Fly a Little Higher Read online

  Praise for Fly a Little Higher

  Once in a blue moon, you meet someone who changes you. Though I never met Zach Sobiech, his grace in the face of a devastating prognosis was a beautiful thing to witness. The fact that his mother, Laura, and entire family were able to accompany him on his journey with such strength and courage (not to mention love and laughter) is a powerful lesson, not about dying, but about living.

  — KATIE COURIC

  Zach is an example of how one can choose to live one’s life powerfully. His life and music will live on, sharing a beautiful message.

  — JASON MRAZ, GRAMMY-WINNING ARTIST

  Through a few chords and a simple song Zach Sobiech inspired millions of voices to sing along to a message of courage, grace, and the acceptance of love. Fly A Little Higher is proof that one of God’s great gifts is music. Sing loud and rejoice.

  — SCOTT HEROLD, CEO AND FOUNDER, ROCK THE CAUSE RECORDS

  Zach Sobiech’s voice will live forever. He left the most powerful gift of all, a soundtrack of poignant melodies inspired by the boundless love of family and friends. This is the story of how a teenage boy—cursed with an evil disease—fought back and lifted his soul beyond the clouds. Zach’s story will make you cry, make you feel life is unfair. But in the end Zach taught us how to live and how to cherish every single gift, every moment. I’m honored I got to share his story around the world. My time with Zach is a gift I’ll cherish forever.

  — ED LAVANDERA, CNN CORRESPONDENT

  © 2014 by Laura Ann Sobiech

  All rights reserved. No portion of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means—electronic, mechanical, photocopy, recording, scanning, or other—except for brief quotations in critical reviews or articles, without the prior written permission of the publisher.

  Published in Nashville, Tennessee, by Nelson Books, an imprint of Thomas Nelson. Nelson Books and Thomas Nelson are registered trademarks of HarperCollins Christian Publishing, Inc.

  The author is represented by Joelle Delbourgo Associates, Inc., 101 Park Street, Montclair, NJ 07042.

  Thomas Nelson, Inc., titles may be purchased in bulk for educational, business, fund-raising, or sales promotional use. For information, please e-mail [email protected].

  Bible translations are from the THE ENGLISH STANDARD VERSION. © 2001 by Crossway Bibles, a division of Good News Publishers.

  This work is the author’s recollection of events, and the details are portrayed to the best of her memory.

  ISBN: 978-0-529-10075-7

  ISBN: 978-0-529-12179-0 (IE)

  ISBN: 978-0-529-10076-4 (eBook)

  Library of Congress Control Number: 2013957741

  Printed in the United States of America

  14 15 16 17 18 19 RRD 6 5 4 3 2 1

  For Zach

  I am so grateful I got to be your mom

  Contents

  Author’s Note

  One

  Two

  Three

  Four

  Five

  Six

  Seven

  Eight

  Nine

  Ten

  Eleven

  Twelve

  Thirteen

  Fourteen

  Fifteen

  Sixteen

  Seventeen

  Eighteen

  Nineteen

  Twenty

  Twenty-One

  Twenty-Two

  Twenty-Three

  Twenty-Four

  Twenty-Five

  Twenty-Six

  Twenty-Seven

  Twenty-Eight

  Twenty-Nine

  Thirty

  Thirty-One

  Thirty-Two

  Thirty-Three

  Thirty-Four

  Thirty-Five

  Thirty-Six

  Epilogue

  Acknowledgments

  Photos

  Author’s Note

  OVER THE YEARS WHILE WALKING WITH MY SON ZACH THROUGH HIS battle with cancer, there were moments I tucked away in my heart, knowing that eventually I would write them all down.

  What resulted is not a story about how Zach died.

  Rather, this story is about a boy who found himself tested by pain and loss. It’s about a boy who learned to live while dying and in doing so brought hope to countless people who desperately needed it. But most of all, it is a story about a boy who showed his family, his friends, and eventually the world that everyone can choose to fly a little higher.

