Dr. Torgerson sat down next to Andrew. “Have you told anyone this before?”
“Frightful knows.”
I groaned, sucking in a breath that sounded like I was choking. Dr. Torgerson glanced at me, my face now frozen with the realization that Andrew had known something was desperately wrong all along.
“I think I may have heard something like that before,” I squeaked.
Jon’s eyes were on me, probing, his gaze scratching at the side of my head.
The room went still as the memory assaulted me: Young Frightful folded in Andrew’s arms, all pinfeathers and fluff. I could still hear his voice, like it had somehow been captured by the leaves of the huckleberry and was just being played back now. I think my body is trying to kill me. No. It wasn’t real. I had heard him wrong.
I exhaled, the spell broken. Dr. Torgerson turned to Andrew, handling his fevered body with great care, delicately probing his ulcerated mouth, gently moving his aching limbs, studying his hands, fingers, and the soles of his feet. With closed eyes, he ran his fingers up and down along Andrew’s spine. I had no idea what he was looking for, but I trusted him. He was the first physician to be so reverent of my son’s condition.
“I really don’t know what to make of this, but I’m very interested in your case,” he said, turning back to us. “I would like to help if I can. In fact, I have a colleague at the National Institutes of Health in Maryland who may be able to help us.”
He scratched the name and number on a piece of paper and handed it to us. I couldn’t imagine what Dr. Torgerson was looking for, but I hoped the NIH guy was a genie.
Jon and I nodded our consent and instantly found ourselves buried in a flurry of paperwork in which we agreed to obscure blood tests and to provide a sample of Andrew’s DNA. Ten minutes later, we were politely escorted from the office.
“We’ll be in touch,” the receptionist called out as we left.
Jon and I exchanged a look of bewilderment. “What just happened in there?” he asked with Andrew curled tightly in his arms.
“I think they just kicked us to the curb again,” I said through frustrated tears.
Andrew turned his head to Jon. “I liked him.”
I stroked our son’s sweaty head, smoothing the tangled hair around his hot face. It was a shimmery shade of red, the same golden-red mane that caused people to stop me on the street while he rode in a stroller as a little boy.
“He’s the best one, Mom. I know it.”
Andrew said it with such conviction that I groped for Jon’s eyes over the top of his head. Right as the elevator door chimed, Jon nodded to me, a signal that he agreed.
Two weeks later, Jon, Andrew, and T-Rex traveled to the NIH in Bethesda, Maryland on a quest for answers. Andrew became a part of a human genome research project and was asked to supply blood, skin, and hair samples. He was photographed, charted, swabbed, biopsied, and examined, then sent home with a thick packet of information and a code number. They were told we would receive a phone call if they discovered anything noteworthy. When the two disembarked at SeaTac airport, I anxiously waited for some indication that there had been a breakthrough. Jon’s face told me it had been a difficult trip, but Andrew told me it was fantastic.
“They have HUGE machines at that place! T-Rex and I had our picture taken a zillion times, and they would have taken Frightful’s, too, if they allowed poultry on the airplane, except they don’t, apparently.”
Jon rolled his eyes at Andrew’s description of the week, then reached for my hand. “One step closer…to something,” he whispered in my ear.
I hugged him tight, a confirmation that, indeed, it seemed like we were making progress.
We heard nothing for months. Then, one Tuesday morning during Breakfast Club, I received a call from Dr. Torgerson’s office, asking us to come in at the end of the week. My posse of women-warriors told me that it was an excellent sign—they must have discovered something to help Andrew.
Two minutes into the appointment, Dr. Torgerson opened Andrew’s bloated medical file, and I started to panic. Considering my experience with the neurologist, I was terrified of what we might hear.
“We discovered something interesting,” Dr. Torgerson began. “It seems that Andrew has a gene mutation called Trisomy 8 Mosaicism (T8M).”
Jon and I sat in stunned silence. “So, what does this mean?” Jon queried.
I sat on the small bench next to him, mute, digesting this unexpected news. I did not like the word, ‘interesting.’
