- There is no the greatest number.
- ???????? Why not????
- Because numbers are infinite.
- Waaaaa!... Why are they infinite?? I don't want them to be infinite...
Despair, wailing and tears.
Infinity does not fit in Leoimagination...
Duane Michals, Things Are Queer
Leo is reading a book in his room.
He is connected to pulseoximeter and he breathes on his own.
Leomum works in her room. Suddenly, she hears an alarm.
- Did he fall asleep?? - anxious, she immediately rushes to Leo's room.
But Leo is not sleeping. He is still reading a book.
When he senses the presence of his mum, he just looks up and announces:
- Saturation is 96, 97, 98, it is just the heart that speeded up for a while. It was 146.
Saturation was fine all the time.
Leo was so exhausted that he didn't even wait for the dessert, his love to sleep appeared to be greater than his love to eat;
in the middle of the second dish he just got off the table and went straight onto the couch, where he allowed to be connected to all his devices
... and that was it. He immediately fell asleep.
Leoparents, finally free of necessity to answer the millions of Leoquestions, got lost into the conversation with their friends.
And then they realised that it was 2 am.
- How is it possible? It has just been 11 pm a while ago??!!! We have to call a taxi!!! And carry him somehow!
- We have to watch out that he won't wake up! Otherwise, it will be a mess and he won't fall asleep until 5 am!
- It doesn't make sense... What to do?
- So maybe you could stay here for the night? - offered the owner of the place. - There's one room free, with a big bed!
And I have toothbrushes for the guests...
Toothbrushes as an argument to stay!!!
It's completely new in the life of Leofamily.
Fo the last five and a half years the decision depended on the large medical devices.
Leoparents had to plan everything very precisely ahead, either by taking the ventilator with the cable,
or by coming back early, before the ventilator's battery ran out or before Leo got tired.
They were dependent on electricity, tied by the cable to the wall, forced to charge the battery every few hours.
They could not do anything without prior preparation, they could not go anywhere without carrying the bulky heavy thing.
And suddenly, they realised it is all over.
That now finally they can!
They can be flexible.
They can be spontaneous.
The leash got loose!!!
So, of course, they did stay for the night :-)
- Vegetables? Which ones?
- Carrot, cucumber and lettuce.
During the same day, having a choice whether to have ice-cream or freshly squeezed juice, he chose the juice.
But to keep you calm: sometimes he also wants to eat something sweet ;-)
Overwhelmed by the pacer freedom Leofamily forgot a little bit about Leoblog.
Because who would choose a computer, where the alternatives are travels, mountains, trekking, sightseeing?
Leo spent the beginning of May in a very active way.
It was amazing, much easier than before.
In fact, it was almost normal.
How it was supposed to be from the very beginning!
Leo (with the help of Leodad) walked 6-km long mountain routes. Really difficult ones.
And when, after hours of walking, he was tired, he just lay down and slept wherever it was possible: on a grass, on a bench, in the car.
Leoparents didn't have to be stressed with what was stressing them for the past five and half years.
And they didn't have to carry with themselves the 7-kg, bulky and delicate ventilator,
who could only work for a few hours on a battery.
The little black box became the key to conquer new paths.
Not only the mountain ones.
Because, thanks to that little black box, you could for example lie down on a small sofa next to your mum and just peacefully fall asleep there.
Pretending to be a little mouse.
Unfortunately, a hundred-mile one.
It's called: the mask to non-invasive ventilation.
Leo must learn to sleep with it - in case the pacers would stop being so fantastic and reliable.
The problem is that Leo HATES putting anything onto his face and head,
and the masks are as if taken out from the horror movies, horrible and uncomfortable.
Yesterday, however, to the complete surprise of Leoparents, Leo agreed to try them.
He pretended he was a cosmonaut, he pretended he was a scuba diver, he breathed few minutes in the cosmos and few minutes under the water
and after that, he announced that it was the end, and that he wanted to go back on the land, to have his pacers on.
So for now we have to develop a strategy how to go through this difficult process without too much stress.
For now his biggest motivation to face the challenge is... new place on the shelves.
Leo knows that once he would get rid of the hole, then he would get rid of all the medical stuff related to tracheostomy.
And then there would be free space on his shelves.
So that he could get lots of new books.
But if this reason is enough to let yourself torture like that,
it remains to be seen...
and it is his own version of a known play "true or false?".
- Sweden is in Asia! Stupidity or not stupidity? Tomatoes grow on the trees! Stupidity or not stupidity?
It's very hot on Antarctica! Stupidity or not stupidity? ...
Leoparents are being tested all days, in all possible circumstances and situations,
but the "stupidities" and "not-stupidities" are very predictable - mostly they are stupidities (or not-stupidities)
concerning geography or nature.
Or they WERE predictable, because yesterday Leo unexpectedly changed his theme habit and he screamed:
- I breathe when I sleep! Stupidity or not stupidity?
Surprisingly the quiteness is disturbed by the heartbreaking cry.
Leomum quickly gets up from the bed and runs to her son's room.
- Leo, what happened?
- AAA!!! - Leo is choking from tears, unable to speak a word.
- Leo, what's wrong?
- AAA...aaaa.... I wanted ..... aaa.... to read yesterday evening twelve books...
aaa... and I didn't manage to. I read only.... aaaa.... ten.... aaa....
Phone? Keys? Wallet? Book? Handkerchiefs? Lipstick?
But he carries something completely different.
Leo, in his little black handy bag, carries FREEDOM.
And, since he has this handy bag (and it started working),
he can do things he had not even dreamt about before.
Thanks to this little bag, he can watch a movie in a cinema or a play in a theatre,
and focus only on what is currently on screen or on stage,
and does not have to remember about the breath, does not have to breathe deeper and deeper
looking at the same time at the pulseoximeter to check whether the saturation in right.
He can go out with his parents to an evening party and totally chill out,
because the machine in the bag remembers about his breath, instead of him.
And, above all, he can do something what every child should be able to do:
whenever he feels a need, he can cuddle up to mum or dad and...
just fall asleep!!!
In a restaurant, on a train, in a park, in a forest, in a car.
No one, who has not experienced the horror of CCHS,
can imagine what kind of luxury it is...