March 13, 2015

East side gallery - sunny adventure

We had 16 degrees last Sunday. Sixteen. And sunny. Staying at home felt like a crime or at the very least a waste of the finest day we've had since we've arrived here. You can never have a good enough excuse to staying home on a sunny day - we've already learnt that in London, and it seemed the same is true for Berlin. It seemed like the whole city was out, enjoying a rare day of real spring.
We decided to head over to the East Side Gallery to cover the last bit of the wall we have yet to see. The East Side Gallery, just in case you are exactly like me and have no idea what it is, is a 1.3 km of the Berlin wall which is covered in Graffiti and paintings and is one of Berlin most famous symbols and the world's longest open art gallery. It represent peace and reunion. It is also a very good place to let the kids loose.

The problem with taking the kids out to see some artsy type of things is that they really don't like it. They get bored, the get whiney, they start touching things and the question "can we go now?" starts showing up every 30 seconds. Not ideal for walking around a museum. It's not that I don't believe in forcing the kids to do things they don't like to, it's just that it ruins all the fun when you have to run after Yon and make sure he doesn't break a 300 years old sculpture (true story). Add to that the staying-at-home stir crazy, and you get two kids who desperately need a place to run, and two parents who desperately need them to run somewhere else.

The East Side Gallery seemed like the perfect place to achieve it all - let the kids run around, not have to shout at them about touching forbidden things, and see some art and history at the same time. And it only took us three hours and four change of clothes to get to leave the house. Who knew it will be so hard to get everyone into their spring collection?
Kids in spring collection
Half an hour, 2 trains and one pair of lost sunglasses later, we have managed to get to the East side gallery, which apparently has two sides - the one everyone takes photos of, and the one we went to. But our side had a park, and the view of the Spree, and most importantly - no cars.
And in the photos you can hardly even see all the broken bottles and leftover food bits that were spread around the park. I have no idea why, but after a certain age where young people see "cool" and "trendy" and "up and coming" all you can see is - really really dirty. Gosh, I am old.

To be honest I am not a big fan of graffiti as an art form. I have always been more of a museum kind of girl, but the East side Gallery is quite impressive. The amount of time and effort that went into creating each of those paintings is amazing, and as for the message of peace an unity - how can I resist?
Yon touching the blue. He only touched the blue for some reason.
Ron said he relates to this one, as he still misses Daisy from London :)
Kids and wall
Had to put this one in, because....Well, I look so skinny!
It is a wonderful place to visit, and I can understand why it is a must in each and every one of Berlin tour guides. It is just that it is such a shame that people take advantage of the fact that it is graffiti and outside and there is no scurity and think it is ok to draw and write on top of other people's work.

Of course we toured the more famous side as well, where the graffiti was much more political and opinionated than on the other side. And also in much worse shape.

The kids had a lovely time, Yon enjoyed walking around touching the walls and reading everything, Ron tried to see all the languages he could recognise, and I enjoyed the spring and sun. We've been there for about an hour and a half before the sun became too much for Yon (it has been the first time in a very long while that we had a proper sunny day), so we haven't seen all of it, but decided it's better to stop before the whining becomes too much and retreated to the Ostbanhof McDonalds for some spring menu (well, spring drinks. The menu at McDonalds rarely changes). We finished it all with some mandatory Boston Creams (you can't really walk past a doughnuts shop and not go in, can you?).
McDonalds is so ready for summer.
As we got home, and I was fishing for reassurance from the kids that they had a good time and are not extremely upset about being forced out of the house and away from their precious iPads, Yon did stop and announce that it was our "Berlin sunny adventure" and only then rushed to his iPad.
So all in all - a success.