Dr. Torgerson leaned forward in his chair. “Well, I call it a genetic misprint. It means that some of Andrew’s cells have three number eight chromosomes, and some of them have the normal two chromosomes.”
When we looked at him in confusion, he began drawing on a white board, giving us a rudimentary lesson in genetics.
After several minutes of watching red X’s and blue Y’s tangle together with lines and arrows, Jon interrupted. “Is this what’s making him so sick?”
Dr. Torgerson sat back in his chair, the whiteboard forgotten. “I don’t really know. There are very few of these people living because Trisomy 8 Mosaicism rarely results in a viable pregnancy.”
A litany of unwanted thoughts tackled me, familiar thoughts from when the autism word was dropped in my lap. What if I had not conceived that night? If the odds of having a child with T8M were so staggering, wouldn’t my child be normal if I had just waited to have sex another time? I should never have had sex. I will never have sex again. Did I consume caffeine, drink any alcohol, eat too much fish, absorb too much mercury during those first few weeks of pregnancy? Did I do something wrong? Could this be my fault? The questions flooded my mind, and I was overcome with remorse over something of which I had no control.
I glanced at Jon, noticing his jaw set in concentration, his eyes unreadable. There was nowhere safe to land my gaze, so I hyper-focused on the colored dots speckling the floor tiles. They looked like a frustrated child had mashed crayons all over them. I wanted some crayons.
Dr. Torgerson shuffled through a stack of papers. “It seems that T8M manifests in a variety of ways.” He pulled out a cluster of graphs, turning to a dog-eared page in the middle. “It doesn’t seem to have a specific profile of symptoms such as a more common genetic condition like Down Syndrome. From what I have found, there are only fifty-two documented cases of T8M in the world—none with a set of symptoms like your son’s.”
A wave of heat rushed up the back of my neck, making me feel sick. Could it be possible that we had been hurdled into another storm? Wasn’t autism enough?
I thought about my autism tribe. I had found my place in that tribe. My little group of educated over-achiever mothers had been hand-picked to be the perfect support system. We navigated the public schools with the ferocity of a mama bear protecting her cubs. We grieved together, encouraged one another, admitted to the truths of our lives, and celebrated each other’s triumphs. But this? Fifty-two documented cases? In the world? There was no tribe. No familiars I could lean on who could say, “I know what you are going through.”
Jon and I were on our own.
“I can see I’m losing you,” Dr. Torgerson said, addressing me.
“I’m okay. Go on,” I said absently, envisioning myself anywhere else on the planet.
Per Dr. Torgerson’s suggestion, Andrew began taking several off-label medications that subdued his monthly episodes. Once Dr. Torgerson was convinced that Andrew was stable, he encouraged us to get away. So when Diana, the speech pathologist who had taught Andrew to talk, invited us to her family cabin on Lake Michigan, we jumped at the offer. It would be our first vacation together as a family.
We arrived in Traverse City, Michigan at dusk and were astounded at the relaxed manner of the tiny airport. No high-powered radar or x-ray machines, no random luggage checks, or the fear that our children might say something that would necessitate a strip search.
When Jon inquired about the rental car, the young man at the desk handed him the
keys and gestured toward the door. “It’s the silver one,” he said.
So much for shuttle busses and long walks through layers of parking lots. Revived at the prospect of reaching our destination, both kids began bouncing around the back seat, clicking the seat belts off and back on, while Andrew spewed random facts about the legendary pirates of Lake Michigan.
As we headed towards Northport, we began to wonder what the next week would hold. Would we all get along in the small cabin? Would our friends tire of us? Would Andrew be well?
We passed acres upon acres of cherry groves, the trees showing their heavy burden of fruit even in the darkening sky. Our first glimpse of Lake Michigan confirmed what we had been told—it looked like a great ocean. Only the dunes, grass, and lake algae gave it away as we peeked into the hidden coves and inlets common in the area. And the wildness! Even the quaint little towns had not tamed the dense wildness of the land.
