This is just such a great line. From such a great song.

In case you haven’t seen it, watch the Chattanooga Choo Choo (from 1941) with the full Glenn Miller Orchestra, topped by the Nicholas Brothers’, Tex Beneke, Paula Kelly and the fab Modernaires. And then tell us which scene in your opinion is the most outrageous one!

 

Gotta keep it rollin’ is such a great line because it captures the meaning of life (no, it’s not 42 – as the Hitchhiker’s Guide to the Universe is erroneously reporting).

Another beautiful day. Check out the lads on the beach in Dollymount. Walking on water (with their bike:). Where else in the world would you want to be on a day like this?

Shovel all the coal in. Gotta keep it rollin’.

PS: Thanks for the great company in Dollymount today, the brilliant home made ice cream for Pádraig, and to the two visitors who came in tonight to see Pádraig. We had a full house and that’s the way he likes it to be. Living. Life. In company.

He didn’t win it. A good friend brought it to the house for Pádraig to see what one of his ‘old’ pals has been up to. After the Leinster win, just a couple of matches away from the All Ireland! How cool is that!

It had slipped my mind during the week, with so many things happening. It has been one of the most difficult weeks, one where I questioned what I was doing here. What we were doing here.

Next week, we’ll have a meeting with the HSE, following up on the shattering phone call of last week. What will be the outcome of that meeting?

I don’t think, I have met anybody who wouldn’t have been surprised and appalled about the lack of neuro rehabilitation we have encountered. What you would expect is the ‘system’ offering Pádraig every possible opportunity to recover whatever he can recover with the best possible support. They tell us they don’t have the resources. They tell us this is the way the system works.

Is anyone up for change? Not pity. Real, radical change. Because that is what Pádraig and so many others like him need. Now. They have lost enough. It must be their time now to win!

I’m on my own with Pádraig this weekend. No carers (none available).

Panic stations?

To the contrary.

Here is Pádraig moving a snake across the screen using his left eye.

 

Maybe inspired by that colourful snake, I’ve been dreaming for the first time in a long time.

Could Pádraig and I finish the camino we started over a few years before the accident? The last, say 100km? Would the ground be ok for a ‘standard’ wheelchair?

Should we go to the Fleadh Cheoil in Ennis?

What would it be like to be in Leitrim for a while? Darkness in the night. Incredible sounds and smells during the day. And the nothingness of land around the cottage lost in time.

What if our day was not structured by the arrival and the departure of carers we cannot leave alone with Pádraig, therapists costing a small fortune (the HSE have stopped physio for Pádraig), and deliveries of supplies?

What if we were on the road to somewhere? Moving to different places? Staying for a couple of days and then moving on? Exploring the world?

Leaving the panic stations where we’re looking for something that ain’t available. Instead floating down the stream. On the Dreamboat.

I’ve been learning English through music. I’ve never stopped. When I finally understand the lyrics of an English-language song, its like as if I was listening to the song for the very first time.

I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail
I believe in angels

Good night!

When will we ever learn?

 

Just realised that this is the first summer in many years that I’m spending at home. A whole new feeling. The really long hours of daylight, the cold summer days, the lush vegetation. It’s so brilliant for Pádraig to go outside, to have the doors and the windows open, to get the fresh air and the sunlight, to go out for walks.

This afternoon, I gave an invited talk at the UCD SmartLab Summer Spectacular about An Saol and met the most amazing group of academics doing the most incredible kind of research, all connected to assistive technology. It felt like the beginning of a beautiful new friendship with people who are not just experts and practitioners in their fields, they are also so incredibly motivated and enthusiastic about what they are doing. They “share a commitment to creative technology innovation for real social change.”  Thank you to the fabulous Prof Lizbeth Goodman for the invitation and the opportunity to spent some time in the company of some real special people.

They could be, maybe they are, Dreamboaters!

Two significant things happened today.

Focusing on the important one: We are getting help to push the An Saol Project up to the top. This is where it needs to be. A big thank you to those who are helping to make this happen. You are the Dreamboaters. And it floated like a dream. A sign of things to come. In the morning when we rise.

Da dadadada dada da da. — Pádraig —- Colours

Someone told me I was trying to do too much, I should make sure to look after ourselves (and myself), that An Saol would happen, sooner or later, and there was only so much one could do. Relax, they said.

Relax. Imagine.

What kind of impression was I giving? What did I look like to them?

A nervous wreck, tired, unbalanced, and a bit manic?

Is this all a bit too much?

How do you expect someone in my situation to feel and to be? I’ve never been the most relaxed, laid back, let-it-be kind of person. But what do you do and how do you live in the most extraordinary circumstances?

Relax?

Brendan O’Connor summed it up his Opinion piece in today’s Sunday Independent. (Click on the picture below to get to the full article or just read two quotes from it a bit further down.)

But there is a plague of heartbreak around this country among people and their families who have had their lives ruined by accidents and accidents of birth and accidents of fate. And those people work so hard to try and not let these things ruin them. They draw on reserves of love and the human spirit that most of us can’t comprehend. But the State and the system ruins their lives all over again. And they are bamboozled at every turn by doors closing in their faces.

The world deals some people a shitty blow and all too often the system then kicks them in the face all their lives. It’s a massive, out-of-control broken system that wastes money at every turn.

I know you shouldn’t wash your dirty linen in public. But here you are. I am so annoyed at my family. Last week, not sure if you’ll remember, I got a lesson in how to make the most delicious wholemeal bread. The two loafs I made under strict instruction were absolutely beautiful. Today was my turn to do it all on my own. Everything was in place, including the recipe. What did my family do? – They went out to the shops and bought bread, “just to be on the safe side”. I mean – are they for real??? Have a bit of faith!!! — In the end, today’s loafs worked out perfectly and the ‘shop bread’ went into the freezer.

Pádraig had two friends visiting him tonight. Together, we watched the first half of the European Soccer Final, before it all got too late and Pádraig had to go to bed. Portugal played brilliantly and deserved to win – for some reason,, I had not sympathy for eh French team…