I want to tell you about these friends, but first I need to set the stage. I have been part of Fede e Luce for about twenty years, so I am an "old" friend to many young people and mothers who have grown up and even aged alongside me in the community.
For the past three years, my role within the group has shifted somewhat. I have a little girl with significant developmental delay—motor and psychological. So I find myself taking on a new part: not just as a friend, but as a mother.
Coming to terms with this has been difficult and painful. Our life and our way of seeing things—especially the future—has been turned upside down. As you can imagine, it is far different to live through such situations indirectly, even with great emotional and affective investment, than to live through them in your own skin.
It was hard to discover, over time, that my daughter, despite the optimistic (perhaps superficial) predictions of some people—family members and doctors alike—was not recovering quickly from the developmental delay diagnosed early on. And it became increasingly clear that relative to her chronological age, the gap was only widening.
We are a family (I think I can say this without vanity) and, before that, a couple (my husband and I) who tried to make ourselves available to listen to and help other families with children facing difficulties. Now we find ourselves the ones asking for help and seeking comfort to navigate this adventure that is so new and sometimes so exhausting.
And so you discover, with surprise and genuine pleasure, countless people—far removed from any religious community, with no special training, medical or spiritual—yet possessed of such spontaneous, genuine, and affectionate openness.
They are hidden in plain sight, working in all sorts of jobs: teachers, custodians, lawyers, journalists, office workers. They are people you meet by chance—parents of your children's friends, colleagues, teachers, or neighbors. Often they have never had anything to do with disabled people or their families, but they have the capacity to look beyond.
Here's to these people who don't ask themselves too many questions, who don't worry too much about how to behave "when..."; about what to look at and what not to look at, about what to say and what to try "not" to ask for fear of causing embarrassment.
Here's to this silent, hidden population who have the courage to ask you "How are you?", "How is your little girl?", "How did school go today?"—because they have the courage to listen even to curt, anguished, and awkward answers. And they seem to grasp fully the dimension of the challenge.
They are people who have the spontaneity to meet you and your daughter, to roughhouse with her if need be, and to ask or try to understand how to be with her in a way that works.
I find myself thinking back to what our "old" friends have told us—those who faced problems similar to ours, their stories and the difficulties they have had to overcome over the years. And it is comforting to think that perhaps ordinary people have changed and improved a little, and that today we are all somewhat more capable than we were before of drawing near to situations like this.
It is strange, but sometimes we have the feeling that many of those we have often encountered in the community, and who have shared with us various experiences of standing beside families facing the challenge of disability, cannot seem at times to find the spontaneity and naturalness of these "unexpected friends." Perhaps it is these latter who, even without knowing us for so long, immediately understood that our sensibility had changed and that something important and life-altering had happened in our family life. By contrast, some of our "old" friends, despite the affection that binds us—or perhaps because of it—have sometimes acted as though nothing had changed. They seemed almost held back by embarrassment, and somehow we could not feel the involvement we perhaps expected.
From them I would ask: learn from the "new" friends the virtue of spontaneity and naturalness. A question that might cause embarrassment brings more joy than silence and the pretense that everything is as it was before.
Monica, 2006