Captive Dreams
Page 19
“No telling what amuses a rug rat.”
“Bill, she’s not crawling yet. It worries me. Yesterday I set a ball in front of her and all she did was look at it. Then she looked at the clock—or I think she looked at the clock. She stared in that direction, anyhow. Then she looked at the picture of your grandparents.”
“The round one on the wall?”
“That’s the one. I don’t know what she found so fascinating. She can’t see anything but the shape at this age.”
Bill had been reading specifications on his flat screen, which he liked to prop up at the table when he ate, and so he had only half his mind on the conversation. “I’m sure she’s all right.”
But then later, after they had done the dishes, he stepped quietly into Rachel’s room. The baby lay wide awake in her crib, and she was reaching for the mobile, then for the netting on the bedside, then for the mobile again. Bill thought she might be gauging distances. “Planning your escape, are you?” he said.
Rachel glanced at him, then just as quickly glanced away. He wondered why she now seemed to avoid eye contact.
“Aaa,” said Rachel. “A aa a aaa.”
Bill nodded. According to the PERT diagram he had made of infant development, babies began breaking their sounds into “syllable-like” intervals in imitation of the voices they heard around them. But she had already been doing so at five months, and ought to have started adding consonants by now. If the truth be told, he was waiting for her first “da-da.”
Her leg was definitely twitching.
Bill returned to the living room and began absently to gather up the papers he had spread out on the coffee table.
“I’m sorry, dear,” Karen said. “I thought you were done with the drawings and I folded them up.”
Bill was still thinking about Rachel’s actions. He stuffed the hard copies into a drawing folder and zipped it up. “Don’t worry,” he said. “I’ve looked at them often enough I don’t need to look at them anymore.”
Karen found Rachel sitting up in her crib and instead of napping she was dropping toys over the safety rail. One of the things babies do, their pediatrician told them, was to throw toys. Early on, something in the brain completes itself, and the baby connects the rattling sound she hears with the rattle she sees in her hand. After that they try to learn what kind of sounds everything makes. They also try to put them in their mouths, not only to learn the taste, but to learn the texture. The lips are the most sensitive organ of touch.
Most of the toys were already on the floor, and Karen sighed and bent to pick them up. “You shouldn’t throw your toys on the floor,” she told Rachel, even though she knew the baby ought to do precisely that. “You make Mommy pick them up.”
Rachel shot her a glance that almost seemed to say, well that’s what mommies are for! Then she took Lambie Pie, a plush animal nearly as big as she was and pushed it to the rail. In her other hand she had a lightweight rubber ducky squeeze toy. She pushed both of them over at the same time and watched them fall. Her left hand twitched, thumb, forefinger, middle finger. When the toys hit the floor, she laughed and bounced, beating both arms in tempo.
Karen sighed. “You did that on purpose, didn’t you? To give Mommy more work.”
Rachel said, “Fah seh!” She followed this with a raspberry sound.
At least she was finally using consonants.
Rachel had discovered how to splash the water in her bath. Karen had placed her in her Baby’s Own Tub and Rachel stared as if hypnotized at the water line as it rose. When Karen raised the washcloth, Rachel fussed and shook her head. Since she was usually cooperative in her bathing, Karen hesitated, wondering if something were wrong. Rachel placed her hand on the surface and kept it there in perfect stillness, as if entranced by the winking water. Then she pushed her hand slowly underwater. She repeated this several times with a look of such intensity that Karen almost laughed. The last time, Rachel smacked the water hard with her palm, splashing herself and Karen.
This was evidently very funny. But then her left arm and leg began to spasm uncontrollably and the baby began to cry.
“The tremors have been getting worse,” Karen told Jessica one day when they had been invited to dinner with the Singers. SingerLabs was flourishing, and so the Singer house was one of the better homes in the neighborhood. The computer guru around the other side of the ring road might have a better one, but he never had guests in, so the matter was indeterminate.
