Who decides Quality of Life?
There is a lot of discussion these days regarding quality of life, especially in terms of the new Obamacare medical coverage ... or lack thereof as the case may be in some instances.
All of this makes me think of my Uncle Mark Baker. My Mom's youngest brother Mark was born with Downs Syndrome. Back then he was called Mongoloid. My entire life Uncle Mark was there, at family gatherings, coming to visit, going to church. When Mark was born, the doctors told my Grandma she wouldn't be able to take care of him, and he was institutionalized. Eventually as years passed and times changed, he moved into a group home where he lived for many years, lovingly taken care. My Aunts and Uncles would come get Mark for outings. He was very well loved.
Now, Uncle Mark couldn't talk. Well, not like you or me. However, he had NO problem making his wants known. He knew some sign language and had words of his own. He had a favorite song that he would sing and delighted in getting the whole family to sing his Ne Ah Ha song with him. He LOVED hamburgers, his Mom and his family. Mark had a job, roommates and was generally an extremely happy guy.
Uncle Mark made a huge impact on our family. He was the youngest of 8 children. The other 7 children each had children of their own. Now, that generation has children of their own. Several of us have degrees in nurturing type professions (nursing, social work, teaching). Some of us have adopted children from within the foster care system. One of my cousins has adopted 5 special needs children, kids that no one else wanted.
When my son Tyler was born at 24 weeks gestation, weighing 1 pound 5 ounces, he had a Grade IV bleed in the center of his brain. Blood seeped into both right and left ventricles as well as into the brain matter itself. The doctors showed us the scans and said Tyler could be anything from normal to a vegetable and most likely would have mental retardation and other disabilities. They said given his extreme premature birth, we were facing a very long road ahead.
I remember digesting this in my post-op, post-partum heartbroken new mother's heart and then thinking of Mark. I remember saying something to the effect that I'm content if he lives as happy a life as Uncle Mark.
My Uncle Mark passed away several years ago, going peacefully while sitting on the swing in the yard. Many people would have said he had no quality of life. He never married, never had kids, never travelled the world - indeed didn't live a typical life at all. However, he deeply impacted everyone who knew him in ways that we never guessed. Like that pebble thrown into the water, the ripple effects of our shared family love for Uncle Mark, and his love for us, will be felt for generations.
So ... I guess I'm afraid when anyone is judging someone else's quality of life. One day a review panel could decide that a life like Uncle Mark's, or my son Tyler's, isn't worth saving, or spending money on. Our world would be much poorer for it, and it's not a world I want to live in.
All of this makes me think of my Uncle Mark Baker. My Mom's youngest brother Mark was born with Downs Syndrome. Back then he was called Mongoloid. My entire life Uncle Mark was there, at family gatherings, coming to visit, going to church. When Mark was born, the doctors told my Grandma she wouldn't be able to take care of him, and he was institutionalized. Eventually as years passed and times changed, he moved into a group home where he lived for many years, lovingly taken care. My Aunts and Uncles would come get Mark for outings. He was very well loved.
Now, Uncle Mark couldn't talk. Well, not like you or me. However, he had NO problem making his wants known. He knew some sign language and had words of his own. He had a favorite song that he would sing and delighted in getting the whole family to sing his Ne Ah Ha song with him. He LOVED hamburgers, his Mom and his family. Mark had a job, roommates and was generally an extremely happy guy.
Uncle Mark made a huge impact on our family. He was the youngest of 8 children. The other 7 children each had children of their own. Now, that generation has children of their own. Several of us have degrees in nurturing type professions (nursing, social work, teaching). Some of us have adopted children from within the foster care system. One of my cousins has adopted 5 special needs children, kids that no one else wanted.
When my son Tyler was born at 24 weeks gestation, weighing 1 pound 5 ounces, he had a Grade IV bleed in the center of his brain. Blood seeped into both right and left ventricles as well as into the brain matter itself. The doctors showed us the scans and said Tyler could be anything from normal to a vegetable and most likely would have mental retardation and other disabilities. They said given his extreme premature birth, we were facing a very long road ahead.
I remember digesting this in my post-op, post-partum heartbroken new mother's heart and then thinking of Mark. I remember saying something to the effect that I'm content if he lives as happy a life as Uncle Mark.
My Uncle Mark passed away several years ago, going peacefully while sitting on the swing in the yard. Many people would have said he had no quality of life. He never married, never had kids, never travelled the world - indeed didn't live a typical life at all. However, he deeply impacted everyone who knew him in ways that we never guessed. Like that pebble thrown into the water, the ripple effects of our shared family love for Uncle Mark, and his love for us, will be felt for generations.
So ... I guess I'm afraid when anyone is judging someone else's quality of life. One day a review panel could decide that a life like Uncle Mark's, or my son Tyler's, isn't worth saving, or spending money on. Our world would be much poorer for it, and it's not a world I want to live in.
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