Mamas Don't Let Your Babies Grow Up to Watch Pokemon

Before I started this post, I merely pulled up a blank box, waiting for my words to crowd it nicely. Before I had a chance to do so, I was struck with the idea to take a walk with my girl to pick up a couple of things at the store.  We spent about an hour out, stopping in the library to peruse, then stopping all along the way to browse through the local craft show downtown.  Humanling even took a photo in what I would call closer to my style of photography and I thought to myself...awesome.  If she can get away from linear perspective at this age, she'll be incredible by mine.

We had a brief chat on the way home regarding the School's Current Common Cold.  I mentioned that perhaps she could just not touch her face at school or wash her hands before she eats.  Suddenly she had this urge to shower as soon as we got home.  I don't mind if she gets a cold here and there.  She needs a few germs.  However, I'd hate for her defenses to be down and seizures to take the offense because of it.  Sneaky things.  They pounce on any weakness.  

We had a visit with her neuro the other week to go over the test results of her EEG.  It has been determined that she has Juvenille Myclonic Epilepsy (JME), so pull up another chair to the table, it's not going anywhere.  It was thought from the onset when she was around five years old that perhaps she may grow out of it.  It looks like this is not going to be the assumed path, but I refuse to stop believing for now.  Her meds (Lamictal) have been increased in increments for now.  So far I don't see too many side effects of that, thankfully.  Maybe more moodiness here and there but then again, what's a teenager without a side of moodiness?

In case you don't feel like hitting the link at the moment, straight off the website is a little info:

Juvenile myoclonic epilepsy (JME) is one of the most common epilepsy syndromes. It accounts for 7% of all cases of epilepsy. The seizures of JME may begin between late childhood and early adulthood, usually around the time of puberty. Fifteen percent of children with childhood absence epilepsy later develop JME. It also is more likely in people who have family members with generalized epilepsy. The intellectual ability of people with JME is the same as that of people in general.

Some people with JME experience seizures that are triggered by flickering light, such as strobe lights at dances, TV, video games, or light shining through trees or reflecting off ocean waves or snow. These are called photosensitive seizures. Occasionally, myoclonic seizures are also provoked by factors such as decision-making or calculations.

So, Great!  7%!  Yes, it's good to be rare.  

The strange part is that no one on either side of the family presents seizures or epilepsy.  It is possible that her father did have some neurological issues but that information is like going through a game of Telephone.  I don't think I'm going to hit the absolute truth on that, and if I did, would it change anything?

The part that really hits home is the photosensitive piece.  Riding in a car with Humanling when the sun is out and flickering through the trees is like texting and driving.  Although she may remember to wear her sunglasses and brim hat, sometimes she doesn't, and neither do I remember to remind her.  She enjoys looking in the rear view mirror and singing to herself, watching her reflection on many drives.  Murphy's law has it that whatever direction I am going in, it's the one where the sun is on her side and in her face.  Therefore, I am constantly looking over at her to be sure that she is not making an offer of her face to the sun.  Which she usually is.  I don't know why this is, I know it isn't possible that she's just being a rebellious teenager.  I think it is more like the charm of those damn Anne Rice vampires.  The sun just has its Come Hither junk going on.  If she gets "trapped" in the glare, she's pretty powerless over it.  If I bark out a "HEY!" she may jolt out of it, mad at me for shouting.  But with hands on the wheel, sometimes that's all I can do.  This is due to the Photosensitive sector of her epilepsy.  More on that Here.  

It turns out that this Photosensitive seizure activity can happen to people in which no epilepsy has ever presented.  Let's remember the Pokemon movie in Japan from 1997.  Check out my awesome copy & paste skillz from Wikipedia on the subject:

The episode is infamous for using visual effects that caused seizures in a substantial number of Japanese viewers, an incident referred to as the "Pokémon Shock" (ポケモンショック Pokémon Shokku^?) by the Japanese press. Six hundred and eighty-five viewers were taken to hospitals; two people remained hospitalized for more than two weeks. Due to this, the episode has not been rebroadcast worldwide. After the shock, the Pokémonanime went into a four month hiatus, and it returned on TV Tokyo in April 1998. Since then, the episode has been parodied and referenced in cultural media, including episodes of South Park and The Simpsons.

