During one of those times, on a whim, when Andrew was thirteen and Hannah ten, we took them to France and Switzerland. Our friends and family told us we were crazy and reckless, that Andrew shouldn’t travel. That something could happen. We told them we believed that children must see the world, but the truth was we felt compelled to go. We feared if we didn’t go right then, we might not have another chance. So we plunged into our savings and left. For two weeks, we hiked in the Alps and fed cows the white petals of edelweiss. We visited the Normandy beaches and marveled at the remnants of the mighty Romans in the south of France. And when the fever tried to break through, we threw prednisone at it and kept going.
Even when we returned home, there were months when we were able to manage the fevers with an emergency dose of prednisone. But then the days came when his body threw the prednisone back at us with even higher fevers, more inflammation, and more pain, and there was nothing left to do but ride the tsunami. During those months, we were carried out to sea, tossed and mangled, and hurtled back to shore a little less confident, a little more wary. At times, I was able to go with the ebb and flow, and at others I railed against the beast. Why? Why Andrew? Why us? I would cry out to the gods of my nightmares. And then the daylight would come, pushing the blackness away to the far reaches of my mind, and I would seize the sunshine, harness it really, and ride it all the way to the next fever.
Chapter 8
A barrage of automated phone calls began clogging our voicemail each day at precisely 10:15 a.m. I stopped answering the phone around ten, knowing it was the high school office reporting that Andrew hadn’t shown up for school. No matter how many times I called the front desk, inevitably, one of his teachers would report him absent or tardy, kicking the automated system into gear.
I was standing in the foyer of the high school one afternoon with a grumpy and impatient line of students and parents behind me. “He’s still sick. And no, I don’t know when he’ll be back,” I told the secretary.
“What kind of bug does he have?” she asked.
I started to answer, then finished with, “It’s too hard to explain.”
A week later, I received a threatening letter from the school district, stating that Andrew had missed seventeen days of his freshman year and it was only October. They were holding us, as his parents, responsible for his lack of education and would not guarantee a passing grade.
For the rest of the afternoon, I was plagued with thoughts of hostile replies to the school district. When I went in search of Andrew before dinner, I found him engrossed in a drawing of a hostile takeover by the Allied forces. After our visit to Normandy, he had taken a huge interest in World War II, and was now an expert in all things pertaining to D-Day. Both grandmothers fueled this interest by purchasing every single book and movie about the Allied forces and the D-Day invasions they could get their hands on. Anything that would make him happy or put a smile on his face was worth every penny they spent. It kept his mind occupied during the times he was ill, but it did nothing to calm my nerves. We had made little progress since joining the rheumatology team, and I was becoming increasingly alarmed by his escalating pain and fevers.
“What does the pain feel like?” I asked him more than once.
Searing pain from the gaping ulcers in his mouth I could imagine, but the phantom pain that roved through his body was a mystery. Nobody could get him to describe what it felt like. But one day, I saw him show Frightful.
“It’s twisty,” he said to the bird in his lap. He raised both hands, fisted, in front of him. “Like this, Frightful.” He cracked both fists together, rotating one forward and one back. Then he sliced two fingers in an X across his belly. “Do you see? There are sharp knives in my belly that are twisty. Sometimes my bones hurt, too, like they were crushed,” he said.
Frightful stood, turned to face his clenched fists, and pecked at something on the cuff of his sleeve.
“You understand, don’t you, Frightful?”
Frightful answered with a low rumbling in her chest, followed by a familiar warbling coo—a song to soothe his soul. I murmured my silent thanks to Frightful for being there to draw my son’s pain out into the open.
When I saw Andrew make the sign of cracking-fists one other time in the throes of a scorching fever, it prompted me to call the hospital nurse line. “It’s twisting knife-like pain,” I said. “I heard him say his bones felt crushed. What does that mean?”
The nurse had little to offer beyond forwarding my message to the doctor. My anger at the lack of answers drove me to become a bitchy pain-in-the-ass parent who refused to be ignored. So I called the nurse line every day, using his hand motions as a way to describe his misery, verbally documenting the amount of drugs I gave him to alleviate the pain, and begging for more doses of prednisone to throw at the inflammation clearly beginning to take over his entire body.
When that didn’t help, I changed tactics radically. I cried out to the God of my childhood, the one who promised to never leave me, and the one I assumed would make my life easy if I just followed the rules. I realized it had been a while since I chatted with God, and I wasn’t sure where to start, so I dove in with what I thought was a legitimate complaint:
“Why is this happening to me, God? I’m doing everything you asked of me. You said you would make our paths straight, but mine definitely has too many switchbacks in it, and I think I’m gonna barf! Can’t you fix it?”
When I didn’t receive an immediate answer, I attempted bargaining, mixed with pleading, followed by begging for mercy in exchange for anything He wanted from me. In the end, I was left to the rudimentary prayers I had learned in Sunday school—prayers that made me feel safe.
My first introduction to God was in the basement of a local church. There, I met a bearded man with a flowing white robe, who was flat and lived on a felt board. There were other important characters on the felt board, too, like Jesus, Moses, Mary, and King David, and something called the Holy Spirit, really a silver bird that looked like it was dive-bombing the earth.
