20Gate in front of Leohome.
Sometimes it’s closed, sometimes open. It changes.
And it’s so fascinating that Leo felt like talking about it.
So he came up with two faces:
Face A – stands for a closed gate,
Face B –stands for an open gate.
Every time Leo sees the gate, he makes a comment.
According to situation – open or closed, closed or open.

The faces have proved to be a genius and universal invention.
They have opened (face B) a door that were closed until now (face A)
and that lead to new ways of communication.
Leo started using them in other situations as well,
referring to closed/open doors, windows, gates, jackets, garages, containers, books, drains…
Then, he made an observation on street and traffic lights, and their consequences to traffic.
He found an analogy.
Red light – Face A.
Green light – Face B.
The next stage of this evolution:
a vehicle (car/ tram / bus) is moving – Face B
A vehicle not moving – Face A.
That’s not all.
Green colour – Face B.
Red colour – Face A.
An open water tap – Face B.
A closed tap – Face A.
The music is on – Face B.
The music is off – Face A.

Contradictory forces.
Active – passive, static – dynamic, warm – cold,
noise – silence,
permission – ban, existence – non-existence,
creation – destruction, jin – jang,
 Face A – Face B.

And now, dear Leoblog Reader, try to say these in Leo’s language:
A red and green car is going on green lights towards a closed red gate.

P.S. The previous post caused a very strong reaction from the Leoblog Readers.
Apart from numerous comments,
Leoparents received loads of emails with similar stories.
This needs to be talked about…

16th December 2010. Leo’s birthday.
Three years ago he was born.
Do you remember how funny he was?! Then he was taken for observation (…) at six pm he was already at ICU. We were still thinking positive then, remember? We thought it was only a short bad dream.
(…)
In the morning they told us, in the corridor, remember? They told us it was bad. And then. Do you remember? He fought for his breath all day. Brave one.
We were full of hope.
And then the worst night of our lives happened.
He lost his fight…
And then, THAT morning.
Do you remember? …

Leoparents still remember THAT morning.
And they’ve decided to share the story with the world.
As it’s been hurting them for too long now.
They don’t want to carry it any longer. It’s time to take the thorn out of their hearts, lose the burden, clear the air.
The night of 17/18 December, the Doctor woke up Leomom:
- He didn’t make it. We intubated him.
Early in the morning another information arrived.
- He turned off breathing. Completely. He doesn’t fight any longer. He’s 100% dependent on machines.
And we had no idea what it meant. What would come next? Was he going to lie like that forever?
Was he going to make it? There was no time for more explanations.
Terrified senseless Leomom called Leodad.
Leodad rushed to the hospital.
He went into the room where Leomom was in bed among other mothers and their babies.
With a breast pump.
The ward was quiet. Nothing was going on. Babies were sucking on their moms’ breasts.
Moms were dozing off. A lazy Saturday.
A petite nurse with a long plaid was on duty that day.
She came to the room where Leodad was comforting Leomom:
- You can’t be here. Visiting hours start at three. Please leave.
Other mothers took Leoparents’ side.
- But we don’t mind. Please, let them stay together.
- Visiting hours start at three, please leave the ward.
Leoparents went to the corridor. Nevermind.
- Visiting hours start at three, please leave the ward!
- Our baby is dying. Please, let us be together.
- Visiting hours start at three, please leave the ward! – like a robot that hanged.
- I was here all day yesterday. Also beyond visiting hours.
- If you don’t leave, I will call the security.
Leodad didn’t leave.
She called the security. A security guard came.
He split Leoparents apart.
Back then Leoparents were powerless.
Too weak to fight the thoughtless (or was it sadistic?) formalist.
They were paralysed by the fear for their baby. For the future.
And she knew perfectly well that she could do anything, as she had power.
And they had to back off, and humbly accept the wrongdoing.
But today they decided to settle the accounts, say it out loud.
Because this isn’t right. It can’t be that rules are more important than people, restrictions more important than feelings, three o’clock more important than a broken heart, that Ordnung muss sein.
As it doesn’t really have to be like that, it is a question of mere and only good will. Just a little bit of empathy.
Leoparents hope that this post will get through to the petite nurse with a long plaid.
And that it will stick to her. And that she will never ever do such thing again.
That a situation like this won’t happen again.
That no mother with a dying baby will be left alone because of a three o’clock rule.
Leo, December 18, 2010, 10:44 am

