Category Archives: Better Days

Does it get easier?

“Does it get easier?” “No. You just get better at it.” -The Good Wife I spoke with a new Rett mum the other day. When Grace was first diagnosed, no one told me the things I needed to know. I was instantly sucked in by the charities and was only promised a cure, hit up...

Rett syndrome on TBN

“To beg God for healing is to say we have more compassion than He does.” The hubs and I were on TBN Meets with our friend Leon Schoeman talking about a variety of things including how we come to terms with disability and our Christian faith. Oh, and if disability doesn’t float yer boat, Steven...

How to Photograph a Girl with Rett Syndrome

It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic. So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and...

Rett Syndrome is a Processing Disability [describing the mental side]

Finally! We have found a way to describe the mental disability side of Rett. Obviously, “mental retardation” doesn’t apply to Rett syndrome. Neither does “cognitive impairment” nor “learning disability”. Yesterday when Grace was having an eye gaze training with Hector from Tobii, he said, “Obviously, eye gaze is more difficult for Grace since in addition...

RECENT POSTS

READ MORE