I'm playing "would I rather"

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.

Why i love our "weekend normal" #define normal

Why do i love our "weekend normal"?

This post is part of #define normal blogging challenge a blog hop set up by http://www.justbringthechocolate.com/define-normal/


Anyway, to understand why i love our "weekend normal" you need to understand weekly normal which goes something like this

Monday- physio group AM, lovely leanne from rainbow trust helps PM ( i do shopping)
Tuesday- CCN nurses sats check and weigh Nate AM Visual impairment sensory group PM
Wednesday- portage or home visit from visual impairment specialist AM ( alternate weeks)
Thursday- Development group or hydrotherapy AM, Physio lunch time, Sats check PM
Friday- HCA helps me AM, 

In addition we fit child development, paediatrician, neurologist, respiratory, feeding, opthamology, OT and hearing regular appointments. Then there is the ordering and pick up of prescriptions, oxygen delivery, feeding equipment delivery and incessant phone calls to make and recieve.

BUSY is not the word.

So weekend normal? "What is that" i hear you ask. Well, it is basically NONE OF THE ABOVE.
Weekend normal begins with Nate shouting at us to get him up and get his mask off.

The shouting is mainly "rah raaah rah!" "maaaaaaaaaaaaaaam" roughly translated as " get me up you pack of utter bleeps". So nasal canula on, mask off, humidifier off, oxygen concentrator off, ventillator off. Nate in bed. Then thea attacks us and we all have lovely snuggles.

This is the most important part of the weekend. Time together without rushing about. Part of our life which would seem the most "normal" to outsiders looking in.
AND I LOVE IT

Quick blog post- loved my husbands face

I loved my husbands face yesterday when I said "look look at Nate" and promptly sat Nate up facing me on the floor so he couldn't use me for support. And Nate managed to hold his head and keep his back straight.
"look look at this" I said and flipped nate round, gave him some support to straighten his legs and he put weight through them!
My husbands face. Priceless :)