Fly a Little Higher

by Laura Sobiech

  Mitch wasn’t afraid to explore spiritual things either. Though he did not consider himself a person of faith, he welcomed hearing about Zach’s perspective and was open to engaging in dialogue about spiritual matters.

  Another mutual love they had was music. Mitch played cello, and it was not unusual for he and “Ella” to show up at the door together. He and Zach would spend hours together in our family room collaborating on different pieces.

  While Zach had several close friends who spent time with him and treated him like a normal kid, Zach found Mitch’s approach of openly talking about his cancer refreshing. He related to Zach as more than a kid who was sick with cancer; he saw how much more interesting Zach was because of it, and in turn Zach was able to be just Zach.

  Mitch provided a springboard for Zach to jump back into normal life.

  I DETERMINED THAT I WOULDN’T THINK ABOUT SCANS UNTIL THE month they were scheduled. When November hit, the familiar stress began to creep back in. But the scans were clear! Another three months of bliss were ours, and we got to have our Thanksgiving, Christmas, and New Year’s without cancer!

  A year earlier, not long after Zach had been diagnosed, Rob and I lay in bed one night and talked about what was ahead of us. I told him that when we were through with the horrible year the doctor had warned us we would have to endure, I wanted to take the family to Mexico for a relaxing vacation on the beach. Now that Zach had a clear scan and three more months until we needed to worry about cancer again, it was time to take a family trip.

  In January, we took the kids to Mexico and spent a week of leisure on the beach, swimming in underground cave pools and taking a zip line through the tropical forest. It was glorious. I watched Zach and Rob play volleyball with a group of other resort patrons in one of the several pools. It was so fun to watch him enjoy being athletic. His competitive streak unleashed as he pounded the ball over the net. I took out my camera and captured a shot of him as he jumped out of the water, arms above his head ready to whack the ball, a look of concentration on his face. Later, after looking at the picture, I realized that everyone who was in or sitting around the pool was looking at Zach. I knew it was silly, but I was proud of him, my boy who had endured such horrific suffering was out there playing like a champ. But it was one of those bittersweet moments as I allowed my mind to touch briefly on how it could have been—Zach running down the basketball court, all eyes on him. It was a petty thing, I knew, so I brushed the thought aside.

  I loved this boy, and I would be satisfied even if I was the only one in the world who knew what a wonderful spirit he had.

  FEBRUARY SCANS CAME AND WENT, AND WE WERE HANDED ANOTHER three-month pass to normal life. I had started back at work at the dental office a few months earlier, after Zach had recovered from his thoracotomy and was back at school. We were in a routine that felt like the old days, but cancer hung in the corner like a cobweb, annoying but easy to ignore.

  Until one day in late April when Zach came home from school and called me at work to tell me that something didn’t feel right in his chest. I knew it was bad because Zach didn’t complain unless he was concerned, and every time Zach was concerned, he was right.

  I told the ladies in the office I needed to pull some files from the warehouse and excused myself. I hadn’t cried in months, but the impact of what Zach had just told me was like being unexpectedly shoved from behind. I wasn’t prepared, and I needed a private place as I scrambled to get back up. I sat down on the floor of the warehouse and sobbed. All sorts of frantic thoughts ran through my head. Maybe his backpack was too heavy and he had strained a muscle, or maybe he picked up some kind of virus and he was being overly conscientious. But I knew deep down that wasn’t the case.

  I so desperately wanted to cling to our normal lives, but something was wrong and we needed answers. I forced myself to call the oncology clinic and explained what was going on to the nurse practitioner. We scheduled an appointment, and she did an exam, listened to his lungs, and ordered some blood tests. Everything sounded and looked good, but if we wanted to see if there were new lesions on Zach’s lungs, she thought perhaps we might want to think about moving the pending CT up a few weeks—it was up to us.

  We moved it up.

  Cancer was back.

