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.
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