May 3, 2017
It was a sunny, beautiful Spring day. At about 8:00am, I was working on lights for Shrek Jr at CenterPoint Theatre. We were getting close to finished, I picked up my phone, and I had five missed calls and three texts from Wendy. The last text said:
“Please call me. This could be very serious.”
I called her, she was sobbing and asked me to come home. She sounded so pained. I asked her what was up, and she said let’s talk about it when you get here. And I asked again, “What is going on??”
“Payson might have leukemia. Come home.”
I don’t know how I stayed upright. I don’t know how I made my way to my van. I don’t know how I drove home. I do know that, in that two minute drive, I had Payson gone and buried and I was picking out cemeteries and funeral directors and who would speak at his funeral.
I got home and we collapsed into each other and we wailed for a while. She told me about her conversation with Payson’s doctor, this page of scribbled, frantic notes, the necessity of us going to Primary Children’s Medical Center immediately. She asked me to go get Payson at school.
It wasn’t a surprise that something was wrong with him. He’d had months of random pains, at different places all over his body. Muscles or ligaments or joints or something. The first time, we thought it was another kidney stone. Then, we thought it was a snowboarding injury. He had been to the doctor two other times. They thought maybe pleurisy, maybe arthritis? Wendy took him in on May 2nd because he couldn’t walk up the stairs anymore. He was pale and tired, but mostly he just hurt.
I remember walking into the office and asking them to page him down. I remember the mindless smalltalk, covering up everything with nothing. I remember seeing him in his backpack, carrying his lunch. I remember wanting to squeeze him and rewind everything and relive the almost seven years he’d been around. I remember walking out of the school, this beautiful Spring day, with this happy little kid who was almost done with first grade. I remember holding his hand, cherishing how it felt in mine, cherishing that he had such a great school to go to, wondering why I took that for granted. I remember him telling me about his day, wondering why he was getting checked out. I remember letting him sit in the front seat on the drive home (up yours, Leukemia!).
I remember our conversation with him at home, where we sat in the front room and told him we needed to go to the hospital so they could figure out what’s up, and how they were going to make him better, and could he please believe us so we could also believe us? I remember being overwhelmed by how strong Wendy was talking to him, how much love she had for him, how much that love seemed to overcome the impossible fear and weight of that moment.
On the way to PCMC, we, of course, stopped for Chicken McNuggets. This is what you do when you think your kid has cancer. It’s also what you do when you don’t think your kid has cancer.
I remember pulling into the parking garage, seeing spaces marked as for “Bone Marrow Transplant Patients Only,” wondering why that had never hit me so hard before. I remember walking in to that big, beautiful, terrifying, heartbreaking, hopeful building, and wondering how familiar we would become with it. I remember them telling us to go to “Hematology,” and Wendy being so offended that the clinic actually says “Cancer.” She’s like, that can’t be for us.
I remember the feeling in that little clinic, a little bald kid pressing the button to open the door and exit like he was way too familiar with the place. I remember going to a room with toys on the walls, trying to distract ourselves. I remember a parade of doctors and nurses, each of them unique and gentle and strong. I remember wondering why I was so desperate to trust them. I remember Dr Fluchel (who ended up being Payson’s main guy) coming in, checking things out, and asking Payson if he could feel his testicles.
I remember Payson’s reaction: “That’s kind of awkward, but ok!”
I remember being there a couple of hours, running labs on his blood, confirming that he had leukemia. I remember looking at Wendy and realizing our life just changed in ways we couldn’t even start to comprehend. I remember them telling us it was the good kind of leukemia, that treatments were very effective, that the outlook was possibly very good. I remember thinking how odd it was to be grateful for a better kind of cancer.
I remember needing to leave, to go tell our kids. I remember talking to Wendy for 90 seconds out in the main hall, hugging her, telling her everything she means to me, sharing the fear of having to tell our people about this, hoping that she understood how this unthinkable thing seemed OK because she was in it with me.
I remember getting to my van in the parking lot, sobbing for minutes and minutes, dreading the conversations that I’d be forced to have, the people I love whose lives I was going to add a burden to over the next few hours. I remember wondering if it was real.
I remember short conversations with my mom, with my dad, my siblings, my people. I remember apologizing to them, feeling so sorry for having to tell them this. I remember feeling the despair that the world was changing for other people, too.
I remember wondering how I could possibly tell my other kids about this, wondering what words were the right words. I remember wanting to fast forward three years, to see how they all were, to see how they’d borne this thing, to have some perspective that I could give them. Wondering if there was anything in the world I could do to shield them from this, to preserve their hearts, to avoid some of the hardest lessons of being alive. I remember gathering them around our kitchen table, telling them that Payson had leukemia. I remember their immediate reaction, the terror and fear and sadness. I remember the sound of the crying, just sitting there in a giant group hug in our kitchen, just clinging to them, the reasons life is so good, the answers to all of my doubts, I remember promising them things that I wasn’t sure of myself. I remember telling them that, no matter what, we are in this together, no matter what, and that’s all we can do. I remember telling them they are stronger than they realize, and they are going to learn it.
