I find it incredibly difficult to write and post when I’m really stressed about something, which is why it’s taken me a couple of days to catch up with this. Strange really, when the whole point of my blogging is having somewhere for me to write things down, put my feelings in a space rather…

It was supposed to be a consultation. There were 45 minutes blocked off for it. We entered the room and met someone I presumed was the geneticist but all I think I heard her say was her name, not who she was in the scheme of things. My nerves had got the better of me…

It’s been four months since the paediatrician uttered the words Ehlers Danlos Syndrome in relation to my 6 yr old little boy, and since then, I’ve read and researched what I can. I’ve seen the genetic counsellor and this afternoon we have our appointment with the geneticist where a diagnosis, I presume, will be final.…