BY PHYLLIS BURSKE GEORGE

ABA, CAN YOU PLEASE HELP ME PUT my railroad track together?" Three-year-old Ava has a complicated layout in mind, but the reality taking shape under her fingers refuses to match the concept in her head. My son Johnathan obligingly drops to the floor and begins unscrambling the tangle of track. Watching the two absorbed in their work together, I am moved by the evident tenderness between them. It is a tenderness I remember between me and my own mother, who died when I was 4 years old--probably of primary schlerosing cholangitis, a medical condition in which the bile ducts are blocked and that invariably results in death from either liver failure or cancer of the liver. The only known cure is a liver transplant.

Johnathan is home tending Ava, not at work like most other men his age, because he suffers from the same hereditary condition. His wife, Shadya, has become the family breadwinner, and I have moved from Denver to Tennessee to help when Johnathan is too exhausted or sick to cook, clean, and care for Ava.

The Beginning
Johnathan was a brilliant young engineering student with a bright future when he was diagnosed with primary schlerosing cholangitis 10 years ago. That picture changed in a single day as a gastrointestinal specialist explained the situation: Johnathan could expect several years of relatively good health, followed at some point by a downhill spiral culminating in a liver transplan--or death.

As reality hit, the family gathered with the church elders for an anointing service. Placing his hands on Johnathan, the pastor explained that God has promised to heal, but that He alone selects the time and type of healing: it might take place now or later, and it might be physical or spiritual healing. But for me, the choice was clear: physical healing--now--for which I pleaded during that service and in the weeks, months, and years that followed.

A child's pain is his parent's pain. Johnathan seldom complained, but it hurt me to know how he struggled through workdays at his engineering job, battling exhaustion, nausea, and pain. As his condition slowly deteriorated, I often wished that I might take his place and assume his burden. And when, eight years after the original diagnosis, pressure on the vascular system caused varices in his esophagus to rupture causing massive hemorrhaging, I felt that I was staring death in the face. I stormed heaven's gate, demanding healing for my son, even as I began laying plans to move to Tennessee to help Johnathan and his wife with their workload.

As his bright, creative mind began to fog from hepatic encephalopathy, Johnathan knew it was time to quit work, and he and Shadya traded roles. Today, Johnathan's siblings are making their mark on the world: his sister, Jenny, is a physician's assistant; one brother, David, teaches cinematography at Southern Adventist University; and his other brother, Toby, just graduated with a B.S. in Nursing. His academy and college friends, too, busily develop their various careers while Johnathan washes dishes and reads stories to Ava.

Last summer I finally moved to Tennessee and settled next door to Johnathan, Shadya, and Ava, hopeful that a transplant would soon take place, nervous about my own ability to help, and torn by my son's evident deterioration. Often he could not sleep at night, and when he did he would awake to find his fingers locked in a clawlike grip. But his doctors believed that a liver would be allocated to him soon, and urged him to put on as much weight as possible so that when the call came, his body would be ready.

Since then three important changes have occurred. First, hope for a donor liver, once bright, has receded into the future, as allocation protocols have changed and donor livers seem to be scarcer than ever. Second, a baby brother or sister for Ava is due to arrive this fall. We are all thrilled and a bit nervous about the challenge as well as the blessing it represents. And third, I have seen my prayers for Johnathan's healing answered.

A Different Kind of Answered Prayer
I began to see God's answer as I observed a deep calm in Johnathan I had never noticed before. Far from the rancor one might expect about his derailed career and uncertain future, it was obvious that Johnathan found a serene happiness in combing little Ava's hair and reading her stories, in pruning trees and baking bread, in spending time with Shadya, and in having the simple freedom to work or rest as his strength allowed. Beyond that, I sensed a quiet peace, a profound acceptance of God's will, whether that should turn out to be sickness or health, life or death.

Others have seen the change as well. Recently one of Johnathan's liver specialists confided, "I have to tell you that your son is a remarkable human being--one of the most extraordinary people I've known. He has a quiet inner strength I seldom see in a patient." Church members have told me of the courage they have gathered by being around Johnathan, observing his acceptance of his situation and his confidence in God. And at a recent weekend retreat several of Johnathan's buddies commented one by one, "Johnathan, you are the happiest and most peaceful I've ever known you to be."

"We all see your inner peace," I told Johnathan afterward. "Where did it come from? How have you learned to be so accepting of things as they are?"

"The obvious correct answer is that it came from God," he grinned. "But beyond that, I've learned so much from my group." (Johnathan helps to moderate an online support group of PSC patients and their interested family members.) "By watching the way Christians and their families faced death, I've come to realize that death isn't the worst thing that can happen to you. The worst thing that can happen to you is to live without God." He paused, then added, "I can't imagine facing my situation today without Christ."

God has answered our prayers for Johnathan in His own time and way, and I marvel at what He has done. I know my son is going to live forever. But I want him to continue living now as well. I watch Ava, devoted to her Baba and content just to be in his company, and I remember my own loss at the age of 4. My mother's death left a void in my life that words cannot explain. That is not what I want for Ava and her soon-to-be brother or sister, and I do not believe that God wants it either.

We Can Help in the Healing
This is where you and I come in. Barring an out-and-out miracle, my mother never had a chance at survival; organ transplants were unknown in her time. But Johnathan and thousands of others like him can survive--if only enough of us sign our donor cards and tell our families about our wishes. Presently, more than 83,000 Americans are waiting for donor organs, and last year 5,968 Americans died because they did not receive an organ in time.

Recently one of my college students wrote a paper in which she told of her husband's fatal auto accident and her subsequent decision to donate his entire body for organ and tissue transplant. Later, doctors told her that her gift had touched the lives of more than 400 people, including recipients and their family members. "That knowledge," she wrote, "is the one thing that has made my loneliness bearable."

Today I rejoice in the spiritual healing God has given my son, and in the realization I have that he is going to live forever. I continue to pray for his physical healing as well. And I have signed my donor card and placed it in my wallet, made sure that my driver's license indicates my desire to be an organ and tissue donor, and told my family about my wishes. This is something all of us can do. I'd like to urge my readers to make the same decision and to communicate it, as I have, as soon as possible.

Jesus' death has given us eternal life. And as His follower, the possibility that my death might provide another human being with an extension of this earthly life is to me cause for great rejoicing.

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Phyllis Burske George writes from Clinton, Tennessee, and works as a reading specialist for Knox County schools.