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.
I know this is terrible of me, but when I first went to the hospice with S, I'd look at the other children, read about their problems and think is S better off in some ways? Would I swap his condition with theirs if I could? Probably not very healthy of me to think that and I've not revisited that again in my mind.
ReplyDeleteBut what can I say? You have a gorgeous little man there (not to mention his beautiful sister), who is one brave soldier. Give them BOTH a big cuddle from me and Sam. Zx (www.trickycustomer.wordpress.com)
Cheers hun, and cuddles given. Xx
Deletewe have played that game too - from time to time.
ReplyDeletewe have e, just as you have nate and i bet you wouldn't change him for the world now?
so maybe he won't be able to see?
he'll still be able to feel your love, though
x
I'm not sure I ever played this game, I was too stunned all the time to think about anything very much apart from getting through each day. Natie is a fabulous child and there's every chance the experts are wrong. As you know my dd was on oxygen for two years and isn't now, she also had a long long list of things wrong with her - apparently - and she doesn't have many of them anymore. So don't give up hope xx
ReplyDeleteHopeful mummy and looking for blue sky-
ReplyDeleteNo I know he's fab. Wish other people could see that. I have pulled myself together now.
And tbh, Nate likes proving people wrong x
I am learning NEVER believe 'Never' - carry on proving them wrong Nate x
ReplyDeleteI like Nanny Anne's comment! He is a great little fella at proving them all wrong and I am sure he will continue to do that. I've played that trade off game with God too, it's funny how the goal posts changed and sometimes the things that seemed important at first aren't the things you worry about now. Glad you're feeling better now . xxx hugs xxx
ReplyDelete