ACCO was lucky enough to speak with Laura Sobiech, mother of Zach Sobiech ahead of the CLOUDS movie release. Laura’s first book, “Fly a little Higher” has been updated and revised to coincide with the film release of CLOUDS and she kindly sent Blair Scroggs, Public Relations Coordinator a copy ahead of its release. In this interview, Laura talks more about her experience writing the book and starting the movie process with Justin Baldoni. She talks about meeting Fin Argus for the first time and even provides advice to parents of children diagnosed with cancer. Make sure to follow this series by reading Zach’s Gold Ribbon Hero story and on Friday, October 16, watch CLOUDS on Disney+.
The book is NOW AVAILABLE!! Order on Amazon or Barnes and Noble.
The following is a transcription of an interview with Laura Sobiech, Zach Sobiech’s mother and author of both “Fly a Little Higher” and “CLOUDS: a memoir,” Blair Scroggs, Public Relations Coordinator at ACCO, and Ruth Hoffman, CEO of ACCO.
Blair Scroggs:
Thank you for taking time to talk with us and raising awareness for childhood cancer. We are so excited. One of the questions I had for you was you started writing things down. Obviously, you’ve written this entire book. You started writing things down because you didn’t want to forget them. What made you compile it into a book?
Laura Sobiech:
Yeah. That’s kind of a funny story. The only writing I’ve ever really done was just CaringBridge. Maybe made a couple journal entries, always had good intentions of doing that as far as just journaling in general, but never really consistently until CaringBridge. My two closest friends, Anne and Stephanie, were published authors, and Anne’s agent had been reading my CaringBridge as we were going through this whole thing. After Zach died, she asked Anne if I would consider writing a book because if I was interested she would be my agent. I skipped over this whole part of writing that most people have to go through. They usually start with a book, they have to find an agent, then that agent will pitch it to the publishing houses. I didn’t have to do any of that. My agent, Jackie, started pitching the idea without a book. Basically, we wrote up a one sheet of … I just in my mind plotted out how the book would go and then did chapter titles with a brief description of what it might look like, and the storyline. She started pitching that along with the video from My Last Days and prepared a video that’s out there that they can look at. And then, Thomas Nelson jumped at it. A month after Zach died, we got the book deal and they wanted me to write it in 12 weeks.
Blair Scroggs:
Wow. That’s so quick.
Laura Sobiech:
Yeah. It is. Thank you for affirming that. It turns out I work really well under a tight deadline and I was able to do it. I was so grateful that I had that to put it all into because it’s so easy to say, “I’m going to do that one day,” and those memories fade so fast. I was glad I was writing an article that was still really raw.
Blair Scroggs:
I can’t imagine writing this whole book in 12 weeks for a four-year battle. I’m telling you, I read this whole book cover to cover this weekend and I actually was on a podcast last week. I sent a text to the girl from the podcast and I was like, “You have to go get this book right now. It’s so good.” I said, “You have to read it. You have to read it. We have to talk about it.” She started listening to the book because she bought the audiobook and she sends me a message 10 minutes in and she says, “I’m on the first page and I’m already in tears.” I was like, “Just wait.” I was like, “This book has all the feels.” I said, “You’re going to laugh, you’re going to cry, you’re going to just want to throw the book across the room because it’s just so good.”
I can only imagine what this movie is going to be like. Justin is very talented as a director and I know that Ruth and I both previewed “My Last Days” and she sent it to me and I said, “I’m already watching it.” I was just so excited. How are you doing? How is everything going? I’m sure that probably a lot of media have reached out to you, especially with the release of the movie coming out. How’s everything going? I know you guys were so against publicity when “Clouds” first started to gain traction. How’s it going?
Laura Sobiech:
It’s going really well. We’re really excited. The whole movie thing was one of these things that was just such an unknown for me. Even trying to imagine … The way I prepare for hard things is by living in that space for a while, so I would do that when Zach was dying. Every night, I would just think about, “Okay. What’s it going to be like? How’s that going to feel?” I would just put it on and wear it for a while. The movie stuff was a different piece. How do you know how you’re going to feel when there’s a movie about you out there? That’s just weird, and not a whole lot that’s relatable in life. We’ve been pleasantly surprised.
