On to Plan B...okay, how about Plan C?

It has been said that God does not send us more troubles than we have the strength to bear. I sure wish He didn't have such confidence in me. Madeline's EEG showed multi-focal seizures, not focused locally. She is no longer considered a good candidate for surgery. She will have epilepsy her entire life. Will her learning disabilities continue? worsen? abate? Who knows... The doc wants to introduce a new med: felbatol. It has a slightly jaded history but, according to the doc, those bad cases almost always had some other variable contributing (patient with lupus or some other pre-existing disease). Still, we will of course be monitoring her. And, as is usual with this doc, we'll be introducing the new drug slowly, one-quarter dose for a week followed by a half-dose for a week, followed by three-fourths... The upside is that this drug tends to wake up the patient. Maddy has had to content with sleep issues in class for years and years. She often falls asleep in class. Yes, she sometimes stays up too late, lying in bed for hours in the dark. But there is not always a direct connection with one incident and the other. Rather, it seems that often it is the effort to concentrate, to overcome her disability, that simply exhausts her. Then, too, she could be subconsciously using the sleep as a means of escape. The doctor says that his patients report feeling not only more awake but "better" on this drug--more alert. That is certainly something our daughter needs in school. She can't learn if she is not awake and alert. I'm sure that will also help her moods. She has had many emotional problems--sometimes leading to minor suspensions--which are also impeding her learning and her whole school experience.

I was admittedly hoping that this marathon of coping could finally be headed for an end. That surgery would cure the epilepsy and solve the learning disabilities. Such was not to be the case. This is my little girl and I don't know what to do for her.

The waiting is the worst part

Today we meet with the doctor to hear his prognosis on the data collected during our daughter's 5-day hospital stay. It has been weighing on me almost constantly. I can understand now, or at least empathize, with those people who seek escape in...whatever. I used to think, "yeah, a little break from the world is nice...keeps me from getting too down and burned out". But I was just thinking about the fun in seeing a summer blockbuster movie or having a few beers around the pool. And while I personally am not into any recreational drugs, I could understand folks who would unwind with them on the weekends from time to time. However, I still had disdain for those who "just can't deal with reality, man". I mean, c'mon, escaping is no solution. You know the problem is still going to be there when you sober up, right?

Damn straight it's going to still be there. That's why I'm coming to understand that mindset now. It's like grief for a loved one. The stress/anxiety becomes a part of you. Every breath is just a bit more constricted. Every movement feels just a bit more heavier. God, I don't want to be here. Escape becomes the solution. But not to the real problem, but to the newer more prominent one: the oppressive stress. Escape relieves stress but it does not negate it. The cause is still there. The image that comes to mind, and it's a silly one, is using an umbrella to deflect the stream of water that someone is aiming at you with a hose. The umbrella relieves you from the wetness, but the real problem--the flow of water--remains. That's what one needs to deal with. But it's just so nice to be dry for while.

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The other night I had a dream. I was driving the family along a highway--I-80 toward Auburn, I'd guess--and the car wasn't responding well. I was kind of tired but okay but the steering was getting heavy. I didn't dare let up on the gas because traffic was really clipping along. I remember seeing a Rolls Royce pass us by but it's paint job was really bad--oxidized and blotchy. I pointed it out to the girls; they weren't too impressed. And then I really had to struggle with the steering. I looked down and noticed that the steering wheel had shrunk in diameter to about 8-inches. I remember thinking "Why is this lowrider steering wheel in here? Why would anyone want this in their car? It's too hard to control..." The car wouldn't turn and then we went off the road. We somehow made it across the opposing lanes and went up the hill on the other side. I was screaming; the girls were screaming. We started to roll over...and I woke up.

Pretty clear cut symbolism, I should think. I'm losing control of mine and my family's lives. I'm not properly equipped and not paying attention. The Rolls? Even quality stuff can go to shit if you don't take care of it whether it is a fine car...or a family.

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I don't know what I'm going to do if they can't operate. I'm not too sure I'll be too stable during the days leading up to it if they can. But if they can't; if Maddy has to live the rest of her life with epilepsy (which, when you come down to it, is not really all that bad) and with the resulting learning disabilities (the real shitty part), we're going to have to realign our entire future lives. And, even if they can operate there really is not a guarantee that the learning disabilities will dissipate. That's just my assumption, my hope, my prayer.

Offline longer than expected.

Daughter checked into the hospital for continual EEG observation on Monday. It was expected to be a three day stay, possibly as long as five days. She just came home today. The doctor has not yet seen the data from Wednesday & Thursday where she got a pronounced fearful feeling and eventually threw up--this is her typical siezure nowadays. From what he saw on Monday & Tuesdays data did not show any siezure activity, just some "pre-cursor spikes" while she slept. The potential bad news is that those spikes were multi-focal, meaning from many areas of the brain. If that is the nature of her epilepsy, surgery becomes far less likely a curative. However, those may be secondary spikes...and, as I said, he has yet to review the really pertinent data.

