"I'm going to ride a motorbike when I'm bigger!" That was it, a huge tonne of bricks dropping onto my chest. Obviously I didn't tell him that he probably wont. Unless he's a passenger. But even then, I probably wouldn't let him anyway. With "big school" becoming imminent as opposed to next year, or a few years, it's in less than two months, I have started to realise how Jacobs vision is going to start affecting his life more and more. Last night we were talking about our friends little girl who'd been to her school disco, Jacob said "I want to go to a school disco!" I said "Do you? Do you think you'll like it?" And he said "no, it will be too dark and loud. I won't like it." That's 2 heartbreaking realisations in 12 hours. No school discos, no riding a motorbike. What next? Obviously I know none of this is set in stone, and who knows what will be available to Jacob in the future, but for now, they're a no. And it isn't fair.
Part of me cannot wait for Jacob to start big school, I know he will love it. But the anxiety I feel over him starting makes me want to keep him at home forever. Or at his preschool. Because I love them for how they've treated my baby boy and can't imagine anywhere looking after him the way they do. He got into the school I really wanted which was amazing. He has a huge Education and Healthcare Plan (EHCP) that the school, preschool and Jacobs Visual Impairment teacher put together along with Rich and Me and it covers absolutely everything from starting the day, to coat peg positions to where he will sit in the classroom. So I know they know all they need to know. And once Jacob starts, they will see his isn't what he seems on paper. On paper, I think he can be absolutely daunting. It isn't until you meet him that you realise how he doesn't actually let his sight or lack of, affect him.
I know it's been a LONG time since I last wrote, Jacob is still stable. Our hospital appointments are 3 monthly at the moment and hopefully will only get further apart. We've had some behaviour troubles with Jacob but I think it's down to all the change going on, leaving school, starting big school. Alba is a lot more "involved" now so he absolutely tortures her and has become very protective of all of his stuff. Another tricky phase in life with two toddlers I'm sure. They have brief moments where they're the best of friends and it's absolutely lovely. But they are few and far between. We've also had chicken pox since the last post, but they both coped really well with it. Thank goodness! I will write again soon!
A few photos from recently;
