A girl was born! On a hot day in April. Everything had passed: the pain of labor, the waiting for this fourth daughter dreamed of and loved, and here she was in my arms. I looked at her, studied her face, checked that everything was right. No!!! Something was wrong. She was different from my other daughters. A thought crept in at once: she's not normal. I pushed it away, terrified.
My mind went back to the birth, to those terrible hours, to the twisted faces of students and nurses who witnessed Costanza's arrival, to the cry I never heard, to the two days of waiting before they would let me see her.
The hospital doctors assured me that Costanza "is fine, she's just a very calm baby." Costanza in her crib never cried—lucky you!!!
Costanza won't eat. Costanza won't smile. Costanza can't hear. Costanza can't see. Costanza won't move. Costanza won't be touched—not even by me, her mother. Costanza is beautiful, so blonde. Her eyes don't look back at you.
My pain is as deep as my hope.
Days come, months, years in hospitals, famous neurologists searching for why, searching for hope.
A thousand different diagnoses arrive, but no help. Therapies full of promise arrive, routinely disappointed.
Nursery school arrives, my battles with the staff, with the parents of "normal" children. Elementary school arrives, charged with promises: "Costanza has the right to a support teacher, one-to-one. She has the right to a specialized assistant." These are battles for me—runs to the school district office, long waits to speak with bureaucrats and administrators. "Madam, we can't do anything. We can't change your daughter's diaper. We don't have the staff."
Costanza walks the school hallway, left to the mercy of some janitor. Costanza has feces all over her back, on her hands, for who knows how long. No one changes her. "It's not my job," they say.
I take up my pain again, control it. I must keep hoping, keep searching for something to make Costanza ALIVE—I want at least for her to be a little bit (that's enough for me) self-sufficient. I want a school for her where they'll help me teach her to eat alone, to communicate any way she can, to control her body. I am powerless. I don't know what to do anymore.
I talk, and talk, and keep talking with teachers, with workers, with therapists, with the child psychiatrist. NOTHING. "The school as a warehouse."
Costanza GETS WORSE.
Epileptic seizures arrive. Costanza is ten years old.
Costanza can't fly alone. What to do? What to hope for her? An institution where she'll be at the mercy of whoever, where she'll be what?
Costanza, defenseless as an infant.
Horrible images flash through my mind—things I've seen on television: swaying bodies, badly dressed, short hair, eyes lost in nothing, in sad, gloomy, empty rooms. NO! There has to be more than this.
Maybe imagination, maybe dreaming moves my thoughts forward: I see a green expanse of meadows with trees, water, air, sun, light.
Costanza smiles at the wind that caresses her hair, her face. Costanza reaches her hands toward a spring of water.
These are the things that, in reality, make Costanza truly alive. I saw her eyes come alive in the sea's water, her hands beating, her body and face relax.
It was beautiful to see her like that—HAPPY. I saw Costanza dance. Yes, really dance, following the breath of the wind, lifting her face to the warmth of the sun.
—Francesca Trionfi, 1996
Francesca Trionfi has been working for several years on a community project for Costanza and other young people like her.
Life with them, day after day over the years, has given me this deep conviction: it is not about leading young people down the right path that seems good to us. It is about accompanying them with creative warmth in the strange, chaotic journey that is their own. This attitude can truly lead them to a "desire to live," to "living better," and even to a certain "joy in living."—A Community Educator