Monday, April 28, 2008

In the beginning

In the beginning I created this blog. My hope is to allow people to catch up with the Dawsons. Although for safety's sake I won't be using the kids' names, I don't think it will be too difficult for you to figure out who I'm writing about.

It's 2:22 in the morning, and I can't sleep again. Hopefully I will get these allergies under control and breathe freely again. I really think I'm just allergic to this state.

I have been emailing a friend of mine lately about the latest Epilepsy flier that came last week. In it they profiled a young man from our city who had Rasmussen's but whose parents chose not to do the surgery. The young man wrote it from his perspective, and I was pleased to see that he had earned his eagle scout award. He wrote about how scary the surgery idea was, and how his doctor put him on an altered diet. The result - he has more problems than our #3 child, he can't use 60% of his arm, he's in resource classes (used to be in honors), has heart issues, etc. I spoke with this family when we were making the decision about the surgery, and I remember being discouraged that they hadn't chosen surgery, but I try to allow room for others to do it their own way. Needless to say, I had a very negative reaction to this article (as did my friend who's adult son had Rasmussen's and the surgery too) and contacted the epilepsy society to offer a different perspective: one of hope and a new way of doing things. They were pretty much stunned at all of the things #3 can do. They asked if I would speak with parents about our experiences in their support group, and they may profile #3. I have agreed, but don't want them to publish #3's picture because of the whole stigma attached to what she has left of her brain. I think that in the future it is up to her to decide what to tell people. For now, we just need to help other families see how fabulous she is, and how normal her life pretty much runs.

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