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March 5, 2015

Rare Disease Day

Last Saturday was Rare Disease Day 2015, which I guess most people don't know about unless, like me, they have a child that fits the category and a Facebook feed full of people whose children fit the category. Sometimes I miss the days before we knew about Rare Disease Day, World Sight Day, Autism Awareness Month, Jeans for Genes Day, and so many other days... It used to be that Ron came back from school with a note saying we are having a red/blue/green t-shirt day for this or that cause. Please donate a pound. And all we cared about was how are we supposed to find a green t-shirt in the next 24 hours. Ron is a redhead - he doesn't look good in green.
Nowadays, I get emails and messages and requests to write about each and every one of these days, nowadays I don't understand why they didn't collect money in our school here for Rare Disease Day (or any day for that matter), nowadays I don't know how it is possible to not know about these days and their meaning for other people.
Nowadays I measure everyone and everything with relation to how they treat people, and mainly children with special needs.
And yet, today is Thursday and I am just now managing to finish writing about Rare Disease Day, because I can't seem to be ok with Albinism being part of Rare Disease Day. I have a really hard time with calling albinism a disease, because if albinism is a disease, that means Yon is sick. And Yon is not sick. On the other hand, every time I tell someone new about Yon's ocular albinism they take two steps backwards, like somehow it's or he or me are contagious. Like the fact that Yon's brain doesn't produce melanin can magically transport itself to the other person's brain and he will suddenly start growing blonde-white hair.
It took me all day (ok, I also got into a fight with my computer and couldn't fit the photo in the frame, which I knew I know how to do, and which eventually took me over an hour to fix) but I did join in the campaign, because at the end of the day I can't sit on the sidelines and not join something I support with all my heart just because I have a hard time with the labelling.
And I do, I have a hard time with labelling albinism as a disease, a condition or a disability. It doesn't make it any less true. I have a hard time getting the image of a sick child, or the meaning of a "diseased" child out of my head. But this is the point of Rare Disease Day - to make us understand that what we think of as a disease is not the only correct image.
For me Rare Disease Day is about two things -
It is about reminding us of the fact that medicine, like everything else, is a business. The Rare Diseases out there, or the "Orphan diseases" are the ones that gets dumped to the end of the line - there aren't enough patients to merit spending time and money and resources looking for a cure. But those "not enough patients" are people - dads, mums, children. It is so easy to look at numbers and statistics and say hey it's just 1:200,000 people... It is a very cold comfort for the people who has the condition, to their families, to the people who have to say once and again - no, there will be no cure for that, no one is even looking. Trust me, I say it often enough.
And most importantly - and the reason why I write about Yon so much in this blog, the reason why we tell people about albinism, the reason why I join in every campaign is that people are afraid and hateful and uncaring for what they don't know. Just today I read in Blind Children UK that new research shows that almost half the parents they asked would not invite a child with sight impairment or blindness to a party or a play-date. How many of these people ever saw a child with sight impairment? How many people do you know who has albinism? We have doctors treating Yon who never saw a person with albinism. All everyone knows is the mental image we have from the movies, from the books (like The De Vinci Code or The Heat), where to call what they depict incorrect will be an insult to the word. We are afraid of what we don't know, and the mental image we create of that thing. For the same reason watching the movie after reading the book is always a let-down (and not just because usually the plot in the movie sucks) - the onscreen image is always different than the one we created in our mind. The same is true for the real-life image. This is why we need days like Rare Disease Day, this is why we need inclusion, this is why we need to know.
I have a lot of people on my Facebook and in life who will not "like" or like this post or any post I write about Yon, who don't care, or don't understand or think I am putting him "out there" too much and flaunting his differences instead of being quietly relieved that he "doesn't look different", that I can hide his albinism, or the Asperger. It is easier to "like" a cute cat video, it is easier to share a photo of a cake, than it is to understand how hard it is for kids like Yon to fit in, and how the fact that he does is a miracle. How we can talk for hours about the fact that he decided to learn how to go down the stairs. How amazing it is every time he recognises us from afar, and how when I changed my coat the other day and he didn't recognise me it broke my heart.
It is so much easier to send our kids to a school where everyone "is like us", where they (and mostly we) won't have to encounter anything that makes us feel uncomfortable, anything that will force us to explain to our children about differences and specialness and other ways of life.
It would be so much easier for me to hide Yon's differences, to have him labeled a lot of other things, but not disabled, or blind, or Autistic. But I won't.
Because our children, my child, are not diseased. They shouldn't be hidden and banished to a dark corner or swept under the rug. They shouldn't be a dirty little secret to be hidden from the world. They should be celebrated and congratulated and embraced.
Because it is our children - the sick, the different, the Special - who makes society into humanity.

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