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.

Institute of Medicine Report Highlight: By the Numbers

65 million…

Individuals in the world have epilepsy

33 million…

The population of Canada.

54 million…

The population of France.

150,000…

New cases of epilepsy in the United States every year.

1 in 10,000…

Newly diagnosed epilepsy patients that will die from sudden unexpected death in epilepsy (SUDEP).

38…

Drugs that are available for epilepsy use world-wide.

7th…

The rank that epilepsy merits on the global burden of mental health, neurological and substance use disorders worldwide after Alzheimer’s, schizophrenia, and depression and alcohol use; but ahead of migraine, panic disorder, insomnia, post-traumatic stress, Parkinson’s disease, and multiple sclerosis.

2…

Number of antiepileptic drugs that needs to be tried and failed in order to be considered drug resistant to epilepsy.

1…

is the number of daytime seizures needed to trigger driving restrictions in every state in the U.S.

32…

days is the average waiting time for a new patient to see an epilepsy specialist.

25…

days waiting time on average for an inpatient evaluation to an epilepsy monitoring unit in the US.

166…

Number of epilepsy centers in the United States.

1 in every 26

Americans will develop epilepsy over the course of their lifetime.

by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com
Last Reviewed: 6/20/2012

Link: Click Here

Can You Level Up While Bleeding?

It seems like a comet's revolution since my Humanling had her last seizure.  In our house the revolution time frame is tweaked just a tad.  But if she goes to this Saturday without a seizure, it will be three weeks I believe.  That's a long stretch for us.  With school being out and she not having to feel the wrath of her dastardly Not Special at all Ed teacher, she can be more relaxed and who knows, maybe that lends a hand.  She also does not have to wake up quite as early.


I don't know if I've mentioned but Humanling showed me this thing on her head back in December.  She is the master of obtaining "things" on her skin or weird symptoms of some kind that lie across the border of 'iffy' for a doctor's attention. The kind where if you go to the doctor's office for it, you aren't rushing for an appointment for fear of looking like a hyper insurance spending dolt.  The kind of things where you coolly tell the receptionist, "Three months from now?  Yeeeeaaaahhhh.  That's just fine."  But this .... growth (ew...the word is even ominous) was on her scalp. And as the proud owner of a child with issues that affect the brain, I don't want anything except hair on her scalp.  I don't need extra riddles and puzzles going on up there. It was taunting her daily so that her little talons were tearing it up at night.  After she got a hold of it, it was an angry red and swollen mass, way overdressed for this party.


I think I recall her pediatrician saying it was eczema or something of that ilk and recommending I see a dermatologist.  Who recommended what he thought it probably was, but wanted us to try a steroid cream for about a month first.  I freaked over the S word but was bolted back down to the ground with doctor speak.  He mentioned the amount she was getting was so small (but it's near her brain!) and that it wasn't the home run hitting type.  Reluctantly I tried it and it didn't do anything except make Herman the Growth, less angry looking.


Ah, so we found out that Herman is actually from the Nevus Sebaceous species.  According to Wikipedia, it is a "congenital, hairless plaque that typically occurs on the face or scalp.  Likely it was there since birth.  But once those precious beings of ours hit puberty, Herman also hits puberty and grows larger.  


The downside to this visitor is that it can overstay its welcome and turn on its owner.  Nevus can Jekyll and Hyde right into sebaceous carcinoma. Or that icky C word, skin cancer.  Although I'm told it's a more benign type.  My mantra again....but it's near the brain!!!  No cancer thank you, will be ok at all, nevermind near her brain.  I'm not sure about other moms of Eppies but I am overprotective of her head.  A snowflake is lucky I don't shoot it for landing on her head.  


So today was our appointment with the plastic surgeon to have it removed.  She was a great sport and played her DSi throughout.  But don't let the photo fool you. The needle they used to anesthetize her head was shiver worthy.  She is usually the kid who will watch blood being drawn from her arm.  Today however, she was obviously in a lot of pain.  The removal part did not hurt, thankfully.  But her shirt was somewhat ruined by blood (although they tried all the laundry tricks immediately with peroxide).  The doctor laughed when I said to her, "Your hair is a beautiful shade of red now!"  It was all blood.  They cleaned her up as best as could be done and nine staples later, we were outta there!  


