Sparky

Kathryn imagines her thoughts as sparks. And her brain is a forest. She tells me that most of the time sparks can fly around a forest and nothing will catch on fire. Sometimes the sparks land on dirt, or in a puddle, or they just bounce off of the tree trunks. Plus it's wet in a brain. Kathryn should work for PBS. She should do voiceovers for science programs. She should write the scripts. You would all watch them. You would rearrange your schedule to make sure you could.

Almost always the sparks fly around the forest and it's okay, she says. And then, every once in a while, her voice rises a little here like she's saying oh those crazy sparks, the sparks catch things on fire. And that's a seizure.

Kathryn doesn't talk much about her seizures, mainly because they don't happen very often and because they aren't Webkinz, but when she does, it makes me happy I have this website. People should hear her. And by people, I mean the people outside the radius of her normal speaking voice. Which is a half-mile.

Anyway, now that we know she's still having seizures, the medicine tweaking begins. A little more at night, and now some during the day. Controlling the sparks. And part of me wants to cry out: But she's Kathryn! She's supposed to be sparky. Sparky and quick-witted and bouncy and full of beans. But the rest of me knows that there isn't enough medicine in the world to empty her of beans. Her brain will eat these meds like candy. Certainly, up to this point, the medicine she's taken at night hasn't, say, kept her in bed more than usual. Kathryn continues to fight sleep like a prizefighter, convinced that as soon as she closes her eyes, there will be a party she'll miss. She's certain we tuck her in every night with our pockets filled with streamers and noisemakers and cake with ice cream and all we need is for her to drift off so we can PARTY! Which, of course, is true, if you substitute 'PARTY!' with 'fold laundry and bicker.'

The irony is her EEGs show the biggest party happening every night around here is the one happening in her brain. Her wet, forested brain.

Comments

[Diane]

OK, first off, regarding your Twitter comment: STOP BLAMING YOURSELF. (Easier said than done, I know, but stop it anyway.) You did nothing wrong. In fact, you and The Mom did a wonderful thing: bring a bright and bouncy, bean-filled beauty named Kathryn into the world.

Second, I'm SO glad she's feeling more like her usual, sparky self. May her voice volume always go half a mile down the street, and may her brain stay well-forested. A loud, imaginative Kathryn is a treasure we all feel privileged to know and "watch" grow up. Even in tough times.

[R]

she is very poetic! I hope you find the right mix soon to keep the sparks without the fire.

[Danielle-lee]

Oh, what a bright child. I just want to hug her! I hope you guys can find the dosage that works for her.

[Beth]

Hmmm, maybe you could motivate Kathryn to go to bed by pointing out that seizures come to sleep-deprived epileptics. More sleep, fewer seizures. Of course this could backfire if she wants to demonstrate them to a sleepover buddy or houseguest.

PS--what a great metaphor. She has a better grip on what starts seizures than most medical professionals!

[LiteralDan]

I'm impressed with her grasp of the concept of a metaphor. She would be welcome in any high school English class.

I think if anything, that tells you she will work through this in time, and it will all be a distant memory one day.

[Brooke]

Wow, double wow. What a eloquent and creative way to explain the seizures. I can almost see them bouncing off of tree trunks or landing in a mud puddle, as well as catching a twig on fire. I want to sit down and have tea with Kathryn one day and just listen quietly as she explains the world to me.

[The Mom]

Exciting! I knew we had a date to fold laundry tonight. I had no idea that bickering was on the menu as well!! What fun--I'll bring the streamers.

[Sadia]

Oh wow! How old is she? That's an incredible metaphor. I wish I were half that creative ever in my life.

This sounds like a frightening journey, but one you're taking with a great attitude. Thanks for sharing it with strangers like me.

[Margie Blystone]

I would totally watch anything Katherine narrated... What FANTASTIC imagery!

Wish it wasn't such a frightening topic.

[Deanna]

I'd be curious to know what y'all have told her about her seizures.

[Alexis]

Kathryn's description of seizures is right on! I developed a seizure disorder after brain surgery and when people ask me to describe them I tell them it's almost like my brain goes on overload and short-circuits. After it's over my brain resets and I start over. After much trial and error I am on a medication that works. You're in my thoughts.
P.S. Don't forget the wine for your date tonight.

[John]

That is incredible. Did she really come up with that herself? I just may use her description when I have to explain seizures to patients and families. Will I owe you some kind of royalties?

[Habasabi]

Oh my.. Poor little sweetheart! She's so smart! I wish you so much luck at getting her medications that work... You are all in my prayers!

[Scattered Mom]

I honestly think, once things have settled for your family, that you and Kathryn should write a children's books about "Sparky".

It would be amazing for other kids who have seizures, and help those who don't understand.

[Victoria]

Your writing about this is absolutely beautiful.

There must be a book.

[Tammy]

I agree with Scattered Mom. And when do you think she'll start writing scripts? I'd like to block out some time in my calendar right now. She is so awesome.

[Val]

She is brilliant. And you are a wonderful daddy. I'm wishing all the best for the right med dose, and I'm hoping these go away for good as she gets older.

<3

[Litte Bird]

No one is able to explain how something feels better than a child who knows. Kathryn seems to really know how to explain things so you can understand. And that is fantastic. I wish I could explain things so others could get it. Consider taking all her wisdom and edting it into a book. She could help so many.

[Laura]

At the risk of being redundant, I agree about the book. Kathryn could write and illustrate a children's book about seizures and you could edit! But I don't think "shit fountain" would have any place in the title of this book. So, LD, you would have to wait and write your own book with that in the title.

But seriously, think of all the good she could do for other kids with epilepsy if she wrote a kids book. You and the mom should seriously discuss that with her.

[Jamie]

I only know you and your family through this website which isn't much. However, I know this ... You have an amazing little girl - and I am sure her out look and approach to all of this has a lot to do with you and your wife. Here's to Kathryn keeping her spark - and the meds stopping the fire.

[Lisa]

Your posts are amazing. You have a beautiful, amazing child and I love reading about her. Hold her tight, no matter what. She and you are in my prayers...whether you believe in such things or not.

[Heidi #2 but whose counting...]

But will Gertrude the Guinea Pig Fairy have a cameo in the book?

[Rachael]

What an amazing kid! I am always amazed by the things children come up with, and it seems like sometimes kids with health issues come up with the most amazing, astute, intelligent and unique ways of looking at things.

[Amy]

Alexis: I know it's rude to correct another poster's spelling, but I think you meant to type "Don't forget the whine for your date tonight."

[sara]

Laura & others are right on with the kids' book idea. Powerful metaphor/ imagery going on there, Sparky's Dad. Kathryn's wit & intelligence shine through here.