When Paola was born, I was eight years old. I remember the tension clearly, and the feeling that something had gone terribly wrong. Beyond being mongoloid, Paola was very ill, and there were fears she might not survive. I remember my mother's endless tears and my father's heavy silence. My brothers were ten and eleven at the time, so we were all still too young — even to encourage each other and face what was happening.
The people in our home — a woman who had always been with us and our grandmother — kept telling us to pray. But we didn't understand. Our mother didn't understand either. She had only ever heard about mongolism from a distance.
Fortunately, our troubles weren't as severe as they might have been. Within a few years — perhaps even after the first year — ours was the ordinary life of a family with one member in difficulty.
Our mother was good to all of us, and to Paola especially. I would be lying if I said I struggled with it during childhood, adolescence, or afterward.
Why not?
Paola has always spent time with our friends. She had such warmth and affection that even strangers would talk to her. It was hard not to.
We followed her development normally, treating her as we would any sister. We didn't think about it as a problem.
As I grew older, a sense of "protection" took hold — perhaps something I didn't feel before. Maybe it's maternal instinct; I'm not sure. But it's this desire to make people understand — everyone — that mongolism isn't contagious.
I remember a woman at a train station who tried to cut in front of Paola in the ticket line. I was furious and argued about it with my mother afterward.
She was right to say that people don't change. That's true. But why shouldn't we have the courage to defend someone who could speak for herself — who knew exactly what was happening — but no one listens to? I can't accept this passively, with my mother's resignation. She's been through so much already; she has no energy left to fight. Now I'm married. I have a son. And I wonder: what would happen if my parents were gone?
My husband, who is impatient with everything, who even said he loves our son more because he's beautiful — would he accept Paola?
I understand he can't have the sensitivity I have, the sensitivity of someone who has lived closely with these struggles. I know he would help. But that's not the issue.
I don't want Paola — or anyone — merely to be accepted. It's about AVAILABILITY. That's something else entirely.
I have problems too. How could he not? Paola is twenty-one now; I'm twenty-nine. It seems too early to worry about it. But maybe that's just how I avoid facing a problem I don't know how to solve.
M. Angela, 1980