It's been a year

Yesterday was September 25. Last year on September 25 was the first time we ever heard the words Ocular Albinism. Last year on this day we took Yon to our first regular eye checkup in London, like we did every three month wherever we lived, and after about 5 hours of tests and waiting got to a doctor who said "I think there is more to it than that". September 25 2012 will forever be the day we embarked on a new road, one we never anticipated walking in. As if someone ever does. September 25 2012 was the day our child got the Special label now attached so firmly to his name. It wasn't the horrible day of the EED test. No, that was done three months later, in December 2012. And it wasn't the day we got our diagnosis. No, we got the last formal stamp in April 2013. It wasn't even the day we first started suspecting Yon has vision problems, or the first time we took him to see an eye specialist in Spain, in March 2010. Somehow out of all these options, September 25 was the day our life changed forever. Because that was the day we entered this new world. Though we didn't know it at the time. Looking back today I can hardly comprehend that it's been just a year. I can hardly remember not associating Yon with Ocular Albinism. And on the other hand, in trying to write this paragraph I discovered that I can hardly remember those days and those tests. it seems repression, and not diamonds, is a girl's best friend.
I don't know how it is when you get the diagnosis in an early stage -  in the womb or at birth or even after a year. With Yon there were tests and doctors and patching, and glasses and more doctors, but we always had hope that "it will one day disappear". We looked at him all the time, but just at his eyes. We never judged his behaviour or his physical development through his disability. Because we didn't know he had one. But we also never gave him the help he needed because of his disability. Because we didn't know he had one.

When you get diagnosed late, and age three and a half to get the formal diagnosis is quite late, you question your parenting, the attention you gave your child, the cues you must have missed along the way. And you have the guilt. You can't escape the guilt anyway in parenting but there is a special kind of guilt that you feel when you sit across from your special needs advisor and she looks at you and say "but why wasn't he diagnosed before???" there is a special kind of guilt that hits you when you are told "it's the mother's genes that are solely responsible for his condition". There is a special kind of guilt that you feel right after the moments when you think to yourself I half want him to be more blind, because then he will get the help and attention he needs.

But the main problem with late diagnosis is the time. The time you don't have. You don't have time to adjust, to stop, to breathe, to feel. In cases like ours, where there aren't any life threatening implication, we should have had the time, we should have had less guilt. But when we got the diagnosis we were fighting the system from putting more labels on the him, we had to explain away things we didn't know about, behaviours we weren't aware were problematic, and a diagnosis we still didn't understand ourselves.

Sitting here and looking back at the last year, I think we somehow managed to squeeze in three years worth of learning about vision impairments, Albinism, Ocular Albinism and Autism. But I also think we spent most of the year feeling guilty, wishing it away, feeling sorry for him, and connecting everything he does, everything he is, to his condition. We've spent most of the last year watching him and worrying.

It is quite symbolic that today, one year after, I went to talk to Yon's Reception teacher (and if you've been here before you would know how much I dreaded Reception, and how bad and worried I felt about how things have started). I wanted to know if she thinks he is ready to start full days next week, if he is eating, if he is talking, if he is connecting with other children, if he is playing with other things except animals. I wanted to see if we need another meeting, more one-on-one, more work.
It is symbolic I think, that after a year of worrying non-stop; after I took my first steps on a road that kept me sad and angry and worried with every step I took, that taught me to never go into a meeting expecting anything but the absolute worse, that kept me up more nights than I care to admit; after I learned to see my son through the eyes of his disability, that the first thing she told me was "he is just like every other child".
She said he is eating, he is moving around independently, he is going outside to play, he has friends, he is talkative, he is playing with other things, he even did some painting, and got angry with some kids that annoyed him. A lot of kids, she said, has this developmental jump when they move from nursery to reception.
You don't have to worry so much.

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Why life is like baking

Life is like a box of chocolates. I don't think there is anyone alive who doesn't know this phrase, and when I started to write this post this is what jumped to my mind, but the truth is (and with the risk of alienating a few of my approximately ten readers) I hated the movie, and I find this phrase insulting to all chocolate. Life really isn't anything like a box of chocolates. Mainly because chocolate is what you use to make life bearable some days, but also because unlike in life, if you just flip the box, you will know what you gonna get. You might not like what you get, but it says right there on the box which one it is. No, for me, life is like baking. Because baking is unpredictable, baking is messy, baking is where you can follow a recipe to the letter and still end up with crap. Just like life.

Box of chocolates

Baking has been my passion ever since I was very very young. Younger, I think, than is acceptable these days, and it became a very big part of me. A part where there is quiet, room to breathe, and somehow a place to dump everything else - having a bad day? Bread making that includes kneading dough by hand is a wonderful way to get over that. Depressing day? there is nothing quite like a chocolate cake. Kids making enough noise to wake the dead? Out comes the mixer. Baking grounds me, gives me a sense of home, of creation. You take some flour, sugar and eggs, and you get something wonderful that wasn't there before. Just like in writing. I guess in some regard that is why I like writing - it gives me the same sense of "hey you created something out of nothing".
Also, you are never left without an answer to the "what do you want for Christmas" question. You can always have one more gadget, or special pan, or book. I have about 36 baking books (and not even one cookbook), and that is only because last time we moved Hidai made me throw out some (some nonsense about the movers not being able to lift the boxes), and I think every baking gadget known to man (until this Christmas, when I will HAVE to have something new of course).
But like everything in life, sometimes you are lost. There are these periods where everything is just too much and too overwhelming and somewhere along the way you discover that you got lost. You no longer remember how you got here, or where you were heading. I had one of those periods just now. I wanted to say "in the last month" but it wasn't true, so I wrote "in the last couple of months" but I am not sure that one is true either. I am not sure when I started being lost, I just know that last week when I watched the Great British Bake Off (the one and only baking show the kids will watch with me. And when I say that, what I really mean is Ron & I sitting on the couch watching TV, and Yon sitting on the carpet in front of the TV "baking" with his blanket. Yes, it is crazy as it sounds) I saw them baking happily in the tent, and it hit me like a ten-ton-baking-chocolate-block - I haven't baked in a long time. Also it dawned on me that I might want to tryout for the show next year, but that's a different storyline.

