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.
The first words out of Humanling's mouth when I told her it was time to get out of bed this morning were, "I'm busy frolicking." Which unless the Emperor cannot see 'frolicking', she clearly was not.
Getting her ready in the mornings for school can put a sense of dread into waking up once the birds start their song. With the windows open, the birds sound beautiful, but rather loud. And I can't have loud noises waking her up - especially in the wee early hours of dawn. So I close windows. Then the cat decides that 4am is the norm for deuce dropping and her claws in the litter box echo down the hall, sounding like an angry teacher dashing punishment across a chalk board.
I am usually at my most tired during the dawn hours and am hoping to sleep soundly for another hour or two. But it is also here that Parent Ear has to perk up more than usual and listen for any tell tale signs of a seizure happening.
Sometimes I jump out of bed only to realize that the noise I heard was one of the guinea pigs getting water out of their bottle. I fear waking her up with all my mini fire drills, popping out of my bed every 20 minutes to check for sources of sound.
With Humanling's epilepsy also comes a more needy learning curve. She has an IEP at school to protect her from all kinds of academic unfairness. She is to get more time to take tests, she gets physical and occupational therapy and also a locker with a key instead of a combo. Special Ed classes don't look anything like they did when I was younger. I'm not sure if the stigma sticks but I don't hear too much about it. Then again, I don't have the pipeline to the lunch table when kids might have some opinions about special ed kids.
Recently Humanling completed a book report. This morning she was fretting that she might have to read it out loud and what if someone asked a question? I asked her what was wrong with that....she read the book, just answer it as best as she can. And then she said "But I'm not a good listener". And it's true....she really isn't. I don't know if it's a good thing that she knows it. I gave her one of those moment pep talks about just listening closely to what a person is saying.
A frequent worry for me is how other kids perceive her. She was in a talent show this past Spring and sang a song from High School Musical. Her friends were insane with the clapping and various bouts of "Whoooo!". So it seems like the kids in her school are not the bullying ogres of my day in junior high....but then again, they hardly wear the t-shirt stating that they plan to give your kid a swirlie when no one's looking.
There is a class trip to Washington DC next year....you know the one that most of us go on at some point. Mine was in 5th grade. Theirs is in 8th. She's already asked me in all excitement if she can go. And this is where the dilemma comes in. I tried to gently tell her that she might not be able to go. What if she has seizures on the bus in front of her friends? What if she gets bus sick because they stop for the degenerative dollar menu at McDonalds? We're vegetarian. She has stomach aches on a regular basis.
I'm terrified that if she ever has a seizure in front of her friends, they will either imitate and make fun of her behind her back or - another equally great option - someone will be traumatized by the sight of it. What if they are afraid of her after that? What if whenever she walks by they make electrocution movements? I can't punch children. And it's illegal to hire Scut Farkus to do it for me.
Besides that, a solution of understanding is what would help. And maybe I don't give these smiling cherubs enough credit. We usually don't.
