by Violet Duke
Brian’s hand gripped the handrail tighter to avoid reaching for her.
A frustrated strength began vibrating through in her words. “I know everyone thinks it’s better for me not to take the gene test, and I understand why. If it comes back positive, all that tells me is that I’m going to get HD one day, and that’s it, that’s all it’ll tell me. Not when, not how. So I get it. Everyone’s worried that I’m going to get all depressed and give up. Or that I’m going to get all stupid with my life because I think I’m going to die anyway.” A shudder wobbled her voice. “But what everyone doesn’t get is that not knowing makes me feel all of that anyway and more. I feel like I’m not getting to…I don’t know, accept it, or deal with it.”
Skylar paused, blinking in thought as if trying to find the right words. At Tessa’s encouraging nod, she turned to face him fully. “Okay, dad, pretend…pretend that an awful killer who knew all of your biggest nightmares was chasing you, and you were trapped, with no chance of getting away. And he told you all these horrible things he was going to do to make you suffer a long and slow death…and that he was going to start right away. Like tomorrow.” Her voice crackled on a broken cry as she bit out, “Now pretend he didn’t do it tomorrow. But he let you go for another day just so he could chase you, trap you, and tell you all those scary things all over again. Then again. And again.”
Oh, dear God.
“That’s what I feel every day. And I can’t ever stop being afraid because every day I wake up and it starts all over again. I wonder, I get angry, I get scared, and I just. Can’t. Breathe.”
He caught her as she crumpled down to her knees and cried in earnest now. Wrapping his arms around her, he held her as her tears ran without end, as the terrifying descriptions of what she’d been holding inside slashed thousands of knife wounds across his chest, flayed it wide open. “We’ll get you through this, Sky-bug,” he whispered against her hair. “We’ll do whatever we have to so you don’t feel like this anymore.”
How he was going to make good on that, he had no idea.
AFTER WITNESSING what had happened with Skylar, and what Brian went through seeing his little girl in that kind of pain, Tessa knew it was finally the beginning of the end.
Looking at her bookshelf, she thought about the one Brian had in his house—chock full of once-in-a-lifetime experiences, happy candids, treasured mementos and souvenirs. While her own lack of memories and keepsakes was a reminder of all she’d never had, his abundance of them reminded her of all he’d once had and then lost.
So much loss already.
Opening her file cabinet, she pulled a copy of an article that would be getting published in a few months, one she felt strongly about, regarding an important issue she’d been involved in and spreading awareness about since she’d discovered her voice in the silence.
Predictive Genetic Testing for Early Teens: A Longitudinal Case Study
Even if it would combat everything Brian believed to be true and best for Skylar, even if it would pain her to have him read it. Even when, not if, it would likely damage their relationship irrevocably, she had to help him, help Skylar.
She scanned the article and highlighted the sections she needed Brian to read, before sliding it into the manila envelope with the program pamphlets and other information she’d put together for both Brian and Skylar to read. Grabbing her keys and her bags, she quickly loaded her trunk and left for Brian’s house before she could talk herself out of it.
He only lived a few minutes away. For years, they’d been so close and yet a lifetime apart. Still were. Still would be. It was a reality they just couldn’t avoid, it seemed.
The door opened before she even stepped foot on the porch, and the smile Brian gave her was one she knew she’d hold onto, even if she couldn’t put it on her shelf. The way he looked at her would always be one of her most treasured keepsakes, her most prized memory of all she’d once had.
And lost.
“Hey, I have that article and the other information I was telling you about.”
“You’re a lifesaver. I’ve been talking with a few genetic counselors and scouring the internet but all the majority still keep citing fifteen as the absolute youngest age to have the gene testing done. Even then, most say it’s ill-advised.”
And that was definitely a valid, medically sound point of view. Still, she had her own thoughts on the matter. “Here you go.” She handed him the envelope. “The highlighted article is just for you; it’s different from most of the literature out there. And with it, I’ve also included some pamphlets for programs I’ve been working with that I think Skylar should go to so she can meet with folks of all ages living with HD. And I’ve included the number of the outreach director for several care homes that specialize in Huntington’s patients—the one in Cactus Creek included. They’ll all be able to arrange visits, and set-up meetings with teens and adults who’ve done the gene test as teens, along with their families. These are folks I know and trust.”
Brian looked overwhelmed. “The doctors and counselors didn’t even mention a third of this. Have you talked to Skylar about these already?”
“Some of it. But now that she’s talked to you about really pursuing the testing, it’s time. I’ve seen cases where the simple act of talking to these people has helped tremendously. Sometimes, just the added knowledge was what they needed to stop feeling like a powerless victim. A lot of times, that’s precisely why some individuals take the test, because they’re looking for control in an otherwise uncontrollable situation, over an undetermined fate.”
