DNR
      Three year old Christopher was bitten by a tick and had contracted Rocky Mountain Spotted Fever. He was off of the respirator, the heart monitor, the IV meds for kidney failure and seizures. Yet he remained in a coma. Bill and I met with one of the doctors. I asked him how we should know if we should stop intervening. How would we know if or when Christopher should be declared DNR, Do Not Resuscitate?“The question that you have to ask yourself is, are your interactions with Christopher satisfactory?” he responded.
       Are my interactions with my child satisfactory? I could think of quite a few people that I didn’t have satisfactory interactions with. Did this mean that they should be declared DNR? He wasn’t asking the right question. I thought the right question had to be more along the lines of a God question. Like maybe, what was God’s purpose for Christopher? What would the quality of his life be? What was quality?
      While I was thinking, Bill and the doctor sat in an increasingly uncomfortable silence. “I don’t make existential decisions.” Bill’s words broke the stillness. “This is beyond me.”
       “It’s an extraordinarily difficult decision to make,” the doctor offered.
       “Making no decision can be making a decision,” I said.
       “Christopher could just continue to be swept along in all this technology.” “Sometimes we’re extending death, and not life,” the doctor admitted. Christopher could not decide.
We had to decide for him. Would we want to live like this?
We had no way of knowing how much of Christopher was left in his body. How much would come back? What were his chances of a functional recovery?
      If there were percentages, what would we do with
them? What if they said, you can have fifty percent of
your child back? What would that mean? I was not Solomon. All I knew was that our child seemed to be in limbo. Not here and not there. My strongest sense was that God was calling him home.
      Over the next few days, Bill and I tried to talk. We debated back and forth all the possible scenarios. Would declaring our son DNR somehow make the decision to actively let him die easier? We might have to just wait and see how much he recovered. Would Christopher become a medical experiment or curiosity? Would one of his brothers need bone marrow or an organ transplant some day? We would not keep Christopher alive for parts.
We didn’t know what God’s plan for Christopher was.
Our bottom line became that while we would still hope for recovery, we resigned ourselves to no heroic measures.We asked to have Christopher declared DNR, Do Not
Resuscitate.
      I went into PICU for the next visiting hour. I signed in by his name. The initials DNR were under the status column. The nurse would not look at me. I went to Christopher’s bedside. He remained motionless. I traced the sign of the cross on his forehead with my thumb. “May God bless and keep you.”
      I pressed my lips through the invisible cross onto his feverish flesh. “Christopher, we think that you might be stuck in between life and death. You have so many booboos. If it hurts too much to stay, you can go. We want you to know it is okay to be the first to go to heaven. It’s okay to come home to mommie and daddy, or go home to Jesus. We love you no matter where you are.”

Line of Demarcation
      A ball point pen ink line was drawn across Christopher’s hand, tracing a path between life and death. It was the line between viable tissue and dead tissue. His fingers, once blue and plump, were now dry, shriveled, and black. My mommie eyes caressed the shrunken indentations between his fingernails and first knuckles. I was afraid to touch them because they looked brittle, like if you flicked them they would snap off. The pen line on his feet had moved from his toes to the middle of his feet. He smelled of decay, sort of like a creosote railroad tie.
      The zone of demarcation crept in gradations from black to blue. The staff believed that the line would sharpen, making it clear where to amputate. Instead the gangrene marched over the line, one soldier cell at a time losing the war. Another battle line was drawn. Life on one side, death on the other.
      Christopher started to run a fever again. The doctors began to think that the dead parts were causing infection. They decided to push for surgery. We had decided on no intervention. They pushed. We had been counseled that we could refuse antibiotics, blood, feeding tubes, and heroic measures.One of the doctors cornered Bill in the elevator.
“You can’t just let him rot to death,” he told my husband.
      If that was his sentiment, he could stop the rotting, but we were not going to prolong Christopher’s life. It was like saying that you couldn’t let someone with stomach cancer starve to death. We told the staff that if the surgeon felt he must amputate, we wanted no antibiotics after surgery.
We met with the surgeon.“We will start slicing at the toes and work our way up until we find viable tissue,” he explained. Viable tissue, I thought, is juicy and hurts. They’ll slice back until they hit blood, because where there is blood, there is life.
       “Is he still DNR?” he asked.
       “Yes.”
       “I see here you’ve asked for no antibiotics. I can’t do something as simple as not give antibiotics. It’s not a heroic measure, so I can’t not give them.”We wanted the intervention stopped.
       “Why even do the surgery?” I asked, thinking where there’s blood there’s life, where there’s life there’s pain. Christopher didn’t need any more pain.
       “We think that if we don’t amputate, the fever will never go away.” He countered with a question of his own. “Why would you not want me to do the surgery?” The doctors sometimes had a way of pushing, acting as if you would be in court if you didn’t do what they wanted.
       “Because our son is going to die anyway. He is showing no promise of functional recovery.” I tried to use doctor-type words to erase the you’re-stupid look from his face.
       “We have to do the surgery,” he stonewalled. I suddenly understood that the surgeon was emotionally involved in Christopher’s care, maybe not in the same way Bill and I were, but he did care about our child. He hadn’t traveled down our long road toward not intervening. He had come in fresh, thinking, I can fix this.
       We agreed to his terms.