  One

  September 2012

  ZACH DROVE UP THE DRIVEWAY, AND I HELD MY BREATH, WANTING—and not wanting—to hear how the first day of his senior year of high school had gone.

  He got out of the car and pulled his backpack and crutches out of the backseat. I stood in the kitchen, far enough from the living room windows so he wouldn’t see me watching. Even from here I could see the heaviness in his gait and on his face.

  As he walked in the door, I greeted him from the kitchen, keeping my distance, allowing him the space a seventeen-year-old boy requires from his mom. My heart raced, but I remained steady and focused. I’d seen this look before, though it was a rarity. He was the kind of kid who could take a lot before he got down. Setting his crutches aside, he glanced at me long enough to see the questions in my face. He hobbled the few steps to the big chair with the ottoman in the corner. The oversized pendulum clock that hung on the wall above the chair was ticking, my heart surpassing its rhythm.

  He wouldn’t look at me, his face turned down and eyes averted. I remained grounded in the kitchen, not wanting to jump in too soon. I crossed my arms and leaned my head and shoulder against the wall, then asked, “How did it go?”

  He took a deep breath, rested his forehead in his hand, and with huge tears spilling from his eyes, said, “I don’t know how to do this.”

  And then he sobbed.

  Though my heart was breaking, my mother’s mind was bent on fixing his pain. I walked to the chair and sat on the armrest next to him. I leaned over and laid my cheek on his thinning hair, my hand on his shoulder. “Okay. Tell me what you mean.”

  Of course I knew what he meant. How do you do “this”? How do you pretend that life is normal when there is nothing normal about cancer slowly eating away at your bones and lungs? There is nothing normal about taking nineteen pills a day or finding out that the osteosarcoma has spread to your lungs for the third time in three years and has invaded your pelvis and the soft tissue surrounding it. And there is certainly nothing normal about learning, at seventeen, that you’re terminal. How do you do this? How?

  He took a moment to get control of the tears.

  “The first assignment in English was to write a college essay,” he said. “In every class the teacher was emphasizing how this is our last year of high school and that we should take it seriously and use it to prepare for college. What am I supposed to do with that? What’s the point?” he whispered and finally raised his eyes to meet mine.

  He went on to tell me that the toughest part of the day, and the past few months, was watching his friends making plans for the next phase of their lives. He felt like they were leaving him behind, and it was lonely. Zach, who had always been a social creature, was experiencing something he never had before. The friends whom he loved to be with were becoming sources of agony.

  “We’ll be hanging out downstairs just watching a movie or whatever, and everything is fine. Then one of them will bring up college, and all I can think about is how I’ll be dead.” He turned his face away and pinched the bridge of his nose to stop the tears.

  I cupped his head in my hands and kissed the top of his head. I moved to the couch across from him, took a deep breat
h, and looked into this brave, weary, and heartbroken boy’s soul.

  And I prayed.

  I prayed the desperate prayer of a mother who knows her child is beyond the reach of her wisdom. In my head, I screamed, Give me the words! Please . . . just give me words. With a clenched jaw, I took another breath, exhaled, and without any words ready, I spoke.

  “How many kids are in your class?” I asked.

  “I don’t know, maybe around seven hundred,” he replied.

  “Zach, the likelihood of one of them dying within the next few years is pretty good. Think about that. There is a kid in your class who is going to die soon but just doesn’t know it. You know you’re going to die, and you have a pretty good idea of when. You have the advantage of preparing your soul. You get it. That other kid—he thinks he’s just preparing for college. So what’s really going on here isn’t that your friends are moving on and leaving you behind; it’s the opposite. You’ve moved on and have left them behind.”

  He lifted his head, intrigued yet still troubled.

  “Yeah. But what am I going to do with my time? It just seems so pointless to be doing this stuff,” he said, gesturing to his backpack.

  I was relieved. The words he needed to hear had been given. I trusted there would be more.

