The crowd roared. Zach walked on first, raising his hands toward the crowd. Sammy followed, wearing a black daisy T-shirt, red velvet shorts, and black tights. Reed wore a black ruffled tuxedo shirt with suspenders. They looked like a seasoned band. They took the stage with confidence, natural and relaxed, like they belonged there. It was then that I finally realized—they did belong there.
They played a full set, Sammy at the center microphone carrying most of the vocals, with Zach to her right on guitar and Reed on her left, moving between the cajón and drum kit. They played “Blueberries,” “Sandcastles,” “Coffee Cup,” and “Fix Me Up.” Zach’s voice was noticeably raspier than it had been one month earlier when they recorded their EP. I didn’t know if that was a symptom of the disease’s effect on his lungs, or the result of talking to friends and fans for two hours before hitting the stage. I tried not to think about it too much.
Sammy announced that their last song would be “Star Hopping,” which, she joked, “would be happier and shorter than ‘Fix Me Up.’ ” It was the perfect way to close, reminding us all that it was okay to “stand there waiting, wishing, wanting to take off and go star hopping.” Zach joined in with “start the countdown: three, two, one, let’s go.”
With that, the three friends waved good-bye under the pink lights, and Vicci Martinez took the stage with a rousing set. Afterward, she invited the kids back to the stage to join her for the singing of the Lumineers’ song “Flowers in Your Hair,” with Zach on lead vocals and Vicci and Sammy pulling in the harmonies.
Finally, all the bands that had played throughout the night came onstage to join Zach in singing “Clouds.” Kevin Bowe added lead guitar, as did my brother Luke. The whole audience sang along, and the song stretched through several choruses before confetti fell from the ceiling. It was the perfect ending to a perfect and magical night. I watched from the balcony as Zach held his arms up in triumphant gratitude and mouthed the words thank you to the adoring audience, some of whom had fallen asleep in their mothers’ arms, others who had tears streaming down their faces.
There wasn’t a prouder mom in the whole state, maybe the whole country. Make that the world.
The concert was reviewed the next week in the Minneapolis weekly City Pages:
Songwriting has long been a tool to express the aches and worries of difficult living—and the examples of artists who met early and tragic ends, like Elliott Smith or Jeff Buckley, are numerous. The difference for Sobiech, however, is he has a disease beyond his control, but his mind is sharp, and the situation completely in his comprehension. So, with the straight-ahead lyrics of Fix Me Up (“I know you’re in pain, just please don’t show it”) and Coffee Cup (“I would like to know myself before I have to die”), he can pair the deepest issues of the human condition with the light-hearted arrangements of youth. Trying to pack a lifetime’s worth of expression into a short time is a tall order, but he’s doing it.*
* Reed Fischer, “Zach Sobiech at Varsity Theater,” February 16, 2013, http://blogs.citypages.com/gimmenoise/2013/02/zach_sobiech_varsity_theater_2013.php?page=2.
Thirty-One
February 2013
ONE WEEK AFTER THE VARSITY CONCERT, ZACH CAME INTO THE porch where I was lying on the couch, watching mindless television and relaxing. Daisy slept in her usual spot, perched on the back of the love seat. The light from the fireplace flickered on the ceiling, its warmth permeating the room. It was late Sunday night, and I was unwinding from the busy weekend. Zach did this often when he had something on his mind, coming to me in the quiet of the evening, so I sat up to hear what he had to say.
“I have a weird thing going on here, on my left side.” He pointed to the place where his crutch would rest, just under his arm and in his rib cage.
“What kind of weird? Is there pain?” My voice was steady, but my heart rate began to rise.
“I don’t know,” he said. “It’s just weird.” Over the years, Zach tried many times to find the words to describe how it felt to have a beast grow inside of him. It was frustrating for him because he knew it never translated well.
“Do you think it’s a tumor?” I asked. I’d been expecting this, but I still didn’t want to hear it. It was so easy to think we had more time when he seemed so well and was able to go to basketball games, record music with Sammy, and be normal.
