Thursday, May 23, 2013

Anonymous - together we search

So I've been a stranger. On my own blog.
Those of you who follows the events here know that I do this for two main reasons:
1 it's fun to collect cars
2 it helps me dealing with me being a dad to a four year old with a brain disease

But lately none of these two parts of my life hasn't been of much interest.

No cool cars has been released - please - does ANYONE know when the Team Chiefs from Cars 2 will be out as singles?
And even though stuff always happens around V, I've been pretty calm and easy going about the whole disability thing.

Until we went on a meet-other-parents-just-like-you-kind-a-weekend.




V has a very rare disease. He doesn't have a diagnosis. We don't know much about how he will evolve, just that it will be slow and this is because he lacks myelin (Hypomyelination).
So when we heard about Anonymous we were excited. (First we thought of the hacker organisation, but it turned out that Anonymous here in Sweden is an organisation as far from hacking computers as you probably could get).

Anonymous is for parents who have children without a proper diagnosis. Searchers. With children suffering from a wide difference of disabilities. But most of us with similar experiences.

Once a year this organisation offers a weekend at a remote hotel with lectures andtime to get to meet other people with similar problems, fears and thoughts.

So we got my dad´s for babysitting during the whole weekend and left for a two hour drive to the hotel. I have to admit that I was a bit worried when I saw the schedule - only two lectures were planned for the stay (that lasted from friday evening until sunday efternoon). The rest of the time was reserved for "family presentations".

But my mood lightened when we arrived and checked into the hotel. Newly refurbished and, thank´s to the swedish county council tax (that funds our hospitals), we only paid like 80 USD for the stay, and that included dinner at friday, three meals on saturday (including a four dishes dinner) and two meals on sunday.

And as for the family presentations - they were the best. So nice, soothing, comforting, sad and at the same time encouraging to hear other human beings telling things straight from their hearts. And you could tell that in this group of people everybody instantly knew what you were talking about.
People had the same experiences. The same worries. And helped each other overcome the same kind of troubles with insurance companies or social services.

At the same time - the stories were kind of hard to listen to. A lot of sorrows and bad news. So even though we´ve spent 48 ours of no cooking whatsoever and perfect beds, no disturbance during the nights and in a very calm enviroment - both me and my wife returned to the kids (and my dad who looked surprisingly alert and fresh) totally exhausted, emotionally.

But it was so worth it. And four of the other familys live close by so we will visit them, probably this summer.

Sharing, people. This is what life - and cars collecting - is all about.








1 comment:

  1. Good to see you back posting. I was getting worried for a bit when you weren't on here for a while.

    ReplyDelete