Saturday.  A day to sleep in finally.  I was fooled though - I woke up at 7:20ish to my parent ear alerting me to Seizure sounds.  I ran into the other room to be sure that Humanling wasn't hanging off the bed - she is in a loft bed that was a gift to her and once was half hanging off during a seizure.  She wasn't.  But I usually take the blankets off her and make sure that she can't get twisted up in anything.  I don't know how other parents handle seizures, but I talk to my girl during.  I tell her it's going to be ok.  I tell her that I'm there, that I love her.  I stroke her hair, her legs, her arms and try to be comforting.  Maybe it is comforting to me more than it would be for her.  But I follow the rule of not knowing what the subconscious hears, so better to err on the side of positive statements.  I try to keep the "Jesus Christs!" under control.  


When the seizure was winding down, I noticed her thumb stuck in the collar of her shirt.  I hoped that she hadn't sprained it or anything.  I have a great respect for the strength of the body during a seizure.  It didn't appear swollen.  I usually re-position her body afterwards as well.  Make sure her spine isn't twisted, her neck looks like it's in a comfortable position, her arms in a natural position.  I had a guest on my show once (Scorpion Equinox) who cured her own epilepsy.  She had told me that the neck needs to be massaged because it holds a great amount of stress and tension there from seizures.  That made perfect sense to me.  Sometimes I actually remember to do this for her.  


When she got up awhile later and came into where I was, I let her know that she had a seizure, which is what I normally do.  She said that she already knew.  I asked how, because I'm always curious to know what the answer will be.  Sometimes the sore tongue is a dead giveaway.  Today it had nothing to do with her tongue.  She said she felt it.  I asked her further how did she feel it - what did it feel like?  It's rare that she is conscious enough to feel it.  She said she felt the shaking.  Did it hurt?  No, it didn't hurt.  


Well thank God for small favors.  It doesn't hurt.  Unless she bites her tongue of course....then later on she has a hard time with eating for a day or so.  


For the rest of the day she acts normal.  Although on a school day, when we're trying to get ready to get out of the house early and she has a seizure, she seems to be in a bad mood.  


I find that immediately I start analyzing the day before.  Did she have dyes?  Too much sugar?  Not enough water?  Too much activity? Excitement?  Gluten? What happened?  How can I actually even know?  


But I bet if she had been sleeping with me, it may not have happened.


Epilepsy in this house involves a lot of woulda, coulda, shoulda moments.  Although none of the projected scenarios can be founded.  


The rest of her day was fairly normal.  She played a song for me on her keyboard that I had no idea that she even knew how to play....without the sheet music.  She even dressed up in concert type clothing.  She finished her dinner before me tonight, ran to get dressed and played Christmas songs for me on the keyboard as I slowly, extra slowly, finished my dinner,.  


At some point during the day she showed me how she could even play music with her toes.  


But she went to bed on her own, as she usually does.  She tries to stay up slightly later than usual but is one of those children that is affected by time.  Her body tells her that she can't stay up any later and against what she really wants to do, she has to give in.  


I am grateful that although she has epilepsy, she doesn't at this time, have it any worse.  

No Calls Please, I'm Frolicking

The first words out of Humanling's mouth when I told her it was time to get out of bed this morning were, "I'm busy frolicking."  Which unless the Emperor cannot see 'frolicking', she clearly was not.


Getting her ready in the mornings for school can put a sense of dread into waking up once the birds start their song.  With the windows open, the birds sound beautiful, but rather loud.  And I can't have loud noises waking her up - especially in the wee early hours of dawn.  So I close windows.  Then the cat decides that 4am is the norm for deuce dropping and her claws in the litter box echo down the hall, sounding like an angry teacher dashing punishment across a chalk board.


I am usually at my most tired during the dawn hours and am hoping to sleep soundly for another hour or two.  But it is also here that Parent Ear has to perk up more than usual and listen for any tell tale signs of a seizure happening.  


Sometimes I jump out of bed only to realize that the noise I heard was one of the guinea pigs getting water out of their bottle.  I fear waking her up with all my mini fire drills, popping out of my bed every 20 minutes to check for sources of sound.


