Welcome, Karen!
Imagine yourself totally paralyzed just below your chin. You can move nothing but your head. And then imagine a ventilator attached to your throat to help you breathe. This is not a temporary “nuisance” condition. This is the life of Garret Frey of Cedar Rapids, Iowa.
Injured in a motor vehicle accident at
the age of four, Garret was rendered quadriplegic and ventilator-dependent for
life. After the accident, Garret was
immediately placed on artificial, mechanical breathing while his parents rushed
to the hospital. It would be months
before they would know that Garret’s paralysis and inability to breathe on his
own would be permanent.
After nearly a year in various intensive
care units and a children’s rehabilitation hospital, Garret was discharged to
his home, along with supplies which would fill the ordinary person’s
closet. Garret’s parents were trained to
care for him but as they both worked, a full-time nurse had to be with Garret,
severely depleting the medical insurance benefits. For some time, Garret remained confused and
depressed.
While others speculated about a
vegetative, non-productive existence for the child, Garret, his mother and a
Clinical Psychologist went about trying to develop the best quality of life
possible, within the permanent medical parameters. Over a period of seven years, Garret was
taught to use his brain in order to have an entirely cognitive experience of
life in which his remaining senses would become highly and acutely
developed. As Garret’s brain matured and
he became emotionally prepared for his life as it was, his relationship with
his psychologist was terminated.
Garret’s mother and the psychologist
fought for a free, public education for Garret.
When the school board in Garret’s community resisted, the matter was
adjudicated and Garret was allowed entrance into school. The decision was appealed several times and
eventually ended up in the United States Supreme Court where the Judges ruled in
Garret’s favor. The ruling has set precedence
for thousands of handicapped children across the nation.
In daily life, Garret continues to
require 24/7 supervision for the care of his body and the functioning of his
ventilator. Garret considers his care
and equipment simply a part of his daily life.
He sleeps through most of the personal care essential to keep his body
functioning.
And so, we might just ask how the
quality of life is determined for any one individual? In all probability, we never know our own
limits until faced with our own worst fears.
For some, it may be the loss of a limb and for others, the loss of
speech, sight or hearing. For some,
quality of life is determined by athletic or intellectual skills; for others,
by the accumulation of wealth.
For Garret, quality of life as a child
meant that he was able to get a free, public education in the least restrictive
environment. As an adult, quality of
life for Garret means he is able to be out with friends and that he has people
who love and support him while he takes college courses and ponders the various
mysteries of life. Garret maintains a
steadfast belief in God as well as an optimistic attitude about each and every
day of life granted to him.
Finally, we might ask who should
determine what the quality of life is for any one individual. More and more, health issues are legislated
rather than left to personal decision-making.
There are pros and cons to each side of the coin but for Garret: “I do not remember the day I was born and I
do not remember the day that I died. I only remember myself AS I AM.” (This is the first sentence of the book AS IAM by Garret Frey and Dr. Karen Hutchins Pirnot.)
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Dr. Karen Hutchins Pirnot has worked with children and
families in various capacities for the past forty years. She is a Clinical Psychologist who practiced in Cedar Rapids, Iowa and later, in Sarasota, Florida. For years, she worked extensively in the
human services and juvenile justice systems as well as various school and
hospital settings. Dr. Pirnot worked
with special needs children as well as children and families experiencing
transitions and tragedies. Dr. Pirnot’s books are written to empower children
and their families. The books may be
found on Amazon, Barnes and Noble and www.drpirnotbooks.com
