We take this opportunity to invite siblings of people with disabilities to write to Ombre e Luci about their pain, their struggles, their suffering—openly and without fear (you may use a pseudonym or send personal letters marked not for publication).
Agnese is my "little sister." She has Down syndrome. She's sixteen; I'm twenty-four. I have no other brothers or sisters. I devour every issue of Ombre e Luci. Often the letters and articles come from parents, and I think to myself: we siblings have something to say too.
When a child with a disability is born, everyone around that child needs support. It seems to me your magazine doesn't pay us enough attention. The focus falls on parents—and yes, they need help, their lives are turned upside down. But don't forget the siblings: restless, lost, alone...
At first it was easy
For me, in the beginning, it was easy to accept my sister. I'd waited eight years for a little sister to arrive. I wanted her, and when she was born, it was a great joy. Gradually they explained to me that she wasn't what I'd hoped for, what I'd dreamed of. I want to emphasize this: when a child with a disability is small, the social obstacles are fewer. When I read or hear that people have adopted a Down child, even two, and everyone is happy, the siblings thrilled, I think: "How wonderful!" But I worry about the future.
When the child is small, he or she goes to kindergarten with everyone else. The appearance doesn't make people uncomfortable. The gap in intellect matters less. That's how it was for us: Agnese went to regular school and was warmly welcomed by the other children (the teachers were less enthusiastic). She took dance and music lessons, went to religious instruction. She received her First Communion and Confirmation—attentive, reverent before God. Those ceremonies gave us immense joy. It was as though God had become real, tangible.
When a child with a disability is small, the social obstacles are fewer. The appearance doesn't make people uncomfortable. The gap in intellect matters less.
When a child with a disability is small, the social obstacles are fewer. The appearance doesn't make people uncomfortable. The gap in intellect matters less.But now Agnese has no proper program to welcome her forward. She goes to a center with children more severely affected than she is. She's slipped backward noticeably. She's not as appealing as she was years ago.
Not every day is "Hallelujah"
Agnese and I are bound by something indefinable, something extraordinary. She's sad when I leave; she explodes with joy when I come home. I study a hundred kilometers away and come back on weekends. I've given her all my free time, everything I had. She's given me much—I can't deny it. And yet, not every day is "Hallelujah" with her. There are the moments when I see my "friends" turn away and make jokes. When people ask if I have other siblings, and I'm afraid they'll disappear when they find out. When I see people stare as we walk by, children running to hide around the supermarket corner when we arrive (though their parents usually call them back). When we have to fight the prejudice of certain schools, certain teachers, even certain priests (yes, them too, sadly, sometimes). When I think about my future beside her.
But it certainly won't be by throwing away a child like this that we advance science and love.
I've spoken mainly about myself because I wanted to emphasize the struggles of siblings. But I can't leave out what my mother has done. If her dedication and love hadn't been so great, I wouldn't have behaved the way I have.
Agnese is a delightful woman. Everyone recognizes her kindness, her good manners. When she sees us sad or discouraged, she says: "I'll pray for you." The message of faith has reached her too.
Agnese softens the hearts of many; she unmasks pretense. Many people have come to understand the true meaning of life, of love, of self-giving through her. For me, that's a reward.
What I've written is disjointed. Forgive me. I'm not used to talking about myself and my life. I'm used to talking about Agnese with my friends, answering their curiosity and their questions. Many don't understand how we manage to live together. I hope that through my behavior—through the way I insist on treating my sister as a person, making her real to others who don't know her—I can show that barriers exist only because of smallness of spirit, and that every child has his or her own life, their own path to walk, their own purpose to fulfill, even if that road is far from smooth, far from written in advance.
A friend once told me: "Before I knew you, if I'd learned I was going to have a disabled child, I would have asked for an abortion. Now I think I would accept it."
I felt full of joy. It seemed like a gift. I knew I owed it to Agnese.
- Maria Cristina, 1989
(O. e L. n. 82)
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