“They’re replacing his NG tube through his nose right now. It came out this afternoon.”
I didn’t tell her about the drama that preceded Sue removing it. That was a story I didn’t have the energy to tell. I shifted my weight in the planter, triggering the glass doors to open. Andrew’s frightened protests tumbled out from the end of the hall, skewering my heart with a fresh wave of pain.
“Does anyone know why he continues to get worse?” Julie knew it was a loaded question.
“No. They have no idea.” I turned my face to the sky, catching flecks of rain off the edge of the overhang, cold splatters dampening the front of my sweatshirt. Grabbing a handful of broken geraniums, I crushed them in my hand before tossing the bruised petals to the pavement. “Tonight they discovered he has an inflamed liver, appendix, spleen, bile duct, and part of his lower intestine.” I said it like it was a common thing to be chatting about on the phone.
Julie sucked in a deep breath on the other end of the line.
“I honestly don’t know what to think. I’m numb,” I said.
The phone vibrated in my hand. Pulling it from my ear, I saw my favorite picture of Hannah flash onto the screen, one taken at the beach a few summers before. A picture of a little blond girl clad in a pink and tangerine swimsuit, leaping in the air above a glittery sapphire sea.
“Hannah’s calling. I have to go. And thank you for listening.”
I clicked over. “Hi, Mom,” Hannah said in her sing-song voice, the one she used when trying to cheer me up.
“Hi, sweetheart. You still up?”
I checked my phone for the time. 3:24 a.m.
“The dog gacked on the carpet again. But don’t worry. Grandma and I cleaned it up before we left.”
Finn had a little problem with doggie-anxiety. When he sensed tension in our home, he didn’t know what to do with himself. It usually resulted in him leaving his coveted spot on the heat register to drag himself down the hallway to the area rug in front of the TV where he proceeded to barf on the carpet. Never mind that he had just crossed miles of hardwood floor to get there.
“Me and Grandpa are making waffles in the morning. Do you want me to save you one?”
Rainwater ran down the sides of my face and I wiped it away with the sleeve of my sweatshirt.
“Mom?”
“Yes, honey, I’m here. Why don’t you save me a couple for when I get home?”
“I love you, Mom. Brother will get better.”
Brother will get better. It was part statement and part question and since I didn’t know how to respond, I said, “I love you, too. Very much.”
I shucked my wet sweatshirt and tied it around my waist before walking back in to the lobby. I slipped past the woman with the paper butterfly and back into the room, where I found Jon sitting bolt upright, asleep in a chair. The room was full of shadows, the only sound Andrew’s drugged breathing and the whir of the narcotic pump.
I pressed my face to the top of Jon’s head, breathing in the familiar scent of his spicy shampoo and my favorite lavender soap—a perfect mixture of the two of us.
“You can go now,” I whispered into his hair.
He reached up to stroke my face before fishing his keys from his pocket. “Let me sleep a couple hours, close up a few things at work. I’ll be back after lunch.” And then he was gone.
I stood there, feeling alone, like I had never been here before, although I knew for a fact we had been in this very room the week before. I reached for the doctor’s wheeled stool and crab walked it to the edge of Andrew’s bed. Andrew reached out a hand, placed it in my open palm, and made his familiar symbol for bird: Pointer finger and thumb pinched together, the remaining three fingers spread out in a fan.
“You miss her, don’t you?”
He bent his wrist forward, then back, confirming his answer with a hand-nod. I cupped my other hand over his, sandwiching the thought of Frightful between my two palms.
My skin prickled as a thought pushed its way into my mind. I remembered seeing Andrew and Frightful on the porch only days earlier. But instead of their usual place in the old wicker chair, he lay flat on the wooden steps with her nestled on his chest. His body had been soft, relaxed, melding into the wooden planks. A look of contentment painted his features, even though I knew he was in pain. I thought it a little odd at the time, but hadn’t asked him about it.
Andrew slipped his hand from between my palms, tapped his chest twice and laid his hand over his heart.
“Yes. I know she likes to sit right there,” I said, reaching out to touch the area above his belly. He winced. “Does she know how you feel? That you’ve been having a hard time?”
He nodded with his head this time. “Frightful has special powers,” he said in a voice barely above a whisper. “She fixes my heart. When it’s scared, it flutters and jumps around. When it’s sad, it’s too heavy.” He reached for my hand, placing it on his chest. “She makes it work right. She makes me better.”
I let my head fall to the bed, face down in a rumple of starched hospital sheets. How did this child of mine, who so often spoke in a way I didn’t understand, make more sense than anyone else? After a while, I felt Andrew’s breathing deepen, his body twitch. He was asleep again.
That night, Andrew was admitted to Seattle Children’s Hospital for the fifteenth time. He was hydrated and medicated for pain. When the pain went beyond what the medications could mask, I became his voice again, translating his version of sign language to his medical team. This time, they didn’t tell me it was the flu. And this time, he didn’t come home with us the next day, or the next week. He remained in the hospital for months.
At home, to bring some outward show of control in our lives, Jon thrust himself into gardening. Soon, our lawn was devoid of any weed, moss, or fir cone, and an unnatural shade of green due to the amount of fertilizer he poured on it. I, on the other hand, scoured the Internet like my hair was on fire, anxiety propelling me into the wee hours of the night, hoping for a morsel of information I could grab onto, something that would be a miracle cure. When I failed, I threw myself into my growing stack of notes, sure that some clue would reveal itself.
Hannah was just the opposite. She became quiet, reserved, even stoic at times. “This is for Andrew,” she said one day, a shy smile tipping at the edge of her mouth.
She handed me a construction paper envelope full of notes, each with a hand-drawn picture of Frightful in a variety of poses and costumes. One as a soldier with a rifle, others as The Hulk, Superman, Iron Man, and Shadow, each with a determined look on his face—if that was possible for a chicken with a beak for a mouth. “It’s for courage,” she said. “He can be strong if we’re strong, too.”
I started to weep. Hot tears pushed through my simmering anger and despair at the unfairness of our life. How could this be happening to us?
I drew her close, squeezing her in a bear hug. “Yes, Hannah. We all need courage. Thanks for reminding me.”
That simple gesture stopped my frenetic searching, and served as a stark reminder that I had two remarkable kids who needed not only my love and attention, but my courage, too. It would take courage to summon faith in something I couldn’t see. I wasn’t at all sure what that meant.
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 a
lready 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.
The Chicken Who Saved Us Page 10