  “You’ll have to decide; it’s your choice. If graduating is important to you, maybe you can reduce your schedule and just take the classes you need to graduate. If it’s not important, then decide how to fill your time. Do you really want to be at home while everyone else is at school? You could get a job or give guitar lessons. You have the freedom to make your life whatever you want it to be without the worries of planning for a big, long future like the rest of the kids.” My heart rate quieted as I saw the sadness on his face ease into thoughtful consideration of the possibilities.

  We kicked around some ideas. He decided graduating was a worthy goal (should a miracle happen, he wanted to be ready for college), and attending school would allow him to see his friends daily and keep up with their lives. But he didn’t want to tie up more time at school than was absolutely necessary. He wasn’t feeling great and didn’t have the energy for a full class schedule.

  We hammered out a plan that he felt good about: a later starting time and a pared-down schedule. I said a silent Thank You! to God for giving me the words Zach needed to hear. He wanted to be happy, and when he couldn’t do it on his own, he was perfectly willing to let someone throw him a rope. I am grateful I got to be on the end of it every so often.

  ZACH WENT INTO THAT SECOND DAY OF SCHOOL WITH A PLAN AND A renewed sense of what he was doing and how it was going to go. I wish I could say it was easy flying after that. It wasn’t. He came home the second and third days much like the first, discouraged and broken. I continued to throw desperate prayers up to heaven, and heaven continued to respond.

  “Zach, remember where you live. Remember this small space,” I said as I used my thumb and forefinger to measure out an inch and then drew a vertical line up and down in front of me. “You are here. In the present. Yes, you have cancer and yes, you will likely die from it. But not today. Today is where you need to be. Not tomorrow and not six months from now. Just today.”

  That gesture, two fingers measuring a thin space in time, became a code for us over the next several months. We used it to encourage each other when things were tough and we needed to reset our thinking: keep it in the present and leave the future in the future.

  ONE MONTH INTO HIS SENIOR YEAR, ZACH WAS IN A GOOD PLACE emotionally; he had figured out a routine that worked for him, and had gained some measure of peace in the belief that God had a plan that was bigger than him. Zach knew his suffering had purpose, even if he didn’t see the reason. He was waking up cheerful and whistling in the shower again—one of my favorite sounds, second only to his strumming on the guitar.

  We were driving home after a clinic visit at the University of Minnesota Amplatz Children’s Hospital where Zach continued to receive a new treatment that his oncology doctors hoped would slow the growth of the cancer. I treasured those precious thirty-minute car rides. They were sacred times when we were alone and could have our deepest discussions about suffering and sickness, death and dying. Death was a topic we had learned to talk about openly; we touched on it sparingly, but with purpose.

  Zach had been due for his port to be flushed, a procedure that involved a needle being stuck into his chest like a tack into a bulletin board, then flushed with saline. It was the only procedure he ever complained about. The pain, the pressure from the fluid pushing into his veins, and the taste of the saline grossed him out. But it never seemed to get him down; he just rolled with whatever came his way. I, on the other hand, hated needles to the point of having a phobia and wasn’t sure if I would be as compliant and patient as he had been.

  “Have you ever been angry that you got cancer and have to put up with all the junk you have to go through?” I asked, keeping my eyes on the road. We had left the city and were driving through what remained of the sparse farmland and sun-fried fields that held their ground in the midst of the Twin Cities’ suburban sprawl.

  I could see out of the corner of my eye that he had turned to look at me. After a moment of thought, he turned his gaze back to the road ahead. “No. Actually, I think I’m the lucky one. If somebody has to have cancer, I’d rather be the one to have it than to be the one who has to watch and then be left behind. I don’t think I could handle watching someone I love die. You all have it worse, and I’m so sorry for putting you through this.”

  As we descended into the St. Croix Valley, I thought about what he’d said. The enormity of his compassion enthralled me, and I wondered if I would feel the same if it were me who was dying.