With Humanling's epilepsy also comes a more needy learning curve.  She has an IEP at school to protect her from all kinds of academic unfairness.  She is to get more time to take tests, she gets physical and occupational therapy and also a locker with a key instead of a combo. Special Ed classes don't look anything like they did when I was younger.  I'm not sure if the stigma sticks but I don't hear too much about it.  Then again, I don't have the pipeline to the lunch table when kids might have some opinions about special ed kids.  


Recently Humanling completed a book report.  This morning she was fretting that she might have to read it out loud and what if someone asked a question?  I asked her what was wrong with that....she read the book, just answer it as best as she can.  And then she said "But I'm not a good listener".  And it's true....she really isn't.  I don't know if it's a good thing that she knows it.  I gave her one of those moment pep talks about just listening closely to what a person is saying.  


A frequent worry for me is how other kids perceive her.  She was in a talent show this past Spring and sang a song from High School Musical.  Her friends were insane with the clapping and various bouts of "Whoooo!".   So it seems like the kids in her school are not the bullying ogres of my day in junior high....but then again, they hardly wear the t-shirt stating that they plan to give your kid a swirlie when no one's looking.


There is a class trip to Washington DC next year....you know the one that most of us go on at some point.  Mine was in 5th grade.  Theirs is in 8th.  She's already asked me in all excitement if she can go.  And this is where the dilemma comes in.  I tried to gently tell her that she might not be able to go.  What if she has seizures on the bus in front of her friends?  What if she gets bus sick because they stop for the degenerative dollar menu at McDonalds?  We're vegetarian.  She has stomach aches on a regular basis.  


I'm terrified that if she ever has a seizure in front of her friends, they will either imitate and make fun of her behind her back or - another equally great option - someone will be traumatized by the sight of it.  What if they are afraid of her after that?  What if whenever she walks by they make electrocution movements?  I can't punch children.  And it's illegal to hire Scut Farkus to do it for me.  


Besides that, a solution of understanding is what would help.  And maybe I don't give these smiling cherubs enough credit.  We usually don't.  

The Wires Come Off

It'd be great to get to writing without distraction since it is 9:30pm.  But my willful child has decided to meander out here, her face all screwed up trying to think hard of an excuse as to why she needs to be out of bed.  This is a normal occurrence here in this house.  Now I can't say for sure but it seems that even though her first big ticket seizure happened with me next to her in the bed, lately it seems like she is not having them if she is next to me.  Some mornings if I hear her stirring before the Seizure Witching Hour, I'll ask her to come lie down with me.  She's been fine with that set up. 


But now that I've said it out loud, I've probably inadvertently petitioned the universe to test the theory.


And naturally, since she was all hooked up with her 24 hour EEG all night, there wasn't a seizure to be found.  They are in fear of recordings...similar to how Native Americans believed the soul would be captured in a photograph.  


On the way down, the Humanling insisted on doing the usual music bargaining - making sure to start before we even backed up to leave the driveway.  Miranda Cosgrove.  Seeing that I have heard these songs over and over again, I counter offered - ONE song.  And it can't be dreary.  


She got one song.  And it WAS dreary.  I cringed and then noticed that my left foot was tapping the floor to the dreariness of the beat.


She also mentioned to me what her costume is going to be for Halloween this year - a female prisoner.  Because that's the theme in the Lady Gaga "Telephone" video.  Great.  How about a giant padlock instead to keep you in your room on Halloween?  


We were late getting out the door to have the wires removed and the woman removing them was almost fully direct in verbally spanking us.  Almost.  She more or less complained loudly, letting us know that this could really alter the orbits of the universe.  


Seven minutes later we were outta there!  


So she had a two day hall pass from school.  And spent a lot of time today making up for not being on the laptop yesterday.  


We played more Junior Monopoly tonight and ended up in a deadlock.  I played Eddie Rabbitt's "I love a Rainy Night" for her and she seemed to like it.  So I upped the ante to "Footloose" by Kenny Loggins.  I don't know how the two are related but in my head it's a natural progression.