But she is home now and life can return to normal once more. That is until Monday when the wife starts work again. (She was laid off but we just got word that she was re-hired last week.)

it's the little things

Father Jim is a damn good priest.

He is sub-ing for Father Brendan who is away on vacation. Father Jim is a towering Scotsman who teaches at...Oxford?...some prestigous English institute of higher learning and still a damn fine fellow. Missus Koko took our middle girl to see him a week and a half ago for the sacrament of the annointing of the sick (it's not just for Last Rites anymore apparently). And, since I was off today to take her into the hospital for her video observation, I joined Mrs. Koko at the midweek morning Mass. Father Jim presided over it and afterwards as he greeted the folks leaving, he took hold of my hand after shaking it, pulled me back toward him and my wife who was just exiting the church and he asked about our daughter. Just the simple act of remembering her need and her name touched me. But then, with my little one facing potential brain surgery, I've got an emotional hair trigger lately. Heck, I even lit my first candle ever in a Catholic church while we were visiting San Francisco. But then St. Peter & Paul Cathedral is a beautiful church in the heart of the city's Italian district in North Beach. Naturally, my prayers were for my daughter.

Literary Dreams

It's been just over 12 hours since I woke up but I wanted to note an odd series of dreams I had last night. I can only remember the highlights now but I'll do my best to weave them into a coherant narrative.

I was attending a rehearsal for a production of George Bernard Shaw's Pygmalion somewhere up near Lake Tahoe, I believe. Maybe it was an audition. Anyway, a friend/acquaintance who was somehow connected to the production and I went for a walk and found ourselves in the woods. We were set upon by two young thugs who roughed us up a tiny bit. And, while my friend was on the ground, one of the thugs pulled out a pistol and shot him three or four times. Naturally, I ran. I then found myself in nice but not great hotel, kind of like the $120/night places in San Francisco--better than the EconoLodge but not quite Hyatt level. Panicked, I go around trying doors and end up in a room with Janeane Garafalo. She buys my story of the murder in the woods and gives me refuge. We end up watching TV side by side on the couch. Soon we're holding hands and then the TV goes off. I turn to her and she leans in. We kiss, a sweet kiss that soon turns more passionate. My hand moves to her waist and then up inside her t-shirt but she pushes my hand away just as I realize she is not wearing a bra. Held to first base, but that is still so cool cuz I'm kissing Janeane f-ing Garafalo!

Soon after that I woke up--DAMMIT!--it was about 3am so I went back to sleep. Next I dream about seeing a production of GBS's Pygmalion starring some Asian/Pacific Islander guy as Professor Higgins. The dude was good but just odd casting.

Odd that I would dream so much about a particular literary work, no? But what is Shaw's play about? Transformation of a bright but rough young girl who has been cheated by circumstance into the wonderful, desireable, and self-actualized creature she should be. Such is my hope with my daughter Madeline. She is in the hospital right now under 24-hour observation, hooked up to an EEG and under constant video survelliance to more accurately map her siezures. If they can pinpoint the focus of the siezures to a particular point in her brain, as seems likely given that her MRI showed slight scarring in the area wher the previous EEGs indicated the siezure came from, then she is a good candidate for surgery. A prospect that at once inspires and terrifies me. I mean, we're talking brain surgery here. F-ing with the essential organ of being for my daughter. Just the mere contemplation of it brings tears to my eyes. But on the other hand, this procedure holds a very good chance of curing her from her epilepsy and probably aiding the coping of her learning disabilities as a result of that. Oh, what she could become if this shroud of seizures could be lifted from her! I wonder what transformation she would undergo.

Meanwhile, I'm just going to label the friend getting shot and making out with Janeane Garafalo as non sequiter brain dumps. It's just safer that way.

Actually, it could've been worse...

Nearly ten years ago the missus and I did something a little stupid. We bought a brand new minivan. Yes, we knew we'd be losing thousands of dollars in value as soon as we drove off the lot but we wanted a car with no worries, at least for a little while. And it was truly nice to be tooling around in a new car for many, many months. Maybe even a years. But the troubles started coming in. I remember in 1999 or 2000 having the transmission overhauled to the tune of $1900. Ouch. And there's been a serpentine belt that snapped on the way home one dark night. The support arm for the alternator cracked and was about $300 to fix. Then several months ago the passenger door that had been creaking finally gave way. I chronicled that event in my previous blog. Not resolved to keep the expenses down, the ol' red Caravan pulled another rabbit out of her hat.

