When two people marry, we assume they have a certain maturity—at least the maturity that comes with age. If they are Christians, they can hope the strength of the sacrament will sustain them "for better or for worse."
But for a child, to suddenly discover one day that a brother or sister has a handicap is an ordeal beyond anything childhood can prepare you for.
You lack both the age and the maturity to face it.
You don't know what a handicap really is, even though you sense its weight in your parents' behavior.
You want to ask them what's happening, but they know very little themselves—and besides, they're consumed by caring for the sick child, so they neglect the healthy one.
At home, everything is held hostage to the problems created by the handicapped child. There's nothing else to talk about. The rest of the world ceases to exist.
The doctors keep talking about rehabilitation, always demanding more sacrifice from the family. You're struggling at school? Who knows what you're doing in the afternoon instead of studying? Right—who knows why I "choose" not to study. But when I try to explain that I spent the afternoon with my brother and couldn't focus, they ask: Is it like this all year? Not all year—all these years. Confiding in friends usually just gives them ammunition for snide remarks and smirks. Even when they have the patience to listen, they soon forget why you've become the "serious one" of the group.
I haven't seen relatives in years. It's dangerous to let them in.
The neighbors—not all of them—seem to prefer asking their "difficult" questions to the siblings rather than the parents, maybe because the parents are already armored against it.
When I don't know what to say to those questions, I've learned to ask: What would you have done in my place? It's remarkable how quickly they remember they need to get back home to finish their shopping.
Too consumed by the sick child, parents often neglect the healthy one.
Too consumed by the sick child, parents often neglect the healthy one.Who can you turn to? Priests? Now, thank God, you can find some who understand. But just a few years ago, they were telling me you couldn't "disturb Mass" with these young people. Why? Doesn't my "brother" have a soul?
The years pass. The difficulties just change shape.
Recently, at a job interview: "It's refreshing to find young people who are so prepared, so mature, so organized and capable of organizing. Your studies must have been difficult and long, yes?"
Lord, I thank you for not abandoning me. But please—remember the siblings.
by Paolo Nardini, 1985
===CORPO===