Debbie Braga's 31-year-old brother David couldn't
make it. He has all sorts of health problems and rarely leaves Seven
Hills Pediatric Center in Groton, where he has lived since he was
11 years old.
"We had him home for Father's Day, and it was
a good day," Ed Braga said. He was sitting at the kitchen table
and Margaret sat next to him and she nodded and agreed it was a
good day.
They don't know how many more good days their David
will have. They just found out the state wants to move David and
30 other people out of Seven Hills to a smaller facility.
This is the result of a lawsuit that has nothing
to do with the Bragas and other families who know only that their
children have survived and thrived at Seven Hills, long after some
experts said their kids would die in childhood.
Nobody from the state, nobody with a medical degree,
has bothered to sit down with the Bragas or any of the other families
and ask them if they thought moving the people out of Seven Hills
is a good idea.
Last week, at the annual Seven Hills family picnic,
Ed Braga pulled aside some doctors from Children's Hospital, the
hospital that got Seven Hills up and running in the first place,
and asked them whether they thought it was a good idea.
"They think the same thing we think,"
Braga said. "They think this is a really bad idea. They think
this will really threaten David's health and the health of the others."
Margaret Braga remembers bringing David home for
the first time, seven months after he was born, thinking she could
love her little boy back to health. But the oxygen didn't reach
his brain soon enough, so he was mentally retarded. He had cystic
fibrosis. He was a quadriplegic. His digestive system was a mess.
His respiratory system was a mess.
Margaret would lie awake at night, listening to
her son gasp for air, unable to sleep because she thought she had
just heard David take his last breath. As David got older and heavier,
they would struggle, carrying him up those steep front stairs.
"I was like every mother with a seriously disabled
child," Margaret said. "I thought just my being a good
mother would heal him, but it didn't."
Seven Hills saved more than David's life. It saved
his parents and his five siblings, all of whom had been devoted
to caring for him and keeping him in the family home.
And now, just like that, someone who has never met
the Bragas, never spoken to them, never sat at the kitchen table,
listening to the stories, the love, the pain of putting David there
in the first place, the doubt, the reluctant realization that it
was the right thing to do, has all the power. Somebody who knows
none of this, who has never seen the photograph of David in a tuxedo
at his sister's wedding six years ago that sits on the bureau just
inside the front door, this somebody says they know what's best
for David Braga.
"Don't we have the right to say no?" Margaret
asked. "Don't we have the right to say, 'If you move David
and these other people out of Seven Hills you're going to hurt them,
maybe kill them?' "
Debbie Braga scoffed.
"The state says they're going to move my brother
into a community setting," she said. "He's already in
a community. They don't know or care about that community."
Ed Braga looked out the window. The guests would
be arriving soon and he had to get the food out and had to be a
good host even as he harbored a bad feeling.
"They're gonna kill him," Ed Braga said,
standing up. "If they push him out, they're gonna kill my son."
*Story Published In The Boston Globe on 6/30/2008
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