I know it's foolish. It's pride. It's wrong. I know all of this—I've thought it, turned it over, felt it, suffered it. I know I should take her out, into the world, with everyone else, wherever I go, to any place at all.
But it's easier said than done.
Because then you remember that woman who doesn't understand anything, the way she looks. That man who turns away. The child who stops and stares. The kind old woman who shakes her head with pity written all over her face. The teenager who tries to act like nothing's wrong but can't finish what he was saying. And then there's my daughter, suddenly bursting into laughter that seems senseless, laughter that won't stop. So my son looks at me, asking with his eyes: make her stop! Or she starts kicking her legs back and forth, or she screams.
It's easier said than done.
So you make excuses. You decide not to go out, not to go anywhere, not to participate. You skip Mass—at least there we could go without fear!
And then someone tells you that we have to take the first step; that people will understand and behave according to how we conduct ourselves, how we manage our discomfort, our suffering—justified, understandable suffering, but still. It falls to us.
These words are a brief and limited summary of the battles I fought for years—long days, endless afternoons—and I believe thousands of other mothers and fathers fought alongside me.
This is why I wanted to write about it. To explain that things are much better now, because I slowly won a fight that seemed impossible. I was tired of watching the excessive deference our friends and family showed to our pain.
One day, at a party for cousins, my daughter wasn't invited—as had happened before—out of respect, out of sensitivity.
That afternoon I cried like a woman broken. I felt rejected and different from everyone else as rarely before in my life. And I dragged my whole family down with me: disabled, all of us, because of her disability.
After that long cry, I felt emptied of everything, lost, alone. But that evening, I made a decision. F.'s birthday was coming soon. We would throw her a big party ourselves, inviting everyone—cousins, friends, all of them. From that wonderful party, you could say our entire attitude changed. My heart, which had been tight and hard and turned to stone, opened to the "others" I had feared so much. And from that day on, they became my greatest, most wonderful friends, my supporters: people who invited us to their homes, who taught their children to respect and love F. as they would any normal child, who invited us to spend our vacation with them. And so a chain formed. My husband and I grew braver step by step. But what matters most is that we discovered how much love, how much friendship F. sparked around her and around all of us.
This is why I wanted to tell this story—my own experience, but one that might help other mothers and fathers who still carry so much fear of others.
- Mariangela, 1974