Finishing the last bite of cake, Nancy stood up and stashed her fork back in her pocket. “That’s not a problem. I’ll see you later then.” The session was over.
Andrew’s eyes followed her out the door. After a few quiet moments, he looked over to me on the cot and said, “She’s a strange one, Mom.”
On Wednesday morning, there was a sticky note on our door that read, “Nancy will be here at 2:00 p.m.”
Who’s Nancy? I thought, before remembering the strange cake-eating woman. I couldn’t imagine what the next physical therapy session would be like. At 2:00 p.m. sharp, a cart rumbled down the hall and stopped in front of our door. A persistent knock came from the other side.
“Andrew, can you open the door for me? My hands are full,” a voice called from outside.
Grumbling, Andrew hoisted himself out of bed, unplugged the IV poles from the wall, and drug them to the door. With a quick thank you, Nancy moved in and began setting up a mock kitchen.
“We’re making Red Velvet Cake today,” she announced to her speechless patient.
She proceeded to pull measuring cups, bowls, utensils, baking pans and carefully packed ingredients from the bottom shelf of the cart—much like the Harry Potter character Hermione, pulling a full-sized tent out of her magical purse.
Within minutes, Nancy had transformed our room into a working kitchen. Handing Andrew a set of surgical gloves, she began her lesson.
“So I heard you want to be a chef. How about you show me your stuff?” she said.
“What do you want me to do?”
“Bake a cake.”
For the next forty-five minutes, Nancy had Andrew reaching up high to retrieve measuring spoons she had set on top of cabinets, and squat down low to grapple with unruly bags of flour. She asked him to blend, sift, and finally mix 200 strokes with a wire whisk. His arms were sore and he was tired, but there was a smile lighting his face.
Nancy read from her recipe card. “The last step is to put red dye in the batter. It calls for two teaspoons.”
“I like it my way,” Andrew said, dumping the entire bottle of red food coloring into the golden batter.
A gleeful, impish grin spread across his face, and my heart melted. Nancy, like Sue, spoke a language Andrew could relate to. She was able to enter his world, see things the way he saw them, and make him feel capable of something he could never have done just weeks before.
I woke up Thursday morning to see someone had written, “FRIDAY: Discharge Day!” in big blue letters across the top of the white board.
“No! This is too fast. I’m not ready!” I cursed the unwanted message.
I couldn’t imagine Andrew, minus two poles and four pumps full of IV medications grinding away twenty-four hours a day. Taped under the announcement was a list of back-to-back appointments scheduled for the next day. My throat tightened and I felt the tingle of tears. I didn’t want to think about tomorrow. I wanted coffee.
Dr. Burroughs caught me in the hall as I was making my escape. “Let’s talk,” she said, leading me to the playroom.
Was it bad news? I couldn’t handle any bad news. Dr. Burroughs studied me for a moment. “You’ve been here a very long time. It’s a big deal to go back home.”
Without realizing what was on my mind, I asked, “Will things ever get back to normal?”
She eyed me carefully, leaning forward in her chair. “Things will never be normal.”
The words felt like a slap to my face and I shrunk back from the sting of it. Unconsciously, I raised my hands to rub at my reddened cheeks. Why would she say something like that? Hadn’t I been laboring each day for two years in hopes of getting our lives back?
“I don’t believe that,” I said.
Dr. Burroughs’s face softened. She picked up her chair and moved it next to mine. I stared out the window at the nearly complete hospital addition that soared four stories above the building we were in. The exterior trim and facade was complete, a breathtaking example of contemporary Northwest architecture. A new construction team was completing the internal workings of one of the most sophisticated medical buildings in the region. How I wished they could construct my internal workings.
“What I meant was, you can never go back to your old life the way it was. Everything has changed. Andrew has changed.”
Tears spilled down my face, clear evidence of my silent grief. Dr. Burroughs turned to me, her hands on my knees.
I stared at her through my tears. “I’m scared to go home. I don’t think I can take care of him.”