The trailer’s out there and now the people are responding to that in really positive ways, so that’s exciting for us. We’re just excited. Really, at the end of the day what matters is that we are true to our original mission which was to bring some light into this dark area of childhood cancer and specifically osteosarcoma. If we can do that and if we can inspire people to give, we saw that when it went viral and we are hoping to do that again and raise a bunch of money. Yes. We’re getting requests for interviews, Disney is doing an amazing job of publicity so I’ll be doing a press junket around the movie. I’m excited because they’re helping us promote the cause too. That’s cool. I couldn’t have landed in a better place. I’m just thrilled with how this all is right where it’s supposed to be.
Ruth Hoffman:
Did they do an accurate accounting of what happened? So many movies deviate from how you really felt or what really happened. Were they pretty accurate and you’re pleased with that?
Laura Sobiech:
Yeah. We probably had a lot more access to the process than most families do just because of our relationship with Justin.
Ruth Hoffman:
Okay.
Laura Sobiech:
That said, I was pretty hands-off with it. Writing a movie is a different beast than a book. You have an hour and a half to tell a good story, and it’s easy to go down those side stories. I didn’t really want to be part of that. I would say it’s about 80% true. There is some of it that’s just like fiction. Things just didn’t happen that way, but I would say the essence of who Zach is very present. Fin Argus did an amazing job playing him.
Blair Scroggs:
And he looks just like him. It’s insane.
Laura Sobiech:
I was up there for filming. I was there for a week by myself for the first week of filming, and then for the end a couple of the scenes are family and friends. There were 70 of us that went out there and we were all extras. That was fun. The first time I saw Fin dressed in a bald cap on Zach’s crutches, Zach’s clothes, his crutches, the stuff from his bedroom, Fin came in dressed like Zach wearing his clothes on his crutches, and it was just like nothing I’ve ever emotionally felt before. It was like Zach was walking in the room and I was like, “Oh, that’s what that felt like to have him in this space again.” I forgot that’s how it felt. There’s an element of I love this, and then I miss him all over again. I was like, “I miss Zach.” I cried in front of a complete stranger for 10 minutes, which I’ve never done in my whole life.
Blair Scroggs:
I think I remember reading something in the book where you said that you actually tried to run your fingers through his hair and touched his face because he was just so real.
Laura Sobiech:
I was and he was so gracious, literally. I’m sitting there touching him and touching his hair. He’s even got a mole on his right cheek right where Zach did. I’m like, “I am so sorry I am treating you like an object and I don’t mean to, but it’s just so remarkable to have … He was at our house when I was doing this. He said, “It’s okay.” He’s an amazing actor. He’s so young. This was his first big, major film, and the first time he’s playing a real person which is a big deal. That’s hard.
Blair Scroggs:
That’s a big deal, for sure.
Laura Sobiech:
He did it so beautifully. He did such a phenomenal job at capturing the spirit of Zach. There are scenes in the movie where he’s sitting on the couch with Summer who played Grace, Zach’s youngest sister. She wants the remote from the TV and he’s like, “No, no, no” and it’s exactly those two fighting on the couch. They both just nailed it. There’s this scene in the trailer where … Have you guys seen the trailer?
Blair Scroggs:
Yeah.
Ruth Hoffman:
We did, yeah.
Laura Sobiech:
Okay. There’s the scene where he’s in the bathroom and he does this kind of dance. Zach would do that all the time. He nailed it. It was really fun to see that. There are definitely a couple of scenes … There’s one in particular where Zach and Amy are together and they’re talking about their future and Zach gets upset because he doesn’t have a future and he feels badly about pulling Amy into this life of his. He runs out of the house and he’s upset and he gets in the car and he tears off and she’s begging him to stay. Zach would’ve not done that in that way, but I know he was feeling those emotions. He just didn’t act like that. In a movie you have to show it.
Ruth Hoffman:
Yeah. You have to have the drama.
Laura Sobiech:
Yeah. It was an experience.
Blair Scroggs:
That is so cool. I’m so excited. I can’t wait for it to come out. When they finally released the trailer I said, “I know what I’m doing on October the 16th. I’m ready to go.” One of the next questions I would like to ask is you said at the beginning of the book that you had asked God to make his life about something big, and coincidentally enough Zach did the same thing. He asked for something big. Did you ever think that a movie about a kid with osteosarcoma would come out and raise awareness? Did you ever think that that would happen?
