Dear Alvarete,
14 years ago you died in our arms. We kept you the minutes – hours to us – like a rag doll it took for the ambulance to arrive. Before that, we had to try to revive you, guided by the doctor on the other end of the line. You didn’t seem to react. Your mother and I thought you were dead.
We could never thank the ambulance doctors who brought you back to life. Although your godfather was behind the ambulance like Michael Schumacher, the paramedics had already abandoned you and left by the time we got to La Paz hospital. True heroes do not seek praise, but it is a sacred duty to be thankful.
Since that night, your disease has evolved from a crouching potential threat to a reality that is spreading with all of its hosts at great speed. You stopped talking and evolving in many ways, in others you 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? To this day I can’t figure out how I could have been so clumsy, but maybe it was what I needed to keep going.
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You will wonder what it means to revisit those days. Many won’t understand it, but it helps me put everything in perspective. It would hurt me to forget it, for it would make me despair of your deeds and resent me as if it were all your fault; when nothing is.
I’m very aware of what happened to you, but I can’t understand what you must be going through. I am surprised by your laughter, your hugs and caresses. My mind cannot comprehend how it is possible to bear the fruits of going through such an ordeal.
Ever since it all happened I’ve lived in uncertainty and plunged into uncharted waters. I’ve drowned several times, as many times as I’ve resuscitated. I felt fear sleeping and relief waking up, but I didn’t give up because you didn’t leave me. If you can smile and hug me, how can I justify my surrender?
You are my greatest role model, my greatest motivation and my greatest weakness. You show me a two-sided mirror in which I see the worst and the best in me: tiredness and weakness that don’t allow me to always be at your level and the ability to love you like the first day.
I try every day not to be a sad person who sees everything negatively, but I also don’t want to be a crazy person who doesn’t accept your reality and a dreamer who lives on illusions. I just want to be a father who values his son’s life in its just and abundant measure. And that’s not always easy, as sometimes it’s easier to get carried away with self-pity. You know, the “me plus” culture.
You can’t pretend to be perfect, nobody is. When you fail, just like when life hits you, you need to pick yourself back up quickly and focus on the next goal. The most important thing is perseverance and not breaking down. If you are successful, you will be successful.
Being a parent isn’t always easy; We tend to idealize our parents, and not reflecting in that high reality about the people we love most can cause us to lower our arms. It is important for goals to be realistic and not idealistic.
We think that we are very important and very smart, I’m the first, which leads us to believe that everything good that happens to us is thanks to us and that everything bad is the fault of others or bad luck; if we should be more aware that the sun rises on the wicked and the good and it rains on the just and the unjust.
Her illness happened, it’s nobody’s fault. There would be no point in pleading guilty or regretting bad luck. It wouldn’t restore your health, but it might take it away from us. Just like when many good things happen to us, we don’t blame an external actor, although perhaps we should be more vigilant here. Out of sheer selfishness we should learn to be more happy and grateful, because that way we would be happier.
Imagine, on the last day of your life, a wish was granted, your last and most important wish, then it’s all over. what would you ask for money, fame, power? Or do you want to reconcile with your father, brother or friend? Or do you have the opportunity to say “I love you” or give a loved one one last hug? We forget that the most important things are at our fingertips. Let’s hope the day doesn’t come when we regret all the hugs and kisses we stopped giving.
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 12 years old and suffers from contiguous gene syndrome, which has caused him two other pathologies: tuberous sclerosis and polycystic kidney disease.
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