When you look back at life - you see a network of mysterious connections,
a maze of intertwining and intersecting paths.
You start to see facts and events,
that you were unaware of at he time of their occurrence.
Some issues get explained, other ones get complicated or simply surprise us.
One day Leomom came across a blog.
Right from the beginning she became a fan,
emotionally involved in the life of its protagonist and the author.
She liked Joanna a lot. Joanna, called the Headscarf.
Joanna’s story, just like Leo’s was made into a documentary.
Two stories, two blogs, two films.
The paths of both films have intersected many times at numerous film festivals,
but recently both of them were next each other on the Oscars shortlist.
However, nothing compares to the fact
that the first entry in each blog was made on the very same date, 9 April 2010.
Then the memorable date: 10 April 2010.
Both Joanna and Leomom, completely unaware of each other’s existence, went to a doctor.
Both doctors examined their bellies carefully.
Joanna’s doctor confirmed that she had cancer.
Leomom’s doctor confirmed that she was pregnant.
Both women left the surgery aware that nothing would be as it was before.
There was a beginning and there was an end.
The background to those two facts?
A sound of a falling plane from afar.
It does sound like a film script, doesn’t it?
Although Leo is in the hands of great specialists
and Leo’s parents put a lot of effort into improving his speech abilities,
it is still far from everybody’s expectations.
The reasons seem to be of psychological nature.
Not speaking seems to be a perfect and safe hideout.
Not always worth hiding in, as it seems.
Sometimes it makes sense to get out of the silence
and communicate with the environment.
Thus the lack of progress is neither logical nor harmonious.
Leo’s speaking skills are very selective and related to functionality of speech.
Leo has no problem saying:
- I don’ wanna slee
- I wan a sandwich
- I wan mil’
- I don’ wan to go hom'
- Give me
- Mo (More)
- Still fi mo mints (still five more minutes)
Plus „motoring" vocabulary:
BMW, Mercedes, KIA, Honda, Skoda, tunnel, bridge, parking, gas station,
His favourite phrases are those that can be used as verbal shields:
- I don’t know!
- I can’t!
- I won’t give back.
The rest is silence.
Leo was strange from early morning.
Absent, annoyed, uneasy.
His mom did not like it, neither did his schoolteacher.
Neither did his therapist.
So, instead of working with Leo,
he put him on his back and started massaging his aching belly.
With his hands the therapist felt something that he did not like.
Something that was clearly visible.
-Go and see the doctor - said the therapist
It crossed mom’s head that it could have been an “N”
- the vicious “N” that nests in the child’s belly,
and is particularly dangerous to all Ondine Curse children.
-Please come - said the doctor on the phone at Children’s Memorial Health Institute.
So Leo and Leomom hurried to the clinic.
On the way there they listened to a radio programme
on financial support for cancer patients.
The entrance to the building reeked of cigarette smoke,
the hospital corridor - of disinfectants.
Everything was awfully familiar.
Registration, general tests, urinary test, C-reactive protein, abdominal ultrasound.
A sad corridor, sad walls with sad cartoon characters
unsuccessfully trying to cheer up the queue of patients.
All test results were delivered to Leo’s family within one hour.
Great results - the alarm turned out to be false.
The siren blaring inside mom’s was turned off.
PRESCHOOL, WEEK 9
- Preschool is good for him. Every day he is getting more confident and more open.
He is more and more willing to integrate with other children - Leoprechool teacher
greets his mum.
- He has got a great ability to focus and he is willing to practice
- adds his speech therapist.
- He is intelligent, well-organised and has got a great sense of humour.
And knows some English (Whaaaat????)
In general, he is more knowledgable that many of the older kids
- complements the preschool therapist.
P.S. „Our Curse” was nominated to IDA Documentary Awards 2014
in the Best Short Award category !!!!
All summer long the little professor collected leaves (latin: folium).
He looked for new species, which he analysed, named, compared and dried.
He discovered beech, maple, larch, clover, forget-me-nots, and nettle.
He became an expert in botany, specialising in dendrology.
The effect of his study were three volumes of herbarium.
The autumn was equally benevolent.
The professor has discovered that autumn leaves:
- change colour
- change their location
He has evidence to prove that. But this as not the end of the study.
The leaves will undergo further observation, the next stage is planned for April 2015.
The results will be published in May 2015.
At Leoblog, of course.
Last week we participated in II Attachment Conference in Warsaw,
the main subject of the event being attachment parenthood,
an idea close to Leoparents’ hearts.
One of the conference panels was devoted to developing family ties with problem children.
The speakers were Smith-Megenis Mum (Kasia Pietras),
the Feeding Father (Sebastian Łukomski),
Łucja Sokorska-Maj, chairwoman of Synapsis Fund, and Leomom,
at the absence of Leodad, who was on the other hemisphere at that time.
The discussion was moderated by Beata Jewiarz, a journalist,
who hit the spot with her questions.
How was it at the beginning? How did you learn at the disease?
How about the acceptance process?
How do you handle the news about your child’s serious condition?
Can you accept it?
- It is like mourning - said the Feeding Father
And he is right. The beginning is like mourning.
You hear words like: incurable, never, forever.
