We talk about "them"—how much time they take from us, how much care they need, how much love we pour into them. But while we spend years shuttling our children to therapy, managing crisis after crisis, chasing specialists in search of answers to each new problem, where are the brothers and sisters? Where do they fit as our disabled child grows?
Are they standing in a corner, listening and enduring? What do they think? What do they feel?
Whether older or younger, they are inevitably neglected—left with a grandmother, dropped at a friend's house, handed off to an aunt or uncle.
How many times have I stood at a crossroads, weighing what needed doing first, only to realize the answer was always the same: I had to take care of Stefano. For years, everything revolved around him. Our days belonged to him. And when we tried to do something the other one wanted, we still had to work around Stefano's schedule, his anxiety, his clumsiness.
They certainly don't have an easy life.
They certainly don't have an easy life.
The brothers and sisters of children with disabilities don't have an easy childhood—or an easy life in any phase that follows. They grow up fast, many of them learning to care for their sibling before they should. Some withdraw into themselves and look elsewhere for what they believe the family won't give them. In a way, they too are "different." Perhaps we all feel different when we touch, every day, the despair of it—the sting of isolation, the fear of how the world looks at our children with pity in its eyes.
We've all found ourselves on the street, watched by curious strangers amused or confused by our child's unusual words and awkward gestures. More than once, rage has seized us. To defend ourselves, we've summoned every bit of contempt we could muster. And often our siblings have witnessed these moments. That's when they react—with fury, meeting those stares and intrusive questions head-on.
How much anger do they carry inside? Perhaps it holds all the rage we parents felt in those early days, when our world collapsed. They listened to our grief in silence and grew up under that shadow, crushed by it, feeling helpless—guilty for not being able to help, guilty often for simply existing. They absorbed every feeling we had. They became a concentration of it, an explosion of contradictions born from their strange position in the family.
Probably they will become extraordinary people.
Probably they will become extraordinary people.
They are probably our worst and best selves combined, and as they grow, they will become remarkable human beings. They won't always have the strength to support us, their parents. But they will almost certainly develop the capacity and skill to stand beside other people they meet in their lives. Everything they've learned—the good and the painful—has marked them deeply. They mature slowly, struggling to find a model of manhood to follow, especially when their older brother, the other man in the tight family circle, has his own problems. It takes them years to settle into themselves, to find a way of being that fits who they are. They will clash a thousand times with peers who laugh at difference.
They will have the capacity to stand beside the people they encounter.
They will have the capacity to stand beside the people they encounter.
Sometimes I ask myself: what is their guilt? They found themselves in this strange dimension through no choice of their own, simply because we decided to bring them into the world. Then I want to shout all my love to them—it is so large, so vast—but it sits there, suffocating inside me. I can't communicate it because it seems obvious, "normal."
We parents of children with disabilities often can't reach our healthy children in the same way. We're grateful they're well, and we thank God for giving us at least one child without problems. We don't give them the same attention because we know they can manage on their own, that they don't always need us. So we forget how fragile they are, how sensitive. We forget how much they matter.
They are our bridge to the outside world. They are the mirror of our unfulfilled dreams. They are our window to the future. We notice how important they are when they become a source of strength for their struggling sibling. Everyone expects so much from them. We count on them because they "can do anything." But then comes a day when we look at them in wonder—they've grown up without our constant help. They are the ones, with all their fragility, who open themselves to the world differently than we do, with all the generosity they learned in the hard course of their lives.
