My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Monday, September 8, 2014


I was cleaning up my bookshelf over the weekend and found a list I'd written tucked inside a book.  It was a list of all the things I needed to be doing with Eva back when she was still a baby/toddler and having motor co-ordination issues.  It filled me with such nostalgia and sadness seeing how I'd furiously written this list of things I must do with her each day to help her catch up with her peers.  "Grasp toys and place in bowl, hand-over-hand spoon to mouth and back in bowl, rolling practice, push up to sitting practice, making sounds together and repeating..." It took me back to those days when I was so sure she was just a bit slow because of her eczema but that she would eventually catch up and everything would be ok.

If only I'd known she had the beginnings of Rett syndrome...  I could have been a lot more gentle with myself if I'd known that we'd still be doing those excercises 6 years later and still making such little progress that it's easier to measure our success in patience than in achievement.

I look back at that new mother I was and wish I could take her aside and tell her it's not going to be ok all the time, but it will be alright.  That the excercises are important but not worth the guilt when we forget to do them or when I abandon them because Eva seems to just not care or even try.

I wonder what lists I'll find down the track and what I'll want to say to my current self in another 6 years time...