Advocacy

I had so many great blogging intentions yesterday. I was all set and ready to post my first Thursday Doors post when I got a call from my youngest kid’s teacher – the school advocates were going to visit the school. So I rushed over to get their help.

Their first question (and probably yours at this point too) was what’s the problem? My son is fed by g-tube, I told them, and is being forced to go to the infirmary every day to be fed. He’s alone over there with the nurses (particularly Nurse Nancy) when he’d rather be in the cafeteria, socializing with his friends. I added that we (myself, the principal and my son’s teacher) had tried to talk to Nancy about the set-up but she refused to even meet with us. They agreed that wanting to eat with his friends was a reasonable thing to wish for, and so we all (me and four advocates) walked over to the infirmary together. It’s a five-minute walk, outside. We’re in Canada, so that means it takes longer in the winter with getting dressed for the snow and then trudging through it.

First the advocates talked to my son, who said yes, he really really wanted to be fed in the cafeteria. So they approached the nurse. She was livid, as I expected her to be. She insisted she had never heard of a meeting, let alone refused one. She said my son spends enough time in the school already and doesn’t need to be there for lunch, to which the advocate replied he’s already disabled (he’s Deaf) and so, excluded from society. Having to be excluded further by taking him away from the precious time he has to socialize with his peers is potentially damaging to his psyche.

Nancy said it would take too long to feed him at the school, and that the other kids wouldn’t wait for him to go out for recess. But that, the advocate said, would still be time he doesn’t otherwise get to socialize. Then she said he could come to the infirmary earlier to get back for more recess time – so why couldn’t he start feeding earlier at the school and be finished at the same time as the other kids? It would also cut down on the traveling time.

Then she said it’s just the way it’s done – all the other Deaf schools in the province feed the kids with g-tubes in their infirmaries, to which the advocate said it’s not so. He’s seen kids in other schools feed in the cafeterias with his own eyes. Take that, bitch!

She said his feeding pump doesn’t work properly – I told her I have a new one on order and it will arrive next week. Ha! Take that times two, bitch!!

She said his behaviour when he’s at the infirmary is bad, so it wouldn’t be appropriate for him to eat in the cafeteria. The advocate said that’s not relevant. And besides, he’s a kid!!

Her final argument is that there isn’t the nursing staff to send over to the cafeteria. So the principal’s boss is going to talk to Nancy’s boss and see what can be done. As the advocate said to me, he has a right to eat with the other kids. He shouldn’t be punished for having an extra disability.

In all the years I’ve known Nurse Nancy, I’ve never got along with her. It’s like she’s desperate not to let go of my son. With the lack of any better excuses she blamed my son, (his behaviour) and me (the pump). It was wonderful to have someone on my side who didn’t back down. She’s a real nasty piece of work – I don’t think I’m the only one who’s a bit scared of her.

So they’re going above her head. I just hope she doesn’t make my son pay the price in the meantime.

On the heels of EM the Merciful

I hate the feeling that my goodwill and compassion is being taken advantage of. Without any word of a lie, as much of the time I spend looking after myself, equal to or more time is spent on looking after everyone else. I’m always the first one to say, “don’t worry about it. I’ll do it.” And so I take on everyone else’s burdens. I have a hard time delegating. Especially when I can do most of the things that need to be done faster and more efficiently than those around me can.

I’m exhausted. Both physically and mentally. My frozen shoulder won’t let me sleep during the 5 hours I night I manage to be in bed. The pain is inhuman. When I am awake I’m being pulled in a thousand directions at once: have you done this for me yet? Have you called this doctor for him? That doctor for her? Can you come with me to this or that appointment? Sorry, I’m too busy to help you. Maybe next month… You want the money I owe you? Fuck you.  This is what I listen to every day. And yeah, I allow it. But the truth is, I’m the only one who CAN do three quarters of what I do. It’s why I don’t have a job. Pfft. Like I sit around watching soaps all day.

And then everyone wonders why I go away on vacation alone.

I need a vacation. Again.

Daily Post – Food Bites

The Daily Post asks us to write about ” Food for the Soul (and the Stomach)”.

I have a love/hate relationship with food. I love it, it hates me. Or so it seems. Conditioned from an early age that it’s of the utmost importance to have an eighteen inch waist (thanks Mom) I’ve been struggling with my waistline since I was a teenager. I would eat all the time if I could. But I can’t. My low metabolism doesn’t do me any favours either. As far as I’m concerned, food bites.

Nah, food for my soul is language. Words. They float through my mind, calorie free and I breathe them back out onto the page. Yes, okay, sometimes they resemble vomit more than the whisper of a breath, but that’s what polishing is for, right?

Tell us about your favorite meal, either to eat or to prepare. Does it just taste great, or does it have other associations? – the daily post

Though I’m also very fond of Japanese, my favourite meal is English. British English, in particular. (You may notice my spelling of the word “favourite.”) I like to prepare it in the form of fiction; the longer it takes to make, the better. For me there’s nothing better than the smorgasbord of a novel, laid out on a vast table of white and just waiting to be devoured. In one sitting, if it’s delicious enough. I strive to be a master chef, though there are a few masters to whose work I shall never live up.

Words satisfy my hunger for knowledge and for passion; they fill the tastebuds of my emotions with joy.

Oh, and wine is good too.

Well don’t I suck

I lasted four days at “3 Words A Day.” I’m giving up because all I managed to get out of it was a headache and a bunch of boring posts. So boring that not even the host of the prompt could be bothered to “like” them. That’s gotta be the reason, right?

Right, well. Now I need some inspiration. Any suggestions on prompts that don’t insist that you commit? I really don’t want to suck at this prompt business.

The Things I Do For The Sake of My Characters

Under the category of: You know you’re a writer when…

I’m finding myself looking at pictures of half-naked women to figure out what turns my main character on. He’s a fictional heterosexual man. I’m a real heterosexual woman.

Now that’s dedication, is it not?