Lessons In Life And Death From 12-Year-Old Lola

On Aug. 26, 2016, Lola Muñoz was diagnosed with a diffuse intrinsic pontine glioma, an inoperable brain tumor. DIPG affects children almost exclusively, with a 0% survival rate and an average prognosis of nine to 12 months.

Photographer Moriah Ratner spent over a year and a half documenting Lola's journey, first in New York and, later, in Chicago following a family move.

Lola's story has been published by The Washington Post and National Geographic. Ratner talked to NPR about the challenges of photographing a long-term project so early in her career and the toll it took on her.

How did you discover Lola?

As part of an assignment for my photography class at Syracuse University, I reached out to the Make-A-Wish Foundation of Central New York in the fall of 2016. They said they needed someone to photograph a "rush wish," which meant the child was terminal.

I met the Muñoz family at their home on Fort Drum in Jefferson County, New York (a 90-minute drive north of Syracuse). We connected by baking chocolate cupcakes and preparing for the annual Halloween fair at Lola's school. Lola had just completed six weeks of radiation therapy.

What made you decide to continue this project after your assignment was done?

Lola did not fear dying but, rather, being forgotten. I fell in love with her immediately and promised I would work my hardest to make sure her legacy lived on with integrity and grace. I also wanted to use my photographs to defy stereotypes associated with childhood cancer and create awareness in hopes of stimulating a call to action.

How long did you spend working on this project?

This project became my life. I usually spent four days a week with the Muñoz family. I would drive from Syracuse to Fort Drum — usually on Thursday or Friday — spend the weekend and head back to Syracuse on Monday. I'd even go to Mass with them on Sundays — and I'm Jewish.

All of Lola's appointments were in my calendar, as well as any school functions, festivities or family outings. I even joined the family on their annual weeklong camping trip; that summer it was near Niagara Falls. Lola would call me "her shadow" and introduce me to her friends as her "paparazzi."

After Lola passed, I spent a week mourning with the family in Chicago.

About halfway through the project, I know you had a particularly difficult time. Can you talk about what happened and how you worked through it?

I think my lowest point was when the spring 2017 semester came to an end. I declined a prestigious internship offer because I would be away from Lola, and I had promised to see this project through. I knew I needed to be able to live with the choices I made when I looked back on the project. But my dedication came at a price.

One evening in May, my friends invited me to dinner. There was a book laying on the couch called Lessons in Death and Life. I picked it up and immediately became overwhelmed with intense anxiety. I stepped outside and called Lola's mom, who calmed me down. My friends went to a faculty member expressing concern about my mental health; the professor asked what would be left in my life after Lola was gone if everything I did revolved around her.

A few days later, I went home and was able to spend time with my grandpa. He said, "You have a gift, and that gift is you. You don't have to prove anything to anyone. The only person you have to prove is yourself. You have done beyond a mitzvah." I told him how I didn't feel like the same person as I was last year. He said that is called growth.

Tell us what it was like to spend a year and a half with a family dealing with a devastating diagnosis. Can you tell us about how you felt?

I felt like I was never doing enough, and I was scared to lose the person I was when I was with Lola. The grief became all consuming. I had low energy and wasn't sleeping well. I could physically be in a space, but my mind would be elsewhere. I had trouble remembering what day it was, to the point where I'd mix up deadlines. Even though my friends were trying their best to relate and support, I felt they couldn't possibly understand, because they weren't experiencing what I was, leaving me feeling very alone.

At a certain point, I knew I had to be present and stable or my work would suffer. I started journaling and found that a blank page was an open and honest space of release. I began biking an hour a day when the weather was good and indoor rock climbing when it wasn't. I went to bed earlier, ate well and saw my therapist regularly. As the year progressed, I found the support system I needed to go on and maintain a healthier balance.

On many levels, this was a journey about my own self-discovery.

Any other experiences you would like to share?

Another tough moment was not being there when Lola passed. I visited her in Chicago three days before her health made a sharp decline. My mom's 60th birthday was April 1, so I surprised her and flew from Chicago to D.C. While boarding my flight back to Syracuse from D.C., Lola's father texted me that she had worsened overnight. I wasn't sure if I should fly to Chicago or go back to Syracuse to grab more equipment. I decided to get on the plane to Syracuse, then catch a flight to Chicago later that evening. When I landed in Syracuse, Lola had already passed.

But I realized that her story is not defined by the moment she took her last breath. This is a story about her life and who she was.

It has been a privilege and honor to tell Lola's story. Our relationship has been a gift and taught me that nothing in the world is more valuable than time. I attribute much of my success and identity to her influence.

Lola Muñoz passed away on April 2, 2018.

Moriah Ratner is a freelance photographer based in Portland, Ore. Follow her on Instagram: @moriahratner.

Copyright 2019 NPR. To see more, visit https://www.npr.org.