by Nick Thacker
It was a good memory, and he couldn’t help smiling. Something about his demeanor must have changed, because Kate looked over. Her face was a mask—an imprint of the wife he knew so well. Her eyes were distant, and her expression was empty.
He was thinking of something to say, some question to ask Kate that might lead her out of the daze, and get her to actually be herself again. If this really was some kind of programming, what sort of triggers could he use to get her to just be Kate again? Not the Kate who fought him bitterly with the arrival of each new bill, or after long days at the office. He wanted the Kate who rolled her eyes at his jokes and then leaned her head against his shoulder, coiling her arms into his, grasping his hand as he drove. He wanted to find the trigger that would bring all this back to good.
From the middle seat behind him, though, he heard a noise he’d been dreading.
Sarah began to gasp heavily, drawing jagged breaths quickly and deeply with a slight wheeze. The sound of her asthma attack made the hair on Adam’s neck stand up. He tensed.
Not now. Please, God, not now.
There wasn’t time for this. He wasn’t prepared for this.
“Honey, are you okay?” he asked, cautiously. He knew better—knew what this was. Still, he prayed. He pleaded with God to not let it happen this time. This one time.
“She’s getting it again,” Kate said, sounding as if she might be commenting on some mundane thing, as if she were ordering an iced tea with a meal, or commenting on the weather. Was this enough, then? This was one of her triggers? This would initiate her programming?
“I know she is,” Adam said. He felt a weird mix of angry and exhausted, as if his adrenaline should be there, kicking in, but instead it was depleted, and all that was left was weariness. Still, he felt a growing frustration—an annoyance at the things that were still out of his control, despite having just upturned his life and the lives of his family. Despite taking action.
The day’s events were finally taking their toll, and he was ready to burst at the seams. We’re so close, he thought, nearly safe.
The small cabin, with its front yard carpeted in pine needles, finally poked out from around a bend in the dirt road. We’ve made it so far.
They didn’t have her inhaler. They hadn’t needed it, since something in the water had started calming the attacks. At first, that had seemed like a miracle. And then …
“Here, honey, drink some —“
“No!” Adam yelled. Kate and the children looked at him, alert even through their dim haze. None seemed surprised, none seemed bothered by the outburst. They were just waiting for input.
“I mean … no, Kate. Don’t let her drink. See if it passes.”
“It never passes, Adam. You know that.” Kate dropped the water bottle to the floor in front of her seat and turned again to look at her daughter. Sarah’s face was contorted in pain, her small form trying desperately to fight back. She began rocking back and forth, held gently by her older siblings.
“Adam, please.” Kate’s voice was calm, unwavering. She, like Adam, was used to their youngest daughter’s episodes, but their current situation certainly didn’t qualify as “normal.” The fact that Kate seemed so nonchalant, so removed from the situation, told Adam everything he needed to know.
“Kate, listen to me,” he said, lurching the truck over another worn-down pothole on the dirt road. “We need to see if this will pass. The water…”
He looked down at the water bottle she’d tossed to the floor. It was branded, store-bought water, still sealed. Maybe…
Sarah’s breathing became more labored. “Mom,” Charlie said.
“I know, honey, I know.” Kate stared at Adam. Was that her? Was she there, behind that veil? As he pulled the truck to a stop beneath the large pine tree in front of the cabin, he searched her eyes. Come on, Kate, I know you’re in there.
He wanted to see it, the flash of anger with him. The outrage for daring to let their child suffer. The fiery resolve in her eyes as an argument brewed, as she was determined to win. That same fire appeared when she was passionate about something. He’d seen it in her eyes as each of her children were born.
True, unbridled emotion.
But it wasn’t there. What he thought might build into a mother’s instinctual desire to protect her children quickly subsided—replaced by the placid, despondent and unresponsive persona that had sat next to him all this way. Back to default, no program found.
“Adam, will you please help her?” she asked, her voice dispassionate.
Damn it.
He nodded, reaching for the water bottle. Spinning the top open, he handed it back to his daughter. Sarah couldn’t quite reach it, so Sammie grabbed it, and held it up to Sarah’s mouth as her younger sister sipped.
“Thank you, Adam,” Kate said. The truck was still running, though they were parked. No one had moved to open their door. All eyes were on Sarah as they waited.
Adam knew what to expect. He’d seen it many times.
The first few sips of water would eventually start to speed through Sarah’s small body, the chemical entering her bloodstream quickly, co-mingling with her body chemistry, until the pulmonary function relaxed and slowed. Her breathing would calm enough that she could drink on her own. As she drank, her body would relax further, her respiration would slow, and he asthma attack would fade.
Worse, however, was that her mind would eventually drift away. Her spirit—the thing that made Sarah herself—would dim, and the light would fade from her eyes. She would be calmer, yes, but not herself. She’d be obedient, but it was like her free will was gone. She wasn’t Sarah anymore, but some complacent thing, wearing Sarah’s body.
Only this time it didn’t work. Something was different.
