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.

Comments

[debbeeanne]

I'm sorry you guys have to go through this. But keep in mind you are hearing about the worst cases. They don't write books about the ones who are doing fine, because that would be boring. Hang in there.

[ChristieNY]

Oh The Dad. My stomach is in knots and my heart aches for you. Being a parent is so, SO hard. Hang in there, and let us know how the appt goes... ((hugs))

[The Dad]

I'm sorry guys. I just re-read this post and realize that it comes off a lot worse than I really feel right now. Maybe now I'll learn not to leave my writing to late on a Sunday night when everybody else is asleep.

I should have surfed for porn instead.

[Sarah]

I'm delurking to say that we're sending a helluva lotta good thoughts your way. We're expecting our first in a couple of weeks, and I've so enjoyed reading your site. I don't even really know what words to say other than you're in our thoughts.

[Kate C.]

I did a whole bunch of readings on living with my particular chronic illness for a class once. Memoirs this and poetry that...

I have to tell you, according to everyone else, by now I should be blind, with renal failure, neuropathy, and gangrene. None of those things have happened and I don't intend to let them.

Not only that, I have lived by myself, travelled alone through Europe, spent time in third world countries, and had to stop my parents from delivering to boyfriends the "throw up a little" warning.

The docs made the mistake of telling my mom I would probably never be able to have kids, either. She kind of rolled her eyes and went "yeah yeah, medical science will probably deal with that." And it did.

Chronic conditions can be bad and complicated. But most of the time, they are just one of life's small pains in the tuchus.

[MicheleS]

I'm so sorry that you are dealing with this scary stuff. My singleton has seizures due to a brain tumor and hydrocephalus. Not to say that is why your daugther is having them, but to say this is why we originally got him diagnosed. When you meet with the neurologist, ask for a CAT scan. You need a good look at her brain. Get copies of all your findings and films too. Keep reading, no matter how scary it is, because they'll try to snowball you if they think you don't know anything. There is power in information, even if it scares the shit out of you. Ask questions. You are your child's advocate. Good luck and hope she is fine!

[Niki]

My sister was diagnosed with epilepsy about 22 years ago...she was 4 years old then. We did a bit of experimenting with medications to find the right one. And really the worst side effect she ever had was this one drug that made her want to bite people. But hey, she was 4 years old. She's doing great now and lives a completely normal life. And hardly bites anyone anymore!

Do your research and seek all the medical advice you can...but when it comes down to it, you know what is best for your little girl. And don't let any doctor ever tell you otherwise.

[Matthew]

Don't let other's views freak you out. Go by what you see.

There are many of us who outgrow our epilepsy and have wonderfully normal lives.

Just do all you can medically and don't worry about things you can't control.

Best of luck to you and your little butterfly.

[Shawn]

So far, my nearly 2-year-olds are healthy as can be and I still want to roll a rock in front of all of our doors and never leave this house. Or, our next one, wherever that may be.

Wishing Kathryn a healthy, normal (the new normal) week!

[Susannah]

that must be scary. it's true, though, that K's epilepsy is different from others. information helps make things less scary. you can do research and find out all you can, but, still, try not to read too much and make it worse for you. you are all in my thoughts.

[Petunia]

The Dad (and the Mom), now and again, you need to let it out, the stress, the worry. Find an outlet somehow, somewhere or someone. It'll really help you to cope. Maybe it's late night blogging for you.

[Chickenpig]

Or...everything could be absolutely fine okey dokey. I had my first grand mal seizure when I was 16. My sister was there, but I don't remember any of it. I had a couple of minor ones where I saw flashing lights and had numbness and etc when I was in college, but other than that...nada zip nothing. It took until I was 21 to be cleared to drive, but other than that life has been normal.

The frontal lobotomy thing is only done in extreme forms of the disease. I worked with a little boy who was having this done. He had been having seizures about 10 times a day or more since birth, and was blind and severely mentally disabled because of them. Your daughter definitely isn't, and won't ever be, in this category. Breathe deep, relax, and repeat.

[Sara]

I have epilepsy, I've had it since I was 11. How did it effect me as a child? No top bunk, early bedtimes.

How does it effect me as an adult? Not really. I've got to be careful about getting overtired. Stay away from hurting myself. Pain and fatigue are sure fire ways of having a seizure.

Apart from that I'm "normal". Well as normal as I can be I suppose.

[Loretta P.]

What a beautiful piece of writing.

[You can call me, 'Sir']

Dammit, The Dad! This is exactly why you shouldn't read books! Now, stop it! Put the book on the table, and back away slowly! Don't make me stop this internet and come over there!!

[Angela]

Dear The Dad, knowledge is power and ignorance is bliss, I really hope you can find a happy medium somewhere between the two quotes. I am so sorry that all of you have to go through this. Sending good thoughts and hoping the neurologist has positive comments. Please take care.

[Erika]

Hang in there, and sending good thoughts your way for today's appt.

[Diane]

The Dad (and The Mom), Kathryn is the prettiest little butterfly I've ever seen. Fly and be free, little lady.

[Sue]

I don't think that a silly old rock is going to be stopping your butterfly anytime soon. Kathryn has some great things to accomplish and won't be held back by anyone (I can tell that from the picture above).

I won't tell you to stop reading the books because, like in the previous comments, the more knowledge the better. But don't put the weight of everyone else's children on your own shoulders. You only need to lose sleep over your own kids and they're doing great.

[sasha]

It makes me (almost) wish I could believe in god so I could tell you I'm praying for you. But I am thinking about your family every day.

[She She]

Hey, lots of love and good thoughts coming your way from Vermont. Now, stop with the Internet surfing.

[Carmi]

I'm praying that there will be more good news than bad in your and Kathryn's future. I'm heartened by how wonderfully you are handling yourselves as parents. Many others would have simply folded.

[elizabeth]

my oldest sister was diagnosed with epilepsy very young. my parents always tried to treat her no differently than the rest of us. is she a bit warped anyway? yes, but no worse than the rest of us really. in her late 30's she joined a study and they found a tumor, removed it and boom, no more epilepsy. about the same time my younger sister (mid-20's at the time) had her second seizure and so THEY consider her to have it and put her on meds. as far as I know she has never had another. lives on her own, travels and does fine.
arm yourself with knowledge but don't start substituting K's situation with those your reading.
my boys (3 and 17) are just fine, but I still want to pull that rock in front of the door, there is too much scary stuff out there some days.

[Tammy from Twinstuff]

I am praying for good news from the doctor's visit. I'm keeping Miss K and your famiy in my thoughts and prayers.

[mommy24x7]

I totally agree with everyone's comments here - it's all about balance: what you read out there with what you know about your own child and your own situation. Hope the appointment went well, and lay off the children's poems and stories and stick to the medical literature, or it'll really scare the crap out of you and break your heart.