We were early. We had jobs to do.
Luckily, those included drinking coffee and consuming yummy pastries. Yes, there was influencing, relationship building, and all manner of worthy stuff; that is both fuelled and eased by coffee and pastry.
The Ministers (Northern Ireland and the Republic of Ireland) spoke positively.
The session chairs kept to time.
More work will happen as a result of the day.
A good result in anyone’s book.
Planning for the 2014 event is already underway.
What time, Speccy?
Why, dear reader, Rare Disease Day! Those of you who were around this time last year may remember videos, anxiety about an event and me practising my burble for the Health Minister…
The 2013 theme for Rare Disease Day is Rare Disorders Without Borders- particularly relevant to a small island on the far west of Europe with its own international border.
NI Rare Disease Partnership are co hosting a joint event with the charities interested in rare disease in the Republic of Ireland. There will be Ministers, an EU bod, professors of complicated things, and examples of effective cross border health care work.
Most importantly of all, there will be patients, carers and families telling tales of living with rare disease, sharing their expertise with the Ministers, the policy makers and the commissioners. It is only by working together that we can begin to address the issues that affect us all- international boundaries are far from our only concern.
Our fabulous, dynamic, innovative event (I hope!) will be held in City Hall, Dublin on 28 February. In the unlikely event of me not having nagged at you before, and you’re interested in attending, you can register here. It will be well worth attending.
At least one of the speakers will be
devastatingly gorgeous spellbinding.
Prior to the weekend, the last family funeral I was at was my mother’s.
This time, I brought sandwiches and carried a tray of buns. I saw folk I hadn’t seen since ‘our’ wake. It’s different now. Amongst the visitors who wanted to see Billy’s family and siblings, I wasn’t just a random niece amongst many as I’d expected; I was Ann’s daughter. “Ah, poor Ann…” *sympathetic head tilt*.
I wasn’t prepared for that. Repetition made it no less freaky.
I discovered that I could remember every step I took down the aisle behind her coffin, but had no idea of how many people we’d given soup and sandwiches to.
I looked round at all the white heads, and the ever expanding family (Who owns that baby? Which of the girls is that?). I spent some time with the eldest auntie and managed to upset her with the news that both my parents are dead. She wonders about her own parents, and her missing brothers and sisters. Her world is normally contented, but she’s very aware of, and regularly shaken by, the gaps at social events.
Auntie T gave me a photo- one where I’m very clearly being organised by Herself. She (Ah, poor Ann… *tilt*) is bright, colourful and telling me what to do. I’m dark haired (isn’t dye wonderful?), with the face that recognises that this is neither the first nor the last time she’d be knocking me into shape. I remember the event well- we were both happy and at one with the world, missing the old man, but powering on.
These white haired folk, they teach us so much. How to think of white heads and the bald ones up to divilment in the hereafter, together. How to take comfort. How to power on without them.