Jocelyn Rodriguez, a pretty, dark-haired 2-year-old, cannot stand. She can’t sit up without support. She hears only very loud noises. She sees only shapes and shadows. She’s fed through a tube stitched to her belly. She needs constant care and attention.
So severe are Jocelyn’s mental and physical impairments that doctors say she will never meaningfully improve. It might be enough to drive most parents or caretakers to despair.
Not Minerva Rodriguez, Jocelyn’s spirited grandmother, who adopted the little girl and has dedicated her days and nights to giving her the best possible life she can have.
For Rodriguez, who is 61, the fact that Jocelyn is alive at all, and can enjoy a certain if limited quality of life, is cause for gratitude. So are the small improvements that Rodriguez notices: Lately Jocelyn has been reaching out to black-and-white cartoons on a TV screen during therapy, feeling her special toys with her fingers, and touching her grandmother’s hair and face.
“These are a few small things, but for me they are big,’’ Rodriguez says in the kitchen of her North Miami-Dade home as Jocelyn, who is being fed milk from a small backpack equipped with an insulated bag and a pump, gurgles and appears to follow a visitor’s movements from her high chair. “You have to be positive. Never say never. This has been a test. But I have a lot of faith.’’
Rodriguez and her family nicknamed Jocelyn “Cupcake,’’ because she came out of the oven much too soon, she says with a rueful chuckle.
Jocelyn was born four months premature to an alcoholic mother, Rodriguez’s adopted daughter, who was highly intoxicated when she went into labor. Jocelyn spent the first five months of her life in an incubator at Joe DiMaggio Children’s Hospital in Hollywood, and social workers at the Voices for Children Foundation say doctors never imagined she would make it out of there.
“It’s a miracle she’s alive, and that is a fortunate thing, at least for me,’’ Rodriguez says.
Since then, Jocelyn has undergone some 10 surgeries — on her optical nerve, on her adenoids, on her bowels and stomach, the latter to curb her frequent vomiting. Because she is susceptible to respiratory and other illnesses, she has been hospitalized monthly since leaving the neo-natal unit. For a period she also suffered seizures, though those have disappeared with treatment.
Rodriguez has refused to take the easy way out, even when doctors hold out the option to do so. For instance, doctors suggested doing a tracheotomy because Jocelyn’s under-developed pulmonary system has difficulty expelling phlegm. But Rodriguez prefers to laboriously suction her lungs with a machine several times a day so that Jocelyn can breathe normally and avoid yet another puncture in her undersized body.
So far, Rodriguez has made an excellent go of caring for Jocelyn thanks to Medicaid coverage, caring doctors — including eight specialists — family help and a therapeutic day-care program where the little girl spends several days a week.
Still, it has been a physical and financial strain on Rodriguez, who lost her 71-year-old husband to cancer around the time the girl was born. Rodriguez’s second adopted daughter, Honey, lives with her and provides substantial help, working nights with American Express so she can be available to assist her mom during the afternoons after Jocelyn’s day care.
But Honey also must care for her own two kids, an 11-year old boy who is mildly autistic but functions normally, and an adopted 5-year-old girl.
Jocelyn’s mother and father, though they occasionally see the girl, don’t participate in her care because of continuing substance-abuse issues, Rodriguez says.
And the family’s combined income — Rodriguez gets a small Social Security check — is fully eaten up by household expenses and medical costs and supplies not paid for by Jocelyn’s Medicaid coverage. All her late husband, a small investor who lost everything in the Wall Street crash, left Rodriguez was her three-bedroom house.
Rodriguez has a bad back because of sciatica, as well as arthritis, so she has difficulty lifting and handling even the undersized Jocelyn, especially when it comes time to bathe her, which requires leaning painfully over a bathtub. It’s also hard for her at night, when Jocelyn wakes frequently and must be moved in her tall hospital bed, which the short Rodriguez can barely reach across.
The family has a long list of needs — “so many things, people cannot imagine it,’’ Rodriguez says with a sigh. That includes help purchasing basic supplies for Jocelyn, including diapers, feeding tubes, gauze and bandages. To make sure Jocelyn is getting enough oxygen when her breathing becomes impaired, Rodriguez wants to purchase a $500 monitor that goes on her finger.
The family would also like to replace the bathroom tub with a handicapped-accessible shower, and a lift to get Jocelyn out of bed as she grows.
Because Jocelyn also needs to be transported several times a week to therapy and medical appointments, they also wish for a properly equipped vehicle to replace their decrepit 12-year-old car that has windows that don’t go down and doors that sometimes jam.
Finally, because Jocelyn’s night-time sleep is troubled and irregular, they would like skilled after-hours help to relieve the burden on Rodriguez.
Rodriguez says doctors can’t say how long or how well Jocelyn will live, but she’s determined to give her the best care anyone could provide.
“When she was born, the doctors said she would live only hours. Now look at her. Children like this can live years. It all depends on the care,’’ Rodriguez says, quoting an old Cuban saying. “And I care for her like un gallito fino.’’