The conclusion of my interview with my stepson and Shaky's son, Bryan:
Q: What advice do you have to give Young Onset PWP about raising children while dealing with PD?
Have a great spouse. Haha! But seriously, Mary SOOOO much. As for PWP, do everything you can with them, as often as possible. That ability is going to come to a slow, grinding, halt. I promise. One day you won't be able to pick them up and throw them in the air. One day you won't be able to spend the night outside in a tent, camping in the backyard. One day you won't be able to keep up with them when they take off running across the yard. One day...
Q: What advice would you give to other kids who are the same age as Joe?
Be patient. Sounds simple enough, but I know for a fact, it's not. Patience is something that, often times, actually takes cognitive intent to exhibit. Do what you can to help, learn what you can about the disease, and cherish every moment you have. Life goes quickly enough as it is, when there's a degenerative disease involved, that timeline is shortened.
Q: If you were to write a letter to your little sisters about your father, PD, and all that it entails, what would you say?
That would probably be a rather long letter, one that I would actually like to write, and may one day in the near future, but would take a TON of thought and time to write, and I'm not sure I want to attempt it now. Sorry.
Q: What do you think a parent needs to communicate to their child regarding PD? What is it that you think kids need and/or want to know?
Above all else, they need to realize that Daddy's not gonna be able to do certain things with them like maybe he used to. For little ones, especially if he used to be able to, and now can't, that's a pretty big deal. They won't understand it. They won't get why Daddy's tired, or can't do this, or that. When you're young, going and doing, those are the things that matter.
Q: Coming from a grown child's perspective, what is the most challenging or difficult aspect about having a parent with PD?
That's tough, but personally, I think the hardest thing is KNOWING. It's not like a freak accident, or a fatal disease that comes in quickly, runs it's course, and is done. It's here. It's here to stay. For the duration. However long that may be. It's here, and you know it. You know things will only get worse, but there's absolutely nothing you can do to change it. Make it better. Slow it down. Stop it. It's gonna happen, and knowing just makes it worse, to me at least.
Q: Do you ever feel burdened or obligated to help your dad?
Burdened? Obligated? No. Maybe. I don't know. I'm not sure how to read this, but I'm reading negativity into it. If that's the case, no. I don't. I know he needs my help with things. I try to swing by when he's got something he needs a hand with. I know sometimes I don't get by as quickly as I feel like I should, but there's no one that can change that but me...
Q: Do you ever have the feeling that you should do more? If so, how do you handle those feelings?
Sometimes. Life is busy, unfortunately. And sometimes, "life" takes precedence. Not that I'm saying that makes it ok, because it definitely doesn't. I try to help when I'm needed, but I've never been one to just think about something that needs doing, without being asked. That's one thing Mom used to, and still does, mention from time to time. If I'm not asked to do it, it usually won't get done. It's not because I don't want to do, or am not willing. It's more so that I just don't realize it needs to be done...
Q: Do you ever think in terms of 'worst possible scenario?' and if so, what would that be?
No. I don't allow myself to go there. I take it all a day at a time, and enjoy each moment for what it is. Another precious moment. I've only recently learned to do this with life, but it's made all the difference.
Q: Do you see yourself in a caregivers position at some point in the future?
I'm sure I'll end up helping out, I guess how much is to be determined, and will depend on a lot of variables.
Q: If anything were to happen to me, Shaky would require help raising your younger siblings. How does that make you feel?
I love them almost like they're my own. Would it be tough? I'm sure it would, but we'd make it work. No question.
Thank you so much, Bryan, for an amazingly honest and insightful interview!