It was one of those long, balmy summer days when the sun lingered and the clouds were golden brush-strokes high in a deep blue sky. After the meal, the four of them retired to the deck with drinks and contemplated the sunset over the small woodland behind the house. During the high summer, when the trees were fully clothed, it was hard to make out the backs of the houses on the other side and one could pretend that the woods ran primeval to the river.
Jessica Burton-Peeler frowned and asked about the tremors, and Karen told them of the toy-tossing, the water splashing, the leg jerks, and all the rest. Charlie smiled at the account of Rachel’s concern with the rising water in her tub and said, “Did she cry ‘Eureka!’?” But the Bruscos didn’t get it and a sharp glance from Jessie forestalled any explanation.
“Mom came over to watch her,” Karen said, “and she said she’s noticed it, too. I think it’s something neurological.”
Bill shook his head and paused with his drink raised. “I think someone at the Design Center screwed up.”
Charlie Singer pursed his lips. “Maybe not,” he said, then he left the deck and went into the house to fetch a notebook from his office. When he returned, he asked Bill, “Did your doctor…”
“Dr. deNangle.”
“Did Dr. deNangle explain the complexity of the gene-to-trait relationship?”
“Everyone knows it’s complicated stuff.”
“Hm. Well, there’s different sorts of complication. Disorganized complexity is marked by large numbers of variables whose effects can’t be understood analytically, only statistically. Organized simplicity, on the other hand, has few variables tied together in deterministic relationships. In between, we have organized complexity. In the early stages of design, the relationships can be understood analytically, although there may be strong variables and weak variables; but in later phases unanticipated factors—environmental factors, for example—come into play, what we call noise factors, and again we’re faced with random fluctuations and stochastic processes. With me so far?”
Bill nodded with more certainty than he felt.
“Now genetics, like quantum mechanics, is a case of organized complexity. There are analytical equations—but with stochastic outcomes. Take a look at this…” He opened the notebook.
“…This here puppy is a second-level indenture for a nanomachine we’re building at the plant. It’s supposed to be a transmission pump for metering…Well, that doesn’t matter. It’s got itself four functional requirements—the Ys—and each is affected by one or more of eight design parameters—the Xs. The b coefficients indicate the amount by which this X affects that Y.”
Bill nodded. “Yes, I can see that, but what has it got to do with Rachel?”
“Most traits are affected by many genes,” Charlie said, “and most genes affect many traits. That’s why the genome is like a mobile. Jiggle one part, and other parts wiggle; sometimes in ways you don’t expect.” He pointed to the matrix. “Think of the Ys as traits and the Xs as genes. Now suppose you wanted to optimize Y1. Maybe that’s nose length. Then you would have to work on the genes X1, X3, X4, X7, and X8. Now, I can jigger X1 wherever I want, and it only affects nose length. But when I target X4, it’ll also affect Y3. And targeting X3, X7, and X8 will impact all the other Ys. You see? This design is what we call ‘coupled.’ Like a faucet where you have a hot and a cold knob to control both the volume and the temperature of the water. Now, this is a simple nanomachine, and only the second indenture of the design. A human will have thousands of Ys and thousands of
Xs and Lord-knows-how-many indentures. You had the design center optimize a set of Ys—let’s say Y1, Y2, and Y3—that added up to physical beauty. To do that, they had to target this set of Xs. But evidently, one or more of those Xs had an effect on Y4, on Rachel’s nervous system; and as those genes have realized during her somatic development, they’ve given her the twitchies.”
Bill sighed and said, “I wish you had explained this to me, and not Dr. deNangle.” But Karen began to weep quietly, and Jessie kicked Charlie’s ankle under the patio table and gave him the Look.
Charlie understood and clapped his mouth shut. He always leapt to factual explanations when emotional comfort was needed. So he did not add that the matter became even more uncertain when you realized that in a complex organism like a human being most of the matrix entries contained question marks.
