Looky, Daddy!

In Which We See Something New

"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."

There's a Something on Your Shirt

What's that? I'm sorry, I can't hear you. Could you please speak up?

There's what on you? Mucus? Oh, yes, that's from my head. My head is leaking mucus.

I know, I know, it's gross. Listen, can you do me a favor? Can you look into my ear and see if you see something? A pencil, perhaps, or maybe a pen knife? Something sharp?

Watch for the mucus.

No? No, you don't see anything, or no you won't look? Nevermind. It doesn't really matter. I'm sure it's there. I'd look for it myself, but opening my eyes makes it very angry.

Can't you see it? A big, angry pencil? Deep in my brain? Leaking mucus?

You are no help at all.

And You Thought All the Good Ones Were Taken

thechickensensation.com is available. So is superfuntimepagoda.com. Unbelievably, 100percentass.com is not taken, either. I take a break from blogging and what do I do? I search for domain names. It's more fun than, say, dealing with hospitals.

Ever since Kathryn's weekend hospital getaway, we have been inundated with hospital bills, so many we have considered using them to paper our new bathroom. And these bills are not regular bills either. They are toddler bills.

"I want money!" they scream. "Eleventy billion dollars!"

"I don't have eleventy billion dollars."

"But I want it."

"Here. Have some insurance."

"I don't want insurance. No! No! No!"

Right now, we have a veritable day-care of toddler bills screaming for our money. And if the bills are toddlers, our insurance company is, at best, a surly nanny.

"Now now," she tells the bills. "We talked about this, remember? Eleventy billion dollars is too much money for this. You are only allowed to ask for two thousand, okay? Two thousand dollars is all you can charge for an electroencephalogram. Now, I'll give you a little bit of that two thousand now, and you can get the rest from Kathryn's parents after you take a nap."

"Eleventy billion! Wuaaa!" the next bill we get says.

The system is broken. Hyperbole aside, our emergency visit, not including any extras, not including CAT scans, MRIs, doctors, neurologists, or even the crappy food, was billed at just over $27,000. Twenty-seven thousand dollars. We submitted the bill to insurance who paid out just $2,000 and disallowed the rest. That's $25,000 that our insurance company made go *poof*, about the price of a new, mid-sized, domestic automobile with half a tank of gas. Thank god we have insurance.

There are reportedly some 40-million uninsured Americans out there at any given moment. That's 40 million people who lack their own surly nannies who magically make 90% of their hospital charges go bye-bye. And, just like us, at any given moment, their daughters might choose to go shopping at the Epilepsy Store (your one-stop seizure shop!) and for them, the consequences can go far beyond the medical and deep into the financial. The system is broken.

Which is why it's no surprise that my domain name search showed at least thirty-five registered domains with "health care sucks" in the name.

But thingsthatlooklikepoopbutarenot.com is still out there for the taking. If you hurry.

Scarier Than Twins

I need a handler. I need someone to punch me in the arm when I'm about to write posts like my last one. Luckily I have one.

"You wrote that the tension in this house was almost corporeal?" my wife exclaimed yesterday morning when she read my post. "It had nothing to do with Kathryn's epilepsy, you were watching Game Four of the friggin' World Series, for Chrissakes. Apologize to those people. And then put your stupid thesaurus back on the shelf. Corporeal, indeed. Dumbass."

My handler needs a handler.

She's right, of course. The post was supposed to be a lighthearted look on how there are some scary books out there and if you read some of them, you might never leave your house again. But somewhere along the way as I was writing it, I believe it was at the top of the seventh inning, I started buying into the fear myself. And then the whole tone of the post changed and it went where it shouldn't have. And I am sorry.

Epilepsy is certainly not the first thing I think of when I think of Kathryn. No, epilepsy is a far distant seventh, behind number six, wondering if she's colorblind, a fear that strikes me right after number five, amazement at the clothing combinations she can find within her closet, and number five and a half, fear that those combinations might very well induce seizures in everybody but her.