He dragged her in close for a hug. “Thank you. For all of this, and for just being there. For being you.”
She closed her eyes and breathed him in, not wanting to let go.
But she eventually had to. “I better get going. I’m heading out to the airport now.”
“Already? I thought you weren’t leaving for your trip until tomorrow.”
“I changed my flight plans. I’m going up a day ahead of Connor to get everything set-up.”
“I’m going to have to talk to my brother about his making you travel so much,” he teased, looking like he was missing her already.
She was too.
“At least let me give you proper goodbye kiss.”
He leaned in and kissed her gently, but thoroughly. Like he had all the time in the world, but none of the restraint. She loved that about his kisses. They always went straight to her head. Her heart.
“So I’ll see you the night you get back?”
She had to get out of there before she caved. “I’m not sure yet.”
“Okay, well that weekend, then?”
Sliding into her car, she said lightly, “No making plans further than a week out, remember?” She closed the door quickly and started the engine, rolling down the window for one final goodbye. “I’ll call you. In the meantime, read the literature. Start with the article. And make sure you and Skylar go through the packet to see which ones she might want to do.”
“Tessa—”
“Call me if you need to talk about…anything. I might not be able to answer. But I promise, if you leave a message, I’ll listen to it and call you back when I can.”
Then she backed out of his driveway as quickly as she could.
AS SHE SPED off down the street, everything male inside of him wanted to chase after her. Something about her parting statement sounded…off. And not Tessa-off. Just, off. Brian couldn’t put his finger on it. Could be that he was just grouchy over her joke about not making plans. The reminder of her ‘fling rules’ had him growling. She couldn’t possibly think this was still just a fling between them could she?
Because it sure as hell was more for him.
Spreading out all the materials on the coffee table, he picked up the article she’d mentioned first. He only had a few minutes before Skylar got home from the movies so he started skimming the parts Tessa had highlighted for him just so he could have some food for thought while he got di
nner ready.
History: Subject was thirteen years old when her gene test came back positive. Soon after, her life began spiraling out of control. With little regard for her safety, Subject began a self-destructive stretch that lasted until high school.
Shit. This was exactly what he was worried about. This is why he hated case studies. He pictured Skylar going through every described case and it about killed him.
Subject had been forced by her mother to take the gene test against her wishes. Subject was not given the proper time, information, or support to prepare or process after the fact. When the results came back, Subject noted: “While I felt like I’d just gotten a death sentence, my mother treated it like she’d been sentenced to life without parole because she’d have to take care of me.”
Jesus Christ, the mother sounded like monster.
Subject asserted that the absence of preparation, support, and choice was the determining factor that resulted in as much resentment of the test itself, which was compounded by the results. The lack of choice made Subject feel more helpless over her situation, and betrayed by those whose support the gene test requires.
Put in the same situation, he’d probably feel the same way.
Subject’s downward spiral came to an end when she hit what she deemed to be rock bottom. From there, she identified two factors that helped turn her life around: 1) the return of control over her decisions, short term goals, and future, and 2) her positive relationships with other individuals living with HD.
That was promising. Hence all of Tessa’s pamphlets and programs.
Longitudinal follow-up: Subject is now living a productive life. In her experience now as an adult who underwent predictive testing as an early teen, Subject has found one major area where the knowledge of her gene test result has seemed irreversibly detrimental: in her relationships with a significant other.
Brian’s eyes narrowed on that last tidbit and a sudden feeling of unease hit him.
Had she not been aware of her having the HD gene, Subject feels that she would be able to love and receive love more freely in a relationship. But because she is aware, Subject is unwilling to put a significant other through what her mother treated as “a life sentence without parole.”
Fear and dread gripped him in the throat as he flipped through the pages to the final highlighted section, somehow knowing it held something he didn’t want to know, couldn’t bear to see in black and white.
It wasn’t a page from the article. It was an anonymity waiver.
Subject Name: Tessa Daniels
A giant, dark wave of cruel, harsh reality slammed into him.
Tessa had the HD gene.
Why the thought had never even occurred to him is beyond him. He knew the data. The chances of inheriting the HD gene were always exactly 50-50. For some reason, with Willow having had the juvenile form, he hadn’t even thought twice about Tessa’s having the gene as well. But she did have it. And as was the case for every person with the gene, that meant she’d develop the disease at some point in her life.
The air in his lungs burned suddenly and he felt like someone was reaching in and ripping out his heart.
Again.
But more than that, he felt his heart breaking for Tessa. For everything she’d gone through, everything she was going through.
Everything she’d be going through in the future.
Picking up his phone, he dialed her number and got her voicemail.
Listening to her sweet, cheerful voice, he was at a loss for words. What could he say to the woman who thought his loving her would be a life sentence without parole for him?
With no answer to that question, he hung up before the beep.
