The time to make a decision is coming

I  have been carrying  on with things, sweeping the floor, loading the dishwasher, entertaining the kids and driving them around. We haven't spoken much and big D had made his feelings clear before the meeting that he is against it, I'm 50/50, as usual I don't have enough courage to be 100% about anything. 

 I look at little E and feel panicked and a bit sick. Yesterday after the "big traceostomy meeting" I felt like running away with her, hiding her somewhere, a big dark cave like a bear and her cub so no one could find us. I don't want another doctor near her. shes been through enough. shes 2 years old and has had 5 operations, i want her to just be a little girl. 

And I keep thinking how will I cope?

These thoughts are totally selfish because ultimately it doesn't matter about me, it's little E  who we are trying to keep alive. And aren't I lucky that I am able to keep my child alive? A hole in her throat is nothing compared to losing a child. If that's what she needs then I will have to just shut up and cope with it. 

She's just started to talk in sentences and it's so lovely to have a jibber jabber conversation with her and I'm sad that she will lose her voice (maybe not forever but for a while) I'm overwhelmed at the thought of her being in hospital for 4 months and I'm worried about the suctioning and care of the tracheostomy. I've read horror stories about kids getting mucas plugs and suffocating.  Every amazing parent of a child with  a traceostomy has told me I will cope and things will get easier and she will thrive.

 They all sound braver than me. 

Is she really that poorly? The doctors tell me she is and I know deep down she is but what if she gets better? She's strong, maybe she would cope without it? Doctors don't always get it right!! 

I got asked today why I have turned down the 7 nights of carers, I said its because I want my house to be my home again. But at our first stay at little havens hospice a lovely and crazy lady once told me "number one rule, don't turn away help!!" But it's not help, they would be more help to me if they cleaned my house cause all they do is upset Little E and cause me stress.

The time to make a  decision is coming very soon, but not before they have done every single test possible to see if she's improving and show some hard facts and figures to big D. I'm not like him, i don't need evidence  i can see little E  works hard and Some days is on the wrong side of living on the edge.

 someone just grant me one wish?