Idle Hands
I wish she had idle hands. She doesn’t She has hands that won’t stop moving. At times, like now, they won’t stop moving extremely violently. Right now she can’t control them at all. I watch as she stares at them Continue Reading
Golf tournament
A few weeks ago I went to a golf tournament in Northern California for Rett Syndrome and I made a video about it. It’s a great event, very well run, and I think as a result, I’m going to get Continue Reading
Father’s Day
We spent father’s day with my family on the East Coast. We’ve written about it before – how much she enjoys her cousins; and this trip was no different. I think there’s a special bond with family that she understands Continue Reading
Last Day Of School
Year 1 of school is in the books. Hard to believe how difficult a decision it was for us to even send her to school. We were so nervous that she would lose more of her hand function, more of Continue Reading
Connecticut Commie…
A friend from high school interviewed me for her blog. As much as I talk about Rett Syndrome, I’m always grateful when someone else actually asks me to. http://ctcommie.blogspot.com/2015/05/a-fathers-advocacy-for-rett-syndrome.html
Memorial Day and Communication
We’ve been trialling a different eye gaze computer for the last few weeks. Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way Continue Reading
Third Installment – Katniss
Photo by Eric Guttierrez
Doctor and school updates
We went to see her neurologist last week. I keep thinking doctors are for making your kids better. But Rett doctors are not. They’re for making sure your kid doesn’t get worse. It’s a bit of a change for someone Continue Reading
Ragnar Recap, San Diego
My friend Nick and I drove a van for 26 hours for the Ragnar relay race that took a team of six women from Huntington Beach to San Diego – 182 miles. Each mile was dedicated to a girl with Continue Reading
