In addition to N being ill, over the last couple of weeks we have had a session with our Children's Community Nurse to start filling in the 'document of wishes'.
Families with life-limited children are encouraged to fill these out, rather like a birth-plan, in order to address difficult questions when you are not in an emergency situation. The document gets circulated around the people who need to know; and in addition it gets given to the ambulance service, so that if they get called to your child, they know what you want them to do.
In our case, we have ticked all the boxes for 'full resuscitation'; but in the future we will have to think about how we feel about situations where ventilation might be needed, whether when she is severely ill we want her at home on oral antibiotics or on an IV line in the hospital. That sort of thing.
There was also a box for 'funeral arrangements'.
It was quite grim. But having done it, I guess, we can now put it on the back burner and get on with enjoying life.
We have been planning our summer out and about, thinking about where we can take our brand new motability van (due-date, some time in June), with all the bells and whistles of a tail-lift and wheel-chair safety to take N around. And we have got our funding from the Family Fund for a Vitamix blender to blend 'ordinary' meals for N and feed them via her gastrostomy tube; B is currently online, comparing machine specifications.
This week we are at the children's hospice and I am sat in the conservatory, with a cup of tea, writing away, whilst L is with the Sibling Team watching a movie and N is out with her two carers, on the swings. It is incredibly peaceful here and I think I've got to the point where as soon as I walk through the door I switch off my conscious vigilance on N's behalf.
So, some negative things. And some positive ones.