Chapter 25

Julie glanced at my crumpled form in the passenger seat of her rental car. My face was pressed against the cold window with the air conditioning blowing on my face.

“Are you okay?” she asked.

“I don’t know. I have a screaming headache,” I replied, scrubbing at my cheeks.

Julie took my hand and we drove the rest of the way home in silence. I was secretly hoping Hannah would be fast asleep so I could stumble into my bed and sink into oblivion. But as we pulled in the drive just after midnight, the house was blazing with lights. My sister met us in the driveway in her stocking feet.

“Hi Kris! Hi Julie! How’d it go?” she asked, rubbing at her arms to keep warm.

Jennifer and her husband had taken Hannah home from the hospital an hour before the infusion began. Watching my brother-in-law lift her into the car, I felt more assured when I saw a tinge of pink creeping back in to her face.

“Hannah has been pretty uncomfortable all evening, but I think she’s feeling a little better now. She’s in bed, hopefully sleeping,” she said.

“Thank you, Jen,” I said, meaning every word, but having no energy to elaborate.

I dropped my coat and bag on the kitchen counter, kicked off my shoes, and shuffled in to the living room.

“When did they begin the transplant?” Jennifer asked, trailing behind.

I slumped down on the couch to lean against the back cushions. My head was throbbing. I was in no mood for conversation, but I knew my sister had been waiting to hear how things had gone at the hospital.

“They started the infusion about two hours ago,” Julie told her, “and they expect it will continue all night, providing his body tolerates it.”

Neither of us mentioned the crash cart or that a team of nurses was hovering around the room like bees. There were still people on his medical team who questioned whether or not he would be strong enough to make it through the night. Jon and I were confident, though. We both felt we were doing the right thing, moving forward with a certainty that was either divine or desperation.

Julie finished filling in my sister on the details of the day until she was satisfied, then made a beeline for my bed and was asleep when her head hit the pillow. Dumping my grimy clothes on the laundry room floor, I fumbled through a bin of clean clothes and came up with one of Jon’s old t-shirts. The fabric was soft and worn, smelling faintly of the man I loved so much. I crawled into it.

I navigated the stairs in the dark and found my way to Hannah’s room. Scooting into the far side of her double bed, I allowed my bones to settle into the mattress while my mind whirled through the events of the last twenty-four hours. I stared out Hannah’s window, knowing that on the far side of the yard, the chickens were roosting in the coop, squeezed next to one another, tail to beak in a group hug of warmth. I gazed into the blackness, searching for the darkened outline of the house across the street, wondering if my neighbors suffered with burdens I would never know about. Rolling towards Hannah, I closed my eyes and uttered a desperate prayer: Lord, let me do right by these children. Don’t let me screw up. Then I recited for the millionth time what had become my mantra: For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

Yes. Hope. A future. I would hold on to that with everything I had.

Hannah shifted under the covers and circled an arm over me. “How is brother?” she asked, her voice raspy and weak.

“He’s doing well, sweetheart. He told the nurse he was getting his powers back.”

After a minute, she whispered, “I love my brother.”

“I know you do.” I kissed her warm cheeks and left her to sleep.

It was still early when the Waste Management truck screeched to a stop in front of my neighbor’s house and began its clunky ballet. Next to me, Julie rolled over, taking the remaining scrap of comforter with her. Carefully rearranging the blanket, I turned to my friend occupying the space where Jon usually slept. She cracked an eye, smiled, and immediately fell back into sleep. Flopping onto my back, I allowed my mind to race through the past thirty hours. It was impossible to grasp everything that had happened, my brain blended it all together in a menagerie of color and sound and emotion. Julie had remained a steady force through it all, and I wondered if I would ever be able to repay her in kind.

Leaving Julie to sleep, I quietly slipped into Hannah’s room across the hall. She was in her signature sleeping position: face down, neck and head wrapped in her quilt, bare legs hanging over the edge of the bed. Charlie, who had arranged his ample feline self at the foot of her bed, was purring loudly. Hannah whimpered and rolled over.