Home was a thirty-minute drive across the Lake Washington floating bridge, but to me it felt light years away.
“We aren’t just letting you go, you’ll be on a very short leash,” she said with a smile. “When you wake up each morning and Andrew is well, then know it’s a good day. We don’t know what will happen tomorrow, but we do know what is happening today. Live in the goodness of today.”
I allowed the truth of her words to sink in. They reminded me of Becki’s advice months before when she encouraged me to be present, to live in the moment.
“But I’m not sure how to do that.”
“Expand your definition of normal,” she said. “Make room for the unexpected—that will allow you to live your life.”
Standing up to leave, she placed her hand on my shoulder in a parental gesture of encouragement. “You are brave. Your son is strong. You will be okay,” she whispered into my ear.
After she left, I slipped into the community bathroom and bolted the door. Gripping both edges of the sink, I looked up and met myself in the mirror. Green eyes stared back at me, full of questions. Why am I so scared to go home? How do I re-enter my life? How can I care for an adult child that requires 24-hour nursing care? The medications, IV’s, caring for the Hickman line—if I screwed up, it could mean the difference between life and death.
Stepping back from the sink, I considered the mother in the mirror without judgment. Was I the same woman who held a newborn baby on her chest one early July evening? The one who feared she wouldn’t be able to raise a child she didn’t know? Had I done a good job?
The green eyes in the mirror twinkled. Are you ready to admit that you have done the very best you could? they asked. That you have loved this boy and raised him well? That you gave up your life to fight for his life?
Sinking to the floor, I allowed the reality of those words to wash over me. I felt… relief. Jon was right. We left no stone unturned. We had done everything.
A moment later, I heard silent words speak to my soul, “You are not alone.”
“I am not alone,” my heart replied.
A flurry of activity descended on us Friday morning. Jon and I were anxious about taking home our fragile, skinny, and bald child. Newly untethered from the last of his poles, Andrew walked around the room—a free man. Clutching our coffee cups like a life preserver, we were whisked off to the first meeting of the day.
“You’ll be administering Andrew’s IV’s at night until he doesn’t need them anymore,” a woman with frizzy yellow hair said. She recited the directions from a note card and demonstrated on a miniature Hickman line attached to an IV bag. She handed the apparatus to Jon. “Now repeat what I did.”
I watched Jon as he first flushed the line with saline, then attached the bag like she demonstrated.
“Next, I will show you how to prime the line and prep the machine. You’ll need a new set of batteries every night…”
I lost her after ‘batteries’ and began to daydream. What should I make for dinner tonight? I’m hungry for real food. Do we have any groceries in the fridge? I bet I’ll have to get some. Hannah can help me… she loves to cook.
“Now it’s your turn,” Miss Yellow Hair said.
She took the bag and Hickman line from Jon and dropped it in my lap. I returned her look with a blank stare.
“I will probably be taking care of the IV’s for a while,” Jon said when I didn’t reply.
“Nope. You go
tta do it, too.” She crossed her arms over her ample bosom.
I fumbled my way through it and must have passed, because the next thing I knew, she was packing up and handing us a packet of directions and the name of the company that would be shipping IV bags to us every two days.
Walking back down the hall in a daze, I saw that Anne had arrived and was packing up our room. She had volunteered to stay with Andrew while Jon and I attended our exit meetings.
“Andrew, can you help me with the books? Let’s put them in the bag,” I heard her say.
I saw Andrew clutching Stuffed Frightful and his Shadow action figure in one hand while grappling for his Hunger Games trilogy. “These go with me,” he said, scooting around the other side of the room.
Such emotion was bottled up in that little room, and for some weird reason, I felt attached to it. Almost like I was leaving part of myself behind.
Andrew began talking to Shadow, contorting his arms and legs in every possible direction.
“Are you nervous about going home?” Anne asked him.
“I want to see my chickens. Grandma Cherry said they’re laying eggs. Araucanas lay blue ones. Sometimes they’re greenish, depending on their diet,” he responded.
