Chapter Four- Fading Genes


Ada glanced across the dinner table several times, noting her brother's usual enthusiasm was missing and he hardly touched his dinner. He sat there poking at the food, staring off into a haze.

The half hour they spent at the dinner table was the longest of Ada's life. Her father told her he had to talk to them both after dinner and ever since then, time moved at a snail's pace. The hour since they arrived back home felt like twenty hours and the dinner normally filled with chatter was silent, minus a few coughs and utensils hitting the plates.

It was after dinner when they moved to the porch, her parents telling her and her brother they needed to talk about something. Knowing her mom and dad had come from a doctor's appointment, she realized whatever was happening would be big.

There was about fifteen minutes of pacing and throat clearing from her father before her mother got a few words out of her mouth; four to be exact. Four words that caused Ada's face to turn white, her hair to stand up on her arms, her body to tighten and shake and her breath to catch.

If Peter had said anything, she couldn't hear him; but she was certain no one had said a word after those four words. Every time Ada tried to, she opened her mouth to ask some question she couldn't think of or give some reassurance she couldn't muster, but the words never came to her, so she had to close her mouth. This went on for another lifetime.

Ada wanted to run away from all this, but her feet wouldn't do much of anything, no matter how much she willed them to. She wanted to plead to the heavens to take this all back. She wasn't religious at all, but it couldn't hurt, could it?

The sun was halfway through its descent, just above the tree line in the distance. The sky was full of hues of pinks and oranges and the birds were finding their way home to their young. Spring air was becoming more brisk as evening neared, prickling at her skin. Its breeze whistled as it passed through the branches and twigs and made her mother's long curls dance.

Ada wondered what she'd remember about this day.

Would she remember that awkward moment in class or the kind comments from Mr. B? Would she recall her brother hinting at his first crush? What would she take out of this day besides the words of her parents that shook the foundation of their way of life?

Whether it had been five minutes or an hour since her mother's confession, Ada couldn't be certain. The only thing she was certain of in that moment was her bloodshot eyes and clenched grasp on the armrest of the porch swing was giving her away and the fact that she was already sitting down was the only thing stopping her from crumbling into a thousand pieces and letting the evening's breeze sweep her remains between the paint-chipped floor boards.

Ada wiped her tear-filled eyes with her free, trembling hand and opened her mouth to speak, but only a slight squeak escaped her lips. She sucked in a slow, shaky breath, one after another, taking in the spring air. The tears gathered there beneath her eyelids, threatening Ada with tears she seemed to be in an endless supply of.

It happened three or four times so far. Ada would try to gain her composure, to look strong in front of her parents and appear somewhat composed in front of Peter. Yet every time Ada felt like she'd managed, she tried to speak and instead fell apart.

It felt like over five minutes of unrelenting pain, more than an hour of agonizing fear.

"It's," her voice came out as little more than a faint whimper and Ada let out a cough to strengthen it. "It's genetic, isn't it?" Ada questioned as she stared at the old beat up floor board, focusing on a nail coming up.

Her mother's heavy breaths filled the quieting dusk in an almost deafening way. "It's genetic, yes. My mom had it. She started showing symptoms in her early forties, but we didn't know what it was until much later." Each word her mother spoke came out shaky, catching in her throat before trickling out of her mouth.

Ada didn't know much about the disorder, but she'd heard enough to realize it would change everything. "And she died when she was fifty-eight."

Ada hardly knew her grandmother. She died when she was only seven, and remembered there was never much left of her. Ada knew the shell, nothing else. "You can get tested to see if you carry the gene, right? That's Huntington's?"

"I took the test after Peter was born. They diagnosed my mom right before I found out I was pregnant with him. By then she was too far gone for any medication to help. I don't know if she was in denial that anything was wrong or if she already knew..."

Her mother knew for over ten years she had this disease. She knew and said nothing, at least not to her. Ada assumed her father knew. He didn't seem like a man who'd just been hit with a reality bomb. He looked like a man crushed by time he wished for more of.

"So what will happen?" Ada questioned aloud. She hadn't a clue if she meant with the disease or with their lives.

Her mom sat next to Ada, and they watched as her dad brought Peter into the house, most likely to tell them what would happen separately. Peter would get a toned-down version, easing him into the truth of what would become of their mother. Ada would not be so lucky. She'd never wished to go back to her childhood before that moment. She wanted to be Peter so much in that moment, to live in a small amount of denial and easier acceptance of their mother's fate rather than face the impossible, relentless truth of what was to come.

"Now that the doctor's have confirmed I'm in the early stages, they'll put me on medications to lessen the symptoms, but there's nothing that can stop it or slow it down. My moods will get more... moody, I guess. Behavior will change. Ability to reason will go. Right now I lose my balance, but soon my muscles will do things on their own. I have an appointment with a psychotherapist and a physical therapist next week in Wittenburg. I guess I'll have a clearer picture by then of what will happen. With my mom, I lived on the other side of the country, so I didn't see a lot of it. I just knew it was bad.

"I won't lie to you, sweetie, this will be tough. Things will never be the same and that really breaks my heart because we've got a good thing going here."

