Letter to my disabled child: we are jealous of our problems, but we must ask for help

Dear Alvarete,

The other day I read that in an archaeological site they had found a mother hugging her disabled son, protecting him from whatever threatened them. Thousands of years ago humans already protected each other, the feeling of family and friendship was already rooted. Human rights would not be put on paper, but good people were already applying them and fighting for them without the need to be rewarded.

Today we have more rights than ever before, but perhaps we have forgotten the essence and the reason for these rights. Prioritizing individual rights over collective rights and confusing law with comfort is what can condemn us. Your life, and that of so many others, is a right not only legal but, even more importantly, natural, and my comfort should be nothing more than a handicap to overcome.

Read moreLetter to my child with disabilities: smiling as an antidote to ignorance and adversity

A few weeks ago you went camping with the Ava Foundation – an association to improve the quality of life of children with neurological disorders and their families – which allowed the rest of the family to experience what others understand for a "normal" weekend.

For the first time, your mother and I could go together to watch the volleyball game of one of your sisters, we left the windows wide open without fear of you throwing yourself, we got up late and without the rush that your attention generates when you wake up. Also, we went out for dinner, discovered that fast food chains are not so fast on Saturdays and saw my childhood friend, Mario, at the cinema. Your little sister removed the armrest between her seat and mine and kept hugging and looking at me throughout the movie, as if I had never been so available to her, which led me to think that maybe I'm not doing things quite right.

The truth is that it was a weekend in which we disconnected a lot mentally, not so much physically, having not stopped doing things, as if we had never left home. We all enjoyed it very much, but when we were walking next to where you do athletics with the foundation, one of your sisters looked at me and told me that she could not stop thinking about you and that she missed you very much. Those days served us to disconnect and rest, but also to realize how much we depend on you and your smile. I hope to keep that in mind every time I go to complain.

That weekend was thanks to the dedication of wonderful people. People willing to help and give themselves for others. Such generosity can surprise or even generate rejection, but when you experience what it feels like to help, you understand that the main beneficiaries are those who help. We are ashamed to ask for help, we are uncomfortable, we believe that it weakens us and, therefore, we reject the outstretched hands of those who love us. We are so jealous of our problems that we entrench them inwardly, turning them into an unbearable burden. We don't ask for help, but we don't stop complaining, which should disqualify us.

One of the things I ask for the most is that one day you have a "friend" outside of your great schoolmates. You have a lot of people who love you and care about you, but I get the feeling that something is missing; When I see you "playing" alone with your ball on the ground it breaks my soul. I remember when you went to the TGD class (preferential schooling centers for students with pervasive developmental disorders) and in your ordinary reference class there was Sara, who did not see you as a sick child, nor did she see you as one more, she saw you as her friend Alvarete. He invited you to his house and played with you, despite your difficulties, and even years later, from Germany, he still remembered you.

It may seem like a utopia, but I would love it if some of those who help you did not do it out of compassion, affection or even love, but did it out of friendship. In this way, their relationship with you would grow, it would be more than just a job or volunteering and, only then, would they understand that friendship does not require reciprocity and, in doing so, they would receive from you much more than they give you.

We must learn to listen to the requests of the people we love, as they often speak without speaking and shout silently. Those smiles of tired eyes or gait of slumped shoulders. How easy it is to realize that a loved one needs help, but how hard it is not to convince yourself otherwise.

For me, the mothers I know are the mirror in which we should all look at ourselves: for their ease of understanding, their strength not to look the other way and their ability to act despite fatigue. Too bad they don't know how to raise their voices asking for help or that our selfishness makes our ears dark. Your mother, tireless, with her example transmits more strength to me than anyone else and without her nothing would be the same.

That mother who embraced her son could not save him from danger, but she gave him the strength to face it. How many mothers today do the same for their children, being strong for them, crying inside and smiling outside, showing the world that there is no greater and more selfless love than that of a mother.

I love you

Álvaro Villanueva is the father of Alvarete, a boy suffering from a rare disease, and founder of the Fundación Luchadores AVA. Alvarete is 16 years old and suffers from the syndrome of contiguous genes, which has caused him to have two other pathologies: tuberous sclerosis and polycystic kidney disease.

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