Watching bake off

I baked a little before my parents came over, but did nothing since then. It had been some three weeks since I last went into my kitchen. No, it was worse than that. I got 2 new baking books from my parents when they arrived, and I haven't even looked at them. I haven't sat down and studied each recipe, imagining doing it, planning how to tweak it just a little so it will be perfect for me. I haven't even found them a proper place on the shelf.  Last week I also got new kitchen scales, from Ozeri, to try and review, which after some preliminary oooohs and ahhhs I stuck in the cupboard and ignored completely.

New scales

I opened the books immediately (the next day) to check them out, but it still took me until Sunday to actually bake, because I was ill for most of last week and because as it seems every recipe in my new book, that is actually an adaptation of olden-days recipes to modern times, needed at least 6 eggs and either one kilo of cream cheese or of double cream, ingredients that I am not so sure were that handy in the olden days, and that unless I am in the midst of a baking craze, I don't ordinarily stock in my fridge. Unlike most of everything else. I do keep a very nice stock of baking ingredients, that can (and was) comparable to that of a small bakery. What? you never know what you will want to bake just this minute. Always be prepared (and also I get regular deliveries in the form of my parents, and if I am on a diet than it accumulates).

That is how it came to be that on Sunday afternoon, after watching Arsenal win a match for a change, I got my new book and my sexy new scales and set out to bake some chocolate chips cookies. That only required 2 eggs and no cream. It is a weird experience, baking when there is a lot of people and noise around, and I really did gain a new respect to the Bake-Off contenders who has to do that every week. I know they say that baking is a science and you have to follow the recipe to the letter, but I never bake anything exactly like you're supposed to. I have to change it, and every time I do it a little different, and never write it down. Didn't I tell you it's like life? I am not good at following orders. Or straight lines.
The scales were amazing though. I mean how can you review scales? If it's human scales, than accuracy is never a good thing, and if they are kitchen ones, than you want them to be very accurate, but as I always use the very accurate measurement of "it seems right to me", than all I can say is - they look so sexy, everyone around the house thought I bought a Kindle :), they are easy to store, operate and they respond very quickly. I love them, but I'm shallow and it's mostly because they are just so damn pretty. But I digress (naturally. Has to happen at least once a post).

Baking

Going back to baking, even if it was just one batch of chocolate chips cookies, it got me thinking about how some things are more than what they are, how we need those things and those places that reminds us who we are, where we belong. It might not be the most modern thing to say, but in some regard at least I belong in my kitchen, I belong in my baking. With every cookie I made I regained a little bit of myself back.

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On being left behind

We are going through some things this past few weeks. It is one of those times when you have things bothering you that you can't really blog about, for various reasons, mainly because after all is said and done, a blog is a public space and not everything is for sharing, and not everything is for sharing at this particular moment. But these things happening caused me to be stressed, and as a result I wanted to write. In fact I have about 5 posts that I want to write, and I had every intention of writing each and every one of them, but every time I sat down in front of my computer this last week or so, I wrote two sentences and then froze. I didn't know what to write, or how. It was a completely new experience for me. I felt like the biggest cliche out there, saying "but something like that has never happened to me". After all it wasn't any of the multiple things that I usually go through before I start writing. It wasn't a case of writer's-block, it wasn't a case of "oh no I need a post for tomorrow and I haven't a clue", and it wasn't any of the things that happens after I finish writing, because it wasn't a case of "no one will find this interesting enough to read". I know all those fears quite intimately. They go through my mind at least three times a day. More if I actually try to write. In fact, after I release a post into the world the first thing I do is shut down the computer (and every other internet related electronic device near me) and try not to think about all the people not reading my posts. If I could, I would let Hidai (or any other unsuspecting volunteer) release my posts for me. I am not good at letting go.
I also tend to hyperventilate, nag about all the things that can go wrong, and walk around restlessly through the whole process.

Working (or playing Candy Crush)

And if it's tough with posts, you can imagine how much I like letting my kids go anywhere without me. The only good thing about my neurosis is that they are predictable. I am like a well oiled clock that way. A cuckoo clock maybe, but still a clock. For years I never took the kids anywhere, except home. Needs to go to nursery or school? Daddy will take you. Needs to go to an after school activity? Daddy. Needs to go to a friend's house? Yes, I know you know. Daddy. The problem is I can't leave. I don't mind sitting outside and waiting. I don't mind being the creepy parent who hides in the bushes (I am guessing you have seen New Year's Eve, and know who Piper's mum is. If not, you probably found that less funny). I just can't turn my back and go out, leaving them there to fend for themselves in the cold-cruel-crazy world. I can't be sure they won't be lost or hurt, or insulted. I can't be sure there will be someone to look over them, to notice them. I can't be sure they'll be fine until I come back.
In a different lifetime I used to translate articles for university students. I translated a few hundreds of articles, but I only remember one of them. And this one was about parenting. I remember it because it was about how a mother's job is to be left behind. As mothers, as parents, every day we lose a tiny bit of our kids - they start walking, dressing themselves, feeding themselves, reading, writing, they learn how to operate a TV, and they leave us. Just a little bit more. It is our biggest job, and our toughest one. Because being left behind is the worst feeling there is. You are not needed here anymore.
But there you have it - If we do our job right, than our kids will be able to leave us more easily.
Some of it is metaphors (or at least things you can ignore their symbolism), and some of it is real live leaving. Like taking the kids somewhere and leaving them there. Or maybe they leaving you and going inside without a backward glance.