We very much could have had her knocked out.  But....I don't like the thought of putting that type of anesthesia in her body - she's just a bean pole.  And a bean pole with epilepsy.  So we went for a local.


There are risks with the local as well.... arrhythmia and seizures.  Seizures show up enough that I'm used to them.  I don't want to learn how to deal with arrhythmia in a child. I asked if this is the type of problem that shows up a lot or if it happened in the history of the procedure somewhere and they have to cover bases by telling me.  It turned out to be the latter.  


She's pretty sore and it looks really tender.  I'm left with the thought of wow, I saw a big hole in her head....should I have taken a picture?  There won't be another moment like that!  I have no idea how any doctor looks at that and has a normal life when he clocks out.


Moving over to the research side, I question many things to see if they have anything to do with epilepsy.  Typing in Nevus Sebaceous and Epilepsy to my buddy Google,  yields minimal but informative results.  DermNet NZ says "Neurological disorders are rare, but occasionally occur in children with very large sebaceous naevi. Epileptic seizures are the most common problem."  


Why did I have to Google that to find this out?  No doctor is telling me about it and I'll bet that I will be two for two when I inform her neurologist of this.  (The plastic surgeon did not seem to be aware of it).    My question is now of the chicken or egg variety....does this growth cause the epilepsy?  Is it a byproduct?  Will removing it better a cure?  That last sentence should have a few rainbows, unicorns and Channing Tatum scrubbing my dishes.  It's a little far fetched, I know.  But I do have to wonder.  


Say Goodnight, Herman.  Goodnight Herman.

Jack From State Farm...Coming to a Big Brother Clinic Near You

Next to me lies the sleeping body who's inhabitant is desperately hot from this summer heat. Blech.  We're only used to so many of these a year.  Taking it's cue from yesterday, it is over 95 degrees today.  I worry more about Miss Humanling in the heat because it seems that the heat can be a biotch with epilepsy. 


We've had a good week or two, which is always much appreciated (thank you God, Universe, Aliens, Starlight!)  That's not to say that she hasn't woken up vulnerable....I've just been able to kick her tiny butt into gear and get her on her feet before anything major happens.  Thankfully most of the time she listens.  (Did I really say that?)


She got her yearbook the other day and was showing me all the kids who were in this club or that club.  She is in none.  She doesn't seem to have the stamina to be in a club for too long but every year we do like Frosty the Snowman...."HAP-PY BIRTH-DAY!" and start all over again.  Sometimes I feel bad that I'm the closest buddy she seems to have.  Like we're going to be that old mother and daughter couple that walk down Main Street with bags or a cart.  Zombie expressions on our face and gibberish falling out of our mouths and staining our shirts.  Not even a good cruise can cure that.


I chose the most important time to talk to her about well...creating room for other people in her life.  I mentioned how I have always had a best friend (or two!) and how we did EVERYTHING together.  I left out the prank phone calls, experimental smoking, meeting guys at the mall that we followed to an intimate party of four and the time that we took two strange guys into our car right after a Ratt concert and then drove around the whole time looking for their car without actually getting to have any fun with them.  


I told her that there are things she can only learn from girls her own age.  That it's so important to have friends - a group of friends.  But I'll settle for one best friend for her.  It seems that everytime she reaches out her knighting wand, she chooses another child that ends up telling whoopers or having a home life that involves DCYS.  It's like I want to put an ad in the paper and  set her up.  I don't know if she is just prone to enjoying solitude and the company of such a kick ass cool mom like me, or if she comes off as strange to those around her.  Tough with epilepsy...sometimes you just can't tell.  Is it the personality? The medicine?  Do people with epilepsy view the world in such a way that others can't relate, due to any difference in cognitive abilities?  She is an odd child, after all.  But I am not really so typical either.  So maybe she just is a chip off the ol' mama and the kids in school aren't ready for that.  Or maybe they are and she is just not ready for acceptance.  


