A Life Worth Living

In the NICU we were encouraged on more than one occasion to discontinue life support or sign a DNR order. The neos seemed to think that the odds were stacked too high against our little man. Instead of just saying that he was "critically, critically ill" while shaking their heads they gave us grave looks and talked about the likelyhood of our sweet baby being a vegetable, his brain being mush, and the unfulfilling life that we were condemning him to by refusing to give up. You might think that this is upsetting to me. While at the time it was hard to hear, I trusted these people to give me the best, most accurate information they had. They were saying these things because they believed them to be true, not because they had any intense desires to see me disconnect my child from life support, or because they wished the worst for us. Over time, these doctors came to know what I already knew - that Noah was a fighter and he had an awful lot of prayers to get him through the tough times. Instead of saying what would happen to Noah when something bad happened they would say "you'd better get those prayers started up" or "typically in this situation xyz happens, but Noah hasn't been typical yet so lets just wait and see".
When we left the NICU I thought I was done having to defend my belief that my child's life really was worth living. Boy was I wrong! It seems that there is a general debate about how young is too young to save preemies. To my surprise, there are some who believe that a 24 weeker's life is not worth living. Not just wimpy white boy 24 weekers with disabilities and long NICU stays like Noah - all of them. I ran across one of these people a few months ago in the form of a Developmental Pediatrician. We were supposed to see him a few months after we left the NICU, but due to some job turn around in that department we didn't get in until 11 months post discharge. At that point we felt we had a reasonable idea about Noah's development... He's slow in speech and has feeding issues, but he's gradually catching up everywhere else. That is he's still behind in a few areas, but is ahead in others and is less behind than he was at discharge. Not bad for a vegetable who's brain is mush that lives an unfulfilling life, eh? Rather than being amazed at his progress (Noah looks really bad on paper, so most people who actually meet him are pretty impressed), he gave us the same old doom & gloom from NICU days and then as if to comfort me said "You just can't expect much from 24 weekers." Thanks, Doctor. I'll keep that in mind. If you should come across my blog and decide to feel sorry for my son and his issues, I feel sorry for you. Because if all you see are his problems you're missing out on an awful lot. Who knows what else in life you might be missing? Noah's life is worth living. And I'm going to keep saying that for him until he learns to say it himself.