And I am not good with letting go. In fact with Ron I was really bad. I remember the first time I put him in nursery. I cried the whole time. And bought a new printer. But the years, some Rescue Remedy, Hidai holding my hand and a lot of practice made me feel like I am getting better. Or maybe it's the understanding that I have no choice. He will hate me forever if I try to follow him everywhere. And you get through not going with him to the first school trip, or the second one, or the beach-day. You get through 10 first days ok, you get through picking him up after a half-term football camp (just days one. Not one with nights). And it lulls you into believing that you are stronger, that you can do it.
Than comes the first day in year 4 and you manage to go through it all without crying, with only a mild panic attack, and without running to your child crying loudly "Oh sweetie pie, my baby, I've missed you so much!" the minute you see him come down the school steps.

Follow the purple line and you'll get to reception

And then you have Yon, a typical second child, and somehow I had the fantasy, or thought, or dream, that it is easier the second time around. Especially this year, as we've taken him to visit his new Reception class a few times before his first day, we've talked about it non-stop and mainly because he really wanted to go. He wanted to be in "big school" like Ron.
And maybe it was because I was very preoccupied with other stuff. But his first day arrived, and for the first time in our lives as parents Hidai didn't take a day off to be with me. Because we forgot. Because we didn't think it would be hard. Because Yon is a second child, and it is supposed to be easier. After all we already know that nothing bad is going to happen, that it is just three hours for the first week, that he knows the teachers and the classroom.
I can give you all these excuses. God knows I gave them to myself. But then we got there on Monday for the first day, to the new classroom, and it was full with kids and parents, and noise. We stood there, Hidai & I in the entrance to the classroom, Yon had already gone to play with some animals and waved us goodbye, and we looked at each other and in that moment we knew. We can't leave. We can't turn our back and leave our baby in there alone.

FIrst day, first ten minutes in reception

That is the moment when we lost one of life's better fantasies and learnt one of it's harder lessons - it doesn't get easier.
We did leave of course, but not before we talked to the teacher, the 3 SEN assistants, both the school and the Children Centre head teachers, and the deputy head; and we still spent a couple of minutes standing outside and picking in through the door-window. We left, just like we left Ron in year 4, just like we left both of them on Tuesday and on Wednesday. We left because he had a lovely time in Reception, because he was talking to another child, because he did everything we were worried he wouldn't - having fun, communicating, sharing, seeing.  We left, because there was nothing more to do, and we didn't have any more excuses not to.
As I am sitting here writing this I am thinking about my boys growing up, about having to let them walk to school alone, about letting them spend nights out of the house, I am thinking about one of the bloggers I love reading, whose daughters are about to leave for uni, about my parents having three kids in three countries (and soon continents) and having to say goodbye every time, and I am not sure I can do it. I am not sure I am strong enough to let them go. To be left behind.

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tiredness and inspirations

It's been a heck of a few weeks here at Orli-land. Not all of the reasons why are blogable, and not all of them are related to the fact that my parents are here (who, just because some people weren't clear about it - pre-approved the post I wrote about them. In fact, not only did they found it funny, but they informed me that I left out some of their more "colourful" behaviour. Yes, making fun of each other helps us survive the visits), and the truth is I am tired. Just tired. Sometimes it seems like there will never be an end to all the setbacks and I am tired of bashing my head against a brick wall trying to see who will break first. I am starting to feel like I am cracking. I know, I know - think positive and all that, but I think the only people who can think positive are the people who get enough sleep and chocolate, and that isn't me at the moment. Now, I know why I don't get enough sleep, but for the life of me I can't figure out why I don't get enough chocolate to be honest. Maybe because I'm afraid if I start I won't be able to stop eating it. As I am typing this I am envisioning myself eating one of those Lindt Lindor Sharing bags and not sharing. Last week Ocado sent me an email informing me that we have a one year anniversary (Ocado & I, not Hidai & I) and they are giving me a chocolate discount. How can you say no to that, right? So I bought this amazing Lindt box (yes I love Lindt. No, unfortunately they don't pay me to say that. But if any of them is reading this, I am willing to take my payment in the form of chocolate money), it was finished within 10 minutes. True, I wasn't the only one eating it, but you get my drift - chocolate. And lots of it.

Before 

After 10 minutes

I digress of course, because that is what I do - never one to follow a straight line, not even one that is inside my head.
I was talking about tiredness, because this is where I am at this moment, and most other moments if I'm honest. This morning I actually woke up even more tired than I was when I went to bed last night. It seems like the turbulence that is living inside my mind is becoming worse, or maybe it's just because I wrote the post about all my OCD tendencies and I am more aware of exactly how many I have nowadays, but life just seems too... Messy. On top of everything else, the todo list just gets longer and longer no matter how many items I cross off it, I don't even want to think what I will find when I check my laundry baskets tomorrow morning, I am behind on reading, commenting, writing, and all other blog related tasks, this is in fact the post that was supposed to be written on Tuesday for Wednesday, and before I started working on it, I found myself writing apologetic tweets, comments and mails because I missed mails, I haven't read posts, I haven't answered comments. I don't remember the last time I took a day to myself, the last time I read a book, the last time I sat down and just felt in peace.
Actually, I do know when that was, about nine years ago.

a very tired me

Nowadays I look around and all I see is things that need to be dealt with, responsibilities, and balls in the air. So many balls, and hand-eye coordination was never my strongest suit.
And it seems that the main two, also known as my kids, are threatening to be the first to fall.
Yon is sick and tired of being home. He is ready for school with a capital everything, and is super excited about wearing the uniform, going to "big school", having friends and routines, and more than anything, he doesn't want to be home alone with me anymore and is missing his Ron. I don't understand why the school has to do home-visits, and why those home-visits have to be in September and delay the start of the school year. But he starts Monday (at last), and this week we took him to see his new class so he will know the way, the playground, the toilets, etc. He almost cried when we told him it's time to go home. So most of the time these days he is cranky, hooked on electronic devices, and bored out of his mind. On top of his carrying his bed wherever he goes, he has now moved to a daily screening of The Lion King, including a daily crying session whenever Mufasa dies (please don't think I am heartless, but this is the same child who watches real animals kill each other on YouTube for fun), and a reenactment of the whole movie with his own animals.

