Mom writes about son Zach’s illness and death

Laura Sobiech considers herself an ordinary mom who spent 18 years with an extraordinary son.

Readers of her soon-to-be-released book may have a slightly different opinion. Once they are done with the 340 pages of “Fly a Little Higher: How God Answered a Mom’s Small Prayer in a Big Way,” they might come to the conclusion that Laura is every bit as remarkable as her son Zach, who died almost a year ago and sent shock waves through the culture with his music and amazing courage in facing a rare and fatal form of cancer called osteosarcoma.

On May 6, just days after what would have been Zach’s 19th birthday, and just two weeks before the one-year anniversary of his death (May 20, 2013), Laura is releasing a book she started writing just one month after Zach died. It gives readers an inside look at how Zach and his family struggled since the initial diagnosis in 2009, and how faith helped all of them get through it.

Laura’s words are riveting, raw and full of references to a God who gave her hope in the midst of a deadly diagnosis, and gave her a keen eye for the beauty that unfolded during a grueling journey that would lead many others into despair.

Joy in midst of suffering

The book actually began long before Zach died, when she decided to write down her reflections as he suffered through hundreds of doctor visits, dozens of surgeries and rounds of chemotherapy over a span of four and a half years.

“Throughout our journey with cancer, I’d started writing on Caring Bridge as a way to update people, but also as a way to take time to just sit and reflect on what we were going through — the medical stuff but also the spiritual stuff,” said Laura, 44, a member of St. Michael in Stillwater with her husband, Rob, and children.

“It was a really great tool for me,” she said. “Then, it turned out to be something that people were responding to. In unexpected ways, people were relating to what I was talking about. Through that process, I had tucked away different memories and different poignant moments in our journey. What I was really struck by were those moments of pure joy in the midst of suffering.

“In the middle of it, I was so profoundly graced by how beautiful it was. As hard as it was, it was still so beautiful. So, I wanted to take some time to write about that. Through our journey, I had tucked away these different things that would come up and I knew I wanted to write about them in some way. I didn’t think it would be a book. I didn’t think I had it in me to actually put it in that format. It seemed too big of a project.”

But, she had a great source of support just a few miles away. Long-time friends Stephanie Landsem and Anne Brown (mother of Zach’s longtime friend and music partner, Sammy), both authors, encouraged her and even helped her find a publisher. One thing led to another, and Laura ended up turning in the first draft of her manuscript right around Labor Day weekend.

“This is our story of faith,” Laura said. “We’re not a perfect family. We’re very average, we’re very normal people who had an extraordinary thing happen through God’s grace and [want] to share that with the world.”

As a mother of four children, Laura’s life has been filled with many mundane moments, like driving kids to school and cleaning up many messes. But, when one of those children is dying, the simple can become the sacred. Like the time when a visit to the refrigerator became a powerful marker of the journey.

“I was cleaning out the refrigerator and I came across a container of spaghetti,” she said. “That was a meal that [Zach] made for us. And, I remember having this moment that so many moms do when their kids bring home an art project. You’re just inundated with all of these things that your child has made. And, at some point, you have to throw them away. And, I remember having this moment of sheer agony. ‘How do I throw this [spaghetti] away? I know this will be the last meal that he’s going to make.’ He was too sick [to cook any more]. And, at that moment, it just hits you. I have to do this.

“Another moment that stands out is the leaves in the fall, the fall before Zach died. We knew he was terminal. We were coming back from a friend’s funeral, a kid that he roomed with at the hospital who also had osteosarcoma. I remember just being so overwhelmed by the beauty around me that day as we drove home from Forest Lake. The leaves were just screaming with color. I was just like, ‘I can’t get enough of this.’ I remember thinking, ‘What is with me? Why am I so enraptured with this?’ And then I realized it was because the backdrop of our lives was death. It was looming, and everything else just popped against that background.”

Of course, the brilliant colors soon fade, and the leaves eventually fall. That process mirrored the final stage of Zach’s journey, which took place over the winter and early spring of 2013. The last weeks and days of his life are well documented in the book, which offers a deeply personal and intimate look at the final chapter of Zach’s life, which also happens to be the last chapter of the book.

