Dear Alvarete,
The other day I read that in an archeological site they had found a mother who hugged her disabled son and protected him from everything that threatened her. Thousands of years ago, people protected each other, the feeling of family and friendship was already deeply rooted. Human rights would not be on paper, but good people would have practiced them and fought for them with no reward.
Today we have more rights than ever before, but perhaps we have forgotten the nature and reason for these rights. It can condemn us to prioritize individual rights over collective rights and to confuse right with comfort. Your life and that of many others is not only a legal right but, more importantly, a natural right, and my consolation should be but an obstacle to be overcome.
More information
A few weeks ago you went camping with the Ava Foundation – an association dedicated to improving the quality of life for children with neurological disorders and their families – which allowed the rest of the family to experience what others consider a ‘normal’ weekend.
For the first time, your mom and I could go to your sisters’ volleyball game together, we left the windows wide open without fear that you would jump, we got up late and woke up without the rush that drew your attention to you. We also went out to eat, found out that fast food chains aren’t that fast on Saturdays, and saw my childhood friend Mario at the cinema. Her little sister removed the armrest between her seat and mine and hugged me throughout the movie, looking at me like I’d never been more approachable to her, which made me think maybe I wasn’t doing the right things. all right.
The truth is that it was a weekend where we mentally shut down a lot, not so much physically because we didn’t stop doing things like we never left home. We all had a lot of fun, but as we were walking next to the place where you run athletics with the foundation, one of your sisters looked at me and told me that she couldn’t stop thinking about you and that You missed her so much. These days served us to switch off 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 complain.
This weekend was thanks to the commitment of wonderful people. People who are willing to help and stand up for others. So much generosity can surprise or even provoke resentment, but when you experience what it feels like to help, you understand that the primary beneficiaries are those who help. We are ashamed to ask for help, it makes us uncomfortable, we believe it weakens us and so we reject the outstretched hands of those who love us. We are so jealous of our problems that we solidify them inside and make them an unbearable burden. We don’t ask for help, but we keep complaining, which should put us off.
One of the things I wish for the most is that one day you would have a “friend” outside of your awesome schoolmates. You have many people who love you and care about you, but I feel like something is missing; Seeing you “play” alone with your ball on the floor breaks my heart. I remember when you went to the TGD class (preferred school centers for students with generalized developmental disorders) and in your regular reference class was Sara who didn’t see you as a sick kid, she didn’t see you as one of them the others saw you as his 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 utopia, but I would love it if some of those helping you did it not out of compassion, affection, or even love, but out of friendship. That way their relationship with you would grow, it would be more than just a job or volunteering and only then they would understand that friendship doesn’t require reciprocity and that way they would get from you much more than what they are need they give you.
We must learn to listen to the pleas of those we love, because often they speak without speaking and cry out in silence. That tired-eyed smile or that hunched-shoulder walk. How easy it is to realize that a loved one needs help, but how difficult it is not to convince yourself otherwise.
For me, the mothers I know are the mirror we should all look at ourselves in: because of their ease with which they understand, their strength not to look away, and their ability to act despite tiredness. It is a pity that they do not know how to raise their voice and ask for help, or that our selfishness is bothering our ears. Your tireless mother gives me more strength than anyone else with her example and without her nothing would be the same.
This mother hugging her son could not save him from danger, but she gave him the strength to face her. How many mothers today do the same for their children, being strong for them, crying on the inside and smiling on the outside, showing the world that there is no love greater and more selfless than that of a mother.
I love you,
Alvaro Villanueva He is the father of Alvarete, a child suffering from a rare disease, and founder of Fundación Luchadores AVA. Alvarete is 16 years old and suffers from contiguous gene syndrome, which has led to two other diseases: tuberculosis and polycystic kidney disease.
You can follow Mamas & Papas on Facebook, Twitter or sign up here to receive our bi-weekly newsletter.