Friday, July 10, 2009

My Sister, Stephanie

I'm posting edited versions of various talks I've given for the Emmaus community. I think it's important to know where I've come from, to realize where I'm going.

In 1963, Tom and Betty Wetterman, a 21 and 19 year old, were a young married couple and were about to become first time parents. What for most people should be the greatest day of joy in their lives became a nightmare. But even in the worst of days, the Holy Spirit was with them.

Their newborn baby, Stephanie Denise Wetterman, had serious problems. She was born with Spinomeningoencephalocyll. That means her skull did not close properly as she was forming in the womb. Part of her brain had slipped out of her skull into a bag of flesh that had formed on the back of her head.

No child ever born with this particular birth defect, of this severity, had ever lived. The young mother was told by the Doctor, “Forget this baby. It is going to die. You are young. You can have more babies.” Stephanie was given two weeks to live, though the doctors believed it probably wouldn’t be that long.

The family prayed for help to come, but the neurosurgeon in charge waited for several weeks, expecting the child would die. She did not.

Eventually another neurosurgeon became involved. He offered to attempt a radical surgery to replace Stephanie’s brain into her skull, take off the excess skin sack, and to cover the hole in her skull with a wire mesh. The brain’s swelling could be controlled with a shunt that would funnel excess brain fluid into her stomach to be reabsorbed into her body. The prognoses for her surviving the surgery was very low, but there was hope, and the family: the parents, grandparents, and their brothers and sisters in blood and in Christ, prayed. She survived the surgery.

Tom had worked as a mechanic at the time, and Betty had been a legal secretary, but quit her job to stay with the baby at the hospital. Tom took a second job and worked long hours, but it was impossible for the young couple to pay the mounting bills. The family prayed.

A hospital administrator called Betty into her office one day and told her that if she didn’t have anymore insurance, or the money to pay the bills, she would be asked to leave the hospital. The young mother, distraught and overcome with the burdens she faced and the prospect of her baby being kicked out of the hospital and dying due to lack of medical care, was sobbing as the neurosurgeon entered the room to check on Stephanie. He asked her what was wrong. She told him what had happened. He told her not to worry about it anymore, that there was no way the hospital would kick them out, and that he would take care of it.

The administrator never again spoke to Betty, and they were never charged for the surgery or the hospital stay.

The baby suffered through 13 surgeries the first 9 years of her life, 10 of them before she was a year and a half old. The first saved her life, and she was the first such child to live with that birth defect. Unfortunately, the brain had to be separated from the skin it had become attached to, and the scraping of the brain left her profoundly retarded and subject to grand moll seizures, one of which left her paralyzed on half of her body.

Many will hear her story and say for what purpose did this child live? What possible effect could a profoundly retarded child have on our world?

My sister Stephanie had many problems. To control the frequency and severity of seizures she has to take some very hard drugs including Phenobarbitol. She can do little for herself now, but I remember when we were both young, and how she would try to walk in her physical therapy class, how she would laugh at her little brother’s antics, how she would radiate God’s glory as she belted out songs such as “Jesus Loves me this I know” and other children’s songs. She loved her papaw, and he loved her. He had lived a very hard life, but three heart attacks and his love for his grandchildren, especially Stephanie, greatly affected him, and he died a good, Christian man.

I remember our parents in the choir of our church, while Stephanie and I would sit in the pews listening and watching. She would move her hand to the time of the music and smile the greatest smile. She touched many lives including the pastor of our church, many ladies who have had to care and look after her as she got older, extended family members, and many others.

However, the greatest impact she had was on me. From her I learned empathy for others. I learned to see the pure love of the Lord reflected in her. I remember being called a “retard” because she was my sister, but I always loved her and as a child dealt with such teasing the best way a young boy could.

Eventually, as an adult, I became a special education teacher, knowing that I could make a difference in the lives of not only my students, but their families as well. It means so much to have a teacher that has seen such handicaps in their own lives. I know, especially since one of my own sons is autistic, and I have to attend school meetings as the parent, not just the professional.

Stephanie’s presence in my life, and God’s Grace made me who I am today. Despite these lessons, there was a time I tried to do things my way, and not God’s way. I knew him, but had no real relationship with him except during holiday prayers before meals and the football games. Eventually, my wife got me to begin attending our church, but I kept a distance. I knew I needed more, but I wasn’t sure how to go about it.

My sister, Stephanie, will turn 46 in a couple ofmonths. Hundreds of people have come into her life and are amazed by her life’s story and the pure love she and others like her radiate. I have had her caretakers tell me about how she continues to astonish them and how her simple smile can help them through a difficult day.

Stephanie has been one of the greatest influences on my life. Would I be the person I am today without her? Because of her I became a Special Education teacher, and now work with at-risk kids, most of whom come from broken homes, have broken lives, and little hope They need to know there are people who truly care about them. They need to know God’s love.

Every child I touch and make a difference with is a blessing made possible by God’s grace and my sister’s presence in my life.

God touched me through her. If God can use someone like her, imagine what he can do with you.

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