So I thought it a good idea to make sure she was in good working order before taking my nine year old off to camp 130 miles away. So after recently having it smogged for its DMV registration, I had the oil changed. During this procedure, the mechanic noticed that the PCV filter needed replacing and that the serpentine belt was cracked in several places (this he showed me; it was all too true). Naturally, I had those things taken care of the very next week. Finally last Friday, two days before taking my girl up to camp, I purchased a full set of brand new tires for just under $500. Ouch, but what what a relief. We had been running around on the spare for nearly a month and the remaining tires were nearly all down to the tread warning bar. We were set for the trip.

We get her up to camp near Occidental, CA, with just 15 minutes to spare before the end of registration time--we ran into some unexpected traffic. Get her settled and are on our way about an hour later. As it was just past dinner time we drive over to Bodega for a seafood meal. Unfortunately the bar menu, while cheaper, is far more limited and the oldest daughter likes her shrimp grilled, not breaded and fried. So we opt for the restaurant. It was quite good but not fantastic. The portions were quite large and I just assumed they'd box up the half-a-meal I left behind (pasta primavera w/ salad shrimp added). Nope. I guess some cat was very happy that night.

And then it's back on the road for home. We hit a bit of a delay just as Rte. 12 connects with US-50. It's down to a single lane during some nighttime construction work. After about ten minutes, though we are on our way. But just as we are crossing the great overpass that joins us up with Highway 50, the engine revs up inexplicably and there's no power to the wheels. We are just coasting. Fortunately it is downhill but once momentum is gone we start slowing down. Eventually, I discover that if I turn off the engine and then restart it I can accellerate for about twenty yards before the transmission disconnects again. I hobble to an off ramp and call my insurance's 24-hour line. They say they might reimburse my towing expense but can't be sure because for some reason they could not pull up my policy. It's just after midnight and I decide to deal with it in the morning. The exit we are at is pitch dark save for the glow of the AutoMall sign in the distance so I limp the van to the next exit down. Fortunately, that's the one with about a half dozen fast food joints and diners and about as many motels. The Holiday Inn Express costs more than we have on us (no, we have no credit cards). In order to use my mother-in-laws AmEx card, she'd have to fax them a copy of her driver's license. That's more of a hassle than I'm willing to put her through. But the desk clerk gives us a line on a cheaper place: the Inns of America. That's when I discover that we don't have any reverse as well as any forward gears. I have to push the van out of the parking spot with a bad knee earned over the weekend (see previous post). Actually it only hurts when twisted not during normal pressure, so when the older teen offerst to help, I tell her to stay in the car. We make it down the road in fits and starts and it turns out that with her contribution we scrape together just enough to get us all a room.

It should be a relief, and to a great degree it was. We call my mother-in-law to update her and she agrees to meet us the next morning around 9am.

Sack time. However, my middle daughter gets up about a dozen times that night to the bathroom and my oldest (the one with the cash) ends up getting sick in the middle of the night. Too much stress, seafood, and probably some allergies as well. Fortunately she makes it to the toilet and there's no extra mess which is good because if I smell it, I'm compelled to add my own. But the poor thing, I felt bad for her and would've forced her to accept a hug from ol' dad if I wasn't exhausted.

Next day: Girls seem well, if tired. Ma-in-law shows up promptly as I'm negotiating a tow and locating a transmission repair shop. Breakfast at Denny's. Meet with the tow truck at the motel. Check out and then meet up again at the transmission place. Hand over the van and head on back home. That afternoon the verdict comes in: $2400. If the van were in "good" condition I could maybe get $2200-2500 for it. But I never fixed the door which was going to be $800-$1200. Nope, that price tag was the death knell for Ol' Red. I've started looking into the tax requirements for donating a car to charity. I figure I can claim fair market value at around $800 figuring as I just put $500 worth of tires on it which have less than 200 miles on them. If I had the van home, I'd probably be asking that much. I'll have to collect the documentation.

That night we go looking at new cars. I expressly stated that we would NOT be purchasing a car that evening; we'd wait until the next day. However, we found a 1998 Mercury Villager with just 10,540 miles on it, loaded with extras and kept up very nicely. We bought it putting about half the price down in cash which seriously dipped into our rainy-day fund. But heck, it looked pretty wet outside to me.

My camping daughter has no idea about any of this. We're going to pick her up on Saturday at 9am. Since we'd have to leave home around 5:30am to make it in time and since there's no way we can wake up two teenagers in time to leave then, tomorrow we're going into Santa Rosa to stay the night, just 20 miles or so from my daughter's camp. Then, I'm taking them all to the California Academy of Sciences in San Francisco. It's one of my middle daughter's favorite places and she goes in to the hospital on Monday for observation of her epilepsy. They'll probably have to shave her head. I want her to have at least one good memory from this summer. Which reminds me, tonight we'll have to make the s'mores she was promised whilst her baby sister was at camp.