Perhaps our story will help other new parents—discouraged, disappointed as they stand over their child's cradle.
An article for Ombre e Luci? Yes, of course. Our son Saverio is three and a half years old, and he has Down syndrome. The next issue will focus on this condition. Yes, certainly. But what do we say? How do we say it? Why say it at all?
What do we say? We cannot say everything—perhaps out of respect for human dignity. But also for the sake of other parents, and above all for Saverio's own sake.
How do we say it? We don't all speak the same language or carry the same experience. We understood this clearly once we entered that separate world of parents raising disabled children. This is why we must also respect parents living through extreme pain, who may not understand how we can speak of our joy.
Why say it? Because perhaps our testimony will help other new parents—those discouraged, disappointed as they gaze down at their child's cradle.
When Saverio was about a month old, I remember calling the mother of a three-year-old boy with Down syndrome. I didn't know her at all; my sister had mentioned her. I still hear her words in my ears: "You know, for us now, Luigi is not our biggest problem!"
So it was possible to have a child like this and it not be the family's greatest burden? It seemed impossible. That simple sentence did me tremendous good.
For us, those first months were a time of shadows; the light came gradually.
The first shadow came when my husband rushed into my hospital room the day after Saverio was born. His face was gray. He had just left a doctor's office—a man who lacked all psychological sensitivity. Suddenly he said: "He won't go to school like the others."
But Saverio will go to school like the others! He's enrolled in our neighborhood kindergarten, which he'll begin attending at four, just as our other children did.
Still in the hospital, the next day, another doctor came to see us—one who knew us personally. He explained to my husband about this condition and all the things we can now do with children like Saverio.
The light was already there, brought by others. I could see it on my husband's face even before he told me about this providential visit.
We decided to take the risk
My second shadow was the terror that I would have an ugly child. How petty and small that fear seems to me now, looking back! But I had always been drawn to beautiful things—to beauty itself, and especially to beautiful children. And Saverio was the loveliest newborn I had ever seen (and I had seen many; I come from a large family: forty-three grandchildren and four children of my own). But I was convinced he would grow hideously ugly, and that I would never be able to love him the way I loved the others. Well, he may not be the most beautiful, but he's quite lovely nonetheless. And I've met so many children like him, and I find them delightful. In this too, I was helped greatly by a doctor—an assistant to Professor Lejeune—who told me: "You'll see, once he becomes more alert, with bright, smiling eyes, how lovely he'll be." And it's true.
The third shadow I remember from that time was the fear that his brothers and sisters would be traumatized. Above all, we didn't want them to confine him to some model they had already encountered or heard about—something they were afraid of. In reality, I think I was projecting my own fear onto them.
We wanted them to discover Saverio gradually, to love him or reject him, but without any preconceived judgment. So we decided to take the risk. We said nothing (they were ten, eight, and two at the time) and waited for their questions as they discovered their little brother. It was a risk: we lived in a small town, and they could have learned something harsh from a schoolmate. But we had talked with friends, and they were all wonderfully understanding and discreet.
After a year, the questions came: "Why doesn't he walk yet?" "He doesn't have many teeth!" Especially when they compared him to other children his age, their eyes opened gradually—and peacefully, because they already loved him by then, and we were stronger. The shadow became light in this case too. The two older ones are godparents, and their love is strong and solid.
When Saverio turned eighteen months, I realized my love alone was no longer enough to reach him. I needed to learn gestures and a language I couldn't discover with him on my own.
I searched everywhere, read what I could, but I lacked lived example. Finally I found the person I was looking for.
I had heard about an educator who worked with children like Saverio. At first I only wanted to ask her for some advice. Then, after she had spent an hour with him and from the very first moment, I saw that between her and my little boy there was a connection so strong that we decided to bring him to her every week. It's impossible to measure or express how much she has given us and continues to give us. It's through her that I came to know Fede e Luce, and now I have the joy of seeing a community take root here in our city.
I want to close with something my oldest son said recently: "Mom, it's amazing—since Saverio was born, you do so many more things than before!" And here I was, in the shadow of those early days, convinced I would be chained to the house, raising a child "not like the others."
I also know that with Saverio we live in the shadow of the cross, and that this shadow keeps us from being blinded. It allows us to see those who are fixed to that cross with the One who showed us such tenderness in our trial. Doesn't He already reveal His resurrection to us through the help we have received and the people we have met because of Saverio?
(From Ombres et Lumière, no. 50)