“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...
Little footage from a photo shoot when I tried to do Grace’s portrait. She was only 2 but couldn’t hold herself up without help so I decided to photograph her the way I did when I was doing newborns. Half of this is Rett and the other half is her just being a sleepy diva. The...
When Grace was first diagnosed, this term “eye pointing” kept coming up and it didn’t make much sense to me. When Grace was still a baby and young “toddler” (who never toddled) she was addicted to her bottle and one of the ways we displayed her ability to understand us and interact with the world...
“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...
Grace has the most spectacular carer/nanny, Anna. She takes Grace to her church on Sundays and recently, came back with this little story of triumph for us. It’s bittersweet and you’ll see why… Grace saw a little friend at church who was in her class at school last year. He (innocently) said to her something...
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...
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...
