Kind of how I feel after reading the story.
Posted on 07/20/2006 4:36:03 PM PDT by wagglebee
And if they had murdered her, as no doubt the geneticist recommended, they would have missed it all.
DISCUSSION ABOUT:
When What Seems Broken is Perfect: The Mother of a Disabled Child Tells her Story
WARNING: Be prepared to cry.
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Pro-Life Ping.
Ping!
This is a must read!
'An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.'
NEVER leave the bedside of a very ill hospitalized patient. The hospitals are crazy. DNR has to be a specific request, what on earth happened here?
by
Emily Perl Kingsley
© 1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Kind of how I feel after reading the story.
Thanks for the repost. Sometimes we need reminding.
You'd have to be made of stone not to cry after reading that one. A lovely essay.
God bless you and your precious grandchild.
I knew a family who aborted a Down's Syndrome baby because they didn't want it to "affect" their older child. Tell me, what would the "affect" have been? Would he have missed much in life with a disabled sibling? Or would he have gotten to see, learn, and experience more things than he has been able to now with only school and baseball and healthy friends?
Thank you.
For posting this heartrending story, thank you, wagglebee, with tears flowing and prayers going up for this extraordinary family. I hope many pregnant, or someday to be pregnant, women read it.
You're welcome. :-)
This is truly criminal - these parents sent their child to the hospital to be healed, but instead the child was denied medical help, and died of respiratory infection. The child should never have been left alone in the care of these criminals...
No one should ever again assume that hospitals and doctors have the best in mind for their patients; the elderly, the weak, and the very young should all have skeptics as advocates, asking questions, demanding answers and monitoring care. Even healthy young adults are at risk, when accidents create coma or brain damage, for their undamaged organs are so very profitable to the hospitals. When medical professionals tell us that a loved one will "never recover" is "hopelessly brain damaged", "brain dead" or "would be better off left to die" one must ask the question: is their any profit to be made off of this persons death? Are they concerned about payment that may not be rendered? Are their any body parts that might be sold from this person once they are deceased? Or perhaps does the medical professional assume that this person will not recover because of prejudices/assumptions made about the elderly, the disabled, or their families?
I had wonderful doctors by my side when I delivered my son, and I was truly blessed. However, I had three friends who delivered prematurely at different times, and all three were respectively advised to withdraw respiratory support from their babies because they were "too brain damaged". Each time, a doctor came around and told the parents that the child would not have a quality life, and that the support would do no good, and that if it were his child, he would choose to withdraw care. Even though the doctors were different at each hospital, and were seperated by time and space of ten years and hundreds of miles, it was as if the doctors' speeches all came from the same book. Two of those babies went on to become wonderful young children, full of life and hope. The third died at the hospital after the parents consented and withdrew the breathing apparatus.
Thank God two parents allowed their children to receive the best care available, rather than relying on the recommendations of the "doctors of death".
Doctors are no longer bound by the Hippocratic Oath, and Hospitals are not longer havens for the sick. Although many good medical professionals exist, they are becoming overwhelmed by the demands of the institutions they serve. Once families recognize this, they will no longer assume that doctors, nurses and hospitals have their best interests in mind; they will then stay with their loved ones 24/7 while they are in the hospitals, and never let them out of their sights. They should sue the hospital, and demand a criminal investigation at the very least.
It's too bad that the baby wasn't given a chance to live by the ER staff. I'm confused as to why they would not try to resuscitate?!?
Because decisions to resusitate are made by callow residents who staff most ERs.
I know what the effect is . . . their older child knows that if he somehow becomes "not perfect" - disabled or critically injured in an accident - his parents may kill him.
How's THAT for burdening a child?
well, have to go, can't see for the tears. I've read this before, I cry every time. Today my son said, "Mama, I'm darn cute, aren't I!" Well, he is. And the world is a better place because he is in it.
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