Tuesday, June 06, 2006

This Morning is a Screw'em All Kind of Morning

I lost my temper about trying to get an appropriate temporary wheelchair for Robert this morning. Really lost it. I finally went for an exercise walk to calm down, and I was thinking that, as a family, we've really settled into a normalcy of the abnormal. That is, we're generally comfortable with where we are and how we deal with Robert's disabilities. A number of issues have been worked out and our family life had been stabilized.

But the long recovery from this surgery opens up a big window of time where we're dealing with abnormalities of the abnormal--thus, every wound that is temporarily staunched about Robert's various capacities is slashed open again and we have to find entirely new methods of coping with every day things. It becomes unbearable when the abnormal becomes even more abnormal for what will be weeks at a time.

And we're not getting a lot of help from doctors, therapists, etc. There is a delicate balance for physicians between telling a parent of a disabled child what to do and relying on the parent's knowledge of their child's issues to guide treatment. But, too often I find that various healthcare professionals don't try hard enough to use their training and expertise to find solutions (at a minimum, in-part solutions) to my child's issues and problems. Too often I get, as a cop-out, the line, "Well, you're the mom, so you know best/you can figure this out." I feel blessed with some extra genetic dose of ingenuity, but I get very drained trying to come up with solution after solution to problems that, hypothetically at least, my insurance company and I are paying someone else to do.

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