Freaky huh?  Imagine being in the theatre with THAT.  Never being exposed to epilepsy before, I know in 1997 if I was in that theater I would have thought terrorists were gassing the place.

Due to my own experience with Humanling's photosensitivity, I now view driving with the sun filtering through the trees in such a reactionary way now that even when she isn't in the car, I am skittish about it.  

So did the new diagnosis help?  It certainly doesn't change what Is.  But it does help to know what is in store, On Paper.  

Reflecting on Projecting Limitations

I'll admit there are plenty of times that I become annoyed with little acts of clumsiness.  I can't tell sometimes if my Humanling is being deliberately careless, if epilepsy is playing some role or (as if!) it's simply an accident.

Her Highest Spill Rates (HSR) are generally whenever I am in a hurry.  Such as before getting her on the school bus.  It's already a challenging job with her in the mornings since that is also her most susceptible time for a seizure.  If she's up for ten minutes without one then we should be set for the day.   Right before writing this post, I myself doused my chin and the stove with coffee.  I thought I'd be swift and finish what was left in the cup.  Since there is a cover on it, I can't really tell.  Swilled and spilled.  It pulls my awareness toward Patience, Danielson.  Indeed, I need to stop assuming there was a worldwide dastardly reason for spills.  

There is an awareness par-TAY going on up in here on a constant basis.  What I'm super aware of is that I probably don't have even one millionth of the capacity of eye opening that I am capable of.  

Humanling is in the 8th grade (ah, good times. My favorite year to be a total eff up and then pull it all together by the end of the year to pass with good grades.  As the guidance counselor said to me back then, "I like you, but I don't trust you."  Wonder what effect that had on my psyche!)
She is into all sorts of things that I wasn't, and I'm my gratefulness is mingling with a bus full of awe.  She came home saying she wanted to run for Class President.  I don't know about folks who are dealing with their own special needs kids, or even epilepsy for that matter, but I can tell you that my first impression is that I thought it was way over her head.  Class President?  PRESIDENT?  You can't keep your binder organized but you want to do this? You can't even stand in sunlight without it immobilizing you if it's in your eyes.   I certainly did not say these things.   Instead, I asked her, "What's your *thing*?  Your cause?  What are you bringing to the table?"  She replied that they should vote for her because she's cute.  

"That's what a beauty contest is for.  You'll have to think of something else."

She spoke with her dad on the phone, and then he talked to me for a bit.  A good course would be for her to be open to polling, and then moving forward with what the Good People of Eighth Grade wanted.  She made her posters and hung them up.  

Meantime, I was doing some weighing of my thoughts and what was right or fair.  It seems that I had already doubted her from the moment that she mentioned she wanted to run.  It seems that with her epilepsy, my instincts, whether I say anything or not, is to think about what she Can't do, which is hardly fair.  I thought to myself that she needs this experience.  If anyone handed my current list of job responsibilities to me and I hadn't done the job, I'd probably shy away from it and go be a waitress.  I had to jump in and learn.  I don't have a college degree within a corporation where you usually won't get hired without one.  I was lucky to scoot through back in 1997 and prove myself as a temp before being hired in 1999.  

So it is possible here, to just let her follow her own path.  Sure, run for Class President.  She has gotten now the experience of oral presentation by writing and delivering a speech (something at the age of 13 would have just sent me for a shovel in which to dig a grave for myself).  She has gotten to think up a just 'cause' for her classmates.  She's gotten to design and hang posters, being immersed in the experience of it all.  I have zero experience in this.  She has superseded me on this one and I am really proud of her. 

