"Sometimes when I wake up, my mouth goes back to sleep." It was weeks ago Kathryn told me this. I paid it about as much attention as I pay to most of the nonsense she says.
It's impossible for the human mind to pay attention to all of the words that come out of a child's mouth. To try would be to court insanity. Court it, marry it, and raise children with it. So sometimes it's not until weeks after an utterance is made that its import comes to you. And kicks you in the face.
Kathryn awoke hours early this morning and crawled into bed with me. She put my arm around her, curled up against my chest, and fell back to sleep, and by sleep I mean beat the crap out of me. A sleeping Kathryn could power a city. Boise, perhaps. She is a marvel of kinetic energy, arms and legs twitching, starting, quivering, flailing. Bruising. Sound asleep, the girl spins around so much, all she is missing is an "air fluff" setting and she could be a clothes dryer.
This morning, as the hours of night gave way to day, Kathryn woke up once or twice, pulled my arm tighter around her--exposing my soft underbelly to her assault--and then drifted back to her pummeling sleep.
When she finally woke up for keeps, she sat bolt upright in my bed and I got to watch her have a seizure.
Twelve years ago, when I lived in Japan, I had a secret desire to experience an earthquake. I wanted to know what it felt like. So when one finally happened, here's what I learned: They feel wrong. They fill you with the overwhelming feeling that something wrong is happening, something that shouldn't be possible. Things--walls, beds, floors--behave in ways that they shouldn't, in ways in which they've never behaved before. That's what watching a seizure is like.
Her jaw locked open and her face shook. Her eyes rolled. Way back in her throat, her tongue clicked. She looked like a person trying to perform some Herculean feat, shaking with the exertion of lifting a boulder or willing something to explode with the power of her mind. It lasted for all of fifteen seconds, about as long as that long-ago earthquake, and then it ended. Kathryn's eyes came back forward, she gave a long blink, and her hand reached up to wipe away the two lines of spit making their way from the corners of her mouth to her chin. Her first words were too slurred to be understood, so she paused, swallowed, and repeated them.
"That's why I keep tissues next to my bed. Because sometimes my mouth goes back to sleep."
I totally feel for you, we went through the same thing. My son had casually mentioned to me a few times that "sometimes my body turns off." He is such an imaginitive child that i paid little attention until months later he "turned off" in a pool we were all swimming in and nearly drowned. He had breakthrough seizures for a while until we got him on the right meds and dosing. I hope all goes well with your daughter. Good luck
Posted by: Sandy | May 10, 2008 at 01:54 AM
Wow. You really get across how horrifying her seizures are to watch and just how tough and un-traumatized she is by them. Is she always that calm? And is it normal, is it okay to have this level of seizure, or is the medication supposed to suppress it?
Hugs to all.
Posted by: Amy | May 10, 2008 at 05:22 AM
In a pool, Sandy? Jesus. That is the scariest thing I've read in years. I'm glad I didn't read your comment until this morning, because I wouldn't have slept a wink last night otherwise.
And I would have somehow found your phone number and I would have made you stay up with me.
Posted by: Brian | May 10, 2008 at 09:49 AM
Have I told you and Sharon lately that you are my parenting heroes? And don't get me started on how much I love me some Kathryn Rose. Big hugs to all of you....
Posted by: 3-Martini Jennifer | May 10, 2008 at 10:37 AM
Wow.
Clapped my hand over my mouth. The (? adjective? can't even conjure one?) the horror of the moment is equalled only by your capacity to render it in words, for the benefit of those of us who haven't yet witnessed such a thing.
Thank you, for helping all of us who read this either (a) know something we should, for empathy/compassion's sake, or (b) feel that much less alone in our already knowing it.
Posted by: Polly | May 10, 2008 at 06:31 PM
Absolutely heartwrenching. How would you know until you witnessed it?
