Appears in my post bofx every few months
" In 1996, a parent named Sue Stuyvesant penned an essay entitled "Where Are The Parents?" After a school official complained that there were too few parents of children with disabilities involved with the local PTA.
This powerful essay is included here in its entirety, for its message should not be missed.
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 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 edications, 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?
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 cut backs 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 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.
They are busy, trying to survive."
By Sue Stuyves