The factors make me dizzy.  But in telling her that I'd love her to get new friends in the coming year, she replied, "Like Jack from Statefarm?"   Yes, like Jack from Statefarm.  (See commercial above).  "She sounds hideous."


There certainly are reach outs though by others.  Such as when she performed in the Talent Show and took the stage alone to sing "Breaking Free" from High School Musical.  She received a standing ovation.  Or today...a fabulous break.  She didn't know it but during the award ceremony this morning, she was getting an award for steppin' it up for Chorus.  Her chorus teacher called me yesterday to let me know so that I could show up and let her die of embarrassment.  Front row baby....I'd be the one with the pom poms and t-shirt with her face on it.  YEAH!!!


But the reality of the end result of the continuous talk about seeking out good friends came down to her citing a friend she had years ago who barely calls her back, ever.  "I like Jordan and she's my friend.  NOW GIVE ME FIFTY PUSHUPS!"

Whoops

Sometimes it is simply amazing how that kid's mind works.  There are times where she is excited to get up and go to school and on those days, there isn't a problem in sight with a seizure.  She's waking the birds up on those mornings.  That was today.  Yearbooks were to be given out.  


The road to hell is paved with good intentions...and I bought a brick with my name engraved in it.  Last night, for all my writing of being careful waking her up and timing and circadian rhythms, planetary farts and feather dipping, I committed one of the major Boo Boo's in the epileptic rulebook for my Humanling.  She had been awake about 20 minutes prior asking if she could come out and sleep with me.  I told her that the rule is if the light is on, then no.  It means I'm staying up longer (probably playing Farmville and babysitting all my blogs) and that she can come out later.  So I decided to save her the wait and went in awhile later.  Remember last night's blog in which I stated that no matter how asleep she was, the magic words that promise sleeping next to mom wakes her up Just Like That?


She didn't wake up Just Like That. At first.  I asked again and she suddenly jerked open her eyes and screamed bloody murder.  (No chizz this time.  Just bloody. Murder.).  


With a consciousness entrance like that I knew we'd be stuck not lying down for a bit.  And so it went.  I walked her back and forth for nearly 10 minutes to try and stop the jerks that had started.  Eventually she got all angry at me because she wanted to lie down but I knew if she did, she would fall into a full fledged seizure.  The longer I can keep her on her feet, the better.  Finally she indignantly laid down.  And thankfully we'd been up long enough because there were a couple of minor twitches and then she twirled her hair through her fingers and fell asleep.


Those are the moments  I realize that most parents can take for granted their kid just going back to sleep.  Not so with my child.  She has to be monitored until her body can calm down.  


Tonight however, I will NOT be prematurely extending any offer to come out and sleep next to me.  If she wakes herself up while talking in her sleep, there will be a spot waiting for her. 

Mean Teacher Pinata for Sale

The last week of school is upon us...yeeee haw!!!  This is great because I don't have to wake my darling child up too TOO early on many days.  I work from home three days a week and so she'll only have to get up against her inner clock on two of those days.  Sort of like a reverse normal week during the rest of the year.


I don't know if it's her or the meds, the epilepsy, the moon, the stars, the shoe size of a gorilla or what, but she talks very often in her sleep.  Not the mumbling kind where you can't figure it out either.  If she ever gets married someday, she better hope she says nothing incriminating because her hubby will hear it ALL.  I can hear it from a room away as if she's awake, reading a script. 


She had seen on I-Carly (that show that makes adults look like bumbling doofuses that can't flip a light switch without the aid of a child for direction) an episode where this kid Neville says "Aw, Chiz!"  She has taken to this phrase as if it's an obligation.  To me, it's the kid equivalent of "Aw, SHIT!"  So last night, as if needing to read an entire football stadium, I hear "I need some Chiz!" from her room.  Ok, we don't need that kind of statement in public, Ever.  It doesn't sound like there is any profitable outcome from that.  So I went in, checked on her and asked if she wanted to come sleep with me.  Somehow, those words always drill right into her psyche.  She was up and in here as if she were moving before I'd asked.


