The year is coming to an end. It was a good year for Leo;
No hospital stays or unwanted surprises.
Just a stream of fortunes: big and small.
Some of which are worth mentioning as they are milestones.
First of all Leo went to preschool and settled in at a new place.
Secondly, being a novice traveller, he conquered new territories
- he travelled out of Poland and flew twice,
once more proving that nothing is impossible.
Finally, this being the last month's achievement,
Leo overcame his speaking barriers.
His world is no longer filled with silence.
He keeps talking -in a bit clumsy and blurred manner, but otherwise perfect way.

Thanks to all those who have supported Leo and his family this year.
Special thanks to his doctors, therapists, nurses and caretakers!
Thanks to those who organised great events for the benefit of Leo
and those who participated in them (auctions, marathons, concerts and gatherings)
and bringing us closer to Leo’s operation.
Thanks to those who made our blog popular thus spreading awareness of CCHS.
It did help some people get a proper diagnosis.
Thanks to those who supported us with their 1% tax donation.
Thanks to those who helpled us defeat the giant and enabled Leo to travel on a plane.
Thanks to those who offered their time and support in every other way.
Thanks to all of our readers who support Leo.

Dear Leoblog readers!
Leo is roaring his Happy New Year to you - lion-style.

No, no, no and no! Despair.
He won't go for any walk.
He wants to play not to walk!
He is adamant.
And no, he won't go in ten minutes
because he does not want to play just for ten minutes,
he wants to play LONG.
And he won't play after the walk because he wants to play NOW.
Not after the walk. He is in tears, sobbing and despairing.
He won't put those winter shoes on. Only the summer ones.
It does not matter that it is winter.
He is not going anywhere, anyway.
Even Leoparents, who know all of his tricks are in doubt now.
Maybe they shouldn't force him if it displeases him so much?
Maybe it doesn't make sense?
He howls incessantly while putting his winter jacket, his hat and his scarf on.
Then he walks out and, as if by magic, stops crying.
There is a broad smile upon his face.
We walks willingly, in a perfect mood, contemplating the nature.
The walk comes to an end.
Oh no! Not back home! He wants to walk! He wants to carry on walking!
There is no way he is going home.
No, he won't play, he is not interested in playing at home anymore.
No, no, no, no and no!


Dear Leoblg readers!
We wish you a peacefu,l quiet and good Christmas.
May your all dreams be fulfilled,
with everything in the right place
Safe from sudden turns of fortune.




The truth is that he was not in a hurry.
For 36 hours he could not make his mind up
if he wanted to be born or not,
thus giving his parents a clue that it won't be easy.

Dear Leoblog readers!!!
Hereby we remind that on the 16th of December 2014 at five sharp,
mister Leo has started his fifth year of life.
From now on he is a proper four-year-old.

We wish you joy and good health,
many travels and lots of great cars around!


P.S. The anniversary celebrations, as usual, were festive.
Leo was euphoric when the guests cheered at his courageous candle-blowing.
They had to be re-lit three times. And every time he received a standing ovation.
Be was beyond himself with joy.

Back to the subject of sleep and cars…
As aforementioned, every night Leo is accompanied by a car.
He holds it tight, trying hard to be in control all the time.
Sometimes things get out of hand (virtually) and Leo wakes up frightened

- Mom, mom, my car is gone -
he screams in the middle of the night.
One of his parents has to get up and find the missing toy.
Behind the bed, under the pillow, in the folds of his duvet.
No cheating is allowed. Leo always remembers which car he slept with.
His tiny fingers will always tell a red Porsche from a blue BMW.

IMG_1498 (2)

P.S. On Tuesday 9 December "Our Curse" received
the Best Short Documentary award at Bogoshorts Festival in Columbia.
For those interested - an interview with Leo's parents in Looped magazine.

Going to sleep is problematic.
And it is not about the ventilator or the pulse oximeter
(the only permanent elements of the process) but the „goings on” after Leo has been connected.
Sometimes Leomom has to read.
A selected book.
No, not this one, the other one (Help! Where is it?)
Sometimes Leomom has to tell stories.
Sometimes she has to read first then to tell stories.
Sometimes is has to be dad, not mom.
Sometimes Leomom has to lie down next to Leo after reading.
Sometimes she has to stroke him, sometimes - she is no allowed to touch at all.
Sometimes she has to leave.
Sometimes music has to be on. Or off.
Sometimes the shades have to be up. Or down.
Sometimes the bedside lamp has to be left on.
Sometimes the door has to be shut. Or open.
Sometimes Leo needs a glass of oat milk, sometimes a glass of water.
Sometimes he falls asleep accompanied by a toy BMW,
sometimes by a toy bus or a motorcycle.
Sometimes he wants a pillow, sometimes he doesn't.
Sometimes he wants to sleep front to front, sometimes back to front.
And so on.
Leo has to decide for himself.
And he knows what he wants.
Because it can't be any other way.
He just won't fall asleep otherwise.


*A car is a must. Leo has betrayed the Dog to sleep with cars.
He falls asleep only in this cold steel company.
But he is very fair, he always picks up a different model.
None is favored.

Ladies and Gentlemen,
To spite the greyness of the world Leo has painted a fauvistic portrait.


Leomom's portrait, Leo, tempera painting on canvas, 15 x 15 cm
The moment Leo seemed to have finished
and his mom wanted to take the painting from him, Leo protested.

- Not yet? Is anything missing? -
asked Leo's mom.
Leo indicated the tracheostomy on his neck
and then he carefully painted a tracheostomic scarf on mom's neck.

- Would you like mom to have one?
- Yes.

Well, noone is ideal.
It is in art that "dreams become reality".
Let's hope that this dream remains only in the domain of art.

From dawn to dusk everything is grey outside.
The city, the sky, trees and the yellow house outside of the window.
Thoughts, dreams and moods are grey, too.
The contrast between colors are nonexistent.
There is no white.
Everything is engulfed in monotonous, helpless sea of grey, which is,
photographically speaking, it is never lighter than 50% on Adams's scale.

As if grey wasn't enough, it is dark and cold.
The best way to face it is to stay in bed.
To save bodily energy.
Just sleep, read and eat. Not necessarily healthy food.
Or better still - it’s good to make an escape into the tropics.

That's the way it should be, but it is not.
We have to generate a lot of our own energy.
Because someone has to take Leo to the doctor for a heart-check,
dental check, urological test, and for an orthopedical test.
And for his visit to his neurologist. And his psychologist.
And to practice speech with Leo.

But how to manage all this when it's so grey outside?


Gerhard Richter, Arrest 1 (Festnahme 1). 1988. Oil on canvas, 92 x 126.5 cm

Leo went on a preschool trip to the theatre.
From her theatre office Leomom could hear outbursts of laughter and joy.
Curious, she went to see if her son is laughing with the rest of his class.
She sneaked in to discover that her son was having a good time. He sensed her presence.
Upon seeing her, he smiled back,
but his index finger did something completely contradictory.
With a firm gesture he indicated the door.

- No mom -
said Leo with a smiling face.

Nikolas Nixon, Bebe and Clementine, Cambridge, 1985

- Leo, bath time, let’s go. It’s time to sleep.
- No’ ye'
- Would you like to play?
- Yep
- Ok, five more minutes! Deal?
- No, ten.
- Ok, let’s make it seven!
- Two!

An example of spectacular success.
Both sides ended the negotiations with a sense of victory.

Leo_11102014 (5)_ok

P.S. No, Leo is not sleeping in the bath.