Letter to my son with a disability: "I just want to be a father who values ​​his son's life"

Dear Alvarete,

14 years ago you died in our arms.

We held you like a rag doll for the minutes—hours for us—it took for the ambulance to arrive.

Before we had to try to revive you, guided by the doctor on the other end of the phone.

You seemed not to react.

Your mother and I thought you were dead.

We could never thank the ambulance doctors who brought you back to life.

Even though your godfather was like Michael Schumacher behind the ambulance, by the time we got to the La Paz hospital the paramedics had already left you and left.

True heroes do not seek praise, but it is a sacred duty to be grateful.

Since that night, your disease went from being a crouching potential threat to a reality that was advancing at great speed with all its hosts.

You stopped talking and evolving in many ways, in others you have never stopped.

I miss how you used to call me and tell me: "I love you

dad."

Can you believe I lost the recording I had on my phone to cheer me up?

Even today I can't explain how I could have been so clumsy, but maybe it was what I needed to keep going.

More information

Letter to my son with a disability: “It is inevitable to feel attached to other people;

we must not fight against it, even though it makes us vulnerable”

You will wonder what it is to remember those days again.

Many will not understand it, but it helps me to put everything in perspective.

It would hurt me to forget it because it would lead me to despair at your actions and get angry as if everything was your fault;

when nothing is.

I am very aware of what happened to you, but I cannot understand what you have to live through.

I am surprised by your laughter, hugs and caresses.

My mind is unable to understand how it is possible to bear those fruits living through such an ordeal.

Since everything happened, I have lived in uncertainty, diving into unknown waters.

I have drowned several times, as many as I have revived.

I have felt fear when sleeping and relief when waking up, but I have not given up, because you have not left me.

If you are able to smile and hug me, how can I justify my surrender.

You are my greatest example, my greatest motivation and my greatest weakness.

You show me a two-sided mirror, where I see the worst and the best of me: tiredness and weakness, which do not allow me to always be at your level, and the ability to love you like the first day.

Every day I strive not to be a sad person who sees everything negative, but I also do not want to be a madman who does not accept your reality, nor a dreamer who lives on illusions.

I just want to be a father who values ​​the life of his son, in his fair and overflowing measure.

And this is not always easy, since sometimes it is easier to get carried away by self-pity.

You know, the “me plus” culture.

You can't pretend to be perfect, no one is.

When you fail, just like when life hits you, you have to pick yourself up fast and focus on the next goal.

The most important thing is perseverance and not collapsing.

If you succeed, you will succeed.

Being a parent is not always easy;

We tend to idealize our parents and, by not seeing ourselves reflected in that high reality about the people we love the most, it can lead us to lower our arms.

The important thing about goals is that they are realistic and not idealistic.

We think we are very important and very smart, I am the first, which leads us to think that everything good that happens to us is thanks to us and that everything bad is the fault of others or bad luck;

when we should be more aware that the sun rises on the bad and the good and it rains on the just and the unjust.

Your illness happened, it's no one's fault.

It would be useless to find guilty or feel sorry for bad luck.

It wouldn't restore your health, but it could take it away from us.

Just like when many good things happen to us, we do not look for blame in an external actor, when perhaps here we should be more perceptive.

For a matter of pure selfishness, we should learn to rejoice more and be more grateful, because that way we would be happier.

Imagine that on the last day of your life you were granted a wish, your last and most important wish, then it's all over.

What would you ask for?

Money, fame, power?

Or would you ask to reconcile with your father, brother or friend?

Or have the opportunity to say “I love you” or give a last hug to a loved one?

We forget that the most important things are at our fingertips.

Let's hope that the day will not come when we regret all those hugs and kisses that we have stopped giving.

I love you.

Álvaro Villanueva

is the father of Alvarete, a boy who suffers from a rare disease, and is the founder of the Fundación Luchadores AVA.

Alvarete is 12 years old and suffers from contiguous gene syndrome, which has caused him to have two other pathologies: tuberous sclerosis and polycystic kidney disease. 

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