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!