“Yeah,” he answered in a matter-of-fact tone. He’d been fighting this war for a long time. He knew.
Nine months earlier I’d been given a health-care directive form to fill out with Zach. At the time, I had glanced over it and promptly stuffed it in the coffee table drawer. I hadn’t been ready to discuss the real stuff back then, the details of how the end would be. But I had given myself permission to think about them, and I did almost every night right before I went to bed. I would put my iPod on the “Sad Songs” playlist and cry as I let my mind wander through the scenes of Zach’s death and funeral, almost like watching a play being acted out. It had become a part of my nighttime routine. But I couldn’t talk about it, especially not with Zach.
It felt too much like we were giving up.
But time had passed, and a lot had changed as the months went by. New therapies had been tried and failed. We had done all we could do. The future had gotten real in a big, big hurry, and now the details needed to be talked about and written down.
Zach and I sat in silence for a moment. He knew what was coming and waited patiently for me to gather the strength.
“I think we need to start talking about how you want things to be at the end. And I think we need to start talking about your funeral,” I said with as much practical resolution as I could muster while I pulled the health-care directive form out of the coffee table drawer.
He nodded his head slightly as he rocked slowly back and forth in the rocking chair, no trace of emotion betraying what went on in his head.
I looked at him hard and tried desperately to imprint his image into my brain: the smooth face with a few spots of missed stubble, the round green eyes, the dark blond thinning hair from years of chemo, the gray jeans that were too short and too saggy, the well-loved brown plaid shirt, the wool socks that he got for Christmas.
He draped himself in the black and maroon comforter he’d brought up with him from his bedroom. He’d had that blanket since the seventh grade and had taken it to the hospital with him for every stay. It would go in the wash after each visit to rid it of the hospital smell.
I locked onto his eyes. Those big, beautiful eyes that took my breath away the first time he opened them. The desperation of deep, heartbreaking sadness crept from my chest to my clenched jaw. I fought the tears that forced their way out. They wouldn’t be stopped this time.
“I don’t want to do this,” I croaked in that awful crying voice nobody likes to hear. “I don’t want to say good-bye.”
I leaned forward and rested my forehead on my fingertips. I couldn’t burden him with my tears. He continued to rock slowly, the steady click of the chair keeping time with the clock on the wall. He didn’t divert his eyes, but he didn’t speak either. He knew it would only make things worse.
He doesn’t want to cry, I thought. He needs to be strong. It was one of the struggles of parenting a dying child. How to keep the balance between showing enough emotion, but not so much that my grief became a burden. He had enough of his own.
I recovered my composure and grabbed a tissue from the Kleenex box on the end table. I picked up the form and took a deep breath.
Zach moved from the rocking chair to the floor, rested his head on the couch seat, and stared at the ceiling. Daisy hopped down from her perch, her dog tags clinking as she trotted across the floor and crawled into Zach’s lap.
I skimmed through the questions on the paper, skipped over the legalese, and jumped to the pertinent questions.
“How and where do you want to die?” I read off the sheet.
“Skydiving and Florida.” He lifted his head and turned to me with a smug look on his face,
one bald eyebrow cocked. He was bored and it was late.
“Funny. Seriously. I need to know. Do you want to be at home or are you okay with dying at the hospital? We need to think about this stuff.” I felt like I was in two separate worlds: Practical-Mom World and My-Son-Is-Dying-and-I-Don’t-Want-To-Do-This World. That happens to mothers of dying children a lot.
“I’m fine with being in the hospital. It’s practically a second home,” he finally answered as he rubbed a hand over his face. “I want to be alert for as long as possible,” he continued. “I don’t want to be doped up on a bunch of pain meds. I want to be awake enough to say a proper good-bye.”
I set the sheet of paper down on my lap and closed my eyes for a moment. Oh, this boy. This boy who battled the pain of a vicious disease for over three years and who should be tired and ready for whatever comfort medicine could offer had chosen the hard way. He would battle to the end, just to stay close to us.
