Thursday, May 19, 2016

Gifts in unconventional packaging

Parenting a medically fragile child bites.
I mean it really sucks in a million different ways.
We live a pretty "typical" life, but even so...

I could list all the ways it sucks for you.
The moment we were diagnosed and our entire world shifted on its axis. The hospitalizations. The surgeries (duh). The medications with side effects that would keep you up at night thinking about. The things you're a witness to. The pain you watch your child go through. The pain you participate in, holding your child down for repeated blood draws and other procedures. The brave children you pass in the hallways, in the elevators. The ones you know and love personally who earn their angel wings far too soon. 

But that's really just the tip of the iceberg.
Everything underneath that.
That's where the scary stuff really starts. 
I could try to explain it to you.

But the thing is, if you haven't been there, you wouldn't understand.
You try and we LOVE you for that effort. 
Please, please keep trying. 
We need you to keep trying.

But unless you have been there, you cannot begin to understand how sitting in a hospital bed next to a truly, truly sick child changes you, your mind, your outlook on life, how it hits your soul. How it literally crushes your heart and forever alters it. 
What it's like to watch your child suffer. And to suffer in a way that you could never make better no matter how much you tried.
What it's like to wonder whether your child will get to grow up, whether you're parenting for the here and now or for the future. 
What it's like to look at their siblings and wonder how this journey is changing them now, how it will change them in the future. 

Every parent worries. 
But the thing is...but when you have a medically fragile child, they're not just crazy overreacting typical parent worries. We fear what we've already seen and know can happen. It's literally like holding a ticking time bomb. One that could go off at any moment. So you hold on for dear life. And pray for more days.

This past week has been tough for us, with conversations about Bodie we weren't quite ready to have. (He's fine cardiac wise, but his rhythm stuff is giving us a run for our money.) 
Lots of feelings coming up. 
And not the good kind. 

So I've been in a funk the past few days, just processing it all. 
Hating CHD. 
Wishing with every ounce of my being that my sweet, silly boy had been born with a whole functioning heart. Just wishing for the hundredth (millionth?) time that I could take it away from him.

And then today, as we were riding home from school and stopped at a stoplight, I looked back to see this. 
And I stopped, struck by his smile. 
And I realized how lucky I am. 
I get to see this smile on a regular basis. A smile that literally lights up his entire being. And reminds me how uniquely amazing God made him. 
You know what that smile was for? Because I had gotten him Reeses peanut butter cups as a snack.
I mean. 
Reeses peanut butter cups are pretty amazing, but even be this excited? 

And you know what this smile a few weeks ago was for? 
Because he found a ladybug. 
A freaking ladybug.

What an incredible approach to life. 
Couldn't we all use a little bit of that?
Man, the world is a better place because this kid is in it.

I know his joy is not larger than life because of his heart, but the two go hand in hand. We get the beauty in the imperfect package. 
In his imperfect heart, our family has experienced perfect joy.
Because of his trials, we have rejoiced at quiet, happy moments.
Because of his perfectly imperfect future (but aren't ours all?), we have been forced into the here and now.

Here's the thing. A medically fragile child pulls you off autopilot. They bring you into the land of the HERE and the NOW. The land of childhood, of laughter and pillow fights, of snuggling in bed and extra stories. Of taking a little extra time.  Of rejoicing over Reeses Peanut Butter cups. 

So, yeah, this medically fragile journey thing sucks times infinity, but the beauty and joy it brings is also times infinity. 

What a gift, even if wrapped in unconventional packaging.