celebrating and connecting

I was exhausted and looking forward to time in the Great Wilderness of the West (a remote caravan site on top of a Donegal hill). We’d lie about together, play board games, explore beaches and generally chill out. We’d also investigate various hostelries for a few moments of internet access. I blamed the children…

I could have stayed in the caravan for ever, but it was time to pack up for the winter. Spurs Fan and Jake came home, surrounded by bedding and laundry. The girls and I moved into a hotel with a swimming pool and heat. We were at regional Irish dancing championships, and I didn’t have to drive anywhere. I could relax, and reconnect with the outside world. There were hundreds of dancers & hangers on, all of us looking for wifi. Ok, some were looking for good performances and medals, but everyone wanted wifi. It didn’t work.

I was full of excitement and disbelief. After months of delay, the NI Rare Disease Implementation Plan was going to be launched. We’d been working and lobbying and gently encouraging. I’d resorted to a little twitter nagging. The occasional Health Minister was studiously avoiding his constituency office, in case Ditsy was still there, waiting to talk to him. I wanted to shout it from the roof tops. I wanted to jump for joy. We were being listened to and involved. Huge steps forward for rare disease in NI were being announced.

And I was miles from home, with dodgy internet access.

Late at night, I saw a picture of Chair, the Health Minister (back to full time), and one of our friendly neighbourhood geneticists. Not only do we have a plan, we’re getting a Genomic Medicine Centre, a fantastic resource for speeding up diagnosis.

“It’s happening, it’s happening, I must send a message… oh, internet down again.” I was so excited, and had nobody to share it with. The other mums nodded politely as their eyes glazed over. The girls said ‘that’s good’ and went back to practising clicks and jumps and being fierce.

By the time I got back to reliable internet, my brain was too fogged to think, or communicate, or to read anything.

Eventually, I will makes some sense of what lies ahead for us. In the meantime, a little kitchen boogie is appropriate.

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?)

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.)

feeling the buzz again

After months of busyness and exhaustion, I’m beginning to recover. Maybe it’s the prospect of long days in the middle of nowhere, or family time with Nana and Grandad. Or maybe it’s dancing free weeks ahead. Whatever the reason, I’m chuffed to feel the space, to consider that I can use that, to feel that all my energy isn’t being subsumed by just keeping going.

Today, tasks seem like a bit of work, rather than enormous, shapeless mounds which defeat me as soon as I think of them. I’m going to apply for a part time job. I don’t expect to be considered for it, But I’m going to apply anyway, because I think I’d be great for the organisation. (Where did that confidence come from? I hope it stays.)

I’m going to figure out how to be organised. Rumour has it that nifty apps make that easier than I’d think. I just need to learn how …

I’ve had plans, for far too long, to add all sorts of patient information and rare disease information to the blog, so I know where I can find it. That would teach me how to curate content, which is apparently a good thing. I can do that.

I even applied for a bursary to go back to the summer school I was at a few years ago. Memoir, poetry, talks, drama- how exciting would that be?

Our book club recently read Station Eleven, by Emily St John Mandel. There’s a lot to like about this book- don’t let it’s partially post apocalyptic setting put you off- but I particularly enjoyed how Shakespeare and music continue to survive and enhance lives. There is humour and empathy, murder and broken hearts. There are lists of what’s lost and a museum of the pre apocalypse mundane. There is a wonderful reference to Star Trek Voyager, as the motto of the Travelling Symphony is ‘Because survival is insufficient.’

I like that sentiment. I want to do more than simply survive. I want to have fun and be inspired. I want to connect and challenge. I want to learn new things, and share the things I already know. I want to laugh on beaches and cry in chapels and snuggle on sofas (or any variation on those). I want to spend time with my people and have little adventures together.

We know that my ME means that my grand plans may stay as simply plans, but we know also that I like to mark the good moments, to remember that behind the added weight, the pyjamas, and all the snoring there are times I feel like myself. That’s always worth celebrating.