Jonathon M. Seidl
September 25, 2015 | 12 minute read
Rachel Hallmark was getting ready to bring her four children to Six Flags in Arlington, Texas. She just had to take care of one quick thing first. Her eldest child, Ethan, had a nagging ache in his stomach recently. Medicine didn't really help. So she packed up all four kids and brought them to the doctor so Ethan could get a CT scan.
It wouldn't take long, she thought. At least not long enough to derail her plans for a fun day with the kids, whom she had already lathered up with sunscreen.
She couldn't have been more wrong.
When the pediatrician made her sit down, she realized it. Ethan had a massive tumor in his abdomen. Later tests would reveal it was neuroblastoma, a rare form of childhood cancer that was routinely fatal.
The baseball-loving 9-year-old was about to have anything but a normal childhood.
***
We started our clinic visits this week. He goes two to three times a week in between chemo to the oncology clinic. I was dreading our first visit as I didn't know what to expect. I was afraid to be honest. As we turn the corner to enter the parking garage, a song came on the Christian radio station. It goes, 'This is where the healing begins." God couldn't have spoken much clearer to me. Our family has definitely been turned upside down and all focus is on healing our son. I don't know how we could do this without our faith in Jesus Christ. Because of Him, we can continue on day to day.
***
That's part of the first post Rachel ever wrote on CaringBridge, a place where people going through medical difficulty can update friends, family, and supporters. There are 93 pages worth of updates on Ethan's site.
Ninety-three pages of raw honesty. Hurt. Pain. Fight. Love. Faith.
If you've been to that site or this one before, you know how Ethan's story ends. He battled the disease for four years as it ravaged his body, going into remission once but then spreading to his bone marrow and colonizing in his arm, leg, knee, and behind his heart. All the while he had an attitude that's almost unfathomable.
"Obviously I want to beat this disease, but I’m not going to be that sad if I don’t," he said in a film made about his life. "Of course I want to live a long life, who doesn’t? I want to watch my sister and brothers go to middle school with me, go to high school, watch them graduate. Even I want to graduate. It’s not really my plan though."
https://www.youtube.com/watch?v=7jDyUSv_oQU
On September 26, 2014, he died at age 13.
But while you may know how Ethan's story ends, his family is part of a larger one that's just beginning.
***
It is with the most excruciating, unimaginable agony I write this post. Our precious son's abdomen has exploded with tumors. There are too many to count. Ethan has weeks to live. His doctor feels six weeks would be the maximum, but could be much sooner based on tumors invading crucial areas. Instead of starting chemo as planned yesterday, we took our son home. There will be no therapy, no more earthly options. We will meet today and put our son on hospice.
***
"The best way I can put it is, the hurt is still there just like it was a year ago."
Matt Hallmark talks calmly into his cellphone on a 95-degree, September afternoon. I had just asked him how he was doing nearly one year after Ethan's passing. The answer isn't complicated: It still hurts. But his tone and pace are almost like he is trying to comfort me.
"For months after, the emotional ambushes would come frequently. It would be seeing something on the ground, or looking up at a doorway and expecting Ethan to walk through it, and it would just be instant," he says. Those outbursts are subsiding. But the root of them still remains.
"You're not getting over anything, instead you're coming to the realization that he's gone."
The anniversary date, though, hasn't been as tough to deal with as some other ones.
"Birthday, Christmas, things of that nature were definitely extremely difficult. One year is certainly going to be difficult, but in my mind I'm thinking it's probably not going to be as difficult as his birthday was— that was really tough. Other things, like my birthday and Rachel's birthday, are tough."
Rachel agrees.
"Any day that means something, whether it's Christmas or Thanksgiving [is tough]," she says, her cracking voice interrupting her Southern drawl. "Christmas especially," she adds later. "Since he's been born I've had his stocking hanging up. What was I going to do this year?"
