Thursday, February 17, 2022

Shiny, Happy Birthdays

This brave resilient kiddo turned 12 yesterday.
12 years of hopes and dreams and defying expectations. 
We will never stop being amazed at the miracle that is this kid's life. 
We love him more than he will ever know. 

But here's the thing no one tells you about raising a medically fragile child (or maybe they did and I missed that page in the "How to properly raise a child with a rare lifelong disease so that they don't grow up to be a spoiled brat incapable of adult living if they actually get to grow up" handbook)...
milestones are complicated.

Birthdays are a big deal. 
They're a big deal even with healthy kiddos, and even more so with medically fragile kids. They're a reason to celebrate all of the milestones of the past year. And in the case of a medically fragile kiddo, especially one you never dared to hope to dream would see so many birthdays, it's a big big deal. A million reasons to celebrate, to be sure.

But parenting a medically fragile child is a different sort of experience. It requires a lot of very intentional compartmentalizing. It requires taking the biggest fears and concerns, thanking God for taking them, wrapping them up in a box with a pretty bow and shoving that box verrrrrrry far back on the highest closet shelf. And then it requires pretending that box does not exist. Because if you really lived with those fears and uncertainties on a daily basis, it would be paralyzing. It would rob every day of its enjoyment. So you keep that box tightly closed and locked away and try your best to ignore it and live in the here and now.

But when a birthday (or any milestone, for that matter) comes around, you are forced to bring that box down. Because to fully appreciate the beauty of that birthday, the miracle of it, you have to acknowledge what makes it such a miracle. 

And so you hold your breath and you peak into the box, and you see inside that box the worst of your fears. Because that box is swirling with emotions - the PTSD from all the things that did happen, the survivor's guilt for all of the things that could have happened but for reasons you don't understand thankfully didn't, and anticipatory grief for the things that are still to come. It's just...a lot. And, if you're like me, and you're a Cancer, well, you like to hold onto feelings like they're winning lottery tickets. And you're just one hot mess.

Because there's no way to appreciate him turning 12 years old without remembering sending him into open heart surgery at 5 days old, at 2 months old, at 7 months old, at 3 years old, or at 6 years old, each time uncertain whether he'd come back to us...or without remembering the 10 year old roommate he had as a newborn, who suddenly and unexpectedly lost his battle with CHD...or without remembering conversations with doctors about how he likely wouldn't make it to his next surgery, and if he did, he likely wouldn't be strong enough to survive...or ...or...or...the list goes on and on. 

And so, you often find yourself a bit melancholy leading up to birthdays and your eyes filling with tears every time you see your amazing warrior of a son blowing out birthday candles. Not because you don't love him or you're not excited. Because you do and you are. But because there aren't enough words to describe all of the emotions. It's just too much. There's just no space big enough to hold it all. So it stays in the pretty box...most of the time at least. 

Like I said, it's complicated.

So if you see me teary-eyed at a birthday party, or a milestone, give me some grace. There's a lot of complicated stuff going on. 

But know this - we love this kid. 

He's an incredible, funny and resilient human being. One who is going to move mountains. If he can just get out of his own way. ;-) He's a pretty great kid. When he realizes it too, the world will never be the same.

We love you Bodie. Happy 12th Birthday. Here's to many many MANY more!