By Chuck Strouse
By Scott Fishman
By Terrence McCoy
By Ryan Yousefi
By Ciara LaVelle, Kat Bein, Carolina Del Busto, and Liz Tracy
By Pepe Billete
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By Kyle Swenson
By 1996 the family had grown to 31 and counting. They shared three adjacent houses in Kendall, but their neighbors were not pleased. The Geraldis were brought before the Miami-Dade County zoning board and told they had ten years to split the family up into houses more than 1000 feet apart.
Additionally the donations they had received through the foundation began to dwindle. Aid had peaked in the aftermath of Hurricane Andrew in 1992, but the family kept growing and resources became tight. The Geraldis decided to seek funding from the Medicaid waiver program, which pays for care in community-based settings instead of institutions. To receive the licenses, their homes had to comply with state rules six disabled residents to each adult, multiple locks on doors, exit signs in hallways and they had to file a mountain of paperwork. Today only one of the original homes in Kendall, now a state-licensed group home, is still owned by the Geraldis. Another, a private home, is a block away, and they rent two state-licensed residences in Homestead.
The highest-functioning children, however, are no longer in Miami. In 1997 the Geraldis bought a 30-acre farm in Hayesville, North Carolina, a town of 297 residents two hours from Atlanta. Costs are lower there, and Camille hoped she could develop a family business a plan for her children's adulthood. "Camille didn't want the kids bagging groceries at Publix," her husband says.
In 2000 she and two employees earned canine-training certifications. Since then, they have taught the children to perform that work for Service Dogs of America, in addition to caring for farm animals and growing food. Michael Geraldi still has his practice in Kendall, and Camille spends a week of every month with him. Like everything in their lives, the arrangement is atypical, but Camille explains it this way: "The first week I'm back in North Carolina I have to catch up with everything and I don't even notice, by the second week I start to miss him, and by the third week I'm crazy to see him again.
"I was just talking to the mother of one of his patients," she adds. "She said, öI've been going to your husband for nineteen years, and for nineteen years, he's talked about you like you're still engaged.'"
On the day of Arainia's appointment, Penny and Camille wait in the emergency room for three hours. Camille saves the baby's dirty diapers for the doctor to see that her body is simply not digesting food anymore regardless of how calories are delivered. Finally they are admitted into a room in back. Camille lays Arainia carefully on an adult-size bed. She has dressed her in a pink velour frock embroidered with little berries, pink socks with scalloped edges, and tiny knit booties. For hospice babies, Camille never reuses clothes, purchasing each child his or her own wardrobe.
Two student nurses enter the room. Camille delivers a quick lecture of the signs that indicate neurological impairment. "You as nurses have to catch this, because many times the doctors will not," she tells them. "Sometimes these babies go home and they don't catch the problem until their one-month examination." Because she is tense and tired, Camille talks even more than she normally does. If she stops, she says, "I'll fall asleep."
When the doctor arrives, Camille explains the situation. She hands him a thick manila envelope full of Arainia's medical records and DNR forms. He looks through the records and examines the baby. She is not dehydrated, he says, so the bottle, for now, is enough. He will not force a feeding tube to prolong the child's life.
"If this is what the parents want," he says, "I agree with you that this is the right decision."
Camille is relieved. "Anybody who disagrees can come to my house and see what they're like at eighteen," she says.
Outside Baptist Hospital, in a late-afternoon parking lot that has become packed as people visit loved ones for the weekend, Camille must call Arainia's biological mother to let her know the outcome of the doctor's consultation. After four hours in the hospital, she looks exhausted. She opens the back door of Penny's silver SUV and places the baby in the car seat.
"Emotionally this really wore me out today," she sighs, looking genuinely sad. "This is pretty tense for me too. I just think it's the humane thing to do." Her face says these are decisions she hates to make.
She gathers herself and dials Arainia's mother. She tells her the doctor supported her decision not to employ a feeding tube.
"He will do absolutely nothing as long as that's what you want."
She leans into the car and adjusts the baby's socks as she listens to the mother's response.
"He said the only thing for me is to make sure that the family would not come back and sue me, and I told him that you were certain about this. He said that it's your decision, and the baby is not in pain. He said her condition is not acute, and she is not dehydrated. She does not feel hunger. She does not feel satisfaction. So are you sure?"