You have to part from normality, dreams and plans.
You have to face new unwanted reality.
How to build ties with a child in this situation?
How to build ties with a child that is emotionally or physically detached?
With a child in a medically-induced coma?
With and incubated child?
With a child that you cannot hold in your arms,
and with a nurse instructing you on how to touch your own child?
How do you build tis with a child that cannot control his or her emotions?
Have you ever experienced stigmatisation?
How do your family/friends/ coworkers/neighbours react to the fact that your child is ill?
Are they up to this situation?
Or do they withdraw and you are no longer in touch with them.
How about medical/psychological/state support?
Are there any procedures?
Any paths to follow?
Is the child aware of his/her anomaly?
Is he trying to boss his parents, using his condition as a tool?
How to handle this? How to raise such child? To be tolerant or not?
To follow or not to follow he child?
How to do it?
Finally how to take care of oneself not to get crazy?
How not to give in to frustration when life is full of constant fear,
exhaustion, isolation and helplessness?
How to carry out a constant fight against the system?
How to be happy?
It was a very useful and frank discussion.
Although, limited by time frame, we only touched upon the problems.
They are numerous. And we need to handle, name, describe and define them.
Thanks to Agata Aleksandrowicz and Mamania for the discussion ideas,
for the initiation, your time and attention.
Let’s talk about it.
P.S. Unfortunately some attendants did not like the idea (or the phrase)
of being bossed by a child, because a child can merely express its needs.
Therefore the discussion took the direction that it should not take.
We can discuss if a four-year old may boss his parents
this is what the conference discussions are for - but we have to discuss in style.
And it is important not to take phrases out of their original context,
which was: total acceptance of the problem children and their conditions.
This comment hurt.
It was an important day.
Leo was visited by his friend, Emi.
Like Leo, Emi is Ondine’s godchild,
which means that she is equipped with all the characteristic accessories:
a tracheostomic tube, ventilator, a pulse oximeter, etc.
The kids have known each other for a couple of years
so each encounter is even nicer than the previous one.
Also, plying together and communicating is getting better.
Leoparents mind that Leo sees other people’s tracheostomies,
but it was only yesterday that Leo actually saw somebody sleeping tangled in cables and tubes.
This view has filled him with utter joy.
He leaned over sleeping Emi, dumbfounded.
Admiration and delight were all over his face.
He kept pointing to
Emi, pulse oximeter, ventilator,
Emi, pulse oximeter, ventilator,
Emi, pulse oximeter, ventilator,
Emi, pulse oximeter, ventilator.
A perfect view.
P.S. „Our Curse" was awarded at:
– Jimmy Stewart Memorial Crystal Heart Award
for Best Student Documentary at Heartland Film Festival
– Best Short documentary at Woodstock Film Festival
– Special Mention at IndieCork Film Festival in Ireland
last but not least..
our film was among the documentaries on the Academy Awards shortlist.
We are talking about the Oscars!
Leoblog readers may not know that since April Leo has been on diet.
At the suggestion of his neurodietetician
the following products have been eliminated from his diet:
Milk and dairy products (yes, the beloved cheese, too),
wheat and a few other products. It was an experimental step.
Hard to put into life at the beginning,
as Leo’s family fed mainly on diary products.
In the end it turned worth while.
Leo slimmed down, his digestive problems calmed down and most importantly,
he manages to get rid of the mucus from his tracheostomic tract.
This resulted in fewer absorptions.
Leoparets followed his dietary proscriptions, out of loyalty and out of comfort,
after all it wouldn’t make sense to serve two menus under one roof.
So Leo’s family kitchen turned into a vegetable mill.
Only sometimes, when Leo is not looking,
his parents are led astray and sin in a pizza place.
For Leoparets who seldom walk and always run
having to move around with Leo at their side was a lesson in patience.
Leo never runs.
Leo is a slow and meticulous contemplator of surrounding reality,
moving at the speed as the slowest turtle.
He is a living proof that minus and minus gives plus.
He is never short of time, because his time expands according to his needs.
In his timespace there is always time to analyse everything on his way.
For cars, above all.
A walk along a line of parked cars is a real horror to his parents
who are already fifteen minutes behind their time.
- Look, a Mazda - Leo is delighted;
Mazda has got a logo on the hood,
but it is vital to check if it's got another one at the back.
And on the wheelcaps.
Checking the left side, then the right side.
Yep, there are six logs on a single Mazda.
Centimeters from a Mazda there is a Toyota.
- Look, a Toyota!
It's got a logo on the hood, no logo on the sides or at the back.
Toyota has got two logos and Leo's family is already 20 minutes behind the time.
Next, there is a Fiat, and a few more car models.
They'd better have their logos on,
otherwise Leo will have to be lifted up to peek inside and check the logos on the steering wheels.
Other, elements of the urban landscape are equally fascinating and worhty of noticing:
dead leaves, dogs, pigeons, pigeon droppings, manholes, and pavement patterns.
Leofamily is moving at the speed of five meters per hour.
This generates a 24 -hour delay per week.
If you are familiar with any teleportation techniques -
please share them with us.
PS. „Our Curse" was awarded as the best documentary of Raindance Festival in London.
The schedule of October film screenings: