Wednesday, August 20, 2008

Response to comment

Someone left a comment asking if I have found any support groups...

Dr. Dudgeon and I were actually talking about this today. When Addie was four-months-old, my aunt started monitoring an on-line support group for me and then a few months later, I joined the website. I monitored the website for about two months before I decided it wasn't for me - almost ALL the families were in other countries. I wouldn't dare try to lump everyone into this statement, but what I found was that most people at the support group had children with severe disabilities, much more so than Addie. It's not that I think I didn't "belong", it's just that I had a more positive outlook than some of the others and I came away from the website each time more upset than anything.
I asked Dr. Dudgeon again today if he had any other patients with primary Microcephaly and of course he doesn't. He reminded me of how rare the condition is and told me that the only babies he has seen were back in Colorado during his residency.
So all that to say, there are a few on-line support groups, but I have two amazing friends with special needs children and if I ever have something on my mind, they are the first ones I call or email. Although the needs are different, the understanding is not. They too, are very positive people and those are the type people I need to surround myself with.

This blog is my therapy and I tell people that not everyone will agree with what I say, but these posts come from deep within my heart. If someone doesn't agree, oh well. This is what works for me. I have really, really good days and days where I feel like the world is coming down on me...it is all laid out here. I hope that my public thoughts have a purpose...because this is one diary I just can't keep under lock and key!

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