A friend stitched his favorite Bible verse on one and they hung it with a picture collage of him, although she's quick to point out she doesn't want to turn remnants of Ethan into a shrine. That's not the point. It's more about the small things that can help celebrate his life while helping them cope with the pain.
The stocking that the Hallmarks hang at Christmas.
She sums up that pain like this: "It's as hard as you would imagine it would be when you think about losing a kid, but then it's exponentially harder than anything you could imagine."
"My heart still hurts. Matt’s heart still hurts. Grief is a marathon that will only end when Matt and I reach the finish line that Ethan has already crossed through," she writes in a June 3 CaringBridge post. "We simply miss our buddy every second of every day."
"There's no getting over it," she tells me. But then she shifts, refusing to let the grief define her and her family. "It's how you walk through it that's going to impact the rest of your life."
***
People often tell Ethan and me it's ok to be angry. Go ahead and yell it out at God. He can handle it. I know God can handle anything, but our hearts just can't. How can we be angry at a God who loves us infinitely more than our finite minds can grasp? With hearts so full of sorrow and pain, there is just no room for anger and bitterness; instead, we simply rest in His arms, close enough to hear His heart. We seek for that glimpse of His face, letting our tears melt away.
***
As we talk about what it was like losing Ethan, Rachel says something that I've heard before, "Look at your child and imagine losing them."
For a moment, I do. I have a 5-month-old girl. The thought is devastating. I can only imagine how I would react to losing my first-born. Anger would only be the beginning. I couldn't rule out a struggle with God.
Matt and Rachel? No way.
There's no, "Why, us, God?" No, "Why Ethan, God?" No, "How could you do this to us, to him?"
Nothing.
"I can't fathom God's love, so I don't think I can even fathom an explanation from him," Matt says.
He goes on: "God's presence doesn't mean that life is going to be easy. He has a better plan for each and every one of us. And his love is and will be sufficient for you. That's what I would love every person to know and experience through the hardship even though I wouldn't wish what I went through on my worst enemy."
Matthew Hallmark stares out the window at his home.He recalls a time when Ethan was still alive. Someone, with good intentions, told Ethan it was fine to be angry with God. Just let it out.
"Ethan wasn't OK with that. And I wan't OK with that," Matt recalls. "How can we be angry at God if we truly have faith in God? God works all things for the good for those who believe in him. So how can we sit in judgment of God and his choices if we truly believe and have faith in him?"
"Ethan told us, 'I can't be angry at God.' And I told him, 'We can't be. We can't be angry at God if we love him.'"
Rachel's version comes out with an almost preacher-like passion, her cadence picking up with each passing sentence.
"His first thought wasn't, 'I'm going to ask God why.' He didn't care why," she says. "He had no desire to ask God, 'Why did I have cancer?' It wasn't even a thought in his mind."
Instead, Ethan had one hope for when he met God: "'If I die, the only thing I really hope he tells me is, 'Good job, buddy.''"
"Those words of his helped me through my grief," she says.
Matt understands how counterintuitive all this is. Especially in a culture that finds offense so easily. A culture that, as he puts it, is so focused on grasping the American dream and that doesn't want to experience any sort of deviation from it.
"It's one of those things where, if you're focused on this world or this life, you're not going to get it," he explains.
"Americans have a distorted view. They don't want to have pain, they don't want to go through difficult circumstances. They think everything should be rosy and great, there should be no sadness."
"That's just not real. That's not life. That's not what being a Christian or a loving God is about."
He finishes the thought: "When people begin to view it through those glasses, then you can start to realize that God's got a plan and it's a far better plan than anything I could come up with. And yeah, I don't understand it, but I'm not called to understand. I'm called to have faith."
