Nicholas was alive. After a bone marrow transplant for leukemia at the University of Iowa, our son’s new immune system was building. Nicholas, our seven-year-old, had nearly died following the transplant. He developed a virus that began multiplying and choking off what little bone marrow production he had. I asked the doctor, “Do I need to call in Nick’s grandparents and the rest of the family?”
“I can’t say,” the doctor replied. “We’ll know more this evening.”
Later that afternoon, the chaplain came to visit. My wife, Vickie, and I were deeply frightened, and after some conversation, we asked her to lay hands upon Nick and us for healing. Later that day, Nicholas turned the corner. Six weeks later, we packed up our van and brought him home to the awaiting celebration. Friends and members of our church had decorated our house, cleaned it from top to bottom, and filled the pantries. We were frightened and joyful, but we celebrated our homecoming.
Two-and-half months later, Vickie and I heard the words from the oncologist that made us weep for joy: “Your son is in remission.” The news washed over us like a long-awaited, late-summer rain. The next evening, however, just before I left the house to lead the Bishop’s Committee (governing board) meeting, the phone rang. My wife picked it up. I watched as she turned ashen gray and began to cry. It was the oncologist. Further microscopic analysis of Nicholas’s bone marrow, he said, revealed four leukemia cells.
“What does this mean?” Vickie asked, desperate.
“Nothing is for sure,” the doctor said. “You will need to wait two weeks for Nicholas to take another test.”
After a brief moment in quiet panic, Vickie and I quickly decided to buy time; we would not tell anyone outside our family. I left for the Bishop’s Committee meeting.
That evening, the church budget, repairs to its buildings, and various people’s private agendas-all seemed trivial. As others debated, my mind fought to accept the unfolding truth. I wanted to tell my leadership team the incredible burden slowly crushing my heart. But the doctor seemed to hold out a slim chance of hope. There was no point in getting people all riled up. And if the test confirmed Nicholas’s imminent death, I wanted him to learn the news from me or his mother-not from someone else.
Decision of dignity
Two weeks later, we returned to the Iowa clinic. I parked the car on the top floor of the parking garage and took Nicholas in my arms.
“Do I have to have a test today?” he asked.
“Yes, a bone marrow.”
“I knew it!” he cried. “I knew it since you and Mommy came today! Is it back? Is the leukemia back?”
“We think so.”
“Am I going to die?”
I felt time freeze. “Yes, I think you are going to die.”
Within three hours our fear was confirmed: the leukemia had returned. In a long conversation, the doctor gave us three options: another transplant, conventional chemotherapy, or no further treatment. In each case, the outcome would be death: if a transplant, probably by pneumonia; if chemotherapy, by toxicity. Without any additional treatment, Nicholas had three to nine months, depending on how rapidly the disease spread. The doctor gave us a week to decide.
The next Tuesday, when I walked into the kitchen to eat breakfast, Nicholas was sitting on Vickie’s lap. Tears streamed down her cheeks. I knew what had happened.
“He doesn’t want any more treatment, does he?”
Vickie, her eyes red, said, “No, and he’s afraid we’ll be disappointed with him.”
My heart burst. I wanted to respect Nicholas’s wishes, but I also wanted to fight. Nicholas, however, had said that he’d had enough. He knew he was going to die. He wanted only to know if he could make it to Christmas.
As I write, the memory of the powerlessness I felt makes me to want to scream. It seemed strange to let a seven-year-old decide his future. After much soul-searching, and strong opposition from the medical community-the transplant doctor viewed the choice as giving up-we agreed not to pursue any rigorous treatment.
I agonized to accept Nicholas’s decision. I needed assurance that all options had been exhausted. I got on the phone and talked to top childhood leukemia specialists all over the world. Every one reaffirmed our oncologist’s prognosis: Nicholas would die.
Unequal tragedy
As the tragedy unfolded, I struggled between fulfilling parish obligations and spending time with Nicholas. My work-day consisted of early mornings and late evenings. The phone would ring at my church office about 9:30 a.m.
