Once we got past the initial shock—the spastic trauma, the breathing difficulties—I remember thinking I almost wished the doctors would remove all those tubes and let her go.
That's when I understood: her growth would depend entirely on us, on my wife and me. From that moment on, we've worked to make her as independent as possible. We figure out what she can do alone and what absolutely needs our help. We get there with a lot of patience, a lot of persistence, and yes—sometimes with a firm hand.
My work keeps me on shifts, but I'm glad to spend time with Arianna when I'm home. I help her with her schoolwork—she dictates answers because she can't write, and she's learning to use the computer. I take her to swim lessons, to therapy, wherever she needs to go.
We're lucky, though. Arianna is friends with all her classmates at school and gets along well with others. She's very close to her older sister Valentina, who's 23, and then there's the Fede e Luce community.
That said, we do have our difficult moments with her—but then, who doesn't with their own children? Sometimes I can't figure out what she's trying to tell us. But after a while, thanks to my wife, Valentina, and patience regained, I manage to work through it.
In everything we do to raise her, love is essential. But it's not enough. The experts—AIAS, the school psychologists—they offer help, but only for short stretches. It's never enough. Everything ends up falling back on us parents. Honestly, I've had to teach myself as I go.
edited by Sergio de Rino, 2005
