Archive: 17 March 2010

I have been in a bit of a bad way emotionally over the last week. I seem to go through a bit of a rough spot in the days after an appointment, particularly at Great Ormond Street.

We are still in such an unknown space, they don’t really know what she has. My main concern now is whether she has a progressive condition or not. I was in such a bad way this weekend that I was convinced that she did, that she would end up completely blind, that Emily would have it too and that I would end up with two blind children where my only consolation would be that they would have both seen my face once upon a time. Good thoughts, heh?

I felt that we have been so unlucky with all of this that why should our luck not continue to decline? We have had no end to the cycle of bad news and it is really wearing me down. Each time I read (on the internet), something more, I get cold chills (eg nystagmus causes vision loss), then I realise it doesn’t apply to us, then it comes true. We accept the new reality, I read more, more cold chills (eg. Inactive cones mean legally blind), denial, reality. Sucks, sucks, sucks. Oh, and while I am catastrophising: she probably has one of the brain-wasting conditions, that first presents in the eye, where the child ends up blind, bedridden and demented, before dying. I’ve taken a break from the internet now. There are only certain times when I feel strong enough to seek out new information.

I need to re-connect with Charlotte herself. I don’t have a disabled child/baby, I have a Charlotte. And I love having a Charlotte, she is wonderful: she chuckles when you jiggle her really fast, or kiss her feet (but only when she is naked!).

I’m starting to chase up some of our outstanding appointments and phone around for some new ones. I am really looking forward to a home visit from a low vision teacher tomorrow. He is going to show me some productive ways to play with her and I am also going to ask him about schooling options in our borough which have implications for where we send Emily in the next two years.

I also find Charlotte’s condition very confusing: she is not extremely photophobic. I don’t know if that is because she is an easy-going, good-natured soul, or if it really doesn’t bother her that much. And she can see some objects in bright light. Maybe she can see them but it just causes her greater effort. I feel quite strongly that I want her to learn to read and write in Braille as well as letters. I read that rods are better at seeing things that move and cones are for stationary objects. That implies to me that her mobility will not be as affected as her literacy. She may be able to get about without any greater mobility aids than sunglasses but if reading and writing cause her frustration and headaches, she is never going to develop a love of the written word. I feel that Braille opens up new avenues for literacy for children. But I guess I am sort of getting ahead of myself here. One day at a time, one thing at a time. It’s really hard.