Love, Laughter, and Happily Ever Afters Collection (38 page)

When did she get here?

“Skylar texted me while you were on your run,” she explained, at his questioning look. “I got here as quickly as I could and I let myself in. You left the front door ajar.”

He had?

Everything had been such a blur. Still was. Skylar had been talking for nearly ten minutes now and he still didn’t have a clue how to help her.

Tessa sat down on the railing opposite of them and said quietly, “Skylar, it’s not that they don’t want to hear you, it’s that they can’t understand what you’re going through. You need to explain it to your doctors, to your father. I know you think they should get it because they already saw your mom go through it, but I guarantee you, they don’t.” Her eyes landed on his as she continued, “So just start from what you feel like when you wake up every day. Describe it if you can’t explain it. And go from there.”

Brian watched in horror as tears filled Skylar’s eyes again. How had he not known his little girl was going through so much agony? “I’m listening, honey. And I promise I’ll hear you. Just…talk to me, please.”

“It’s not every morning,” Skylar whispered as she looked up at Tessa, almost as if reaching for a lifeline before repeating, “It’s not every morning, but some mornings I wake up and I wonder if today’s going to be the day that I’ll know for sure if I have HD or not. And for the five or ten minutes that I sit there and think about it, I feel…almost happy. Like I can finally breathe again.” Her voice dropped a bitter note lower. “But then after that one short breath, it’s like I’m drowning all over again. I go to school and see my friends laughing and talking about stuff like what awesome things they want to do when they grow up… Normal teen stuff. I see them sitting there not worrying about anything really—something I never get to do. And when I see that, I get so jealous and sad and angry. And I just
can’t breathe
.”

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 dunno, 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 had gone 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 out 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 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 on to, 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 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 a 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 before he could reply and started the engine, rolling down the window for one final goodbye as she shifted the car into reverse. “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 HE WATCHED HER speed off down his street, Brian felt everything male inside of him clamoring to chase after her. Something about her parting statement sounded…off. And not Tessa-off. Just off in general. 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 dinner 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 a 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 is vital during the gene testing.

Put in the same situation, he’d undoubtedly 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 was beyond him. He knew the data. The chances of inheriting the HD gene were always exactly fifty-fifty. For some reason, with Willow having had the juvenile form, he hadn’t even thought twice about Tessa 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.