“Hi, Dad!”
“Hey, buddy, how do you feel today?”
“Pretty good.”
“Well, what’s the plan? Galaxy World game room? Shopping?”
“Let’s go to Galaxy World.”
Home I went, and out we’d go. Our trips lasted for a few hours, and then Nicholas needed rest. So did I.
Most people in the church graciously accepted the new realities of my work schedule. But not all. Over breakfast, one man told me, “Some people think that these daily activities you’ve planned with Nicholas have been simply to raise your own profile-to meet your needs, not his.”
Flabbergasted, I retorted, knowing the answer full well, “Have you ever had one of your children die? Then how would you know? All I’m trying to do is give him the best I can. I resent your implying that all his wishes are for my own aggrandizement. Even if you’re partly correct, don’t I have a right to share a few experiences with my dying son that meet my hopes? I think so!”
Our breakfast came to a social but quick end.
Only now do I realize how angry I was. I thought I hid it well. But one day, a church leader said, “Anger has no place in the life of a minister. Don’t you believe Nicholas will get better?”
“Nick will get better,” I replied.
I didn’t believe it. I became even more angry at my hypocrisy. My son’s life was slipping away; I could do nothing to stop it.
The few critical people, however, were counterbalanced with the majority in our congregation who knew Nick was dying, and were just as afraid as we were. Every couple months I, or my wife and I, would sit following the service and answer people’s questions. I often saw tears in the corners of their eyes and the look of shared sadness.
Shortly after Nicholas had been diagnosed, we brought him home to recuperate and begin his chemotherapy treatments. That afternoon, while taking out the trash, I was bowled over by the thought, There are no guarantees in life. I had managed to hold on to the belief that tragedy was doled out evenly; I thought that once I had my quota, I was done. The implications were crushing: Tragedy in one area of my life is no hedge against more suffering.
Inevitably, my work at church became a low priority when Nicholas relapsed. The bishop suggested I take a leave of absence. I addressed the Bishop’s Committee, “The bishop has offered me a leave of absence. What do you think?”
All responses were various forms of no: “We don’t want you severing ties completely. That would be worse than even marginal contact. We’ll take whatever time you can give.”
So I turned down the bishop’s offer, a big mistake. Torn between supporting Nicholas and leading a parish, I felt inadequate at both.
Death of a gift
One night in the hospital, three weeks before he died, Nick told me he was afraid. He wanted to know what was going to happen. I reassured him of his place in heaven.
“But Dad, I won’t be able to be with you and Mommy and Sissy anymore.” Nicholas begged, “Can’t you put my body at the end of the bed or bury me in the backyard?”
“No, Nick, we can’t do that,” I said. “Mommy and I promise that we will be buried on either side of you. And we promise to remember you all our lives. We’ll celebrate your birthday every year, including a party this year.”
This seemed to comfort him; we never talked about death again.
The day before his death began as usual: Nick lying in bed, moaning. About 10 p.m. he went to bed in his room and soon began to have difficulty breathing. I tried to give him oxygen, but each time he refused. Panicked, we called his nurse. Nick was choking on body fluids.
We kept vigil, watching him fight for every breath. When his choking became unbearable, our nurse administered a drug to help him relax. Once it took effect, Nicholas calmed down, and died.
Nick’s death should have been serene, with gentle music playing in the background. It wasn’t. Vickie and I screamed in agony; we felt cheated, scared. As the tears subsided, we patiently washed Nick’s body and anointed him with oil. We lit a candle, prayed, cried some more, and tried to keep our sanity.
My wonderful son, this wonderful gift from God, was dead, only three years after being diagnosed.
Nicholas was buried Tuesday of Holy Week. Easter Day dawned unusually warm and bright. Late that day, Vickie and I sat on our front walk watching the sunset. Our two-year-old daughter, Hannah, played in the yard. “What do you think Nicholas sees right now?” I asked. “Do you think he sees this sunset?”
