She also only had one illness. (It took several doctor visits and two different antibiotics, but that simply is nothing for October) We got her g-tube switched and it lasted a whole two weeks before it malfunctioned and turned into the Bellagio fountains and had to be replaced. And I only have to had to call a drug manufacturer EVERY FRIGGING DAY, wasting hours of time, to try to figure out why no drugstore in my area can fill a simple prescription for a scopalomine patch. (Usually a motion sickness drug, but in FP's case , it's an important medication to help stave off pneumonia) I don't hear of any little old ladies on cruises going without, the FDA's website does not list a shortage, so why can't a disabled kid get some, hmmmmmm?? Funny, still no answers beyond a "We are aware and are working it" from the factory. Why yes, I am the kind of mom who will hunt the factory's phone number and call them. And then bitch on their facebook page. Why do you ask?
And it's not even that Betsy DeVos is a joke. (I say "joke" because it's the only four letter word I can use and not ban my mom from reading this. Feel free to insert your favorite word there. I know I am.) The alleged Secretary of Education (I say alleged because I have yet to see her act like one) is ignoring anything pertaining to the disabled when she is not outright discriminating against them. Filthy, rotten "joke." Seriously, she has, among other things, told the Dept of Education to IGNORE complaints if they are made by someone who has ever made a complaint before. Parents of special needs children tend to think and act like, well, activists. You simply have to be to get anything done. Now, she has issued instructions saying we are to intentionally be ignored. Has the woman never read a book? Specifically has she never read A Tale of Two Cities or Les Miserables? Does she want a revolution? Because this is how you get one.
Sigh, I'm whining and I know I shouldn't be. Feisty Pants is doing well on the new antibiotic. She has been named student of the month in her class for hard she works. We have FINALLY gotten aquatherapy and massage therapy back and it's been WONDERFUL. (Hollalujah!) It's October (even if the weather doesn't realize it) and soon it will be Halloween. (We LOOOOOVVVVEEEE Halloween. It's the only day of the year we seem to not be freaks. mwahahaha) I am actually acutely aware of how grateful I should be right here, right now, in THIS moment. I truly believe that the Universe hands us lessons and circumstances for a reason. So why can't I catch my breath and feel the gratitude I know is lurking beneath the surface?
You know, I recently read of something the article's writer entitled "school restraint syndrome". It's when a kid spends too much effort and energy being good and sitting still for school that they then come home and totally act out. I totally get that. I, too, have only so much restraint and maturity to offer the world. So I'm gonna label this "special needs mom restraint syndrome". I have been spending all my grown up currency dealing with people who are semi polite but yet uncooperative (look away NOW Mom) dicks. I only have so much currency left before I too act out.
