Muscadine Lines: A Southern Journal

Jonathon

Judith Anderson


Jonathon died last night.

He was one of the most beautiful babies I ever saw, with blond curls and eyes the color of a cloudless spring sky. His skin was pink and clear. His tiny fingers curled into relaxed commas, as only baby fingers can curl. His little shell ears were soft as flower petals. To look at him was to think you had found the perfect baby.

Jonathon was born with only a brain stem. According to the experts, his brain stem would allow him to feel hunger, to cry when hungry or in pain, to suckle, and to digest his food. They predicted a life span of days or weeks. The only hope they could hold out was that new legislation would pass in the next few days that would allow them to use children like Jonathon as parts farms. They would harvest his organs and distribute them to recipients more worthy of life if the natural parents would relinquish their parental rights to the hospital. His distraught parents agreed and left to mourn their child.

The legislation did not pass.

The experts considered Jonathon was no more than detritus. They decided to withhold food from this tiny mite who could experience nothing but hunger pains. This they called a mercy killing.

His adoptive parents had five children. They had always believed that their perfect family would have six children. His adoptive father was a doctor, his mom had been a nurse. They knew the prognosis and the burden of the responsibility for a child like Jonathon. They also knew he was their sixth child.

The first time I met Jonathon, his mother brought him to our office. She had three of the other children with her. The children were delighted with their tiniest sibling, and squabbled good naturedly about who got to kiss and cuddle him next.

Jonathon was beautiful. He had thrived in his home and grown as babies are supposed to grow. His clear sky blue eyes saw nothing. His tiny shell ears heard nothing. That did not matter. He was loved and he wanted to live. I asked his mother what his prognosis was now.

“Please don’t say anything in front of the children,” she said. “We want them to be able to love him without anticipating sorrow. But the doctors still think months at the most.”

The experts warned his parents that Jonathon would never be able to respond to them in any way. Yet at that first meeting I witnessed a miracle that was repeated again and again throughout Jonathon’s life.

As with all normal children, sooner or later someone had to go to the bathroom. Jonathon’s mother handed Jonathon to her oldest son and told him to stay in the chair, and took the two younger children away. Immediately, Jonathon’s whole body stiffened. His brother never moved, but held him gently and securely. When his mother came back, she took Jonathon from his brother’s arms. To my astonishment, Jonathon relaxed immediately and completely.

“He knows you!” I said.

“Yes, I know,” his mother responded. “I think his spirit recognizes my spirit.”

I think Jonathon and his mother listened to the angels sing.

Over the months that followed, Jonathon learned to recognize the rest of his family and later recognized friends and caretakers and responded to them, too.

The next time I saw Jonathon, he smiled.

The experts said what all experts tell all mothers: “It’s gas.” But gas doesn’t explain why Jonathon smiled when friends came into his room, but not if strangers came. Nor does it explain the pure joy his smile brought to everyone who became his friend.

“The doctors must be ecstatic to see how well he is doing,” I said.

“No,” his mother said. “They are embarrassed by him.”

Unless he was sick, Jonathon went to church with his family. Each time they entered the sanctuary Jonathon relaxed. He loved the organ. He could not hear, but he could tell when the big pipe organ was playing and he smiled. Perhaps he felt the vibrations of the organ, and of his mother singing. He was welcomed by his church family and loved.

I think Jonathon listened to the angels sing.

As Jonathon grew older he reached the age where, in “normal” children, the brain begins to take over some of the functions of the brain stem. Jonathon’s brain stem sent out electrical charges, searching for a place in the brain that would respond, and found nothing. Jonathon began to have seizures. He had to have medications to control the seizures. The experts predicted his imminent death. But Jonathon was not ready to die. He fought to live.

Jonathon grew physically. His mother had long since stopped carrying him. He had a specially made wheel chair in which he continued to come to church or go on trips. His siblings helped care for him, still squabbling over who got to help Jonathon or just sit with him. Jonathon even went to school, a special school for the disabled where he had physical therapy daily. He still had seizures. He still smiled at those he knew. He still impressed all who met him with the joy he somehow managed to communicate. He still listened as the angels sang.

Eventually time caught up with Jonathon and the experts were right in their prognosis. As a child approaches puberty, even more functions are passed from brain stem to brain.

Jonathon was out of time. He began to have infections he could no longer fight. His breathing became erratic. He caught pneumonia. Jonathon hung on to life, but grew weaker and weaker every day. His family knew he was dying. Their one wish was that he not suffer unnecessarily. They called in hospice. Each nurse who came was affected by Jonathon’s love of life and sheer joy in living. By their second or third trips to see him, they eagerly awaited Jonathon’s transforming smile. The chaplain told Jonathon’s parents that a friendly rivalry developed among the staff: who got to see the most “Jonathon smiles.”

When Jonathon died he lacked one month of being twelve years old. The spring sky was as clear and beautiful as Jonathon’s eyes.

His older brother, a Marine who fought in Iraq and recently reenlisted, wore his dress uniform to honor this small wisp of humanity who fought gallantly for every moment of his life. Jonathon’s family is a family of heroes. They committed to loving a child in need with no hope of receiving anything in return.

Jonathon never learned to walk. He never rode a bicycle or touched a puppy’s ear. He never begged for a Nintendo or complained about his dinner. The experts say his life was a waste. His family and friends say his life was a testimony to the value of every human, to his intense desire to live, and to a life devoted to reaching his full potential. His was a life filled with joy.

His funeral was crowded with family and friends who came to grieve a loss almost too great to describe. The church was packed. Grown men would start to talk about Jonathon, and tears filled their eyes. In the midst of assessing what each person there had lost, there was a feeling of inexpressible joy, as though Jonathon was smiling at us. He was a gift given to everyone there.

And Jonathon? I think Jonathon is sitting with his Father, and smiling. He has reached his full potential at last. And he is listening to the angels sing.

***

Judith Anderson lives on 20 acres at the end of a dead end road in St. Clair County. She recently obtained her first Confederate Rose plant and points with pride when it blooms, but as much as she loves flowers, she is more famous as a "seed undertaker" than gardener. She is more successful as a grandmother and wife and mother, and to fill out her life, she works with her husband in a nonprofit organization.

© Judith Anderson

Muscadine Lines: A Southern Journal ISSN 1554-8449, Copyright © 2004-2012