You can't understand it unless you've lived it," a mother told me, speaking of the unbridgeable emptiness left by her severely disabled child, who died at twelve.
You can't understand it—people say this of every sorrow on earth. You have to walk that same road to enter the mystery of grief. But when the person who leaves you is someone (a child, young person, or adult) who seems in most people's eyes to be nothing but a burden on the family, seems like a mistake of nature, a defeat of medicine, someone who appears to lack the capacity to enjoy life, a disappointment to parents and siblings...
Then, at the moment of death, there is a hushed whisper, a hidden thought among relatives and acquaintances: "Isn't it better this way, for him and for them? He's stopped suffering and causing suffering... now he's at peace!"
There steals in, sometimes, the question some want to ask the parents: "But do you really grieve for his death? Don't you feel freed from a weight that was crushing you?"
This is why those who haven't lived it cannot understand—and should remain silent, even within themselves.
I have known many children and young people with severe disabilities. Some never spoke, never walked. Others had behavior that was difficult to understand. Their lives seemed like a non-life to them and to their parents, constrained by love for their child to an existence of hardship, sacrifice, and loss; tormented by endless hope: "He'll change, he'll grow, he'll heal..."
They left before their time—often quietly, sometimes suddenly.
Speaking with their parents, I am struck by something that runs through so many of them: this child, apparently so different, so difficult, left behind a void that is unbridgeable and unspeakable. He passed through their marriage and family like a cyclone. Yet he was and remains a "teacher of life." Almost every parent I have spoken with learned to distinguish what is essential from what is peripheral; to give proper weight to things and circumstances; to hold at little value certain needs and desires that seem vitally important to most. Everything takes on new meaning in the light of that child's presence—or absence. "It's as if he were always here, with us." "He showed us the way; we cannot turn back." And those who had devoted themselves, because of his needs, to helping disabled people, now that "he is gone," feel driven to do more. The commitment becomes a mission. "But after all these years, how is it you still feel called to continue on this difficult path, to spend your few vacations with them?" I asked a mother whose life was hardly free of obligations. "How can you forget? He and what he taught us—it's too great, too mysterious."
Someone might say: "But you see, they do this to try to fill the emptiness their children left. It's a way to console themselves for the loss."
Perhaps because for about twenty years I have tried to live out the great teaching my daughter left us when she died, I don't believe that's the reason. Not to fill the void, not to seek consolation.
I believe—and I thank the Lord every day for this—that truly their presence in our families had a meaning far deeper: through their lives, so poor in our eyes, they mysteriously "filled infinite spaces."
It is for us to prove worthy of moving in those spaces.
- Mariangela Bertolini, 1997