I didn’t question his decision. He knew. He’d seen the scan. He’d felt the tumor. He’d made a truce: cancer could take his life, but he would claim every minute he had left.
We continued.
“CPR?”
“No.”
“Intubation or ventilation?”
“No.”
“Feeding tube?”
“No.”
“Organ and tissue donation?”
“Yes.”
“Have you thought about your funeral?” I asked.
He yawned and looked up at the clock. He wanted to get to bed, but I wanted to press on. I wanted to get it done before it was too late. Saving it for another day was no longer an option. Another day was here.
“I want bagpipes,” he said.
“Bagpipes? Really?” He was neither Scottish nor old, both prerequisites for having bagpipes at a funeral in my book.
“They have a sound that reaches the soul,” he explained. “I don’t want Psalm 23. It’s overdone. And I want the gospel reading to be the one about the talents. I like that gospel. It makes sense to me.”
He went on to tell me that he wanted to wear a shirt and tie with his suit vest, but no jacket. A jacket would be too “uptight” looking. Everything else he would leave to me.
We wrapped up the conversation and moved to normal talk about normal life stuff. I don’t remember what it was, maybe something about his day or about a television show he’d watched, or some new fact that he’d learned on the Science Channel. I remember thinking how strange it was to live these parallel lives of living and dying, and I marveled at the grace we’d been given to do it.
Zach set Daisy on the floor, and we both laughed as she trotted to her crate, rooted around, and tucked herself in bed so only her nose peaked out from the blanket. His laugh stirred up a cough. My ears perked up to listen for any rattles or wheezes as if the sound could tell me how much time he had left.
“Relax, Mom. It’s just a tickle in my throat. I’m not quite there yet.” He looked down at me, a smirk on his lips.
We said good night, and I reached up and placed my hands on his cheeks.
“I love you.” I kissed his forehead as I stood on my tiptoes. That phrase we had said without much thought for so many years was now packed with meaning. It meant, I am proud of you, I will miss you, and I will never, ever forget you. I love you.
Zach hobbled down the stairs to his bedroom, his blanket dragging behind him. I made my way up to my own bedroom and quietly crawled into bed next to Rob, who was already in a deep sleep. I laid my head on the cool pillow and stared at the wall as I replayed in my head the conversation I’d just had. I thought about the gospel of the talents. It was so Zach. Of course he would want to leave people with the message that God had given them something precious and not to squander it like a fool. He’d had a taste of what could happen if you tapped into the gifts God had given, and he wanted everyone to experience the same.
And the bagpipes! Ah, Zach. My dear boy always did love quirky pomp. If it were allowed, I was certain he would have loved to be sent down the St. Croix River on a great floating pyre. In his shirt, tie, and vest—no suit coat, because that would be over the top.
I smiled to myself as hot tears welled up and spilled out onto the pillow, soaking it. Oh, I would miss him.
Exhausted, I reached up, turned the lamp off, and flipped the tear-soaked pillow over. It would be a beautiful funeral. We just had to get through the dying part.
IT TOOK ME A COUPLE OF WEEKS TO FORCE MYSELF TO TRANSCRIBE the notes I had taken to fill out the health-care directive. To write it all out in permanent ink on a legally binding document was just . . . well . . . hard. I didn’t want to do it, but it had to be done. There were people who needed to know how we wanted things to happen. In particular, our nurse practitioner, Melissa. She had periodically over the course of the last several months asked if we’d had a chance to look over the form. Melissa had been with us from the beginning, from that first hospital stay when Zach was so miserable. She had allowed herself to go beyond the normal confines of the “professional relationship” and become our friend. She knew how to talk to Zach, and Zach trusted her. She laughed with us, and she wasn’t afraid to cry.
