This morning in the haze between sleeping and waking, during a stream of thoughts that now elude me, I coined a new term: fabotage ( Read more... )

Although those of you have been to my house know that I have a lot of crap, you may have also noticed I don't have massive collections of any particular thing (unless you count books, which I don't, unless they are all about the same thing). However, every now and then a theme emerges or an opportunity presents itself and I realize I've got a ( Read more... )

Well, H never did end up going to school last week. In fact he's taken a turn for the worse and with only two days of antibiotics left I have little hope for a speedy recovery. I've had some really bad days. A is basically doing the minimum -- 4 hours per day, plus 24 on the weekend and I have childcare once or twice a week. I have felt pretty ( Read more... )

A Statement of Solidarity for the Dignity of People With Disabilities:
A Reaction to the "Ashley Treatment"We, the undersigned individuals and organizations, are in agreement that the growth attenuation therapy administered to the little girl known as Ashley is an affront to her human dignity, and to that of all people with disabilities. Despite ( Read more... )

Anjibobanji just reminded me of this story, so I thought I'd write it down here for posterity. In the summer of my 11th year I was staying with my grandparents in Northern British Columbia. There were horses, and hills and fields, Birch tree forests, a little beach, a freezing cold lake, and some neighbor kids. I was reading everything I could get my hands on ( Read more... )

H had his annual feeding clinic yesterday. He has lost 20% of his body weight (already barely on the charts) since his birthday last March. He's been refusing food and liquids on and off for months. The swallow study conducted last summer showed that he was aspirating a little bit with almost every mouthful of food or liquids. All of this adds up ( Read more... )

Today I took H to check out fancy jogging strollers in the hopes that we could find something off-the-shelf instead of going the special needs route. The problem with special needs strollers is that they are years behind on the design and functionality end of things and that they are intended for bigger kids -- 100 - 200 lbs. -- they're big, bulky ( Read more... )

What is happening to me? I think I am getting old. For example, the other day I was at one of H's appointments and there was a mom there, around my age or older, punk rock -- boots, leggings, short skirt, piercings. Someone I might have hung out with ten years ago, but that day I felt painfully aware of the distance between me and her and me and ( Read more... )

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Boy! You guys must be a busy bunch because it appears that the last post on my friends page went up at 12:01pm. I should be cleaning my house/getting work done, but a) I'm sick b) I'm tired and c) it's Sunday night.

There is a livejournal community called thelifelist, where a bunch of twenty-somethings have posted lists of things they want to do before they ( Read more... )