***
In our son’s final weeks at home, you couldn’t peel Matt away from him. With such tenderness and love, Matt took care of Ethan’s every need. At night, he crawled up next to him in a small twin bed, getting up every 15 minutes with him. Matt told him stories, spoke of Jesus, and gently held his dying son for days on end. In our son’s final hours on this earth, his dad helped him walk to the bathroom where he stopped and told Matt, “Dad, I wish we could go home.” Matt said, “Buddy, we are home.” With that, Ethan pointed towards Heaven and said, “No, Dad. I wish we were home.” Ethan knew where he was going. He just wished he could cross the finish line with his greatest hero and best dad a boy could ever have. Ethan truly loved his dad with every ounce of his being.
***
I ask Rachel if she can point me to someone over the last year that really captures how Ethan's story has made a difference in someone's life. It's harder than it sounds.
"You ask me about one person, but there's just too many," she says.
The letter on top is the one Rachel received the day we talked.She mentions a teacher that texted her recently. A little boy at the hospital who came to Christ when he saw Ethan reading his Bible. There was someone else who left a message on the CaringBridge site. She vows to look through and get me something specific.
A few hours after our chat, I receive an email:
Wow, so I literally just received the most amazing letter from a stranger in the mail. I think it is more powerful than the guestbook post I’ve been searching for. Seriously, I’m blown away at God’s timing. For this to come in today’s mail gave me chills. I won’t give you the whole letter as she wrote four pages, but I’ll directly quote some of the incredible and stunning words she wrote about Ethan’s impact on her life. Her name is Mary [...] she worked for a few years in the rough part of Chicago. [...]
“There is something I want you to know about Ethan - he broke open the hearts of the most difficult class I had on the Chicago-South Side. He led them to Jesus!...The students had their struggles. The sixth grade class was truly challenging. Every day I would come home feeling as though I failed. I would sit in prayer and ask the Lord to give me something, anything, that could reach these children. This prayer continued. I do not remember exactly when, but I looked on the I Am Second website for something that could inspire them. By chance, I found the story of your son. I showed it to the 6th grade - All I can really say is it changed their life! They did not become perfect overnight, but they asked for I Am Second. They wanted God. In fact the only times they were ever in a true giving and receiving mode was during their I Am Second sessions. In it they listened to each other’s stories, stories that would break your heart. Abandonment, abuse, fatherlessness, sexual abuse…pain we could never imagine beneath these tough exteriors. Ethan convinced these children that they were loved, that God was with them, that they mattered and could do great things. Honestly, I did not teach them, Ethan did. On the second to last day of school each student stood up before witness and gave their life to God. Each of them opened their broken hearts to Christ’s love. It was the witness of your son that changed the lives of African American children in some of the most violent neighborhoods in the U.S. I want you to know this. It is not a news story. It is just the simple working of God’s grace through your generosity of sharing your struggle and faith…"
Go back and read that again.
***
When we asked the kids what made them the saddest, my 11-year-old daughter said, “I’m sad because I can’t remember what Ethan was like before he had cancer.” That statement caused a moment of stunned silence from both Matt and me. At first, it broke my heart that she couldn’t remember the days before cancer. Immediately, I thought how if she couldn’t remember (she had just turned 7 at his diagnosis), how would my now 8 and 6-year-old sons remember Ethan at all in the future. It was then that the answer came to me with such clarity. Looking at my hurting daughter, I told her, “If you can only remember Ethan after cancer, then you knew him at his absolute best. You knew a brother that handled something as horrible as cancer and handled it well by keeping his heart and eyes focused on Jesus. You knew a brother who showed us how to handle suffering with nothing but grace, courage, and a faith that was unshakeable.”
***
One of the shelves dedicated to Ethan in the library of Frank Seale Middle School.
Below the Biography section in the library of Frank Seale Middle School in Midlothian, Texas, and about 20 steps from the American flag, there's a bench and a light post. Uncommon items in a place filled with volumes of books. To the left of the light post sits a special, black book shelf. The books in it aren't ordered by author's name or the Dewey Decimal System. They do have something in common though: They are all Ethan's favorites.
"Ethan loved to read, as his books took him far from cancer," Rachel tells me.
