I really want to write more, but sometimes between work, life and social media engagements (it seems to have a life of its own) it is difficult to sit down to write. But when I visited the blog after a long gap, I realised
(a) there are still visitors despite me not promoting this blog in any way – which seems to tell me that Rb parents are still hunting down any information they can find on the internet
(b) the amount of information available online on Retinoblastoma is very very scarce. There are almost no major digital campaigns around it; and not too many active Facebook pages. The tremendous advances in technology and social media have not improved this much in the last 3 years I have known the condition.
(c) it will be good to let everyone know how normal Suri’s life is (even though there is nothing to write a blog about) so you can expect what is probably coming your way.
He has his routine checkups at Royal London, once every 6 months or so, and he loves going to attend these sessions. In another 2 or 3 checkups, it may be possible to do without General Anesthesia altogether. He has his visual assessment once a year and he seems to have decent vision on his one eye, and very limited vision on his other. Which is what I expected, except that the some element of vision, however bad, on the poor eye was a bit of a surprise really. He will rarely use this vision (mostly peripheral) as he grows up, and this will not benefit him in his daily activities, but it is still there.
He has started at a private school and he is leading the life of any normal school-going kid. I do not know of any accommodations the school has had to do for him but I will be checking with a Visual Impairment Unit advisor in the coming days. The only comment I have had from teachers is that he hates it when he walks into a familiar room with the furniture rearranged, which makes me realise he relies a lot on his brain visuals rather than real-time visuals. It is normal adaptive behaviour for a lot of us with normal vision, and those with limited vision will heavily rely on images stored in their memory for handling objects on their “wrong side”.
I have not prevented him from playing any sports or indulging in any activities so far (even enrolling him in rugby classes), but I have begun to watch out for dangerous activities or tough sports where his good eye could be injured. I have not discussed this with the school though, as they seem not to be doing anything remotely dangerous as of now!
The choice of school is perhaps an important topic to cover, as the right kind of support is extremely important for any visually challenged child. Private vs state school in the UK is a big discussion and I have been through months of agony over the decision. There is probably never a right or wrong, but it maybe worthwhile putting down some thoughts on the next post!
Hope everyone had a wonderful Halloween!