The simple yet powerful descriptions of that intense time take the reader into the room of a teenager who changed the world and continues to impact the culture in which he lived through the music he left behind. His now-famous song, “Clouds,” has more than a million hits on YouTube, and a line from this song is the title of Laura’s book.

‘Extraordinary grace’

But, there’s a price for recounting the family’s journey in such stunning detail. Writing several drafts of the book, and editing it four or five times, brought Laura back to those heart-wrenching days, when bad news flowed through their lives, and she had to watch her son suffer through some excruciatingly painful procedures. One that was particularly hard to watch was something called a port flush, which involved sticking a large needle into Zach’s chest.

She could read the pain on his face during the procedure and would agonize that she couldn’t do anything about it. Yet, it was those very moments that produced some of the deepest conversations of the entire journey.

“We were coming home from that [procedure]” one day, Laura said. “I was just thinking about how much he hated having it and how patient he was with it. He really didn’t complain.

“I said, ‘You know, Zach, are you ever just mad? Just angry that you got cancer?’ And, he thought about it for a little bit and then he said, ‘You know, I would rather it be me than somebody I loved, because I can handle it. But, I couldn’t handle watching somebody [else] go through this.’

“At the time, I think he had just turned 15. He had been through some really hard stuff at this point. He had to have his hip replaced, he had to have lung surgery twice. I just remember it really hitting me at that moment that he had such extraordinary grace. He had such a capacity for empathy. He could see through his own suffering and think about what it was like for his friends and his family.”

Actually, Zach may have been right about it being harder to watch suffering than to experience it. During a 45-minute interview about the book and her journey through Zach’s sickness and death, Laura broke down and began to cry just once — when she was asked to describe what it was like seeing her son in pain.

“I can so relate to [the Blessed Virgin] Mary and what she went through with her son, as far as witnessing the suffering,” Laura said. “It’s a powerful thing to witness [death], especially, I think, in a child. I gave birth to that boy. I consider it to be such a privilege to see this child’s whole life, to be there when he entered [the world] and then to be there when he left.”

One of the consolations in her grieving is the legacy Zach left behind. It has a spiritual form in the many faith lessons he embraced and shared with her and others. But, it also has a monetary form in the fund created in his honor that is designed to help others diagnosed with osteosarcoma.

It’s called the Zach Sobiech Osteosarcoma Fund, and it has swelled to $740,000. Laura and Rob have given away $500,000 of that money to a local research team at the University of Minnesota formed specifically to address this rare form of cancer.

“I now have hope that we will crack this thing open [and find a cure],” Laura said. “And, wouldn’t that be a glorious end to this story, that Zach’s life and death will eventually lead to other kids not having to go through what he had to. That’s our earthly hope.”

But, she makes a clear distinction between earthly and heavenly hope. That has been one of the most important parts of the faith journey for her, and why she has been able to navigate all of the emotional ups and downs that come with the catastrophic illness of a child.

“I spent so much time thinking about things like suffering,” she said. “Why God allows it. Joy. What joy means. And, especially, hope. Hope was the big thing for me. You hear these things all the time, like our hope is in eternity, but what does that mean on a practical level?

“It was something I struggled with from the very moment that we found out he had a tumor. In that moment, I knew God was asking us to trust him. I just knew that from the very depths of my soul that that’s what was being asked of us, and it was going to be hard. But, I said yes.”

As time went on, she knew that her yes was echoing the yes of her son — and, ultimately, the yes of Jesus, who accepted death on a cross because he knew it was the only way that people could be saved.

Laura now understands that simple and timeless truth more deeply, even as she continues the grieving process that she senses could get harder in year No. 2 without Zach.

“We miss him. We miss Zach terribly,” she said. “But, on the other hand, we are so blessed because we’ve gotten to see the amazing things that he’s been able to accomplish. And, I don’t think that the impact would have been as great had he not died. I don’t think that his message and his music would have had the response that it’s had, had he not had [cancer as] part of his story. And so, we are a family that is blessed in the sense that we have been able to see the fruit of our suffering, and what God has done with it. And I think that has helped us.”