  Eleven

  I DON’T LIKE PREACHY PEOPLE WHO DUMP THE TENETS OF THEIR faith in your lap, knock the dust off their hands, and walk away. It might make them feel better, but it doesn’t help anyone else. They can talk about God and Jesus all they want, but it’s how they live day-to-day and how they confront suffering that really tells the story. I cringe as I write this because I’m not a graceful sufferer. I complain. A lot. But I know the people who have taught me the most about what it means to live a faith-filled life are those who live it and then wait for people to ask how.

  I grew up in a home where I witnessed daily the silent but loud example of what it means to preach always but use words only when necessary. My father supported our family of nine by operating a little auto repair shop in my hometown of Lake Elmo, Minnesota. For over thirty-five years, he spent his days under the hoods of cars, arms submerged in their inner workings; his strong hands with their thick fingers were grease stained and scarred. He was an educated man who gave up going to college to pursue his dream of becoming a mechanical engineer in order to support his ailing father who could no longer work and to help his overworked mother.

  Over the years, he saw a need in our community to help those who were struggling through difficult times. For over twenty years on the second Saturday of each month, he opened the doors of his shop and, with the help of volunteers, repaired vehicles free of charge. It was his humble way to share what God had given him.

  I witnessed other actions of faith over the years too. I remember when I was in my early teens, an immigrant couple from Lebanon had a van that needed repair so they brought it to my dad’s shop. When my parents found out that the couple was living in their van with two toddlers and a baby on the way, my folks invited them to live with us. With seven children of their own and limited income, they converted our garage into a living space so this family would have a place to stay through the winter. For seven months we had sixteen people living under our roof since my grandparents also lived in an apartment in our basement.

  My parents formally trained us in the tenets of our faith. They sacrificed to send all seven of us to a Catholic school. We attended church weekly, received all the sacraments, and had nightly devotions and prayers. But it was how they lived their lives, the sacrifices they made to help those who God brought to them, and the story they created that laid the solid foundation that informed my faith. They lived what they preached and, in doing so, preached by living.

  This example of faith coupled with formal teaching was how I hoped to raise my own children. I wanted my children to see how a life lived in faith could bring hope to the world around them, that acting out of love rather than fear would allow Christ to shine through them without ever having to say a word. And to know that joy—not just happiness, but true joy—comes when we give up our own agenda and let God work through us. Then we can begin to see the bigger picture, the eternal picture, rather than just the tiny brush stroke of our own lives.

  May 2011

  HERE WE WERE AGAIN, WITH CANCER CRASHING BACK INTO OUR lives. It was devastating news, especially after Zach had so many months of a normal life of school and friends. He’d been looking forward to a carefree summer and maybe even to finding a part-time job as a barista. He loved the idea of working in a coffee shop, and he was hoping to end the summer with the trip to Madrid for World Youth Day.

  But instead he started out the summer by celebrating his sixteenth birthday, May 3, 2011, in the hospital receiving his first of several new rounds of chemotherapy in hopes of knocking the cancer back. The infusions required him to be in the hospital for five days at a time with a couple of weeks in between, which meant the summer was shot. I asked the doctors if they thought there was an
y way Zach could salvage the trip to Spain, if maybe we could pause the chemo so he could still go. They advised that we not stop chemo for anything; the cancer was very aggressive, with five new lesions in one lung and six in the other. The trip was lost. Zach was disappointed but turned his attention to gearing up for the battle that lay ahead.

  ZACH HAD BEEN GROWING BACK HIS HAIR FOR MONTHS, AND IT WAS to the point where it was getting obnoxious, but he refused to cut it.

  “You’re beginning to look like Animal from the Muppets,” I told him. “At least let me trim it up a little.” It was driving me crazy, how shaggy he looked.

  “Nope,” he refused. “I’m going to let it grow until it’s down to my butt.”

  Now that the cancer had returned and the new chemo would cause him to lose his hair again, he wanted it gone.