Posted by: amy | May 10, 2008 at 09:11 PM
I have never commented before, only lurking to read your brilliant writing. I concur that this post was the most heart-wrenching, scary thing I've ever read. I am sobbing right now for your dear Kathryn. What a beautiful, strong young lady you have been blessed with! I will say a prayer for her.
Posted by: Elizabeth | May 11, 2008 at 03:12 AM
oh poor the parents. Hope things level out soon. I will be listening very carefully to all those funky kid sayings from now on. Hugs for all of you.
Posted by: Heidi #2 but whose counting... | May 11, 2008 at 01:06 PM
Wow. I totally didn't see that coming. How terrifying for the both of you. I hope you get some answers.
Posted by: MadWomanMeg | May 11, 2008 at 05:22 PM
A beautiful post about a scary thing. Poor sweet girl, so tough.
Posted by: Velma | May 12, 2008 at 09:05 AM
I read the first line and knew what was coming. I hate seizures and I'm so sorry you had to join this club.
Silver lining: my 17 yr old can't drink. It speeds up his metabolism and depletes the medications in his system. If he were to drink, he's guaranteed a seizure the next day. Just a little something to look forward to in her teen years.
Posted by: Erika | May 12, 2008 at 10:36 AM
I had childhood epilepsy and the seizures scared me at first. But then I got used to it and found out that my seizures definitely freaked out other people more than it freaked out me.
As an aside, I was more prone to get seizures when I was tired. Her restless sleep might be something that contributes(?). I think it would be worth discussing with her neurologist.
Posted by: childsplayx2 | May 12, 2008 at 10:50 AM
I'm sorry she's having break through seizures and hope a quick meds adjustment will turn her mouth back on full time. I agree with childsplayx2 though, the restless sleep is worth discussing with her doc. - Does she sleep like that all night through, or just in the early morning hours?
Posted by: Katherine | May 12, 2008 at 12:06 PM
At the risk of sounding completely lame- the only experience I have witnessing seizures was our family dog. Knowing how helpless and frightened we felt over a DOG convulsing, I can only imagine the terror that rips through your heart as a parent. God, what you must feel like.
What a little trooper that Kathryn is though. I'm in awe of her adaptability.
Posted by: Amy the Mom | May 12, 2008 at 10:28 PM
that was terrifying...my heart rate is still up in the 300's...and she's not my kid. I couldn't even imagine how scared and how long that 15 seconds seemed. She is a brave brave girl. And to think it happens with some regularity when she wakes up!
Sending good vibes that the neurologists are able to get the seizures under better control right away!
Posted by: Colleen | May 13, 2008 at 01:09 PM
That was difficult to read, I can't imagine how hard it was to experience first hand. I'm thinking of you & The Mom, keep us posted when you can.
Posted by: Jaci | May 13, 2008 at 03:47 PM
God bless her.
Posted by: Tracey | June 14, 2008 at 08:29 PM
It sounds to me, Brian, like you're doing just fine.
You're respecting her understanding of what happens to her and not making a big deal of things - any epileptic's dream parent and believe me, I know!
As Kathryn grows she's going to need an extra ration of ambition and an extra ration of assertiveness because the ignorance and the wish to tidy away into corners the people who are different are still out there. The ignorant include not a few doctors.
Kathryn seems pretty bright - just bring her up as articulate as you are and, when the time comes, encourage her to fight her own battles and follow her own dreams.
Posted by: maureen | July 25, 2008 at 07:58 AM
My daughter has had epilepsy since she was a month of age, she's getting ready to turn six now. The earthquake explanation was a great way to describe a seizure.
Bless
Kirst
Posted by: Kirsten | August 08, 2008 at 04:58 PM
That is so scary. It's amazing to me that kids do not get as freaked out as we do by things like these. I'm sorry about this! But at the same time I'm glad you witnessed it, because you at least now you know - "my mouth falls asleep" would never have indicated to me that she was having seizures!! As scary as it is, it's scarier to think "what if I hadn't been there?" I think.
Posted by: Elisa | May 18, 2009 at 09:37 PM