A Call to Parents
I'm the youngest of three children. Roby, the oldest, is 39 and brain-damaged.
My family and my entire life has revolved around Roby—though I've only come to understand this recently.
It was normal to alternate Sundays with my sister, taking turns so our parents wouldn't be alone with him. Normal to join Faith and Light (so I wouldn't be alone with him either). It seemed obvious that I'd become a caregiver for the handicapped. Natural that I'd look for work at a school for disabled children.
Today I realize that my past and future—and yours—were managed and mortgaged selfishly by our parents.
I love Roby. He's an angel who asks only for smiling faces. I love him. I suffer terribly for what he will never know, never do, for being forced to let others decide his rights. And it was unjust—what my parents, what your parents did—to plan only for their disabled child while ignoring the future of their healthy ones.
When parents discover they have such a special child, they despair first, then love too much, and hypocritically—without malice—they think: "He'll be happy as long as I'm here, and then..." But then what? Can they really promise how long they'll be able to care for him? They make this commitment knowing full well, and they must honor it—with our help. But it is their commitment, not ours.
When they can no longer provide for the child, then the teenager, then the man, the healthy child steps in to care for both parents and the disabled sibling, then for the sibling alone—as if this healthy child were born with this task already assigned.
The healthy child grows up, each day inheriting this future duty. He doesn't dare rebel, because he'd have to fight himself, and he knows he'd lose love and the will to live.
When does the healthy child start living his own life?
When will his choices be about his own good first, and his family's second?
What happens when a parent dies suddenly, without providing—not even in words (because it was always understood you would handle it), and certainly not in action (by asking about institutions, setting aside money for his future)—and you find yourself deciding what to do?
You don't want Roby to suffer, because he knows only life at home, and no institution seems remotely acceptable or capable of sparing him the tragedy of separation from us.
You want to give yourself to your own children, to give them all your time, because you know from experience that you can't go back. Every moment with them is irreplaceable.
Your husband thought he understood when he married you how important Roby is to you, how much his presence would affect your life together. But not this much.
You felt a stone drop in your chest when the family court judge said: "You are responsible and irreplaceable for him. Make the right choices."
What would my life have been like? Roby's? Our parents'—would Dad have died less tormented—if Roby had grown up in a group home, in an institution? Probably he wouldn't suffer so many traumas now. And I wouldn't be launching this appeal to other parents.
Eleonora
In the Hospital Too
I've been a devoted reader of your magazine for years. In the hospital, doctors and nurses read it; people waiting in clinics for specialist appointments read it as well.
All good wishes to you.
Sister Cristiana Dei Pra
Thank you, Sister Cristiana, for your words and your solidarity. We hope that more people like you will bring Shadows and Light to hospital corridors, waiting rooms, and anywhere there's a moment for rest and reflection.
Where Is Friendship?
I'm anonymous, but I'm a reader of yours.
I found your little magazine very interesting and especially very meaningful.
For several months now, I've been part of a Faith and Light group in my town. I fit in well with this group, and I've made several friends I didn't have before.
My group meets once a month, but I wish we could meet twice.
Friendship means everything to me.
I have many friends, but sometimes they forget me, and that hurts.
I want to tell those friends who have left, or are about to—please stop in time if you want to save the friendship between us. Because we always need a word of comfort. If we abandon this friendship, what will be left of us? A true friend never leaves you, even when you're struggling, because we are all brothers and sisters.
A Reader
I Found the Joy of Living Again
We publish here as a letter part of a longer piece written as a story that tells of a lived experience.
I walked without direction, late into the night, pedaling hard. My face was wet with sweat. I saw a small path and walked about two kilometers. I saw a tiny light, like a candle flame, and I—pale, broken, in pain—drew near.
A gate opened. A sweet, beautiful face appeared and asked: "And what brings you here, dear child, at this hour?" I answered: "I've been pedaling, hoping to find some peace and quiet." I embrace you, Mother Mary, for giving me back the joy of living. A kiss from your son.
Domenico
P.S.: Now I understand perfectly that whoever abandoned me has no heart, and that those with a heart save a broken child and friend.
My Stories
...Disabled myself...but still in the fight: I was a tireless worker and I want to die with my boots on. My story is long... I'm not complaining. I just hope I don't get worse, so I won't be a burden. Many turn to me... If I were a millionaire, or just well enough to wash the feet of disabled people like me! I was denied support because I reason well. Have you ever seen a glass of water brought to someone's lips "by reason alone?"
I do what I can, however I can. For years I've done a kind of volunteer work by mail and now by phone, because some people can't write.
I have a collection of short stories. I'd like to have them published and give the proceeds and author's rights to a Cooperative for disabled people that started in Acri. Do you know a publisher willing to do this? As soon as I can, I'll send you my widow's mite. I've been a widow since 1994. Please forgive my writing. I'm tired. I can't correct and recopy.
Assunta Gallipoli Capalbo
We hope some readers are interested in her stories. We might be able to publish some of them—that would be one way to get them in front of many people. Please send them if you'd like.
DOCUMENTATION
The 26th volume of the "Italian Bibliography on Hearing, Vision, and Language Disorders," 1997, edited by the Pedagogical Counseling Service of Trento, has been published. By S. Ligati, pp. 128, L. 20,000. The volume contains 634 bibliographic entries (books, articles, Italian and foreign journals) on these subjects and others of interest to different types of disability: educational problems, mental retardation, various forms of therapy, school and social integration, family, religious education, conferences, legislation, films, videocassettes, and more. The volume can be requested from the Pedagogical Counseling Service—P.O. Box 601—38100 Trento—tel. 0461/828693. Articles presented in the Italian Bibliography are available as photocopies. Books should be ordered through bookstores, and catalogs from the publishers listed can be obtained by writing to or calling the publishers.
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