"Quality of life"

I just finished watching "99 Balloons". I'm sure most of your have seen it, you'll remember the tiny little boy named Eliot Mooney who was born with Trisomy 18 and lived for 99 days. Trisomy 18 is considered a "not compatible with life" diagnosis that is found after pre natal testing.
I had seen the video before and recall getting very teary watching it. I'm glad I went back and watched it again today after my cousin, Jill, had emailed it to me. This time, instead of being totally caught up in the heart wrenching emotionalism of it, I could sit back and notice that, in spite of what appeared to be two quite young parents, I saw such maturity and understanding. I was so impressed with what amazing ways this dad, who narrates the film, could show and express love for his son. I am so used to hearing about parents who bail after getting the "quality of life" talk from their doctors. This child had such a high quality of life, regardless of what his genetic destiny was. This child was enveloped in love, respected and admired. Eliot, in his 99 days, had the chance to prove that a life lived, no matter how briefly, is a chance to feel love, and to return love. I had the realization through watching again, that "quality of life" is up to mom and dad, not the diagnosis. As parents, we are the providers of the quality of our children's life and the medical differences are not what define how our kids lives are going to be lived. The "quality" talk from the medical community are a one dimensional best guess reflection of what their own personal capacities are for loving a child with a disability. This is worth considering when having to sit through such a speech. You are not your doctor. As a parent you know better than anyone, just what kind of quality you can provide to your child. A doctors presumptions end at prescriptive medicines, surgery or therapy. Beyond that it is up to you to realize that your efforts are indeed the most valuable asset in defining a child's quality of life. It's time for moms and dads to take back their babes and realize that their welcoming arms and their respect and affirmation toward their child are what really count.