Jon and I left for our next appointment.
“I’ll be going over Andrew’s medication list with you,” the pharmacist said. “I put them in a spreadsheet for you so you won’t get them mixed up.” He handed us a three-page chart.
I snorted. “Good Lord! Can a human swallow this many pills in one day?!”
I had an immediate flashback to my pre-transplant conference with Dr. Lewis, and the room began to swim. I let out a half giggle at the absurdity of it. Jon put his hand over mine. The quaking in my body slowed and I was able to listen as the pharmacist went over each medication and the time it was to be taken. Andrew’s medication alone would be my full time job.
Our last meeting finished four hours later. We were both numb. We were reminded over and over that we were on a short leash and that Andrew would be required to remain in seclusion for a year. We were warned about keeping him away from any possible infection and to stay within a twenty-five minute driving radius of the hospital. We were shown how to administer medications, prepare food, and bathe him with the Hickman line.
“You will need to report to the SCCA outpatient clinic at 7:30 tomorrow morning,” our nurse said as we were ready to leave.
Jon left to fill the prescriptions while Anne and I finished packing. Moments before we left, Dr. Burroughs poked her head in the door. “I know you feel overwhelmed today, but I want you to remember to take one day at a time. We will take care of tomorrow when it gets here.” She hugged me. “As for today, it’s a very good day!” she said, and left the room.
I looked around the empty room, at my son, and my friend who had organized my life for the past year. I thanked the nursing staff in the hallway, each of them I now knew by name. I stared out the window at the glassy façade of the new building next door and offered a silent prayer for all the children who would benefit from its being there.
And then I walked out the door for the last time.
Chapter 31
Jon chased his lawn mower around the lawn, eagerly cutting grass that seemed to have sprouted another two inches in only a few days. Hannah wandered aimlessly through the house while I sorted Andrew’s daily medications. Without thinking, she picked up and set down artifacts around the kitchen that included a set of car keys, a receipt for the cleaners, and a dog leash left haphazardly on the counter next to the treat jar.
“What can I do? We can’t go anywhere, and Andrew doesn’t want to do anything. I’m so bored I could die!” she said.
I watched her throw her teenage self onto the sofa and flop backwards in exasperation. Too consumed and overwhelmed by my nursing duties, I didn’t bother to answer.
“Mom, didn’t you hear me?” she called from the couch.
Glancing in to the family room, I saw my daughter’s legs pointing straight up, moving in an air ballet.
“I did. What do you want me to say? I can’t get him interested in anything, either.”
Andrew was under strict quarantine for a year. No visitors, no outings—except for the unauthorized kind, like our brief visit to the park on the way back from a medical appointment. He was not allowed contact with Frightful for at least six months, so when she caught sight of him downstairs, we all had to endure her constant tapping at the window—a beak-sized jack hammer.
I stepped over the cat and headed toward the playroom with Andrew’s 11:00 a.m. assortment of meds. Our house had become a tomb filled with nothing but pills, medical supplies, X-Box, Netflix, and the Food Network channel. Andrew had been watching the same, ten-minute segment of Dinner Impossible over and over again until it was etched into his memory. Currently he was watching the episode, “Spring Training Triangle.” No wonder Hannah was going crazy.
Hannah forcefully entered the room. “Can’t you watch something else? Why do you keep rewinding it to the lamb shoulder? You’ve already seen it a billion times!”
“I like it. See how they make the marinade?” he paused the recording with the remote, “I think the truck in the background is from Sysco. They’re a national restaurant supplier. I wonder if they will deliver here?” he rambled on without taking the time to look at her.
In a huff, Hannah left the room. I followed her, and saw Frightful sitting in the wicker chair on the porch. I knew the chicken was looking for her human friend.
I slipped out to join her. “Be patient, girl. You’ll be together soon.”
With the exception of watching Frightful roam the yard from his bedroom window, Andrew had only spoken to her using gestures through the playroom windows. Doctor’s orders.