But still, these books, these scary books that I'm reading still fill me with fear and anger. Not because their worst-case scenarios are affecting me or my family personally, but that they affect anybody anywhere. I shake my fist at my imaginary maker not because of what is happening to my own child but because brain disorders happen at all. Any reasonable person would agree that disorders of the brain, like the McRib sandwich, should simply not be on the menu of choices to begin with.

Kathryn, of course, continues to be fine. The neurologist had a box full of answers and encouragement for me and a box full of really crappy stickers for Kathryn. But she did ask Kathryn to hop on one foot for thirty seconds, which almost instantly made her the COOLEST. DOCTOR. EVER. The only friction we encountered was over the medicine. The doctor was concerned over the level of drowsiness that Kathryn has been exhibiting, and of course, I tried to minimize that aspect because as I've written before, its awesome. But there Kathryn was, yawning big ol' yawns right in front of her new doctor and even once curling up on the examination table which could not have been any more startling to me than if she had sprouted a second head that spoke in a British accent and called everybody Chip, but there she was doing it and the doctor talked about changing her medication if her sleepiness continued. So for Kathryn's next visit we're stopping off at a Starbucks beforehand because no way will I have the silver lining stripped from my seven-year-old's dark cloud.

And so life continues here. Halloween is tomorrow and Halloween is, of course, Kathryn's favorite holiday. We haven't prepared like we normally do, most of our decorations have already been packed away for next month's move, but we are still very much caught up in the spirit of the holiday. Kathryn will be a witch, but that was not her original choice. A few months ago, back when only the most dedicated were even thinking about October, Kathryn asked me if we could find the same set of clothes that would fit both her and her twin sisters. I asked her why and she said it was for a Halloween costume.

"It's the only thing I can think of scarier than twins," she said. "Triplets."

In Which I Roll the Rock

And just like that I'm never leaving the house. Okay, I'm leaving this particular house, but in the next one I'm staying put. And Kathryn's staying with me.

You see, I was doing just fine with this whole epilepsy thing until I started to read about it. Oh, epilepsy, I had thought, oh yeah, lots of people have epilepsy. Lots of normal people. And now Kathryn's one of them. And it's true. Lots of normal people do have epilepsy, and Kathryn is one of them. But then I started reading. In particular, I started reading Epilepsy in Our View, published by Oxford University Press, and just like that I was done. Done. Sorry. All done here. Bye, now. I'm rolling a rock over my door and calling it a day.

This is the scariest stuff I've ever read. The book, a collection stories by children with epilepsy and their parents, is a slap in the face of families upended and lives torn apart. Each page is rife with medicine combinations and side effects, children normal one day and then never again, parents who are trapped in their own houses with kids too fragile to leave, fathers and mothers arguing with each other on whether to lobotomize their offspring, and other things so scary they make me want to believe in a god just so I can curse him. Or her.

And there's also stuff like this:

Butterflies

The butterflies come way down my belly.
They flap and flap their wings. They fly up to my mouth and I try to catch one but it's too late.
My mouth freezes open and my hand shakes too hard.
The butterfly flies away and it's gone.
Until the next butterfly comes.

The author was nine years old. Two years older than Kathryn.

Exactly 25 days ago, I wrote that Kathryn's mind was an "interesting place." Now I spend many moments hoping that it doesn't get any more interesting.

Tomorrow is our first appointment with the neurologist since the original diagnosis. The tension in this house is almost corporeal.

Perfectly Normal

Things are back to normal now around here, and if you are a regular reader, you know that there isn't much solace in that statement. Kathryn is doing well. Her new anti-seizure medication is making her tired, especially in the afternoons, which is making me wonder why I haven't been medicating her since birth. Thursday when she came home, she said she'd like to lie down for a bit and I was momentarily speechless. Of course, Kathryn didn't lie down, not even close, but just hearing her say the words gave me a little thrill.