Laura Sobiech:
No. I kind of joke about when I would have said that. I had any inkling that this would’ve happened I would’ve been like, “It’s okay. We’re good.” My idea of it was just so much smaller. It just was not this big. I’m so grateful that for whatever reason God answered our prayer this way because even though there’s sacrifice that comes with it, we’re putting ourselves out there and so far it’s been pretty easy, but I know this is a new way of putting ourselves out there so we’re setting ourselves up for some possibly critical things. You’re just giving up parts of your life, which that’s hard.
Blair Scroggs:
Right.
Laura Sobiech:
All the people come in and take over the narrative and you lose that, and that’s part of the sacrifice too, but for whatever reason our family has been able to handle this. We’ve been given this opportunity, and now we would be the voice for people who don’t ever get this voice. I am thrilled that we’re able to highlight this disease, raise awareness not just about osteosarcoma, but about child cancer in general.
Blair Scroggs:
Exactly.
Laura Sobiech:
We didn’t know kids got cancer just because… no reason, until Zach got it. It’s something that unfortunately as it is with most diseases the people who get them and their families are the ones that have to bang the pots and pans together and say, “Listen to us,” so that’s what we’re doing. We’re just grateful that we’ve been able to have such an amazing platform to do it. We don’t take for granted the fact that we have a kid who had cancer who died, and now we get to see this, this huge legacy. I work with families all the time who lose a kid to cancer and they don’t get this. We don’t take that for granted. We know that’s a big deal.
Blair Scroggs:
It’s so important to raise awareness for childhood cancer. Before I started working for ACCO, the only type of cancer I knew about with kids is obviously leukemia. I feel like that’s the poster child for cancer with kids is leukemia I think probably because I saw “A Walk To Remember.” That’s really what I had associated it with, and that was basically it. It’s so good. I’ve been working for ACCO for about two years collectively. Every day that’s just my main mission is to raise awareness for childhood cancer. My first year that I started working for ACCO I wrote a story about a kid named Grace. She is a brain tumor survivor and appeared at the State of the Union last year, which was so amazing. I just feel like little things just keep moving that [childhood cancer awareness] forward and people are noticing about childhood cancer. It’s just so good that this is coming out. I was so excited.
Laura Sobiech:
Yeah. I was too. It’s so funny because another movie that’s on Disney+ is “The Fault in Our Stars” which is also about a kid who dies from osteosarcoma.
Blair Scroggs:
I can’t watch that. I watched it one time and that was it.
Laura Sobiech:
It’s funny because that was Zach’s favorite movie. He was really reading the book when we were on our trip to Lourdes. It’s really interesting that now it’s coming full circle for us that we’re going to be joining that space too. We’re excited about it.
Blair Scroggs:
That’s just so exciting. You mentioned that you work with kids and their families. What are you doing now? I guess you’re not working at the dentist’s office or as an EMT anymore.
Laura Sobiech:
Not anymore. I just retired from being a firefighter EMT two years ago. After Zach died, I of course went right into writing the book and then there was the whole year of promoting the book. And then, I joined Children’s Cancer Research Fund, and I think our organizations do very similar work. I work there in Minneapolis as a community outreach coordinator, which for us means I reach out to families and ask them to share stories.
Blair Scroggs:
That’s wonderful. That’s what I do.
Laura Sobiech:
Yeah. That’s what I do. It was just the perfect fit because especially in Minnesota and people know our story for the most past and I can just go right in with them and they know I get it, which is nice. Lately, I’ve just been working on all the movie Clouds stuff.
Blair Scroggs:
That’s awesome. Could you give me an update on everybody else, all the kids, your husband, everybody?
Laura Sobiech:
Sure. Rob still works at the same company that he’s worked at forever. Tom Everett Scott played him, who I love. He doesn’t totally nail Rob. He does this wave what he would never do. We’re doing our thing. Alli is now married and she has two little ones. She married Collin, I think 11 days after Zach died. They have Finnegan and Frankie who are five and two and the most adorable creatures in the world. Sam got a degree in biochem and he works for an organization that they contract for 3M. He lives in Minneapolis and he does work that way. Grace is in her third year of college. She’s going for graphic design.
Blair Scroggs:
That’s wonderful.
Laura Sobiech:
Yeah.