But it makes things easier for me in the morning.  I don't have to listen for anything strange from the other room.  I put one hand on her so that I can feel if anything is starting.  This morning she was having a mild start to a seizure.  But because I could feel it, I told her to get up right away.  For whatever reason, this helps her.  It pulls her out of it.  My guess is that the brain now has competitive stimulation ... now she's standing, now she's walking, now she's navigating through the hallway.  Many times I will have to lead her through the house, back and forth.  Today was ok enough for her to do this on her own. And thankfully, most of the time she listens and just gets up when I tell her to.


Today she told me that she can stop a seizure sometimes and that it's like staring contest.  You just try not to move.  


Just the other day it was announced that 68% of patients with Juvenile Myoclonic Epilepsy (JME) become seizure free!  We don't know for sure that this is what my Humanling has but her neurologist seems to think so.  But because she was seizure shy during the last EEG, I'm not sure we can verify it.


For now, she has a pretty normal existence.  Except in some cases like where sleepovers are concerned.   She asks constantly about sleeping over someone's house.  And it breaks my heart because I can't put that on another parent or child.  As much as I want her to have a normal childhood, sleepovers are sort of out of the question.  She's tried her negotiation skills with me, since she is a Capricorn, after all.  "If I don't have a seizure for two months, can I sleep over so and so's house?"  
"Three months"
"Ok, Four months!" and there she goes upping the ante on herself, reminding me of the Bugs Bunny/Daffy Duck standoffs.  


An understanding teacher is key though throughout the school year.  I feel that hers has not been very supportive.  She's a first year Special Ed teacher and says really inappropriate things that make me want to stuff jalapenos in her mouth.  Last week she mentioned to Humanling, "How did you even make it to the 7th grade?" 


I've had talks with the school psychologist previously and we couldn't move her to any other classroom.  Next year I hope for much better for her.  As any parent would.


Time to for me to wind down now in the event that someone shouts out for more Chizz.

Mc and Regular Cruelty

"Mom, it's skipping again!"
"Maybe you should cast as spell on it."
"No.  You do it...."


And such are the usual conversations that go on around here.  The nights feel as though I should rent the Native American party package....one bonfire, one teepee with buffalo rugs, smudging....I usually have some flute music going in her room for the white noise effect.


 Coyote Oldman retired on us the other night by track 2 when it started skipping.  I think he needed a hiatus.  He's been in rotation for weeks now.


I have a feeling that when school is out next week I will have to honor a request to take her royal hiney to Burger King or Wendy's.  She's off on a new obsession in the last few days.  McDonald's french fries used to make her barf.  Burger King's has done it before too.  So she wants to induct herself as a science experiment and see if she can tolerate the fries there at all. I'll probably just pretend there isn't one in the area and go to Wendy's.  She can experiment when she's out of the house someday!


She thinks she's slick though.  She's nicely say to me "Mom, I think you need the night off..." and clearly you can see where this is going......"Let's go to Wendy's!"  


At the same time, she is furious with McDonald's for other reasons.  The McNuggets.  I've mentioned that we are vegetarian.  Only in the past year has she really been checking out one of the reasons why.  She watches a PETA video called McCruelty and of course it shows the degrading life of a chicken before it becomes a sanitized, cute idea of a fun lunch.  She wrote a speech tonight that she wants to say to her friends at school tomorrow.  We worked on it a tiny bit together, me only tweaking it where it sounded like she was "blaming" in her speech..i.e. See what you do to these chickens by eating McNuggets.  I suggested gently that she change it to "see how the chickens that are made into nuggets have to live".  She actually took the suggestion after balking just once!  I'm proud of her and definitely want to encourage her to say what she has to say if she feels it is just.  


While she was in school today I wondered if the hairs on her arms were standing.  The Emergency Broadcast System went off on the television, and you know, the EBS is #2 on her Obsessions list.  I'm terrified if it comes on at night that she'll hear it subconsciously and wake up freaking out.  Even if it's on mute! 


