We flew northwest from Philipsburg over the Moshannon State Forest, a place that had been rescued from disaster by the love of land in our community. In the 1800s the lumber barons clear-cut this beautiful land, leaving only stumps, decimating the wildlife, and encouraging erosion and fire. In the beginning of the 1900s, people saw this error. The state bought up the land a piece at a time, and gradually restored the forest. Although I’d never say something this sentimental to Kari, then or now, she had reclaimed me, too. When I met her, I was a man who didn’t see his future, but with her at my side, I saw it clearly. We were well suited to each other in the way that our strengths and weaknesses nestled perfectly together. We also both loved the place where we were born. It seemed perfect to me to be swooping over the beauty of western Pennsylvania when I decided to ask her to marry me. A few days later, I purchased an engagement ring, bought red roses, cooked her dinner, and asked her to be my wife.
A decade later, on our date night in Hershey, we walked hand in hand into Fenicci’s, and the owner, Phillip Guarno, treated us like family. It turned out that his daughter had had neuroblastoma, a cancer of the nerve cells, most common in infants. His daughter was better now, but he and his wife, Kveta, had been through what all the parents on the cancer unit were going through, and he wanted to give them the best time he could offer when they managed to get away from the hospital.
They sat us in a beautiful booth at the best vantage point in the restaurant and brought us appetizers on the house. It was a comforting room with soft lighting and hushed voices. As I looked at Kari in this light, it did feel like a date, and we were comfortable in a few minutes of silence that allowed both of us to let some of the stress fall away. Every time we’d gone away from the hospital before, all we talked about was the one subject that we thought about all the time: Emily. There didn’t seem to be anything else as urgent. I didn’t know how we’d answer Nurse Karli’s challenge.
“We have to take care of our marriage,” Kari said, echoing Nurse Karli.
“We do,” I agreed. “It’s the most important thing, after Emily.”
“Sitting here, it feels hard to know where to start or what to do to make it better.”
“I don’t think we have to do much differently,” I said. “Maybe what we’re doing already is enough as long as we understand. Like you have a certain part of it that’s yours and I am in charge of a different part, and in those areas, we never question each other’s judgment. Sure, we talk about it, or maybe even joke about it, but we don’t argue or second-guess.”
“Well, you know me,” she said. “I am comfortable in research. I want to read the research studies and talk with other parents about how treatment is going for their children.”
“You know that world so well, Kari,” I said. “You’re thorough and when you tell me how you came to your opinion, I always admire how careful you are to consider everything you learned before you state what you think. And how you take notes on everything the doctors tell us. I trust you there, and I trust you on the blog, too. You’re doing a great job there.”
“Thank you. You know I want you to feel free to write, too,” she said.
“I will once in a while, but I know you are doing it and I think there is something in you that needs to do it,” I said.
“Yes. Some days seem so unreal,” Kari said. “Putting down what happened every day, telling this story, helps me make sense of how one action leads to another. And the numbers—how her lab values fluctuate—the story that tells, too.”
“These are your jobs. Perfect for you,” I said. “What’s left for me?”
“You’re in charge of hope,” said Kari with a smile.
I smiled back so wide. This was the perfect job for me. Being in charge of hope justified my terrible jokes and my stupid antics. Also, seeing as how hope was my job, I could handle pain with Emily in a way that Kari could not, because I could feel what was happening right then, but I had my eyes on the future when the pain was gone.
I was pretty pleased with our division of labor.
When we walked back to the hospital, we were more strongly connected than ever. We would fight in the future, of course, but our mutual respect and love were unquestionable.
That next day we got good news. The doctor said that when they took Emily in for her leg surgery they might be able to take the wound vac off the right calf. The left one, well, they weren’t so sure about that one.
I wanted them both off so we could take Emily home. If the other wound vac remained on, we would have two more days with it on and then a few days after that to make sure the infection was gone, meaning at least another week in the hospital. That night after Emily fell asleep, I rummaged around in our stuff and brought out my mom’s little drawstring bag that held the prayer cloths and the holy water and oil. Kari was looking at me from across the room with a sarcastic smile.
“Shhhhh!” I whispered to her. “I’m in charge of hope.”
I rubbed a little holy oil on the prayer cloths and laid one on each of Emily’s wound vacs. Then I walked down the side of her bed, sprinkling the holy water from Lourdes on