Turning down a well-used gravel drive, we got our first glimpse of Diana and Tim’s cabin. It immediately reminded us of our favorite childhood summer camp. No baths, spas, luxurious beds, or that convenient distraction we think we need: television. Our friends, delighted to share their adventure with us, reverently showed us around the small cabin, explaining the history of each modest piece of furniture collected by their family over the last three generations. At the sight of our bunk beds, any hopes of romance over the next week flew out the window, joining the thunderclouds and bugs that mysteriously appeared since our arrival. By evening, every square inch of light that escaped our little home attracted the bugs, some nearly as big as a golf ball. In the unspoken exchange couples know, Jon told me he was ready to pack and leave.
In the morning, I awoke to the purposeful stride of my daughter as she checked on us in our bunks. Rolled in her pink blanket, Hannah assured herself that we were where she had left us the night before. She padded to the front room. Later, I found Hannah, Andrew, and Cory flipping through a stack of Calvin & Hobbes comic books. Not long after, I heard the bang, bang, bang of the screen door as the three kids stole away to the beach.
Following the children with mugs of steaming coffee in our hands, Diana and I carefully made our own way down the path. Not fifty yards from the cabin, the trees opened up to a sight I hope remains embedded in my children’s memories for life. The water was a transparent blue, reflecting a peerless blue sky flecked with wisps of clouds. The vanilla dunes were already warm from the morning sun, and we relished how the breeze had chased away the Amazon bugs that visited us the night before.
“We’re looking for pirate gold!” the boys shouted as we walked down the beach towards them.
“…and we must be getting close!” called out Andrew.
Just then, Hannah’s blond ponytails popped out of a hole. Covered entirely in sand, she grinned at us opening up little hands filled with flat round stones. “I have treasures, too!”
Hannah’s treasures were sprinkled in the soft white sand. In the water, they seemed to float to the surface. As I leaned over to study one, Diana laughed, noting the familiar stooped posture of everyone who discovers the treasures of Lake Michigan for the first time: Petoskey stones. I had thumbed through a book about them in the cabin that morning. A caption under a colorful picture said the little pieces of fossilized coral were three hundred million years old. I turned one of the legendary stones over and over in my hand.
“They’re called, ‘Sunbeams of Promise,’” Diana whispered from behind.
I studied the smooth stone in my palm, gleaming with life centuries ago, and the promise of new life yet to come. I slipped it in my pocket. A promise to keep.
The moment we arrived home, Andrew ran out to the hen house. Frightful pressed herself to the gate, dancing from foot to foot, waiting. He scooped her into his arms and sat in the doorway, smoothing her feathers with both hands while she hummed deep in her chest, a sound not unlike a kitten purring.
“Coo-coor-coo-rrrr.”
I missed you, Andrew.
“I missed you too, Frightful,” he answered back, running his hands along the tips of her tail feathers.
“Krrillll…Chirp. CHIRP!”
Where were you?
“I went to a ginormous lake and dug for Pirate Joe’s hidden treasure. Hannah even brought some home with her. It’s called Petoskey Gold.”
Frightful nestled deeper into his lap and resumed her song, presumably satisfied with his answer, but mostly glad that her friend was home.
I kept my Petoskey stone with me for years, either in a pocket, on my dresser, or more often in the bottom of my purse with a jumble of gum wrappers, pens, and lip gloss. When my fingers brushed against the smooth stone, I remembered that perfect week—the shared memories with our friends, and the reuniting of Andrew and Frightful. It had been a week that I tried, and even sometimes forgot about, the fear that lived in the back of my mind.
Chapter 7
By the next spring, our flock of six chickens began laying eggs every day, causing an egg-glut in the neighborhood. To ease the burden on our small refrigerator, I packed our extra eggs in large squares of colorful cloth and tied the top with yarn from Hannah’s craft bin. Our friends and neighbors received these tasty gifts frequently, whether they wanted them or not.
True to the picture at DeYoung’s Feed Store, Frightful matured into a blaze of golds and reds, with deep bronze feathers outlined in black. Her eggs were the color of a summer sky. She and Andrew had a strict routine that varied only on the days he was in bed with fever. It started with an early morning chat on the porch, followed by a walk around the yard. In the afternoons, Frightful had superhero practice which included a series of maneuvers Andrew put her through, ranging from balancing on his shoulder, to sitting on his head, clinging to a stick, or riding a bike while stuffed into his jacket, zippered up to her beak.