Frightful allowed me to scoop her into my lap, probably out of desperation for human contact. “How old are you?” I asked absently, calculating the years that had passed. It occurred to me that she had been a part of our family for what felt like a lifetime. She had outlived our original clutch of chicks and now queened over six new adolescents. “You’re about nine, I think.”
I continued talking to her, wondering if all chickens lived that long. Frightful paced my lap, leaving micro-showers of dust on my legs before finding a suitable spot to sit. She tucked her scaly dinosaur legs beneath her, easing her body into an egg shape of feathers. A comforting presence settled over me.
“Thank you for showing up when Andrew needed you most,” I said. “Thank you for searching him out in the darkness, for singing to him, for being his hero, and leaving gifts in the form of beautiful sky-blue eggs. But most of all, sweet girl, thank you for loving him.”
She regarded me with hooded eyes, and spoke, steady and even.
“Cluck-cluck-cluck-cluck.”
It’s easy to love him.
Sue arrived when Frightful and I were still on the porch. I watched her walk in through the garage, knowing Andrew would be thrilled to see her.
“The stories are in my head, Sue. I need you to read them to me just like that,” I heard him say. Andrew was on the sofa, eyes closed, waiting for the words to drop out of the sky like manna. Two minutes into the story he opened one eye. “You forgot that Frightful has to carry Shadow. He’s too weak to walk.”
“You didn’t tell me that,” she said.
He let out a puff of air. “Well, he just is.”
Looking back at the pages Andrew had asked her to read, Sue adjusted the story, and without missing a beat, the pages morphed into the pictures of Andrew’s imagination. Characters floated in and out of his version of the Hunger Games, new districts were created, and hand-drawn maps were translated into words to soothe his mind and take him away from this feeling of the unfamiliar.
Andrew flashed his medical bracelet at Sue, begging her to ask him a question. He fingered the black caduceus on the front, two snakes intertwined around a short staff. “You know what this is?” he said. “It’s my superhero signal.”<
br />
Sue leaned in to get a closer look. “That’s right, I forgot. It’s pretty cool!”
He handed her a stack of tattered Judy Blume books, bracelet forgotten. “It’s time for Fudge to meet Frightful.”
While Sue thumbed through the old books, Andrew held out a folder of tissue paper drawings. “These are my drawings of Shadow. Thirty-two drawings, to be exact. They’re all the same.”
“I see Shadow has a new cape and an IV pole,” Sue said.
“Yep. And a Hickman line. See?” He pointed to a squiggly black line dangling from Shadow’s chest.
When Sue had finished looking through each one, he took the tissue drawings back, carefully sliding the stack between the pages of a Calvin & Hobbes comic book. “Let’s read that one,” he said, pointing to Fudge-a-Mania. He caught sight of me hovering in the doorway. “You can leave now, Mom. Sue and I are reading.”
Hannah found me sorting pills again in the kitchen after Sue left. “Andrew won’t do anything but study weird recipes on the Cooking Channel, and he still won’t eat. I don’t get it,” she said.
I tucked a stray hair behind her ear as she practiced her scowl. I was always surprised at how much it bothered her when her brother didn’t do things the way she would like. That was supposed to be my job.
Leaving to deliver the pills, I slipped into my studio to catch up on email. A half hour later, I smelled garlic and what I thought was rosemary wafting up the stairs. I realized I hadn’t thought about dinner yet. Grocery shopping for the required neutropenic diet was a nightmare.
Andrew couldn’t eat anything from the deli or bakery department, pickled or fermented foods, food that hadn’t been cooked, or any fruit that could not be peeled. Every perishable item had to be bagged separately, boxed items and cans in the far side of the vegetable cart. Leftovers were sketchy. The process required for storage was so daunting that I usually tossed it.
Sitting in my studio, mentally scanning the pantry, I figured I had the fixings for spaghetti. That would have to do for tonight.
The Chicken Who Saved Us Page 25