People often ask when Grace “came down with” Rett. It’s not really like that…Rett is always there. I say it’s like Grace had this genetically programmed glass ceiling that would only allow her to get to a certain age before Rett pushed her back. I don’t know how scientifically accurate that is, but there ya...
Hi all and happy awareness month (it’s starting to feel like a holiday). 7 years ago this month, my husband returned from a trip to Nigeria and as soon as we met him on the train platform, his first words were “what’s wrong with Grace?” Rett syndrome for Grace wasn’t a slow progression. It wasn’t...
“I have only one thing to do and that’s to be the wave that I am and then sink back into the ocean.” -Fiona Apple This one day about 10 months ago…I was in Lulworth Cove. It was an extremely cold, windy day. Very few tourists and they’re usually there no matter the season. I...
(Just when you think you’ve seen it all) There’s always something new around the corner when you have a non-ambulant kid. But first a little story to get us going: Once upon a time (the day before we went to Florida for Christmas), we noticed Grace’s left leg wouldn’t straighten without her shaking and getting...
Beware this post is nothing but guts and tears. If blood makes you queasy, run. And please don’t comment about me being ‘amazing’ or wonder mum or whatever. You’re all wonderful but this post is about that magical thing when one person can sit down next to another and simply say “me too”. Another thing…I have...
“If you’re going through Hell, keep going.” -Winston Churchill One of the most heartbreaking issues to come up in the parent support groups for Rett syndrome is this issue of the screaming and crying during the period of regression. The helplessness in the voices of these parents – I remember it so well. And I’m...
This is Charlie —> I took this photo at one of the Cure Rett Picture the Hope Awareness Tour photo shoot days. And then just a day or two later, she fractured her femur at school. She wasn’t doing anything spectacularly taxing – just hanging out in the sensory room. She was simply moved and...