Putting limitations on her creates the elephant with the rope syndrome.  When elephants are young and being trained, a rope is tied to their foot with the other end being tied to something immovable so that they are securely tethered.  Eventually they associate this rope with being immobilized so that all you need do, is tie a rope to their foot and leave the other end loose.  They believe they can't go anywhere, and so they won't. 

I have no idea yet of the outcome, but am amazed that she tried.  Instilling a sense of motivation and nurturing it will do wonders for her, as will dealing with disappointment and failure, as will becoming Class President.  

Tongue, it's Time for your Encore

The power of petitioning the universe. 

I’m not terribly superstitious.  Unless you put shoes on a table.  Or walk past money and sniff at it as you pass because it’s “only a penny”.  (To me this signifies telling the universe that you don’t care or appreciate any flow of money it sends your way).  Or say things out loud, including discussions about those things that you Don’t Want to happen.  It’s bad enough that your mind went there, why put form to it and allow it to float from your lips like a helium balloon….up and away somewhere higher to the ears of the All.

My mother asked me last Friday how Miss Humanling was doing with her seizures.  I replied that she’d been doing pretty good this summer.  She hadn’t had one in too long…or too many.  She had one the night of the carnival.  But other than that, ok for the most part. 

Cue Saturday morning before 7am.  I don’t know how I wake up, I just wake up right before her seizure starts.  It always looks so stressful on the body.  Everything is as tense as it can get.  When I saw blood drip out of her mouth I knew she’d have to deal with the sore tongue for a few days. 

Later that day she seemed more “blinky” as I call it…more “out there”.  Warning signs.  Even though it was nearly 6:30pm, I told her she should take a nap when we were done with the laundermat.  I usually don’t advocate late naps for her because I don’t need her more awake than me at midnight.

So she put on her dandy purple eye mask, only too happy to be granted a free pass to a nap!  And fell asleep.  That’s when I allowed the new little kitty out to romp around.  She eventually made her way onto where my daughter was sleeping and bounced all over her, waking her up.  With the eye mask on I couldn’t detect if it was going to end up giving her a seizure but didn’t really think much of it since she’d just fallen asleep not long before. 

I decided to wash dishes because sometimes, that’s just how we pass our time around here.  Throwing the water on, I waited for it to heat up and then heard noise from the other room…I peeked and saw her in a seizure, in the recliner chair.  Leaving the water on, I ran in to make sure she would be safe from falling out of the chair.  Her body seemed even more tense than it had in other seizures.  And as I thought it to myself….don’t let her bite her tongue again, since it was raw from the morning, there was no avoiding it.  Tongue mash.  Lips blue.  The blue lips don’t happen too often.  Her very first seizure produced such an effect, which is really horrifying to see.  I watched to see that she was breathing okay, being grateful that breathing is automatic. 

Had I mentioned that the sink has been clogged?  Waiting for the end of the seizure and trying to count time, I wondered outside of myself if the water was going to overflow and add further to this precious moment.

She woke up later on, of course unawares of the seizure.  Unfortunately, her tongue was so sore and swollen that now she earned a Lisp of Honor that she’d carry for a few days.  I feel so bad when this stuff happens.  Her tongue hurts for days, making it tough for her eat or not sound drunk at times when she speaks. 

She doesn’t seem to notice the change in speech, which is good.  And this gives her an excuse to get lots and lots of sympathy from mama (which usually results in fun or yummy things!)

Yours, Mine and Ours

For some reason, whenever I see someone in a movie have a seizure, it makes me very sad.  Not just "Oh that sucks" sad.  But "Oh....that could be my child" sad.  And then because I understand more than what meets the eye because it's so close to me, it makes it tough sometimes to even look at the photos they post on the epilepsy websites of people.  You see real people...(yes, as opposed to the titanium people they normally picture on there).  You can look into their eyes, which are usually smiling along with their mouths.  And end up imagining what they go through...just like your own child.  There is a good moment, there they are smiling.  But there is this thread that weaves through them, each one of them, to your own child.  It makes me want to hug every single one - and their mother. 


I wonder if other parents of epileptic children, sprouts or oaks, share this with me. 

