died last night.
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
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.
legislation did not pass.
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.
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.
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.
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
dont 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.
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 Jonathons
with all normal children, sooner or later someone had to go to
the bathroom. Jonathons mother handed Jonathon to her oldest
son and told him to stay in the chair, and took the two younger
children away. Immediately, Jonathons whole body stiffened.
His brother never moved, but held him gently and securely. When
his mother came back, she took Jonathon from his brothers
arms. To my astonishment, Jonathon relaxed immediately and completely.
knows you! I said.
I know, his mother responded. I think his spirit recognizes
think Jonathon and his mother listened to the angels sing.
the months that followed, Jonathon learned to recognize the rest
of his family and later recognized friends and caretakers and
responded to them, too.
next time I saw Jonathon, he smiled.
experts said what all experts tell all mothers: Its
gas. But gas doesnt 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
doctors must be ecstatic to see how well he is doing, I
his mother said. They are embarrassed by him.
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
think Jonathon listened to the angels sing.
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. Jonathons 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
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.
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.
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 Jonathons
love of life and sheer joy in living. By their second or third
trips to see him, they eagerly awaited Jonathons transforming
smile. The chaplain told Jonathons parents that a friendly
rivalry developed among the staff: who got to see the most Jonathon
Jonathon died he lacked one month of being twelve years old. The
spring sky was as clear and beautiful as Jonathons eyes.
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. Jonathons
family is a family of heroes. They committed to loving a child
in need with no hope of receiving anything in return.
never learned to walk. He never rode a bicycle or touched a puppys
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.
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.
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.
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.