Saturday, January 26, 2013
Fairness, Cystic Fibrosis, and Cerebral Palsy
So, Jake’s been sick a lot this week. It’s been both bad and not so bad, depending on the day. He’s been fighting with diarrhea several days, and even though his stools have been pretty solid today, he’s still had a lot of GI wooziness.
With Jake having Cystic Fibrosis, we have to take all of this very seriously, just like we do when he gets bugs in his lungs. It can be pretty bad for him if he catches something fierce, even in his guts.
So, he’s staying home from church tomorrow. This is kinda frustrating, because it’s a big deal for his older brother. Brendon gets to speak in church. In Mormon churches, members of the congregations preach the “sermons” each sunday, though we call it “giving a talk”. Often they’ll ask the youth of the congregation to do a short one before the adults speak. It’s really good for them, and it’s a big deal for a teenager to do.
But, Jake and one of us of the parents will have to miss it. It turns out that I get to be the lucky one to go, because I sing in the choir, and we’re also performing.
It’s kinda tough to split up the family activities for a day, but that’s what we’ve got to do. Fortunately, Brendon understands, and hasn’t complained too much. He does, however, sometimes gripe about other aspects of the inherent unfairness of Jacob’s condition. Jake misses a lot of school, and Brendon would sure like to do that. Jake, because of his Cerebral Palsy, can’t do any household chores, so more of that falls to Brendon.
We try, as parents, to find some kind of balance, for both of them. But, really, there isn’t a balance. It just IS, and we all have to deal with it in our own way.