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2007-08-07 issue:

Homeward bound

A 20-year-old chooses not to have life support.

by Steve Steiner

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Tuesday I was on an early morning flight from Cleveland to Wichita, Kan. The night before, we had received a call that our 20-year-old son Paul was in the hospital with serious health problems due to lupus. Paul’s kidneys were so weak and diseased that he would need to leave college. I was afraid. How could I help him walk through this struggle of shattered dreams? Paul had experienced so much pain in his childhood years as an orphan in Guatemala—and now this. I cried.

“Hi, Dad,” he said as I walked into his room. “It’s good to see you.” We talked a bit about the family before he said, “Dad, I have some business with you. When it’s time for me to die, promise me you won’t keep me hooked to machines. Let me go be with Jesus. Dad, promise me.”

“I’ll do my best,” I said.

Paul went on: “I want to tell my birth father in Guatemala that I forgive him for killing my birth mom and that I love him. I want to tell him about the joy and peace I have in Jesus Christ.”
I was amazed. “Paul, you’ve changed. What happened?”

“Last Thursday night, Jesus came to me in a dream. He was right here in my room with outstretched hands, asking me to come home. Dad, you would not believe how beautiful heaven is.”

“What did you tell Jesus?” I asked.

“That I could not go yet.”

“Why was that, Son?”

“Dad, I need to tell my birth father I forgive him for all the things he did.”

“Paul, we’ll do everything we can to find your birth father,” I promised.

Midafternoon, three of his friends stopped in to visit. While we talked, Paul fell asleep. In his sleep he talked inaudibly, weeping as he spoke. The four of us, not sure what was happening, softly sang familiar hymns. When Paul woke up, I asked, “Son, what were you dreaming?”

“Jesus came to me again and asked if I was ready to come home.”

“What did you tell Jesus, Paul?”

“I’m ready.”

The next morning, when I returned to his room, I found that Paul had a fever and was uncomfortable. As his temperature rose, his blood pressure dropped. I read Scripture and prayed with him. Late in the night, Paul said, “Dad, if I can’t urinate, does that mean my kidneys quit working?” When I said it probably did, he said, “Remember, Dad, I don’t want to be kept alive with a machine.”

On Thursday morning I called my wife, Beverly, to tell her Paul had a rough night. She supported Paul’s request not to allow life support. We prayed for wisdom for the decisions to be made.

Paul was sitting up in bed when I returned, panicked and in pain, “Where were you, Dad? I’m sorry. I tried to move and I pulled out my IV.”

Since the IV team was unable to restart Paul’s IV, Paul was transferred to the Intensive Care Unit. The doctor said things were not good. “Something grave is wrong in his abdomen.

We’d like to do exploratory surgery. It will mean a ventilator and, if we can get his blood pressure up, a dialysis machine. The kidneys have shut down. We don’t know what’s going on.” The doctor told me the chances of Paul’s surviving the surgery were 50-50 at best, and there was a possibility Paul would need a dialysis machine for the rest of his life.

At that moment I remembered the words Eric, Paul’s younger brother, had spoken to me only 30 minutes earlier. When Eric phoned, he said, “Dad, we don’t want machines to keep Paul alive. Paul’s body is not like most 20-year-olds; it’s much older than that.” This gave me an overwhelming sense that the right decisions were being made.

I explained Paul’s requests to the doctor and his refusal of life support. Since I respected those desires, I could not sign for the operation. I had peace I was telling the doctor the right thing.

I sensed tenderness in the doctor as he said he respected my position. He advised me that Paul probably had less than an hour to live. I left to go and stay with our son.

Paul was clearly glad to see me. “Dad, I would like to have an anointing service when my friends come.”

I thought, he has less than an hour to live; his friends have exams this morning, and they’ll never make it. “Paul,” I said, “let’s you and I have the service, and then when your friends come we’ll have another one.”

I held Paul in my arms, his frail, weakened body slowly shutting down. Paul said he was at peace with God. I thanked the Lord for Paul’s life and asked God to pour out his grace on Paul. I thanked the Lord for the great emotional and spiritual healing he had done in Paul’s life. Even though I did not understand why Paul had to experience so much pain, I thanked God for giving Paul the grace to endure it. Paul then prayed a short prayer of thanksgiving for the life and opportunities he had experienced. Then, since there was no oil available, I took my saliva and anointed Paul’s head.

Shortly the chaplain came, and we talked in the hall while the nurses attended to Paul. “The doctors have something they want me to ask you,” the chaplain said. “They do not understand you and your son. They are confused. Why no heroic efforts, no machines?”

“Christians are just passing through this life on their way to a better place,” I said.

“You don’t understand.” The chaplain tried to explain. “Daily, they deal with distraught families. Even when treating a 90-year-old patient on the verge of death, they are expected to do all they can to keep the person alive for a few more days or weeks. Many of these are Christian families, too. Your son is young, 20, in the prime of his life. Why, as a father, would you not do everything possible to keep him alive?”

I told him of Paul’s experience of peace and looking forward to heaven. I shared my understanding that we place too much value on our earthly lives, that Scripture tells us life is a prelude to heaven. I explained that Paul knew he was going to have a new, perfect body.
Why should I wish to hold him here? Instead I had released him to God’s care and keeping. I knew God could do a miracle and restore Paul’s body, but Paul had already received the ultimate healing of emotion and spirit. To me that was what mattered.

Shortly after this, friends from college walked into his room. I was surprised. Didn’t they have exams? How did they know to come? Then the dean of students walked over to Paul’s bed and said, “I am here to see you.”

Weakly Paul said, “I know, and it will probably be the last time.”

“Paul, would it be OK if we had an anointing service?” the dean said.

What I had thought could not happen did. Paul’s friends gathered around him for the anointing service he desired. The dean prayed and anointed Paul with oil as we quietly sang several hymns. All of us in that holy moment experienced God’s comfort and peace.

Paul’s blood pressure improved, and he sat in a chair. The nurse agreed to bend the rules for visitors, but only two people at a time. Paul was happy to be up. It hurt a great deal, but he stayed there for three or four hours. For the next eight hours a stream of Paul’s classmates, the soccer coach and fellow teammates came by. Two by two they came into his room, and he challenged each in their faith walk. They had come to grieve with Paul in this difficult time but went away blessed, privileged to be at his bedside as he encouraged them on their journey of life.

In the middle of the afternoon the surgeon who had diagnosed Paul’s illness as lupus just two weeks earlier stopped by. I asked if Paul’s kidneys could ever recover. He explained that they were too diseased to ever work again. Some of the agony over the decisions we had made earlier eased.

That evening, as I sat with Paul, he said, “Dad, I am so happy I’m going home.” His radiance was intense as he lay there in peace. As Paul slipped away, he left a testimony of a glorious homecoming with Jesus.

Paul was gone from this life, but my work was not over. I was committed to finding his birth father and sharing Paul’s story. My flight home, despite the pain of missing Paul, was a celebration of the freedom my son was experiencing in his heavenly home.

Steve Steiner is a member of Kidron (Ohio) Mennonite Church.

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  • Posted by celestegks at Monday, August 13, 2007 at 01:30 PM

    As a journalist who sometimes covers bioethics, especially faith perspectives on the end of life, I found your family's story to be a powerful testimony about trusting God as you made those decisions. Thank you for sharing it.