Open the Door

Justin Baldoni: Hello again, End Well. I’m Justin Baldoni, and I’m so happy, blessed, privileged, humbled, excited and every other adjective I can think of to be interviewing my dear friend and soul sister, Laura Sobiech. It’s been a while.

Laura, for those who don’t know, is the mother of my friend Zach Sobiech, whose story I first told almost eight years ago in the documentary series My Last Days, which aired on SoulPancake. Zach’s song “Clouds,” which inspired the movie I just made, reached number one on iTunes the day of his funeral.

Shortly afterward, Laura wrote a book. She turned her pain into art and blessed all of us with it. Now, almost six years later, I’m so excited to be talking with you. Thank you for being here, Laura.

Laura Sobiech: Thank you for inviting me.

Justin Baldoni: I’ve known you through many ups and downs. We just made this movie, and it has come out. There is so much excitement and conversation surrounding it. People are reaching out to you from everywhere. You’re played by Neve Campbell. It’s on Disney and available around the world. Millions of people have probably seen it by now. Zach’s song reached number one on iTunes again, and he made history.

But at the end of the day, and this has been important for me to remember, this is still a story about you losing your son.

As exciting and amazing as all of this is, Zach is no longer physically here with us. You lost your boy. Yet somehow, throughout this entire process, both then and now, you have carried yourself with a kind of grace I have rarely seen in another person.

Where the heck does that come from?

Laura Sobiech: I think it comes from being faced with the thing I feared most, which was losing a child.

Along the way, you have to decide: Am I going to hold tightly to my idea of what my life should look like and what Zach’s life should look like? Or is there a way for me to let go?

For me, it meant letting go of the expectation that my son would grow into adulthood and everything that would have meant for him and for me. I decided that I was going to follow where my life led, engage with it wherever it took me, find joy in those moments and fully immerse myself in them.

I’ve done that very imperfectly. There were plenty of times when I was anxious and completely leveled by the experience.

But I think what you’re describing is grace. You named it exactly. I see it as God’s grace because when we let go of our expectations, we create room in our lives and hearts for grace to enter and guide us.

Justin Baldoni: We have different faiths but very similar spiritual beliefs, and I know we’ve had many conversations about this.

What would you say to someone going through something similar who may not share your faith? How can they walk this path?

Laura Sobiech: It will look different from the way I did it, but the best answer I have is love.

For me, God is love. For someone who doesn’t have faith, that might mean choosing to focus on loving people.

Our tendency, especially in Western culture, is to view death as a failure. If you die, you failed. It’s a strange idea because we are all going to die, but we are deeply afraid of it. Death is treated as a failure, particularly when the person is young and it is related to illness.

There is a tendency to scramble and search for everything that might make us healthy. That is honorable and good. Life is precious, and we should do what we can to prolong it.

But sometimes that pursuit takes over everything.

What Zach experienced, and what was so compelling about the way he chose to live, was that he stopped focusing on gaining more days. Instead of trying to add to the number of his days, he focused on the people in his life.

I’ve had the opportunity to work with many families whose children have died. That is something these children do so well. They never forget to love the people in their lives. They never stop looking beyond themselves. They naturally engage in that way.

Adults can struggle with that. We become focused inward and forget that, whatever we are going through, we feel better when we choose to love the people in our lives.

Justin Baldoni: Zach had an interesting relationship with time, and I think you helped him work through it.

There is a scene in the movie in which you and Zach have a conversation on the front porch. That conversation really happened, although I don’t think it happened on the porch in real life. But in movie land, it does.

How did you wrestle with time between the moment Zach was told he was terminal and the moment he died? How did Zach wrestle with it?

Laura Sobiech: It connects to what we were just discussing.

Before the final year of Zach’s life, we had spent two and a half years going through treatments for osteosarcoma. We were always focused on the next treatment. What comes next? What do we try next?

When we learned that Zach was terminal and that nothing remaining would significantly prolong his life, we had to make decisions about where to place our attention.

My wrestling match was really with God. I reached a point where I didn’t even know what to pray for anymore.

The scene you mentioned shows Zach hitting the wall of realizing, “I don’t have a future to plan for. What do I do with my time? How do I live now?”

As a parent, it was terrifying to walk him through that because he was in a place I had never been. Everything I was saying in my head felt right and also kind of stupid.

It was one of those moments when I simply trusted and dove in. I tried to help him focus on what he did have.

He didn’t have all the things the rest of us become distracted by, often necessarily. We have to figure out how to live, work and plan. He didn’t have to think about which college he would attend or any of those things.

He could focus on questions like: What do I want my life to look like? Who am I? What do I want to do? What do I want to leave in the world?

For him, it meant clearing away the space that unnecessary things were occupying.

Justin Baldoni: So often, we don’t know what to say. We say the wrong thing. We hardly ever know what to say, and we need to become better at making room for that uncertainty and leaning into it.

I think that is what that conversation represented. Sometimes you have to lean deeply into the difficult things.

Sometimes things aren’t going to be all right, and you can’t simply say that they will be. You have to go there and talk about the hard things. That’s okay.

Laura Sobiech: I recently participated in a panel with a doctor who had watched the film. She was deeply appreciative of that conversation and how we portrayed it because we so often forget to meet people with cancer, illness or suffering where they are.

One thing I see in medicine and Western culture is the mentality of, “Okay, what is the next thing? What is the next treatment?”

Sometimes the answer can be found when we calm ourselves, enter the moment as human beings, meet each other where we are and simply sit in that space.

Be still. Let peace enter. Let grace enter.

Slow down enough to appreciate life. Slow down enough to live and truly engage with it.

Justin Baldoni: I hear you, Laura. I’m going to try to slow down.

Laura Sobiech: That was especially tailored for you, Justin.

Justin Baldoni: Speaking of that, I want to mention that you now work for the Children’s Cancer Research Fund, which is where Zach left things, in a way.

Laura Sobiech: One of the things Zach loved most in life was children. He was the kind of teenager all the little kids gathered around. He could get down on their level.

Before he died, after he wrote “Clouds” and it became clear that the song might do something in the world, he chose to establish the Zach Sobiech Osteosarcoma Fund and raise money for osteosarcoma research.

It is a rare disease that doesn’t receive much attention. So far, we have raised $2.2 million. Every dime of the royalties from Zach’s music goes into that fund and directly supports research.

We are very proud of that.

Justin Baldoni: I want to ask you one more thing.

What would you say directly to someone facing their mortality right now? Or to the friend, sibling or parent of someone facing their mortality? What might help them on that journey?

Laura Sobiech: I would probably say something very similar to what I told Zach.

We live here. We forget that we live right here, in this present moment.

So often, we are already focused on the next thing. But that isn’t where we live. We don’t live in the future, and we don’t live in the past. We live right here in the present.

This is where you are. Tap into it and make the most of it, but not in a busy way. You don’t have to be productive. You simply have to engage with the moment, relish it, enjoy it, find the joy and immerse yourself in it.

For those who are with someone who is dying, it is okay to be clumsy and awkward. The perfect time to say the big things will probably never arrive.

That is okay. We are human. It will never line up perfectly.

But don’t allow those opportunities to pass and leave yourself with regret. Say the things that need to be said. Spend the time that needs to be spent. Love each other. Don’t lose that opportunity.

Settle your soul. Immerse yourself in the moment. Don’t be afraid of it. Enjoy it, and love.

Justin Baldoni: Laura, I love you so much. Thank you for doing this and sharing your wisdom with us.

Thank you to End Well for hosting us and creating space for this conversation.