Wednesday, May 30, 2012

Slowing down

I have a funny feeling I have already written about this... last year... but I'm just too lazy to check... So, if you already read about it... you can skip it. Really. I won't mind.

So, last week - again - me and J. got the RDI assignment to slow down the way we live our lives. Ha-ha-ha.

We also did some brain storming with our consultant to find the possibilities where could we 'get' some extra time.

First possibility - one of us should stay home - NO WAY!!! We will not survive - financially. But it would be nice... :o)

Second possibility - to get a hired help which would take care for our home and drive children around to their activities and appointments... - NO WAY!!! We won't survive that either. Again, finance. 

Third possibility - J (and I) should cook in advance, not every day fresh new... - possible.

Fourth possibility - we should learn to ask for help or at least accept help when offered... hmmm... hard to do as we were not raised that way... but... we will give it a try...

Fifth possibility... I think we run out of them. Hmmmm... not much possibility to slow down. Is there?

Well, let us see, what awaits us next week:

- Monday; June 4th: 
we will take Patrik to Maribor for a gene blood test at 11 a.m.

- Tuesday; June 5th
Patrik has his weekly appointment with his LS

- Wednesday; June 6th
1.) Patrik has his first appointment with new psyhologist in Ljubljana at 9 a.m.
2.) J. and I have the last meeting with the kindergarten staff to do the final evaluation of IP at 3 p.m.
3.) at 6 p.m. we have our skype consultation with our RDI consultant Elisa - to tell her how me managed to slow down... :o(

- Thursday; June 7th
1.) Patrik has his appointment with his working therapist at 7:15 a.m.
2.) not confirmed yet - a meeting with the chairman of the new commitee to talk about Patrik's future schooling...

- Friday; June 8th...

Well, this is next week in short... What I have to write here is also:

J. will be at home whole week - thank God - so mostly he will drive Patrik around the appointments, but I will still have to go to work. O.K. not on Monday - but will try to do something from our home as I can;
On Tuesday I will go earlier to do the job before and then went out for two hours and go back to finish it;
On Wednesday I will go earlier again and go out for two hours and then leave earlier to get on that meeting at 3 p.m. on time;
On Thursday - well, everything depends on the confirmation of that meeting with the committee chairman - if it will be confirmed I just don't see myself going to work as I will not have enough time to get to the meeting as it will be on completely different side of our 'small' country...
And there is Friday... full working day... 

Why I will work (and live) like this - it's the beginning of the months and some things just must be done at the beginning of the month.

Well, we are trying... but we are not quite successful. 

We will really have to slow down to 'slowing down' - one step at the time. It looks like we cannot cut ourself at once... Slowing down is a process which we will just have to learn and accept...

Does anyone has a recipe how to do it?

Saturday, May 26, 2012

The cleanest shower in the world...

It was three years ago, when we tried to toilet train Patrik for the first time. I took two weeks off from my work, kept him home and took off his diper. He was a little over than three years old. At that age Loris was out of the diper for quite some months. So we decided to give it a try. 

Well, I think I don't need to tell you that those two weeks our house was the cleanest house in the world. I'm not kidding. 

Patrik loved being without his diper, but he had no feeling about when he needed to go to the toilet. I took him there for several times per day. Yes, he sat on the toilet, but nothing came out. Three to five minutes after returning fully dressed (it was winter that time) from the toilet he peed or even pooed. wet pants didn't bother him, but pooed ones did and you can imagine just what he did with that 'stuff'... 

We gave up trying after two weeks. We realised he was just not ready yet. It happend several months later when we noticed that he started to pee in the shower every time we put him in in the evenings. At first we were a little bit annoyed, but then we realised that this could be an opportunity we were waiting for. As his getting to bed time was and is still at the same time, we started to watch for the signs.

So, we prepared potty and when he stepped into the shower, J. let the water run and I waited for him. It was just a seconds later. I grab potty and put it infront of him. And got it. He was surprised and he watched where the water went.