Ron started school and had a complete and utter melt-down. It is not about the school, in the sense that there is something wrong, it is about the whole getting back to routine after a long holiday, the pre-teen existence, and the effort he puts into his school-life. Ron is one of those kids who has to be perfect at everything. I know it is trendy to say "perfectionist", everyone is these days, especially when it comes to job interviews (well, not everyone can be like me and say their worst quality is their dislike of authority figures and hearing criticism), but Ron is the real deal. Everything he does has to be perfect, he has to be perfect at all times, everything is a test and has a correct answer, and on the off chance he gives a wrong answer to anything and for any reason, he will beat himself up for hours, or days, or months. So he gives 150% of himself in school. He has to get every question right, volunteer for everything, play with everyone, etc. He HAS to be perfect.
And he is. But then he comes back home, and he can't hold it anymore. The first week of school, when they weren't really studying yet, he did all that and without having his routine to fallback on, was simply too much for him, and he spent his time at home arguing with everyone, fighting with Yon, talking back, and being generally grumpy.
So Monday I let my parents go pick him up from school, even though it is usually the only time you can get him to talk normally about what happened in school. Once we've reached the perimeters of the house he becomes this snarly tween who barks something about an iPad seconds before he closes himself in his personal-space corner under the bed (it's a bunk bed. He doesn't sit under a regular bed). And then it happened, that one tiny moment that reminds me that it is not all that bad, that I don't have to hide under my bed with my hands over my head. Ron got elected to represent his class, together with one other girl, in the school council. He got more votes than every other boy in class, with more than half the kids voting for him. He gave a speech why he should be elected, in which he said he is friendly sensible and confident, which he is. I know it might not seem like such an amazing achievement, but for him it was. He was so proud, he was very afraid they won't want him. And for me it was, because whenever something like this happens I first of all am thankful he has Hidai's popularity genes and not my unfriendly ones, and second of all think about a child who has moved 3 countries, who only got to this country last year, and who has more ambition and determination than many adults I know. I think of my little man, who goes for what he wants in life, without ever hesitating or giving up, and I am in awe of him every time. I didn't know he wanted to be on the school council before he went for it, but thinking back I really don't know why I didn't think he would want to. He didn't tell us he will try to get elected. He just went for what he wanted, and got it.
He is, every single time, my inspiration.

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Family visits - oh no they're here again...

"What time is it?", "When did they say the will get here?", "What's their flight number again? What do you mean they didn't give us the flight number? Why are they so irresponsible?", "Did they call already to let us know they landed?". You would think we were talking about teenagers on their first flight alone somewhere, but you'd be wrong. Dead wrong. We were talking about my parents, who visit every 3-4 months, and have made the trip from Israel to London many many times. More than we have. But they still don't give us their flight number.

Visits. If you've never lived far from your family, you would think I'm crazy, probably that I'm exaggerating, and more than that you will look around you and say - OMG. Thank God I don't have to go through that. And if you have lived far from your family and had to endure them -The Visits, tell me that you haven't uttered those same questions...

They travel light

Pre-visit.
A Visit starts about two months before the actual arrival time. It starts innocently enough with a "You didn't send us the shopping list for this time" I know. It's because it's still two months to go. In this moment in time I really prefer to not acknowledge that you are actually coming. Also, I still haven't manage to finish everything you brought last time. I promise I will "get right on it" and they ignore me and start buying things like crazy. We then move to what will be our main topic of conversation every call - "what do you think the weather will be like? What do you think I should pack?" To which there is only one correct answer - freezing cold. When you live in Israel, the weather in London is always considered winter. 20 degrees Celsius? winter. 18 is getting them to coat level, and below that it's snow-gear. "But what are YOU wearing?" I am wearing a short-sleeved everything because we are in the middle of a heat wave. How would I know what I will be wearing in two months time? "So do you think I need a coat? which one?".
As the weeks inch closer to the arrival date we add the entertainment issue to the mix "What do you have planned for us?" Ahem... Nothing. I learnt my lesson way back in 2008 when I really really tried to plan a family vacation in London. It was a disaster that almost cost us the relationship with my parents. Since then I limit my planning to one event per visit. "do you think Hidai will take days off?" Sure. Because we didn't just finish six weeks of summer holiday, where he took his time off, and his project is going live this month (tfu, tfu, tfu). Of course he can take more time off to spend with his in-laws. In fact, he is looking forward to it. "Will you come shopping with us? We didn't see you enough last time we were there" Sure I will. And so will Yon, whose school year starts on the 16th. And we all know how fun taking a four years old shopping is. No? oops. My bad. So we'll go after the school year starts. All the shopping you can do between nine to twelve pm.
From entertainment we move to communication and transportation - "do you think we have enough credit on the british sim-card to call you when we land?" no. Because last time we checked you only had 8 pounds, so obviously that is not enough to text me from Heathrow with. "can you top us up a little? So we'll have money to call. Just put a fifty there" (I will leave to your imagination my answer to that). "And do you think we have enough money on the Oyster to get to you?" Yes, because you have auto top-up on your Oysters. You can go to the moon and back with them. "And will Hidai come get us from the tube station?" no. because he hates you. It's like every time is the first time.
But I do have to hand it to them, they stopped asking if I can read Hebrew on my British iPhone, because, you know, you didn't buy it in Israel.
And then we add the last topic - the food. "What are you making for us this time?" "You never bake for us" "You still owe me bread pudding / cheese cake / lemon meringue pie". Cheese cake will be bad for your stomach, you don't even like lemon meringue pie and I know I promised bread pudding, but I don't bake when you are here because I spend my time with you... But a few days before they land I give in and bake around four different types of sweets, and then it's "but we are on a diet" "you know we can't eat this kind of food" "why didn't you make me....."

