Christmukah part 3 - Build-up to Christmas and Yon's eyes

You can feel the Christmas in the air.
The kids vacation started today, Hidai worked from home and have now started his vacation also, and my parents are on their way here, and I spent the whole day cleaning and getting the house ready. Very festive.
But really, all the beautiful lights are on, the iTunes is non-stop Christmas music (drives Hidai crazy listening to the same songs all the time), the gifts are all ready & wrapped (success!), and I have already made gingerbread (4 types, just because... Well just because), Yule-log type roulade, and some brownies (you know, just because it's yummy). Very festive.
We put the tree up on the 8th of December  Originally I wanted to put it up on the first, some of it was me not having patience to wait, and some of it was wanting to separate Christmas and Hannukah and give each of them the respect it deserves. Unfortunately We didn't get to it that weekend (we were too busy shopping for winter hats. God it was so cold that week), so we ended up doing it on the 8th, which was the first day of hannukah and while Ron and I were still a bit sick. Yon didn't really want to help so he just kept breaking all the candy-canes we bought to put on the tree, and then walked around the tree saying "Don't touch the Christmas" while, obviously, touching the baubles on the tree.
Truth is I envy the people with the "grown up" Christmas tree. You know, the ones that have a color co-ordinated tree, that goes with this year's fashionable color scheme. Our tree is a mis-matched mass of decorations that fill the tree in all kinds of baubles in different shapes. sizes. and colours. It's mostly because we bought what they sold at Morrison's in Gib, and also because we try to get a bauble on every branch... We did very well on that front :). This year we only added 4 new baubles to the tree and were really proud of ourselves.
We did buy outside lights for the first time, but because we were unsure how hard it will be to put them on the balcony, we bought the straight-forward ones, and just one type. Never fear, it is already on the shopping list for next year. More Lights!

Tree

We added to that some indoor lights for the kids room and for the kitchen (our room didn't get any decorations because it is going to host my parents who are still not that big on Christmas. We are hoping they will get into the Christmas spirit as soon as they land), some tinsel for the kitchen and the hall, and some "Merry Christmas" signs for the hall and the kids room. Also on the list for next year - wreath, which we didn't buy this year because we live in an apartment and not a house.
But by far, the biggest holiday perches is my baby tree! Hidai and Ron got it for me last week (true, I did have to use the subtle hint - When you go to get your hair cut, you better come back with a baby tree. But at least they did. And some chocolate. And a card), and we put baby baubles around it and some colourful lights and put it in the middle of the corridor so you go past it lots of times every day. So so cute! And also, it's a real tree, which I very much wanted, so now I am more convinced than ever - next year a real tree! (or maybe a pre-lit one. Those are also really cool. Decisions...)

baby tree and card

This year our favorite Christmas song is Walking in the Winter Wonderland, basically because Ron lernt it at choir and performed it twice - once at the Winter Fair in school, and once when they went carolling at N1 shopping center. We came to watch them sing, as it was a session for all schools in Islington, where each school sang 2 songs. Ron's school was one of the firsts to arrive and sing, which was a very very good thing since the whole thing took place outside and it was about 2 degrees Celsius that day. Not really the kind of weather you want to stand around in. Ron was half frozen I think, so he stood at the back and you couldn't really hear him. Also, I think even-though he wanted us to come watch him, he was a bit embarrassed by us (well, I guess it didn't help that Hidai re-arranged his coat and hat, and I called him Ronchuk in front of everyone), so his coping mechanism was to totally not acknowledge us. He refused to even look at us directly, let alone speak to us. We asked him when we got home if he was embarrassed or excited that we came, and he said equally both. Fine, than we will make more of an effort next time to embarrase him more.
Yon coped with the Christmas singing in the same way Ron used to (until this year, when he decided he wants to join the choir  and also announced that he is going to audition to next term school play...) - he cried, and then looked miserable for the whole time, not singing, not talking, and not communicating with anything or anyone. Although he did practice every day for his class's We Wish You A Merry Christmas, when the moment of truth came, he was quiet as a clam. First time in years when he spent half an hour without talking...
Add to that the fact that he still has an irrational fear of Santas, and what you get is kind of a less enthusiasm for Christmas. We are lucky he likes the trees, and the baubles, and singing the songs at home. And the Advent calendar (thanks to that we now know how many numbers he really know the little monster).
His fear of Santas did not go as far as not wanting to see the special message he got from Santa (PNP site. Genius!). We do it every year, and Ron was really looking forward to it, and both of them were so happy to get the "Nice" stamp...
We are also apparently trend-setters! I am guessing the only reason the kids got Christmas cards this year is they were the first ones to give cards in school. Is it not customary in the UK? It was in Gib. Everyone brought Christmas cards. Also, on the last day of term I sent gingerbread trees (with Ron) and comets (with Yon) for the kids, and gingerbread cupcakes with cookies & cream icing for the teachers. I was the only one to give them anything I think... Weird. We also gave cupcakes to the concierge team and cookies to the building's maintenance team because that is what we used to do in Gib and it felt right to continue.
That's it Christmas-wise I think. We are waiting for the last order from Ocado with the Christmas dinner food to arrive, as this year we are going to have a proper Christmas eve dinner, in which although no one tried to kill the Jews, but we will still eat!