My wife and I are also doing fine. We have both held it together amazingly well over the past seven days, our feelings and fears buried deep below countless layers of stress, coffee, and adrenaline, and buried deep they would have likely remained except late Friday night Kathryn woke up just after midnight to go to the bathroom. It was nothing special, just a need to pee, but after she shuffled back to her sleeping bag, yawning and disheveled, my wife and I lost it. We lost it, then lost it, then lost it some more. And then in the wee hours of the morning we finally slept, really slept, for the first time in a week.

When I was in high school, I had a teacher who would give "zero tests." He was a great teacher, he knew his stuff and expected a high level of achievement from us, and as long as we didn't overstep our bounds, he would run his class in a very relaxed and congenial manner, by which I mean he played The Rolling Stones while we worked. But if we slacked, if we tried his patience a little too much, then he would slap us with a zero test. A zero test was an impromptu five question test, written on the spot, and the highest grade you could make was a zero. Every missed question drove your score into negative numbers. When the test was over, he'd apply your score to whatever was the last grade in his gradebook. If you got all the questions correct, your grade in the gradebook stayed the same. Any missed questions and that grade went down, sometimes way down. And that's where I feel we are right now. This epilepsy is a zero test. Hopefully, if we keep up with everything, if we get the good breaks and a little luck, then we will finish the test at a zero. We will expend a great deal of energy, see many specialists, adjust many medications, and have a little freak out at every nighttime potty run, all to break even at zero. Nothing will be gained, but nothing will be lost. And before you tell me, I know how that sounds. I know that many people will want to say that there is something to be gained by this experience, that even in adversity there are life experiences to be made and strength to be built and whatnot. And to you I stick my tongue out and say pppbbbbrt!

Okay, I'm sorry, you don't deserve that. You truly deserve nothing but the best. This past week I have been humbled and awed by you and your response to our little excitement here, both collectively and individually. I know its cliche, but this here Internet is a wacky and oft-times unfriendly place, and yet I am blown away by how it can scramble together and support those in need. I am lucky to be a part of that. Thank you. But still, pppbbbbrt!

Kathryn's diagnosis remains Benign Rolandic Epilepsy, which is a great relief. In fact, everything from about three hours after the initial event has been a relief. Clean MRIs, no lasting damage, no nothing. Just a mild form of epilepsy which should disappear at puberty, so now I'm sitting here actually hoping that Kathryn goes through puberty early. God help me, I will so regret that. Perhaps I won't tell Kathryn that her condition ends when she matures. Maybe I'll say it worsens. And that she's more likely to have a seizure in a time of great excitement and/or nudity. You don't think that will scar her, do you? Okay, then, how about if I just tell that to the boyfriends? "Son, she'll likely have an episode if you kiss her. Don't be surprised if she throws up in your mouth a little, that's normal. Perfectly normal."

Home

Kathryn is home from the hospital, has been for two days, not that I wrote to tell you about it because apparently the nurses and doctors and orderlies and free cable did not follow her home and now if something needs to get done, there's no longer a little button I can press. And at home, all of the rules that were bent or broken over the weekend have to slowly mended, which means that I've spent an amazing part of the last two days telling the twins that they can no longer sit on the couch with bowlfuls of peanut M&Ms and watch The Little Mermaid.

Kathryn's second night of EEGs came back with the same reading as her first night, very active and very spiky, very ripe for more seizures. So now we begin a new phase of her childhood, the one in which she's epileptic, the one in which learned people tell me that they don't expect her new medicine to affect her school work too much, or to make her that irritable. (I have learned that "irritable" is not the same as "irritating," which is not currently a treatable condition. Shame, that.)

Kathryn herself is mourning the loss of her loft bed, and is now sleeping on the floor, in a sleeping bag, which she says is just like camping without being outside or the inevitable screaming. On the plus side, Camilo greeted her at our doorstep early this morning, holding a new Webkinz and looking like the most hopeful suitor in the history of second grade. I think he had even brushed his hair.

