Last week I was filing a report. It was - as so many times before - a report about V and his disabilities. We are applying for some extra help. Assistance, you know.
V is quite a handfull. Sometimes it feels like I´m hurrying home from work just to start my next work. Get the kids from Daycare and School. Start cooking. Help V with his iPad (he loves watching Youtube-movies about trains, elevators and Teletubbies but Youtube laggs and buffers a lot and he simply hates that) finish cooking dinner. Feeding my kids, play som games with V, read some books, make the kids ready for bed and then read books before they go to sleep.
Some evenings my wife gets home early, and some evenings I work late. And I know, you are many out there, doing the same insane rituals. But believe me when I say that with a kid with a brain disability - it is a whole different ball game.
So we want help. Someone who can take V for some hours on a sunday. To go play outside, to the park, or just a ride with the bus (he really loves that).
It would be nice for me and my wife, we could relax, breath, recover a bit. But it would also benefit A a lot. We could care for him more, play with him without being interrupted every third minute by a scream or so. If you read my ramblings about the insane ritual above, you notice that I haven´t even mentioned A. That´s because he pretty much take care of himself. He is forced to do that.
So when I was filling in the application form the other night, making sure to put everything that V needs extra help with on paper, it all struck me as very sad.
"V has no friends of his own"
"V needs help and being looked after all the time"
"V har motoric difficulities"
"Although being 4,5 years old, V does not speak more words than dad and mom".
I cried.
Sometimes everything just hit you. And overwhelmes you. And you feel very very small. And that someone has treated you in a extremely unfair way.
But then I dried my tears. Tried to think about about all the good stuff V brought in our life.
And filled in the rest of the God damned application.
When I first stumbled onto your blog, I was intrigued by your extensive and growing Cars collection. I was just starting out and also watched the movie with my 2-year old son. Then I read more about V's condition and how you have coped with it in subsequent posts. It is amazing to know that collecting and writing about your Cars collection can allow you to 'escape', but also provide a place for you to voice your frustrations with things you can't quite comprehend with V. I speculate you are learning so much more about V's condition and are doing as much as you can to balance life and to be there as a supportive father and husband- and I commend you for that. I encourage you to keep writing and to update your blog. Even if it has nothing to do with Cars, it will help you put words to your feelings. Best of luck as you start 2014. I pray that your sons will one day appreciate all the work you and your wife do for them!
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