Looky, Daddy!

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.

Because It's Not Like Moving Will Add Stress to Our Lives

Dear Rental House,

You are small. I'm sorry if that hurts, but you are. When we moved in three years ago, we found that a good deal of our furniture could not fit inside you. Our bed frame and mattress, our dresser, one whole couch, and a desk all went back to Texas in the moving truck that had brought them here the day before. The driver said he'd donate them to charity at some point down the line, but secretly I think he's kept them to make his own portable bedroom in the back of his truck. He seemed the type.

You weren't always so small, of course. Almost 200 years ago when you were built, you were spacious: A grand and glorious house replete with bedrooms, dining rooms, parlors, and the like. But then someone had the idea of putting up a wall right down the middle of you and doubling your housing capacity while halving your housing space. Who wouldn't like that, right? Who, indeed.

Rental House, I don't like you. There, I said it. And I don't think I'm alone. Remember that young man, over a hundred years ago now, that young man who lived here with his parents? Remember that day, in 1905, that fine day in May when he hatcheted his mother to death in what would later be our living room? Then he went upstairs and shot his father five times, once in the head? Happily they didn't make guns very well back then and the father survived. Of course, they didn't make houses very well back then either, no offense. It is rumored in the publications of the time that the young man was unstable, which begs the question of what need a stable young man might have of taking a hatchet to his mom, doesn't it? But I think his stability is beside the point. I think he did it because his parents chose to live in you.

Rental House, you were not always sitting where you are now. No, about ninety years ago you were down the block, right where that five-lane street is now. Finding you a hindrance to the building of that street, yet not wanting to deny anyone the pleasure of living within you, the good people of this town moved you. They built you a big basement and then moved you on top of it, and who am I to complain if the two of you didn't match up exactly right? I mean, I can barely set a cup of coffee down in a saucer correctly. And if those gaps between you and your basement let in a little dirt, a little sunshine, and sometimes a little water, well that's just part of the charm in living in you. You charmer, you.

Oh, how I'm babbling on, Rental House. I'm sorry. I never was any good at break-ups. Because that's what this is, you know: a break-up. My family and I have found someone else. A real house, the kind you take home to meet your mom, the kind you buy. And buy it we did.

Rental House, simply put, we're through. I hope the new For Rent sign doesn't hurt much when we pound it into your front lawn. Well, not too much.

Love,

Brian

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.

Not Mad but Still Yelling

Turns out, music exists. I thought it didn't anymore. I thought, while I was away in Raffiland, music had simply stopped. It had driven down to the levy, and the levy had been dry. But it hadn't. It has been going on without me, and I can't say I'm very happy about it. Why didn't it even call?

And you! Some kind of friend you turned out to be. I bet you knew the music hadn't died, didn't you? Didn't you? And did you tell me? No, you didn't. Not even a simple phone call, saying, "Hey, The Dad, I was, you know, down at the mall and, well, I kinda heard some music. I just thought you ought to know. Don't be mad."

But I'm not mad, not anymore, not now that he shock has worn off. How could I be mad when I'm dancing around my house for two hours everyday listening to WHATEVER I WANT. Yes, that's what I'm doing instead of writing posts for you. Or laundry. Or making money. Don't get me wrong, I'm always one song away from doing all those things, one song away from sitting down and bringing you the funny, but then the next song starts and, wow, it's another one not about little red cabooses, or kangaroos, or how five is such a pretty number and how awfully glad I should be that I have five people in my family but right now its me, just me, and I'm dancing around to songs that are about drugs and booze and sex and say words that I can't say here because my mom reads this and that I sure couldn't say in front of my kids even though I'm pretty sure Lila said motherfucker yesterday as she crapped behind the couch but she didn't hear it from me and she didn't here it from my music although she'd sure be hearing it now because that's what somebody is yelling from my speakers and I'm yelling right along with it and it doesn't matter what else I need to be doing because this is rock and roll and rock and roll waits for nobody. Except when I pause it to go pee, because I evidently drank way too much coffee this morning.

I'm listening to it all. Everything I have. There are albums here from back when I wore an earring and thought I was alternative. There are albums here from back when I wore a nipple ring and really was alternative. There are albums here from when my hair was longer than my wife's and from when my head was shaved bald. There are even a few from the past few years that friends have sent me or I have gone out and gotten myself, but have never really listened to. Not like they should have been listened to, you know?

