and scarf, I gulped in the crisp breeze coming up from Lake Washington as I walked to the outdoor shopping mall. It was pain relief in the form of air. First stop: Food. The food was hot, but I couldn’t taste it. It didn’t matter, though: I could feel the heat in my belly, and that was enough. Armed with my mom’s credit card, I wandered the mall, peering into every shop window and ducking into my favorite stores when I thought there might be something interesting. Everything I saw looked like the tasteless food that was rumbling around in my stomach.

Two hours later, I walked back to the room. “I couldn’t find anything,” I said, handing my mom her credit card.

She looked speechless. “Are you sure? I saw tons of stuff down there this morning.”

I plastered a smile on my face. “I did have a nice lunch, though.”

She looked mollified, but I could tell she was worried. “I’m fine. I’m just really tired,” I smiled, trying to convince both of us it was true.

Andrew began channel surfing the moment my mom left. “Why is there always so much noise?” he asked, settling on a show called Restaurant Impossible.

“What do you mean?”

“Someone is making noise next door. I hear it when you’re sleeping,” he said.

Amelia had gone home two weeks before and was replaced by a girl I still hadn’t met. Before leaving, Amelia’s mother found me in the hall. Handing me one of her knit scarves, she said, “To keep your head on straight until you get home, honey.” Then she took my face in her hands and planted a kiss on my cheek before scooting out the door after Amelia. I never knew her name.

Our new neighbor shared the wall that the head of my bed was tucked into. Sometimes I heard nurses coming and going while they adjusted the noisy machines, but other than that, they remained silent behind closed doors.

“What is it you hear?” I asked Andrew a little later, not sure I really wanted to know.

“Crying,” he replied.

The rooms were soundproof for the most part, but I guess I’d been sensing something, too. Shaking off an odd feeling, I left Andrew and went in search of food downstairs. Coming back up only a short time later, I came upon the scene every parent desperately avoids: “Come on, Dad, let’s go,” pleaded a tear-stained son.

His sobbing father was being dragged out of the room by his armpits, supported by his eldest son and one of the male nurses. Moments later, the room exploded. I ducked into my room, wishing I could unhear the grief that was ringing in my ears. Andrew was still watching TV, completely unaware. With no place to go, I pulled the shades, collapsed facedown on my cot, and begged God for mercy: Oh God, please don’t let this happen to us! I thought I could handle it. I thought I had enough faith, but maybe I don’t because I want to curl up and die. Please, please, please save my son. I’m not strong enough to bear this. Where are you? Do not leave me. Are you here?

The words tumbled from me as I cried for the family next door, but mostly, I cried for myself, because truthfully, I knew it could have been me or Jon pulled out of the room by our armpits. When that reality gripped me, I wasn’t sure I could let go of the fear that it may happen to us. Not really. I was as terrified as every other person I saw in that building each day. I knew that in order to survive, the mothers needed to knit, to bind and knot, twist and tangle. I knew the fathers kept their thoughts miles away while they sat in the hallway, feigning work on their laptops. I knew the visitors with the Mylar balloons, stuffed animals, and raucous laughter were all scared. I knew the code: Stay behind the smiling mask. I went through the rest of my day numb, refusing to accept that I had felt a child die. Over the course of the day, boxes and rolling bins were brought to the room next door and loaded with blankets, stuffed animals, and gifts—all artifacts one collects while living in a hospital.

Inside our little cocoon, business went on as usual. Our nurses gave no indication of what was going on only feet away from me. I said nothing.

That evening when I came back from dinner, the shades were open while a cleaning crew aired and sanitized the room. “How is the family from next door?” I dared to ask our nurse the next morning. Her look told me clearly she wasn’t going to tell me anything.

“I was just wondering. I’ve been praying for them,” I said.

She glanced up from the IV tubing she was changing, and smiled. “That’s really nice of you.”

Venturing into the hall, I saw that a young family with a two-year-old toddler had moved in. The toddler was on the bed playing with building blocks, the shades pulled up and the door open into the hallway, where a nurse was bringing in a breakfast tray. This family, of course, had no clue what happened in that room less than twenty-four hours ago.

The following, day Jon and I met with Dr. Burroughs. We had arrived at Day 28, and there were clear signs of engraftment.

“He’s scheduled for blood work and a bone marrow aspirate this afternoon. We’ll be checking for any remaining Trisomy 8 cells, as well as his chimerisms—that number will tell us what percentage of cells are his sister’s,” she said.

Uncharacteristically, Jon was scribbling notes. Usually, he sat in the chair, attentive, but left the note taking to me. I took the opportunity to share with her Andrew’s continued requests for a Big Mac. “I didn’t think a hamburger was such a good idea. But he does seem to be getting hungry.”

