Would I rather?
When Nate was first born and didn't feed, move, open his eyes, react to light or sound, or breathe and we were told bad news after bad news I started to play "would I rather?"
This is the game you play to stop yourself spiralling into despair at the incubator side of your son who you you are told has "a serious genetic condition". It goes like this..
Would I rather he were deaf or blind? Please God not both. Maybe I could cope with one? Could I cope with both?
Would I rather he was severely physically or mentally disabled? Please God not both. Maybe I could cope with one? Could I cope with both?
Would I rather he enjoyed life or had a longer life? please God can he have both?
When faced with one bit of bad news I would think well yes maybe he wont be able to do that but maybe he will be able to do this. Maybe life won't be like that but maybe it will be like this. Over time the stakes have changed many times and Ive sat by his side thinking I don't care about his disablilies but please God let him live.
Anyway suffice it to say I think we came out of this bartering system quite well. Nate is amazing and I am thankful for every day we have with him.
Saying that however today's appointments made me think back to those days in the beginning. I bumped into nates respiratory consultant who told me his tracing shows hes still not ready to come off oxygen. then I had a tired grumpy nates eyesight assessed. This did not go well. The summary being they don't expect anything from him so will only see him yearly from now on. I got the sympathetic looks. The "how are you coping?" question. It all made me more aggravated and feel more defensive of my amazing child.
So I left playing "would I rather"
Maybe he won't be able to see, but maybe he will be able to breathe properly.
