in the rays of the morning sun,
there is a young boy sitting.
He is wearing a traditional djellaba.
He is eating dates and drinking tea.
He is reading a book about Islam.
He is smiling.
Seven years ago one Child didn’t want to be born.
He resisted to leave the mother’s womb,
as if sensing that life would not be easy,
that he would have to experience unbearable suffering;
separation with bis parents, physical pain, fear.
And he was right, because thirty six hours of the childbirth appeared to be nothing
compared to what was about to come.
The doctors didn’t give him any chances for normal life.
Black, pessimistic visions and words were even worse than the medical procedures.
And the procedures were brutal.
The parents of the Child wasn’t sure, if it was worth to fight,
if the life with the Curse is worth living at all...
It all was ages ago.
Today the the parents of the Child know that it was worth it.
They know they made a right decision.
They managed to get away from the black despair and ended up on the black land,
where they decided to celebrate the Child’s seventh birthday.
They are sitting now together on top of the roof of one of the riads in Fes medina quarter
and they are observing as their son, in the rays of the morning sun, reads the book about Islam.
Sometimse he stops the reading, to instruct his younger brother,
or to tell something to his grandma, who is there together with them.
Leoparents know, that Leo’s life will be complicated.
And probably, all the time, there will be this terrible word “almost”, which would separate them from normality.
But it may be life full of joy and happiness.
Beacuse this is what Leo is like.
Joyful and happy.
You’ve been together with sun for the last seven wonderful, but also very hard years.
For us you were a great support, comfort and help.
You were/are our Friends.
Thank You for that!
Today we say farewell to You.
Leo is a big boy now. In half a year he will go to school.
He has his own friends, his own secrets, his own little boy problems.
He needs some privacy.
Therefore, we made a decision to finish writing this blog.
It feels strange...
Please, remember about us and sometimes pay us a visit here.
We will post some photos, Leodrawings and information about different events and actions.
We are already planning three big things, which will be addressed to You
and we hope they will deliver you lots of good emotions.
So... for sure we will continue to meet with You.
Only in a different way.
See you soon!
P.S.2. Merry Christmas !!!
P.S.3. In the meantime we will try to update the previous English posts on our blog. Last year was really intense and we didn’t have to translate them into English.
that your son will have the tracheotomy until the end of his life...
- this is what Leoparents heard at the beginning of 2011.
They failed to accept it.
So with a great joy they share the news with you
that on October 19th 2016
LEO WAS FINALLY STITCHED!!!
Tracheotomy is just a remote past now.
And what is left, is just a small, horizontal scar.
The truth is that several months have passed
since Leoblog readers have been truly up to speed on what has been happening.
It’s now time for a coming out.
The first line is red and clear.
The second one more so.
The doctor confirms the second line is there.
Leofamily is entering a new stage:
Leo will be a big brother.
Leomom is certain that it’s a girl
She feels a feminine energy
Leo and Lea. Wonderful!
Meanwhile, a battle with breathing pacermakers rages in the foreground.
A fight to get Leo on a plane, a second operation, intensive therapy…
During the test, it’s revealed that we need make a slight revision.
Lea is Teo.
Leo and Teo, also beautiful
- Hello, My name is XXX, I am calling from the Genetic Center at the Institute of Mother and Child.
Am I speaking with Magda?
- I have some news for you. It’s not official yet, but we checked your child’s DNA.
We did not find a mutation of the PHOX2b gene. The child does not have CCHS.
HE DOESN’T HAVE!!!
HE DOESN’T HAVE IT!!!!!!
The breathing pacemakers work perfectly.
Teo doesn’t have CCHS!
The fight for Leo’s decannulation continues.
Leoparents want the tracheostomy closed before Teo comes into the world.
- Once I don’t have a hole, I’ll give the snoteater* to the little baby, Leo suggests generously.
* snoteater is a Leo's name for the suction machine
We did it!
Leofamily is on the right path!
But the path begins to veer.
Sleepless nights. The hole doesn’t want to heal.
Leomom notices two changes in her breast.
The radiologist isn’t worried.
- It’s normal! Lactating breasts always have lots of lumps.
Then, she rubs some gel on Leomom, holds the machine up to her breast and stops smiling.
- You don’t like what you see?
She says something about working with the gynecologist, surgeon and oncologist (who?? what??).
She refers Leomom for a biopsy and writes CITO* in big letters.
* CITO - latin medical term for swiftly
- You’re not the only one who has cancer while pregnant!!!- a woman yells at Leomom in the hospital waiting room.
“Normally” you can’t get anything done CITO. You have to do it privately.
Leomom has a fine needle aspiration biopsy.
- This sort of thing sometimes happens during pregnancy. There’s a chance that it isn’t malignant - says the lady with the needle in her hand.
And then she sticks Leomom several times with a needle.
Five long days pass.
There's hope / it doesn’t feel right / there’s hope / it doesn’t feel right / there’s hope…
- Hello, XX speaking. I performed your biopsy last week.
- I don’t have good news for you.
- All of the transformations are malignant. The tumor is malignant.
FUCK, FUCK, FUCK!
The horrible diagnostic process and plan for treating Leomom are underway.
Leoparents must make a series of very difficult decisions.
August 25. Leomom finds herself in the surgical oncology unit.
She emerges cut up, but with a sense of relief -
The source of evil has been removed from her body.
September 3. At 12:05, Teo comes into the world
He weighs 3 kilo, breaths, and is amazing.
Leo is a big brother!
September 12. Leo/Teomom starts chemotherapy.
P.S. Leomom is in the hands of capable doctors whom she trusts
and is currently undergoing treatment.
Leoparents ask for privacy and that you withhold your calls, emails and questions.
Leoparents have decided to follow western medicine and ask that you do not send information
about magical herbs, diets, therapies, or healers. There will come a time for that.
Right now, we need peace and focus.
We ask that you leave any comments below in the comment section.
- 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...