I am the father of three wonderful children. Matteo, nine, our firstborn, the "prince" of the house—the one who changed our marriage forever and whom we raised with perhaps obsessive care. Then Simone arrived. He's six now, and he has a rare genetic syndrome—an extra piece of chromosome 15—and our life changed completely.
Then came Francesca, three, our whirlwind—a child we wanted partly to give Matteo a sibling, someone to share the burden of Simone's care in the future. But now we love her without limit: a girl with no rules, a third child, bright and sharp because she is a girl, because we have Simone and his challenges and we are overwhelmed, and somehow she understands all of it and winds us around her little finger.
Simone has severe intellectual disability. He doesn't speak or communicate. His capacity for independence is minimal. He can't feed himself (though at preschool, where he's less indulged, sometimes he does). He wears diapers. He doesn't talk, doesn't point, shows almost no emotion except through tears. Living every day with a child who needs constant care, with whom there is virtually no relationship, and for whom my wife especially bears an enormous physical and psychological burden—a burden that strains our marriage in ways only those who have lived through it can understand.
When I was asked to write about myself as Simone's father, I remembered those days five years ago, right after his diagnosis, when I spent hours on the internet and in books trying to understand what would happen to him, to our family, to me as a father. I read about extraordinary fathers who live their child's disability as a gift, a blessing—men who seemed always cheerful, strong, determined, practically perfect.
Knowing that eighty percent of marriages with a disabled child end in abandonment by the father, I tried hard to become one of those fathers and save our marriage. I think—I hope—I've managed.
I learned the hard way (my wife is still learning, and her career has suffered for it) that if you don't smile, if you don't seem like the happiest person in the world, if your child's disability is anything less than just another curious thing life has handed you, people leave you alone. Because no one cares about your problems, really. At best they pity you, but they're ready to turn their backs. And your other children get pushed aside too. That's devastating for a parent.
Over these years I've tried to build—and I will keep building—whatever I can to give Simone a dignified future. But most of all, I've fought to keep our family together, to help my other two children grow up with the wealth of loving someone in difficulty at home, to give them the same opportunities as their friends.
We're all involved in the disability organizations we belong to. We take vacations and share special moments with other families. But we also bring Simone to his siblings' activities when we can, so we're all together as one family.
But there is another side
The hidden side—the one no one sees and no one should have to imagine. It's the silent tears of a father who walks Simone to school with joy, hand in hand (it took years of therapy to get here, because of his developmental delay), knowing that when he drops him in the classroom, his son won't say goodbye. There will be no kiss, no smile. It's the tears of a father who would give anything to take his whole family out for pizza, or to go for a bike ride together.
It's the knowledge that the natural order of life doesn't exist for us. When our children grow up, my wife and I won't have the peace of old age. We'll always have a child to care for. It's the struggle to accept that we've had to surrender our own dreams—both individual and shared—and that we can never truly step away, not even for a moment of peace. It's the fear that one day I won't have the physical strength to manage a young man with severe intellectual disability. It's the constant need to stay vigilant—a few seconds of inattention, and something irreparable could happen. It's the exhaustion of fighting prejudice, battling daily for disability rights, watching cuts to services and support teachers. The list never ends.
It's the deep pain of not being able to answer the questions posed for this article: "How do you feel your son feels? What have you recognized in him? What do you enjoy doing together? What would you like to do with him? What do you dream for him? What autonomy is possible? How have you helped him grow? Are you proud of him? What amazes you in your son?" Simply because I have no answers. Simone has severe intellectual disability. I don't know his emotions, his thoughts, his desires. The only question I've ever asked myself is whether Simone is aware of his difference, whether he suffers for it, or whether he's happy in his simplicity. As his father, he seems happy to me. That's enough. It lightens—but doesn't erase—the pain of everything else.
I wanted to write these words on an almost-autumn July afternoon so that readers patient enough to reach the end of this piece will remember: if you ever meet a family with a disabled child, and if those parents seem reasonably happy, open, and kind, don't forget that they have a hidden side too. They've just learned to hide it deep in their hearts where no one will ever see it.
Lorenzo Cerutti, 2014
