You may remember that I was rabbiting on about a new organisation, a launch, and the Health Minister. That all went well, but it’s only a start. There’s real work to be getting on with.
The day after, I got to help present NI Rare Disease Partnership as a model of good practice. That felt a little surreal- I’m sure that making things up as you go along isn’t really good practice- but we had clear aims, a good process, and lots of learning. Apart from anything else, I need to get used to introducing myself as Speccy McSpec, from NIRDP.
The carer conference was held at a great venue– I really must go back one day with a camera to capture the footbridges (locks from the canal) and sculptures. (Grannymar’s influence again.) The sun was out, it was a March morning that really felt like spring. I was still buoyed and buzzing from the day before, and thanking all gods for grandparents.
Nana and Grandad were here for the busiest week in months, which was wonderful. Their presence alleviated the panic and anxiety associated with being home on time, doing homeworks, providing nutrition. My head was full of events, press, crises, and there wasn’t much left for the real world. I got to fall in the front door, do hugs, and promptly retire to bed without guilt.
Having fed and watered everyone, and tamed the garden, Nana and Grandad escaped and we’re returning to our normal chaos. Without a major event, there are no crises, just the odd mild panic. The ‘to do’ list for the
four leaf clover club NI Rare Disease Partnership is getting longer and longer. I’m getting some rest.
There are plans, and plans to plan. All is good.