Posted on 05/05/2010 4:19:22 PM PDT by wagglebee
A gal in my parish is the grandmother of a child whose parents knew he would be born born with multiple disablities. She has helped her daughter and son-in-law in every possible way taking care of this grand-son. He is now 20, by the way, though the grandmother knows she will still probably outlive this frail-but-tough, pitiable but mighty-fine boy.
She says that he (Raymond) has also become the nucleus of a small but valiant, crying, laughing, caring community. She wonders out loud if that's what such children are "for": to serve as the nuclei of caring communities.
She also said to me, "When society looks at a sonogram of a baby with a genetic disease, the real question is not 'Is he really human in every sense of the word?' but 'Are we?'"
That is PERFECTLY stated!
"Doc, what are my chances?">[? "Well, according to my experience, and what the literature says, someone with your diagnosis and the progression of the disease thus far indicates about six months from onset."
There will always be exceptions that defy experience and science. Patient lives eight months. "See! The doctor wanted me to die! "
If we can’t take care of the weak, then we lose our own humanity.
That is really beautiful.
I have started a page supporting parents and family/friends of children who have terminal birth defects. My daughter was declared incompatible with life at 19 weeks and that diagnosis changed our worlds. The definitions used with terminal defects are inaccurate for many of the infants. Some are living days, weeks, months and years past birth. We are trying to get support to have the definition changed from incompatible with life to fatal defects. We are not pushing political views or pro or anti abortion only a definition change for our children. If you would support us in any way here is our facebook page. https://www.facebook.com/EndincompatibilityWithLife
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