Giovanni is seven years old, turning eight in February. He has multiple disabilities. What that means: he could have been perfectly healthy, but he didn't breathe enough at birth. Giovanni doesn't walk, though we hope he will one day. He doesn't speak, but he makes himself understood very well. He doesn't see the way we do, but he shows us so much. If you ask him his name, he answers by pursing his lips in a smack. Smack as kiss.
Sometimes I think Giovanni lives himself as a kiss, and in many ways he is love in its purest form. Giovanni loves to play, but not the way other children do. I don't spend my free time with my son—I simply don't know if I can make myself understood to him. I spend my time with him. I'm still in that phase as the parent of a handicapped child, the phase where I haven't moved past the anger. So even when I'm alone with him, part of me plays and part of me curses some doctor who hurt him or some judge who denied us justice. The typical scene goes like this: he sits across from me in his high chair with a nice table in front of him, surrounded by his favorite toys. One day it's the farm with animals, the building blocks that let him make towers impossibly high, the piano or the little snail that plays music, his beloved cardboard books.
All toys for children from three, six months on. When I think about it, I get angry. I think things weren't supposed to go this way, that I can't understand what Giovanni grasped just now from the nursery rhyme I finished reading to him, whether those plastic ducks from the farm that I move left to right are really ducks to him or just shapes. I'm not ashamed to say that in these moments I have to stand up from the chair, walk away, heal my wounded pride somewhere else. But here's the thing: there's no time to feel sorry for yourself with Giovanni. Or at least not for long. He lets you go for maybe ten seconds. After that he starts calling for you and won't stop until you're back in your seat across from him. One of his favorite games is pretending to send you away. With his left hand, which has to do the work of both, he makes an unmistakable gesture: goodbye, goodbye. Go on, leave. But when you actually start to go, he calls you back with a mocking laugh.
So you have a choice: you come back, or you hide behind a door or wall and peek out. The result is guaranteed: his laugh and his eyes like radar searching for you, finding you at last, and lighting up. It's one of those moments when you feel a fulfillment that surpasses everything bad you know, all the awareness of his limits and your own. You understand that he has given you a moment of love. You remember what a good therapist told us—desperate parents—when Giovanni was just a few months old: "He will always do his best."
There are also, in our time together, some rituals that go beyond play. Food, for instance. When I'm home and generally when it's mealtime—lunch or dinner—Giovanni will ask me to feed him. It's not just a polite request. He literally takes his mother's wrist and prevents her from feeding him. I have to surrender to the gentle violence. I sit down, I start talking to him, feeding him, and more and more often I let him take the spoon to feed himself. You could say I'm luckier than his mother because I can choose when to spend time with him. Giovanni knows this, and I like to believe he thinks of me when I'm not there, that he thinks about when we'll be together and exchange kisses and raspberries.
by Carlo, Ombre e Luci no. 92, 2005
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