Ethan Hallmark sat in the white chair on July 15 in a crowded auditorium to tell his story. He didn't know it then, but it was 73 days before he would die
It's not easy to talk about a child with a terminal illness. As the father of the Midlothian, Texas, boy put it, the subject pretty much shuts down conversations.
But there's something about Ethan that will make you stop, listen, watch.
At 13 years old, he was in between, having both the body, face and mindset of a boy becoming a man. Perhaps it's this middle ground that makes his story particularly impactful. Perhaps it's his own outlook on life that seems to come from wisdom beyond his years.
"Obviously I want to beat this disease, but I'm not going to be that sad if I don't," Ethan said in a film about his battle with cancer that was released Monday night. "Of course I want to live a long life, who doesn't? It's not really my plan though."
The poignant, 53-second clip from the film is below:
This is Ethan's story — the story of a boy who is OK with being second.
'I Didn't Really Know What Cancer Was'
More than four years ago, after school from 2:45 to 6 p.m., you would probably find Ethan somewhere with a baseball in his hand.
In fact, it was during a game that Ethan really started thinking something was wrong.
Ethan hunched over on a baseball field, his stomach aching and his mind hoping that the batter at the plate wouldn't hit the ball to him.
"And sure enough, he hits it towards me," Ethan said in the documentary-style film. "And I thought 'Oh no, I don't want to go get this ball.' And so I started backpedaling because I didn't want to let my team down. And my back hit the fence."
As a reflex his arm went up and he caught the ball.
"I didn't really care that much about catching it because my stomach and legs hurt so bad. All the other kids ran back to the dugout and I just walked, more like limped really," he said.
It wasn't long after this incident that Ethan's family would learn the then 9-year-old had stage 4 neuroblastoma.
"I didn't really know what that was," Ethan said. "I knew it was cancer but, I didn't really know what cancer was either, but I knew it was bad. But I didn't know how bad. So my life pretty much started changing right there."
'I Am Second'
Ethan's 45-minute documentary — “Many are the Wonders, The Second Story of Ethan Hallmark" — premiered Monday as part of the I Am Second storytelling movement. Since 2008, more than 100 people such as Phil Robertson, Tony Dungy and Lauren Scruggs have sat in the organization's iconic white chair to share candid stories about abortion, death, anger, war, purpose, satisfaction and pride.
But Ethan's story went beyond the white chair and black backdrop into the community that he touched for the last four years.
"We got into this project and we realized the material and the story line is so rich that we could not adequately do it justice in that singular format," John Humphrey, director of communications for I Am Second, told TheBlaze.
"Content-wise we recognized, inherently, that there’s some sad elements to this story," Humphrey said. "It is not an 'OK, we’re going to tie this up in a bow at the end' kind of story, but that’s OK. That’s what people struggle with during course of living out life, encountering uncertainty, disappointment, pain, a real testing of their faith."
In addition to deviating from the movement's usual style and length of stories, this film was different because of the community and Ethan himself.
"Part of the whole involvement of the community really came out from Ethan’s friends. They started it using I Am Second groups in the local school. That became a prayer movement for Ethan that then started to take root among adults," Humphrey said. "When you have that much prayer and that much involvement and compassion, something special does rub off on everybody."
"You can’t watch it without putting yourself in the shoes of him or his parents, family members or friends and not be part of the narrative that’s taking place," Humphrey said of the film.
As for Ethan, Humphrey said the young man was given a gift of wisdom beyond his years.
"God gave him that ability to humbly go ahead and accept that role and live a life in front of everybody that was inspiring," Humphrey said.
'My Body Was Wrought With Grief'
Rachel had her four children already coated in sunscreen for a trip to Six Flags. They were to head there right after Ethan's first CT scan, but the mother would later learn that an amusement park was not in the cards that day.
After being pressed to go to Ethan's pediatrician after the scan, Rachel knew something was seriously wrong when she was checking in.
"He's standing there at the physician's desk and I see him turn his head and look at me and when he did, he looked down immediately," Rachel recalled when it was her turn to sit in the white chair.
Once in the office, Rachel's children, including Ethan, were escorted elsewhere and she received the news no parent wants to hear.
"People say, always tell me all the time, God will never give you more than you can handle. But I could say in that moment, it was far more than I could handle," Rachel said.
Seeing experts in the days that followed, Ethan's parents were told that their son, given his age and his type of cancer, only had a 20 percent chance of survival.
Ethan would undergo years of treatment that included everything from chemotherapy to surgery to liquid radiation to external radiation to a stem cell transplant. When he later relapsed, doctors said it was 100 percent terminal.
"Your whole body feels like it's on fire. It feels like you're laying on a bed of nails and you're going through it not on top of it," Ethan said of one of his treatments. "And still nothing. I guess then is kind of when we decided no more of this incredibly hard treatment. Four years and it's still nothing."
'God Answered Me'
"You sort of have these moments when you ask God, 'Why? Why my son? Why can't you use this in a different way?' Not being angry with God but just, wishing he would take it away," Matt said, taking his turn in the white chair. "God answered me in that moment. It was a moment that was really crystal clear."
Full of emotion and tears, Matt remembered in the documentary what he felt God say to him.
"God said, 'How dare you question my love for him.' Because that's what I was doing, questioning," Matt said.
"He said, 'He's only your son temporary, he's my son forever' and how could I even ask him that question because God loves him so much more than I do," Matt said, crying. "And so I knew at that point that God does love so much more, so much more. If he can send his son to die, how much more can he love my son."
Matt said that after that moment, he never asked God why again.
Jeff Thompson, a youth pastor in town, said the Hallmarks are living the "anti-American dream" and are thriving.
"Their family is thriving in the midst of this unbelievable suffering," he said.
Thompson described the way the Hallmarks rallied around each other with this disease as being "not only countercultural, it's counter intuitive."
The family's story, Humphrey said, "shows another alternative than what society is trying to trend us toward."
Assisted suicide has been a hot topic recently with a 29-year-old Oregon woman being vocal about her choice to take a lethal dose of prescription drugs through the state's Death with Dignity Act because she has terminal brain cancer.
"We're not saying what's right or wrong, but what we are saying is here is a boy who chose to face it just squarely and didn't opt for an easy out. By doing that, other people's lives were made much richer," Humphrey said.
Some of this perspective might have to do with how Ethan saw the world.
It's tucked into the teenager's favorite Bible verse, Psalm 40:5.
"Many are the wonders you had done, Lord God, the things you have planned for us, nothing can compare — none can compare with you," Ethan said, reciting the verse. "If I were to count your mercies, they would outnumber the sands on the sea shore."
"I know it's kinda weird that my favorite verse is mercies and what not, but it's true," Ethan said. "Even though this cancer has been a lot of bad stuff, there's been a lot of good stuff. I met friends that I would have never met. One friend, I know, has come to Christ, just because I played with him."
"I've grown closer to God, my family has. I wouldn't trade my relationship with Jesus for anything. Nothing ... at all," he said.
"Even if I do pass away from cancer," Ethan said at another point in the film, "I'm going to be focused on the goal. And when I get there, even if it's soon, I hope to kneel before and hear him say, hopefully hear him say, 'Well done, good and faithful servant.'"
Ethan died Sept. 26, 31 days before his story was released.
"My name is Ethan Hallmark and I Am Second," he said.
Watch the whole of Ethan's film on the I Am Second website.