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Son with spina bifida ‘brings joy … in being who he is,’ mom says

NASHVILLE, Tenn. (BP)–Although she and her husband decided against fetal surgery, Karen Moore still rejoices over their decision to give birth despite spina bifida that keeps her son in a wheelchair.

Joseph Bruner, the physician who operated on “Baby Samuel” — a Nashville, Tenn., child photographed in the womb in 1999 — offered the Moores a similar procedure in 1995. But after consulting a neurologist, Karen and her husband, Gary, decided at the time the procedure was too risky.

However, they celebrated their son Quinten’s fifth birthday last November with gratitude for his outgoing personality and his ability to look at himself as just like any other child.

“I just don’t think a person can put it into words,” said Moore, a member of New Life Community Church, a Southern Baptist congregation in Lebanon, Tenn. “He brings joy just like our daughter does, just in being who he is — his personality and reaction to people.

“He’s real talkative; there’s not a stranger in this world to him. If he saw you in the park, looking at a bird or squirrel, he would ask what you are doing or talk to you.”

Enrolled in an early intervention preschool program, Quinten has some physical obstacles. Paralyzed from the waist down, he needed surgery last spring to correct a problem with his bladder.

The year before, Quinten started saying he wanted to walk and pleaded with his parents to let him stand up and play ball.

His mother decided to be truthful and explain that right now he couldn’t. They are certain he will in heaven and that’s the only promise they can make, she told him.

They compensate for his shortcomings with weekly swimming therapy sessions at an Easter Seals center for people with disabilities or physical problems. Once a month he participates in a wheelchair sports program in the Nashville area.

He also has taken up modeling, appearing last year on the cover of HomeLife, a Southern Baptist magazine, for a story on adopting special-needs children. He also has posed for photos in two upcoming publications from a Methodist publishing house and filmed a television commercial for Easter Seals.

While some would think it tragic that a young boy can’t walk, Moore said that view stems from a different image of reality than what God sees.

“True perfection is on the inside, not the outside,” she reflected. “Many people have imperfections, but we run the world by our heart and soul. Only God can see how we are on the inside.

“With Quinten, we want him to have a good mind and make his place in the world. I think what someone does in their own heart and soul makes a difference.”

Meanwhile, Paul Campbell, whose son also has spina bifida, said he has shown incredible perseverance the past 17 years.

“John Mark has to get up every day and keep going,” said Campbell, a former pastor in south Alabama who retired last summer because of his own disability. “From the time we were sending him to school, he rolled out and went with a smile on his face, even though nobody wanted him there.

“Then there’s the reality of life. That’s the joy. He sees things as they are. When someone is mean to him, I get angry. He says, ‘That’s the way they are; they have to deal with that.’ Handicapped people just want a chance. If we give ’em a chance, they’ll do something. My boy’s not a quitter.”

Life hasn’t always been easy, Campbell said. John Mark has no bowel control and must drain his bladder manually five times a day. In the past, his father said he was attacked several times at school, with one incident resulting in the loss of hearing in one ear.

Because of such problems, the Campbells decided to homeschool their son. He is in the midst of his senior year and will graduate this spring. Afterwards, he plans to attend vocational training.

In addition to the inspiration they derive from their son’s positive attitude, Campbell said their circumstances have strengthened his faith. Although he has never earned more than $25,000 a year and lost his health insurance in 1993, he doesn’t owe anything to doctors, he said.

“When our son was born, I owed $40,000 [because of special surgery] and had to pay 20 percent of it,” Campbell said. “Before the week was out, the Lord provided it. He’s never let me down. We’re blessed. God sees us through it. We’ve never been without.”

Faith will be the determining factor in facing a crisis with an unborn child, Moore emphasized. She encouraged prospective mothers in this kind of situation to also:

— Talk with other parents who have been through similar experiences.

— Find as much research material as possible. Much of it is available over the Internet, she noted.

But ultimately their fate depends on the Lord, Moore said.

“We have to realize we’re only able to do so much and have to turn it over to God,” she said. “God allows things to happen, knowing the future.”
(BP) photo posted in the BP Photo Library at www.bpnews.net. Photo title: QUINTEN MOORE.

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  • Ken Walker