This type of doing we did for couple of weeks. After that we thought he was ready and we gave him potty to pee before going into the shower. First two to three attempts were not quite successful, but at the end, he realised what we wanted from him.

Not long after that, we started to noticed during the day the signs that told us, when he wanted to pee. So, runing after potty was something we did all the time. And he was soon free of night diper - we didn't put it on him after 14 days of getting dry diper in the morning. After that, there were perhaps 5 times that he wet himself during the nigh.

But it was completely different story with the poop. As he was severely constipated for over three years - God those were three long years - we didn't want to push him, 'couse as soon as we did, his constipation came back. No medicine, natural or chemical didn't help - untill we were told a year and a half back about Movicol - and that helped him.

Nevertheless, when we managed the pee, he started to poop in the shower. It looked like hot water helped him release the intestine. Sure at first we were angry - especially me - couse even if he was not totaly cleaned, we had to take him out of the shower, cleaned it and put him back in.

At that time potty didn't work. He was refusing it. Totally. We didn't know what to do. At the end we let him do it as his constipation was so hard, that we didn't care anymore where he poops as long as he poops. 

Yes for almost 4 moths our bathrom and shower looked like fresh out of the store. As I can't clean with the rubber gloves on my hands I did it without them... and my hands looked at that time like I was 90 years old. No cream helped them mend...

After almost giving up that he will ever started to use potty for the poop, we got a real surprise. Well, J. did. I was not home that day. I was just told about the break through.

When they came home after work and kindergarten, suddenly Patrik run to the toilet and started trying to undress himself. J. went after him and helped him. He thought that Patrik want to pee as that was the thing he did every time they got home.

But that day he didn't just pee, he pooped too. And all days after that. 

Now is two years he is toilet trained. Completelly. Now he even don't show us that he need us in toilet. OK... we go and check what he did and help him wipe him. But all the other things he does by himself. Undresses, dresses, lowers the water, washes his hands, turns the light, closes the door.

Actually with all those things he is more consistend than Loris is. She must be constantly reminded... :o)

So, that his/our story about toilet training. If anything we learned out of it, was we cannot rush things. Patrik did them when he is ready. We just must be ready to see the signs...

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs. Please join the cause by joining the facebook page - Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday Read and follow the Special Saturday Blog -

Thursday, May 24, 2012

Cherish the Moments

Six months passed that we got 24 hours for ourselves... 

Just treasuring the moments with the photos...

View from the cafe terrace!

The church tower above the city of Piran - built in 12th century

My personal bodyguard :o)

Caught on camera without knowing...

The view I would like to have from my bedroom windows.

Wednesday, May 23, 2012

Concerto # 2

Video tells all... :o)

It looks like all those hours of quarrel will paid off... 

Tuesday, May 22, 2012

Special Saturday - Food and it's difficulties

I used to love to cook. Although among four sisters I was never recognized as the one who can cook, I liked it. I liked to prepare huge Christmas parties. As we were/are a big family I had a lot of food to prepare and I loved to experiment in the kitchen.

But as all the things change, so did my love to cook. That happened shortly after we learned about Patrik's allergy on cows' milk and it died completely when we tried also GF diet with him a year and a half later.

That was the time when my husband stepped in or should I say, behind the stove. Luckily and successfully.

We all like to eat. Who doesn't? And again... here is another but...

When Loris started her last year in kindergarten she began to eat less and less things. Luckily she ate healthy food although we are no " healthy freaks". In the past she never wanted even try pizza or McD's or similar food. Never wanted to try the bubble drinks. Those she still doesn't want to drink, but let say - last year she accepted french fries and chicken nuggets - she still doesn't want to try burgers... any...

As for the Patrik - he eats. Quite a lot. For his rare choices of food I blame - mostly - myself. When he was diagnosed with cows' milk allergy, we got very strict diet: no fruits, no vegetables, no milk and any products which was made of milk or contained milk. So at the end he ate nothing else than rice and roasted chicken. 

