michaeldthomas: (Caitlin 08)
My daughter’s brain remains normal, but man is she tired and cranky. This is normal after big seizure days, but it’s pretty unpleasant (lots of whinging and eye closing). I wish that I could just let her sleep. Unfortunately, naps bring on startle seizures, so no dice.

Caitlin got to do more of the model thing this morning. We went to the park for another Easter Seals' photo set. She was nice and happy on the swing.

The swing was actually the best part of the day. DeKalb Park District finally put a high-backed swing into their new “accessible” playground. This was the culmination of about a dozen meetings between the park district and me over the last couple of years. It’s a wonderful feeling to have your special child actually enjoy a playground.

After that we went off to Barnes & Noble and Target. A very sweet salesperson came up to us in the Barnes & Noble and made sure Caitlin entered a drawing for an American Girl doll. Though I’m not a big fan of the American Girl Empire, I was very happy with the salesperson. It’s very rare that anybody comes up to us when we’re out. There have been times that I think Caitlin and I have discovered the secret of invisibility. It’s important to me that people treat Caitlin just like they would any other little girl.
michaeldthomas: (YANA)
I am getting a bit overextended.

I found out last night that the Aicardi Syndrome Family Conference got more complicated again. I’m stressing out trying to come up with a solution.

Here are my current commitments:
Co-chair of the 2008 Aicardi Syndrome Family Conference
Co-chair DeKalb County Local Interagency Networking Council (LINC)
Member City of DeKalb Advisory Commission on Disabilities (a job that’s growing)
Member of an Easter Seals Committee
The Disability Commission’s representative on The Access to Recreation Committee

I do all of this while being Caitlin’s caregiver, coordinating her school, therapies, doctors, and insurance issues.

Oh, and I’m co writing a guidebook for Mad Norwegian Press.

And I’m writing a novel.

Somewhere in there I also clean the house, do laundry, and try to have time with my wife.

I’m beginning to think that I need to start saying no to things.

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michaeldthomas

August 2011

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