May 29, 2014

And the shoes keep dropping

Amongst the million of things that could, and did, go wrong over the last few months, everything relating to Yon was, like always, front and center. It is amazing how much un-static a static condition can be, I mean, every time I think that we can just close our eyes and rest a bit another shoe drops.
And for some reason the shoes are like dominos, when one drops you really can't stop the rest from toppling over.
It all started in April with the freakiest eye test result we've had for a long while. Whenever anyone asks me about eye problems with kids I always tell them my first two rules - always go to the doctors expecting the worse and kids eye tests are highly unreliable.
But ocular albinism, and this is a well known fact, is a static condition, so rule number two shouldn't apply, right? Wrong. The fact that it is static is the only good part about it - you can't lose whatever eyesight you have. Why is it good? Because after you spend three years fearing for your child's vision, after you spend three years of patching and looking and expecting every eye test to discover that he lost one eye, hearing that it won't happen is a good thing.
Discovering that his left eye has deteriorated over the past six months and he has lost another line on the eye-test, is not a good thing.
Hearing that oops we might have been wrong and he might lose the vision in that eye is not a good thing.
Going back to three months between visits to the hospital instead of six because we have to make sure his vision isn't still deteriorating is not a good thing.
Living with yet more guilt because we didn't notice he has difficulties with his left eye is not a good thing.
Then came the DLA situation. Living in the UK and reading the papers you might think getting benefits is oh so easy. Trying to claim a disability benefit for Yon made me feel that not only is it not "easy", it is darn near impossible because the hurdles and hoops you have to jump through are there just to make you give up. First they lost our papers. Lost it. The forms it took me weeks to fill, and were sent in the special envelope attached in the pack we received from them, were lost. The forms I agonised over, and cried over and filled my heart with despair over my child's future were lost. It is not such a big deal. It happens all the time. That is what the helpline advisor (or whatever the correct role description is) said, just fill it again.
Not a big deal. Sure. I guess the forms that asks for your child to be legally and publicly declared as disabled is just like the form for... I don't know... Enrolling your child in an after-school activity. After all, in both of them you write the child's name and your phone number.
Of course I had a copy of everything I sent, I have been in this "we lost all your documents" story before (though in another branch of the government) so it was just a matter of photocopying it all again and sending it to the right address (not such an easy thing when the address on the form and the address we got on the phone are not the same). It still took me 24 hours to manage it. But hey, not a big deal.
Then I got a letter saying I need to send in my passport and fill in lots of information I have already filled in the first form about where we are from. Send my passport. To the people who already lost my forms. Not bloody likely. So we went to a Job Centre to send "verified copies" which means the information guy at the entrance signed the copies I've made at home. Actually we had to go to two Job Centres because apparently that very difficult procedure of signing your name isn't done everywhere.
Then they lost my forms again.
Then, after I explained I am holding in my hand a verification from the post office that someone there signed for my letter, they apparently found my documents, but informed me that because I have not asked to get child benefits for Yon (which I didn't know I was supposed to do) I can't get the disability benefits for him.
Then they called again to ask me again the same questions I already answered twice.
It is more than four months since we sent in the claim form. The claim form that uses Yon's case (a five years old who is sight impaired) as an example of someone entitled to DLA. And we are still waiting. Now, after the third time in which I gave my NI number and assured everyone that I am indeed a tax paying self-employed citizen, it seems we are waiting "for a decision".
Then came the Islington council people and announced that though we have been waiting for six months for Yon's sight-impaired registration card, it seems that the problem is that... How did she put it on the phone? That they didn't do their job and our "case" is just sitting there on someone's desk waiting. For what? Probably for Yon to be old enough to be moved to the grown-ups team.
This phone call is the sixth one we've had with them since the hospital sent them the papers in December. And it comes after the obligatory "we lost your papers", the very entertaining "we don't do these kind of things", and the hilarious "we are now in the process of reviewing the process. It is going to take an undetermined number of months in which we will be unable to do anything with your claim".
And you know what the saddest part of it all really is? I didn't even want to register him. I hate the idea of registering Yon in some big book of "defected" people, as if he needs to be branded, as if he should have a permanent sign on his forehead. But I am doing it anyway, because when you go to the theatre and you need to prove he is really half blind, so you'll get the seat where he could actually see something, you need that plastic card.
Then there is the school, where everything is fine and we are just exaggerating, where there isn't an ability to get Yon large print books, where it is our fault we don't have a statement for him yet, where it is not really sure how we transition Yon to year one because "all kids have a hard time and he'll be fine".
And lastly we have the developmental and behavioural assessment (CDAT) we have been waiting for for 14 months. Because, who wants to guess? Yes. They, too, have lost our papers. We have now had the school visit (where our teacher told them that everything is fine and we are just exaggerating) and the home visit where Hidai & I spent an hour and a half answering questions about any and every aspect of living with Yon. They have added a formal speech assessment, which to my way of thinking reaffirms what I have been thinking and fearing and telling the school - Yon has a speech delay that can't be explained away by my being over hysterical or his being bilingual. Then we also have the clinical observation session and the "let us tell you what is wrong with your child" session.
The always go to the doctors expecting the worse rule dictates that I should prepare myself to hearing that Yon has an additional problem. Besides the vision, and the speech that is.
So what do you do when the shoes just keep dropping, you ask? what is the lesson here, you wonder? Now that is an easy question. The lesson is, never stand next to scissors. Because you might get annoyed with your hair and it being in your eyes all the time and think that the day the people from the CDAT are coming over is the best day to "just straighten it a little".
Trust me, it does not end well.
And no, there will be no photo of that.

