“Daddy, I want you to promise you’ll tell me if it’s going to hurt,” she said.
“We will. If we know it’s going to hurt, we’ll tell you for sure.” I said.
“That’s good,” Emily said. “Are you and Mommy going to stay with me?”
“We are,” I said. “We’ll be with you at the hospital to make sure that the doctors get you better fast.”
Emily put her little hand over mine and leaned into me. I put my arm around her waist tenderly, remembering all those bruises, and searched my mind for what I could say that would soothe her. I know about being very sick. My Crohn’s disease, an inflammatory bowel disease, was diagnosed in my twenties, and the stomach cramps, joint pains, and lack of appetite nearly killed me. I learned that a positive attitude can help. How could I get her to feel that way?
“You know, only the strongest children in the world are picked to fight cancer,” I told her, “And you’re going to beat it, no matter what.”
I had said the wrong thing. Suddenly Emily looked confused and scared, like she was about to cry. No one had said the word cancer to her before it came out of my mouth. She was fighting her tears just as I was fighting mine. I had thought I was the one who needed to be strong for Emily, but I recognized then that I had it wrong. Sometimes Emily needed to be strong for me. I drew her a little tighter to me.
“Being afraid doesn’t mean that you are not brave,” I said. I was stroking her hair slowly, using that rhythm as my anchor to the world, and my tears receded. “We will all cry. We can all cry together.”
The nurse came in to check Emily one last time before we put her in the car for the drive to Hershey. Before we got on the road, we swung by the house to pick up a few things and to take Pam back to her car.
When I had finally talked with my mom that afternoon, she’d volunteered to go to our house to pack up what she thought we’d need in Hershey. We had no idea how long we’d be at the hospital. I think of my mom as an angel on earth, someone so generous and openhearted that it’s hard to find a moment when she’s not doing something for others. Her way of handling pain and fear is to stay busy helping out. When we got to the house, we found that Mom had packed a duffel bag for each of us, a few bags of snacks, a box with some of Emily’s one hundred stuffed animals, and a bag filled with books and crafts. I loaded the duffels in the car, but something told me to toss in my hunting binoculars. I had no idea how I’d use them in a hospital, but I grabbed them anyway. Then, just before we got in the car, I told Kari to hold on a second because I wanted to get something else. I ran upstairs to our bedroom and opened the drawer where I kept the Saint Christopher medal my grandmother gave me when I’d gotten sick: an oval of silver on a thick chain. It is a pure silver casting of Saint Christopher with the child up on his shoulder, the one he carries over troubled waters, and the words “St. Christopher Protect Us” etched in the oval that surrounds the saint. I wore it all the time when I was looking for a doctor to cure me. When my grandmother and I prayed for my Crohn’s disease to heal, I always held it between my thumb and my forefinger. I wanted to have a link to my grandmother’s prayers for my health, which had worked. We needed the same for Emily. I tucked Saint Christopher in my pocket, and then we got going while Emily dozed in the back of our SUV.
Kari and I didn’t talk much during the drive. Kari was drained. I wondered what she was thinking, but I couldn’t ask because my own mind was so full of worries. How could we do this? What were we going to do about work? How could we support ourselves? I couldn’t think about the money. This was going to cost so much more than I could ever imagine. But it didn’t matter. We would do whatever it took to have Emily survive. They could take every material possession I had—the house, and the job, everything—as long as they saved Emily. Our families would help us. Our community, too.
Then I looked at Kari. I worried this was going to be more than she could handle, because Emily was everything to her. I could not lose my daughter, or I might lose my wife, too. Pull it together, now, I lectured myself. Be their rock.
Kari and I would have many decisions to make, and I hoped we would agree on the best course for Emily. Kari is a scientist, a dietitian with a master’s degree in nutrition, who is comfortable in the data, the facts. For me, science holds the cure, but it was not everything. In my battle with Crohn’s disease, sometimes I have had to defy my doctors. One doctor close to home predicted I would die young because my case was so severe. But when I held the Saint Christopher medal between my fingers, I sensed something—something whispered to me. I somehow knew that there was a specialist out there somewhere who didn’t feel the same way this doctor did. I searched until I found a specialist with a treatment and a surgery that saved my life. Science saved me. But I wouldn’t have found that solution without listening to those whispers.
Ever since I got sick, my decisions have been guided by these whispers. The word whisper isn’t exactly right