Adam watched as his daughter chugged away at the water, but she hiccuped and continued breathing heavily. The attack grew worse, and he could see sweat beading on her forehead.
“Adam, it’s not working,” Kate said. Her voice was still steady, as if her daughter’s suffering had no effect on her.
“I know,” he replied. He grabbed the bottle out of her hand and examined it. Bottled in Missouri.
He thought through the past few months at the plant. When did it begin?
He knew from anecdotal evidence that it started west of them, spreading east more quickly each year. He’d assumed that most of the continental United States would be using the system by now, but he couldn’t be entirely sure. His branch was tightly monitored, and the inbound flow of information even more so.
Apparently it hasn’t hit Missouri. He filed this information away for later use, focusing his attention again on Sarah.
“Adam, why isn’t it working?”
“Yeah, Dad, shouldn’t the water help?”
He considered telling the truth.
No, he thought. Not now. Not around the kids. He looked at Kate. Come on, Kate, please understand. Please see me.
Her eyes were fixed on him, waiting, but distant.
“Adam?” she asked.
“Nothing,” he said. “It’s — it’s the water. It’s not… the same.”
“What do you mean, Dad?”
“It’s not made the same way. I mean, it is, it’s just not prepared the same way ours is here in Colorado.”
Sarah began to convulse. Adam’s instinct kicked in and he threw his door open, moving toward the back of the truck. He lowered the tailgate and grabbed the cooler.
The twins and Kate were out of the car now, standing under the tree, watching. He swung the cooler over his shoulder and reached into the truck, unbuckling Sarah’s seatbelt. “Get inside, guys. Kate, make sure there are sheets on her bed.”
They nodded, and moved inside the house.
Instructions given, he thought.
Adam, carrying Sarah, followed them inside. He could feel heat radiating from his daughter’s small body, her convulsions growing still worse.
Inside the cabin he placed Sarah on the bed and opened
the zippered cooler. The three vials of liquid stared up at him, taunting. He clenched his teeth.
It has to be this way. You knew it might go this way.
He grabbed one of the vials and opened the twist-on cap. Careful not to spill any, he turned it sideways and let a few drops fall into the bottle of water that Kate had placed next to the bed. The kids and Kate watched as Adam shook the bottle, unscrewed the cap again, and started to hand it to Sarah.
It shouldn’t be this way.
He pulled the bottle back.
Is it worth it?
The thought raced through his mind, then disappeared. Could he really just stand by and watch Sarah suffer, or worse? His own child? Had he really just thought that?
Still, something nagged at him. He looked at his daughter, her beautiful, curly locks of reddish-brown hair, now partially matted to her forehead. He watched her chest rise and fall with the painful waves of convulsions that tortured her.
It would be easier for her…
There it was again. The terrifying, disgusting thought. Let his daughter suffer, rather than save her. It wasn’t an option. He touched the bottle to her lips and let her drink. She swallowed in deep gulps, unable to drink slowly.
Adam felt his face begin to flush, the tears welling up just over the surface of his eyes.
Who am I now? Who have I become?
He stared down at Sarah, ignoring the rest of his family. This girl, this precious girl. Their miracle child.
Sarah was born frail, her bones weak and her blood barely thick enough to sustain her. The doctors were able to work their magic and bring her up to health, but Adam and Kate had always been a little extra protective of her since then. The twins understood, and they grew to become their little sister’s protectors as well. A lot of life, at that time, seemed to center on making sure Sarah was taken care of.
Sarah grew up so fast. And she was smart. She amazed everyone with her vocabulary and her cleverness, even at just three or four years old. Later she was accelerated in school, almost two full grades ahead of her classmates.
Her physical development, though, was something Adam and Kate constantly worried over.
Sarah had been diagnosed with Turner Syndrome—a somewhat rare condition that affected maybe one in 2,500 girls born every year, primarily in the US and other developed nations. Girls born with the syndrome were missing part or all of one of their X chromosomes. The effect was stunted growth and development, and later an underdevelopment in sexual maturity, delaying and complicating puberty. Thankfully, Sarah seemed to lack some of the other potential effects of TS, such as physical deformities in her hands, feet, and ears. But her slow overall physical development was a concern.
They had explored as many available options for treatment as they could turn up, looking for answers from specialists with all sorts of medical and professional backgrounds. It was an expensive process—and the bills had piled up as they searched. It was part of the reason Adam had become so engrossed in his work, fighting his way up the ladder to a management role, in order to bring in the money and security they needed. And yet, with all the doctor visits and consultations, with all the lost hours spent in his office rather than spending them with his wife and kids, nothing seemed to really change for Sarah. She remained frail and small.
One suggested path of treatment for adjusting and facilitating growth in underdeveloped children was the use of synthetic human growth hormones, and specialized treatments that focused on marrow production and muscle growth. Medicine had progressed enough that these procedures were as simple as a shot once a month until the child hit puberty. There were hardly any downsides.
Except there were downsides.
