Beyond Achondroplasia

Growing together with Clara



Man has, by nature, desire to exceed from the piers: to be more, better and / or the first. But this demand for obtaining any obvious difference has to be a difference by getting desirable or even enviable by others, meaning that the demand to be different must be limited to what others may also wish.

And yet, even wishing to be difference from the group, Man reproves physical difference and/or intellectual reduction that distinguishes them from their social group .
So there are two distinct points of view and will:
1 – Exceed having something different from the group achieving notoriety ,
2 – Having a physical difference or reduced intellectuality is socially reprehensible and causes repulse.

Sitting in a bench, next to someone who owns an expensive mobile phone, might be indifferent or can trigger desire to have one too or some degree of envy .
But if instead of a person with an expensive mobile phone was sitting on the same bench someone with some kind of physical difference or reduced intellectuality, something strong leads me to believe that bench would not be used by anyone else while that person was there.

Is this a kind of reflex act? It is still the primitive brain, the archipallium, arising from its depths, in a way to protect it´s existence because someone different is nearby?

I try to understand. Yes, I try because I think there must be a logical explanation for the reactions of disgust by others who have a difference that is socially undesirable.
Now, what I do not understand at all and I refuse to accept is the inhumane way in which a part of society, and I refer to the some doctors, act and react when a mother or a father of a rare child wants to do more or go beyond.

In the last days I have read the book of Raríssimas: ” Lives rare”. I couldn´t read the stories of those children without tears and contain emotions. Clara gave my world new insights, but I think any mother and father who read this book will feel maybe two things: immense pain to know that there are children with differences (more or less prominent, more or less problematic for health and integration this child) and an immeasurable joy for your child to be healthy . Perhaps this father and mother might think twice when waking up tired in the evening by their child that had a fever for 2 or 3 days, because there are mothers and fathers who care for their children every day to discover that there is a new life, each day they say “good morning!” to their child and that every night, when lying sleepless, the life of each parent die, exhausted, to wake up again the morning after.

It hurts me so much to read in almost all the stories that parents have gone through unimaginable hardship to get the medical care and education for their child.
In many stories, parents talk about the incomprehensible inhuman doctors that initially observed their child. I read in a story a mother saying words that she heard from a doctor: “Why do you want to take care of your child? He will only be a vegetable…”.

On the top floor of my college was written this maxim: ” Doctor who knows only medicine, doesn´t know medicine at all” – Abel Salazar .

I know that many doctors don´t understood/understand the meaning of these words and I know that many govern their life for their professionalism and not for the humanity. But I am glad to read that later, sometimes too late… a human doctor comes and acts in the well-being of the child and parents and helps with humanity and knowledge. Parents seeking to find that doctor know and recognize him when they find him, because humanity generates empathy and creates bonds.

Something equally incomprehensible in several stories that I read, it was the almost consistently repulsion several kindergartens and teachers to accept a rare child.
I read a story of a mother who said, ” The teacher asked me to take my son later and to get him sooner because his delay changed the plans of the room.”

It´s hard to swallow with this.
How is this possible ?
Mankind in these cases seems to be an abstract concept.

But these parents and all parents facing the difference unwanted, transformed into higher beings, discovering strength they did not know to exist and change the world around with a smile, even when it costs hard to breathe.
And some parents lose their children rare .

How do you live without a child ?
How do you live with a rare child ?

The first question, I have learned the answer every day! For the other, I live in ineffable joy for being completely ignorant .

But I’m sure of something: the meaning of life with a rare child is present every day, because all the kisses count, all warm caresses touch inside, all the tenderness fills the soul, all the little things are a joy and all that Love gives life to those who once felt not being able to live anymore.

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