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Where Are The Parents?
They are on the phone to doctors and hospitals and fighting with insurance
companies, wading through the red tape in order that their child's medical
needs can be properly addressed.
They are buried under a mountain of paper work and medical bills, trying to
make sense of a system that seems designed to confuse and intimidate all but
the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their
100 lbs. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or
laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are all sitting, bleary eyed and exhausted, in hospital emergency room,
waiting for test results to come back and wondering: is this the time when
my child doesn't pull through?
They are sitting patiently, in hospital rooms as their child recovers from yet another
surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours
a night, and must constantly be watched, lest he do himself, or another member of the
family, harm.
They are sitting at home with their child because family and friends are either too
intimidated or too unwilling to help with child care and the state agencies that are
designed to help are suffering cutbacks of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled children alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometimes 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.
They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might
have some sort of normal life for their children and their families.
They are busy, trying to survive.
By Sue Stuyvesant
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