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Parents Struggle To Cope With Son's Dual Conditions
By Michael McLeod
December 20, 2001
It is easy for Mary Diaz to describe the place her son holds in her life.
"El es mi respiro," she says. "He is the air that I breathe."
If only it were all that simple.
Edwin is 9. He has Down syndrome, a disorder that limits his mental development but does nothing to curb either his love for his parents or theirs for him.
Mary Diaz remembers one night years ago, when she and her husband, Gabriel, were lying in bed with Edwin asleep between them. They were still living in Comerio, Puerto Rico, a small town in the mountains that run across the center of the island. Mary had not had prenatal genetic testing, so Edwin's disorder had taken them by surprise. So had the depth of their love for him.
Speaking softly to each other that night, with Edwin breathing evenly between them, she and her husband agreed they were happy that they had not known about the Down syndrome beforehand.
"God is very clever," Mary Diaz said. "He had to find a way to give us this gift."
The Diaz family will have a lean but happy Christmas this year. Mary Diaz says they are grateful that life is better here than it was in Puerto Rico, where job opportunities were scarce.
When they moved here a year ago, Gabriel found work as a truck driver, and although he doesn't make much money, the family can afford a modest home in southeast Orlando, with orange trees in the back yard and a basketball hoop for Edwin out front.
But in April, when they were still trying to settle into the rhythm of their new life, Mary Diaz got a phone call from Edwin's doctor.
"Mommy, we have a problem," the doctor said.
Edwin had been diagnosed with leukemia, a disease that disproportionately afflicts children with Down syndrome. Medicaid covers the cost of his treatment, and the cure rate for his type of the disease is extremely high. But the ordeal of coping with chemotherapy, pills, diet restrictions, hospital stays and their worries about Edwin's future has been particularly hard on the couple.
The real problem is communication. Gabriel Diaz's English is limited. Mary Diaz does not speak it at all. Between them, they have so many questions about Edwin, questions made more complicated by his condition, by their concern about his physical and mental well-being, and by they fact that they are living in an area that is still foreign to them.
"I have to be strong," Gabriel Diaz says. But in spite of the efforts of bilingual doctors, nurses and social workers, the day-to-day realities of taking care of Edwin are often overwhelming to the couple, particularly to the boy's mother.
It's several months into his course of treatment, and Edwin is doing well. He is being treated on an outpatient basis, with occasional hospital visits. He goes to classes in a mainstream school every day.
By the time he comes home, Mary Diaz is often in a panic.
She meets him at the door, wanting to know if he is in any pain, if he ate his lunch, if he feels well. He only smiles. Edwin's ability to communicate verbally is so limited that he can't answer her questions. Sometimes she breaks down crying. He takes her head in his hands and says, "No, mommy. No cry."
What the family really needs is a baby sitter, says Elizabeth Shingleton, a social worker at the Leukemia and Lymphoma Society. The right person could help the couple understand what they can do to help their son in the short term and the long term, she said. Just as importantly, it would give them the simple pleasure of time together, alone -- something that parents of special-needs children desperately need.
But like everything with Edwin, it's not that simple. The person would have to speak Spanish and have some medical training because of Edwin's dual conditions.
"There are a lot of resources out there, both for Down syndrome and children with leukemia," Shingleton says. "But this is one of those areas that just falls in between the cracks."
In spite of their worries, Gabriel and Mary Diaz are grateful for what they have. Once again they find themselves marveling at how things worked out:
"It is so good," Gabriel Diaz says, "that this happened here in the U.S., where we know he is getting such wonderful care."
Edwin is running through the house with a small mirror held up to his face -- one of his little diversions. Anything that moves quickly seems to intrigue him -- video games, balls of all shapes and sizes. Mary, with the insight only a mother can divine, has come to realize that he uses the mirror in much the same way, watching it closely and flipping it back and forth to make images dart and blur.
She and her husband watch their son, smiling. Gabriel is fixing lasagna. They both still have their country hospitality in them. It's impossible to visit their home without having both of them urge you, with equal amounts of courtesy and persistence, to stay for a meal, no matter the time of day.
Apart from the sound of traffic outside their door, they might still be in the mountains in the country, among people who call themselves La mancha de platano: stained by the plantain trees that sway in island breezes from coast to coast.
Now they are in Orlando, and life is not as simple as they might have hoped, but Mary Diaz can still smile, looking at Edwin, and say: "I am a very happy mother."
All administrative costs for Sentinel Santa are paid for by the Orlando Sentinel and the McCormick Tribune Foundation. The foundation contributes 50 cents for every $1 donated. Michael McLeod can be reached at email@example.com or 407-420-5432.