I almost went crazy. That was also the time when I realized I just have to trust my common sense more. If he had cows' milk allergy, why the hell he cannot eat fruits and vegetables? So we started to introduce him those flavors, but it was too late.

We struggled for over two years to convince him to eat apple. We had hard time - still do - to get into him vegetables. The only way we we found was sauces.

But last year or two we learned one more valuable lesson. Patrik taught us and I think we won't forget it.
He eats on his terms not on ours.
If there is something new or different made on the table, he will not eat that when offered, but when he will choose to. Sometimes that means he goes to the kitchen and helps himself.

So at this point we don't care anymore if he doesn't eat when and what we do. He will not stay hungry. He knows better...

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.
Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Read and follow the Special Saturday Blog -

Wednesday, May 16, 2012

When S...T happen

I was (am) always proud of my natural night vision. I'm not kidding. I never had any problems moving around the house in the dark. Staircases, corners, furniture... no problem at all. 

I need very little light to see what is around me. Even solid dark never (in any house/appartment I lived) gave me any trouble. It look like I was perfectly built for a burglar, but never tried that profession. :o)

Patrik is like that too. He sees in the dark.

But it happened. To me too. I bounced and so hard... Well, let me tell you a little more details what happened.

Yesterday I took Patrik to Ljubljana to see his LT. When we drove back home, he fell asleep in the car. So he slept for about an hour until we came home. I knew that meant he will not go to sleep at his regular hour (at 8:30 p.m.) but I was hoping that he will fall asleep at least an hour later.

Yeah! Right! No way! I was not that lucky.

Loris was in her room at 8 p.m.. Janez was in our bed at 9 p.m.. Patrik showed his first wish to go to his room at 10 p.m., but... he was driving me crazy as he came out for about 5 or 6 times with big smile on his face. In the meantime I checked Loris and she was sound asleep and looked like she fell out of the plane. One arm on the floor, the other twisten in some strange way, her legs up on the wall... So, when I checked Loris, Patrik returned to the living room. I followed him. He was cuddling his teddy or 'reading' one of my books... I was reading another one.

At 11 p.m. we did the same... He went to his room just to play me a fool. Of course he returned to the family room, still full of energy. It seems like he had fast recharge in the afternoon.

So, about half past midnight he went to his room and stayed there. But... yes, again... He was still 'talking' for about half an hour, so I stayed in the family room reading a book, until he went silent.
That was about half one a.m. 
So I read the chapter till the end and decided to go to sleep. As I have to get up at 4:45 a.m. to get ready for work at 7 a.m. I knew I will not have much time to get my rest.

I got up, turned off the lights, turned off the TV, turned around and....  bounced so hard... I heard the bang loud and clear. I couldn't found out what went wrong. You can imagine that in that instant I saw complete universe from its begining with BIG BANG forward and its expansion to infinity. I touched my nose 'couse it hurt and after that my forehead and felt an edge on it. 

First thought I had was - what will my colleagues at work think in the morning. I will tell the truth but will anybody believe me? Well, I didn't turn the light on. I actually saw the room again without it. My 'night vision' was on again.  I went to the bathroom and checked in the mirror what I did to myself.

The nose was OK, but on my forehead there was about an inch cut seen. I looked at it incredulously. I just culdn't believe it. In that instant blood started to run down my eye. Great!!! 

I started to look for the patch in the cabinet and managed to find it. Even more unbeliveable, that I did. I patched myself and went to sleep. 

In the morning I changed the patch and saw that the blood stopped running but only untill I washed it. So, I put another patch on my forehead and went to work.

About an hour after my arrival my colleagues came to work. Of course I was given doubtfoull looks at first, but - hell - they know me. I wouldn't let anyone to mistreat me. 

The most common question I got was - if I went to see the ER and if I got stiches. Yes, hell I did. I haven't even awaken Janez to tell him, what I've done to myself. I wrote him that in the morning - by skype - when he came to his work...

