I'm speaking to the mothers of disabled children who cannot speak: this is where my rage and pain meet. It's clear Francesca is in pain somewhere. We thought we'd found it, after ruling out so many possibilities that the tests had already eliminated. During her last hospital stay, I brought her in crying. I brought her home crying.
My husband and I pinpointed the pain (after several private specialist visits) to the left side of her face: it's her teeth. Francesca grinds them at night, and the friction irritates her gums. We've tried to fashion a kind of guard for her teeth. We thought we'd solved it. Now Francesca is crying again; she dozes off for five minutes, then suddenly her eyes go wide, she thrashes about incredibly, she moans, she cries.
I can't take it anymore. I shut her in her room, but her cries reach me anyway. I cover my ears so I won't hear her, and I weep, asking myself: "God, why? Couldn't you have given her the ability to speak so I would know how to help her?" The pediatrician doesn't understand. The emergency room doesn't understand. The neurologists who follow her tell me: "Madam, you do what you can, because if it's not an epileptic seizure, there's no point bringing her here."
I can't do this anymore. Dear friends at Ombre e Luci, after I cried so much for the children of San Giuliano, I've cried for my daughter and for the terrible time we're living through—the endless fear, the damage. We had damage here too, thank God nothing like San Giuliano's. But the November 1st tremor, centered nearby, created chaos in our home—a stone from the roof fell on the car, smashing the dashboard window and denting the body (a new car we're still paying for, bought specifically so Francesca's big wheelchair would fit; insured only against theft and fire!). Plates and glasses shattered. The cabinet fell. You have to live through it to believe it.
Serious damage across the town, two families evacuated, and so much fear. Emergency bags packed by the door. Nights in the car with a broken window. Back to Francesca: if there are other mothers who are going through or have gone through moments as difficult as mine, and if you can offer me help, guidance, advice—I welcome it. I'm not sure I've managed to convey how hard it is to identify pain in these children.
A warm embrace from all of us
Immacolata, 2002