First day at school

The visit.
The visit itself has a rhythm we perfected throughout the years. And it goes like this...
My parents can't start the visit until they unpack. The two suitcases full of food and other necessities they brought from Israel. Kitchen usually looks like a bomb went off in it when they take out more and more things. They are like some sort of supermarket/pharmacy Mary Poppins, and I keep waiting for the time they will have a coat rack in their suitcase. When you think there can't possibly be anything more there, they move to their room and start unpacking the bottomless suitcases, and move to the "we've bought a few bottles of pills with us". So if any one is in need of any kind of medicine known to man, contact me. I'll give you a good price.

Unpacking

No need to buy food for the next year or so. Or at least until the next visit.

From there we move to the electronics hub formerly known as our hall. It was once a nicely organised place for keys and post. Now we can land a spaceship from it, and whatever you do - don't press the red button.
I have to admit, I like my house organised. Very organised. I have married a guy with some OCD tendencies of his own, and raised two very order-minded kids. Seeing my house in this state is killing me, so we gave them our room and we keep the door closed at all times. Out of sight - Out of mind kind of thing.
Having your parents in your house for more than a few hours has an interesting affect - it makes you lose some twenty odd years, and you go back to being 16 again, with your parents "giving advice", "asking inquisitive questions and showing interest in your life", "dispensing helpful hints" and "not at all criticise your life choices, your clothes and the way you raise your kids and run your home".
As entertainment goes my parents are really easy going. As long as you spend every waking minute doing exactly what they want and stop for about ten snack-times. Every visit has to include - three visits to Primark, one to SportsDirect, a purchase of one electronic device, four visits to the 99p shop, a visit to Sainsbury's, and two fights.
We try to spice things up, and sometimes have two fights and one argument.
I'm kidding.
We might have two arguments and one fight.

First visit to Primark - done.

But seriously, my parents are very easy going people, they will be happy to criticise the movies I've prepared, the TV shows I like, and the way I spend my evenings before opening their iPads and going on a Candy-Crush marathon while comparing how much we pay for every thing (how am I supposed to know exactly how much my toothpaste costs?).
And last but not least, how can we forget the "end of visit countdown", where everything is measured in "how many times we'll do it again before we leave". Only 12 more walks to school. Only 2 more visits to Primark. This time next week I'll be at work...
Sure you can understand that, but it starts the moment they land at Heathrow.

Post-visit.
The house is suddenly so quiet when they go. It's too empty. Too quiet. We never say goodbye without the next visit already decided, and it never gets easier to see them go. Not to us and not to them.
Having said that, five minutes after they are gone the room is scrubbed clean, everything is back to being tidy, and we have one month before it all starts again...

That was taken before this post...

*This post was sponsored by my parents, who I love to bits and paid me with half a supermarket. Any reader in Israel who encountered a shortage in food supply - I am sorry!

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The left side of the road

Today was Ron's first day at school. He started year 4, so it wasn't supposed to be a big deal. It is, after all his fifth "first day of school" and with 5 "first day at nursery" before that, you would expect it to be easy by now. And for him, it is. It's his second year in this school, he knows the kids, the teachers, the lay of the land. He was very excited and nervous and happy to go back to school, and after we handled the "he's grown a whole inch during the summer and now has nothing to wear" crisis, he had organised everything a full 24 hours prior, just in case.

School Ron. Looking very anxious. Yeah. Right

When we were standing there on the playground watching him go in, I was fine. I wasn't disappointed that he didn't look back, because he did, and he waved. I wasn't too worried or sad to see him go inside the school. Not like last year, when he was completely new in London, in the school, in the class. We waved, bought some new school jumpers for him that would actually fit, and left the school toward the bus.
My parents are here for the month of September, so they, Yon (who starts his school year on the 16th) and I went to Starbucks and to do some shopping. Yon was devastated. He is not used to being home without his Ron, but apparently it's nothing a chocolate muffin, grandparents attention and some "stuff touching" couldn't cure, and by the third shop he was once again his usual chatterbox.
But I found myself anxious. What if Ron isn't ok? I couldn't shake the anxiety that my baby is having a bad day. And when the battery on my phone died midday, I was starting to panic. What will I do if the school is right this minute trying to call me because something horrible had happened to Ron and I won't be there to answer??? Hidai is in a meeting, I am not at home, my battery is dead, and you know this is the exact minute he will fall / fight / get kicked out of school. Yes, I know it's irrational, and I know I did not have to insist that we all - me, Hidai, Yon and my parents - go pick him up from school, but I couldn't help it.
He had a fab day, if you want to know. Why, did you think otherwise?

It made me think about anxieties and fears, and how my life is full of them now. When we moved to London it was after a very tough period of our life, where I learned how fast and hard things can deteriorate, and how little control we have over our lives. A few months ago I read this line in a blog I can't remember the name of, about how only bad things happen quickly. Your whole world could crumble with one phone call, your sense of security gone, your ability to sleep at night, your health, your home. Every thing you worked for, can be gone in a span of five minutes.
Building it back takes time. A long time. In some areas we are still working on it. But I thought, I had the crazy fantasy that moving to London and building everything back will instantly heal all scars. But how do they say in one of my favourite movies of all time - Kong Fu Panda 2 (I can not go up any flight of stairs without mentally reciting - "my old enemy... Stairs!") "Scars don't heal. Wounds heal. Scars? fade I guess". Well, fading takes time. More than a year apparently, because they are still here. All you need to do is look a little bit beneath the surface and you will see them, the little habits I picked up when I wasn't sure where the next blow will come from - obsessively checking the mailbox (every single time. And I mean when I leave the house to go pick Ron up from school, and 30 minutes later when we return); making Hidai text me before he calls with a "everything is fine. Just calling"; Letting Hidai deal with unrecognised numbers on my phone, open mails and post from the bank or every other official looking envelope. I get cold sweat whenever I see a letter addressed to me in the post.
I know it sounds crazy enough, but believe me, those are the more normal things, the ones I am (almost) not embarrassed to write here. There are more. Far more embarrassing.
I told Hidai a few weeks ago that I can feel it, the anxiety, it's actually palpable. I can feel it lurking underneath the surface, just waiting for me to take the wrong step and fall again. For me it is like driving on a road with a mountain on the one side and an abyss on the other. It is a real road I am thinking of, one I drove on for many years on my way to Uni. It is a beautiful road that is carved inside the mountain, in one of the most beautiful parts of Israel. It is a narrow road, full of unexpected turns, and when I think of it now, I think how some people, they drive more to the right, close to the mountain, while others drive on the left, closer to the abyss. Every wrong turn, not even that, every hesitation, will send you free falling down. How I wish I could be one of those right-side drivers. One of those people who says "it will never happen to me". One of those people who feel safe and secure in their world. But I am a left-side person. I keep looking down. I know what lies there and I know how hard the climb back is. There are days where I can feel the small stones on the side of the road falling down, where I can see the narrow escape I've had.

