“I have little bones” -Dolly Parton From our family to yours, a few ideas for holiday activities: Decorate cookies Ice skating Caroling Family game nights Watch your daughter suffer the most excruciating pain possible for a week before finding out she’s broken both femurs Ya you heard that right. Grace broke both femurs during a seizure...
Facebook has that great “on this day” thing where it reminds you of things you posted on that day in previous years. Sometimes I laugh, sometimes I think “wow I used to be such an a-hole”. About this time 7 years ago, Grace was going through her sudden Rett regression and we were in the...
“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...
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...
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...
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...