“He sees an even more beautiful sunset than we can see,” Vickie replied.
After a long pause, I asked her, “What if this is all there is? What if dead is dead is dead? What if life does come to an end? What if Nick is no more?”
A long pause followed. “You may be right,” Vickie answered, “but I choose to live my life believing it is true.”
No single decision I’ve made has been as important as following my wife’s decision. I would celebrate the resurrection as a defining reality of life. Yet, in the ensuing months I fell deeply into despair and depression. I questioned God, I wondered about life. I wondered how I could teach the Christian faith when I didn’t feel as if I had any myself.
The issue I faced wasn’t about truth; it was faith. Deep inside, I knew that without faith I’d never recover. Time and time again I had to remind myself of our decision that Easter Sunday. On some days I reaffirmed it every ten minutes.
No longer normal
Out of guilt, I quickly returned to a fairly regular schedule at church. I still felt sad and empty, but I could do nothing to stop my tears and anger. Everything seemed trivial and meaningless. People didn’t know how to reach out to me, nor I to them.
One day a woman called. I could tell she was crying. She said, “My dog just died.”
“What?”
“My dog just died. I know this isn’t like losing a child, but this animal has been my comfort for years.”
Through clenched teeth, I politely said, “I understand” and “Thanks for letting me know.” Then I slammed the phone down. I could not see how her pain measured up to mine.
Days passed into weeks and months. The people in the parish seemed to draw one of two conclusions. Some acted as if their problems could never measure up to the severity of our losing Nicholas. One Sunday I noticed a woman, who looked weary, crying often during the service. After worship, I approached her. “I’m concerned about you,” I said. “Is anything going on?”
“My mother died about three weeks ago, and my husband was recently informed that his job will be terminated.”
“Oh no! How come you didn’t let me know?”
“Well, compared to your loss,” she replied. “I didn’t want to burden you. Your loss is so much more serious.”
Others seemed to grow impatient with my slow recovery. One Sunday, a man asked if we could talk privately. Curious, I asked him what the congregation was saying about me off the record.
“Most people understand what you are going through right now,” he said, “but we look forward to the old Al returning again.”
“My old self will not be back,” I said. “I have no idea what the future holds. When Nick died, a part of me died. My life is changed-I cannot return to how it was before. I cannot go back to two kids, both healthy. You can’t imagine how much I wish I could.”
He didn’t understand, nor did I, that healing takes time.
I grew increasingly uncomfortable with the church situation. The questions exploded: How could I explain that my life had changed in a fundamental way? My old life had been cast aside with one incredible event. How could I alleviate the anxiety and uncertainty in others when I was overwhelmed myself? How could I tell the people I loved for nearly eight years that the old me would never return? And how, steeped in my own grief, could I lead a parish to grieve?
The church naturally wanted life to return to normal as quickly as possible. I no longer knew what normal was. The parish hoped Vickie and I had hit bottom; my sense was that we were only starting the glide downward.
Preaching intensified these pastoral dilemmas. I forced myself to sound faithful when I didn’t believe. My struggle to make sense out of this experience led me to use in my preaching examples from Nick’s life. One Sunday a long-time member said, “I’m uncomfortable coming here for worship.”
“How come?”
“Nicholas. Frankly, some of us are tired of hearing about him. It hurts too much. I don’t want to come to church to be hurt; I want to leave feeling good.”
“I don’t know what to say,” I replied.
“Isn’t there anything else from which you can draw examples?”
“Probably,” I said (which meant “No”).
A far deeper question remained, however. It had to do with what I avoided (or did not know how to address within me) and therefore avoided in my preaching. Where was God throughout Nicholas’s illness and death? How could I accept all that Nick suffered, given that death was still the outcome? How does pain fit with living the victorious life? And who is in charge of the world? Where is my son? Will I ever see him again?