“These three are actually one,” my Sunday school teacher told us.
She had moved the grey-bearded God figure next to a sandal-clad Jesus and the shimmery bird. I remember trying to wrap my head around what she just said. All I could think was, “A kamikaze bird is an animal, you dummy. I don’t think you got the story right.” But as young children often do, I took her words as gospel and began my relationship with this mysterious bearded man.
In those school years, God became a one-dimensional man with whom I could hold a one-way conversation. He was also an idea—a perfect set of convictions that I put in a box and tied with a bow. I had no doubts in my beliefs, and knew God would forgive me at my best and at my worst. I also learned about acceptable behavior: Swearing was bad, lying was worse. You must love everyone, even if you knew they were wrong and going to hell. Never sit on a boy’s lap, mini-skirts were begging for trouble, kissing was okay but wandering hands were not. God was watching. Surely I would be eligible to walk through the gates of heaven if I could just follow those rules?
In college, my world exploded as I bumped up against people who had a different God-shaped box. I became lost. I wasn’t sure what I believed, and God became a little more confusing. So I kept Him in my own box where he fit best, a place where I could easily define the Trinity, wrap my arms around it, and understand it.
And that’s where God stayed until my son was born and my carefully crafted box was blown to shreds.
The day Andrew was born, I cried out to God, Please help me! and I trusted He would hear my cry.
Here I was, once again, calling out for His help, yet I wasn’t certain he had heard me.
If you are there, God, please make my son well, I begged. I waited for some divine feeling to come over me, assuring me my prayer would be answered. When it didn’t come, I became even more desperate. So one night as I chased sleep in vain, I decided I needed help from someone with a direct line to the Almighty. I
left Jon in bed and crept into my studio, where I sent a desperate email to a church we attended only a few times.
“HELP!!” it read.
Within minutes, Becki, the care pastor, called. I had seen her in the pulpit only once, but knew she was somehow different from other clergy. She engaged the congregation in a way that made us feel like she was a dear friend we had known forever. She made the Gospel relevant, speaking the truth as she saw it. I left church that day feeling like she had spoken directly to my heart.
“I have all the time you need,” Becki said.
Between bouts of tears, I told her our family’s story, the one we so carefully kept under wraps. I told her I couldn’t reconcile my childhood God with what was happening in my life. I had spent years trying to live a blameless life, hoping it would somehow spare me troubles in the future. But here I was now, with a desperately ill autistic child who preferred to speak to a chicken rather than me, and a daughter who thought it was her job to keep him safe. Becki was quiet on the other end of the line, leaving me to wonder if I had done the right thing by calling.
“I don’t think I can do it anymore. Where is God in all of this, anyway?” I cried out of desperation. I couldn’t imagine a way out or a time I would ever feel at peace. I was living in a dark tunnel of despair, searching for a tiny speck of light that I hoped was there.
“I don’t believe God has ever left you,” she told me. “But He never promised a trouble-free life.”
“I’m not sure what I believe,” I admitted after a few minutes.
“What would you think of a visit?” she asked, changing the subject entirely.
“Now?” I was intimidated by her offer. I had never had a pastor over to my house.
It was near midnight when Becki slipped through our front door wearing her pajamas and fleece sweatshirt. The house was asleep, my dog Finn and I were the only ones to greet her. I knew it was only a matter of time until Andrew would be up again needing pain medication.
“You need to let people help you,” Becki said as we made our way to the kitchen.
I plunked down wide-eyed and numb on a kitchen barstool, my reflection in the window a ghostly white. Two shadowy reflections stared back at me, and somehow I knew the stranger next to me was supposed to be there.
“I don’t even know what to ask for. People don’t know how bad it really is,” I said with a deep, shuddering sigh.
I told her what our days were like—how I experienced a constant feeling of anticipation, even loathing, of the fever that would strike our home every month. I described the mouth ulcers that appeared out of nowhere, bringing with them a searing pain so intense that my son refused to allow anything to pass his lips. Then there was the roving, jabbing pain that couldn’t be pinned down, which often landed in his legs or his chest or deep in his belly.
“But the nights are the worst,” I said. “His pain somehow magnifies and we all hear his cries coming from the bathroom. Sometimes I even feel his pain in my own body. Do you think that’s possible?”
Becki reached out to take my hand and something ruptured, something primal and out of my control. A keening escaped from my lips and I looked up, wondering who had made the sound. Snot and salty tears streaked my kitchen table, and a growing mound of wadded toilet paper formed a snowy white mountain in front of me.
We moved to the living room. Becki was on the floor, barefoot, looking up at me. Finn draped himself across my legs, his golden retriever body anchoring me to the couch, protecting me from the grief he sensed in the room. I studied Becki through narrowed eyes, wondering about this stranger I had let into our home. What did she think of my story? Did she think I was crazy?
“I do think it’s possible to feel another’s pain. But I wonder if a mother can feel it on a deeper level than we might imagine? It’s a mystery,” she said to the ceiling. “But regardless, this all sucks so bad.”
