CF makes you a worry wart. It just does. When the blood test comes back positive, the first thing you do is Google "Cystic Fibrosis" 'cause, let's be honest, it's not one of those things anybody knows much about. "9 times out of 10, the initial blood test is wrong" is what it says. So you look at symptoms. "Salty tasting sweat," "minimal weight gain," "greasy poop." You feel like an idiot licking your baby to see if she tastes like the ocean and you try to compare diapers to figure out what exactly "greasy" means. You worry about what you're going to do if the next test confirms CF. You worry about what you're going to do if it doesn't. When the sweat test confirms your worst nightmare, you worry about... your worst nightmare. You check on her every 5 seconds to make sure she's still breathing; you watch her like a hawk and panic with every cry.
That's my reality some days.
But then some days, you forget. You don't think about the chronic side of CF. You just watch her grin and snuggle longer than usual. You take extra pictures and daydream about the future. You write an outline for a book and you thank God for the little things.
Anybody can say, "live like you were dying." I thought I knew what that meant. Micah and I have both survived things we shouldn't have. Our lives have been turned upside down in more ways than we can count. I thought I had figured out how to live like there's no tomorrow. I was wrong. Having a child with a chronic disease? That makes you live differently. Every. Single. Day.
Maybe that's a bad thing. But maybe it's not.
Maybe that's how we're supposed to live this life anyway. We're not promised tomorrow. We're not even promised this afternoon. So today... I'll snuggle a little longer, take a few extra pictures, thank Jesus for the little things and make a mean PB&J. 'Cause my Jesus and my family?
That's all that matters.