CHAPTER TEN
“BRIAN, CAN YOU STAY and color with me?”
Tessa came to a jarring halt out in the hallway just outside of Jilly’s room, the mere mention of Brian’s name sending her insides into an emotional tailspin.
She’d gotten back from her trip almost a week ago, and she hadn’t been able to return Brian’s call yet. What could she say to the man who now knew that her future would be an instant replay of the nightmares in his past?
To be honest, she’d almost called him back during the trip after hearing his message. About a thousand times. But it had taken only a single glance at Connor’s face to know that he’d talked to Brian. One single glance to know just what he thought about his brother going through that nightmare again.
She couldn’t blame him.
So here she was, hiding, and seemingly unable to drag herself away from the chance to see Brian. When he turned to smile his adoring, thousand-watt smile at Jilly, Tessa felt the air in her lungs vanish. And just like that, the longstanding fortress she’d managed to resurrect around her heart over the past week and a half crumbled.
Tessa had first brought Brian to meet Jilly a few weeks back. And of course, Jilly had him wrapped around her little finger within the first five minutes.
Impressively, Jilly had sweet-talked him into volunteering to build a birdhouse for her by minute six. A quick peek at the far window revealed that he had in fact finished the birdhouse for Jilly. And it was beautiful.
He was such a good man.
Her head resting against the door, her heart scattered all over the place, Tessa just stood there in the hall and watched Brian grab the crayon bucket and sit with Jilly.
“So what are we going to color today, Angel-Face?”
“I got a new coloring book last week. See?”
“Flintstones?” he chuckled, his eyes softening. “Let me guess, Tessa got this one for you.”
Tessa nearly fell apart right then and there. Those teal blue eyes of his had looked as filled with pain as hers did when she looked in the mirror lately.
Jilly beamed. “We watched it on TV once. It’s so funny! The people drive their cars with their feet and they have birds in their cameras.” She shook her head to herself with a giggling sigh as she started coloring in Pebbles.
Brian’s voice shifted into what Tessa liked to call his ‘super dad mode’ as he picked up a purple crayon to start coloring in Dino. “Say, do you think this Dino dinosaur and Barney are related? They’re both purple. Maybe they’re cousins or something.”
Tessa bit her lip as she listened in. Once, she’d watched Brian incite the most outlandish conversation with his colleague’s three-year old son in the supermarket check-out line. It had gone on for at least five minutes.
“Dino and Barney can’t be cousins!” Jilly gaped at him as if he were the silliest person alive. “Dino is from the olden days. Barney is from right now times.”
He’d smothered a smile when she’d said ‘olden days,’ and was continuing on with impressively straight-faced stamina, “Get out! We still have dinosaurs in right now times? Are they all purple like Barney? Where do they live?”
Jilly splayed both her hands over her eyes and fell back against the bed dramatically. “Oh my goodness, you make me tired.”
Brian tipped his head back and chortled over that one as he leaned over and pulled her into a gentle hug. “You are just the cutest thing in the world, Angel-face.”
The entire verbal volleyball match was the tipping point for Tessa. She had to get out of there. Her heart couldn’t take much more.
Just as she turned to leave, however, Jilly’s gaze swung over in her direction.
“Tessa! Look Brian, Tessa’s here!”
Brian’s head shot up and he stared at her for a raw second as if he just couldn’t help it. Then he came over quickly to explain, “I was just dropping off Jilly’s birdhouse.” He lowered his voice. “I wasn’t trying to corner you or anything, I swear. I know you said you’d call me back when you’re ready to talk…”
The trailing pause killed her. Because honestly, she didn’t think she’d ever be ready.
“I’ll go,” he said softly.
Tessa backed up a step. “No, no. You stay. I can go.”
“Why can’t you both stay?�
� asked Jilly, brows furrowed with all the candidness of a six-year old.
Why indeed.
“I wanted to show you guys what I did in art class this week.”
Brian looked over at Tessa with a silent ‘it’s your call.’
“Sure, Jilly-bean,” replied Tessa. “Of course we’ll both stay and look at what you made.”
“Yaaay!”
Not long after, the tension had dissipated considerably, thanks largely to Jilly’s hilarious works of art, which Tessa was pinning up for her on the ‘masterpiece clothes line’ while Brian and Jilly were busy discussing the finer aspects of art like a pair of hardcore aficionados.
“You kidding?” he was telling Jilly, “You can do way more things with watercolor painting than finger painting.”
“Nuh-uh!”
“Uh-huh,” he mimicked with a grin. “Skylar and I used to do all sorts of cool watercolor projects. Hell, she still—”
Jilly gasped. “You cursed!”
Brian froze and shot Tessa a stricken look.
Even though humor was the last thing she feeling, Tessa managed to chuckle. “Jilly’s yanking your chain. Her mom swears worse than a gold-toothed rapper”