I am SO stinking happy that there are Rett syndrome podcasts popping up. Today, I joined Sarah & Sam on their show which is about bringing families and friends together from the Rett Syndrome community to discuss life, research, and just to have a fun time. And what a fun time it was! These two...
Keep falling until you can’t fall no more Until you feel like you’ve been falling for way too long Then you will know ’bout me -fink I usually know what I’m about to write when I get to this blank screen. I have a number of posts that sit in my drafts. This has been...
If you’re suffering with your child’s diagnoses (and really, who isn’t?), the greatest gift you can give to yourself is coming to Orlando and attending a P3 weekend. It’s like months (years?) worth of therapy in one weekend. I have never moved through so much pain so quickly and with so much support as I...
Pretty soon here, we’ll be hitting our 9 year D-Day anniversary. In the beginning, “hope” looked vastly different than it does now. A newly diagnosed mom recently wrote to me and said: “I haven’t read a single thing that has inspired me or given me confidence, as much as anything can with this ridiculous syndrome,...
Hellooooo friends! Wow it’s been ages. So much has happened. We’re in a beautiful home now. It was a really long haul to get to this point but we’re settled and happy. Grace is settled in school. The bus is working out just fine now. She has all her insurance and doctors and meds in...
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...