Not the road, but the same principle

There is strength in knowing you've survived. After the dust settles there are lessons learned, life changes, priorities sorted. Difficult times teach you more than a thousand hours in a classroom (and I should know, I've spent a few thousand hours in various classrooms) about life, about people, about love and loyalty, they make you grow up, you discover things about yourself you didn't know where there, you appreciate more, and learn more than anything I think, humility.
But they leave you scarred forever, and always on the left-side of the road. They cost you parts of yourself, time you can't get back, money that was lost, relationships that couldn't withstand it, and more than anything, they robe you of your sense of security. Of denial-land.
As for me, I would like, just once, to pass my mailbox without opening it.

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Dreadful Days - 06/09/13

Sorry I am a bit late. I was supposed to open the linky at the first of September, but with it being the start of the school year and everyone excited and happy, I thought there is no place for the less good side of things. Then my parents arrived for the whole month, and I thought I don't have time to do the linky. But I guess the real reason was that I thought no one will come and I will just embarrass myself and how awful it will be to be the only one here...
But here I am, because I've had a wake-up call from Steph who asked about the linky, and because today I have had one of those days. One of those days the linky is for. And here I am. It is 1am and I am sitting here writing and opening the linky. Because I need it. I need understanding. I need to know I am not crazy (although there are a few pieces of evidence to the contrary).
So, Dreadful Days linky. If you are here and you are new, welcome! This linky is a place to link posts about those less-than-perfect life-moments. A place to get a hug (a virtual one. Seriously people), a sympathetic ear and understanding. There is no judgement here (thank God for that. I am after all, crazy number one), just us.
Please link up, tweet, Facebook, comment, send a dove, signal from the roof-tops, morse-code it.
The rules are simple -
1. Link whatever you want, old or new, about anything you want. Except the sentence "I know there are people worse off than me". Yes, there probably are. But it doesn't mean you don't have a right to feel bad about your things.
2. Don't judge others. Everyone has a different dreadful day. Even if it is having to do laundry.
3. There is no place for patronising, belittling, or meanness. No "you should be grateful for what you have", no "other people have bigger problems" and no "I swear I love my kids".
4. Please visit other people and comment. We are here for the love and support.
5. Have fun :)


Life isn't just rose-coloured. It's multi-coloured. Seeing, acknowledging and loving all the colours doesn't make you negative. It just means you're not colour-blind.

<div align="center">
<a href="http://londondegani.blogspot.co.uk/2013/09/dreadful-days-060913.html" title="Dreadful Days, Orli Just Breathe"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjevVDlX3cNpt9j7BTia985W9E5pUa2q_Goyy7HezDtllylMQ6wckC0GuVb6a7G3vb1B96gEU2gFL_xYVYnqFz5a5m5ZOFA0sw5JYrasvQscvqLsafTJi53iz8omiwc__m6uQQ-6puDTuQ/s1600/dreadful+days+150.jpg" alt="Dreadful Days, Orli Just Breathe" style="border:none;" /></a></div>

For my part, I promise to read, comment and tweet about your posts.
Hope you Join me!

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How do you take the microscope away?

Yon hates haircuts. I don't know if it is related to his vision problems or not, but it doesn't really matter, does it? A lot of the things Yon does are a sign for his vision problem if you are looking for that, or a sign of autism if you are looking for that, or a sign of asperger if you are looking for that. If you keep looking at him, in every single day you will go through all those diagnosis, and more. Why does it matter what he has? Why should it? A few months ago, while we were just finishing all the "is he or isn't he autistic" discussion in Nursery, I was told that it does matter, to know where his behaviour stems from. And sure, I can understand that. To a point. I really would like to know where it comes from, but it doesn't really change how I need to deal with it. Ok, so because he can't see clearly (which I am never sure how much he does) I should let him just not drink out of a cup? or I should not deal with his habit of putting things in his mouth? Or I should deal with it differently than I would have had he been autistic? I don't think so. I think you deal with it while pushing the "why" to the back of your mind, because for me, if I don't do that, I can't help him as I should. Why? Well, because although parenting a child with a disability makes you face so many challenges you didn't even know where out there, one of the biggest challenges I have to face is the pity. No, not other people's pity. Mine. I pity him. He is so cute, and small, and has that innocent look (mostly you fall for that one when you don't know him enough to know better), and when he does something he shouldn't have, he has a tendency to look at you with his most innocent look and a million-pounds smile that shows off his one dimple, and you look at him and think - But he doesn't see anything. How can I be mad at him? How can I demand the same things from him that I demanded of Ron? How do you parent a child with disability? How do you make sure you act "normal" all the time? How do you discipline? When is enough really enough?

I struggle with these questions every day. Yon is my baby, he is the youngest and the last; he is Ron's younger brother (And with Ron as an example to look up to, I am not completely sure if the standard is fair even if he could see properly...); and he has a disability. And all these factors are intertwined together to make it so hard for me to be the mum I should be. 