When I finally gave the form to her, Melissa was relieved to have the document in hand. It would serve as a guide for Zach’s care. She had always wanted him to be involved in the decision making, and it was especially true now, as he was nearing the end.
Zach got progressively worse after our conversation. He coughed more, he lost weight, and he started to feel more intense pain in his hip. It kept him up at night, and he wasn’t able to go out much anymore. I called Melissa a few weeks later to inquire about pain medications; he needed something more powerful than what he was currently using. She asked if I would like to begin palliative care, which specialized in pain management. The team would be able to set up a regimen that would be preplanned and accessible. As Zach’s cancer grew and his body demanded more medication to achieve the same amount of control, we would have standing orders to bump up the dose without having to wait.
In other words, she was asking if I wanted hospice care. It was another declaration of the end. I told her that we would discuss it, all the while feeling like another piece of Zach was being ripped away.
Melissa and I talked in more detail about what Zach’s wishes were, especially about the pain medications and how they would affect his alertness. He’d made it clear over and over that he didn’t want to take a medicine that would make him too sleepy or foggy. He wanted to be able to enjoy his friends when they came over, as they still did on a near-daily basis. He didn’t have time to sleep all day.
We also talked about what happens at the end and what I should expect after he died, whether that was at home or at the hospital. She told me that she would call the county coroner’s office to tell them Zach’s was an expected death so we wouldn’t need a medical examiner to come to the house when he died. My heart ached, and I felt it break under the pressure. Those blasted sobs made their way out again, from my tightened chest, up through my jaw. I bit down on my bottom lip—a tactic I’d only read about until cancer entered our lives. It used to annoy me to read about a person doing it. Really? Like biting your lip would help. Turns out it does. The tears needed to wait. This was practical stuff that had to be done.
“So,” Melissa said, “I see that you have checked the box for tissue and organ donation.” She spoke slowly with a touch of airiness in her voice that indicated she knew she was treading into fragile territory. Melissa was a mother too. Her first son was born just months before Zach’s diagnosis. Her son and Zach’s cancer grew up together.
“Yes,” I said as I held the phone to my ear. I sat on the oversized chair in the living room, the afternoon sunshine filling the room. I had been enjoying the afternoon curled up with a book and a hot cup of tea. It had been a gloomy couple of weeks, cloudy and cold. We were desperate for the warmth and colors of spring, but it hadn’t made its way north to us yet.
&nb
sp; Melissa continued, “I’m not sure Zach’s organs will be viable for donation, given his disease and the chemotherapies he’s had. And I’m assuming you don’t want to donate his body to be used for science . . . by med students,” she asked in a tentative voice.
“No,” I responded resolutely. The sun no longer provided the warmth it had just moments earlier.
“The only other thing that they would likely take would be his eyes,” she said.
The image that filled my mind was a moment almost eighteen years earlier. I held Zach in my arms for the first time, and he opened his eyes. It took what seemed like forever for that little baby to lift his lids—his eyes, they were so huge! I gasped, then chuckled as I watched him try to focus. A little frown formed on his face. It was such a big and bright world, and he didn’t seem quite ready to be part of it.
The next image that flooded my mind was of me, standing over a casket and looking down at Zach knowing those beautiful eyes were gone.
I couldn’t do it. I couldn’t bear the thought. Those eyes were too precious to me. They were mine.
Melissa had already moved on to another topic, but I interrupted her, saying, “No. Not the eyes. I can’t give up his eyes.” Tears ran freely down my face. No amount of lip biting was going to stop them. Melissa could hear the tears in my voice so she gently ended the conversation. My tea had gone cold and so had the room, the sun hidden behind a cloud. I walked into the kitchen and began to clear the clutter from the table to make room for a meal that would be delivered by one of the hundreds of people who had taken care of us these past three years. As I poured the now-cold tea in the sink, I looked out the window at the snow that just wouldn’t go away.
Laughter rose from the basement where Zach and Amy spent each afternoon. I wiped away the tears and smiled at the sound.
Fly a Little Higher Page 23