Blind Faith

Luke and Rachel Watson have lost most of their sight. They eventually will lose all motor skills. Their parents are losing sleep -- do the adults tell their kids they're dying of Batten disease?

The siblings are both enrolled at Lowery Elementary in the Cy-Fair district. This past year Luke was pulled from all language arts classes. He now practices Braille; he even recently put on a Braille demonstration for the other students in his class. The rest of the time, Rachel and Luke attend regular classes with their own full-time aide, provided by the school district, to assist them. Melinda admits the district has a good program for visually impaired children, but she says her kids feel isolated. When she asks them who they had lunch with, they have no idea. And she concedes that social situations are becoming more difficult, especially for Rachel. While Luke now uses a cane, Rachel refuses.

"There's a point coming where she's going to have to quit relying on her eyes to get around," says Melinda. "She's going to have to start using a cane next year in school. And she's so humiliated about the thought of doing that. She just can't stand it. She says she doesn't need it."

Perhaps to prove her point, a few weeks ago, after being dropped off at home by friends following Sunday-evening church services, Rachel told her mother that she would race her to the garage. "And dumb me," says Melinda, "I said okay. And Rachel took off running and ran smack into the back of my van [Melinda slaps her hands together for effect] with her face. It flipped her backwards, and I caught her. She just never even saw it. She's also run into a tree. She's at a very difficult time right now. She's not as coordinated as Luke."

…while Rachel still resists the idea of walking with a cane.
Deron Neblett
…while Rachel still resists the idea of walking with a cane.
Like their rest of their family, cousin Anna McFarland shares the Watsons' pain and love for Rachel and Luke.
Deron Neblett
Like their rest of their family, cousin Anna McFarland shares the Watsons' pain and love for Rachel and Luke.

Luke displays a similar desire to maintain a normal life. Despite his lack of vision, he relentlessly pesters his parents about playing baseball this summer -- organized baseball. He did play T-ball last summer. After hitting the ball, Luke would run toward the voice of his father, who would be waiting at first base.

"The hardest thing…," says Sam, his voice trailing off momentarily. "Luke came up to me the other day -- of course we love to play baseball and play together all the time -- and said, 'Daddy, I've decided when I grow up I want to be a professional baseball player.' It just totally breaks your heart."

It's during those moments that Sam tends to agree with Melinda -- that, at least for now, it's best that their children not know the whole truth. What good, the parents wonder, would come from spoiling such sweet dreams with the horror of reality? Medical ethics experts tend to agree.

"I doubt that one answer fits all," says Dr. Raymond Lawrence, chaplain of Columbia Presbyterian Hospital in New York City. While Lawrence places a high value on full disclosure in medical situations, he emphasizes that each child should be evaluated on his or her ability to deal with devastating information. However, he says, keeping important secrets from children can also backfire.

"There is always the possibility that a child will find out about his condition through another source," says Lawrence, a former Houstonian who worked at the Texas Medical Center. "That's what you call a political risk. There is always the risk of a ghost in the room, and then secrets get disclosed when it is least advantageous to the person."

Despite those risks, Lewis, who first diagnosed Luke and Rachel, believes the Watsons have made the right decision. "I totally support the parents' decision for these children," the doctor says. "There is no other reasonable or ethical decision."

That position is also endorsed by BDSRA president Johnston, who says he did not tell his own daughter that she was dying. "My daughter did not want to know," he says. "She knew that things were going bad, but she didn't want to know what was going on. So we never told her. Eventually as their cognitive powers are affected, it becomes a moot question. They reach a point when they wouldn't understand if you told them anyway."

The medical community may side with Sam and Melinda, but not everyone in the Watson family does.

JW Farm is located down a dirt and gravel road south of U.S. Highway 290, just east of Chappell Hill in Washington County. In the spring, the area is one of the best bluebonnet viewing spots within driving distance of Houston. Sam Watson's parents, John and Ann Watson, bought the farm a few years after they retired. It is a former resort that was used by an oil company to entertain its employees and guests. There's a swimming pool and a tennis court, as well as plenty of space for the Watsons' 22 grandchildren to do what grandchildren do. The Watsons' home, where they live full-time, is a converted lodge situated among several trees atop a small hill about 100 yards off the road. It also serves as the semiregular Sunday lunch gathering spot for the Watsons and all their children and grandchildren.

On a recent Sunday afternoon, a sizable portion of the Watson clan converges on JW Farm for a Mexican buffet and raspberry cake. There are discussions of politics and literature, and Sam's older sisters tease their little brother as if they were all still kids themselves. The usually gregarious Melinda is somewhat withdrawn -- that is, until a bittersweet moment after lunch when she holds a sister-in-law's new baby in her arms, and gently rocks and coos to it.

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