“I hurt, Mom. I feel like I was kicked by a horse.”

I went rummaging through the bathroom clutter to find the pain medication the hospital had sent home. “This should take the edge off,” I said, handing her the pills and a glass of water.

We lay together, silent, gazing at the ceiling of her room. She still had rainbow stickers and glow-in-the dark stars stuck all over the sloped ceiling where she could reach. A construction paper mobile hung from an old hook that once housed a lace canopy from a time when she considered becoming a princess.

“You know, I think I’m done with a pink room,” she said, breaking the silence.

I turned to look at her, her pale face still puffy from yesterday’s surgery. I watched her eyes take in the little girl’s room—the silky bows at the top of a mirror, a quilted picture of a fairy, and a corner cabinet filled with stuffed bunnies.

“What are you envisioning?” I asked.

Her words came out slowly, deliberately, as a picture formed in her mind. “I really like purple. And maybe some black. I’d like to do something creative around my windows. Do you think we could make some curtains?”

We imagined all the possibilities for something new. I stayed until the drugs drew her back into sleep, realizing for the first time in two years that I was thinking about something beyond the immediate crisis. We had made plans, and in a tiny flash of understanding, I realized we were on the other side—of something. In a breath of gratitude, an imperceptible shift occurred, a seismic rumble that left open a great chasm of possibility. In my imagination, I threw my arms in the air, shouting the words Andrew had said the night before: “Bring It On!”

Jon was more than ready to leave when I walked into the hospital room later that morning. The night had been uneventful, the crash cart forgotten and unattended in the hall, used yellow isolation gowns stuffed in the hamper at its side. A good sign.

Tossing my overnight bag in the corner, I chucked my clogs, stripped the ponytail elastic from my hair, and collapsed onto the fold-out bed as Jon filled me in on the night’s events. The marrow infusion took ten hours, with no adverse reactions. Andrew had been comfortable. He would remain sedated for the next few days to gather strength for the weeks to come.

“We’re going to be okay. We’re in a new place now,” I told Jon through closed eyes. The bed seemed to have heavy arms, drawing me into its depths, lulling me in to a coma-like state.

Jon leaned down to kiss my closed eyelids. “Yes, we are. Good thing we can swim.”

I smiled at his reference. We were free-falling in Jon’s imaginary waterfall and I had finally stopped trying to turn tail and swim upstream.

After Jon left for work, I sat vigil with Andrew while his blood counts rapidly dropped. I couldn’t concentrate to read, music felt like a cheese grater in my brain, and visitors were discouraged. I didn’t feel like talking anyway. Mostly I just sat. And was still. I stared at the colorful posters I had made for Andrew: “Be Strong! Be Courageous!” and I realized they were really for me.

The transplant poster, made by his nurses the night before, hung proudly on our door, symbolizing to our small world that we had joined the ranks of a new tribe. The looming images of his heroes spoke his words, his truth, and I was struck by how poignant his sign was. Andrew had chosen three heroes to represent his external power; power that gave him the strength to withstand all that was happening to him: Katniss Everdeen, Shadow, and Iron Man. Each played an important role in his made-up stories with Sue, and represented the powers Andrew needed as he faced each new horrifying challenge. Katniss, like Andrew, had to be brave—to look death in the face and defy it. Shadow had lost his best friend, much like Andrew was missing Frightful, and channeled his grief into superpowers that he used to conquer evil. Iron Man had been transformed through an electronic port in his chest that kept him alive and gave him superhuman strength.

Even though Frightful wasn’t there, she was his best friend, his internal power, his comfort, the one who spoke to his soul. It was an amazing team. At the top of Andrew’s poster, a comic-style word bubble read, “Bring It On!”

Until I had time to study that poster, it seemed like a random grouping of characters from his favorite tales. I had overlooked the meanings of their stories.