Some patients experienced pain in their muscled and joints, mostly due to nerve irritation. They might experience edema—a swelling caused by fluid build up, which was already a danger for children with TS. And there were additional risks that could seriously impact her health—such as diabetes, or even the growth of cancerous tumors.
Even without these risks, Adam was reluctant about messing with the body’s natural chemistry. Through his work he had seen plenty of procedural chemistry go wrong. Strange and unexpected things could happen when man-made chemicals and hormones met with natural body chemistry, and the results could be devastating. Adam wasn’t a luddite—he believed that science could help. But he was cautious. He wanted to see more studies, more time-tested results. He wanted hard facts, not hypotheses, no matter how well educated they may be.
Kate was less reluctant. She was swayed by the promises made by the doctors, as well as the case studies she’d read and heard about. Her Google history read like a graduate-level medical school syllabus, and she’d spent more time on WebMD than was healthy for anyone. She believed these treatments could help, despite the risks. She wanted to try. Demanded they try. Which put Adam in the awkward position of having to say no.
The disagreement about treatment for Sarah had been one of the niggling starts—a sore spot that kept coming up, day after day. Kate would present him with paper after paper showing the results of human growth hormone research, and Adam would restate his position on tampering with the natural chemistry of the body. He pointed out the reported side effects and failures for those procedures, listed right in the very papers Kate was reading. They should wait. They should see more specialists. They should get more opinions and make a more informed decision.
Kata accused him of putting this job before their daughter’s health, which galled him to no end. He was putting in the long hours because of his daughter. Her health was the most important thing to him, couldn’t she see that? He was happy enough, with his mid-level job and his average salary and his annual bonus. But they needed the extra income. This was for Sarah—for all of them.
The long hours at the office, and Adam's reluctance to subject Sarah to experimental treatments, had slowly worn at their marriage. The fights started, small at first but escalating over time. The peace of the house was shattered, which only further encouraged Adam to spend less time there, and more time at the office. Bitterness took root, and he and Kate grew further apart.
Adam thought things might get better when he had finally capitulated on a hormone treatment.
Kate had found it first, of course, combing the internet for hope. The results of the study were released only a day or so before—a report on over eight years of research with Turner Syndrome patients. Kate had dropped an iPad into Adam’s lap as he leaned back against the headboard of their bed one evening, after a particularly grueling day at work. She hadn’t said a word, but had just left the room to let him read.
Adam had read so many of these. He’d also just spent the past ten hours reading reports on chemical analysis, much of it tied to hormone research as well. The last thing he wanted was to dig into yet another medical study, promising yet another miracle cure.
But as he read, his reluctance and exhaustion evaporated, replaced by a growing excitement. This study had been meticulous. The treatment outlined was cautious, only aggressive at certain stages, and it was adjusted per patient, based on a number of genetic factors. It was highly targeted for each individual. And it had a 98% success rate, with over a thousand test subjects in an eight-year span.
Sarah was also a prime candidate for this type of treatment. She was strong enough without it, and her health wasn’t nearly as poor as some of the other children who had participated in the study. In fact, one of the subjects had nearly identical symptoms and health issues to Sarah’s. This part of the study had been highlighted in yellow, indicating that Kate had made the same connection.
This was what Adam had needed to see. This was exactly the sort of treatment he’d been looking for. He got out of bed, carried the iPad into the living room, and found Kate at the family computer. She turned and looked at him, rotating her upper body so he could see the screen. She had already filled out the forms online, to request an appointment with the lead physician on the study. She was maki
ng the appointment.
Adam had only nodded, and turned to go back to bed.
A week later, they started treatment.
And it worked. Sarah quickly started showing signs of physical development. She hit a growth spurt just months after treatment began, and within one year she was in the 90th percentile for height amongst her peers. She even became competitive in physical education class—no longer useless to the kickball teams on the playground (something she was more excited about than Adam and Kate were). She started making more friends, and no longer had to stay home after school when the other kids went to the park or played street hockey.
She had a life, full of health and vigor.
But it was near her tenth birthday that Adam and Kate noticed the subtle differences. Sarah was growing quickly, physically and mentally, but she was also getting sick more often. She started getting asthma attacks after she turned nine, and even her doctors were unsure if it was a symptom of her under development or a side effect of the treatments. No medicine seemed to work, at least not indefinitely. At that time, Sarah was placed on a regimen of inhalers, and they were cautioned to remove her from many of the physical activities she had come to enjoy. Sarah was inconsolable at times, bursting into tears when she was told she couldn’t participate in soccer or volleyball after school.
In many ways, it felt like a huge leap backwards for all of them.
Adam went through a bout of blaming himself, feeling a constant nagging of regret and shame for letting his daughter down. He knew this was ridiculous—he and Kate had decided on this treatment together, and it had actually helped Sarah have a much better quality of life. Still, the regret was there. And with it came resentment.
He couldn’t help it. Some small part of him believed that Kate had bullied him into agreeing to the treatment. And now, as Sarah slid into frailty again, he wasn’t able to keep that resentment from bubbling to the surface now and again.