Last night we decided to have a Word Search contest.  We both got a clean sheet with letters on it, ready set go'ed and had a race to see who could finish first.  That little sh*t kicked my ass twice.  I won once and her reaction made me feel like I butchered a bunny in front of her.


I couldn't stand her teacher this year.  It isn't anything personal for but a first year "special ed" teacher this lady may as well have written "you suck" on the desks in crap.  I know she taught Humanling some things.  But sometimes these little anecdotes get back to me and they really piss me off.  Today's theme was "How did you ever even get into the 7th grade?"  She said this to my daughter.  I complainedI in the beginning of the school year that I didn't think she was the right teacher for my daughter when she bitched about how tiny her handwriting was.  She went on to say that if she could get a job writing on grains of rice, she'd do really well.  Then asked me if I could understand anything that she wrote.  


Why yes I can.  And on her IEP is physical and occupational therapy.  If you have a problem with her handwriting, take it up with the therapist to work on it.


She had me (frothing) at "Hello".


My answer of course to How did you ever even get to the 7th grade would be How on earth did you get to be a special ed teacher???  


No sir, I didn't like it.


But I've heard on the DL from someone within the school, that I am definitely not the only parent barring fangs at her. 


  But we have a whole summer to grow and reach and I have something irreplaceable, whether she can or can't write big enough, whether she can or can't do an interesting book report or whether she can or can't work out a math problem that a girl her age should be able to do - I have an incredibly special experience and relationship with this human that I am grateful for numerous times a day.  

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.  

Fire Alarm Shaped Cupcakes

We had a clear couple of days which is always welcome.  Hard to believe Humanling used to go for six months without a seizure at one time.


Our guests came and went and Humanling's room went from a major disaster to a slightly not as major disaster before they got here.  Her Auntie Mame brought her a tiny 2012 Hess vehicle which was quite the trophy to receive.  Whether or not it has to do with her condition, Humanling has a few obsessions.  Hess vehicles, fire alarms (major fear), tornadoes and emergency broadcast interruptions on the radio or television.  Everything but the Hess vehicles are basically the boogeyman for this 13 year old.


She'll actually go on YouTube and look up fire drills and emergency broadcast system videos (to which I ask posters, Why?  Why are you posting this crap? When did you stop in your tracks and note the light bulb above signifying this breakthrough of an idea?)  Part of me thinks this is great!  She's facing her fears!  And part of me is like, why are you causing obsessive nightmares for yourself so that I have to be woken up all night long while you imagine that a giant fire alarm is chasing you?


On her IEP at school, they used to list as a requirement that she be on the Fire Alarm Promo list and get the heads up ahead of time.  Then a teacher would hold her hand and walk her out first.  They don't do that anymore for her thankfully.  It did get her to score a hand holding event with the boy she had a crush on though at the beginning of this school year.  The story goes that he held her hand as the alarm went off and then his shoe came off.  I wasn't there. That's all I got.


This week her newest priority is for me to take her to Burger King or Wendy's for "some girl time, you know...just us, and lunch."  Hm.  So living together, Just Us, or doing puzzles together at night or playing Monopoly or going to the deli for fresh mozzarella sandwiches is not Girl Time.  Once you enter the realm of the King, you've entered Girl Time.  She did fess up that she just wants to see if the french fries still make her barf.  She's gotten sick in the past from McDonalds or Burger King fries and deep in her soul, she needs an update.


We had some cupcakes on hand from the local bakery for the special occasion of guests.  Tonight she had the last of hers and left the empty box in the fridge.  It looked like a raid.  


She brought home a flyer to sign up for soccer for the next school year.  Things like this make me so tentative.  On one hand, I envision her a super star...yeah!  She's got epilepsy AND she can shoot a hole through anyone to make a goal.  Reality though...the sun bothers her and being stuck in the wrong sun spot will freeze her like a hologram and half the time I have had to physically nudge her out of that space.  I don't really know how she does on the playground in school if she forgets her sunglasses and hat.  


