"My wife and I have always managed on our own. No one has ever helped us. We never gave up, and we've been through so much. We've never written or spoken about any of this to anyone because we don't want people's pity or their curiosity."
We've Been Through So Much
Your letter arrived a few days ago, and today your magazine came with it. We are the parents of Consuelo, a four-year-old girl with Down syndrome. Not long ago, Maria Teresa from Macerata showed us Ombre e Luci and asked whether we'd be happy to receive it.
Consuelo is our only child. I won't burden you with all the difficulties we've faced—financial ones, moral ones, all of them. She had heart surgery when she was just an infant. At six months, we started rehabilitation therapy, driving every day to San Stefano Hospital in Fabriano, twenty-five kilometers from Matelica, with no help from anyone. The local health office told us Consuelo was too young to benefit from their services. Twice a year we drive to the center in Genoa for consultations and new programs. My wife and I have always done everything ourselves. No one has ever helped us. We never gave up, and we've been through so much. We've never written or spoken about any of this to anyone because we don't want people's pity or their curiosity. When disability comes into your home, it's as though something monstrous was born there. People come only to gawk. A relative once visited and saw Consuelo for the first time. Afterward, he said: "I thought it would be worse." As if he'd expected a freak. People are all false and hypocritical. When something happens to you, they say, "Well, what can you do? That's life!" But when something minor happens to them, you'd think the world had collapsed, that their life is unbearably difficult and full of problems.
As a boy, I was taught to respect everyone, no matter who they are. (...) I have never pitied or looked down on anyone. One of my brothers belonged to UNITALSI, and when he visited the sick, he took me with him. Years later, they found us again. One day they came to our house and took us—Consuelo and all—to a party, and we had no idea it was coming. It made us so happy. I think that was when we opened up a little, because after Consuelo was born, we closed ourselves off with our problems. It felt as though the world had crashed down on us.
But it's different now. Consuelo is four years old, and she's the most beautiful, kindest child in the world. She still doesn't speak well—she's only beginning to say a few words. The other day someone came to visit, and Consuelo ran right over and brought a chair for them to sit on without anyone telling her to do it. We were all amazed at her thoughtfulness.
A few days ago, on RAI Due, there was a program called Piccoli Fans, and a girl with Down syndrome read something on air. I can't tell you what we felt: joy, happiness, I don't know. To see that girl on television, watched by so many people. We need more of these appearances on TV. Not to put them on display, but as guests, like anyone else. There was also a blind girl singing. It was beautiful. People need to know that children with disabilities are alive inside. They're full—full of joy, of love, of affection. These days, so many children don't have any of that. There are children who are empty, who don't know how to play.
The other day my wife picked Consuelo up from preschool, and the teacher said to her: "Mrs. Di Virgilio, your daughter is one of the few who, before she leaves, always says goodbye and gives me a kiss." You can't imagine how good it feels to hear that. It means that the work we do for our daughter matters.
Marcello Di Virgilio
This letter deserves to be read and reflected upon. We hope that friends will share it in their communities, in schools, in religious education classes. And we hope that some mother or father of a child with Down syndrome will reach out to these parents, to encourage them, to help them feel surrounded by the sense of family that Ombre e Luci hopes to build ever wider.