Monday, September 30, 2013

Common

Ben's newest thing is finding body parts. "Where's Ben's nose?" is a common phrase around here. Now, though, he has to find Sisters nose, Mama's nose, Daddy's nose, Uncle Craig's nose... you get the idea. I was watching him do this the other day; just one of those sit back and watch moments. It struck me like this: Ben has no idea he's different. The way he sees it, everybody's got a nose. We've all got two ears, two eyes and a belly button. Even though he can't tell me what he thinks yet, I can see it through that jolly, unforgettable grin. "We're all the same. Sweet!"


Sometimes I get lost in the idea that my kids are going to be in the different category as they grow up, and I get anxious about how I'm going to explain that to them someday. It might sound silly, but I think I'll approach it like I do everything else: find the good. "You're a little different than your friends, but look... Kate has two ears, two eyes and a belly button. Just. Like. You."



Heavens to Betsy - we're all made in His likeness. There's a super cool common thread right there. Just like Happy and Good are always there, Common is there, too. Sometimes Common stands out like a sore thumb (literally); sometimes he hides behind almond eyes. But Common? Oh, he's there.


We're more alike than different. Ben gets it. Do you?

Wednesday, September 18, 2013

Village

I vented to a friend the other day. "The hardest part," I told her, "is knowing there's no end in sight." When Micah was in the sand box, we knew when it would end. For the most part, we could even put a date on it. I knew exactly when the hard part would end and life could begin again. Even with Ben's Down syndrome, I remember a distinct time period when I realized my son was perfect just the way he was and life began again.
Alexis is so very different. I'll worry her whole life. Sure, some days are going to be easier than others, but as a whole... I'll worry. About her getting sick; about not getting to keep her. It's gut wrenching to think about the future. So I don't.


I want to clear something up, too. People keep asking me what I need and how they can help. While I so appreciate the gesture, the honest answer is... I have no idea. I don't know what I need. I don't know how to ask for help. I'm tired and I'm overwhelmed and I'm hurting. And I have no idea how to tell you to help me. That doesn't mean you should stop asking. We need a village. If something crosses your mind that you think would help... ask me if it would. I'm trying really hard to not carry all these things alone and to take advantage of "Jesus in flesh and blood." The problem usually is that I don't want to feel like a burden to somebody else. I know what you're going to say; "You're not a burden." And I know that... in my head. It's a humbling experience being the one that needs help instead of the one that helps. I'm learning. Slowly.

Every once in a while, just remind me that you're still there. That's what I need the most.


In Benjamin news...

Dude SAID "more!" Clear as day; I wish I got it on film. We were eating dinner with Uncle Craig and he wanted more of whatever was on Daddy's plate. And there it was... "Mooore." He hasn't said it since, but it was a supremely awesome moment.
To answer your question... No, he's not talking yet. He's working hard to communicate using signs and pointing at things. That's the first step. We're really proud of him and how far he's come already. We have a phenomenal speech therapist who has been an amazing example of patience and has taught us a lot over the last year. One day he'll be able to tell me how much fun he's having in Puggles.

Happy Hump Day.

 

Thursday, September 5, 2013

PB&J

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.