18 kilograms, 100 centimetres, 26 alinine repetitions in the PHOX2B gene, 3 years old.
Happy birthday and all the best, Leo!
May this upcoming fourth year of your life bring some positive changes.
You know what changes.
And may there always be plenty of kind people around you!

- And now, Dear Kids, ALL of you sit in a circle….

Healthcare Service.
No you cannot. There is no way. Impossible.
Restrictions. Procedures. Rules.
Absurd followed by another absurd. Nonsense.
Leoparents have had some victories in their struggles with the system,
but mostly there were defeats.
The war has taken many victims; cost some deep wrinkles,
tens of grey hairs, thousands of wasted hours, the wrecked nerves.
And now, unexpectedly, a new, unknown frontline appears,
and the little remaining energy needs to be mustered.

Education System.
The first fortress is the preschool.
It’s high time, Leo needs it,
Leo wants it, it’s very important for his development.
There are three options to choose from: regular preschool,
special need preschool (no! No way, no such option, over Leoparents’ dead bodies),
and integrated one.

The third solution is optimal.
Healthy and disabled children in one group, good examples, stimulation.
It builds up awareness that he’s not the only one who’s sick,
that everybody is different and has their needs.
Staff in such a preschool is specialised and qualified.
Smaller groups. Pedagog. Physiotherapist.
Sensory integration sessions.
Adjuvant care. Speech therapist.
Admission procedure favours children with disabilities.
And if there is a place available, child has to be admitted.*
But.
According to Polish law, Leo is not eligible for this kind of preschool care!
Because disabled are those who: suffer vision, hearing or motor impairment,
or are intellectually or emotionally handicapped.
So: according to Polish law, Leo is healthy.
One might envy such health! Who wouldn’t want that?
So the armament is on.
For Leo to be admitted into preschool,
we will have to g out of our way again, figure out a strategy,
use a trick to outwit the system, call Rademenes, a superhero cat, for help.

*Of course, during classes, one of the Leoparents (or a nurse)

would always had to be around in case anything wrong happened.

Leo was playing with his Aunt Agata.
And was so into the playing frenzy that he pulled out the tube from his larynx.
Scared Aunt Agata called Leomom, and then they decided together that the Aunt has to do THIS herself.
Because she spends a lot of time with Him and it’s better that she gets the first time over with.
The Aunt knows the theory of the tube installation very well, but the practice is a completely different thing…
They prepared a mini laboratory, gauze, bandages, disinfectants, a band, ointment…
The Aunt took the tube with her hand all shaky and started to put it into the hole.
She stopped half way. Because it’s difficult.
Mentally. And technically.
Especially in the beginning.
Leo held still.
Leomom helped.
Leo took the operation like a hero.
He kept still and didn’t try to get away.
He knew the Auntie had to learn how to do it.
After the procedure, proud of her son, Leomom asked:
– Well done, Leo! Who is the bravest here, huh?
– Aga – answered Leo without a moment of hesitation.

P.S. To all who got worried, we would like to clear out that the Aunt is an ICU nurse with many years of experience :)

Leo has a cold, watery eyes, runny nose, wants to be connected to the ventilator every couple of minutes.
Leomom is on antibiotics herself, she would love to be connected to something as well, Leodad is lurching.

