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SAN GABRIEL VALLEY / COVER STORY : MOTHER MARIA'S DAILY MIRACLE : Caring for 6 Children, 3 of Them Disabled, Is a Big Task but One She Does With a Smile

August 18, 1994|LISA O'NEILL | SPECIAL TO THE TIMES

After gently bathing her two young daughters, Maria Romero lays them both on the bed they share, wraps their little bodies in fluffy towels and begins to comb out their black, shiny hair.

The 42-year-old mother of six braids the girls' hair into precise plaits, laughing while tickling Milagros, 5, and Guadalupe, 3. She's gotten this process of bathing, dressing and grooming both girls down to 30 minutes, she says with a smile.

She hoists up Milagros--the "miracle"--and straps her into a tiny wheelchair with a pink "Little Mermaid" backpack. Her younger daughter goes in an even smaller wheelchair.

In the kitchen, each girl must be fed by hand; then Maria brings out cups of milk mixed with dried baby food and carefully sets up tubes and syringes to let the liquid drip down their throats.

While his sisters are being fed, Manuel, 17, the eldest Romero child, sits in his wheelchair at the kitchen table silently playing solitaire on his computer. Maria will feed him later, laying him flat on his back, inserting a plastic tube into his mouth and monitoring the blended food, making sure it doesn't go into his lungs.

Tending to six children would be a tiring task under any circumstances, but when three of them are severely disabled, the job becomes monumental. Maria Romero wakes close to dawn each morning and doesn't get to bed until close to 11 p.m., while her husband, Jose, 39, works long hours as a truck driver.

Normally simple tasks, such as dressing and bathing children, become demanding chores when those children cannot step into pants or sit up in the tub. Feedings require scrupulous attention when a slight error could mean choking. Many times, taking a short trip has meant that Maria must hoist a 200-pound wheelchair into a van.

Yet, armed only with an elementary school education and with her abiding love for her children, Maria not only does these things, but does them cheerfully and with meticulous care.

Maria "is one of the most wonderful mothers I have ever met," said Dr. Irene Gilgoff, the children's physician. "These children all have swallowing problems. None has ever been ill. She feeds them with the most loving care. I've never met a mother quite like her. She's absolutely wonderful. She always has a smile."

Manuel, Milagros and Guadalupe are afflicted with congenital myopathy, a rare, genetic form of muscular dystrophy that confines them to wheelchairs. The Romeros' other children, Gerardo, 13, Jose Jr., 11, and Daniel, 6, are completely healthy.

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Children affected by congenital myopathies are born very weak, Gilgoff said. They are often unable to swallow or to eat effectively. The disease is not progressive, Gilgoff said; the children's disabilities will not worsen and they have a normal life expectancy. Nor is their intellect or development affected, and Manuel has proven himself a sharp student.

Manuel, who is weaker than his sisters, is especially at risk for pneumonia. Still, he has never been sick because of his parents' conscientious care, the pediatrician said.

In the living room of the family's modest three-bedroom home on Elliot Avenue in El Monte, photographs of the six Romero children line the walls. In the corner stands a glass case full of trophies, testimony to the younger boys' sports talent.

Daniel, Jose Jr. and especially Gerardo help their mother by baby-sitting or feeding their sisters. Just playing with them is enough to give Maria a break.

"It's hard sometimes but it doesn't bother me," said Gerardo, an avid baseball and football player. "We have to do our best. There's nothing else we can do."

Finances make the situation more difficult. Although the family has medical insurance through Jose's $11.30-an-hour job, his plan does not cover many expenses. Like the children's feeding tubes and syringes. The tubes cost $2 each; the syringes $5 each, Maria said. The tubes and syringes are supposed to be used once and then thrown away; Maria washes the plastic instruments out with hot water and uses them repeatedly.

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Maria and Jose often have had to deny their other children the things they want. Gerard, Jose Jr. and Daniel have asked for expensive cereals or Reeboks, but they get the cheaper brands. "Sometimes they mind," she said. "They ask, 'Why? Why?' and I tell them because it's the only thing we can afford."

Jose owns his own home and two small houses that sit on the same lot. One of Maria's six sisters lives in the front house and helps Maria take care of the children.

"It's hard but she's always happy," said the sister, Antonia Abarca. "She never gets sad."

Manuel and the girls share a room in the family's cluttered but clean house. The three boys share another room, Jose and Maria the third. On Manuel's side of the room, a Cindy Crawford poster, a Frederick's of Hollywood lingerie calendar and a poster of a white sports car are pasted to the walls. Numerous religious objects--crucifixes, rosary beads and pictures of saints--are attached to the white walls.

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