You know that slightly disturbed friend you had in college who made mix tapes for every occasion? The one who would sit down in front of his stereo and put together 90 minutes of music for every break-up, every first kiss, every grade better than a D in Spanish class? That was me. When I listened to music, I really listened, with every pompous fiber of my being I listened. And so did everybody in my dorm, because I turned my stereo up to eleven and made them. And they should have thanked me, instead of calling the campus police. Ungrateful bastards.

So here's what I was thinking: Let's make a mix tape. Right now, together. Throw out a song, a good song, in the comments. You can explain your choice or just let the song speak for itself. It doesn't have to be deep or pompous or obscure and it doesn't have to show off your amazing indie cred, unless of course you live in the Lower East Side and then you can't help it. It just has to be good. And then maybe I'll do something with it. I don't know what that something will be, maybe nothing if you guys have really sucky music taste, but maybe I'll compile it all onto a disc or two and give it away as the prize for our next poetry contest.

I'll start. The opening song on our mix tape, which will, incidentally, be titled Turned Up to Eleven, is Elise, Elise, by The Real Heroes. (Click on the link and find it under "Listen." You'll be happy you did.)

What's next?

Gnaw.

Look at this face:

I saw that face last weekend at the Met. It is the face of a man in torment.

The face belongs to Ugolino della Gherardesca, someone you may say you know if you are a liar. And why is Ugolino's face contorted in such a way? He's gone camping.

No, not really, but close. Here's the whole statue:

Legend has it that, in 1289, for the crime of high treason, Ugolino was imprisoned with his children for nine months. They eventually starved to death.

I spent an awfully long time standing in front of this statue the Sunday before last, while Kathryn pulled on my hand saying c'mon, c'mon! It spoke to me in a way that I knew art could, but had not experienced until then. I'd probably have stood there longer, but despite the piece containing no fewer that five penises, it didn't hold Kathryn's attention for more than a few minutes, and she came very close to dislocating my shoulder before I finally turned away.

According to Dante, the most famous reteller of Ugolino's story, Ugolino was the last to die in the cell with his sons. As his children died, they begged Ugolino to eat their bodies, and before he himself died, he did.

It gets worse.

Ugolino's afterlife is spent in the ninth level of hell, eternally trapped in ice, with only his head free, which he uses to gnaw on the skull of the man who imprisoned him with his children in the first place.

I knew none of this when I saw the statue at the Met, and I'm not really sure why I feel compelled to share it with you now. Perhaps it is my way of saying that, while our family camping trip last weekend had its share of challenges, at least we weren't trapped together for nine months until we died.

And if we had been, I doubt I'd have waited that long before eating the kids. Hell, I came damned close to eating them Sunday morning when I realized I had left the eggs on the kitchen counter back home.

Boundless

I do these things so you can feel better about yourself. I do them so tonight, you can kiss your spouse and say, "At least you are smarter than that guy in that blog that I read.  Not as hot, sure, but a hell of a lot smarter." I do these things because deep down, underneath the gruffness, underneath the facades, underneath the cynicism, I am a moron.

And these things I do are camping trips.

Every night since our last attempt, when the twinlings are tucked into bed, Lila has asked hopefully, "Are we going camping tomorrow, Mommy?" (Of course, it is Mommy she asks because my wife has requested that my "interactions" with the children be kept to a minimum after dusk, since that's when I'm more likely to "lash out" at them "with my words." Or my "foot." Or my "car.") Yes, Lila asks this. The same Lila that woke up screaming every 40 minutes the last time she slept in a tent. So after putting them to bed, The Mom always comes over and unlocks me from my room and we all have a good laugh at Lila's ridiculous question. Then, one day, I said--I said--"Why don't we try it again in October." It's like I was watching someone else say it. Someone with different kids, or no kids at all. Or maybe I was thinking that October only comes every twenty years or so, you know, like it does for the Mets.

But October has come. And camping we are going. Tomorrow. Now that last time we tried this, you, Gentle Reader, commented with suggestions both good and wise, telling us to buy a trailer or rent a cabin or screw the whole thing and stay in a hotel, and I'd like you to know that we are completely ignoring you.

Our stupidity knows no bounds.