And as if that wasn’t enough, we had to go to the Children’s Memorial*.
The nightmares revived.
Especially when we saw the two volumes of Leo’s casebook, a book that is better kept closed, as every page is full of horrors…

P.S.
In front of the Children’s Memorial there is – attention! – one parking spot for disabled.
And it so happens that most of the patients are either disabled or sick. The disabled and sick are often unable to walk by themselves, and depend on medical equipment that needs to be taken up and down the stairs by their carer. So you need to carry the equipment and the baby.
So you’re not able to look for a parking meter.
So, most of the cars are parked illegally.
So, the street outside the Children’s Memorial is one of the favourite spots for the city guards.

P.S1.
There is also a parking lot: 4 PLN for the first hour, 3 for each additional.
A wonderful solution for those who spend all days by their child’s bed for six months a year.

*Fortunately, the doctor was fantastic and managed to neutralise Leofamily’s miserable mood at least for a moment!!!

After the first screening of “Our Curse” in Amsterdam, Leoparents were approached by a couple.
- Our son, D., has Ondine too. He’s Leo’s age.
It was hard to talk at first, as both sides had loads of chaotic questions. It was soon clear that we needed to set up a separate meeting.
So D-Parents invited Leoparents to their home! And so this way, Leoparents got a chance to meet D., and learn how life with Ondine looks like in Holland.
And here is a deep sigh.
Eh…
First of all, D. has a nurse to watch over him EVERY night.
The same Nurse gets up with him every morning and takes him to a special preschool, where D. is under qualified care until 6 pm…
D-Parents sleep well, they are calm and nothing restricts their ability to work.
They are free to choose their doctor, nurse, speech therapist, physiotherapist, ventilator and pulse oxymeter brand, and loads of other things…
D. has a specialised doctor who supervises everything.
D.’s Parents do not spend hours on the internet and on the phone to gain any kind of information or make an appointment.
Everything around D. is adjusted to his and his parents’ needs…
D. has two ventilators; one small mobile one with a changeable battery, and a stationary one with air humidifier, two sucking devices – a portable and stationary one; two pulse oxymeters and a capnography module.
Everything is covered by insurance…
Moreover, the state covered a specialist nursing course for all family members who wanted to get involved in taking care of D.
And so on, and so forth…
D-Parents could not believe that in Poland there is no system of daily help
– How can you possibly live like that!?
– Umm... well…. You can’t, but there is no choice… – Leoparents answered.
And it’s hardly any consolation that it’s even worse in China* than it is in Poland.
And just to add on a side, D. has turned out to be a cheerful, talkative boy.
He’s 3,5 and speaks great (daily speech therapy sessions, refunded by the state).
What made us feel better was the information that a sudden progress happened right after D. turned four.
Leoparents are very happy they met D-Family, it is a very precious connection!

ZFor Leodad’s birthday and the upcoming birthday of Leo – a song.
From Leomom and...

Ding-dong
- Who’s there?
- Delivery.

***

- For Leo.
- For Leo?! That’s my son!
- But he probably doesn’t know how to sign his name yet?
- Actually, he does, but he’s sleeping.
- Then as an exception, I will allo you to do it for him…


***

Leo looks at the big package.
He points to the word Leo”, then he points to himself and says “Me”.
Next, he analyses the surname “Hueckel – Śliwiński”.
He’s thinking.
This is when his parents realise that they probably forgot to tell him what his surname actually was. So Leo’s trying to figure it out himself… “Hueckel” – that doesn’t strike any cord, but the letters “Ś” “I” and “w” look somewhat familiar. That’s right! In the word “Świnka” (Polish for piggy).
So he lifts up his nose with a finger and pretends to have a snout.
The package is for Leo-Piglet.

***

We open the package…and what do we see?!!!
Akryl on canvas! With a signature! Beautiful!
A portrait in motion of Leo’s favorite character – Petit Poilu.
Leo was crazy with joy.

***

The painting was hung immediately.
Leo took advantage of the occasion and demanded that we read him the comic about Poilu, all of the parts. And we want thank very, very much for the wonderful gift!!!!!