Registered Blind

We were back at Great Ormond Street today to see Charlotte's primary Ophthalmologist. She had a letter from Prof Cone after our appointment at Moorfields so she was able to confirm the diagnosis of Achromatopsia. I requested and she offered registration for Charlotte. They can put her down as Severly Sight Impaired/Blind based on the expected outcomes for people with Achromatopsia.

I've been expecting to register her for some time so it's not a terrible shock or anything. At the same time, it does feel that this moment has some gravity. The form quotes that registration defines her as "disabled" under the Disability Discrimination Act, so it is quite a big deal the day one's child is legally defined as blind and disabled.

At the same time, I am not really feeling the weight today. This is nothing compared to the way I felt in the early days of Charlotte's impairment. We have known this for so long that this is not unexpected, nor a huge shock. Clearly, it is a path we would rather not travel but I see these legalities more as an opening of opportunities for her, rather than limiting her capabilities. We will have an easier time accessing any available services (not that this has been difficult to date), which will be very important for her education, and we can apply for disability benefits which we will put in a bank account for her as a nest egg for when she is older.

She is also the proud owner of some new eye patches. The Orthoptist at Moorfields noticed some weakness in her right eye in May, then I saw it in some photographs. It's not obvious when you look at her but when you cover her left eye, she is really insistent on uncovering it fast. I mentioned it today so they reported on it. Unfortunately, I said the right eye and I should have asked them to identify which eye it was (consultant pointed that out to me). Anyway, she said there wouldn't be any harm in patching for 1/2 to 1 hour daily and seeing how she gets on. Clearly she (Ch) is not going to like it so she also said that if it is really not working out for us (or the left eye is getting weaker), we can relax about not doing it too. Awesome, I love no pressure medical interventions!

I guess I should go in there right now and get the first patch on her but she is playing by herself so beautifully that I hate to disturb her! Maybe when Emily wakes up and we can all play something together. I think breakfast will be a good time to patch because she likes to eat and then it is done for the day. Poor little thing, it will probably irritate her already sensitive skin terribly. But it was me who asked for this and I would hate to miss an opportunity to do something for her when it is not such a big deal and have it turn into a big deal. She will look less blind if both her eyes move in unison and her vision will be so much better if they are both working to their full potential.

So that's it for today. Quite a lot of meat but no real changes to the bones of this thing.

Future post: thoughts on working mothers of disabled children a.k.a. my justification for getting out of the house and into the office!