Kathryn and he named her new little animal Lucky.

As Two Days Stretch to Three

I've been banished from the kingdom. Banished by the Queen. My crime? Kathryn says I snore. How she figures this I do not know because I swear I never slept a wink last night. I think she's full of crap.

I think the real reason I'm sleeping at home tonight is that, after putting the twins to bed, Sharon showed up at the hospital with two bottles of toenail polish and a pair of fuzzy slippers and bribed Kathryn into giving me the boot.

Kathryn is still in the hospital. She's staying another night. She's still wired up, twenty-four copper electrodes cemented to her head with something that I swear smelled exactly like model airplane glue. It took an hour to put them all on and I guess the hospital is quite proud of them because they simply refuse to take them off and let her go home. Kathryn is also quite taken with them, and over the past two days she has wondered aloud multiple times whether there's a particular lobe of her brain that lights up each time she beats me at cards. Then she adds, almost as an afterthought, that the doctor will probably mention it if there is, because it's been lighting up a lot. Gin.

She's doing better, one hundred percent so, but her EEG reading is all over the place. The neurologist sat down with us and told us that Kathryn's brain was "unusually active," like anyone who had been in Kathryn's presence for more than thirty seconds couldn't have told her that. I am so not paying her bill. The preliminary readings are that Kathryn has Benign Rolandic Epilepsy, which if you know anything about epilepsy, you are probably relaxing now and if you don't know anything about epilepsy, then you can at least recognize the word "benign" and breathe a sigh of relief as well. Basically what I know from the crash course I've had over the last two days is that if you had to go to the epilepsy store and buy a kind of epilepsy for your kid, this one is the one you should get. Especially if you can get one that matches the drapes.

This was not Kathryn's first seizure, although I didn't remember the previous one until I was grilled by the doctor in the ER yesterday. It happened in the middle of the night just over a year ago, my wife woke up to the sound of Kathryn grunting and thrashing. It lasted about half a minute and, to be honest, it was one of those cases that, by the light of the next morning, seemed almost imagined. Maybe, we reasoned, it had just been a particularly bad nightmare. We followed up with our pediatrician, and both the doctor and my wife and I had a that-sure-was-strange-let's-see-if-it-happens-again attitude that rendered the whole episode forgotten by the end of the week. And let me tell you, it would be harder to feel more stupid than I did yesterday, facing an emergency room doctor and telling her that, you know, just now when I said that Kathryn had no history of seizures? Oh silly me!

So on we go. More readings and more tests are scheduled for tomorrow. I'll write when I know more.

Small

The Mom, whose name is Sharon because I don't feel like cute nicknames right now, called me upstairs this morning. I was reluctant to go, because Autumn has finally arrived in New Jersey and the twins and I were celebrating by burning our house down. Well, not me, I was trying to light a fire in our wood burning stove, but the twins were all hands and arms trying to reach around me and spread it to the rest of our home. So when Sharon called, I balked. So she called again, and the second time there was an edge to her voice that made me move. I stuffed a protesting twin under each arm and headed upstairs.

Something was wrong with Kathryn. Getting out of bed, she had fallen, she had bumped her head. She couldn't stand; my wife was holding her. Help her get to the bathroom, my wife told me, she can't walk. But there's a reason that it takes two people to raise a child, because of course she could walk, here, watch. I took Kathryn's hands and we took a step down the hall. She dropped like a rock. Something was wrong with Kathryn.

The next few minutes stretched out for miles. Kathryn's left leg wasn't responding. Her left arm wasn't moving either. She didn't understand that this was happening because she wasn't understanding anything. "Kathryn," I asked, "how many fingers am I holding up?" She was looking off to her right, not at me, not at my fingers. "Two," she said. "Kathryn, my fingers are here, can you see my fingers?" I waved my hand, I waved it hard, my wife was looking at me, her eyes wide and scared, like mine. Kathryn didn't turn her head. "No. I lost them," she finally said.

