Times like these

I hate bananas. There. I said it. They always start so nice and yellow and inviting, and you get tempted and buy them, and then after a day or two you realize - nobody ate them and you get stuck with bananas in the house, that nobody wants to eat.
Why am I telling you this? Isn't it obvious? I am sharing a deep dark secret here, so you would feel appreciated and loved and as a part of my inner circle you will want to come back. But also so you would understand how rare it is that we found ourselves eating banana-muffins. The truth is we are trying to cut down on the amounts of food being eaten in this house (I am saying we and mean me, I am saying food and mean chocolate. It's like you need a code-breaker here), and so we found ourselves buying very large amounts of fruits & vegetables, because everybody knows - if you don't have chocolate but you really really need some you will eventually eat the bananas. Yeah... No. You secretly eat the chocolate-chips you hid in the baking drawer and lie about it. Oops. Ahhhhhh... No, of course that's not me, it's strictly hypothetical. The thing is, it's not enough to buy them, you actually have to eat the fruits & veg for them to have an effect on anything but your fridge (why am I keeping my fruits and veg in the fridge? because I am from Israel, where it is warm, and you keep everything, including yourself, in the fridge). And we did try, really we did, we started eating more salads, which everyone really enjoyed (okay except Yon who hates all types of fruits and vegetables and is making sure we will not forget that fact for even a nano-second), we ate the mangos, we ate the grapes, we ate the pineapples. I jumped on the opportunity, and the very well known fact that apple crumble is a diet-related cake, and made one. It was finished on the same day. Very diet appropriate. But then we got stuck with the bananas and after we had to throw away a box of strawberries because they've gone bad, we couldn't possibly throw those out too. There was only one solution - I made banana & chocolate chips muffins.
Big mistake.
The thing is I love baking. Love it. And (even if I do say so myself) am very good at it. So I try not to bake, because a) when I start it is very hard for me to stop, and b) we eat a lot. A lot. Which was not our intention for April.
In the last week we had - apple crumble, banana & chocolate-chips muffin, carrot & hazelnut muffins, and chocolate cupcakes.
Each of them had a good excuse (especially the chocolate cupcakes - we ran out of milk on Sunday afternoon, so I had nothing to give the kids for breakfast on Monday - hence chocolate cupcakes).
Today Hidai held an intervention for me, which basically went something like - STOP BAKING! NOW!!!
Still thinking I could sneak in a last batch of pistachio cookies in there though.

I guess since we are sharing all these intimate secrets, it's just fair that you know the truth - I don't have a photo of the apple crumble because it was finished before I could get my phone and take one (and also because I had to stop eating to do so).

But I should also tell you the other truth, I bake when I am stressed, and it seems to me that our lives are spinning out of control at the moment. Every aspect of it is not how or where it should be. Let us count the ways - 

1. Bureaucracy. The never-ending story of life isn't it? Our last bureaucratic hurdle of moving to London is yet to be over, and we are still waiting for all our documents, passports and stamps of approvals to come back from the Home Office, and with each day that goes by I become more and more convinced that we are on our way to get deported. Also, we found out that the nursery charged us "by mistake" (yeah right, is that what we are calling that nowadays?) money for an hour a week that is supposed to be covered by the council. It's not the money, it's the principle of the thing (and the money). On the other hand, I was very happy to get the news that Yon has a place in the school we wanted (the same one Ron is in) for next year! What? It's not like I was worried or checked the site obsessively every 5 minutes from 8am. 

