I've begun this post seventeen different ways and all of them sucked. Actually one of them didn't, but I abandoned it anyway because it didn't meet even the low standards of good taste that this blog maintains, plus it featured a grotesque illustration I found of how doctors treated epilepsy in the Middle Ages (Answer: Poorly). Beginning it this way sucks, too, but at least the post has begun, so let's move on. I bet the ending will suck, too.
Kathryn is back in the hospital, for a three-day stay of tests and observation. The seizures are proving to be more wily than the medicines she is taking, and so they have brought her in to glue twenty-four electrodes all over her tiny blonde head and see if they can figure out why. A twenty-fifth electrode goes over her heart.
The seizures are getting longer and stronger. Last Sunday, in heavy traffic on the Garden State Parkway, I looked in my rearview mirror to see Kathryn twitching and jerking, seatbelted into her seat. My wife spun around, but the only assistance she could lend was to swipe at the spittle coming from Kathryn's mouth as she threw her head around, a horse fighting its rider. The seizure lasted longer than any we'd seen before, and it left Kathryn wasted, spent, and sick for the rest of the day and long into the next.
It's been only nine months since these seizures have entered our lives. They have stopped being funny. Right now, everything has stopped being funny.
Well, everything except this.
Sleep eludes Kathryn. Or maybe it's Kathryn who eludes sleep. She fights it as she always has, but now when she wakes, she immediately stakes her claim to the day, even when "day" is still several hours away. Not that I can blame her. How can someone sleep when they know it brings the seizures? But yet it's tiredness, more than anything, which triggers them during the day. Catch-22. Like if eating chocolate made you fat, but eschewing it made you fatter.
Sleep doesn't come any easier to the rest of us. It's 2:17 AM. I've opened and shut this laptop so often in the past three hours, I fear its hinge will soon fail. The same goes for the switch on the bedside lamp. The house is still and quiet, and still sleep won't come.
But the end of this post will. And it will suck just as much as the beginning did.
See?
Your sucky post was a wonderful read despite it being full of awful, scary and more awful. I thought of your wonderful blog today listening to the newest Justin Roberts CD (great musician--kid music that adults aren't embarrassed to love). There's a terrific song called "Stay at Home Dad".
Anyway, I'll leave you with a great poem from my friend's blog (her toddler son has a rare form of cancer):
There once was a young fellow who had trouble getting to a place called Solla Sollew, where they never had troubles, at least very few. (Dr. Seuss was a wise man). At the end of his journey he tells us:
Then I started back home,
To the Valley of Vung
I know I’ll have troubles
I’ll maybe get stung
I’ll always have troubles
I’ll maybe get bit
By that green headed Quail
On the place where I sit
But I’ve got a big bat
I’m ready you see
Now my troubles are going
To have troubles with me
Posted by: T. Jones | July 17, 2008 at 03:02 AM
Brian and Sharon, I am SO sorry....that's all I can say. Keeping everyone in my thoughts....
Posted by: Anne Prince | July 17, 2008 at 06:56 AM
I am so very sorry for all of this. Will be keeping you all in my thoughts.
Posted by: Sybil Vane | July 17, 2008 at 08:03 AM
My heart aches for you and Sharon and Kathryn. At least the twins' boo boos you can bandage. Sending good thoughts and vibes and fairy dust your way. If only modern medicine included vibes and thoughts and fairy dust.
Posted by: Laura | July 17, 2008 at 08:13 AM
So sorry that you all are going through this. Saying that it sucks is a huge understatement. We all hope that the doctors are able to do something that will help, and that you'll be able to get some more sleep.
By the way, unlike the epilepsy, this post did NOT suck.
Posted by: Chickenpig | July 17, 2008 at 08:44 AM
I think it was the subject matter that sucked, not the writing about it. Whatever good healing thoughts I have are yours. Well, Kathryn's.