I smiled through my tears at her unexpected comment.
“Can I share your story with a few people who I think can help?” she asked, turning to me.
I nodded, yes.
She held my gaze. “You will have people now. People who can hold you, your family, and your story.”
Becki left my home as quietly as she had come, but somehow in that short time, she had created a tiny opening in my black tunnel and had let in the smallest glimmer of light.
The next morning, Jon asked me what I was doing up so late, if I was watching TV.
“No. Not exactly.”
He pulled toast from the toaster and stuck a coffee pod in his Krups coffee maker. “Oh. I heard voices and I just assumed.”
“I called the church down the street. One of the pastors came over to visit,” I said as casually as I could.
His face fell. “Why?”
“Because I can’t do it anymore. We can’t do it anymore!”
He scowled and tossed his coffee into the sink. “I think we’re doing just fine. Why didn’t you talk to me first?”
I felt the cold chill of being reprimanded. Like I was a kid who had deliberately disobeyed their parents. I knew Jon wasn’t thrilled about others knowing what went on in our home. Even our own parents didn’t know how dire the situation was.
“What about Hannah?” I asked. “She needs more of us, and I have nothing left to give.”
Hannah had been shuffled between home, grandparents, and neighbors for months and she had started to withdraw in a way that concerned me. Her contagious laugh had all but disappeared, and more often than not, I saw a slight frown crease her pretty features, making her appear angry and unapproachable. Although Jon and I could see her struggle, neither of us had emotional energy left to draw her out of her cave. The truth was, tiny micro-fissures had formed in our marriage and we were using what little energy we had to keep it glued together.
“She seems okay to me,” he said, with a little less conviction.
But it was clear to me we needed help, and Becki had promised to get back to me right away. In fact, I had slept with my phone for the first time that night, determined not to miss her call.
Andrew moseyed into the kitchen and sat down at the counter, looking first to Jon, then me. “I heard you talking, too,” he said, reaching for the cereal.
My heart gave a little leap. How much had he heard? Had I told Becki something that could be misunderstood?
After school, Andrew hung out in the chicken coop, refusing to come into the house. He dumped his backpack on the floor and, as usual, I checked his binder for any notes from his special education teacher. I found a stack of drawings—his familiar pictures of dinosaurs—bloodthirsty raptors chasing docile herbivores. There were a few new drawings with schematic plans of D-Day invasions he had traced out of books, but the one that took my breath away was the drawing of a boy with wings and a cape, and what I am certain was a chicken on a cloud labeled: Heaven.
I burst into tears. I didn’t know what this meant. Did he mean that being with Frightful was heavenly? Or did he think that he was dying and going to heaven soon? I was terrified that maybe he was right, and I couldn’t bear to think that thought.
I walked out to the chicken coop with his drawing in my hand, fully intending to ask him about it. When I reached the door, I heard Andrew talking in that reserved tone to his chicken.
“Frightful, you are my only friend.”
“Krrillll…Chirp. CHIRP!”
You are mine.
“You know me best.”
“Crawww-cruk-cruk.”
I’m here for you.
“I can tell you anything.”
“Tooka-tooka-took.”
I will keep your secrets.
“Please don’t leave me, Frightful.”
For the second time, my son’s words sucked the very breath from my lungs. I was drowning, reaching for the surface of my world, with no air in sight. I walked back to the house, clearly shaken, with the drawing crumpled in my hands.
Chapter 9
“The medic
ine Frightful takes doesn’t make her better,” Andrew told me one gloomy October afternoon.
Frightful was shoved in the front of his sweatshirt with both scaly feet poking out beneath the hem.
“What do you mean?”
“It’s not working.”
I knew he wasn’t talking about Frightful. He was talking about his weekly infusions of methyl prednisone and the fact that he was only getting a few days of marginal relief at a time. The first time he had transferred his feelings to something else was with Ben, his little velveteen bear. Then came T-Rex, who took the brunt of his pent-up childhood frustrations. I suppose it allowed him to avoid feeling the full impact of emotions he couldn’t really explain.
“What does Frightful think we should do?” I asked.
He shrugged his shoulders and patted the bird that let out a squawk. “I dunno.”
“Well, I don’t know either!”
A million conflicting emotions clashed in my mind. I was out of ideas and it seemed that no matter how hard I pushed for answers, the doctors just threw their hands up in the air and repeated the same thing: “We don’t know what to do.”
It made me crazy, this feeling of helplessness. I had no power to change things, so I channeled my frustration into a maniacal cleaning of the house, starting with Hannah’s closet. I stripped hangers and shelves, and tossed toys and shoes on to the carpet. Drawers were dumped, walls were cleaned, and I disinfected every surface I could reach. I was headfirst in the back corner of Hannah’s closet scraping something sticky off the wall when it occurred to me: “Maybe…being a superhero is the only option,” I said.
I emerged from Hannah’s closet holding a Batman cape I found wrapped around one of her American Girl dolls. “All you really need is one cool trick or talent…or just a plain old cape,” I said, more to myself than my audience of two.
The Chicken Who Saved Us Page 7