I think one of the harder things is talking about it. With so much uncertainty it’s hard for me to explain what we are dealing with to other people. How do you explain to people that the only thing that Continue Reading
Family support
Apparently the Rett family support system is very good. And it should be. It needs to be. With so few families going through this, any connection is a much needed exercise in shared experiences. I reached out to my local Continue Reading
Flying to Texas
The airport was easy enough. All she wanted to do was run around. The irony is not lost on me that were going to get her evaluated by Rett specialists and all she wanted to do was run, considering there’s Continue Reading
Family time
We were already planning on heading to Texas to see my wife’s family for Christmas and it couldn’t have come at a better time. We definitely need to be around family right now and so does the little one. Hopefully Continue Reading
Disney Land
We went to Disney today. It was a way to get away from it all. It’s hard seeing other typical kids running around, enjoying the park, knowing our little one will never really be able to. But, she had fun. Continue Reading
We will win this
24 weeks ago – after months of asking the questions of ourselves, of our doctors, of our friends- our pediatrician suggested we get our two and a half year old evaluated for autism. 18 weeks ago we found out that’s Continue Reading
How did this happen
We knew something was wrong with her. We’ve known for awhile. We just didn’t know it was this something and we didn’t know it was this bad. We’re looking at a lifetime of taking care of her unless a cure Continue Reading
Diagnosis
Up until today we thought we were dealing with apraxia. We thought with intensive speech therapy she’d get better. Up until today we thought we were on the road to recovery. Instead, we learned we’re on a much worse road Continue Reading