On to the second main thing that we dealt with this week - Yon's eyes.
This is so much less fun than Christmas.
Yon has regular check-ups from the time he was 6 months old, glasses since he was 10 months old, and a very good attitude to all of this. His medical record include doctors in Gibraltar, Spain and Israel, and now that we are here we take him to Moorefilds Hospital to have his check-ups. Last time we were there was hard, and in the end our new doctor said that she thinks there is a different problem and that we should do some new test. Of course we said yes, and after some time and some phone-calls, we got an appointment for an EDD (I think. All those long English words, and all those initials...), and after that for our usual clinic. And on Tuesday we had to be at the hospital at 9 a.m, wich meant Ron had to go to school at 8am, to the "breakfast club" and since we were unsure how long it will all take, we asked Tyler's mum for help and Ron went with them after school.
Apparently EDD actually means you hook a 3 years old to a bunch of electrodes in different areas of his head (and then moves them to under his eyes!), and let him watch black and white squares flashing around on a TV set, and in between flash some light straight into his eyes in different speeds. For 2 hours.
Fun right?
It was so hard. You have no idea. We bribed him. We played "find the dancing Zebra" with him. We held him to the chair. We cried with him when he said "I don't like it!!!!" We promised him 10 times that it's over if he just do this thing or that thing (it was never over). It was HARD. He was so miserable when we finished... We took him out of the hospital for some chocolate muffin and juice, before we came back to the hospital for the "usual tests" where he has to say what he sees. He hates this test because, well, he doesn't see. You will never guess that he doesn't see something, that he has a problem, until you put him in that chair and ask him - what do you see? He doesn't. From there we went to wait for the doctor, and of course - we got a new doctor. Not new just to us, one that just started working in the clinic. I am very grateful Hidai was with me, because the minute she opened her mouth and said "oh, it's good that you came in now, this is the right time to start treating his squint" I wanted to just up and go. But Hidai always keeps his cool so he calmly asked her to get us in with our old doctor as she actually READ the file. She did, and we at least got the news from a doctor we trust. So Yon doesn't have a lazy eye, which is the biggest fear with kids that have a squint, and so we don't have to do patching anymore (he had to wear a patch over his good eye for a couple of hours everyday for a while). He would also always need his glasses because he is far-sighted (can't see up close) and because they "fix" the squint, we don't need to operate. All good things.
BUT
(how did Garry Barlow said on the X-Factor last year - there's always a BUT)
Yon has a genetic condition called Albinism, and basically means he is like an Albino, but only in his eyes, and hopefully not in a very severe way. The way she explained it, it's like if you are watching an old TV, so the pixels are not totally sharp, so you can't really see everything clearly. That is how he sees the world. As a result, now, he only sees around 70% of what he should, and because of the glasses this affects his up-close vision less, so he plays on the iPhone without a problem, but won't recognise people he knows from afar. She said it could get better if he learns to control it, and as the eyes develop, but it's not treatable and will never go away completely. In his condition now, if it doesn't get better, he will not get a driving license and he can have problems in school, etc.
We are now waiting for a specialist to explain it all again, and will give us all the statistics and formal numbers, but she verified it twice, and it explains so many things we noticed over the years, that we are pretty sure that's it.
What can I say? It was not the news we were hoping for. It is not good news. In fact is bad news. But at least now we have a full diagnosis and we know what's wrong. We also know that there is nothing we can do for him. The fact that he is the most beautiful, happy, funny child I know does not change the fact that he is suffering. It doesn't really matter that he doesn't know he is supposed to see better, it that he doesn't, that his life will always be harder, that he will always have to work harder, or compensate for it. As a parent you want to make sure life is as easy as possible for your child, and we failed. He is going to have to overcome this. By himself.
With Yon, we find most of the time we are watching him. We are not looking at him, we are watching. Ever since he was born, and more after we started treatments. Watching. is it better? Is it worse? Can we take a photo and he won't squint? etc. We are always watching. But now, every time I find myself watching it tags at my heart strings. Nothing you can do. 70%. Genetic disorder. Your fault. Your Genes. Nothing you can do. Poor poor Yon.
Children and health issues should never go hand in hand, but they so often do. We have yon's eyes, last year we had Ron's teeth. It is always a concern. Sure, no one's perfect, everyone has something. But why my kids?

My kids