A tonne of bricks...

"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; 

Hello, only me again!

Still not too good at keeping up to date with this am I!?

We've had some wonderful news since i last wrote, Jacob had a check up at the end of September at The Royal London Hospital, and he is cancer free!!! Basically, the swelling of his optic nerve caused by the Intra-arterial chemotherapy, cut off the blood supply to the tumours and they've literally shrivelled up and died. So, an awful side effect which wasn't very common has turned out to be a brilliant side effect! Retinoblastoma is quite different to other cancers in the sense that they don't ever get the "all clear" in all its glory. He will still have to have regular checks as there is always a chance of a relapse, but his consultant Mr Sagoo was rather confident that it is very unlikely that we will see a new tumour grow now. This was obviously very unexpected news. I actually had a bad feeling about this appointment. Shows how much I know!!! I obviously spent the next few days in shock, crying everytime someone said "that's amazing news isnt it!?". Rich said he felt like he was floating, which I think must have been how I felt too. It is such a strange feeling. Obviously besides the first 12 weeks of his life, hospital appointments and cancer treatments are all we knew with Jacob. So to know that life will potentially return to some sort of normal is amazing. And scary. I feel very lost and almost like it's starting a new chapter. Which it is. I just don't know what about. We've not done this part of the story before. We didn't think we ever would. I'm definitely rambling.

Jacob is absolutely loving preschool. He looks so adorable in his uniform. He has hot dinners everyday and I have to make sure I know what's on the menu for the week as he asks me every morning what he's got that day! Getting out of the door by 8.30 every morning can be challenging, especially if he's having one of his less cooperative days. But we are doing it! He's learning so much, and his new key worker is lovely, as are the rest of the girls. They've gotten Jacob a desk lamp for when they do writing etc as he has one at home that he uses when colouring in and we found it helps. I'm one of those annoying mums though I think, as I ask so many questions and on Friday I asked if there's anything I can do at home with Jacob to help him along and to feel more confident as the last thing I want is for him to fall behind. But his nursery nurse was amazing and gave me a few tips and told me a few things they're doing. Can you believe they learn phonics at this age!? I love that he's officially learning now. I know they "learn through play" etc but I absolutely love him coming home and surprising me with things he has learnt. He's informed me that inside his head, is his skull and inside that is his brain. He knows where his spine is and where his heart is, "it's in my chest mummy!" Where is my little boy!?

I've started looking into primary schools. (I actually can't even talk about this without crying.) I have a pretty good idea of where I want him to go, and can't believe that we have to apply by January. FULL TIME SCHOOL?! WHAT! It really does just fly by doesn't it?

My second little person, I've nicknamed her Reagan. From the Exorcist, if you're unsure. Because she is 100% possessed by some crazy little devil woman. She is nuts. Possibly the naughtiest child I have ever known. She's gone back to hating everyone, except me. Yay. She screams and throws/launches/attacks anything within a two metre radius of her tiny, little self if she doesn't get her way. Or I go out of sight. Or just for fun. The attitude is a whole other level of teenager. And she is EIGHTEEN MONTHS OLD. I did discover that her father had a horrendous attitude and temper as a child, so we are blaming him for this one. My mother said I was a delight. Obviously. Haha. Again, I'm sure it's just another phase. Not that it justifies the launching herself backward in a strop, especially when it's onto concrete in the street. Because then, I just have to get her up and give her a cuddle as she has legitimately hurt herself. You think she would learn, apparently 18 month olds don't quite make that connection yet. Don't get me wrong, she is an absolutely hilarious, adorable, loving little thing. To me. And sometimes Jacob, when he doesn't push her over because she touched his cars. Sometimes she can't win, poor doll. She does sleep amazingly though which is great.

How cold is it now?! I got the kids really cute coats this year. I wanted a really gorgeous coat from Next for Alba but it wasn't very practical so she's got a khaki green parka like mummy. Jacobs got a gorgeous mustard parka from Next. I want it in my size!

We are back at the Royal London Hospital next week for Jacobs first check up since we got the amazing news so fingers crossed everything is still the same!!