But I love the bones of you, that I will never escape.

I spoke to a Tarah last week; she asked me to make an image for Julia out of a photo she shared with me, she said. “I want you to be her voice, and tell me what you see.” I’ve been doing this for a while now, but most of the time people send me […]

Besties, buddies and beautiful people

This blog is all about friends, besties, buddies and the best of friends.  I was incredibly moved a few weeks ago, when I read how thrilled one of the Mums was with the behaviour of a girl who had been so sweet to her child at a school activity, making a huge fuss of her and […]


I define me. Hair is such a massive part of human life; it differentiates us as humans from practically every other species. Even among ourselves we have completely different hair types, colours and textures. It can be a source of pride, even a source of vanity but mostly, it is a big part of what […]


We come into this world connected to our Mums, and spend the rest of our lives connecting. Part of that connection is verbal, through words and sentences, but I think language is just a more obvious way to connect. There are some things words can never do a good job explaining, the deep comfort of […]

She is my rock

This week we are talking about Grandmothers, and by that I mean Grandmothers of girls with Rett syndrome. I’m lucky enough to know so many fabulous Grandmothers now, most of them through facebook. I know I can’t speak for every relationship, but I can speak for the ones I know. Here’s what I love about […]

She aint heavy…

I wanted to talk about heroes this week, the biggest of heroes, I wanted to talk about brothers and sisters. I’m lucky enough to have both, and I can’t even fathom of my life without them. No matter what happens, they’ve got my back, my best friends and my biggest supporters. When I’m hurting, they’re the […]

Sleeping Beauty

I love sleeping, what I mean by that is I love a good sleep but it’s not always an easy thing to get, especially not if you’re a parent or carer of a child with Rett syndrome.  As well as everything else Rett syndrome does, it also plays havoc with the sleep ritual, and even […]


It was Mothers’ Day on Sunday, one day a year where we get to celebrate all things our Mums do for us, it seems a very small reward. Mothers are nurturers, care takers, feeders and protectors, they would and do, do anything for their children. Mothers discipline, they instil moral values in their children, they heal and […]


Some days it’s incredibly hard to say things, to write things, emotionally you’re torn up about how to say something the right way. Today is one of those days, and the only way I know how to deal with this is through total open honesty. This is a very tough post for me. Three little […]

I’m in the room

I don’t have a child with Rett syndrome, in fact I don’t have a child.  I have many God-children, many nieces and nephews and many children I wish were mine (some are not even children anymore – they’re just old enough to be mine). Every single one of them is so very special to me, […]