I'm 16 years old with a rare genetic syndrome, curly brown hair, and the sweetest eyes. I don't speak, and medical language classifies me as severely disabled, but I have an enormous capacity to love and smile at others. COVID upended my life by taking away my greatest gift: the ability to be with others. Overnight, I found myself locked in the house, cut off from the world and surrounded only by my family. I stopped going to school. I stopped swimming. I stopped seeing my horses. I stopped my music therapy. My only contact with the outside became a computer screen where teachers' faces appeared like magic, therapists, aunts, grandparents, and beautiful classical concerts. At home I felt a constant, strange sense of fear and tension. When I went outside, I saw everyone wearing strange masks, and my mother always pulled me close when I tried to approach someone. Even much later, when I slowly started to see my nanny again, my grandparents who live in Naples, the aides who are my friends, and then my teachers and classmates and therapists — they were all wearing protective gear, and I could no longer receive a kiss, could no longer sit in someone's lap or feel their embrace. Only my mother tried to fill this enormous void. (Riccardo De Micco)
What joy on the day of the first shot! It felt like we were bringing you to a new baptism.
You're right, my love. We spent a year in anguish and terror knowing that you especially — the most fragile member of our family — could get sick and end up in intensive care. You heard my tears, my desperate pleas to your brother not to leave the house, my prayers. How do you protect a child like you who can't stand a mask, who licks his hands constantly, who approaches everyone? How did I find the strength last September to send you back to school and therapy, to open our home to the people who help us, all while terrified you might get sick? Those months were perhaps worse than the first lockdown when we were trapped inside but at least safe. I was forced to take risks just so you could live — like playing Russian roulette. I have never felt more helpless and afraid, forced to expose you to such enormous danger. I weighed whether isolating you completely would protect you from the virus but destroy you psychologically. You would have regressed, losing every small gain we'd fought so hard to win over years of therapy and interaction. I decided to take the risk. What joy on the day of the first shot! It felt like we were bringing you to a new baptism. Then Christmas finally came, carrying hope of the vaccine. After getting approval from the two major Italian centers that specialize in your syndrome, after organizing a webinar about the vaccine's benefits and risks for children like you, I decided to have you vaccinated on your sixteenth birthday. The fear that you might get sick far outweighs the risks of this experimental vaccine. After months of bureaucratic chaos, your turn finally arrived. Italy is the country of red tape, where everything becomes complicated even when the rules protecting severely disabled minors are crystal clear. After a long battle, countless emails, and endless phone calls, I managed to get vaccines for you and for us — protection for the whole family. What joy on the day of the first shot! It felt like we were bringing you to a new baptism, a concrete hope of starting a normal life again. I watch you approach people safely now, taking their hand, letting yourself be held without fear of spreading infection. You seem much calmer. You smile more than you did those dark months. We'll try to make up for the time we lost, with old friends and new ones this strange season has given us.