2. Yon. It doesn't go away. We've had a tough couple of weeks with the whole living with Ocular Albinism part of the diagnosis. On the one hand you can ask - why? since nothing's changed since before. The diagnosis just gave it a name, nothing else. And it's true, but it also took away our sense of hope. We were at the doctors for his regular tests, and the girl who does the first eye-test (the snellen chart) looked at us very disappointed and says "there is no change from last time", and all I think was, yes, and there will never be. This is it. This is how every eye check from now on will look, and in fact the best we can hope for is this "no change" comment because it means there are no complications. He did get new glasses out of this visit, electric blue with zebra stripes on the inside, that he chose by himself (almost), and that's it, we have been moved to the non-emergency cases, to the static cases, to those who can come to hospital every six months because nothing will happen in the middle. We have never gone through 6 months of no doctors with Yon, but there you have it - static condition. There is nothing the medical world can do for him. Obviously that's not all, because the day he came back from Easter vacation the advisor from the outreach program came to view him at nursery, and then talked with us. It was, by far, one of the hardest conversations we've ever had about Yon's condition, even more than the doctor telling us the diagnosis. Because it was the first time the full meaning of his condition hit us - the realization that we are no longer able to deny, to hide. We are no longer able to say "we will wait and see". We moved to the realm of "how much help he needs from now on", not "if he will need in the future" but "what he needs now". We moved to the realm of registering him as partially blind to get all the assistance he needs, to the realm of iPad apps to the partially blind, to the realm of magnifier glass to read small prints, hat on at all times to reduce glare, to the realm of teaching him letters and reading and typing at home so he won't need to concur that in class next year, to the realm of special keyboards and mouse. To the realm where you have to tell him why he is the only one with glasses, why he has to wear his hat, why he can't see the damn numbers on the weather app. To the realm of testing him all the time at home, of watching him even more, of being torn even more. To the realm of having a disabled child. Even now, a week later, I can't seem to be able to write all this and not cry.

Trying out the magnifier glass. He didn't like using it, to magnify things, but it turned out to be an amazing sword.

What I find the hardest is understanding. My eyes are fine, I never had a problem with seeing, never had glasses, so I can't understand how it is to have a problem, I can't understand what it is he sees and how. I couldn't imagine that he will react so badly to getting his new glasses which he picked by himself, but he did. He cried, he refused to wear them, he was so miserable, and I didn't know what to do, how to help him. How can you help him when he doesn't see how high the stairs are? How do I help him when he doesn't see the letters in the book? How? I can't. Nobody can. So we hug him and tell him it's all right. But it's not. It's just what there is.
So we scoured the net yet again, and found this great video by a girl named Casey who explains what she sees, and this other video showing the world as a person with Albinism sees it, and we found some others also, and they were all done by young, beautiful girls who lead whole and good lives. And they all talked about the biggest paradox of it - looking "normal" on the outside and wanting to be "normal" and not use any assistance, while needing it and not being able to live without it. And they all raised the question we also find terrifying - how can you not let your disability define you.
No answers here. Just a whole lot of questions, so I added some new things to the blog, because maybe there are others in search of the same answers as us. The blog now has 2 new sections - Ocular Albinism (on the right bar, the glasses icon) that for now only includes Yon's story in full details but I will add to it all we know and learned about Ocular Albinism, and a new section in the overhead bar, of how to survive vision problems, which contains all we learned about dealing with having a child with... You guessed it - vision problems.

New glasses and new hat

3. Ron. Because we can't forget he is here, he needs his attention, his share of love. His birthday is in less than 2 weeks, and it is totally not organized to my standards. The presents are all jumbled in my closet, I don't even remember what I got him and if it's enough. I have no clue what to bake for his class, if he wants to bring party-bags, I don't even have wrapping paper for his presents. I need to buy him clothes. I put everything I have left at the moment into talking with him, playing with him, reading with him. Into making sure he does not feel forgotten. And the worst part of it is, I'm not even sure if it's working.

Ron, a rare picture because he doesn't like it when I post photos of him usually...

4. Money. Because how can you have a hard time without throwing in a tiny financial situation? Don't get me wrong, every month is somewhat better than the one before, but we still have to budget every penny, wiggle and maneuver money around, and worry about every little thing. We are not where we wanted or hoped to be this time of the year. On Thursday I dreamed we won the lottery. Nothing big you see, just a hundred thousand or so. It was one of those vivid dreams, the ones you remember after you wake up. The ones you are sure are real. So I made Hidai go out and buy us a lottery ticket. We had 1 number. But that's an improvement, because last time we had none! 5 more times and we hit the jackpot :).
5. Health. This Spring-no-Spring thing is killing me. Apart from being constantly on the verge of the flu, my joints are not dealing well with all these changes (and yes I am aware of the fact that I sound like an eighty years old, but with the amounts of painkillers I had to take today and the fact that I can't wear high-heels, which I waited all winter to get back to, I don't care).
6. Weight. Self explanatory right?

Well, there you have it. Hopefully you survived reading all that, and got all the way to here. I am sure you want me to say something profound, or meaningful, or smart.
I might have found such a thing but the painkillers are making me see flying zebras so I will leave you with, well, the image of a flying zebra.
But also with the only saying that we live by in times like these (and we have the fridge magnet to prove that):
When the going gets tough,
The tough eats chocolate.