Right now though, she's asleep, listening to a CD because I feel that the right music all night long is like white noise and blocks other sounds out so as not to wake her.  And I'm about to go into her room to ask Coyote Oldman to weave those dreams of fancy, well dressed fire alarms a little quieter.  

It is indeed a stereotypical lovely nearly Summer day!  I did run into Humanling's room a couple of times thinking that I heard a noise, but really, sometimes the sound of the guinea pigs drinking their water from the nozzle is what is waking me up.  Bad boys!  No drinking between 5am and 7:30am!  


She's been a bit hot today, poor thing.  We're on the second floor and yayuh, it is hot up here. Especially when I decide to cook.  But I made her favorites...deviled eggs and kale chips.  We're having company later so I had to boot her out of the refrigerator or else she'd probably eat an entire half dozen eggs by herself.  Since embarking on this "teenage" thing, she eats like a small boar and remains a rail. 


Today I like to remain some cute things that she does or says.  Like the other day when she was wearing this beautiful brown dress with blue swirls in it.  Amazing what color can do to enhance already existing beauty.  So she's sitting in the recliner, but damned if I can yet teach her to sit like a girl while wearing a dress, which is probably why she owns so few.  So I said to her "oh that color looks really good on you!  It matches your hair!"  She replied "What, the underwear or the dress?" 


We can't blame it on bad parenting when kids don't grasp the better way right off.  My mother is probably the reason why I resisted being any sort of neat freak for decades.  She'd clear a plate away from in front of you if you weren't looking.  I become rather expulsive as a result, but it's not her fault. It's who I was.  Humanling is a lot like I was in some ways....resistant to neatness.  


But the other day I called her doctor to hear about some blood work that we'd gotten done...extensive since she'd been complaining of ritualistic belly aches.  She's like that anyway.  She relishes telling me every day that she thought she was going to "puke her guts up all over the floor" in school.  This is an absolute delight for her.  So this morning she started with her belly feeling off and I immediately grabbed my invisible mike and addressed my audience.  "Folks, Humanling has yet ANOTHER bellyache.  What, praytell, could be the reason for TODAY'S bellyache?"  It got a laugh out of her and that's when I know she really isn't that bad off.  I put her through tests like that because she seems to enjoy being sick. So I make jokes and if she is really not responding, shit's going downhill.  


So the nurse mentioned that in her bloodwork there was a flag on something called an ANA screening.  Wha's that???  Huh?  She said it signifies rheumatoid arthritis.  That makes sense to me.  She had Lyme's and was treated for it.  So maybe this is just an elevated marker?  I don't yet know.  What I do know is that the doctor's office, busy as they are, have not called me with the info regarding the bloodwork.  Ok, that's unfair of me to say.  I actually am really bad at checking messages on my phone.  So maybe they did call and I missed it.  But still.  So the doctor is still supposed to call me with an explanation about this "red flag" status.  Man.  I can't have her on another round of doxycyclin.  That was barf Russian Roulette.  You never knew what day it wouldn't work out...and that lasted for a month.


The child has been outside with the downstairs neighbor's two year old.  She just came up to bring back a glass and spoon that I gave to her filled with "italian ice" ... really it's 100% juice that's been frozen.  She grabbed me and kissed my nose. My reaction was "Oh My God.  I think you filled my nostril with saliva."  


So yesterday morning we were chilling out doing our parallel playing in the living room.  I took control of the tv and put "I Love Lucy" on in the background. She couldn't help but peek and see what was up.  Lucy's antics are so freakin' hysterical.  It fills me with pride to pass down something so classic like Lucy.  Only as we watched I noticed that Lucy's cry is just as horrible and annoying as Spongebob Squarepants' laugh. No really. Check for yourself.  Out of respect I won't even post a link to either.


Today has been a mostly lovely day.  Humanling has planned a surprise for our guests later (they are my co-host of our show, Scorpion Equinox and her boyfriend, who is quite the author and poet).  She wants to dress up in her concert clothing and play We Wish You a Merry Christmas on the keyboard.  I think she should learn "Axel F" but whatever.