Chapter 13

With Andrew in the hospital for an undetermined amount of time, we became hospital dwellers. We were surrounded by people twenty-four hours a day, yet we felt completely alone. Andrew was now a part of the Complex Care Team—a group of freaky patients with unusual and unexplainable ailments. We were stuffed into rooms with others like us, children who had no diagnosis, people from the land of misfit toys.

Nobody really wanted us, but we were hard to ignore. We tried to ignore one another, but a flimsy curtain was hardly enough of a barrier to escape from another’s pain. The fact is, hospital dwellers don’t like to share. We don’t want to look at you, hear you, or see you. We don’t want your pain to somehow attach itself to us, because our own burdens are already impossible to carry.

The day Andrew was admitted for the last time was the same day my design business came to an abrupt halt. It was the day I lost a fraction of myself, the piece that was an artist. Twenty years of building a stable design clientele, and now I had to call my clients to tell them I couldn’t finish their jobs. Instead of designing or sewing or working on remodeling projects, I spent my days at the hospital, alternating with Jon, who spent most of the nights. We both saw little of Hannah. It was a lonely life.

As hospital dwellers, we understood we were not to ask others about their child, or why they were there. But when a mother in pajamas with bleary eyes sat next to me in Starbucks in the lobby, I couldn’t help but meet her eyes, and I knew she wanted to share her story. We all wanted to share our story. We somehow hoped that when someone else witnessed our abyss, our loneliness would vanish, if only for a brief moment, and we’d feel like we could survive another day, and then possibly another. That day, I sat and listened to a mother describe her love for her daughter who had been battling Leukemia for months. I listened more to her heart than her words, and over the course of an hour, I could see relief tugging at her face, the slight shifting of her shoulders as they relaxed. As we parted, she reached for my hand, thanking me with a genuine smile.

“No, I should be thanking you,” I said. “Today, I needed you to tell me about your beautiful daughter. You brought me hope this morning.” And I meant it.

That night, Jon stayed home with Hannah, and I took the night shift. I had the misfortune to cross our roommate’s surly mother when I asked if she would mind turning off the TV at three o’clock in the morning.

“NO! I will not turn it off! I like watching TV,” she harped back at me.

I heard a rustling, her son whispering, “Mom, just do it. I’m trying to sleep.”

“Hmphh!” There was a grunt, a complaint of springs, a rearranging of her ample body on the skinny fold out chair. A few clicks of the remote and the volume soared.

When I woke after just a couple hours of sleep, I saw Andrew for the first time through the eyes of a stranger. I studied his puffy fevered face, his emaciated body, and the ulcer on his gums that had eroded through to the root of his tooth. A mixture of fear and anger tore through me, propelling me from the room in search of someone from his medical team. I called Jon. An hour later, seven of us were squeezed into the staff lunchroom, five in white coats on one side of the table, Jon and I on the other, sleep deprived and disheveled.

“The medications you are giving him clearly aren’t helping,” Jon said to a group of steely-eyed doctors.

“Sometimes these anti-inflammatories take several months to show signs of working, so I think we should give the medication a little while longer,” the gastroenterologist replied.

He was a small, wrinkled man in his late sixties with papery yellow skin and large nose that easily held up a pair of thick glasses. He didn’t make eye contact with either of us. Instead, he studied a finely carved wooden pen, slowly rolling it back and forth between his fingers.

My blood was simmering, leaving me queasy. I wanted to scream, grab his pen and chuck it at the plate glass window.

“But you said he clearly does not have Crohn’s Disease, or Inflammatory Bowel Disease. How can we know if we’re even heading in the right direction with these medications?”

I could feel my pulse quickening, heat moving up the back of my neck. A small prickle at the base of my head—a hint of a migraine—made it difficult to maintain an amiable look on my face. Somehow, I knew we were looking in the wrong place, that we were losing ground, wasting time, but I had no better ideas.

Jon spoke what I was thinking. “Something isn’t right here. What are we missing?”

“We’d like to propose a much more aggressive trial of medications,” the current team lead interjected.

I had heard this before. Would it be anything new? With each meeting, a new group of doctors, specialists, social workers, and psychiatrists analyzed our situation from their own unique perspective. This meeting was no different.

“We want to blast the inflammation like we use chemotherapy drugs to combat cancer. It should allow us to get on top of things much more quickly,” he added.

I took a slow, deep breath in through my nose, held it, and slowly exhaled through my mouth. My yoga teacher said this signals the nervous system to relax. It wasn’t working.

“We’d like to double Andrew’s daily dose of oral prednisone and add an additional weekly infusion of methyl prednisone. We plan to up his pain meds, add some antibiotics in case we are missing any infectious process, and try an additional anti-emetic to calm his nausea.”

I looked at him like he was a lunatic.

He raised a finger, “Oh, and we would like to give him an additional booster dose of the biologic anti-inflammatory to see if there is any response.”