I used to feel so guilty about looking at Yon all the time, trying to see what he sees, what he does. How can he grow up when he is constantly under a microscope? When he is on a never ending test? After a while (and so many doctors appointments) I learned that I have to look, because when they ask you questions, when you need to advocate for your child, you are his only hope, you are the only one that really sees him. And if you don't look you won't be able to help him. With Yon it is so easy to pretend that he doesn't have a problem, to smooth over the rough edges, to tuck the abnormalities under the rug, and to chuck it all up to the quirky behaviour of a young and funny child. So easy and so tempting. After all, I don't understand vision problems, I don't understand what and how he sees, so it is easy to "forget" and pretend he sees every thing I see. Nobody understands what children with Ocular Albinism see. I see it all the time on Albinism Facebook groups I am a member of - people saying things like "I asked my son who has albinism if that and that disturbs him". No one knows. No one but Yon knows exactly what and how he sees. So I look at him all the time, I keep it in my mind all the time, or I will get annoyed when he sits practically on the TV, or that he stopped eating because someone moved the cheese box 2 cm to the left, or when we miss the tube because he still hadn't gotten down the stairs. 

But as I look, this nagging question creeps into my mind. If you keep looking, you can't be the parent he deserves. Because when you keep looking and keep pitying him, you are not helping him. You are making it worse. You are establishing him as "different". You are not letting him grow up, face the world, be "normal". How will he believe he can do anything and how will he believe that there is a difference between being disabled and having a disability when you keep on pitying him?

But what else can I do? 

Where does the line between helping and hindering goes? Where does levelling the playing field turns into creating an artificial advantage?

The kids were playing the Wii a few days ago. I love it when they play the Wii, because it took Yon so long to manage it, with the tiny (and very nervous) cursor that keeps moving on the TV. He doesn't like anything except touch screens he can hold an inch from his nose usually, so the fact that he managed to learn how to operate the Wii and moved from watching to participating makes me very happy, and so we "encourage" (meaning - force) Ron to play games that Yon can participate in. He usually doesn't care, and that's not the point of the story. The point is the competitiveness. Ron sees everything in the world as a competition, and he is using Yon's eyes to make sure he wins. And Yon, who does not like to lose, starts crying. And then the yelling starts. What should I have done? What I did was tell Ron that he is never allowed to use Yon's condition in order to win. That Yon is younger, smaller, more vulnerable than him. That I expect him to defend and help his brother. But what should I have done? Was that the right thing to do? It has been eating at me ever since. I am not sure. Because on the other hand, Yon doesn't like to lose and so has a tendency to cheat whenever the game they are playing at that moment doesn't go his way... Of course I tell him not to cheat, but somehow, it is not the same as putting the pressure of his brother's condition on an eight years old. Somehow I am not sure I was helping either of them.

In a different lifetime I translated an article that had a sentence I can't get out of my mind about the fact that our job as parents is to raise our kids so that they could leave us. And every little step we take along the way is exactly that - we want to raise kids that are secure enough, independent enough, happy enough, to want to leave, to be able to survive in the "real world". Be that world nursery, school or camp. I have done enough with Ron. But not with Yon.
He is not ready. I am not ready.
I have to do better, be a better mum, take him out from under the microscope, stop pitying him, stop being afraid to let him experience more of the "real world"

And that is how we get back to haircuts. Yon hates haircuts because he hates it when you touch his head. He likes his hat, but he doesn't like it when you pat his head, or touch it even casually. He used to be really bad about it, and every light touch would lead to a melt-down, but now if I pat him on the top part he is ok with it (though he doesn't like it), but if you touch the back of his head he freaks out. It makes haircuts difficult. Now, I like short hair on boys, but the truth is that if he could have done one of those longer hairstyles nicely I would have gone for that. But he doesn't have the hair for that, and it disturbs his glasses, and when he runs around his hair stick to his head and annoys him (and me). So he, like his brother (who has hair of steel. Don't get me started) have very short hairstyles. Which requires a haircut every month since the age of one. 

Yon is four. And every one of those haircuts was done at home, with a screaming child, a distraught Ron, frantic parents and miserable neighbours. It did not get much better. We got him to the point of not crying from the get go, but somewhere along the way he would start screaming, and only stop about five minutes after we've already finished and stored the machine away. We never dared taking him to a hairdresser because of that, but kept hoping that it will get better with time and experience. That we could shelter him (and us, and the hairdresser) from facing the outside world. But we couldn't do it anymore. The machine started making funny noises the last time we used it, and we thought that maybe scissors will be better than a machine, and so it stood - we have to take him to the hairdresser. 

This Saturday, after I explained it to him, again and again, and made sure he wasn't crying before we even left the house, we walked the five minutes from our home to the hairdresser. 

Ron was first. Hidai was second. Yon was last. 

I have to hand it to the hairdresser. She was kind, nice and very child friendly. You could also see she doesn't believe us when we told her he will cry through the whole thing. 

He didn't. He held the machine (which is far less noisy than the one we have at home, so that helped), and she gave him a comb to play with, and his robe had animals on it, and he didn't get any hairs on him during, which also helped.

He did cry when she did the back of his head, just like at home, but I have to hand it to her, she didn't even flinch, and we asked her to use scissors which made it better, but the problem is once the screaming starts it is almost impossible to stop it, and he calmed down completely when we were half way home. It wasn't perfect, it was so hard to compare him with how Ron sat there getting his haircut, but it was a step in the right direction. 

For Yon it was a step towards being able to get a haircut.  

For me it was a step towards relinquishing the control, towards setting him free to grow up.

