Living in Rettland is often very different, complicated and far from the reality that others experience. However, sometimes it so simple, it reduces life down to it’s core, where hard …
Appointments (and dissapointments)
It’s been a big few days and again I find myself with few words. I met my friend Catriona in real life in Boston, at a conference for Rett Syndrome. …
Together We Are Strong
This is a short piece that the talented Joseph Mendoza put together. It is called Finding a cure-Rett Syndrome and MECP2 disorders. This video is a wonderful simple way to …
Sunshine and ambulances
Last Friday I woke up feeling amazing. The house was clean, I felt great, Claire had a banner week and Chloe was happy and compliant. After taking the girls to …
Amy’s class project
It’s not easy for me to post this as I don’t enjoy seeing or hearing myself on video but this was so thoughtfully put together, I can’t keep it to …
The Rett Clinic, not what I expected
Last Friday we made the brave journey all the way to Oakland to Katie’s Clinic for Rett Syndrome. So maybe it wasn’t that harrowing of a drive, but I really …
Enough?
How much is enough? How many hours of PT and OT? How much respit? How much equipment? When we got the diagnosis this in one of the things that was …