  “Mom,” he said to me the morning after we found out the cancer was back, “will you shave my head this weekend?” He’d been through this before and didn’t want the process to drag out.

  “Sure,” I said with an upbeat tone, trying desperately not to reveal how much I didn’t want to do it.

  That Sunday afternoon I got the clippers out to shave Zach’s head. I laid my hands on his head and kissed his hair, then picked up the clippers and started in. Alli, Grace, and Zach decided to play with it a little, first cutting it into a Mohawk before shaving it completely off. I fought tears as I laughed. I didn’t want to do this again. I didn’t want to give up the “normal” life we’d gotten back, and I certainly didn’t want to watch Zach have to suffer through chemotherapy again. But most of all, it was the reality that we might not win this war, that cancer might actually kill Zach, that was beginning to sink in.

  As I swept the hair up off the floor, Rob took me aside.

  “You should probably save that,” he said in my ear.

  I’d already taken a Ziploc bag from the pantry and pointed to where it lay on the countertop. I put his hair in the bag, sealed it up, and hid it in my closet, then sat on the bed and sobbed as I imagined having only some old hair clippings to hold on to.

  I HAD NEVER HAD OUR FAMILY PROFESSIONALLY PHOTOGRAPHED (IT seemed extravagant), but now I felt an urgent need to capture our family as it was, right now. Alli was already in college, Sam would be leaving home soon too, and Grace was growing up fast. And there was no certainty that Zach would make it. I decided I would pay any amount of money to capture this moment in time. The day before we checked in to the hospital for Zach’s second treatment, I called a photographer named Jeff Dunn. I had seen a stunning photograph he had taken of my close friend Anne. She is an author and needed a photo for her latest book. Jeff managed to capture a beautiful image not just of her but of her spirit.

  “We really need to have this session now,” I told Jeff. “As the chemo builds up in his system, Zach won’t feel well. His eyebrows and eyelashes will fall out. I just need to remember him as he is now,” I explained.

  Jeff rearranged his schedule to get our family in right away, and we spent an evening at a local park, splashing around in the waterfall that ran through it as Jeff snapped countless photographs. I was amazed and relieved at how beautifully he captured Zach’s spirit and the spirit of our family as we interacted. He became a family friend and would take several photographs over the coming years as Zach’s life took each interesting, and sometimes scary, turn. He ensured that no matter what, we would always have Zach’s image close to us. It gave me a measure of peace as we stepped back into fighting the war.

  THE NEW AMPLATZ CHILDREN’S HOSPITAL AT THE UNIVERSITY OF Minnesota opened two days before Zach checked in. The rooms were luxurious compared to the old hospital. They were single occupancy with all sorts of amenities, including a large-screen television with movie and game options along with an outdoor camera that would allow the patient to see what was going on in the outside world. The rooms were also large enough to accommodate several guests, and parties were encouraged.

  So we took advantage and threw a little surprise birthday party with a few of Zach’s closest friends. They surprised Zach with special presents, fake mustaches, and a plastic coconut bikini top (which Zach ended up wearing for Halloween—horrifying). They also came with a giant card that had been signed by at least a hundred of his classmates who wished him well. He would not be finishing the school year and would likely still be going through treatments at the start of his junior year.

  The treatments made him extremely sick for days. Over the course of the infusions, he got progressively worse each day to the point where he couldn’t even raise his head when people came to visit, let alone sit up and play the guitar he’d insisted on bringing to the hospital. Even after he got home, it would be days before he would start to feel well again—just in time to go back in and do it all over again.

  I remember coming home from a movie one night. It was a comedy that had me rolling with laughter. When I peeked in Zach’s room to see how he was doing, he was lying on his bedroom floor with a bucket beside him.

  “Zach,” I said as I kneeled down beside him, “honey, why aren’t you in bed?”

  “I don’t want my bed to remind me of being sick,” he whispered. “I’ll go back in when I feel better.”