The Invitation of Meltdowns

Effing birthday invitations.  They are rare around here so Humanling is ecstatic to have gotten one from her friend that she hasn't seen in forever.  The festivities will include swimming pool, trampoline and most importantly....CUPCAKES!  It is a dual party for a brother and sister who's birthdays coincide in the same period of time.  


Even though we've discussed it more times than Mercury has rotated the sun for all of time thus far, and my consensus is that a sleep over is not safe, her enthusiasm burst from all of her veins....
"Well???? CAN I GO???"  
"Yes, you can go."
"Can I sleep over?"
"No, I don't think it's safe."


{exits stage left and goes into bedroom, most likely with the door shut}


Eventually, because in an endearing way, puppies and kids, they forgive so easily, and we don't have another person for her to play off of here so it's the end of the line for strategy, she comes back out.  Hugs me, hands me the invitation.  Walks off and slams her door.  Are we upset or not?  Comes back out.  says she is upset (glad that's settled!).  I explain the good....but you can go to the party, you can swim, be on the trampoline, eat the cupcakes and be with your friend til late.  Then you have to come home.  The part about sleeping over and more than likely having a seizure (probably due to excitement and diet that day) in front of a gaggle of 13 year olds doesn't seem to phase her.  She has not ever seen a seizure.  


This is something that I've thought about for awhile now.  She's old enough I think.  If she didn't have epilepsy, she might see someone else in life have a seizure.  So, in order to show her the importance and mechanics of a seizure I wondered if finding one online might be suitable.  Her neurologist seemed horrified by the idea.  Well I'm horrified that the neurologist doesn't think one's lack of water consumption affects seizures.  So her opinion almost doesn't count.  Why expose her is the neuro's take.  Well, she blanks our during a seizure obviously.  Therefore, she doesn't understand why I am a helicopter parent with so many situations.  She doesn't realize anything except that once in awhile her take home gifts from Seizureville are a headache or a bitten up tongue.  She just has no memory of these events and is under the impression that I've been schooled in the Mom From Hell School of Hovering.


I'd bet milk chocolate on the fact that when I finally get her home that night, she will be happy to be in a quiet, low key situation where she can just relax and go to sleep and not remember a possible seizure around me instead of a bunch of kids who will make it feel like pressure to stay awake all night.  I'd bet dark chocolate on it but there's a minuscule chance that I'll lose.  

Wearing a Gallagher Bib

I think with any affliction or illness, just because you've been around it long enough does not mean you've honed  your common sense in the fine art of Cause and Effect. 


As I repeat (ad nauseum) that Humanling shouldn't be left to get up alone in the morning (just in case) sometimes  it happens.  There have been many a morning she can get up on her own and may need a small adjustment period instead of the Family Walk up and down the hallway.  I usually can't differentiate why some mornings work and some don't, although being able to sleep naturally without being woken up seems to be one factor.  Meaning, get a freeze gun, put the whole neighborhood, sky, early birds preying on the worm, car horns, my animals, sneezes, and thunder on hold, until she can wake up on her own.  This makes school days nearly unbearable for me.  Getting her on time to the bus stop is a 46% chance event with me driving the rest of the time.  If she has a seizure while I'm trying to get her to wake up, then the reset button is hit and I have to let her sleep it off until I can get her to school and me to work.  


I haven't actually seen her have a seizure in about a month (yay!) but I am not petitioning the universe for one to shake things up (no pun intended).  (Really).  She says that she had one at her dad's but if she can't feel an arm jerk when I'm looking at what appears to be an awake person, then that's a world I don't make the height requirement on.  I'll never get inside her head to know what she actually feels.  


I was doing a great job of tiptoeing around the house this morning to get the morning chores down.  I even wore socks as part of my Superhero ensemble of Shhhhh Mama.  


