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.

christine, simon, shane

“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.

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4 thoughts on “celebrating and connecting”

  1. Perfect musical accompaniment! 🙂 The advancement of a Genomic Medicine Centre is very significant. This is such excellent progress and the lack of Internet connectivity is so frustrating when you’re hoping to share the good news. Come back to this success every time you feel like your advocacy roles aren’t moving mountains. They are! ox

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