Jon and I sat glued to our chairs, the silence louder than if he had not spoken at all. This was crazy talk. It sounded more like an experiment to see how much a person could take before you killed them. The pen in the gastroenterologist’s hand suddenly went squiggly, wavy lines worked their way up his arm and neck, filling my vision. There was a hard pinch behind my right eye; moments later, a dull throb rolled through the right side of my head.

I was furious, powerless. It had been more than a decade since we began searching for help. I couldn’t fix my child, or even comfort him. I wondered if God had ditched us, moved along to something more interesting, more important, like chasing down the terrorists I read about each day in the news. Slumping down in my chair, I dropped my head to the table, feeling like someone had ripped my backbone right out the top of my body. All that was left were the soft parts of me, bruised and limp and helpless.

“Do you realize this is my child… and my heart you are dealing with? How much more can we take?”

Jon reached for my hand under the table and squeezed—a sign that we were in this together, even if it felt like our entire world was shattering.

After a long minute, I squeezed back.

Jon answered for the both of us. “We’re willing to try anything.”

What we did not know is what “anything” would turn out to be.

The following day was Saturday. Jon was able to relieve me from the hospital so I could go home to close my business. After my last call to a very disappointed client, I tossed my cell phone onto my desk where it promptly slid in to a coffee cup, sloshing a two-day old latte onto a stack of client files. I wasn’t happy about abandoning my career, but secretly relieved to stop the unnecessary insanity. With nothing left to do, I sat on the floor among bolts of fabric that had been carefully laid out and measured for cutting. Finn lumbered into the studio, circled twice and laid his furry canine body next to me, resting his head on my lap.

I closed my eyes, thinking of that long ago summer at Lake Michigan. I pictured myself kneeling in the water, sifting through bone-colored sand for Petoskey stones as I had a little chat with God. Or rather, I lectured and God listened. I assumed He would agree to my terms and was willing to leave it in His hands, but now, eight years had gone by and things had become even more dire. God and I were not on speaking terms. I really didn’t like Him, or Her, for that matter. God, Jesus, and the Holy Spirit were all pissing me off. Three had become a crowd, and I was looking for a cave to run to so I could lick my wounds and patch up my mangled heart.

Yet still I felt this deep connection with Becki, this desire to know her God, the one who manifested Himself in ways that felt so normal, they were profound. He sent Sue, who calmed Andrew with her soothing voice. In the form of a kind woman, He found me in the grocery store, weeping in the toothpaste aisle because I couldn’t decide whether to buy Crest or Colgate. The woman filled my cart with a meal for my family, paid for it, and loaded it into my car. I told her nothing of my circumstances, yet when she left, she said, “You are taken care of tonight. Bless you.” Long after she left, I sat in my car, trying to understand what had happened. More and more, I was convinced God had something to do with sending Frightful to heal my son’s heart.

When I told Becki how I was feeling one afternoon, she said, “Be mad. You have a right to be. God already knows how you feel, so no need to hide any of it. You certainly aren’t the first one to feel that way.”

So, I decided to talk honestly to God. I wasn’t sure where He was, or if He cared to listen, but I was lost. With my family life crumbling around me, and my career having vanished, I didn’t know who I was. I had become a hospital dweller whose name was printed on a badge and stuck to the front of her shirt everyday.

On the days I could eke out a few short hours for myself, I tried to vent by painting, but quickly put the brushes down before touching the canvas. I tried to sew a soft pillow for Andrew to lie on at the hospital, but when the sewing machine gobbled up my bobbin thread, I unplugged it from the wall and walked out of my studio. I even tried decorating sugar cookies with Hannah, but couldn’t keep focused long enough for the first batch to come out of the oven. Not only had I lost my artist-mojo, but I had also lost the rest of myself in our medical abyss.

I was lamenting this to a friend one afternoon when she suggested I see a therapist.

“I’m not a therapist kind of girl,” I had replied.

“Believe me, she’s not your basic therapist.” She slid a business card across the table, extracting a promise from me to make a call.

I walked into the office of the art therapist a few weeks later. Leah’s office was a menagerie of little gifts given by those who had shared their stories within those sacred walls. Pieces of art were tucked into every corner, treasures crammed the bookshelves, all created by students she had mentored over the decades. On the floor was a giant ball of twine, inside of which were tiny charms and slips of poetry tightly nestled in between the layers of string. Leah said it took her client six years to complete.

After meeting with Leah once, I knew I wanted to see her regularly. Each time I entered her ‘studio,’ my eye would catch something new, and off we would venture into conversations I never intended to have. It was an artist’s dream, a place to unwind, dig deep, and create. Even on the days I left a wastebasket full of tears, I would somehow leave unburdened—my heart and hands having been set free to roam in that safe place.

She had a project in mind for me one afternoon as I shuffled in, weary from tending to Andrew as he endured so much pain. Without a word, she handed me a white pastel board before opening a box of oil pastels resembling fat tubes of lipstick.

“These are Sennilier Pastels. Picasso had them especially made for him in Paris. He wanted them to be as smooth and pliable as women’s make-up.”

I smiled to myself, remembering from my art history classes how Picasso liked his women—smooth and pliable.

