You Get An 'A' in Hitting my Funny Bone!

One in 26 may develop epilepsy in their lifetime.  My work from home day, complete with hot coffee and a yummy croissant stuffed with an acre of cream cheese....heavenly.  I had Morning Joe on as I usually do.  And then I heard them talking about epilepsy, which of course had me turn around to pay attention.


Susan Axelrod was on talking about the latest news dealing with this disorder.  A parent can't help but cry when another parent opens their heart about their epileptic child.  In this case, that would be Mike Barnicle who is also on Morning Joe.  It is amazing how many people have this disorder and it seems that there is a giant hush over it.  I suppose it isn't something we exactly wear on our wrists (Oh wait! We do!  Humanling has a fabulous epilepsy bracelet!).  But in general it feels to me to be a more quiet affliction.  One that people don't always want to admit to dealing with.  


I worked with a man recently who was temporarily stationed with us at work.  I was training him and therefore sat with him all day long.  You get to know a lot about a person in this way.  I mentioned my daughter's epilepsy and he said to me, "Only because you mentioned it, I will share with you that I also have epilepsy.  But I don't want anyone else to know."  His seizures were more petit-mal in nature and he said that he could control them in such a way as to induce pleasurable euphoric effects - especially when listening to music.  We would trade music back and forth daily for awhile - a Song of the Day to introduce each other to new things.  


But it was obvious that there was something 'different' about him.  And everyone else noticed.  It would be mentioned that he didn't seem to be "all there".  Only I knew about his disorder, and I felt bad for him.  How people viewed him really haunts me.  This is how people may view my child someday....or now even.  She isn't stellar in school.  In fact, when I see people post their kids getting awards for honors or sports or whatever activity, I realize that if they had an award for the child who tried really hard to not do any work, Humanling would have a wall dedicated to them.  I have and am still learning to accept what is....and her perfection in who she is, not her perfection in standardized tests.  


She doesn't understand schoolwork quite as easily as her teacher this year would like her to.  She feels that her teacher actually doesn't like her, and to be honest from what I've seen, I can't say that I think much differently.  She is in special ed....but will be integrated into the mainstream...the faster pace....next year.  


She learns things but sometimes she has unlearned them within a day. Especially with math.  Sometimes I wonder if it has anything to do with the brain's memory due to her condition.  She used to have petit-mals herself, and still gets them in the sunlight.   Her teacher wasn't very sympathetic.


And so it's a constant guessing game.  Is it the meds?  The disorder?  The teacher?  My child? Yet she will learn something if she is obsessed with it.  The things it seems she has learned the most may really just be the things she learns from me.  We share a sense of humour, although hers will blossom into the R versions later on.  I try to grab every teaching moment that I can.


Case in point: She says things about walking around outside alone.  My solution:  To bring up Etan Patz.  So I have a dramatic flair when I'm making a point!


She may not always be great in school but she always manages to make me laugh on a daily basis.  I hear some pretty zany things from that mouth of hers and while other people may be grasping for the punch line, I am beaming with pride, that she is perfecting the trait of specialized humour, that my dad passed to me.  

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!