A community caring for children with severe medical conditions doesn't start out knowing what it's doing. Like any family, it learns through experience, practice, and the example of others. What frightens you at first becomes routine over time. But it takes inspiration and witnesses.
That's what happened to us with Fatima. When she arrived at our community, she was eighteen months old and came with a ventilator, suction machine, oxygen, feeding tube—the whole apparatus. As professionals, we didn't dare deviate a millimeter from the instructions of the hospital doctor overseeing her home care. Those were the days of sterile gloves for suctioning, of "everyone stop, we need to use the ambu
Then one day we were in a large shopping center doing the weekly shop. In front of a store window stood a father, a stroller, and a child in exactly Fatima's condition—ventilator hanging from the back, suction bag wedged between the wheels, a suction tube poking out of a container clipped to the handle. We were mesmerized by the organization. Everything in its place. Everything within reach. And what struck us most was how calm that father seemed. We approached him and bombarded him with questions: what did he do when the battery ran out (he carried a spare), where had he found the hooks for hanging the ventilator (he'd made them himself), and if he had to suction the child (he did it right there, no sterile gloves, no fuss). The child was smiling.
And then there were Laura's parents. Laura also had a ventilator, suction machine, oxygen, and feeding tube. They actually took her camping at the beach, along with her little brother. They talked about it as if it were the most natural thing in the world. And Marco's parents—he had a tracheostomy, suction machine, and feeding tube—every Sunday they drove him out to his grandparents' mountain cabin to see the cows. Like a king on a throne, they hauled the stroller onto the four-wheel drive. The bumps? A gift: they loosened his secretions and cleared his lungs. What a lesson in optimism.
So we started to wonder if maybe we could dare to try. And we began to live Fatima's condition and all her needs as normal, not as something extraordinary. Small steps. In safety. Small attempts. Until the things that all children do didn't seem so impossible anymore.
We took Fatima swimming—actually into the water. The realistic goal was for her to have fun, to float, to feel her feet lifting up on their own, a sensation completely different from what you experience in a bathtub. But it didn't happen by chance. We planned it. We made safety the priority. We made a list of everything we needed and divided up the tasks. And we worked with the pool manager to close it for an hour just for us and our children. The photos show a child amazed and happy.
Going to the cinema was another wonderful adventure. On the occasion of her classmate's birthday—because school, too, is a "normal" experience for Fatima—the invitation said: meet at the Cinema Bar for a snack, followed by "Kung Fu Panda." Why not go? We scouted the cinema to identify architectural obstacles and find access to electrical outlets so the ventilator wouldn't lose power. Two staff members organized the event, planning for: how to transport her, alarm volume set to minimum so as not to disturb other patrons, a flashlight to monitor her condition, suctioning before the film and during intermission so we wouldn't have to intervene during the movie, semiliquid snack to inject into her feeding tube, and so on. Fatima, mesmerized by the giant screen, never took her eyes off it. Her only complaint: we had to turn down the volume because she thought it was too loud.
Fatima's severe disability and all her medical equipment didn't stop us from ice skating on the frozen lake during Christmas vacation. The skates were on Fatima's feet, but she lay peacefully in her stroller while we skated, balancing ourselves while pushing her across the ice. For the smaller children, we invented the bob-skate: one staff member sat in a bobsled holding the child, and two others dragged them across the lake. Wonderful! The requirements aren't complicated: no herniated discs, be friends with Rachele, the lake owner, who posted a "closed" sign when we arrived with our exceptional skaters, know how to skate, and expect some bruises on the staff members' posteriors.
Trips to the cabin at Castel Orsetto have become routine. From Passo della Presolana, along a forest trail, you reach this cabin-museum where you can see photographs of forest animals, a termite mound, a wooden bear, and, if you're lucky, an eagle circling overhead. To get the stroller into the jeep, we solved the problem by leaving it at home. All we need is a deck chair to settle Fatima on the grass while the staff member carries her for the journey. You just have to keep an eye on the clock, because the ventilator has limited battery life and there's no way to plug in to electricity. Worst case—we pump with the ambu.
We don't think of ourselves as reckless. There's a common thread running through all these experiences that tells us exactly how far we can safely go: know the child and her needs well, know how to manage her equipment, keep safety high, plan rather than improvise, share the activity with at least one other person, and have the courage to dare—to feel that it can be done, without recklessness, without fear.
And to feel that despite the difference, a child is a child.
Which is, after all, our motto.
Tau-Comunità dei Bambini, Arcene BG, 2009