Nasty disease

2 September 2011

I'm lying watery, weak and w atching sad, romantic episodes "Ugly Girl". This is the life!

 And I don't want to write.

 P. S. New book to the queue passed to me from Miss that don't know in general :) "E-Mail from God".

Is Asia busy?!

The last time, my day was full. I keep writing. I am writing a blog, write a book, I write with him, with him, and even with her, and calls on GG are also inseparable. When I’m not writing, I read. Books waiting in line, I don’t keep up. Already I read "Blond and Blonde" - my priority, the next will be  "Cottage", then the Nouwen’s books, and in the distant future, I intend to read the entire series of "Anne of Green Gables".  At least I have seven volumes of Harry Potter behind me.
And English, English, English ... Soon may be useful to me.

And constantly I have new ideas and plans in my head. One of them – I’ll write briefly,  not to bring bad luck - is meeting with somebody I know virtually, only  there is a small problem, because she lives quite far away, in Silesia. If it turns out, it will be a very interesting experience and new knowledge. May be it!

For now, I have  cold. Sore throat, I'm cold, I have no strength, and in general I’m very tired. : (

But writing encourages me to sit, since so far I have no more encouragement :)

--- LATE-BREAKING NEWS:
After several minutes of eating my hand gets tired and falls, or I leave it alone, for a moment to rest. I called my dad, came Young and asks:
- Aunt what you want from granddaddy?
- To lift my arm.
- OK.
He grabbed, lifted and I could continue to eat . Granddad was no longer needed :)

I was so impressed of him, that I enthusiastically said, "Thank you!" and after my response Duck knew that he did something  amazing :)

Nice turnaround

This time it was very nice. My dad’s family from Koszalin visited us. They are great. My uncle impressed me, my aunt was always very open, helpful, talkative, but uncle seemed to be tough, cold, unpleasant. But I haven’t really talked with him so far. We meet very rarely.
This time he surprised me with his caregiving. I also liked about him that he was very factual, not just sweet-talk.
His jokes was, as I like - harsh, he was talkative, we was laughing all the time.:)
Despite of that we see each other once in few years.
I’m very glad that they come.

But I’m terribly tired, and my eyes are closing themselves.:)

Of course you are all gladly welcome, but maybe in two weeks…? ;D

Family, sweet family.

Our weekend ended in Wednesday. Since Friday we had lots of guests. It was great with our friends, but with family, mostly close, not so much.

When I was alone with them it was awfully quiet. I was shocked, when my “UNCLE” asked if I was better (I welcomed him with, short “ hi uncle”, last time he was in our place I couldn’t speak at all.) I told him, that I at least can speak. That ended the conversation. 

I don’t even know how to pronounce them. “Uncle, and Aunt” doesn’t seem right. I feel strange when I have to talk to them in this matter. So mostly I speak to them impersonally. It’s easy, if you have nobody to speak to…

In last five days, we had Kate from Kalisz, as our guest. It was the second time we met, but I feel I have a new friend. This time we had more time to spent, and talk to each other. We were reading a book written by girl who also suffers from SMA. (I’ll probably write more about her in the future). While reading, we had long breaks, due to subjects it brought for our conversation.
It was great opportunity for me to tell Kate more about me, otherwise I wouldn’t be so effusive.
She got knew me more.
It was very interesting.

It’s another proof, of “stranger’ being closer, than “relatives”.

 This world is strange.

Nephew

Lukas and Camilla went to Holland this morning. They’ll be there for about 1,5 month. Daniel is staying with us.
I thought he will be crying, and giving us hard time, but he was well prepared for separation with parents. He was saying them goodbye, without tears. He was very brave.
To be honest, he embarrassed me with his reaction…
I could be learning from him…

My brother is away, for long period of time. I won’t be hearing “Hi babe”, “what’s up fatty”
I have nobody to argue with, nobody to make laugh of…

At least we have Skype.

But Daniel compensates me my separation with brother. I’ve heard “I love you Aunty” few times.
Also I have things to laugh about. Now I can say “It’s great to be a kid”…

My old man is right.

Visit

In spite of  it was short, it was very productively :).

It’s very cool to talk, just be with intelligent man of great worth…

Every sentence, even those which seemed irrelevant, were very meaningfull.

Please I’d like more visits like that :).

Once again

I Just had my tracheotomy tube changed, second time in 2 weeks. (normally tube should be changed every three months) it was because of my problems with the foniatric one (which should be better for speaking and in every other matter, than normal one). I had problems with speaking, my throat hurt and I was bleeding to my lungs.

I didn’t want to seat, every move was giving me pain.

Despite that I was terrified of another change I knew that I have to do this to end my problems.

There was some blood getting to my mouth, but now it’s all ok. ;)

I got used to the respirator, venting tube, difference in speaking, even to sucking off. Even to changes in my life style.

The only thing than I didn’t got used to tube changes. It’s always giving me hard time.

But I know that someday even that will be “normal” for me.

People can get used to everything.

 
Well maybe to almost everything.