There are books on Narnia, Hardy Boys adventures, and even Calvin and Hobbes. He never left home without a book. Pictures proving it — including Ethan reading on a New York City subway while he was there for treatment — proudly sit on the shelves.
As I stare at them, the librarian tells me the junior high schoolers meandering around us read his favorites regularly. There's one in particular that he loved. But today, it's nowhere to be find, checked out by a student.
"It's the Bible," the librarian says.
As she turns to go back to her office, the skylights above hit the bench perfectly, creating a sort of spotlight on some big, black letters on the seat back that form a quote — a quote that makes sense of the light post.
"I've come to learn even the smallest amount of light can overcome the darkest darkness."
The author? Ethan Hallmark.
The bench, light post, and book cases located in the library of Frank Seale Middle School.
***
Rachel Hallmark looks at her watch after a run.The hot, Texas sun was baking the ground outside when Rachel decided to go for a run. She's been doing that a lot in the last year. It helps her cope. On this day, it was all hitting her at once. Waves of memories were crashing in her mind, pooling in her eyes, and then rolling down her cheeks.
She decided to attempt her longest run ever. Ten miles.
For 30 minutes, she ran. For 60 minutes, she ran. For 90 minutes, she ran. Then her legs locked up. "Worse than ever before," she writes on her site.
She tried to continue, but didn't get far. The doubt was whispering as the pain was screaming. That's when she saw Ethan. His journey. His determination. His perseverance. She refused to quit.
She started running again, tears and footsteps hitting the pavement. "The physical pain may have caused a few of those tears, but mostly my heart cried out to God over the loss of my Ethan."
She turned the final corner to her house. As she did, something happened. The pain was replaced by peace. The labored breaths calmed.
"[God] always faithfully meets me on my runs, helping me not to run from the pain, but instead, helping me to run through it," she writes.
***
Hi everyone. This is Ethan. Thank you for all your prayers and please continue to pray for me. As most of you know, I've relapsed for a second time. Although these results were heart breaking for me, I am hopeful that God will perform another miracle. I feel like I only had a short break from this disease, just like when David was chased by Saul. As soon as Saul died, David's own sons started chasing after him. Even though I am being chased endlessly by this disease, God is right beside me through it all. Running this marathon is not easy, but I focus on the goal of eternal life.
***
It's the Wednesday before the one year anniversary. Rachel, Matt, our photographer Stan, and I stand in the kitchen talking about Ethan and the past year. She starts explaining what happened 362 days earlier. Not just in general terms, but in specifics. Rachel points to the couch. It's where Ethan took his last breath.
She cries. I cry.
But then something else happens: We eventually laugh. Then we laugh some more. We laugh a lot throughout the morning.
That's because the house isn't heavy. It's not depressing. It's not dark. There's isn't a cloud of death. Instead, there is so much life. Lauren, 12, Bryce, 9, and Caleb, 7, are playing in the other room. The dog is running outside. Matt and Rachel are smiling. The family has genuine joy, the state of mind that supersedes the peaks and valleys of simple happiness. There's pain, but it doesn't control them.
The Hallmarks. From left: Rachel, Caleb, Bryce, Lauren, and Matt.Something Rachel said a couple weeks earlier echoes in my mind.
"What's more powerful," She begins to ask me, reciting a note she once wrote herself, "that God cured him? Or that God sustained Ethan through his cancer and how he's sustaining us in his loss?"
One year later and it's not so much about how the Hallmarks are doing, its' more about who they are. They are grieving. They are coping. But they are living. And they are faithful.
—
View the complete slideshow of the pictures capturing the Hallmarks one year later here.
(All images via I Am Second)
Jonathon M. (Jon) Seidl is a writer, speaker, and digital media strategist. He’s the author of the #1 bestseller, Finding Rest: A Survivor’s Guide to Navigating the Valleys of Anxiety, Faith, and Life.
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