And they did. What her family had was an incredible bond with one another. It was true she was different from her parents. She was the respectable one. The responsible one. They said whatever was on their minds like word vomit and needed reminders to send bills in on time. But they all loved each other undoubtedly and unconditionally. They were each other's strength. Ada only wished she had more of that to give to her mother, though her mother appeared to be the strong one in that moment.

"What are you thinking Ada?"

"I'm thinking..."

Her brain was hazy, floating from one thing to the next before she could finish an actual thought process. It hopped from responsibility to grief to anger to the desire to flee, as if this was something she could run from.

A calm passed through her, a warmth of body despite the bite in the breeze. Ada closed her eyes and drew a deep, steady breath, letting everything, every emotion and every glimpse of the future, ease into place in her mind. Ada closed her eyes and spoke the words. "I'm not going to Brown in the fall."

Saying the words aloud gave her an acceptance. Life would be different. Her family, her future and she herself would change; evolve. The tears which threatened to take over her and then seemed to disappear would return at some point, she didn't doubt that. Anger, too. But for now her truth, her acceptance, was stronger than the sorrow or anger. Maybe she was more numb to it all, which wasn't so bad. Let the pain come later.

"Yes, you are," her mom responded with a fierce tone. She felt her mother's hand on hers. "You're going. I'll never forgive myself if you give up college."

Ada's eyes opened, and she looked at her mother. It was in that moment that she didn't just accept it. "And I could never forgive myself if I went. It isn't just about you guys needing me, mom. It's about me needing you."

Ada took a minute to take in her mother's beauty. She was so vibrant that this was difficult to understand. Her mind understood that death and disease knew no boundaries, yet her mother looked so young, too young to have an eldest daughter in her twenties. After three children, she still turned heads everywhere she went.

That's what made the truth so hard to swallow and prevented the pain from swallowing her whole.

How can you believe in such an impossible truth you cannot see? How could you accept something when shown the opposite?

It was so easy to be in denial in all the little ways that kept her in one piece. She couldn't see the disease on her mother. She couldn't hear it in her voice.

But that's what her mother wanted her to see; strength. She showed her that because she needed to feel it in herself and in Ada.

"Whatever time we have left where you're still you, I don't want to miss it. I don't want to go to college and start a new life where I'm home a few times a year and chunks of who you aren't there anymore.

"Please don't fight me on this, mom. You need my help and I need you and that's all there is to it."

Her mom leaned back on the porch swing, but kept her eyes on Ada. "Right now, I feel okay. I can still work and still be a mom. But college is your decision and I'll support you no matter what you decide."

They sat together, listening as dusk brought silence and a sense of peace.

*********************

"Is mom going to die?" Peter questioned as he sat at the end of her bed. He'd begged to sleep in her room on the couch, something he hadn't done since he was seven.

Ada had gotten an hour of research done before he'd come down, so she knew the answer to his question. Her mother would have fifteen to twenty years of life from when symptoms appear, but that was her heart stopping. How long she would have her spirit for, Ada hadn't a clue.

"Mom will be alive for a long time yet."

"Are you scared?"

"Yeah, Peter. I'm scared." There was no point in denying it. Tonight she was treating her bed like it was a life raft, too scared to leave it. "Are you?"

His head dipped. "I don't know what it is. All dad told me was that mom was still gonna be mom and that I'd notice little things, but I shouldn't worry because there're medications that help make the symptoms not feel so scary."

"It's something that will change our family forever," she admitted. She didn't want to scare her brother, but she didn't want everything to blind side him either. "Everything will get a lot harder, so I need you to step up whenever you can."

Peter looked up at her. "What do you need me to do?"

Ada thought for a moment. "This summer will be crazy. I'm going to have a hard time running the shop and working at the coffee shop. I'll have Nonnie's help, but dad says she wants to cut down."

"I can help."

"What I need from you is to not to end up in summer school. You need to talk to your teachers and do whatever it takes, otherwise that's just going to be more stress on mom and dad and another thing I have to make time for. I love you, kid, but I'm going to have a hard enough time keeping up as it is."

"I'll talk to them," he groaned, disappointed that she didn't ask for something else.

Ada ruffled his curly hair. "And if you do that, if you don't have to take any classes over again, I will pay for you to go to that summer camp you wanted to go to last year."

His face brightened, cheering up Ada in a small way. He'd wanted to go the year before, but they couldn't afford it. If she wasn't going to use her savings for college, she could at least do something good with it. It was a sleep-away camp, so it would also be less stress on her. It was like sending him off to boarding school, except he didn't see it as being sent off and it would be a lot more fun.

"Did Nonnie know our other grandma?"

Ada did her best to smile and wiped her brother's bangs out of her brother's face. "They met a few times, before mom's mom started getting bad. They liked each other, I think."

"Do you remember her?"

"A little." Not wanting to get into it, Ada changed the subject. "Time to go to bed now, Peter."

He gave her a kiss on the cheek, said 'goodnight' and crawled under the blanket next to her. He was supposed to sleep on the couch, but she wasn't about to kick him out. Instead, she read while he slept, learning more and more about an illness she wanted to pretend didn't exist at all. 

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