Being the parent of a child with a disability: "Life is not what we dream of, but what we feel"

On

, with the aim of giving it visibility and achieving greater equal opportunities for people with disabilities.

In Spain there are more than 3.8 million people with disabilities (INE 2008), of which 268,633 have intellectual disabilities (IMSERSO 2015).

Sunday five in the afternoon, I find myself walking through the mall with my four children and my wife.

The children are happy, lights and Christmas decorations decorate all the walls of the shops.

For a moment, we forget the miseries of the pandemic and allow our minds to move to more endearing places, such as those that Christmas evokes.

Children begin to glimpse the arrival of the Magi and adults enjoy remembering our childhood through them.

More information

• "What kind of society are we if a boy with autism can't have a simple coke with another kid?"

• World Rare Disease Day: "I'm not weird, I'm unique!"

• Children with tuberous sclerosis: living with uncertainty

Suddenly, my glasses fly off, my mask ends up on the ground and by the time I realize it, I am receiving the second arreón from my eldest son, Alvarete.

I quickly react, I get off the cloud in which I was to grab and contain my son before the furtive glances of the people.

As soon as he came he left, Alvarete smiles again and starts jumping for joy.

At that moment, I notice how every milliliter of the blood in my body begins to weigh leaden and I feel it rush through my veins towards my feet.

It is at that precise moment when my little daughter pulls me by the arm and says “Look, dad, Alvarete is very happy.

Take your glasses ”.

And he runs down the central aisle chasing his brother.

We all smile again and continue dreaming of Christmas as if nothing had happened.

My son Alvarete has a rare disease that causes tumors to grow all over his body.

They have especially attacked his brain and cause, among other things, an intellectual disability with relevant behavioral problems.

Intellectual disability is neither pretty nor funny.

Forgive me for saying it like that, but it is reality and people have to know it;

It is not worth staying on the surface to avoid empathizing and, therefore, suffering.

It should be remembered that we all have to live with this problem, whether it is for a son, a brother, a father or oneself.

It is the price of longevity.

In the end, what people with intellectual disabilities and their families need, what we need, is help;

help from institutions, but also help from society that so often looks the other way.

We cannot forget that what transformed us and made us human was nothing more than taking care of each other, which in turn brought medical advances and increased life expectancy.

This failure to deepen has led intellectual disability to be the forgotten disability.

All disabilities have been put into the same bag with the healthy objective of giving everyone the same, when not everyone needs the same.

Does it make sense for the legislator to limit by irrelevant criteria, such as the age of the person, certain aid for serious and irreversible disabilities?

This causes terrible grievances and injustices such as the Royal Decree that regulates the right of parents to benefit from a reduction in working hours to care for their child affected by cancer or another serious illness (many of which are disabling).

When the child turns 18, parents will have to decide between working or taking care of their child, with all the implications that entails.

Not to mention access to education, housing, sports, adapted medical services or so many other things.

People with intellectual disabilities, above all, are people with capital letters, full members of our society and deserve to be treated as such, giving them the help and tools so that they and their families can live life and not survive it, as they do now. .

In life you can stay with the bad, the anger of my son, or you can stay with the positive vision of my little daughter: "Alvarete is happy."

I would be lying if I did not recognize that sometimes it is difficult for me to be positive, that I ask myself many reasons and that sometimes I want to escape from my obligations.

But in those moments I realize that life is not what we dream of but what we feel.

It is wonderful despite its difficulties and in them we find the great virtues of humanity.

The great figures and advances of humanity have arisen out of difficulties and are still opportunities for people, whether anonymous or public, to shine for others.

And it is nothing else that I demand today, to each one of you, that we shine so that people with intellectual disabilities can live life.

You can follow De mamas & de papas on