For now she's gotten her way (sort of).  She is laying down on my bed under the condition that if she was not sleeping within 10 minutes of her head touching the pillow, she is sent back to her bed, no questions and no bargaining.  It worked.  

Pull up with some Banana Bread for the Backstory

I will be super surprised if I can get through three sentences before this kid gets out of bed, finding that she is one hug devoid of going to sleep comfortably.  My Humanling is thirteen and tonight is attempting to sleep with the equivalent of five packages of Twizzlers, all glued together, attached to her head.  Today is the 24 hour EEG that she has done yearly.  It looks terribly uncomfortable to try and sleep with.  

This is the first year that she seems super self-conscious on the drive home.  In her mind, Justin Bieber was in every passing car, guffawing at the wrappings around her head that hold the wires securely.  I swore that I took back roads.  But somehow, Justin knows such roads in my small town.

Humanling's seizures started out early on, maybe when she was four years old.  Only back then I thought we had the cereal prize equivalent of seizures....they were petit mals.  Not too bad, definitely not enough to scare me.  Probably one of the only ways we figured out that she needed a neurologist was because she would drop sentences and then wouldn't go back to pick up where she left off.  As if it never existed. We also joked that she was a vampire since the sun seemed to bother her.  So she was put on Zarontin.  For years.  Eventually, Lamictal (Lamotrigine) was added.  

We went on like this for years.  I read forums, and played with diet.  Humanling is already a lifelong vegetarian.  Could I have brought this on with diet?  The neurologist emphatically states no, although I do believe diet can have a say in things.  So we checked for sensitivies....gluten, dairy, peanut, the works.  We both tested positive for gluten and dairy, so I tried a whole alchemy of foods to substitute.  She would have raw goat milk mixed with heavy cream and the most simple chocolate syrup for flavor that I could find.  She ended up being a social pariah in school when it came to lunches or parties.  

Being a single parent, she would sleep with me often.  One morning on a weekend when she was about nine, I woke up to her in a full blown convulsive seizure.  She had hit her head earlier in the week hard enough to warrant a doctor's visit.  They said she was fine.  Most people have a tiny freak out inside when they see their first seizure.  Especially if it is your child.  

And thus was born a brand new fear.  Now they weren't benign, cute little petit mal seizures (which of course come with their own damage) but now who knew when the next one would strike.  I couldn't sleep for weeks.  

Eventually though, as with many diagnoses, we get used to it and learn to live with it as best as we can.

As it turns out, Humanling has seizures that creep up on her as she is waking up.  This could be from a nap, from something suddenly waking her up in the middle of the night - such as noise or most usual, in the form of showing up in what I've dubbed her Witching Hour...between 5 and 6:30am.  

They also occur in car rides if the sun is flickering through the trees as we pass.  But these are, so far, the only two conditions in which to induce a seizure.

So there are baby shades in the car on the windows and she wears sunglasses and a brimmed hat.  Hahahah....yeah, ok.  That's what she's supposed to do.  That's why the baby shades are there now....for the frequent forgetting of her hat and glasses.  

So still, I am lucky for now in the sense that they are predictable.  For now.  

So what do we do for a day where she can't use a cordless phone, cell or get near a wireless laptop?  

She popped open a San Pelligreno, kicked back in a chair and played her DSi for a bit.  

Then there was the fine art of Die Balancing:

Then we moved on to creating a banana/blueberry bread that I've mean meaning to try.  She stirs, I measure.   She licks the spoon.

And voila....this the the BEST smelling banana bread I have ever known.  Too bad we were both too full from dinner to try it just yet.  But I can vouch for the scent!

Now that I look at it again though, I think I'll slither into the other room and give it a taste!  

Tomorrow morning she has the wires and bandages removed.  Then it will be a long, hot, glue melting shower for her.  And another freebie from school.  

Now she sleeps in the other room as Coyote Oldman plays on her CD player.  I usually throw something in at night to block all other noise if possible.  I'm going to go try that bread now!