I reverently picked up a luminescent blue that looked like a perfect Parisian sky. The oil, made warm by my hands, smeared onto my fingers—slick, greasy, smooth—nothing like any medium I had used before.

Leah got up to turn on some music, then turned back to me with her kind, soft grey eyes. “I want you to let your hands create something beautiful. Fill the entire space. No mind.”

No mind? I tried to grasp what she was asking.

“Let’s say… about ten minutes,” she said, checking her watch.

Ten minutes? Not a chance. I had to think of something to draw first.

“No mind,” she repeated when she saw me struggling to start. “Don’t try to think what you should draw,” she insisted. “What color grabs your eye?”

“Blue,” I said, reaching for the Parisian sky.

“Mmmm…” A soft hum of agreement came from Leah. I glanced up to see a Mona Lisa smile on her face.

Her gentle presence helped me to free up my hands. I pulled the crayon along the length of the board, pushing pigment into the tiny pores. Then I chose another, and another, filling the board with soft oily pigment before using my fingers to smear the colors into shapes. And then we talked. Me with my face down, Leah with her eyes on me. I don’t remember what we talked about, but a lifetime went by.

“It looks like you’re nearly done,” she said, breaking me from my trance. Seeing me pause, she asked, “Do you want more time?”

I shook my head.

“All that in ten minutes,” she mused.

I couldn’t believe it. Only ten minutes? The ecstasy of not having to bring the burden of my thoughts with me had freed me from time. That was the very first time I understood what true meditation must be like.

“What do you think that is?” she asked after we both looked at the image in my lap for several minutes.

I looked at the drawing thoughtfully. “It looks like a mother holding two children, keeping them close. See the curve of the arms?” I pointed to the drawing where vivid colors were broken by a black line fading into a deep violet. “Where the two lines join at the top, makes me think of the head of a mother.”

“Yes,” she said, “I see it, too.” Leah’s smile reached her eyes, and back out to her fingertips. “May I show you the image from my vantage point?” she asked.

Carefully taking the drawing from my hands, she held it upside down—the way she saw it.

“It’s a heart,” I whispered to the woman who was holding my secret. It was my heart. Two uneven, rounded swells at the top, culminating in a point at the base. I stared hard at the image.

“It looks like the entire left side is on fire,” I gasped, recoiling from the red and gold flames that seemed to come from the left side of the image. The right side was colorful, cool, like watery pools. Like a lake, I thought. My lake.

I had frequent dreams about a lake, but it was always shrouded in a heavy, moving mist, until one night just before my appointment with Leah, I saw it clearly.

I was operating a floating coffee shop in the middle of a very deep lake. The lake was its own world, filled with trees and other living plant-like things that grew from the bottom up to the surface. Light penetrated all the way to the bottom of the lake. When the coffee shop closed, I would sit on the edge of the raft with my feet dangling in the water. At night, I would de-pressurize it and go to my home in the deep. The next day I would come back to the surface, my coffee shop restocked with coffee and the typical goodies. People would come from all over to buy my coffee and visit a little. One day at closing time, I had two friends with me. I invited them to de-pressurize with me. We went down the same as usual, but I could feel the ropes getting tighter and tighter until they snapped. We were too heavy. My shop jerked to a halt, and we had to work fast to try and re-pressurize it. I tried everything, but it was too deep now and it wouldn’t move. We were desperate for air and pushed off from the roof of my shop towards the surface. It felt like I had to go hundreds of feet. I sucked in a lungful of water right before the surface…

I woke up in a sweat, gasping for air. I remember pulling back the blinds in our hospital room to see the glow of streetlights, a soft apricot darkness. It felt like I had been away for days. Trembling, I stripped off my damp t-shirt and wriggled into my sweater from the day before as I went in search of something hot to drink. I carried that dream around with me all day and the next. It refused to fade like most dreams in the waking hours, when the mind sets itself on sorting the tasks of the day. Something about the lake forced me to pay attention to it. It was the way light passed through it, moving in such a way that it felt alive. When I walked to the parking garage later that night, I caught the scent of it on the breeze.

Here it was again, that same lake.

“Hmmm,” Leah said, looking thoughtfully at my pastel image. “Fire is purifying. It cleanses with heat to allow something new to take its place. A forest is renewed and transformed after it has been burned.”

I gulped down tears. She read my face with her eyes, a mere ticker tape of my anxieties flashing in front of her.

“Fire is necessary for its survival,” she said to the top of my bowed head.

“And what about water?” I asked.

“Water quenches the soul.”

I couldn’t meet her eyes. I was too afraid to believe her. It was just ten minutes of a coloring lesson. My heart was just fine. I didn’t want to be purified. I was working so hard to cling to life as I imagined it, that I couldn’t fathom what would happen if I were to let go. Would I be destroyed? And what about the lake in my dream? It had lulled me into its depths and soothed me—then turned on me and tried to drown me. I crossed my arms across my chest, a shield to protect me from those unsettling thoughts.

Leah handed the picture back to me. “This is strikingly beautiful,” she said in her gentle voice. “I knew it was inside of you.”