Chapter 17

We spent our days waiting for said miracle to arrive. Each morning at rounds I eagerly asked for the results of the liver biopsy. Every day they shook their heads, “Not yet.” Just when I was ready to choke someone, the results came back. The slides showed fibrosis, scarring, inflammation, and areas they referred to as inclusions—small cellular deposits in the liver tissue that weren’t normally there.

“My colleague at The Hutch (Fred Hutchinson Cancer Research Center) is suggesting we consider a bowel resection to remove the diseased parts of his colon,” Dr. Burroughs told Jon and me one afternoon in her office.

My body went cold. “But no one has ever found any indication of bowel disease,” I retorted. “What would that gain us? And what does that have to do with his liver?”

She paused, arranging her thoughts before speaking. “Andrew has a highly compromised liver. It’s clear from the biopsy. Chemotherapy alone could do irreparable damage.” She looked at us both from across the table, sizing up our response. “As for surgery, there is concern he has fibrosis of his bowel from chronic damage. It could cause problems down the road if he were to develop graft versus host disease (GVHD). But not all of us are in agreement regarding surgery. We have to look into it further.”

I didn’t know what ‘further’ meant, and I had no idea how we would explain this news to Andrew. Plus, it sounded like more delay, and I knew we had a short window of opportunity before Andrew became too weak for a transplant. To do nothing and watch him die was unthinkable. To lose him without having tried a transplant was unbearable. I was a cornered mama bear, willing to kill, or be killed, in order to save my son.

I pressed my knee into Jon’s under the table, searching for some tangible sense of support. For ten years, we’d been waging this war. I couldn’t remember the last time I felt peace in my home or head. Especially my head. My migraines were an accumulation of the angst I felt every day around my son. As a child in Sunday school, I had been taught that God would provide peace, but so far, I couldn’t find it.

“You know how we feel,” we said in unison.

“I sympathize with your feelings,” Dr. Burroughs replied kindly as she studied our faces. “I have never met another couple so unified in their decision. I understand the position you’re in, and as I said before, I will try to do everything I can to make this happen.”

After the meeting, Jon and I walked together to the parking garage, he on his way to work, me back to the hospital. Bowel surgery? Our conversation with Dr. Burroughs kept churning in my head as we picked our way through SUVs wedged into compact spaces under the SCCA building.

Jon pulled me into his arms, wrapping them around me, warm and strong. “Are we doing the right thing?” he whispered into my neck.

“I hope so.”

Standing on the hard pavement, I wondered if there was a purpose to all of this. What lesson were we supposed to learn from this misery?

While we waited for answers, Andrew continued to decline and eventually stopped asking about Frightful. In hopes of conjuring a smile, we took pictures of each hen, printed them on sheets of paper and taped them to the walls. Sue recorded more stories, and Hannah made FaceTime calls to an iPad that now sat on the windowsill, sandwiched between stacks of books. Pain had become an unwanted guest that moved into our hearts, following us throughout the day, slipping into our dreams, keeping us hostage at night.

Andrew’s ability to engage with us was gone, painkillers his only solace. I sat next to his bed for hours, my hand on his back, feeling the rise and fall of his breath as he pulled life into his lungs. I convinced myself that as long as I didn’t let go, he wouldn’t let go. When he wasn’t in bed, he resided on the cold tile floor of the bathroom with a paper-thin hospital gown loosely wrapped around his skeletal frame. We set up an oscillating fan on the back of the toilet to keep his feverish body cool enough to tolerate. The ulcers in his mouth alone had become so big and deep that they eroded a hole through the front of his lower lip. We could only imagine what the rest of his gut looked like.

With each day that passed, the screaming inside my head became louder. I went through the motions that were expected of me, even though I was completely paralyzed inside my own body. Most of my day was spent watching Andrew and the nervous residents whispering outside our door, clutching their clipboards in hopes it would somehow shield them from the pain inside our room.

One afternoon, Andrew whispered to me, “Am I dying, Mom?”

I closed my eyes, feeling my heart threaten to stop its beating. How was I to answer that question? Would the truth kill me? I crawled onto the floor next to him, took his hand in mine, and explained to him what I believed to be true. I believed that he was not alone—that he was held tightly in God’s arms, and that He would never let him go. An image came to mind, one similar to others I had seen while in the middle of the worst nights at home. With words, I painted him a picture of warriors surrounding his bed, raising their swords against an unseen adversary. I told him of the saints all over the world who were waking the heavens with the sound of their prayers on his behalf. I admitted that I didn’t know if he was dying, but God did, and he was safe.

We lay there for a while before he slipped his hand out of mine. “Okay, I just wanted to know.”

That was my first flicker of time. One of those golden moments where time simply stops and you understand that you are part of something much bigger than yourself. In that moment, I understood heaven was not a place with golden streets and pearly white gates. It was here and now, and somewhere behind the veil I couldn’t quite reach. Heaven was in the room with my dying son, and it was a part of us both. I saw those mighty warriors I spoke of—surrounding his bed, hovering over his body, protecting him from harm. I had witnessed something supernatural, and I accepted it without a shred of doubt. And in that split second, I realized that it did not matter how long he lived on this earth. He would forever be okay. He was loved. And then I felt peace. Something I had been groping and clawing for since the moment he was born.

That feeling lasted one fiery moment, a breath that caressed me like a lover, leaving these words etched onto my heart: All is well. It always has been. It always will be.

Later that afternoon, a social worker stopped by.

“You should have a plan in place,” she said. “It alleviates any extra stress if the time comes where you have to make some difficult choices.”

