How?

We have just had four days at the children's hospice.

It was good to not have the responsability of Keeping Rosie safe, Keeping on top of feeds and drugs and ensuring Both Rosie and Eve were safe and happy.

It was good to have meals prepared for us and someone else to clear up the debris and leave the table wearing Rosie's lunch.

It was good to be away from home, away from the phone, away from constant demands on our being.

It was good to spend some time with Joshua and christina without having to rbeak off to do something else.

It was good to go to Naidex, to explore Ikea, to have fun and laugh with Joshua and Christina and give them of ourselves.

Thursday it was fun to head off to Alton Towers with just the two of them and let them explore a little. Shame it was the one day of the week it rained and was cold!

Not so good was the fact that I was not able to offload my fears and frustrations in a way that gave me some freedom from them. I was not able to shed my "front" of coping. I did not discover how to "be" how to react how to deal with my feelings and how to know what to do "if"!

I had a chat with the family support worker and nice as she is she was not "our" family support worker and I did not get what I needed from the experience....I dont know what I did need, I dont know what I expected, I just know I did not come out of it feeling better able to cope.

We left the Hospice early on Friday to attend a neurology appointment. We learnt that there was irefutable evidence her condition is progressive, no evidence to suggest it is anything other than Mitochondrial Cytopathy and lots of evidence to show it is.

We learnt that her Autonomic heart arythmia's are possibly far more significant than we ever imagined,

We have come away with a medication that may help with her painful spasms but could cause other problems with muscle weakness, we came away with more heartache but more acknowledgement that our worries are justified.

We came away with the certainty our daughter is deteriorating and everyone can see it, it is not in our imagination.

We came home then, to put on our front and get on with life and try to make the most of this life!

Praise God this life is not all there is and the suffering of this world is as nothing when compared to the glory that is to come!

Hugs