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Blind Faith

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"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.

Luke and Rachel settle into a pallet of quilts under some shade trees in back of the main house. As three goofy-eyed dogs lick their faces, one of their cousins -- 11-year-old Anna McFarland, a cute, skinny kid with shoulder-length blond hair -- sits in a wooden chair at the foot of the pallet with an open book in her lap. When a visitor asks her what she is reading to her cousins, Anna gets up and pulls the stranger aside, out of earshot of Luke and Rachel.

"I'm not reading anything," she says with a smile. "I'm just making it up."

As Anna goes back to entertaining her cousins, their grandmother takes a seat at one of the glass-top tables next to the swimming pool. Ann Watson is still a striking woman. She is also a woman who doesn't hesitate to speak her mind. Over iced tea she laments that she and her husband can't step in and make Luke and Rachel's problems disappear. "As a grandmother, you feel like you ought to be able to fix it all," she says. She also feels inadequate when trying to answer Luke and Rachel's questions. For example, she says, Rachel recently asked, "Why does God want me to be blind?"

Like her daughter-in-law, Ann believes that "God knows what he's doing. I would just like an explanation. And I truly believe that one day I will understand, and I'll say, 'Oh, that's why.' "

But unlike Melinda, Ann Watson believes that Luke and Rachel deserve an explanation -- not just about why they are going blind, but full disclosure about their medical condition. As a former nurse, Ann believes the truth is always in the best interest of the patient. She suspects that Luke and Rachel may be able to handle the truth better than their parents think. "But I have to respect Melinda's wishes," she says.

Ann's comments are the only indication of tension within the family over Luke and Rachel's condition. It is an undercurrent of tension that Sam confirms. "That's something we're struggling with," he admits. "I don't even know how to deal with thinking about it. They know there's something going on. But at least right now, I don't think we'll tell them, unless they ask."

Sam acknowledges that the situation has been devastating not just to him and Melinda but to their entire family as well. "I know that all my family members love Luke and Rachel dearly," says Sam. "And it's been so hard watching them go through it, too. Everybody's suffering through this thing. It's just one more thing to deal with. Not that it's a burden. We're blessed that they do love them so much. It's just a part I hadn't thought about before. Everybody else is suffering along with us, and they suffer in their own ways."

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