“Is Shadow still scared?” I heard Sue ask Andrew one day. I was grateful Sue understood that it was too terrifying for Andrew to face the pain as himself. He needed Shadow to carry the burden of his fear in order to cope.

“Yeah. He thinks he could die. But Katniss is there, and she is helping him,” Andrew told his only friend who was not a doctor or worried family member.

“What does she do to help?”

“She is brave. She won’t let anyone hurt him. She’ll nuke them first,” Andrew replied.

Sue sat with Andrew that afternoon, weaving their dialogue into stories that gave him the power, strength, and courage he needed to survive.

During that first week, Andrew was examined every hour. Blood was taken each morning and evening to determine how well his body was tolerating the bombardment of poisons to which it had been subjected. We were banking his life on the belief that his sister’s cells were doing their silent work in there. While Andrew and Sue created new stories of heroism, I imagined those new cells with Iron Man’s armor, blasting through the debris left by the radiation and chemotherapy, waging war on the mutant cells that had warred against my son since birth.

In the language of transplant, each day was carefully numbered from Day 1 to Day 100. After Day 100, they would reduce some of the immunosuppressant medications in anticipation of his rising cell count. The Hickman line could be removed around that time, and maybe we would be allowed to venture past his twenty-mile limit from the hospital. But regardless of what things looked like on Day 100, Andrew would still be required to remain sequestered at home for an entire year.

On Day 4, Andrew’s mucosal lining began sloughing off in his mouth and gut as cells began dying too quickly—a wickedly nasty effect of the intense radiation. The only thing we could do was adjust his pain medication and suction his mouth to keep his airway clear and wait for it to slow. He was in misery.

On Day 8, I woke up to the realization that I had had my last fight with the fold-out chair.

“That’s it! No more!” I shouted to the Naugahyde beast. My back was constantly in a spasm and my hip mashed into the wooden seat support no matter which way I turned. I lumped the scratchy bedding onto the seat, folded it in half, and drug the makeshift bed to the nurses’ station in the hall. Stomping back to our room like an angry child, I fired out a message on my blog: “Need something to sleep on. Nasty foldout chair bites back!”

Within the hour, Anne called. “I have someone dropping off an REI camp cot this afternoon.” Knowing what I was thinking, she quickly added, “They swear it’s comfortable.”

I was willing to try anything. When I crawled into bed that night with a new cot, foam topper, and a silky soft blanket, I had a smile on my face. I sent a text to Anne: If you want to be my permanent Life Coordinator, you’re hired! Thank you!

The next morning, the loudspeaker interrupted my boredom with its daily announcements. I silently cursed it for bringing me back to reality. I’d been staring out the window at the construction site for nearly an hour, enjoying my temporary escape.

The nurse popped her head into the room. “There’s a group of moms in the playroom area with the knitting gals. You might enjoy visiting with them.”

“Thanks, but I don’t knit,” I replied.

I wondered why she thought I did. The last time I wrestled with a pair of knitting needles was with my favorite neighbor lady when I was eight. She taught me how to knit a poncho, which was all the rage at the time. I have since professed it a very boring hobby.

“It might be nice to get to know some of the ladies,” she persisted.

I had no energy to contemplate being social, so I nodded politely and waited for her to leave. After a while, curiosity forced me into the common room, where I met the most bedraggled and haggard group of women I had ever seen. It was clear most had slept in their clothes and that a tangled ponytail was the popular hairstyle. Showers were optional and makeup unheard of. Their eyes were tired and worried and full of hidden fear, but their faces lit up with the delight of being together. They were my people.

Knit For Life came to the ward every other week to spend time with the moms in one of the open playrooms. They arrived with bins of yarn, needles, and an abundance of patience for teaching this assorted group of bone-weary women to knit.

“Do you know how to knit?” the instructor asked when she spied me lingering in the doorway.

“I’m not sure. When I was in grade school, my neighbor was a knitter and she spent a summer teaching me the basics. It’s been so long, I’m sure I don’t remember.”