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May 27, 2014

Thirty five

Last Tuesday I turned thirty five. It actually came as a bit of a surprise my birthday I have to admit. I mean, I knew it was coming, it is hard not to when you are sandwiched between two boys who count the days to their own, but I was so busy with the chaos that is our life right now to actually acknowledge that it really is my birthday. It is a weird time in our life right now, with lots of questions and waiting to get answers, and if there is one thing I am not good at (as in horribly horribly bad at) it is waiting. I am not good with sitting and waiting for time to pass, waiting for others to decide my fate, waiting for things to run their course. I get impatient, negative, annoying. And in the middle of all this, I was supposed to celebrate my "you are officially half way to 70" birthday. I know 35 isn't a significant number, but it is just that point were you are no longer "around 30" but "thirty something". Don't get me wrong, I am not looking to go backwards. I love getting older, I love being able to look around and see how young people are, well, stupid, and to have the ability to say that because I am old. I love everything I have achieved with age - I am now so much better at being me than I was when I was younger.
But sometimes I just wish I still had the one thing that young people have and I don't - ignorance. When you are young you have time, you have enough time for everything and the ability to believe that it will never run out. The older you get the more clearly you see the sand dripping down the hourglass.
The older you get the more every minute counts, every dream you wanted to achieve becomes a question of if and not when, the regrets starts looming bigger and bigger. This is my biggest fear, the fear of regrets. I don't have many, but the ones I do have are not things I will be able to change anymore, and I really don't want to add to the list.
So I've made a list. This was my gift to me this year - the list of things I would regret never doing, and the promise to make them all happen.
The first item on my list was to have more fun. These past few months have not been easy, actually they have been very depressing and everything that could go wrong did, and I have stopped living almost completely. I won't lie, things are not any better today, and I do feel guilty about having fun in the midst of all the problems and unknowns, but first of all there is less that can go wrong (after all, most has already happened) and as Hidai told me - we tried the no-fun way, it's not like it helps anything, so now it's time to take a deep breath and believe that it will all be for the best at the end. And have fun in the meantime.
And so, for my birthday week (it's because we do the celebration and gifts in the morning, so it has to be the weekend, and when your birthday is mid-week you get extra days) I got -
1. A gloriously sunny day and my first iced-coffee of the year (which I love even more than regular coffee, and which I only drank half of because it was too cold for me)
2. Lots of hugs and kisses (hey, I have two boys. One of which has announced that he is in training to become a teenager. I have to find special occasions and / or bribe them for kisses).
3. A day out in Oxford St. like Hidai and I used to do whenever we came to London as tourists. We went to all the shops I love, had coffee at our "usual" Pret, and bought my birthday gift - two pairs of earrings, which is my favourite kind of jewellery, and that I haven't bought since we've left Gibraltar.
4. Three days of stomach virus for Yon and myself. Ah, the fun never ends. But I did get to see all the TV I wanted and read three books because Hidai was in charge of everything.
5. A cake made by all my boys - Ron got over excited, Yon made a mess and Hidai suffered through, and they all made sure I will be there to supervise, but I got a heart-shaped-chocolate-cake that I did not make. I did try to suggest I might want a different cake this year, but that was too much for them to handle, so I just chose a different recipe for a chocolate cake and got the traditional one.
6. A card from each of them. I know it doesn't sound like much, but it is my favourite part, especially this year when Yon wrote one, and Ron went off-script and did not write the same thing as he does every year. And Hidai always writes the best cards and makes me cry every year.
7. A musical. That was the real gift I asked Hidai for. We haven't been to one in ages, and I really wanted to go out for a lovely evening with the whole dinner and a show thing. That was not in the cards unfortunately because... Well, I couldn't think of a good lie here, because we don't have a sitter. The kids don't do well with us going out at night, and so we just... Don't. So instead we decided to take the kids to see The Lion King, and do a Pret and Matinee thing. Since Yon went through a Lion King craze a few months ago (up until it was replaced by Frozen) we all know the 3 movies (yes, there are three Lion King movies) and songs by heart, and though I was a bit worried how he will do we all loved it.
8. Movie nights - we watched The Never Ending Story with the boys in an effort to educate them about the eighties and honestly just felt even older, Any Given Sunday (without the boys, though they didn't like it), because Hidai remembered a line from there and then we just had to watch it again (still a great movie, even if you don't like American Football), and The Internship which we somehow missed when it came out last year and is indeed a very funny movie.

This morning my Happy Birthday sign went down, and my week of celebration has officially ended. Life is still weird, confusing and needs a lot of waiting. But they are also full of love and fun and laughter. And in the end of the day, I have already accomplished my biggest wish of them all - I have my boys, who in each and every day makes me feel like a room without a roof.

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