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No Instruction Manual: Learning to Parent a Child with a Disability

2021-03-30T13:40:42.986Z


The passage of the years withers the dreams that did not come to be fulfilled and you discover that reality, even the one not dreamed of, is worth living it


The first years living with the disability of my son Alvarete I thought he would recover, he asked for the miracle every day, he dreamed of the moment when he grew up and could take him to the Calderón to sing the goals of our Atleti.

Those positive thoughts helped me stay hopeful.

I don't want to think what would have happened to me without her, I would have plunged into darkness.

More information

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

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

Sometimes I wonder if I have lost hope.

I no longer fantasize about watching football with my son or going biking together.

Nor do I dream of the possibility of a better world for my son.

Does that mean that I have lost hope or the ability to dream?

On the other hand, I am able to talk about my son's situation openly, as if it did not affect me.

They will think that I have become that stone that lies at the bottom of the river, that lives surrounded by water, but remains dry inside.

Finally, I fight to find a care solution for my son, in case one day he cannot stay at home with us.

My heart may have run dry.

What if I could chat with my self from a decade ago?

Surely we would end up in an argument where my current self would look like an ogre.

People, from the outside, would immediately sympathize with my old self and find it difficult to understand the new.

I have thought about it a lot and have come to the conclusion that I have changed.

I admit, the passage of time has made me a pragmatic person.

But I believe that I have not lost hope, nor have I stopped dreaming or loving my son with all my heart.

What has happened is that I have added my new skill, pragmatism, to everything I do.

I hope my son gets a good night's sleep or has a good day and doesn't get upset.

I dream of his hugs, his soundless kisses and that look that says it all.

I work hard every day so that he does not lack for anything today or tomorrow, thinking about what is good for him over what is good for me.

I do what I can, which is not much, to make the world evolve, without waiting for it to change, as I know it will.

I have stopped dreaming about things that will not happen to focus on enjoying those that will happen and in this way not letting life pass without having lived it.

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Source: elparis

All news articles on 2021-03-30

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