Dr. Burroughs thought for a moment. “A Big Mac? That’s a first! Let’s begin to lower the calories in his TPN and start with something a little more basic like applesauce, some broth and maybe crackers if he’ll tolerate it. I’ll have the nutritionist visit you this afternoon.”

Jon and I exchanged a hopeful look. This was tangible progress.

“I suspect he has some graft versus host disease (GVHD), so I am scheduling a biopsy of his gut,” she said. “It’s important to catch it right away if there’s something brewing in there.”

Jon appeared nonplussed. I slumped in my chair as the warm fuzzy feeling I experienced just moments before was stripped away. Holy crap! When would it be okay, really okay, without the threat of decline? I kicked Jon under the table, stomping on the top of his foot, wanting him to feel as bad as I felt. He took notes.

At home that night, Jon found me weeping into my keyboard, a half written blog on the screen. He was instantly irritated. “Why do you do this to yourself?” he asked.

“Do what?”

“Make yourself miserable.”

When I wouldn’t meet his eyes, he walked over to my chair, spinning it around on its swivel. “This has to stop. We are fine. Andrew is fine, at least as fine as he ever will be. Can’t you just relax? Today is a good day. This is who we are, what our family is.” Anger burned its way under his shirt collar, leaving his cheeks streaked with red.

“But I am so done. I just want it to be over,” I heard myself whine.

Jon brought his face inches from mine. “You know what? He could drop dead tomorrow. If he does, I will know we did everything we could to give him a good life. We have the best medical team in the country and they have checked him up and down, and God knows, inside and out. There’s nothing more they can do.”

He stared me down while I met his eyes, defiant. I wanted there to be something else to do, something that would make him never suffer again. I glared back at him, the worst bitch-glare I could muster.

This time he shouted: “So if someday he doesn’t wake up, I will be okay. I will go on with my life. What about you?!”

My vision narrowed to see only the flaming end of his pointer finger, an accusatory gesture calling me to action. Would I be okay? I didn’t know. Sometimes I really believed I would. But then, the day before, when the reality of death struck me in the face, I felt myself crumble inside. Having said his piece, Jon left the room. I knew he would be fine. But I wasn’t. Not yet.

I spent the next day at the hospital, still furious with Jon. He showed up early, after lunch, to relieve me. “Go home and rest. I’ll stay here for the night,” he said.

He didn’t have to ask me twice. I arrived home forty-five minutes later to two slobbery dogs and an absent cat. Hannah was still at school, the house blissfully silent. I collapsed onto the couch and felt my tense body argue with the soft cushions at my back. Panic began pushing its way through my limbs, winding its way through my gut and landing in my heart with its tight fist. I had experienced a panic attack when I was in college and I hadn’t forgotten that horrible feeling. Lacking the energy to get off the sofa, I looked out at the grey sky with an anger I’d never experienced before, wondering how God could have allowed this to happen, to us, to the little girl in the room next door.

Finn circled my feet, finally laying his body against the length of the sofa. Sawyer, the smaller of our two dogs, came over to me, whimpered, and jumped up. His hot tongue licked my hands while he squirmed around, finally settling his front end on my chest. But the animals couldn’t stop what I knew was coming. The feeling of panic increased until my heart began pounding in my ears, my muscles tightened and my hands and feet began to tingle. That’s when I fetched my phone and dialed a familiar number.

An hour later, I was in Leah’s office, face down, swimming in a pool of sticky snot. I felt her gazing at me, her signature cup of tea cradled in her hands.

“Do you want to tell me what happened?” She reached over to touch my slumped shoulder and I felt my body crumble again.

“I have no idea. I thought I was fine.” I lifted my head to find a box of Kleenex in front of me. “Sometimes I’m swimming in grief, sometimes I can ignore it, although most days it hunts me, crawls into my head, and takes me out.”

I told her about my fight with Jon, the girl next door, how my hair was falling out, and that food tasted like dirt. I told her I couldn’t feel things, and that I forgot what people were asking me moments after they spoke. I loved Hannah with all my heart, but I was afraid I was a terrible mother. I just wanted to be alone. I was afraid.

“Do you think I could be sick, too?” I asked.

“Your heart is broken, dear, but that rarely kills anyone,” she said, knowing where my irrational thoughts were taking me.

My foundation had been rocked. I wasn’t sure what I believed anymore. All the things taught in Sunday school were meant to placate us, make us stop asking the hard questions. Where was this kind, caring, merciful God with the white flowing robe? Certainly not here! He didn’t exist.

“I feel so alone!” I wailed.

Leah leaned back in her chair and blew on her tea. That pissed me off even more.

“Well, aren’t you going to say something?!”

“It seems like you have more to say,” she said.

I wiped at the table with a wet Kleenex, kicked off my shoes and folded my arms across my chest. I would give her the silent treatment, too.

After an excruciating minute where I squirmed in my chair and let my gaze scan anywhere in the room but where she was sitting, she said, “I’d like you to close your eyes.”