Posted by: Carrie | July 17, 2008 at 09:01 AM
i'm fairly new to your blog but i am praying for the best for your daughter. your writing is amazing and i hope you are able to get back to feeling lighthearted someday SOON!
Posted by: lisamarie | July 17, 2008 at 09:08 AM
It sucks big hairy donkey balls that any of y'all are having to go through any of this, and I think Kathryn is staring at the biggest set of donkey balls. I hope answers are found with all the testing and some sort of solution finds its way into your lives. Kids shouldn't be afraid to sleep and kids shouldn't have to deal with the stuff Kathryn is dealing with. It's not fair.
*hugs*
Posted by: Burgh Baby | July 17, 2008 at 10:11 AM
It sucks giant hairy donkey balls that any of you are having to go through this, and I think Kathryn is staring at the biggest pair of balls. I hope the testing brings some answers and some sort of solution so that this can all get under some semblance of control. It's not right that a kid should be afraid to sleep. Not right at all.
*hugs*
Posted by: Burgh Baby | July 17, 2008 at 10:15 AM
Dude. It ate my comment, chewed on it slowly while I tried to reconstruct it, then spit it out AFTER I hurt my brain. Sorry for the sort of duplicate.
Posted by: Burgh Baby | July 17, 2008 at 10:17 AM
I am very sorry and will be sending lots of positive thoughts across the ocean to your family...
Posted by: Marguerite | July 17, 2008 at 10:18 AM
My thoughts and prayers headed your way! Lifted Kathryn up to a little virtual prayer group at cre8buzz.com too. Hope you don't mind.
Posted by: PG | July 17, 2008 at 10:30 AM
Yeah. That sucks. I wish I could help somehow, so I'll be praying to Joe Pesci for you.
Posted by: sasha | July 17, 2008 at 10:39 AM
So sorry that little Kathryn has to go through this. My thoughts are with your family.
Posted by: Angela | July 17, 2008 at 10:40 AM
I'm so sorry. I hope that this hospital stay does some good and they figure SOMETHING out for your little girl.
Posted by: Rachael | July 17, 2008 at 10:55 AM
It breaks my heart to read this. I know that fear of sleep. I know the catch22. I have it too but I'm not a child and I tear up thinking about your daughter. She has to be one strong kid. I think it's safe to say I admire her.
Posted by: Knight | July 17, 2008 at 11:02 AM
My heart goes out to your little girl. I hope the three days of testing and observation yield some answers and much needed relief and rest for your family.
Posted by: Meredith | July 17, 2008 at 11:03 AM
My thoughts and prayers are with you all at this time and all the time.
Posted by: Erika | July 17, 2008 at 11:03 AM
oh man. My heart truly hurts for all of you. They better come up with some answers...
Posted by: | July 17, 2008 at 11:16 AM
I am again at a loss for words. My heart goes out to you and your family and I hope this all comes to a quick and satisfying resolution for you.
Posted by: jon deal | July 17, 2008 at 12:08 PM
How scary and awful and rotten and no fair and yuck.
Sending good thoughts your way.
Posted by: Jess | July 17, 2008 at 12:24 PM
I haven't read/commented in FOREVA-- I'm so sorry to hear about Kathryn's seizures. So very scary. I am sending tons of positive thoughts and homeostatic funnies (on the off chance that you cope with stress using inappropriate humor, as I do) your way. Give that 25th electrode a kiss from Auntie Djangette.
Posted by: django's mommy | July 17, 2008 at 01:06 PM
Fuck. I'm so sorry that you're dealing with this. I hope you get some answers soon.
Posted by: kate | July 17, 2008 at 01:14 PM
my heart breaks for all of you. i hope you get some better answers and a good plan out of this hospital visit.
Posted by: rosie | July 17, 2008 at 01:28 PM
I hope they find something for your little girl. Something to make her less afraid. It's a long haul - a marathon and not a sprint for your whole family.
I am sorry you are at such a loss. Not being able to help your child ...I can't imagine.
Posted by: swirl girl | July 17, 2008 at 01:42 PM