We helped Kathryn onto the toilet, but it no longer mattered, she had lost control of her bladder already. We cleaned her up and I peppered her with questions. Did she know where she was, where she went to school, who her teacher was? She got them all right. Then I tried again with the fingers. I put one finger directly in her line of sight. "Kathryn, do you see my finger?" "Yes." I told her to follow it with her eyes and when I moved it, her gaze didn't shift. "I don't see it anymore, Daddy."

I broke several major traffic laws this morning getting here, to this hospital. It had taken Sharon and I several minutes to dress Kathryn in clean clothes, not just because her left arm wasn't responding but because Kathryn didn't understand that it wasn't responding, which made putting on her shirt somewhat similar to trying to knit a live sheep, but once dressed, we loaded her into the car. Sharon stayed behind with the twins and I drove at unreasonable speeds to this hospital that, until today, I would have said was 30 minutes away. Now I know it's only 10.

Halfway here, Kathryn started throwing up.

A few months ago I got an email. It was a letter from a gentleman whose wife was about to have their first child, and he wanted to know if it was really as bad as I present it to be. He had been reading this site for a while, reading while I gleefully related all the casual harm that parents and children inflict upon each other, and he wanted to know, before the child arrived, if it was really that bad. Of course, the answer is no, it's not. But sometimes, oh those sometimes, it is the scariest fucking thing you can ever imagine.

Sharon had called ahead to the hospital so they knew I was coming. The doctor met us at the door. It was just a hair past 8 AM. Now it's just past midnight and we are still here. Kathryn is asleep next to me, with exactly twenty-four EEG contacts glued around her blonde head, and she's snoring.

By mid-morning, Kathryn had almost returned to normal. She was still throwing up, but her body functions had returned and her ability to track a finger had, too. The doctors think that this morning she had a seizure, a whopper of one, that left her brain temporarily unable to do the things that a brain normally does. We are still here because they want to monitor her overnight.

I should be asleep, too. I know that there are people monitoring her right now, on little computer screens, and they'll know even before I do if something goes wrong, but she's so small. She's so small in this big hospital bed and she's got wires coming off her head and IV drips in her arm and something happened in her brain this morning, in her brain, and for a few hours this morning my Kathryn was gone, she was gone, and the spark in her eyes was dulled and I didn't know if it was coming back and she's so small. She's so small.

She's so goddamned small.

Because You Care

Emails, phone calls, and case worker visits are but a few of the consequences of posting pictures of toes on sinks. Perhaps a public update is in order.

Lila is fine. Her normal toddler jog has a conspicuous dip to it and her natural tendency to wail piteously is a bit more pronounced, but she's fine. The doctor has told us that her nail and all the surrounding parts should theoretically grow back, but he didn't look ready to place a bet on it just yet. He did have some targeted words to say on the subject of barefoot brick-laying, but my wife was not in attendance to hear them.

Next, the photo is real. That said, it did make the flap of skin (and that's really all it was) look a hell of a lot like a whole toe, didn't it? I myself was horrified to see it on my computer screen and could not resist the temptation to post it without explanation. If The Mom hadn't chimed in early that there was "no bone or muscle" damage, I surely would have left it up to the imaginations of my readers for much longer without comment. You should thank her. Then tell her targeted words about barefoot brick-laying.

This morning we went into the backyard for the first time since the injury. Lila was fine and went around the yard (fully shod) pointing at various paving stones saying, "I not picking it up, Daddy! I not picking it up!" For her part, Victoria spent her time sitting across from me at our patio table, occasionally asking for a sip of my coffee. When I finally acquiesced to her badgering, she gave me a distrustful look and said, "No, thank you. It's awfully bitter."