And the band played on

The rain changed everything. Two days, two events. On Saturday B and I spent a sunny afternoon at a small community event in East Wall that featured a local band. We watched and danced and laughed.


On Sunday we went into town to go to a heavily advertised country music festival in Smithfield Plaza. But it was raining. After weeks and weeks of blue skies and hot sun, the weather broke, the skies turned grey, and the rain fell steadily all day long.

A bit of rain never stopped us, and we didn’t think it would stop anyone else either.

As we neared Smithfield, I told B to listen to the music, as you could hear it very clearly. Too clearly, I thought.

I was right to wonder, because as we turned into the Plaza, a sea of damp grey cobbles stretched in front of us, with just a handful of diehard and bedraggled music fans awkwardly tapping their toes in the empty space in front of the stage. Their cowboy hats droopy and soggy, their boots piebald with rain. Plus a couple of families huddling under umbrellas. And us. Of course we enjoyed it. Not my usual taste in music, but this was live music and that alone makes it special. And it was free too!

 

Perhaps that was the problem. If you don’t pay, you can stay away, especially if it rains. And stay away they did.

But you know what? It was a privilege to be there. They were professional musicians. They could have been playing to 20,000 people instead of 20. They chatted to the very small audience, joked and played and sang as the rain tipped down.

In a way it was awe inspiring. It can’t have been easy for them. But they just kept on playing anyway.

 

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A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go ..¬†And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018