But the most extraordinary thing was their conversation—a mesmerizing combination of gestures, vocalizations, and humming you wouldn’t think possible between two different species. While it was true we could distinguish a variety of sounds that came from the coop, there was something about the way Frightful communicated with Andrew that was very different from the usual barnyard banter. We were all used to the morning cackle that sounded like, wra-wra-wra…WRA! as each of the hens announced the arrival of an egg, or the cluck-cluck-cluck! as they scored a patch of tasty bugs in the yard. But when she was with Andrew, Frightful’s sounds became almost musical—a soft cooing, a trill, and even a purr that made her love clear.
“Andrew is singing and clucking again,” Hannah said one afternoon, “…in the playroom. And it’s annoying.”
“Then you should ask him to stop,” I said while hemming a curtain panel for a client.
“He’s talking to Frightful.”
Annoyed, I walked downstairs to verify Hannah’s story.
“We don’t live in a barn, Andrew!” I said.
Andrew was playing X-Box with a controller in each hand, one for him and one for the chicken. Frightful clutched his leg. I’d seen that look in her eyes before. I could almost hear her scolding me. “What’s your problem?”
“Andrew, Frightful is a barnyard animal. Why do you think Dad built her a condo in the back yard?”
I was irritated that I kept finding the chicken in our house, and definitely wasn’t keen on the occasional plop of chicken poop on the floor.
“This looks like a barn to me!” Andrew said, waving a free arm around the room.
Frightful climbed up on his shoulder and stared at me. I had to admit, with two dogs, a cat, Legos, stuffed animals, books, and Barbies clogging the floor, it did look a little like a whacko barn. I brushed a stack of comic books out of my way and sat on the floor next to him. Andrew continued to hum and click his tongue while playing Sonic the Hedgehog, and Frightful responded with a series of chirps and cooing that could not be mistaken for anything other than a love song.
“Tell me about your game,” I asked.
“I’m
teaching Frightful to play. It’s about a hedgehog named Sonic, but I like the one called Shadow. He’s the best.”
“Why is Shadow the best?”
“Just ’cuz,” he said.
It was obvious he was done with the conversation, so I sat next to him, silently, watching Shadow the Hedgehog gobble up gold coins on the screen, the soundtrack eerily reminiscent of a Vegas slot machine.
“See! I’m getting more energy. More superpowers,” Andrew said, bouncing in the chair.
Frightful grabbed onto a tuft of hair with her beak for balance while keeping one lizard-eye on me. I noticed Andrew’s ears were turning a deep shade of crimson, the pink having already begun to finger its way to his cheeks. Was it happening again? It hadn’t even been a month! A fresh wave of anxiety speared my gut, leaving me hopeless, and fearing I may never get my life back. I closed my eyes and prayed it would go away, this unseen monster that plagued my son. I prayed that when I opened my eyes, the fire would have left his body. I cracked open an eye, then went in search of Ibuprofen, pain meds, and a glass of water.
This time, the ulcers were deeper, more painful, and more aggressive, spreading to his tonsils and down his throat. It left him curled on the floor in agony as the feeling of burning sharp sticks poked at his flesh. The fever blew in with such force that by the next morning, we were in the hospital.
A month later, it happened again. Dr. Torgerson, having exhausted his arsenal of trial medications, sent us to Rheumatology, where they tried a variety of biologic drugs. Andrew was subjected to monthly, then weekly, then finally, daily injections of immunosuppressants in hopes of calming the raging inflammation in his body. Sometimes it helped.
But there were days when he would not leave his bed and we feared we were losing him to some dark place in the back of his mind—a place beyond autism’s grip. Days when the only living soul he would speak to was Frightful, the chicken who was supposed to live in our back yard, but who had moved into our home and become a part of our family.
There were other times when it seemed like our nightmare was just some sort of temporary insanity we had conjured up. Andrew and Hannah would behave like other teenage siblings who quarreled, plotted, and bickered, and were generally doing their best to figure out how to grow up.
The Chicken Who Saved Us Page 6