Blair Scroggs:
How is Mitch? What did he end up doing? I feel like he had to do something “sciency.” I saw the photo in the book and I’m like, “Okay. What’s he doing?” I figured I’d ask.
Laura Sobiech:
Actually, he works at the University of Minnesota and he graduated with a degree in biology. He works in the same lab where the osteosarcoma research is being done that we fund. He just applied for medical school and he wants to go on to be a pediatric oncologist and do research on osteosarcoma.
Blair Scroggs:
I can see him doing that for sure. The way that you spoke about how he and Zach used to have their scientific conversations and banter back and forth, that just sounds exactly like what he would be doing.
Laura Sobiech:
Yeah.
Blair Scroggs:
How about Amy?
Laura Sobiech:
Amy … She went on to become a news anchor in Duluth. She just finished up with that job and actually moved to Minneapolis working for a PR firm.
Blair Scroggs:
And Sammy?
Laura Sobiech:
Sammy lives in New York, so she’s got an apartment in Brooklyn and she works for … I can never remember what publishing house she works for, but she is a publicist for children’s authors for them, for their books.
Blair Scroggs:
Do you get to see everybody still? Do you get to see all the kids? I’m sure you see the kids, but do you get to see Amy and Sammy when they’re in town?
Laura Sobiech:
Yeah. Absolutely. If they’re all in town together, they always make an effort to come over here and we’ll just hang out. They’re actually all in town now. Sammy moved back because of COVID shutting down her building, so she’s been home since July. I’ve gotten to see her a few times. They’re planning on doing some online streaming concerts that would be an incentive for standing up for Zach’s movement, so we got a fundraising page for that.
Blair Scroggs:
That’s so cool.
Laura Sobiech:
They’re going to do a little concert for that with Fin Argus. They’ll be practicing here. They always come over here to practice for me.
Blair Scroggs:
Do you guys still live in the same house?
Laura Sobiech:
Yeah.
Blair Scroggs:
That’s so cool. Zach seemed really positive every day. Where do you think that positivity came from? Was he ever down? I remember there was one part in the book.
Laura Sobiech:
Honestly, I think the kid was born with it. He was the extrovert in the family. Thanks Zach for leaving us with all this. He just wanted to have fun. He was goofy and he like to have fun, but there was a very contemplative side to him too. He was very thoughtful. He was the peacemaker in the family too. He was the one that everybody connected with, so he was kind of the hub, which was one reason that made it so scary to lose him because as a mom I was like, “How are we going to be living without this kid?” We’ve managed. I don’t know. I think he had a very deep spiritual life that he lived quietly. He wasn’t super vocal about it. In the “My Last Days” documentary he said “it’s all about just making people happy,” and I think for him what that meant was he found great joy in connecting with people. That brought him joy. We just wanted to say “How do you bring joy into your own life when you make people happy?” He was always like that even from a little baby. He wanted to engage with people. I think there was part of him that that was just part of who he was. I also think that as a young man he’s got to deal with the big things he had to deal with. You have to rise to it. You either can be decimated by it or you rise to it. I think that’s why we do the work that we do is we get to know these kids and they rise through it. That’s what’s so inspiring about them.
Blair Scroggs:
I agree. I agree 100%.
Laura Sobiech:
Yeah.
Ruth Hoffman:
Most moms will say that their cancer kid was that special kid, that kid in the family that was compassionate, that was strong, that had this inner strength. I know with my daughter it was the same thing. She was the one kid that handled it graciously. It’s always interesting. They’re old souls sometimes.
Laura Sobiech:
They really are, and they learn it. They learn it. They have to learn how to find joy in it, and I was always impressed with how he did that, especially I think after he died and I was able to just look back, because when you’re in it, you’re in it. You’ll just plug along and you’re like, “Okay. Good. He’s okay. Let’s move on to the next thing.”
Ruth Hoffman:
Yeah.
Laura Sobiech:
There was just something special about him. You can have them pushing that awful port in. Like, “Gross!” No complaints, just rolling with it, joking with the nurses.
Ruth Hoffman:
It does hurt. We have port so it doesn’t hurt. It’s like… it hurts.
Laura Sobiech:
And it’s gross!
Ruth Hoffman:
It doesn’t come easy.
Laura Sobiech:
No. None of it’s easy. Not any part of it is.
Ruth Hoffman:
Yeah.
