It's always difficult for me to introduce myself, but I'll put it simply: I'm the mother of Paolo and Chiara.
Paolo is twenty-five years old, and Chiara will be four next December. Both have Down syndrome.
Many readers will find this surprising—the same condition in the same family twice. Yes, it happened twice, and it was our choice. Let me explain. I'll start with Paolo, who is now a man. When Paolo was born, I was twenty-three. I was prepared for almost anything except this—especially since I barely knew such a thing existed.
Paolo has given me so much. He taught me to find joy in small things.
Beyond my own inexperience, I remember how little the doctors themselves knew. Aside from the few scraps they had, there was nothing else.
Paolo has given me so much. He taught me to find joy in small things.I cannot forget even now the despair and fear—my fear that I would not be able to handle such a grave problem, especially when the diagnoses offered little hope each time.
So many people told me he was a child who would give me little in return—perhaps because the doctors themselves had so little experience back then. But after those first desperate years, a great strength grew in me that allowed me to hope.
Paolo, meanwhile, was growing. Despite his many difficulties, and contrary to what they'd diagnosed at the start, he began to give me real satisfaction. In those days, no one spoke of physical therapy, psychomotor development, speech therapy—all the things we're offered now. Still, at five he started preschool. I remember vividly how traumatic it was for me to leave him—the first time he'd been trusted to someone else's care—and how much less traumatic it was for him. He settled in quickly, without all the careful measures we use today. At seven, he was placed in a special school (mainstream inclusion wasn't yet the practice), and he stayed there for ten years.
Chiara waited in the hospital for someone to care for her... Now she's almost four, and she is our joy.
He learned to read, to write, to do simple arithmetic. He finished elementary school.
Chiara waited in the hospital for someone to care for her... Now she's almost four, and she is our joy.He spent a few years learning printing and then continued his education in a preparatory course at a center far from home. Beyond the training itself, it made him independent—he learned to use public transportation and to feel like an adult. You can imagine my worry facing these new experiences. But for his sake, I found the strength to let him try, and he surprised me with his enthusiasm.
Then came the chance for real work. Paolo threw himself into it, and he handled the situation far better than I ever would have imagined.
He's been working for six years now, and he's always very happy.
Looking back, those terrible diagnoses the doctors gave—maybe they weren't so accurate after all. But they served a purpose: they prepared me not to expect anything.
Paolo, instead, has given me so much and keeps giving. He taught me to be content, the way he always is, even with small things.
You might ask: "What did you feel when Chiara arrived?"
Joy. That was our choice—Paolo's and mine. Our life had grown too empty. Paolo was grown and hardly needed us the way he once did. Then we learned that a little girl was waiting in the hospital for someone to take care of her.
That was exactly what we wanted.
Chiara was three and a half months old when she joined our family on Easter Sunday, 1985. Now she's almost four, and she is our joy. Our family is complete: Paolo has felt more grown-up and has taken responsibility for his sister. Carlo and I have realized a dream we shared, though we can't deny that we move between moments of joy and satisfaction and long stretches of worry and fear. Chiara has found so much love, and for us she is a source of strength and the will to live.
Sometimes I think back to Paolo's first years—the tears, the despair—and I compare them to what we're living now. It was pointless to despair. We only needed to wait. Drawing on that earlier experience, I have to say that some of my peace of mind comes from the satisfaction Paolo has given me, and from the fact that we now have doctors who are better trained and support from public services (SIMEE) that didn't exist back then.
Chiara, for example, after her first month with us—a time for adjustment—began physical therapy, sometimes several sessions a week, guided with great care and skill by a team that attended to both her needs and mine. She took swimming classes and, still guided by the same team, now does psychomotor development work because that's what's needed right now. Last year, not yet three, she was enrolled in preschool, where she's followed with such attention and such love. I know I haven't said much that's new, especially for those with children Paolo's age. But I want to give real hope to parents of young children like Chiara. There is so much to do, and it's essential never to give up in the face of all the difficulties you'll meet. Because beyond it being every parent's duty, the reward our children give us is immense.
- Irma Fomari, 1988