While I was in the kitchen, I suddenly heard a thump (which always puts the heebies into my heart) and then she strolled into the kitchen.  This isn't trustworthy though.  She appears fine.  Only really, I have to give it time.   That's why she fell that one morning...I paid my full subscription to False Security Hourly.  I watched her for a moment or so and then ducked into the bathroom for less than a minute as I heard her open the fridge door, get a glass and pour her rice milk.  Then the glass hit the floor.  


She was fine.  She had a case of the Arm Jerks.  She went to drink and I'm assuming the glass fell out of her hand.  I asked her how it hit the floor and she said she didn't know what happened.  


Sigh.  She's fine the rest of the day (unless the sun nabs her through the trees on a drive in the car).  It's just that waking up is so criminal to her system for some reason.  I haven't found anyone who can really explain it to me.  To keep her system engaged, I had her attempt to clean up the mess (try that with your kids, folks!  Tell them it's for their sensory good to Keep them "engaged"!)  


I explained to her that in the mornings, she has to wait for the jerks to stop (you know, those jerks that she doesn't even know that she has) before she can try to hold a glass of liquid.  And all before my coffee!  The humanity!

The Slumber Party Dilemma

The joys of getting to sleep a little later in the summertime can't be appreciated enough!  Seeing as my girl's seizures can happen as she is waking up, the more sleep she can get, the better.  I'm having to do slightly less walking her around when she first wakes up, although I still have to do it.  I'm pretty sure that I remember her neurologist telling me that she's never heard of stopping a seizure at all.  I don't claim to stop a seizure.  However, I can see the signs of one coming...the arm jerks, the head twitches.  If I can get her on her feet and give her brain stimulation that it has to deal with, this method has worked for us 99% of the time.  Now that's if she can stand, which means that she hasn't gone into the seizure yet.  If I leave her to lie there on her own, she will have one.  


This causes me to go back and forth on the issue of sleeping next to her.  I'm currently single and Brad Pitt has not requested our special night alone.  Allowing her to sleep next to me ensures that Parent Ear turns into Parent Sensory.  I can feel her moving and can feel a twitch generally.  


What I can't do though is explain to her what she is going through.  She turns into a pint sized Hulk whenever I get her up on her feet.  Too tired to deal she gets all no nonsense CEO on me. I'd be lying if I said it didn't get to me.  But I realize that she doesn't really understand what's up.  She has never seen a seizure.  She's as present as a sewer grate when it happens, so how could she?  While her arms are jerking and I have her still somewhat coherent and work on bringing her out 100%, I'll ask her...did you feel that?  Your arms just jerked....did you feel that?  And the answer is pretty scary...."no".  


Her speech during this time sounds like she needs a breathalyzer.  She slurs and drops sentences.  So that leads me to the annual jackhammer event of the year: a birthday party for one of her friends, that involves a sleepover.  My Hammeress hardly ever gets to enjoy what most kids and parents take for granted.  I slept over so many houses and hosted mine in return as a kid (I happened to be friends with a bed wetter...and believe it or not, it didn't dampen my outlook on sleepovers!  Get it??)  In our case, sleepovers become a bone of contention.  She doesn't have it like I did.  Once we tell parents about the epilepsy, you can see the worry and nerves starting to cinder on the spot.  I don't blame them.  If it were me, and I didn't have any experience with epilepsy, I wouldn't feel too bad about expressing my inadequacies to do with handling a seizure.  But she thinks of herself as a perfectly normal teen.  One that can just sleep at someone else's house.  


She needs sleep.  Sleepovers alone and with a birthday party stack up against her.  First, the excitement alone can cause a seizure.  Next, lack of sleep of course!  It's a sleep over but not for sleep!  Being in a strange house, eating too much junk food are also big contributors to set up for a seizure.  Let's not forget the stigma attached to kids if they have a seizure in front of other kids.  This may or may not happen but if kids are the way that they were when I was child, it's inevitable.  


So while I have set her up for a most probable "No", I have not completely given my ruling on this.  Many times we can put her epilepsy one row behind the forefront of our minds. At the same time however, conditions we need to set are always one thought away.