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Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Thursday, October 04, 2007

The big meeting

Today we finally had the big pow-wow to try and figure out what path to take with regards to the Boy, his illness, his behavior, and his effect on the Girl and me. There was a large cast of characters, so large that it was actually very supportive. Nice to feel that so many people were behind us, caring about our family, how to deal with my illness and it's effect on the kids, and just how to plan for upcoming changes we all have to make.

Some of the recommendations directly affect the Girl and I had a chance to talk to her today during our visit to Trader Joes (more on that in a bit). She was pretty hostile at first, but she realizes that she has to make some changes in the way she reacts to me, and that people are very worried about some of the recent stunts she's pulled (some of which I haven't shared here). Her risk-taking has always been astoundingly high but it's gone overboard recently. The pierced tongue is only one facet of it. Anyhow, HER meeting is next week, and we'll deal with that there.

The Boy got some pretty harsh news from this task force regarding the path he's choosing to lead, and I'm hoping that maybe it penetrated his very hard head. He's heading for a very big fall if he doesn't make some serious efforts. Tonight he was extremely cooperative and I didn't have to yell at him once until he started fighting with his sister. It's up to him now. The steps to better results have been laid out for him and he knows that if he wants to remain home, he has to behave, be cooperative, and respect personal boundries. The big question is: can he?

So much of what came to light in the meeting was really helpful for us all to hear. Because there were representatives from school, home, personal therapy, family therapy, social workers, and even my parent support liason, we got a very clear view of what the dynamics are and how they have to be repaired. It's up to all of us, me included. I keep too much from the kids. I get angry too quickly. I can't stand when they disregard my requests or tell me they'll do it "later" which means days later after I've screamed bloody murder. It's too hard a lot of the time. I'm so tired, and since my last hospitalization I have had a terrible time bouncing back. It's the first time I've really felt like I'm very sick. Even performing little tasks is so hard. So dealing with kids that disobey, fight constantly, and don't help at all at home is doing me in.

Having a plan is always best for me. I work better with backup help. This last year I was sort of adrift until fairly recently and what we've learned from that is that I don't have the strength to do it all anymore. I need the help, albeit not as much than as now. Now, my home health aide doesn't help enough and I need more hours. In the winter I'm going to need her to shop for me, because I'm just not going to be able to do it with the snowpack. I need her to deal with laundry after months of not doing it. And there are the errands that she will need to do, which she won't have time for either.

It will be interesting to see what comes up next week in the Girl's meeting. Different cast of characters. Different issues. But still plenty to chew on.

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