Laura Sobiech:
Yet they do it.
Blair Scroggs:
I think what I loved about that too with the whole reading the book, the last conversation that you guys have, you guys are in the doctor’s office for the last visit. You guys are walking out of the hospital or the treatment at the clinic, and he says to you, “I guess I don’t have to go to school anymore. I don’t have to do any more homework.” He just had that, “Okay. Let’s just roll with the punches.” I really appreciated that, because I think you could either go one or two ways like you’re saying. You could fall apart or you could just keep going, and that’s what he was doing. It cracked me up in the book.
Laura Sobiech:
I was so grateful that he allowed us to do that. There was the part where, “I guess I don’t have to do homework anymore,” and so we just busted up laughing.
Blair Scroggs:
Exactly.
Laura Sobiech:
And then it was like, “Let’s have a party.”
Blair Scroggs:
Yeah.
Ruth Hoffman:
A no homework party!
Laura Sobiech:
Yeah. Everything in one party. This would be your wedding, your prom, your all the things party.
Blair Scroggs:
The party seemed like it was amazing.
Laura Sobiech:
It was so fun. It was the place to be. It really was. They all were. All the parties, all the big events were just so full of joy because of Zach, but also because of all the people that came too. Being a part of a community that loves you and cares for you is just there was nothing else that can replace that. I just remembered there were whole stretches of time where I couldn’t pray. I just didn’t have it in me, and to know I had a whole church full of people who were doing that for me. I just remember thinking, “Thank you because I can’t do it right now.”
Blair Scroggs:
Right.
Ruth Hoffman:
I have a question on that one that wasn’t written down. Were you able to pray since then?
Laura Sobiech:
Yes. I have been. I love my faith. I’ve actually been able to go deeper in prayer than I have been. I don’t think I would’ve been able to had I not gone through that. I think part of it is that it’s not always natural. Sometimes it’s full of distraction, sometimes my mind’s going all over the place, sometimes it feels completely empty. I definitely went through times like that, but I made the decision that I was going to bring myself to that space even if I was distracted or I didn’t feel like it and I was going to open myself up to God. I just kept doing it and doing it, and doing it, and then I finally go to a place where now I can spend at least an hour, sometimes two every morning just in quiet meditation. Again, messy. Sometimes my mind’s shooting all over the place so it doesn’t look like what some people think it should look like. This is part of how our story unfolded. I learned to trust God through it even through the loss through detaching what I wanted him to live. I wanted the future that I had in my head, but learning and trusting that there was something bigger that I couldn’t see going on. Nobody can tell you, “There’s a big picture.” That sucks to ever do that to people, but I was able to in my own heart be like, “I have to see there is something different going on here than I can see,” and then through that and then being able to see. Look what happened. That’s what I mean. I know not everybody gets this, not everybody gets this affirmation or these miracles, the way things line up.
Ruth Hoffman:
Yeah.
Laura Sobiech:
I have for whatever reason that’s completely outside of myself in my own power been granted that. It’s just a huge journey for me to be able to learn to trust God. I don’t think I would’ve been able to. It’s hard. It sucks, it’s hard, it’s miserable, but God has come down into it with me and I’ve seen him here over and over.
Blair Scroggs:
Do you have any advice for parents who are either newly diagnosed going through any kind of childhood cancer or specifically osteosarcoma? Do you have any advice for parents going through it in the thick of it?
Laura Sobiech:
Yeah. That is a hard one because it’s such a different place at the beginning that is to have hindsight. Because it’s so overwhelming, I think probably just if you can tackle it with more than one person so if you’re married, have a husband and the team there when you’re going through appointments, especially at the beginning because there’s so much information. You’re having to make decisions about crazy things like fertility with your kids, all these things coming at you. It’s like a fire hose.