Worse Than Death
        “There are things worse than death.” Another doctor paused. “I want you to know that I will deny this conversation to anyone and forever.”
         We sat once more in the hospital conference room outside PICU. The doctor looked at us. Bill and I looked at each other and then back to him.
         “The amputations and the brain damage,” he grimaced, “that level of disfiguration for life. While I am doing this test tonight, while the hospital is quiet, I have the opportunity to let him go. But only if you both agree.” Bill and I looked at each other. Disfiguration? I thought. I didn’t care what Christopher looked like. I did care that he lacked any function for enjoying or appreciating life.
       “We all have to be in agreement,” the doctor continued. “I cannot have another doctor come in and accuse me, You killed him! At this point, medical intervention is not prolonging your son’s life; it is prolonging his death. I will leave you and come back after rounds. You must both agree.”The door to the conference room closed behind him. My eyes returned to Bill’s.
         “What are you thinking?” I asked.
         “What are you thinking?” he countered.
         “I think that God is calling Christopher home and this man is his chariot.”
          “I see no reason to do this now. We have plenty of time.” I took a deliberate breath.
          “We should do this now because God has sent this man of mercy and Christopher will be able to slip quietly away. He doesn’t even know us “I can’t say yes in this way,” Bill argued.
            “In what way?”
            “Pushing him over.”
            “Pushing him over? So, you think that he is going to get well?”
            “No.”
            “How much more does he need to suffer?” I asked.             “This is letting him go without further suffering.”
            “There will be opportunities.”
            “This is an opportunity!” I whispered in a hiss.             “Enough already. I will not watch him gasp for breath with pneumonia!”
            “Some suffering will have to be involved.”
            “Some suffering has been involved.” My voice rose.             “More than enough suffering has been involved. For the love of God, let him go.”
            “I cannot let him go out of fear of God.” Bill’s foot was twitching.
            “You cannot let him go out of fear of God?” I asked.
            “Yes, fear of God.”
            “The only thing worse than death that I can see right now is your fear of God. You are willing to let Christopher die through neglect, but not mercy.”
            “I know that letting him go would be best for him, but,” Bill paused, “I cannot because of fear of God.”
            “And I can because of love of God.” A light tap sounded on the door. The doctor entered. He looked at us.
            “We cannot agree,” I said.
            “You can have more time to think about it,” he offered. “I will put the test off until tomorrow morning.” I went to Christopher’s bedside. I took a photograph. I wondered if it would be his last. He was so peaceful. He looked like a rag doll that someone had been playing doctor with, all of his limbs bandaged and well swaddled in hospital blankets. No amount of mommie kisses would help this. I couldn’t hug him back to me. I couldn’t send him on because his parents could not agree. God, I begged, please take him home. Take this decision away from us.
            By the next morning, another doctor had become involved in the procedure. The opportunity was gone.

In a Garden of Children
        At five years old, Christopher could babble but not use words. He had three fingers and a thumb nub on his right hand, with just enough grasp and intelligence to feel around a high chair tray for solid food. All that was left of his left hand was his palm. With both feet amputated and too much mental impairment to use prosthesis, he crawled and due to seizures and cortical blindness felt his way around for local mobility.
       He attended the special needs class at the local kindergarten. Instead of a permission slip for field trips, he now took a DNR letter along with his diapers, bottles, and snacks. Instead of a relative to contact in case of emergency, he carried the name of a hospice nurse to contact in case of death. I continued to worry that Christopher would seize in school, and they would call an ambulance and he would get stuck in yet another level of limbo. I talked his teachers through how not to intervene. They wanted to know what to do exactly if he died on their watch. I told the teachers that wherever he died, I planned to hold him and sing to him until my sisters from hospice arrived. They wanted to know exactly what they should sing to him. We had talked to the children about his death and how it would be a birthday for him, a birthday in heaven. We had planned to sing Happy Birthday in heaven.
      Hospice had reassured the staff at the special needs kindergarten class that it was okay to have a child in their room who was going to die, perhaps soon, perhaps at school. She helped them understand that it was all right not to intervene with a child as medically fragile as Christopher.
I felt comfortable that they would love Christopher until his last day. I wanted him to die at home, but the arms of anyone who loved him was home.