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Being a PKD Parent and Spouse

“It’s trying to have them live as normal life as possible, and as healthy a life as possible.”

Sean Williams


As a caregiver for both Kate and Owen with both having polycystic kidneys, it’s trying to have them live as normal life as possible, and as healthy a life as possible and trying to be mindful that one is a 7-year-old boy who’s growing and wants to have experiences all on his own. 

I think the most challenging part of PKD for Owen is sort of being a parent to a child with PKD is balancing out him having as normal a childhood as possible, but also pushing water on him as often as possible and making sure he’s taking his medicine and having those checkups, educating him so that he’s aware of sort of why we’re doing things.

I think day-to-day life for us is pretty simple in things. He takes his medicine, carry along that way.  We try to be mindful on salt content, trying to really encourage him to drink water.  I’m always reminding Kate that you need to drink more water than I do, and she’s a teacher.  So, that’s a challenge.  Her schedule is a little bit different than mine.

I could tell, we were just at the beach the other day, and Owen had a small little accident and fell out of the little tree he was climbing.  The first reaction that I had was, “Did he hit his kidneys?”  It’s a thing not many other parents probably think about as they’re going about day-to-day life, but your first thought is, “Did he hit something hard, or did he just land on his back?” which I mean I think kids fall out of trees all the time.  It wasn’t up high, thankfully, but it was enough.  Enough to scare you.

I think with childhood PKD one of the other things that we think about is—and we’ve talked, Kate and I have talked about it a lot is sports that Owen can play.  Unfortunately for him, he’s not going to be a football player.  We think, I grew up in a baseball family, can he do baseball, what happens if he gets hit by a pitch in the kidney.  It wouldn’t necessarily be a huge impact on his PKD, but if it hit a cyst and it ruptured a cyst, it could be very painful for him, a lot more than it would be just anybody else who gets hit by a pitch.

I’m thinking more as he gets older, and if he was to play in high school.  So, I think some of the questions is how much do you expose them to when they’re little that has an impact to them.  If he became a huge fan of baseball, but then all of the sudden I had to turn a corner and say, “Actually bud, you can't play anymore, because your competition is getting too tough,” or something like that’d be tough, but we’re fortunate that some of the sports Owen’s into. He likes hitting golf balls.  He thinks that’s a lot of fun.  He’s a huge rock climbing nut, a climbing nut obviously from the tree story.

That he is a natural at it and really enjoys it.  So, we’re fortunate that things that he likes are things that he doesn’t have to sort of shy away from or that I’ll have to dissuade him from.

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