  I felt so guilty for going to that movie and laughing harder than I had in months while Zach was so sick he wouldn’t sleep in his bed. I didn’t sleep that night. I felt like I had failed my son and had no way of making things better.

  When I checked on him the next morning, though he still looked pale and sick, he was already up and getting out of the shower.

  “What’s up?” I asked.

  “I’m going to hang out with Mitch and Sammy today. They’re coming over in a little while,” he answered. “I figure, if I’m going to be sick, I might as well be having some fun too.” Somehow he managed to look forward to each day even though he knew it would likely bring with it periods of misery. He refused to let what he suffered define and contain him.

  He endured each suffering with patience, and when it was through, he didn’t dwell on it. It was what it was, and there was no time to be wasted feeling sorry for himself.

  After his third infusion of six, we packed up his things to leave the hospital for home. I rolled up Zach’s comforter and packed it into a backpack, and he grabbed his pillow and guitar and headed out the door. I watched as he walked down the bright green hallway with twinkle lights embedded in the ceiling; he hobbled back and forth with a hitch in his step. I marveled as he cheerfully smiled and waved good-bye to the nurses as he passed their station even though I knew he was so sick he could barely walk. He was telling the story of his faith by being joyful in the midst of suffering, and he was doing it without uttering a word.

  We drove home in silence as Zach rested his head on his pillow against the window and napped while I quietly contemplated the crazy life we had been given. With this last recurrence of cancer, I had begun to shift my thinking from battling through the disease to accepting the possibility of losing Zach. My heart ached at the thought. But I could see the grace that God was bringing into my life through Zach and his humble acceptance of the cross he’d been given. His life was unfolding as an answer to every prayer my heart as a mother had ever uttered for my child: that his life would emulate Christ and thereby bring Christ to others.

  As we exited the highway and entered our neighborhood, Zach opened his eyes and raised his head.

  “How are you feeling?” I asked as I stroked his stubbly cheek.

  “I’m okay. Glad to be home.” He rested his head back on the window.

  “I’m really proud of you. This thing is really hard, and you’ve handled it with extraordinary grace. Thank you.”

  We circled the roundabout and headed down our street. He closed his eyes and thought for a moment.

  “Physical pain is a joke. It’s just Satan’s way of messing with you and trying to get you to feel sorry for yourself,” he said. “Mental and spiritual pain are different. That’s the real battle wher
e faith and prayer come in.”

  I took in a deep breath, puffed up my cheeks, and exhaled slowly. There was so much going on in his head that he worked through on his own. So much wisdom that should be heard as he walked his road of suffering.

  “Ya know, Zach, most people have to wait decades to build a story that people would want to hear. You have something real and solid you’ve lived through with grace. It’s your story to share, and you might want to start thinking about how you want to tell it.”

  We pulled into the garage. Zach waited a moment before he opened the door to get out of the car and turned to me.

  “Who do you think I would tell it to? Who would want to hear it?”

  “I don’t know. Just be ready when they start asking.”

  July 2011

  ZACH HAD COMPLETED THREE CHEMOTHERAPY TREATMENTS. IT had been a grueling cycle of a few days in the hospital, a few days of being extremely sick at home, a few days of feeling better, then back in the hospital. A CT scan of his lungs came back inconclusive. The lesions had not obviously shrunk, so before they moved forward with the last three treatments, protocol dictated that the lesions be removed to see if the cancer had been affected by the treatment—they needed to see if the cancer was dead. Two thoracotomies later revealed it hadn’t worked. The nasty beast survived the most powerful poison we could throw at it. The treatment was stopped.

  It was a good news/bad news kind of thing. Zach was thrilled that the new therapy was outpatient and he wouldn’t have to spend more time in the hospital. But as we sat in the exam room at the clinic, I flipped through the pages of information about the new treatment. I’d been doing this long enough to know what I was looking for—response statistics, those magical numbers that become a cancer patient’s crystal ball. They weren’t good. It was clear we had run out of treatments that would cure the disease, and we were onto treatments that could only extend his life.