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Happy (Jewish) new year

Ever had a holiday that baffled you? That you just couldn't decide how you feel about? Do you like it? Do you hate it? Do you want to celebrate it? Do you just want to ignore it? This is the problem I have with Rosh Hashanah, (Jewish New Year for all my non Jewish readers). Every year it is the same, except it is getting worse. September arrives and I feel lost, and am left with one nagging question - is there a way to justify celebrating Rosh Hashanah outside of Israel? What is left of one of the biggest Jewish & Israeli holidays when you leave Israel? When you reside in a non Jewish borough? When year after year you sit alone at the holiday table? And on the other hand, how can we not celebrate one of our biggest holidays? How can we abandon our traditions just because we live somewhere else? and if we do, what will be left of us, of our identity?
Well, I spent the whole day yesterday thinking about it, what do I do? This year my parents are coming over from Israel for a month long visit, and they will be here on Rosh Hashanah for the first time in years, so it is a bit different than previous years and we can celebrate the holiday as it is supposed to be, but on the other hand I feel so tired and stressed and to be honest I just don't have the energy to do the whole extravagant meal thing. My life is so hectic right now, so full of stress and uncertainties. I am tired of chasing things and places I no longer have. About a week ago one of my blogging friends wrote a post about something that required her to go back to somewhere she moved on from, and I told her my life philosophy is "never go back". So why am I trying to go back to celebrating holidays that somehow no longer feel like they belong to me?

Traditional Ron, 2008

I couldn't make up my mind what to do, and it even messed up with my baking. And nobody touches my baking. It is my safe heaven, my thing. So Hidai suggested I do a list, because everyone loves a list, to clear out my mind, and put it in writing - the on the one hand/on the other hand, the pros and cons, the yay and nay of Rosh Hashanah.
First of all, the calendar thing, I mean we live according to the Gregorian calendar, even in Israel, unless you are very religious you do, I won't be able to tell you the Jewish date of my birthday, of my wedding, of my kids' birthdays, of today (to be honest, it takes me about four months to accept the change of year anyway so remembering two calendars is just too much). But the holidays are all according to the Jewish calendar. And that is why they keep moving, and every ear we play our favourite game "find the holiday" where we all sit around the Google calendar and start searching for all the holidays. The winner gets a sticker - holiday ace. And that is why the New Year starts at September. Let's talk about that for a second - who in their right mind wants to celebrate the new year in September? At the beginning of autumn? When everything is grey, the weather is getting colder, the days are getting shorter, and the leaves are starting to fall down? What exactly are you trying to say here? May your new year be grey and miserable? On the other hand, you have to remember in Israel it is the summer that is the harshest season and not the winter. Autumn is also the time when you plant new crops and start the new cycle, it is the start of the new school year, it is a time of hope and excitement in the life of children and parents, and as such it makes absolute sense to celebrate the start of a new year in September. In Israel it is a big holiday, you get that holiday feel in the air, and it is contagious. Here it is on Wednesday. Just a regular Wednesday, the day before Ron starts school, my parents are arriving that night, Hidai is working. The only thing in the air around here is stress. And apparently a stomach-bug.
Then you have the traditions, because I can hear you all out there (or maybe it's the voices inside my head) with the judgemental - but don't you care that your kids don't know the traditions you grew up on? Their Jewish traditions? Don't you care that your kids won't know? Won't have the same memories? It is a complicated subject, that the short answer to is - no, I don't. If I wanted my kids to grow up like me I wouldn't have left. The longer answer to that same question is - yes, of course it makes me sad to see a photo of my beautiful nephew celebrating the Shabbat (Saturday) in nursery in a way my Yon never did. Of course it squeeze a bit at my heart to see all the photos on Facebook of kids dressed in white while mine are wearing blue jumpers. But then, I have no idea what traditions I am supposed to pass on in regards to Rosh Hashanah. Is it the calendar? Because if so, then I have it covered. I told Ron about the different months, and I think he remembers about three out of the twelve. Is it the atonement thing? Because if so I have issues with it myself. I have never done any of the required atonement things. I don't believe in a specific day for I'm sorries, for atonements. I find it too cheap, an easy escape. How can I teach my kids something I don't actually believe in? That I don't practice? Is it the religious habits? Because we are not religious people. We have never been overly religious, and are not planning on becoming more so. Where does that leave us? What big holiday traditions do we have? On the other hand, there is the real meaning of the holiday - the new beginnings, the reflection on last year, the happiness and pensiveness that goes hand in hand, the recognition that you have to learn from your past, that new beginnings are dependant on what you have done, on the road you travelled. And I do like that, I want my kids to know that. I like the music and that my boys know the holiday songs. And the food.

Last year's holiday baking

Which brings us to the last section - food. Jewish holidays are all about the food (and usually how someone tried to kill us. But since they didn't succeed, we can eat). Rosh Hashana is no different. First of all you have the Eve, where you have a big family dinner with enough food to feed a small country for about a month. Then you have the next day's gigantic lunch. Someone has to eat all the leftovers after all. And if you are completely unlucky and have his & hers families, you get another gigantic meal. I remember one year, I think it was 2004, when Hidai & I had four such meals in three days. We gained two kilos each by the end of the holiday. A festive meal is a must for a Jewish holiday, but the truth is I don't like cooking, the kids are very much against changing their evening routine, and when it is just the four of us, the question that always comes to mind is - why bother? After all, the real thing about Rosh Hashanah is the sweets.

Honey cupcakes, recipe on my Facebook page (Hebrew & English)

And this is where we come back to baking. You see, because we are starting a new year, and we want it to be happy and successful and sweet - the real traditional food is apple dipped in honey. Not one of my personal favourite I have to admit, but Ron is crazy about it. Because of the sweet motif Rosh Hashanah is a baker's heaven - you have sweet bread, you have honey cakes and cupcakes and cookies, you have apple cakes and trifles and crumbles. To my surprise, the kids actually adore honey cakes. Yesterday, in an attempt to get into the holiday spirit, I made some very easy and quick honey cupcakes. It is true that it said on the recipe that it is loved by kids, but I was still shocked when both Ron & Yon ate two each.
So there you have it. I guess I did raise my children to follow my lead, to keep my traditions, and to know what's important in life (and holidays) - always go for the cake.

Have a happy Jewish new year everyone!
(and don't forget to dip your apple in the honey...)

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