(no subject)

[thomas_kemp]

WHO: Thomas and Jamie Kemp
WHAT: Rapidly taking over our hearts and heads A serious conversation
WHEN: ...what the fuck day is it? Tuesday?
WHERE: Hospital, then mostly their place
WARNINGS: Sickness and stuff



With the day of testing over, Thomas headed out into the waiting room to fetch his son. Jamie could be with him for some of it, but he had to sit out while they stuck Thomas into a huge tube and x-rayed his head.

He wasn't finished with the tests, but today had come with some interesting news. He had also been counselled on what to look for and more about what the disease meant and the more he learned, the more he knew he really needed to have a conversation with Jamie about the future. It wasn't going to be pleasant at all, and he hated that it was necessary, but there was no getting around it.

Thomas had worked so hard to preserve Jamie's childhood and make it a happy one despite their circumstances. And now it looked like the poor boy might just have to mature well before his time any way. Sure he was eighteen, but he was about to go off to college and that should mean parties and late night study sessions and dating and more parties. What it shouldn't mean was taking care of his father in the event that he degenerated rapidly. But it was in the cards now.

Like father, like son.

Thomas entered the waiting room, his jacket slung over his shoulder. He smiled as best he could and he went to go collapse into the chair beside Jamie, just for a moment. "Your father is currently radioactive," he said lightly. "With dyed, lizard blood. ...because it looked green, not...not because they actually injected me with lizard blood." He was rambling.

Comments

[thomas_kemp]

"It's great," he said with a smile. "It's not for sure though, since I think she said 30% of cases don't correspond to the amount of...thingys. But...it could mean I'll stick around longer." He really hoped so. He had been assuming his symptoms would start in the next few years if they hadn't already. Some people with fewer repeated CAGs remained symptomless their entire lives because they died before the disease had a chance to activate. It was a glimmer of hope. "Of course I haven't been declared symptomless yet, but the brain scan was all positive."

Thomas sighed and he took another bite of food. "All that being said...I still have to think about the future. I have an appointment to go in next week to erm...write up a will."

[flare-star.insanejournal.com]

"So far, all of that sounds like pretty good news," Jamie said, taking one of the crab rangoons. "Because yes, Dad sticking around longer is what we're all hoping for."

That sentence made him feel cold all over, and he had to work a little to swallow his mouthful. "Already?" he asked. "I mean, I know it's a good idea to have one, I just...hate what they mean, you know?"

[thomas_kemp]

"It's just to have it done with," he said, trying to soothe Jamie. "I also need to make arrangements for- There's not getting around it. Regardless of when it happens, eventually the symptoms will start and the doctors have been informing me what to look out for. Changes in mood or personality or coordination, which let's be honest, isn't all that great to begin with." He tried to smile gently.

"They also said, uhm...sometimes after the symptoms progress, people can get...aggressive. They get confused and they lash out. And I need to say now while I'm still me, that I would never, ever hurt you on purpose." He had never even spanked Jamie, opting instead for time outs when discipline had been necessary. "And if I ever do, I'm so sorry. That- The idea I might is kind of the scariest thing to me right now."

[flare-star.insanejournal.com]

Jamie swallowed hard again. "That means I'll have to cancel your Julliard audition," he said, trying for levity but knowing he wasn't doing so well. "What, uhm...what did they tell you you needed to be on the lookout for?"

"I know you wouldn't," Jamie said quietly. "I know that. I honestly can't picture you as aggressive, it's hard to even think it."

[thomas_kemp]

"I did so want to be a prima ballerina," he said, smiling gently at his son. He was trying so hard, bless him. "They said I might get confused. Small things at first like getting names wrong or...putting shoes in the oven, things like that. I hope I don't lash out. It's upsetting to think about it."

He took a breath and continued. There was so much more still to cover. "I also need to choose a medical proxy who can make decision. My mother said she would be glad to do it, but she might have her hands full with my father and to be honest-" He sighed again, "Jamie, I feel like you should be the one to decide when I can't any more. You're the most important person in my life. It's a big responsibility though, and you don't have to say yes. You can think about it for a little while if you need to."

[flare-star.insanejournal.com]

"I'd even gotten you the pointe shoes, and everything," Jamie said around an egg roll. He really was still paying attention, but he was still hungry, too. "So, little things that get progressively worse?" he asked. "And I hope you don't either."

Jamie felt touched that his father would ask him to take on such a huge part of his medical care, but a bit scared, too. "No, Dad, I can do it," he said, after the silence had stretched between them. "I mean, as long as the doctors can explain to me what needs to be done, and stuff like that."

[thomas_kemp]

"Yes, exactly. Little things. If you notice anything, we can get it checked out."

Thomas took another bite of his food and then he smiled at Jamie. "Jamie...thank you," he said, with feeling. "They'll explain and you will be the only one who can make decisions. Because- Because there will be a point where I won't be able to take care of myself. And I'm really sorry for that. I don't want to be a burden."

[flare-star.insanejournal.com]

Jamie nodded. "OK. I'll keep an eye out for anything out of the ordinary."

It was a lot of responsibility, and Jamie felt his throat go a little dry. But hopefully, by the time it became necessary for him to actually make decisions, he'd be older and (hopefully) a bit wiser. "Of course, Dad," he said. "But you're not a burden, OK? We'll figure this out."

[thomas_kemp]

"Well...you might think differently when-" He hardly wanted to talk about feeding and bathing and all the rest of it. "I also wanted to say...look, I don't know when this is all going to happen, but you're going to have your own life. And I hardly want you to put that aside for me. And when the time comes and I can't take care of myself, I don't want you to feel guilty for hiring a nurse or putting me in a nursing home." He needed Jamie to know now that he understood. "And both Kat and Victor have already said if money is an issue, they are willing to help."

[flare-star.insanejournal.com]

"Dad, no," Jamie said. "You're part of my life, OK? I'm not setting aside anything to help take care of you. Sure, maybe there'll come a time where I have to hire a nurse because I can't be here all the time, or you need shots and I can't legally give them to you, or something. But you are not a burden, and that's also way down the road. I'm not just going to disappear and leave you with some nurse or in some home, OK? That's not going to happen."

[thomas_kemp]

"James..." Thomas didn't know what to say, so he just moved over to pull Jamie into a hug. "Do you know how proud I am of you? You're just...the best thing I have ever done with my life." His son was eighteen years old and accepting the responsibility for someone else. He knew a little bit about that. And hopefully it would be years in the future, but there was no certainty. It made Thomas feel much safer, though he did worry for Jamie's sake.