What she didn’t say was: You should prepare for your son to die. The feeling of peace I experienced earlier vanished when she shoved reality in my face. I had come to peace with ‘Death’ as a concept, but not with Andrew dying. My son was lying in bed, emaciated and on the brink of death, yet I wasn’t ready to let him go yet. I wasn’t ready to make any other plan besides ‘survive.’

She eyed me carefully. “You and Jon need a break. Can someone stay here with Andrew for the night?”

And just leave him? I shook my head, then nodded as tears pricked at and started to fall from the corners of my eyes. He had to make it. Julie reminded me every time we talked on the phone that Andrew was strong, that he had a purpose in this life and had not yet begun to fulfill it. It always left me feeling somehow inadequate, and maybe a little angry that she was so confident, but today, I clung to those words, forcing myself to believe them.

At four o’clock, my dad arrived with his C-Pap snore machine in one hand and his briefcase in the other. “Hi Kris, your mother said I am here to spend the night with Andrew.”

I grinned inwardly at the thought of my mom informing him where he was sleeping. “Sounds like you’re on your way home to have dinner with Jon and Hannah. Take your time in the morning. I’ll be here.”

His presence was a comfort to my soul. Like my mom, my dad is full of energy, has a fantastic sense of humor, and is always up for a good prank. But where my mom shows her love in the doing, my dad shows it in the being. He is a gentle and kind man who ponders things deeply and sometimes struggles with an oversensitive soul. I think I am most like him.

I gathered my things to leave, imagining his six-foot-three, lanky frame hanging over the end of the short little fold-out bed, and loved him all the more for being willing to stay. I noted that he had not brought a change of clothes with him. Perhaps there was a toothbrush stashed in his briefcase? Hugging him tightly, I thanked him before closing the door behind me.

On the way home, I wrestled with my conversation with Andrew. Am I dying, Mom? Had he understood my answer? His response had been calm and mature, possessing an assurance that was surprising for an eighteen-year-old, let alone a child with autism.

When I got home, Jon and Hannah were crashed on the sofa watching a rerun of Cheers on Netflix. I tried to keep my composure for Hannah’s sake, but when Jon asked me about the afternoon, the tears that had been threatening all day came out in a torrent of emotion.

Hannah’s face fell. “I’m outta here,” she said, scooping Charlie into her arms and slipping from the room.

“That bad?” Jon asked.

“My dad has no idea what it’s like.”

“He’ll be fine. He’s stronger than you think.”

I wasn’t so sure. The nights were the worst—the ‘witching hours’, we called them—when the pain was the most exaggerated and we were sure the darkness would overcome us before the light of day came to save us.

When we went to bed, I noticed for the first time the bare trees outside our windows. December had arrived and I couldn’t recall the leaves changing in the fall. Frost was splintering its way across the skylights and moonlight bathed the room, leaving elongated shadows of the evergreen trees across the carpet. At another time in my life it might have been romantic, but tonight it made me feel uneasy.

As Jon and I crawled into bed together for the first time in weeks, I tried to think of something to say. Where would I begin? How would I tell him about my day, what Andrew had asked? I stared at the ceiling, not daring to meet his eyes. The sound of our breathing matched one another, deep and strangled—the sound of unshed tears.

Jon broke the silence, “If transplant isn’t an option, I don’t think I can bear to see him in such pain anymore. It seems inhumane,” he said, staring through the skylights at the few stars that could be seen. “I told Dr. Burroughs today that I wished it was okay to put people out of their misery like we do with our beloved animals. She was shocked I would admit that to her.”

He turned to face me. I caught my breath, shocked as much as the doctor. I couldn’t believe he was bold enough to say the words, or to even think them, for that matter. That thought was locked too deep in my heart. I knew I would never be able to look at it.

I rolled into his arms, pushing my nose and forehead against his, his eyes filling my vision. Watery and blue. I stayed that way for a long time, wondering what had happened to us—senior class sweethearts, best friends, lovers. Had we gotten lost? By necessity, we had become an extreme-parenting machine, living from one life-altering decision to the next. There had been little room for lighthearted play, or dates, or sex, for that matter. I wondered if we would ever get that part of ourselves back.

I remembered that a teacher friend once told me that when she observed parents of special needs kids, there was usually one parent who just accepted it and moved on. The other would go digging, trying out every therapy available, looking under every stone for anything to make the child’s life just a little bit easier to bear. I thought about that for a long time. It gave me permission to accept the ways that Jon and I were different.

“I pray for mercy every moment of every day,” I whispered into the crook of his neck.

I felt hot tears in my hair and realized they were coming from Jon. Curling tightly behind me, he held me while we sunk into our grief. Lying perfectly still with my eyes closed, I listened for each breath, a reassurance that Jon would still be there in the morning. Somewhere during the night, I sunk into another one of my Technicolor dreams—a dream so vivid I could taste and smell and feel the ground beneath my feet.

I watched as a mother dropped her child at the foot of a great man. She turned away, walked a few paces, then turned to scoop up his limp body, carrying her burden further away. Again she came into view, this time, carefully placing the child at the feet of a wise man. She kissed the child’s hand, then left, only to come back a short while later to carry him away again. Variations of this scene played over and over in my dream until at last I saw the woman turn her head to face me. I recognized her. She beckoned for me to come to her, and I helped carry her burden. This time she put the child into the arms of a wounded man—a man in whose face she could see all the burdens of the world. The woman walked away. The woman was me.

I woke up with Jon’s arms still around me. Through the trees, I could see the first slices of dawn, a blush of pink, the stars having faded away. The witching hour had passed, we had survived another day. Somehow, I had given myself permission to let go.