Note: there’s video in this post. If you can’t see it, click here. The biggest thing that separates humans from other beings is our ability to read, write and communicate. If we don’t give girls with Rett the tools to do this, we’re willfully taking away their humanity. I learned that from Susan Norwell, one...
Note: there’s video in this post. If you can’t see it, click here. Oh my goodness the internet atonishes me sometimes. I posted a picture of Elijah’s letter to Santa on Facebook last week and this Father in Missouri got a hold of it and read it to the congregation. There used to be a...
Note: there’s video in this post. If you can’t see it, click here. Yesterday was Grace’s 5th birthday. Pretty much all birthdays have been plagued and unenjoyable. Except for last year when we spent her day at Disney World! C’mon…how can you have a bad day at Disney? Yesterday started pretty well and I thought...
When Grace was first diagnosed, we believed she was cognitively impared (aka “retarded”). And, you know, I was ok with that. I thought “That’s cool. She’ll just get pampered and loved and taken care of forever and she’ll never know the difference.” To some, the idea of your disabled child being mentally impared as being...
Note: There’s video in this post. If you’re reading in your email inbox, click here to view. Because Grace has Rett Syndrome, we’ve been catapulted into a whole new world in the last couple years. Aside from running Gracie May Photography, photographing families and weddings, I’m on the board of Cure Rett and I help to run...
If you do just one important thing today, watch this video. The idea that just because you can’t speak, you don’t understand is such a travesty in the world of girls and women with Rett Syndrome. They are underestimated. Some are treated like babies for the whole of their lives. This is a very old...