  He had always been a compassionate soul; empathy was so natural for him. Even from a very young age, his heart would ache for people who were suffering. I recalled a memory I’d held in my heart from years earlier when he was four and his little sister, Grace, was nine months old. She was born with a ventricular septal defect, a hole in her heart, and had it repaired with open-heart surgery.

  She was recovering in the ICU when Zach, who had insisted on visiting her rather than spending the hot summer day at Grandma and Grandpa’s pool, walked into the room. He was too short to see over the edge of the metal crib so he stepped on the bottom rail, hoisted himself up, and peered in at his baby sister with all her bandages, tubes, and wires.

  I will never forget that precious little boy with his sun-bleached hair and huge green eyes quietly gazing at his baby, at his Grace, his little heart breaking, tears welling up in his eyes. My own heart filled with an unnamed emotion that a mother feels when she sees her child rise to an occasion that is beyond his years—a mixture of pride, love, and heartache.

  Now, ten years later, I thought about Grace and Zach and how they had become the best of friends. He was fiercely protective of her.

  A few months earlier, the day we’d found out the cancer was in his pelvis and he didn’t have long to live, Zach’s concern turned to Grace. The thought of his little sister having to deal with his death destroyed him. He knew she would be devastated, and he wanted to soften the blow.

  That evening as I was making dinner, he sat down at the counter. “Mom, I was thinking. Grace is going to be really bummed that the cancer is back, so I thought it would be nice if I bought her a pair of custom Converse. She and I could design them together, and I’ll let her pick out whatever she wants. I think it will make her feel better.”

  I paused while chopping the onion and set the knife down. “I think she would love that,” I said as I wiped a tear from my cheek. “Darn onions.”

  That was three months ago. As we turned onto our street, I wondered if a pair of custom-designed shoes was enough. Zach and Grace’s mutual love for shoes made them the perfect gift, and designing them together would be a memory Grace would cherish. But did they convey the whole message? Did Grace really know how much Zach loved her? Had he ever just t
old her? If he had, surely they would be words that she would keep tucked in her heart forever, more than a well-worn and loved pair of tennis shoes.

  We pulled into the driveway and stopped next to the abandoned basketball hoop. I turned to Zach. “You know, letters would be a good way for you to tell people how you feel about them. You might want to think about writing some.” Several years earlier, I had seen a story on a local news station about a woman who was dying of breast cancer. She spent the last months of her life writing letters to her children to be opened on their birthdays and important events. The memory of the story surfaced when we found out Zach was terminal. Letters seemed the perfect way for him to be raw and honest without the fear of the awkwardness that can sometimes come when people aren’t ready to hear what needs to be said. I’d been meaning to mention the idea to him, and hoped desperately he would write them, knowing what a comfort they would be for his loved ones when he was gone.

  “Yeah. I should probably do that,” he said as he flipped a guitar pick between his fingers. (He had one in his pocket wherever he went, and I was constantly picking them up around the house and especially in the laundry room.) “Who do you think should get one?”

  “Your sisters, brother, and best friends would be a good place to start.” I left it at that. I’d planted the seed, but wouldn’t pester him. He’d do it if he felt up to it.

  A COUPLE WEEKS LATER, IT WAS MID-OCTOBER. THE DAY WAS SUNNY and warm, the air was clean, and the leaves were a noisy riot of color. Zach and Grace were at school. Zach’s older sister, Alli, who was a senior at the University of Minnesota Twin Cities, was working at her magazine internship, and his older brother, Sam, was in his second year at the University of North Dakota in Grand Forks. Everyone was where they should be. They were safe, and they were happy. Life felt good again.

  It was my day off from my job in a dental office where I worked in the claims department, and I’d spent the morning running errands. I couldn’t wait to roll up my sleeves and get some work done around the house, and I was planning to start by purging the family room where Zach spent most of his time. I threw open the windows to let the fresh air fill the house. I took a deep breath and got to work.