There's nothing smart about taking a kid with epilepsy to see fireworks.
So we do it.
We stay up hours past her bedtime and explode lights in her face, like participants in a demented researcher's clinical study. We load her up with sugar, too, going for broke.
It's not smart. We're not in this for smart. She can be smart when she has her own kids.
But I doubt she will.
When the show starts, when the classic rock cover band stops asking us to c'mon c'mon c'mon c'mon and touch them baby, when the explosions fill the sky, I watch her face. I look for eye rolls, for locked jaws. For tremors.
She watches the sky.
I watch her.
Her face is blue. Red. White. Sparkling.
When the big ones launch, she holds her breath. She holds it until the blast lights her face. Twice she reaches up, fluttering her fingers between her and the sparks.
We're close enough to the fireworks to smell them.
She never looks over at me. I rarely look away from her.
I've seen fireworks before.
I've never seen them like this before.
The finale comes, wave after wave of sound and light. She rocks up on her knees. There's no way this can be seen with mere sitting. It keeps going, flashing and pounding, blasts compressing the air between us and the sky. I watch her face.
She claps. Her eyes stay forward. The tremors never come.
There's nothing smart about taking a kid with epilepsy to see fireworks. There won't be next year either. But we're not in this for smart.
You have quite the knack for making me laugh so hard I hurt myself one moment, and making me blinkblinkblinkityblink the next to try and see the stinkin' screen.
Loved this one.
Posted by: Kritter Krit | July 05, 2009 at 09:23 PM
I love this post. Found it via stumbleupon. Good for you and fantastic for your daughter.
Posted by: amy | July 05, 2009 at 09:29 PM
Man you are good at making me cry, Brian...
Beautiful post. I am SO HAPPY for you guys.
Posted by: D2 | July 05, 2009 at 10:49 PM
What a great post. She's lucky to have you.
Posted by: Kirsten | July 05, 2009 at 11:55 PM
Beautiful, beautiful, beautiful.
Posted by: Julia O'C | July 06, 2009 at 08:35 AM
I didn't watch any fireworks this year, only a couple home-grown ones across our lake on Saturday night...
Thanks for my holiday fireworks!
Your description of Kathryn's joy and excitement - well, I feel like I was there!
Posted by: Krys | July 06, 2009 at 09:16 AM
wow, great post!
Posted by: Jamie | July 06, 2009 at 10:04 AM
Looky Daddy, another brilliant example of why I keep reading your blog. You and The Mom are amazing parents and Kathryn is so very lucky to have the both of you as parents. You are letting her live and experience life to the fullest, Bravo!
Posted by: Angela | July 06, 2009 at 10:59 AM
Nope, you're not in this for smart. You're in it for real. For LIFE, for love, for the preservation of childhood and sanity and normalcy. And maybe you didn't know that you're in it for the crack cocaine which is the pure, unadulterated joy on that precious face, reflected in sparkly subdued hues of pyrotechnics glow.
It was the 4th of July, and Kathryn was a gleeful child...
*Because* she has epilepsy, YOU took the time to watch *her* when you otherwise might have been watching the sky. And the joy you saw writ large upon that tiny face might otherwise have gone unseen by you (except in the stolen glance). The memories of those looks on her face, and her sparkle fingers ... you'll have those, forever. Maybe that's one of the gifts of this crazy disease. (Take 'em where they come, they're few...)
Posted by: Viaggiatore | July 06, 2009 at 11:20 AM
Now, that is something worth celebrating.
P.S. I'll be sending my birthday boy to you next year for that parade. Don't thank me...I'm a giver.
Posted by: Vikki | July 06, 2009 at 11:23 AM
You're in it for moments like those ones. Good for you guys, for going for broke, for living in the moment. Life is meant to be lived!
Posted by: Katie in MA | July 06, 2009 at 01:25 PM
sigh.
Posted by: stef | July 06, 2009 at 01:28 PM
Hope you were dumb enough to buy her a funnel cake too. :)
Posted by: Deanna | July 06, 2009 at 01:58 PM
Beautiful.
Posted by: Nicole | July 06, 2009 at 02:09 PM
Very poignant for those of us with kids with epilepsy.
There are so many compromises to make between what might be best to control the condition, and what just feels right for having a full life.
The physicians will say, for example that 100% control of seizures is the goal, but if we use the medication that doesn't control them 100% he is so much more alive to life. Are we doing permanent damage? That's what it's like to live with epilepsy choices.
A little more risk (and the nature of the risk is rather vague) but you get a little more life (and the value of having a childhood not numbed and lived fully seems rather concrete)...
Who can say what is best?
Posted by: Mike | July 06, 2009 at 03:50 PM
She will never forget those times and neither will you. Good job being a great dad.
And I'll add my thanks to Joey the pyrotechnician as well - I've loved fireworks all my life - thanks for your hard work in making it happen.
Posted by: reen | July 06, 2009 at 04:12 PM
Hooray! You paint an amazing picture.
My kids have yet to see fireworks. The late hour/toddler combination is a good excuse to avoid dragging my Iraq vet husband into loud explosions and the smell of gunpowder.
Posted by: Sadia | July 06, 2009 at 07:18 PM
I just found your blog...and I am glad I did. I really loved this post.
Posted by: Denise | July 06, 2009 at 09:59 PM
Brian - after reading the title, but before reading the article, I knew exactly what this was about. Change "kid with epilepsy" to "kid with diabetes", and replace "too see fireworks" with "to eat birthday cake", and you're talking about me.
Except my parents didn't let me enjoy birthday cake.
Now, I know that I can occasionally enjoy the guilty pleasures in life, I just may need an extra shot of insulin to keep my biological systems in check.
Good for you, for allowing your kid to be a kid. Sometimes you need to enjoy the moment, and address the after-effects later.
Posted by: Scott | July 07, 2009 at 11:04 AM
SWEET! You guys rock so. Freakin. Hard.
Posted by: Amanda | July 07, 2009 at 12:29 PM
Hey, Joey B: this THANK YOU is for you:
http://ifnotnowwhen.typepad.com/all/2009/07/take-time-to-thank-the-joeys.html
Posted by: Viaggiatore | July 07, 2009 at 06:04 PM
I didn't comment before b/c I couldn't think of anything original to say, but screw it. I'll just say I love this, 'cause it's true.
Posted by: R | July 07, 2009 at 08:54 PM
That was beautiful and I am so happy you guys were able to enjoy the night!
Posted by: Erika | July 07, 2009 at 09:53 PM
We took our son, who is also epileptic, to see fireworks for the first time (he's 5). He liked the "red balls" the best. "Smart" is relative...as are all things with epilepsy. Love is always smart, and this is love.
Bless you and your girl
Posted by: Ryan's Mom | July 08, 2009 at 12:41 AM
A wonderful post, Brian. But I always expect that!
Posted by: Bennie | July 08, 2009 at 11:43 AM