A huge wall of pain had settled between the congregation and me. Neither of us knew how to enter into that pain. We certainly didn’t know how to do it together. Perhaps given time, we would have. But I was tired. I had taken so much time off between the bone marrow transplant and the final days of Nick’s life, I felt guilty asking for more. I struggled to listen, pray, preach, and lead. I did not know what to do with such powerlessness and grief.
Message in a critic
Eleven months after Nick died, we received a call from another parish. Vickie and I agonized over whether to make the move. I wondered if doing so was the coward’s way out.
The parish I served was young, dynamic, and growing. After Nick’s illness and death, I felt tired and old. I didn’t have the energy to lead anymore. The church was also entering a stretch of whitewater. The close-knit core group who helped start the church was being outnumbered by new people, a classic case of the pioneers being overrun by the settlers. In addition, our church was at the two-hundred barrier, so my role as pastor was changing. I couldn’t bring myself to redefine my role.
Vickie and I also wanted to place some distance between ourselves and the constant reminders of how life was before Nick died. Seeing all the children with whom he had played each Sunday was more than we could bear. We wanted to remember the fullness of his life. Seeing Nicholas’s buddies reminded us of illness and death.
Perhaps what clinched our decision was the man who, while Nick was still alive, criticized me for spending so much time with him. When Nick finally died, this man and his wife actively began to reject me. They would come to the altar rail and then refuse to receive Communion from me. But it wasn’t so much his rejection of me as it was the lesson I learned from his background. Through bits and pieces of conversations, I picked up that his father had been a minister who was apparently involved in a tragedy while serving in his first church. His family stayed in that parish for thirty-seven years, living with the reminders of what had happened. The father, paralyzed by the guilt, was apparently unable to move forward. His son, many years later, still resented it. I saw in him a message he didn’t have the words to say: Move on. I realized that, if nothing else, as long as we were moving, we were not sitting still, declining, or dying. It was worth a chance.
In spite of our critics, Vickie and I loved that church family. But the decision to move, to put the darkness of Nick’s death behind us, seemed best. As we made the decision to accept the new position, we prayed the church that called us would allow us space to heal.
Shattering and awakening
Our move was only thirty minutes away, to another parish in the Chicago area. But it might as well have been 3,000 miles away. The biggest change was that instead of being tired of hearing of Nicholas’s life and death, the congregation seemed to want to hear me tell our story. The story was fresh, and it revealed to them the heart of their pastor.
Seven years have passed since Nicholas’s death, and I’ve learned that healing happens the more you tell the story.
Nicholas’s death has led me to two powerful experiences of faith. The first was the shattering of faith. I recalled Chuck Swindoll’s description of this spiritual place: When faith is shattered, it is time to rely on the faith of others, for my faith was gone.
The second experience, equally powerful, was an awakening of faith. Today, this faith enables me to go on in the face of overwhelming fears for my surviving children, the continuing pain of grief, and a laundry list of unanswered questions.
Shortly after Nicholas died, I attended a preaching mission on the South Side of Chicago. The lead speaker, Dr. James Forbes, remarked that, “You’ve got to find time for the pain.” I felt as if the hand of God reached in and touched my heart. I rejoiced over the apostle Paul’s words, “I reckon the sufferings of this present time are nothing compared to the glory that shall be revealed to us.”
The path to recovery continues through the pain. Nicholas taught me that life is filled with pain. As I stand in front of people each week, I am more aware that many, if not all, hurt.
And only now do I realize how important my choices along the way were: The choice to accept my son’s decision to die with dignity; the choice to “fake it till I make it” with faith; the choice to move; the choice to believe that God will heal; the choice to accept that healing; the choice to live and trust new life.
Alvin C. Johnson, Jr. is rector of St. Michael’s Episcopal Church in Barrington, Illinois.
1996 by Christianity Today/LEADERSHIP, journal.
Last Updated: October 8, 1996
