the power of cake

We had two events on Rare Disease Day, and two cakes. What’s a celebration without cake?

cake NIRDP

Cake is for sharing amongst family, friends and community. It is a great leveller. People gathered to admire, to photograph, and enjoy. There are no hierachies as far as cake is concerned. No need for formal introductions when admiring someone else’s hard work. There were smiles and laughter from all.

Cake brings a party atmosphere. There were no brightly coloured balloons, but there were sweets on arrival, finger food for meals & people were dressed up (I wasn’t wearing pyjamas!!). There were presents- not simply free pens from some exhibitors, but awards. The NIRDP public service award went to Kieran McCarthy, MLA and the NIRDP community award went to our mate Ditzy. (The long term reader may remember tales of driving round the region with Ditzy and the always attendant chaos.)

Days later some of the symbolism of cutting the cake occurred to us: not only honouring the cutter as in a birthday, but marking a new togetherness as in a wedding. The message was we value you, and we want our relationship to be long term. Our cake cutters were the Health Minister, VM (lead for Clinical Genetics), Ditzy, Kieran, AK (Chair of the UK Rare Disease Forum) and DS (head of Commissioning for health & social care in NI)- patients, families, clinicians,policy makers and politicians. Cake to mark the development of community.

All that, and it tasted great!

Learning from Rare Disease Day 2016- always choose cake; you’ll think of a good reason later.




I was 15 when John Lennon died. I remember the shock, sitting on the bed with my oldies, listening to the morning news with disbelief. No, surely that’s not possible? Dead? That doesn’t make sense.

This morning, Spurs Fan woke me with the news that David Bowie has left us, and I felt just like I had 35 years ago.

I wasn’t a Bowie fan when I was 15- that came later. I met JWN at university and we combined our record collections; my Beatles, Springsteen and Ultravox to her Bowie and Velvet Underground. I learned a lot, and loved it all.

Bowie was there, always, it seemed. Where there was creativity, theatricality and fun, there was a hint of Bowie.

Of course, Bowie’s influence is beyond music- Caitlin Moran calls it…


But where to start today? I’ve spent hours with 6Music listening to much wonderful music by Bowie, influenced by Bowie, and which influenced him. I’m hearing old interviews, and bereft broadcasters and listeners sharing tales of humour and kindness. A man who did things his own way, and enabled others to do the same.

Thanks, Bowie. The stars will look very different today.








the solution to all our woes

People! I am a genius! (Why the puzzled looks- surely you knew that?)

We all know family and friends who have cognitive issues/ who are affected by depression or anxiety/ who have neurological conditions. The human brain is one of the great mysteries. Capable of so much; devastating when something goes wrong.

The regular reader may remember that I have learned to deal with some of the physical fatigue I experience, but continue to struggle with the thinking problems. Often, my brain feels like mush, and reading, writing, talking, are simply beyond me.

Yesterday, I found a solution. In the fun shop Tiger of all places.

plastic brain

I bought a new brain. I can’t promise it will do anything other than entertain me, but we can all hope.

Do you want one too?

chronicle of an empty nest foretold

Off they went, both my little people, for a week. A week of Irish dancing and carrying on with others from different parts of Europe, in Poland. Parents and grandparents scoured social media for updates from the festival or dancers. It’s entirely possible that one of us actually waved with excitement at a screen on seeing a pic with daughters in it. (Technology, eh?)

pier jumping not dancing

And back in Belfast we looked at each other, and around us, a bit like meerkats. Is this what the rest of the world is like? What do people do with their days?

We had adventures, doing things we don’t normally get a chance to do. There were cocktails, afternoon tea and a fancy lunch or two. We explored Parliament buildings, listened to music in a pub, and went to a different beach. We watched a box set, read multiple novels and had boring financial conversations with someone who understands these things. The house stayed tidy. There were no random explosions of energy or noise. No complex taxi arrangements negotiated with known unknowns via snap chat. No daytime TV. All was calm. Ordered.

We’ve had fun, of course. But yet…

Half of us are missing. Jake keeps having a sniff about to figure out where they’ve gone. We haven’t laughed as much. I remember now that watching soap operas is meant to be a social activity. My arms have ached with the empty. I didn’t start counting down the days until they were half way through; now I’m at hours. They’re coming home today, and I’m very excited.

A week, people. It’s only a week. They’ll be grown up in the blink of an eye, and we’ll all be laughing at my excitement of today.

This evening chaos, noise, squabbling and laundry return in full force. My arms and my heart will be overflowing.

(Expect the next post to be grumbling about chaos, noise, squabbling, laundry and teenage attitude.)