There's Nothing Smart About Taking a Kid with Epilepsy to See Fireworks

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.

Comments

[Mort's Mom]

How glorious.
A precious experience, gracefully shared with those of us fortunate enough to be allowed a small peek into your lives.
Go Kathryn - catch those stars.

[Andy Morley]

Very touching, I have a son with Epilepsy so I fully understand your heart ache, I have never suffered with epilepsy myself so it's nice to read that another parent is feeling the same as me.

Fantastic blog post , all the best Andy

[allmycke]

Kathryn is one lucky girl to have you and the Mom on her team.

[Tam King]

How beautiful. Kathryn has her fair share of troubles, but with you two on her side, it hardly matters.

[Lucy]

That was just such a gorgeous post. I think we all have moments where we put fear and reason aside to watch our kids truly live. Sounds like that's exactly the gift you gave to Kathryn last night.

[Twice Five Miles]

This is just beautiful. What a wonderful parenting moment.

[Laura]

Measured risks in the everyday.

Because a life not lived fully is not living.

Kathryn is very lucky to have you and The Mom as parents. You don't bundle her up and keep her from from exdperiencesin the name od safety.

Happy 4th and 5th of July.

[Laura]

Apparently I shsould not post comments at 8:53 AM after 5 hours of sleep. Lots of typos, but you get the idea.

[Joey Baker]

I was wondering this morning about my efforts to bless people , usually my wife and kids. As I spent many hours yesterday from morning to night setting up racks and laying out cables, loading over 3000 shells, I was wondering if my efforts were in vain , because my wife ,my mom and dad, my kids nor any of my friends, nobody I knew would see my efforts to bless .
thank you for taking the time and sharing your story and blessing me.
Joey B. pyrotechnician

[Brian]

Joey, no, thank you. I wondered briefly last night, as the crowd gasped and all three of my girls clapped, if such sounds ever reached the pyrotechnicians responsible for it all, then realized you all were wearing such powerful ear protection, there'd be no way. So I'm clapping now.

[Chickenpig]

I can't tell you how happy I am for you that K got to enjoy fireworks without any inner fireworks. What a magical moment! And beautifully written, I must say :)

[Kath]

Wow, just wow. I got goosebumps reading this post.

[M3]

Beautifully written, and beautiful parenting. You guys rock. (I always read but never comment. Yeah, shame on me.)

[Shnerfle]

*sigh* This post is the most beautiful thing I've read in a long while. When we become parents, we wear our hearts on the outside. You described that sensation so truly. I can see the lights on her face, but I can also see you, reflected in her shining eyes.

[S]

I am so glad that she enjoyed the fireworks. and Hugs to you and her Mom.

[Heather @ Mama Sass]

Sometimes smart and experiencing life just don't mix... :)
What a beautiful post.

[elizabeth]

A perfect description of living life despite.

[Fawn]

Damn you for making me all teary. Again!

[Desiree]

Fabulous!

[Didactic Pirate]

Outstanding. Sounds like a pretty much perfect memory that you'll all carry around for a long time.

[ErinPatricia]

Beautifully written.

[Phaidra]

Joey - Thank you from my family, too, 'cause we were hooting and hollering during the fireworks, too, and I thought that I wish I knew the people lighting the wicks so I could tell them thank you in person.

Brian - You almost got my special comment today... almost. ;-)

[Robyn]

Wow, Brian. Thank you so much for sharing your 4th of July with us. I'm honored to have a glimpse into your experience. :)

[Renee]

Brian - I have a son with epilepsy too, and I've felt guilty in the past for taking him to see fireworks, even though I *know* I can't protect him from everything, nor should I. You expressed, so much more beautifully and eloquently than I ever could, what I've felt, so thank you, from the bottom of my heart. Kathryn is a lucky little girl...

[Sky]

Brilliant. I'm going to try this next year...watching my children's faces the entire time, instead of watching the fireworks and stealing glances. I've seen many years of fireworks, but the expressions on their faces will only be there for a few more. Thank you.