I remember them asking if we could say a prayer, and asking if we could go see Payson immediately.
I remember getting to the hospital, seeing Payson settle in so quickly, learning how to order room service and being amazed that he could have jello whenever he wanted.
I remember watching reality sink in for us, and realizing so early on that life never stops.
I remember leaving the hospital, being so not hungry yet feeling the carnal drive to go to Hire’s and consume all of my feelings. I remember sitting around the table there with my four oldest, sitting in silence, our imaginations running wild. I remember it taking forever for the freaking food to arrive. I remember starting to eat, starting to talk, starting to laugh. I remember missing Payson.
I remember getting home, laying in bed, texting with Wendy, being too tired to sleep. I remember, even then, this overwhelming feeling of peace, of gratitude.
I bargained with God 1,000 things that night. And I thanked him for as many things as I could remember. And I knew my life wouldn’t ever be what it was.
It’s difficult to believe that only a year has passed. It’s been impossibly long. I’ve spent a lifetime sitting outside, drinking TaB and smoking animals on the Traeger.
I’ve spent a zillion moments being overwhelmed and humbled and shamed and uplifted by the raw kindness around me. It’s impossible to be thankful enough for it all, for everything. The way we’ve been loved and cared for and shielded and sustained.
I’ve spent a million hours laying on the front lawn, looking up at our big maple tree.
I’ve spent a thousand nights watching my kids sleep, dreaming about their future, trying to make sure I’m getting it right. Our whole family got diagnosed with this thing, all of us placed into a category. We’ve done our best to not be defined by it, and in lots of ways I don’t think we’ve been aware enough of how other people see us because of this thing we are sharing. But, we are a family with cancer. Now let’s do something about it.
I’ve spent a hundred days worried about Payson’s temperature, about his blood counts, about how often he’s peeing, about how many times he’s barfed, about his weight, about his paleness, about the loss of his muscles, about his chubby cheeks, about his bald head, about the sores in his mouth, about his medicine, about his funny walk, about every single of the 70 zillion germs in the world.
I’ve spend every week cursing the Sticky Stuff and wanting it to take human form so I can huck a hatchet at its nether regions.
I’ve spent 52 Sundays, about half of them being angry or hurt or just plain pissy with my wife for no reason. I don’t know why Sundays have been so hard on us. Like, Sunday is supposed to be the best day, the gratitude day, the lovey-dovey half hour of quiet time after church heck yes day. But every Sunday, for some reason, either Wendy or I would wake up aching for a fight or craving to be left alone or just trapped in a glass cage of emotion, or whatever. We aren’t like that. We are never like that. And we’re so stupid that we’d never relate it to the fact that, you know, sometimes it’s hard when your kid is sick. So, we’ve gotten really good at talking about our feelings, way better than I ever wanted to. And, we’ve gotten so good at being grownups and not totally freaking out about super important things like why we don’t want to share our chicken strips sometimes.
I think I’ve learned something about compassion, about the kind of person I want to be.
I’ve learned about accepting help, even when it’s awkward and embarrassing and makes you feel weak.
I’ve learned about cherishing my people, about wanting to be my best for my best.
I’ve learned about how few things matter. So many things don’t matter. Almost everything doesn’t matter.
I’ve learned that the things that matter, they matter the most, and they always should and always will.
I’ve learned that we get to choose how we feel about the lessons we learn.
I’ve learned that even a fat man can put on 30 extra pounds by eating his feelings all the time.
I remember a few days after Payson was diagnosed, while he was still in the hospital with Wendy, I was home with the kids. It was early in the morning, still dark, and I couldn’t sleep. I remember sitting in our front room, mindlessly looking out the window, lost in the overwhelming sadness, totally unsure of the future. As I sat there, very lightly over the mountains, there was this outline of purple, almost imperceptible, but stunning. I watched as that purple became blue, as the blue started to become orange and red, as the sky above turned from black to gray to clear blue. And then suddenly, the sun rose, just the very top of it peaking over the mountains, and I was blinded by it’s brilliance. Immediately, everything was bright and clear. Everything that was dark was gone. I’ve never watched a sunrise like that.
I was so grateful the sun came up that day. And it keeps coming up. Every day for the last 365 and every day for the next four years until he’s out of the woods, and then every day after that. The sun keeps coming up.
Payson turns 8 in four days. He’s finishing up second grade, with the kids who missed him the first half of the year. He has crushes on girls. He plays with his older siblings’ friends. He’s the shortest boy in his grade, but he’s friends with the tallest. He does his chores. He’s in plays, he’s obsessed with basketball, he’s tan and he’s strong. He runs every day. He’s getting baptized on June 2nd, and every person in the world is invited to come celebrate with him.
In all of this, in everything that’s happened, this vortex of pain and heartache and fear, this overwhelming outpouring of pure love and kindness and humanity, in the middle of all of this is this little seven year old kid who is entirely unaware of what an inspiration he is, of the mountain of support that sustains his family, of what kind of lessons he teaches, what kind of hope he gives. He’s just him, doing his thing.
And the sun is up.
Let’s kick this pig.