By Stephen Young
By Stephen Young
By Stephen Young
By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
Charlie Ball, curly-haired and the quieter of Marshall's parents, is outside supervising the work crews; he will be in shortly.
Marshall Ball has been removed from his wheelchair and perched on a soft couch. He wears jeans and a knit shirt over skin so fair as to approach translucence. His limbs are thin from disuse, and he likes to chew on his hands, putting all four fingers into his mouth at once. He makes sporadic vocalizations -- not recognizable words, but undulating moans -- and arcs his neck in haphazard patterns. His green eyes move from one place to another without betraying recognition, and his mother crosses the room calmly and frequently to right him when he tips onto his side, or to pull his hand from his mouth.
Troy Ball prepares hot tea and settles in to recount a story that she has already recounted so many times, to so many people, that its highlights, which are her highlights, are almost second nature. The repetition does not bother her, because she has taken it as her role to share her gift, her son, with the world, and since Marshall's own words are so often elliptical and questioning and vague, the world comes to Troy for specific answers. She is happy to tell the story because she wants Marshall to be understood, and she is concerned that he may not be.
"You worry about your child," she says. "You worry that the information gets conveyed correctly."
Troy spent her early years in Houston and later moved with her parents to a ranch between Sealy and Bellville, where she finished high school. Charlie was raised in Odessa. Both had the advantages of well-off families, and neither was raised in what they would term a "fanatically religious" household. Nor, they say, did either family exhibit any noticeable literary bent. There is no family history of the condition afflicting Marshall.
Charlie and Troy met while both were in college at Texas A&M. After Charlie graduated, he left the country for Southeast Asia, where he worked several years in offshore construction. He ended up back in Austin by accident, he says, when a business he had invested in with a college roommate began to fail.
"So I came back to try to salvage it," he says.
Charlie stayed on, and he and Troy were married in 1985.
"We were just your prototypical yuppies, with just your regular, selfish yuppie lives," Charlie says.
Ten months later, Marshall was born.
He was a full-term baby and was sent home normal. It wasn't until the boy was nearly 9 months old that his parents realized that their son wasn't developing normally, that he couldn't hold his head up properly, that his skin was so sensitive to touch that he would pull his hand away from an embrace.
Doctors, unable to diagnose the problem, suggested that it might somehow trace back to a complication with the birth itself. Two years later, when Marshall's little brother Coulton was born, he, too, was sent home apparently normal. But by the time Coulton was 6 months old, it had become apparent that he shared with his sibling strikingly similar symptoms.
"It's kind of hard," Troy says, "to really begin to understand what it's like to go through, having children and then realizing that they're not...life isn't going the way you thought it was going to. You have this image of what it's going to be like if you have children, and they're going to grow up and then they're going to go off to college and life's going to be a certain way. And when you have children who are born different, it's really hard. You go through a lot of guilt. You know, did we do something wrong? Did we do something to ourselves that caused this problem?"
In those early years, Troy says, they held garage sales to raise rent money and relied on the support of their families. Marshall has always been sickly and slow to recover from illness, and Coulton required constant attention just to get enough calories into him to avoid tube-feeding.
Troy volunteers that the divorce rate among parents of chronically ill and special-needs children is "through the roof."
"There's this enormous financial responsibility as well as a physical strain on your life. And it really took Charlie and I getting to the point where all these conceptions that we had about how things have to be a certain way in order for life to be good had to just go down the drain. We had to get to the point where we could see the good in what we had, and very fortunately, at a young age Marshall started showing us what we had."
Until age 3, Marshall gave little sign of being aware of the world beyond his head. He did not communicate, and Charlie and Troy had no way of knowing what, if anything, he might be thinking. He was so sensitive to touch that he didn't play with toys.
"We basically said, we're going to have to set some goals, we're going to have to be productive people, because we've got to provide an income that will provide for these children's needs now and in the future," Troy says. "And we need to figure out a way to build an environment where it's possible to do things with them without enormous effort on our part. I mean, if you have to go put two children in a car and drive even a block down the road to go to a swimming pool, it takes so much energy, and after you've done that for a year or two, you're like...it's too much to transport."