Where Are the Parents?

[Guest guest]

This has been around for years, but now seems like a good time to recycle it!

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Where Are the Parents?

By Sue Stuyvesant

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 paperwork 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 lb. 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 sitting, bleary eyed and exhausted, in hospital emergency

rooms, waiting for tests results to come back and wondering: is this the

time when my child doesn't pull through? The 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 cut backs of there 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 child alive. They are struggling to keep a marriage

together, because adversity does not always bring you closer. They are

working 2 and sometime 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.

Where are the parents?

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.

Where are the parents?

They are busy, trying to survive.

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