“Pick out some yarn you like and I’ll give you a lesson,” she said with a genuine smile.

Bins and bins of beautiful colorful sparkly yarn were offered to me. I caressed each skein while ideas and designs zoomed through my head as I planned what I wanted to make.

Fifteen minutes later, she came back. “Have you made up your mind?”

Embarrassed, I looked at the pile of colorful balls I had hoarded in front of me. “I can’t quite decide which ones I want.”

“You can have as many as you like. Why don’t you sit here and I’ll get you started making a scarf like the other gals?”

“Actually, I was thinking of a hat,” I told her.

I described what I had envisioned. Although she looked skeptical, she didn’t discourage me. Handing me a set of circular needles, she carefully taught me how to cast-on stitches to begin, and showed me the difference between a knit and a purl stitch. My grade school lessons came flooding back as I remembered the gentle hands of my neighbor holding my awkward eight-year-old hands tightly in hers, directing the needles to tie their intricate knots. I concentrated on my new needles with the same expression of delight as my new companions. I listened to the women’s voices, woven together in a disorganized song of relief. We shared our stories while twisting yarn into a tangled shape we could hold onto while our lifeboats teetered on the waves. It was like God had taken the deepest part of our sorrow and knit it into a pattern of hope. The beauty of it all left me with a feeling of joy.

Hours later, while Andrew slept, Stuffed Frightful and I practiced the art of being still. I focused on my belief that God was the great art director—knitting the new cells into Andrew’s weary body. I also finished my first hat.

On Day 10, Andrew’s immune system was wiped out.

“He is vulnerable,” Dr. Burroughs said, “An infection would be bad.”

His organs—especially his liver—were closely monitored. He received his first blood transfusion. I closed my eyes, becoming as small as the cells, entering the battle on his behalf. And I prayed. Constantly. To the ears of the wounded man I had given my son’s life to:

Lord, take my hand. Guide me on this narrow path. Don’t let me fall. Be my light when the way is dark, full of questions and fear. Help me understand your ways so I can know peace. Don’t let me give into despair. Give me rest in the chaos. Bring joy to my spirit. Allow me to comfort Andrew as I walk with him through this hell. And Lord, if this illness takes him, then please promise me you are real and we will meet again.

To diffuse my growing anxiety, I was knitting hats as fast as I could get my hands on new yarn. While my fingers worked, I obsessed over my bold prayer: If this illness takes him...It was the first time I had actually said those words and I thought maybe I could survive that. As I finished each hat, I thanked it for keeping me occupied. Some hats I kept, while others found their way to the box at the front nurses’ station where people could donate small gifts for the patients.

During this time, I learned that waiting was about being still. Waiting is not in anticipation of, but rather a deep inner stillness and acceptance, of what is occurring right now. Knitting became my waiting, my way to be entirely present. It was a time when the only thing that mattered was the next purl stitch, and then the next and the next.

“When will you make me a hat?” insisted Julie during one of our daily phone conversations.

“As if you would wear it in the Arizona desert!” I said.

“That’s not the point and you know it,” she shot back.

The truth was, they were really quite ugly. A mishmash of colors, textures, and yarn, the stitches reflecting my moods, sometimes tight and precise, more often uneven, with dropped stitches here and there.

Julie’s phone calls were my escape to the outside world. After reassuring her that Andrew was okay, she described to me in detail the latest novel she was reading. We laughed and talked about all the inconsequential things in daily life. In my mind, I was with her in the sunshine.

“I’d like to invite Hannah to stay with us for a while,” she said one afternoon. “What do you think? Do you think she’d be willing to come?”

“She would love it!” I said, knowing I would have to nudge her out of the house for her own good.

Two days later, Hannah was on a flight to Arizona. I hoped she would emerge from her shell enough to enjoy the change of scenery, and knew Julie’s family would be there to support her and dote on her in a way that Jon and I could not.