From the Archives: That’s What We Have Right Now. Hope.

My dad arrived a week before Christmas. Initially, when Shawn was diagnosed, he’d offered to come in January for the duration of the chemotherapy. Shawn and I thought it would take about six months, and my dad could help our family until the worst was over.  

What we didn’t know was that my dad had different plans. After he saw the scans that were taken a few days before Shawn’s colonoscopy, he knew it was much worse than we realized. I didn’t know till later that he’d sat at his computer in his living room and held a printout of the scan, crying as he looked at it.  

My dad knew loss. My mother’s depression had wracked not just her mind but also her body, and they had both weathered many years of hospital visits and experimental treatments before she took her own life. He knew what it was like to raise kids with someone really ill in the house; my younger sister was a newborn when my mother was diagnosed, though it wasn’t until we were teenagers that she became partially bedridden. As my dad held the scan of Shawn’s torso, he thought about my road ahead. He knew some of the very real challenges that we would face, not just because of Shawn’s illness but also because of the logistical challenges of raising young kids through it.

He thought Shawn had less than a year, and most likely would die by the summer. But he didn’t tell me this for almost two years. When I asked him why he’d withheld this information, he said, “Marjorie, doctors can never really be sure when someone will die. We make predictions, but sometimes we are wrong. I knew I couldn’t tell you. It would just destroy your hope—and you needed hope.”

Throughout most of December, Shawn and I both maintained that sense of hope, and various family members and friends helped us run our lives. But Shawn’s discharge date kept getting pushed back, and the help was running thin. My dad kept telling me he could come anytime, but he didn’t want to push. He never wanted to push.

One day, exhausted by the logistics of the third week of Shawn’s hospitalization, I called a friend from the main hallway of the hospital. It was always cold there, as though the warmth from the patients’ rooms couldn’t quite reach the main waiting area. I covered myself with a scratchy hospital blanket. “I don’t think I can do it by myself,” I said.

“Then you have to call your dad,” my friend replied. 

So I did. I only needed to say 3 words: “I need you.”

My dad and my aunt Nancy got the next flight out. He arrived at the hospital shortly after his plane landed, stopping only to drop Nancy at my house and say hello to the kids. He had spent periods of time with Claire, Austin and Tommy throughout their lives, but in many ways their relationship was a typical one: he asked about how school was going and listened to their replies, they cajoled him into making cookies and letting them eat them before dinner, he let them stay up later than they might if they were with me or Shawn. He loved them dearly, of course, but he loved them like a grandfather. He was removed from much of their daily lives.  

He wasn’t here for them this time, anyway. He was here for me. I was sitting in the hospital chair as he opened the door. He didn’t have a coat, but he wore a wool sweater with his grey sports coat and newly pressed slacks, and he looked every bit like a doctor making rounds. 

“Dad,” I said, unable to get much more out. I didn’t want to cry in front of Shawn.

“Hi, Marjorie,” he said as he hugged me and then he turned to shake Shawn’s hand. They always did this. Both men were tender with me, but didn’t show much physical affection with each other.

“Thanks for coming,” Shawn said. His beard had grown long and uneven, I realized, and it was much grayer than it had been just a month ago.

“I’m sorry it has to be under these circumstances,” my dad said. Then they discussed some of Shawn’s drugs and his hopes for getting out of the hospital before the new year. As they talked, I studied both of them. I hadn’t thought about it much over the weeks, as I’d rarely left Shawn’s side, but he had become really thin. I had seen my father and Shawn next to each other in the past and it had always been obvious that although my dad was fit for his age, he was the older one. But now, that wasn’t so obvious. Shawn even seemed to be acting older, I thought, as I watched him take a full minute to drink a bit of water from the cup by his bed. At one point, my dad helped him sit up, something that jolted me out of the sleepy state I was in. It was a natural thing to do—Shawn was the patient, and my dad was the doctor—but it was very odd to witness.

“You should go home,” my dad said to me after they finished talking. “You look exhausted. Go get some rest. I’ll stay here overnight.”

“But you don’t have any of your stuff,” I said. He hadn’t arrived at the hospital with even a small bag.

“I don’t need anything,” he said. When I hesitated, he said, “Go home. You need to get some rest so you can keep going. It’s a long road ahead.”

I realize now that he wasn’t really talking about the next few weeks, ones filled with nausea and blood and pain and everything I didn’t want to think about at that moment. No, he wasn’t talking about the long road ahead at the hospital. He was talking about the years that would follow.

I couldn’t comprehend what he was saying to me, mostly because I didn’t want to believe the reality I was facing. Even then, faced with the worried looks of the doctors and the Google searches that told me Shawn had an 8% chance of survival, I held to the optimism I’d learned from my father. There was a chance it would be okay, I reminded myself.

I didn’t want to see the trouble that was there, even when it was staring me in the face.

……

A few weeks went by, and we developed a routine – I’d leave the hospital in the evening, go home, and then my dad would head there to be with Shawn. One late night, I was standing in the hallway outside the kids’ bedrooms and I heard my dad say, “They’re already asleep,” as I peeked in on them.

I leaned against the wall. “Happy New Year to me,” I said, pretending to bang my head against the wall. It was cold in our house. I had spent the day at the hospital and it occurred to me only at that moment—two weeks after my dad and Aunt Nancy had arrived—that I never taught them how to control the thermostat. What had they been doing all this time? Just putting on a sweater and giving the kids extra blankets? Did they really think it would disturb me to ask about this detail? Or were they just as busy as me, unable to focus on something like that?

Maybe everyone liked it better that way. It certainly made it nice for sleeping. All three kids were buried in piles of blankets.

I took a deep breath in the hallway. I could almost see my breath.

My dad looked at me for a long time, and though I knew he wanted me to say something about how I was feeling, I could only think about the thermostat. I wasn’t even sad, really. I was just tired. Shawn’s illness and treatment had stripped me down to a raw state, one where I couldn’t really care about anything beyond getting through each day. 

“I’ll head to the hospital in a few minutes,” my dad said eventually, moving his body just slightly as though he knew he needed to go, but was hesitant to actually leave the space where I stood.

It was the end of December, and things were going downhill. Shawn’s body was weak, but the worst part wasn’t his atrophied muscles or thin face—it was the way the whites of his eyes were changing each day. It was hard to ignore yellow eyes, the most obvious sign of liver failure. That day at the hospital with Shawn had left me with new clarity about what was happening. I couldn’t hide from it.

“I think he’s dying,” I said to my dad. It was the first time I said it out loud.

“He’s sick, Marjorie,” he said, fidgeting just slightly.

“I know, I can see it. Give me something here, Dad. Is there anything else the doctors can really do? Are we really at the end of our options? Is it time to give up hope?”

“Right now, we have to hope,” he said, uncrossing his arms and putting a hand on my shoulder. “We have to have faith. We have to pray for a miracle. That’s what we can do.”

My dad was a rational man. When option A didn’t work, he moved onto option B, and then option C. But with all options exhausted, he turned to faith. That was what was left. I so rarely heard him talk of faith in a medical context that I didn’t know what to make of it. I looked at him skeptically.

He looked right back at me, his eyebrows raised, as if to make a point he needed me to hear. “It happens, Marjorie. Sometimes, there’s a miracle. And we have to hold on to that possibility. That’s what we have right now. Hope.”