It took three tries for Karen to see the specialist. First, their primary caregiver made an error entering the neurologist’s federal registration number; then they had to go back to the Choice Center to get the certified genetic profile; and only then were they properly scheduled. By that time, Rachel was using recognizable words like dada and mama and wawa in proper context, and the periodic spasms on her left side were an almost daily occurrence.
In some indefinable sense, Rachel seemed aware of this; for she scowled mightily whenever her leg or arm began to jerk; and once Karen saw her hit herself in the leg, saying “nono,” as if the leg were a disobedient toy.
The pediatric neurologist looked tired. The appointment was late in the day and the waiting room had been crowded. Dr. Powell—please call me Harriet—had studied carefully the lab results from Dr. Khan, the pediatrician, and the genetic tables from Dr. deNangle, and had made a very thorough examination of Rachel herself.
“Who was Stephen Hawking?” asked Karen when Dr. Powell had tried to explain.
“He was a famous scientist who had a condition similar to Rachel’s.”
Something in the smug announcement irritated Karen. “Why should I care if someone else had the same problem?”
“Not ‘problem,’ but ‘condition.’ A problem is what you make it. Hawking was a brilliant man and accomplished great things in physics.”
“Why do you think that would comfort me?” Bill, sitting silently beside her, placed a hand on her arm, but she shrugged it off.
“Because,” said the doctor—and only a touch of her weariness seeped through her words, “because it is a manageable condition. So is the autism.”
“Autism? What do you mean ‘manageable’? Autism, too?” There was glass in Karen’s voice. She had not broken yet, but she might.
“The two are not unrelated,” the doctor told her in that evasive, backward-turning way that scientists had. “Mild autism is often associated with genius. The ability to focus, to dwell unreservedly in that interior world has led to great insight in mathematics, science, the arts…”
“You mean ‘idiot savants’…”
The doctor frowned and pursed her lips. “We don’t like that term.”
“I don’t like what the term means.”
Bill, that useless lump, finally spoke. He said only, “Karen…” But at least he had said something.
“There are programs,” the doctor assured them. “You may even be eligible for state funding, since cases like this have been increasing in the past few years. With the help of therapists, there is better than a fifty percent probability that Rachel could be almost like other children, with only the odd quirk and a bit of absentmindedness.”
“Manageable…,” Karen said through numbed lips.
“What doctor Powell means…,” said Bill.
“Is that she can’t be cured! I know what manageable means, Bill! I don’t think you do. And neither does she.”
The doctor did not react to the verbal slap, and it occurred to Karen that Dr. Powell had heard such things unnumbered times before. She handed Karen a sheaf of documents that had to be completed to qualify for the government money, but when Karen rose without taking them she handed them to Bill instead.
“Thank you, doctor,” he said.
“Call me Harriet.”
Karen had to think things over, to come to terms, and she could not do that surrounded by noise. Rachel was tired and cranky from the drive to see the specialist; and all Bill could do was yammer foolishly about the support program, the federal money, and the ten-hours-a-day therapy. Karen left the baby with him and took a long walk around the neighborhood.
Two roads fishhooked into one another, forming a rough oval and enfolding in their handshake a woodland surrounded by private property. Technically, the woods were public land, part of the Green Acres program, and there was actually an easement along the creek where it ventured out of its culvert to wind through the north quarter of the woods. But as a practical matter it was almost like a private reserve. Karen caught glimpses of the trees and bushes between the houses she passed. The leaves were just turning russet and orange.
When she was three-quarters around the oval and approaching the culvert, the door flew open on one of the houses and a woman came out with a small boy in tow. Karen did not know her neighbors on this side of the woods, so she delivered an anonymous hello. For answer she received a suspicious glance. A pedestrian? Here? And the woman stepped between Karen and the boy. “Hello,” she allowed. Then, to the boy: “Get in the car, Ethan. Vincent! Are you coming?”