So, I believe I will have my scar... Again. I got one 30 years or so ago in the middle of the day when I feel on the ground with at least 6 grownups around me.
Finally that one fadded away... But it seems I just can't go around without them. Well, even better if they are seen, than noone asks about the unvisible ones... 

Sunday, May 13, 2012

Special Saturday - Friends

During my life I had many different friends. Friends come and go - this is the lesson I learned durring it. 

Some friends were 'with' me for more time than the other- but that's OK. People come in and go out of our lives when they are needed. One way or the other.

Of course it hurted in the past, when friends were gone. But I learned one more lesson. Those were not true and close friends. After a while I found out those were only passing through "friends" and I cannot be sad because they left. I have to be happy that they were with me for that long.

I have three close friends - who don't live so close. The closest one lives 30 kilometers away. Second closest lives 75 kilometers away and the last one - the one I know the longest - lives on the other side of the country.

I know those ladies for - well, two of them I know for more than 25 years and the 'last' one I know for around 15 years... At least I think so... :o)

They know each other, but they are not real friends. My friendship with those three ladies is somewhat peculiar. We take time off from our 'friendship' but not really - it only looks like it. We cannot hear, see or e-mail to eachother for several weeks, sometimes even months and in the past - some years passed, but...

... the minute we are together we are going on with our friendship as we never were apart. Funny, but thats the way we are.

I know and so does my husband, that one of my friends has always prepared a 'room' for me if anything might go wrong with my marriage. So I know I have a place to go. And that is nice to know.

But I have one more friend. I know him a little bit longer than a decade. It will be 5 years since we are married and yes, you're guessing right. It's my husband. We share almost everything... Why 'almost'? Well, as I don't share everything with other friends, some things are just mine.

He was the one who encouraged me to start publishing again. He was the one who stayed with me with our children, when we learned about our child's diability (although we were not married at that time). He's the one to whom I can give my love and share my joys, my failures, my fears... although I still cannot show him my tears - damn, I don't remember the last time I cried.

Nevertheless, I take him as my lover, my husband and maybe most important as my best friend

I think myself as a lucky one.

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.
Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Read and follow the Special Saturday Blog -

Friday, May 04, 2012

Angels among us

I thought a lot about this. About what to write today. Should I share another story - another incident, which happened to Patrik, to us. Should I share different story - a story about Loris. Should I write about frustrations I meet every single day...

Then it hit me; I should nevertheless write something nice that happened to us, although I was told not to tell. Just because of that I will not mention any names. I will preserve their anonimity, as they wished.

As I already wrote - I'm not particulary religious person. But I believe... in angels.

There are many forms of them - and as someone one time said - they don't  always have wings to prove to be genuine.

Patrik and our family have some we know about and I'm sure many others we don't know yet.

Today I will mention some. No names... I promised.

So here we go:

* Helpfull Angel - she's the one who helps us with her ever motivated whish to do something good. We really don't know what we will do without her.

* Knowledge Angel - although far away - the knowledge and instructions from her helped us realise that our boy manages to do much more things on his own that we thought he can and much, much more as we have been and are told from the "experts".

* Love & Caring Angels - yes plural. This is the largest group and is a group that loves Patrik just the way he is.

* Little Angel - although sometimes called "A devil in disguise" she's the one who says out loud the things we don't dare and by that she's the one who keep us going on trying.

* Diligent Angels - plural - yet they are two of them; twins, couple. Although they didn't need to and they don't need to, think of us. They think of Patrik. And they did a thing so unexpected, yet so helpfull...

* ...

So, these are some of our Angels. In a random order - not by degree - how can you give a degree to an angel?

I most defenitely forget some of them, but nevertheless, they are in our hearts.
I'm grateful for the single THOUGHT they have about Patrik and the troubles we are going through.

The angels are among us. You just have to be prepared to see them.