If you can have both people together, which seems a stupid thing to advise, but it is helpful. Be patient with each other because you’re entering into not only all this crazy stuff, this whole new world. Literally, you’re entering into a new space. Most people have never been in a hospital like that before. You’re meeting all new people who are going to be the primary people in your life for the next several years, you’re learning a new language, most people don’t know medical speak when they’re getting a diagnosis like this, so all these new things. Ask questions. Don’t be afraid to push back and ask questions if you’ve got them. Be patient with the medical staff because they’re in it with you, but they’ve also got other people to deal with. Just be patient and have a kindness. I’ve seen some parents go in who are so freaked out that they just are swinging at anybody that comes at them. I just feel like that’s sad because it starts a relationship often in such a bad place. Try to be patient with each other even though it’s scary. Take help. When people offer help, hopefully people will offer help, accept it. Be specific about the things that you need. A lot of times people don’t know what to do so they’re going to be very general and say, “If there’s anything I can do.” “Yes. Can you bring us dinner every Friday night? We’re finding it difficult to pay for gas. This is all for the traveling that we’re doing. Can you get people to give us gas cards or something?” Just lower that whole, “I can do this on my own,” thing. Make that go away. It’s okay to accept help. One of the reasons is because there are people who really want to take care of you. Let them into this. It’s okay to let people into this with you. Give yourself space. I was saying earlier, one of the things that I did for my own self-care especially that last year of Zach’s life is every night I had a playlist that listed “Sad Songs” and I would pop my earbuds in and I would just sit in my favorite rocking chair and I would visualize what it was going to look like to watch Zach die. I would go step by step through that. I would picture what it was going to be like to go to his funeral. I didn’t want to just put myself in that place. I cried every night for an hour and then I would put the earbuds away and I would go to bed and then I wouldn’t think about it until the next hour, the next night. It helped me stay sane to allow myself to go there a little bit, but then pull it back in. Families learn to live in this space here, in this present moment, and that’s one of the things that these families learn pretty quickly is joy only lives in the present and you can let it be robbed by the past and the future. You have to be intentional about living here in the present.
Blair Scroggs:
That was his whole message through the whole book. That was your message. Live like you’re dying. It was just so evident. I smiled when you said his funeral because I thought about the bagpipes.
Laura Sobiech:
His funeral is actually on YouTube.
Blair Scroggs:
Is it?
Laura Sobiech:
Yeah.
Blair Scroggs:
I have to find it now.
Laura Sobiech:
Yeah. It’s in two or three parts. It was a beautiful funeral. There’s bagpipes at the end, and if you do look it up it’s funny because as soon as you hear the bagpipes fire up you hear a couple of people giggle. It’s his group of friends because they knew how ridiculous he was. Of course, he’s going to have bagpipes.
Blair Scroggs:
That’s so funny. Yeah. I cracked up when he said that he wanted bagpipes. I feel like I know him now reading this book and I’m like, “This is exactly what he would do.” My last question is if he were alive, what do you see Zach doing now? Where would he be? Do you ever or often think about that?
Laura Sobiech:
The times that I really think about it, I don’t think about it a whole lot. When we go to Christmas Eve Mass, that time was just precious to our family. It’s like our favorite night of the year. When we go now, it’s hard because those kinds of events it’s so obvious he’s gone. You can really feel that. Always feels a little clunky. This is always off. There’s that. But then, it’s also a time of year when all the kids come home. That’s the time of year when I see not his closest friends but some of his friends from grade school coming in and they have beards, they’re engaged, they’ve graduated from college. That really marks time for me, and that’s when I really am like, “I wonder what Zach could look like now. I wonder what he’d be doing.”
I think what he’d be doing, he had such a heart for young kids. Kids loved him and he loved kids. He got kids. He enjoyed being the older kid that could bring joy to them, so he really dug that. I think he’d either be into teaching or he wanted to be a nurse. He wanted to get into the U of M and he applied and they accepted. I think he intended to go into nursing. I don’t know he had it in him to be a doctor to be honest. He was kind of lazy, not that nurses are lazy, but he wanted to serve kids and I could see him being in of those professions.
Blair Scroggs:
You didn’t see him being a singer?
Laura Sobiech:
Yeah, but I don’t think that it would’ve been his primary – I think it would’ve been a hobby.
Blair Scroggs:
Yeah. For a day.
Laura Sobiech:
Yeah. Right. I think that he still tapped into it, but I don’t think it would’ve been a profession for him.
Blair Scroggs:
Well, I really appreciate you taking the time to talk with us today. We are just so excited about this whole thing.
Laura Sobiech:
I’m thrilled! Thank you so much for sharing. I’m excited for what we’re going to be able to do for childhood cancer.
Blair Scroggs:
We’re excited too. I’m thrilled at it. Thank you again for the book. It’s awesome. I really appreciate it.