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.
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