A dark-haired, scaled-down model of a man emerged from the house. He was half a head shorter than the woman, as if his last adolescent growth spurt had never taken place. A walking optical illusion, he seemed a little farther away than he actually was. He noticed Karen and nodded in a cool, but friendly fashion.
“I’m from around the other side, on Edward Road,” Karen explained. “I’ve been taking a walk.” She had not wanted to explain anything; she had wanted only to be alone with her thoughts. “Have a nice day.”
She started to move on, but at that moment little Ethan, who had been standing stock still, stepped for the car door and bumped into it, whereupon he froze once more. That was when Karen remembered. “Oh! This is the house where those demonstrators were making all the noise a few years ago. That was just before we moved in, but the realtor was worried about what it would do to property prices.”
“What it would do to his commission, you mean,” said the little man. He wasn’t small enough to be a midget, but Karen found it hard not to stare at him.
“Your boy,” Karen said, but then stopped unsure of how to continue. The boy in question had closed his eyes and reached out to grasp the handle of the door, which he did with no trouble. He opened it and it bumped him a little so that he staggered. The woman quickly gathered him up and lifted him into the back seat to buckle him securely in place.
The woman rose from her task and favored Karen with a hostile look. “What about him?”
“Well, my daughter…” Now it was Karen’s turn to hesitate. But then a moment later she was pouring out all her frustrations on two perfect strangers. They listened, first with surprise, then with close attention, finally with sympathy.
“My Ethan’s problem is different,” said the woman, who finally introduced herself as Alma. “He’s retarded. Did you know that what you see and what you hear and what you touch reaches the brain at different times? It’s true. But something in our brain coordinates all our senses and knits them together. Ethan’s time lags are too long and he can’t coordinate them properly. So he is always seeing and hearing something a few moments in the past; and what he hears and what he sees are not always the same thing. I’ve been trying to teach him to close his eyes before he tries to do anything. That ‘clears the buffer’ for a short while. Until his senses get all out of synch again.”
Karen made sympathetic sounds. “Does it ever get to you? Are there ever times when you think you can’t do it anymore?”
But Alma shook her head. “Ethan is my life.” Ethan, in the back seat, cried out something blurred and
uncertain, like a deaf boy. Karen shuddered and knew that Alma was lying, perhaps most of all to herself.
“It’s the pollution,” Vincent said firmly. “Electric power lines, fracking, you name it. That’s why we see more and more birth defects.”
Karen made a wan smile. “Not in my case. It seems to be a design problem, what the genetic engineers call ‘functional coupling.’”
Alma’s smile froze and Vincent pursed his lips. “It’s a designer baby?” Karen nodded and Vincent said, “Then you brought it on yourself.”
When Karen went to see Dr. deNangle she was surprised to learn that he already knew about the baby’s neurological problems. But all practitioners and specialists were required by law in the case of designed babies to inform the originating Design Center of any quality control issues. A few years earlier, Dr. deNangle reminded her, there had been a big recall.
“And that’s the good news,” he told her. “Rachel is still under warranty. You can still bring her in for non-conforming material control.” He smiled as the babies in the holograms on his wall smiled: beautiful and broad. He even resembled them somewhat, with his chubby cheeks and soft features.
“I don’t know about that,” Karen said. “I mean, the defect has nothing to do with the design. We asked for a beautiful child, and that’s what we got. The neurological problems…”
“…are probably a side-effect of the genetic adjustments we made, so they’d be covered. Don’t worry, the warranty replacement costs are backed with the full faith and credit of the United States Government. In a way, it’s even good news. We can take samples from Rachel and study them and learn what went wrong. That way, the next rev level will be an improvement.”
Karen recalled the explanation that Charlie Singer had given Bill: how one gene might affect multiple functions, depending on a complex interplay of timing, environmental cues, and neighboring genes. She hadn’t understood everything Charlie and Bill had talked about, but as a technical writer she could grasp the essentials of any topic.