When I questioned her, she said we were going to practice being still.

“With your eyes closed, you can see and hear the Divine at work,” Leah said. “After all, Andrew’s doctors are doing just that, aren’t they?”

“What do you mean?”

“Well, they are trusting in a process that’s still a mystery. They put their faith in the ability of new foreign cells to find their way beyond the bloodstream, enter through bones, and into the marrow. It’s quite a miracle.”

I thought about it for a while. “Hmmph,” I grunted.

“You are stronger than you know. Don’t forget that.”

Leah asked me to go to my lake. “Pick up your pastels, paint a new picture of it behind your eyes.”

I relaxed into the chair, letting out a deep strangled breath.

“Good. Now walk into it.”

After resisting, I closed my eyes and let the feeling take me away. I found I could bear the pain when I allowed the water to pour over me like warm liquid, filling me to overflowing. I saw myself as a great artist, blending color to create a lake that possessed all color, but appeared as clear as a diamond. My lake shimmered with crystalline light. I discovered that the wretched feelings that threatened to drown me over and over again were strangely gone.

“Who is the water?” Leah asked as I described my journey in the lake.

The answer popped out of my mouth without thinking: “Christ.”

“What does the water do?”

“Feeds the plants and trees and…” My mind was grasping at something, but I couldn’t quite form it into words. I am the living water, Christ said. His disciples had looked at him like he was off his rocker. A little cracked.

“Jesus isn’t flat,” I said softly.

Leah remained still. The faint sound of her breathing told me she was there, waiting.

“But this is not how it was taught in Sunday school. In Sunday school, the Jesus character had glamorous hair, a flowing robe, and stylish sandals, and He most certainly stayed on the felt board where the teacher put him,” I said, still searching for the truth.

“The Divine is too big to be put in a box and tied with a pretty bow,” Leah said.

I almost choked. Had I told her about my God-box?

In that moment, everything I thought to be true or real or normal or right was stripped away, leaving my soul cracked wide open. For eighteen years, I had been living on a knife’s edge, obsessed, because I couldn’t fix my son. In the end, it was not about the fix, the healing, or even the cure; it was about me letting go of control and my belief that if my external world was orderly and neat, then my internal world would somehow match.

“But this is not how I thought life would be,” I said, my voice barely above a whisper.

“That’s why we need grace,” Leah said. “Everyone suffers hardship or tragedy. But if you can look outside yourself, see that the world is good—even the raw and ugly parts—then you will truly live.”

I fingered the silver bracelet on my wrist. Without looking, I knew what it said: Light of the World. Carol’s message to me during our lunch came to mind: “When you hand over control, when you trust in this life, in God, then you will find peace.”

“What are you thinking?” Leah asked me.

“I’m thinking it’s time to redefine myself, and God, and be okay with it.” I knew I couldn’t save my son or control this world and keep him safe.

When I arrived home, there was a note on the counter from Hannah: “Gone to Grandma Connie’s house. See you in the morning.” Grateful for the respite, I walked through the house, flicking off lights one by one, creating a cocoon of blackness. I stripped off my grimy clothes, leaving them in a puddle on the kitchen floor. Wrapping myself in a blanket, I stepped through the front door and folded myself into Frightful’s wicker chair. I imagined the hen in my lap, nestled between my knees.

“Who are you?” I asked the imaginary bird.

An impossible thought flickered at the back of my mind.

“You know Andrew’s heart,” I said.

And he trusts you with his soul, I thought, remembering the tiny mottled chick that opened up his world with a single peep. It seemed uncanny that she had come into our lives right when Andrew needed a voice. It was no coincidence. Of that, I was sure.

When I finally dragged myself upstairs to take a bath, I dumped an entire box of Epsom salt into the tub, then turned to study my naked body in the mirror. My skin was dull and dry, but my eyes frightened me. They were hollow, filled with savage grief. There was no room for any other emotion, the crinkle of a smile, or even the grimace of pain. They just were there, staring back at me. Turning sideways, I noted my belly was no longer flat and toned, and my butt seemed to have taken on the shape of a metal foldout chair. It depressed me even more.

Once I eased myself into the warm water, my body came alive. For the first time in months, I could feel something. For one precious hour, I pretended I wasn’t me. I was an artist living in Provence, going to market in search of food and supplies to create beautiful things. I was a writer, living in exotic locations, having adventures that would certainly weave their way into my books. I was fearless, confident, wild. I embodied all the names I had ever been known by, and at the same time, was defined by none of them.

When the water cooled, I curled my knees to my chest, allowing myself to submerge completely. From the bottom of the tub, I opened my eyes to a world that was shimmering, moving, and alive, like the lake I painted in Leah’s office. My silent and unseen tears mixed with the salts in the water, erasing the pain in my body, and I knew that somehow, in the small, dim comfort of Leah’s office, I had been set free.