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. Today, I am going to share what she wrote as I feel it is a very real part of the adventure in Rettland.
One of the biggest and most disruptive ways that a condition like Rett syndrome changes your life is by taking it over with appointments. Especially – but certainly not only – in the early days, when everyone is trying to figure out what’s going on with your child. Hospital appointments, therapy appointments, school appointments, appointments to discuss every possible thing (and a few impossible ones). And after a few years of this, we start to question the point of it all.
My good friend Henrietta – mother of the extraordinary Isi, for whom she is the most persistent of advocates – is posting something on her Facebook page every day this month about her family’s experience of living with Rett syndrome. She has kindly allowed me to reproduce her words here. I wanted to share this post because it captures so well how all-consuming the appointment schedule becomes, how difficult it can be to fit any semblance of a normal life around it, and how it makes us think about how it could all be done better for our children……to read the rest of this story click here.