By Camilo Smith
By Craig Malisow
By Jeff Balke
By Angelica Leicht
By Jeff Balke
By Sean Pendergast
By Sean Pendergast
By Jeff Balke
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 willunderstand, 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."
At the same time, Sam and Melinda have been amazed by the kindness of strangers. It's as if people who don't know the Watsons were better equipped -- perhaps better insulated -- to share the family's pain. For example, the Watsons are members of Foundry United Methodist Church, where Astros manager Larry Dierker and his wife, Judy, also worship. According to Sam, when the Dierkers learned of Luke and Rachel's illness, they didn't hesitate to help.
This past spring the Watsons went to Disney World, a trip arranged for Rachel through the Make A Wish Foundation; the year before, the organization had provided the same trip for Luke. Before leaving for Florida, the Watsons inquired through their church if Luke could meet a player at the Astros' spring training camp in Kissimmee. Instead, Dierker arranged for tickets to a game, a tour of the clubhouse, and introductions to several members of the team.
"Burt Hooten's wife came and met us at the gate, took us in the complex," says Sam. "[Dierker] came out and talked to us before and after the game. Moises Alou stopped on his way out of the dugout and shook Luke's hand. Signed a cap for him. Tony Eusebio did the same thing. So did Luke's hero Jose Lima. Luke can't see them, but he's in awe of them.
"I've just been floored by so many people going the extra mile to help out. They care so much about our situation. It's definitely been eye-opening."
In the days and years to come, the Watsons will need those new friends, as well as their family, more than ever. As their children's health continues to decline, the Watsons' financial and emotional pain will only increase. Although most of their medical expenses are covered by the insurance plan Sam has through the Corps of Engineers, that soon will change, say BDSRA officials. Children with Batten disease often fall through the cracks in the health care system.
"If you go in and talk to the different services like social security, Medicaid and a lot of the other services, you'll find that there is no description in any of their books about Batten disease, but there are descriptions of cystic fibrosis, cerebral palsy, the more common childhood disorders," says BDSRA president Johnston. "When the child progresses to where he or she needs full-time care, the only thing the insurance companies will pay for are durable medical goods like wheelchairs, and in-home skilled nursing. But most of the children usually end up with a feeding tube. They have to have breathing treatments and things like that that insurance companies define as custodial care, and they don't cover that. They don't cover diapers, feeding formulas and such things. So we either have to turn to Medicaid or Medicaid waiver programs or some other type of state waiver program. Or foot the bill ourselves."