This is Semana Santa, holy week, and almost every town in Spain has their processions. Every night of the week. They tend to be really serious and a bit dark in Castilla, slightly exaggerated in Andalusia, and – as we saw tonight in Blanes – maybe a bit too matter of fact in Catalunya. It was this band of Roman soldiers marching through every street of the town centre, pretty swiftly, probably in search of Jesus. When he, if I remember correctly, was having dinner with his friends.

The random pictures below show a little of what today was like: a full moon at night on our way back home. Empty plates in our favourite Blanes Bar where the waiter had spent the first four years of his life in Düsseldorf and is quickly becoming our best friend, proudly practicing his German with us. Barrels of ordinary wine, sweet desert wine and absinthe in a supermarket that has tons of plastic bottles ready to be passed on to customers who want to buy that stuff by the litre, starting at €1.45. Lunch under blue skies in a beach restaurant. And, finally, a note around the hotel telling guests that they will have to pay if the ink from their new tattoos should destroy the bed linen; we haven’t seen anyone with a tattoo in the hotel so far, but maybe clientele changes in the summer months?

Amongst all the excitement of today, the best moment was when an elderly lady with a  yellow ribbon (showing her support for the catalan prisoners) got to talk to us during the Roman Soldiers’ march through the town. She was really taken by Pádraig – but, in a very strange twist, exclusively by the size of his feet. Size 50! Unbelievable. But no reason to despair. There is this shop in Barcelona…. and then she gave us directions I’ve sadly forgotten. It was so nice, so normal, and so unexpected. The size of Pádraig’s feet. In terms of making contact with Pádraig, this was a resounding first!

Temperatures went up to 30o celsius today in Spain, apparently. Up here in the North, though, almost 100km North of Barcelona, in Blanes, they hardly reached 20o.

In other words: it was a scorcher.

After the usual into and out of the airplane craic, we had to wait a few hours in Barcelona airport to catch the wheelchair-friendly bus that was going to take us on our 2 hour journey along the scenic route of the Costa Brava to Blanes. And look at that bus! Out of nowhere came a ramp that lifted Pádraig up in the air and across to his seating area in ‘normal’ bus where they just had removed a couple of seats to make space.

The best thing about the day was our room in this hotel that is separated from the med only by a road that you don’t even see from the window. Check it out. We don’t have just ‘sea view’, with have double sea view!

After a nap on arrival (after all we had got up at 4am to catch that flight), we went for a walk and ended up in one of our favourite bars.

For 20 euro, the three of us had tapas and a few beers making us some of the happiest people on the planet. Pádraig so enjoyed the walk along the promenade, the sun, the people, the food and the sip of beer. It was fantastic!

Finally, and to top it all up, guess from where I am writing tonight? Correct! Sitting on the top floor balcony overlooking the promenade, the lights of the town, and the mediterranean!

We’ll be getting up at 4am tomorrow. That’s the bad news. The good news is that we’ll be going to the airport to catch a plane to the sun.

We’ll be heading off to Spain, North of Barcelona, for Easter. As we always (well, almost always) did. What if not that is normality? When we were told about this life not worth living, this ‘intolerable’ life. this life not worth any further ‘investment’ because there was no ‘return’ on that investment? I mean, eat your heart out….

In the meantime, I had this thought. It’s not really funny. But it is curious.

You all know about the waiting lists for everything in the health service, even – or especially – for children. Over a year for scoliosis treatment, more than two years for speech and language therapy. Often more than 2 years for rehab.

Now, the current proposal for legislation on abortion in Ireland is that it will be legal within 12 weeks – if the Irish people decide to take out of the Irish constitution the 8th amendment in a referendum to be held this coming May.

My thought was: how on earth will the Irish health service deliver abortion services within 12 weeks? If they cannot deliver the most basic health care, life saving, services without year-long waiting lists?

Rome was not built in a day, opposition will come your way. But the hotter the battle you see, is the sweeter the victory.

When I heard “You can get it if you really want” by Desmond Dekker on the radio today, I thought that someone was doing magic and had sent me this song. Had sent us this song, at a time when I felt a bit discouraged and resigned.

Persecution you must fear. Win or lose you got to get your share. You’ve got your mind set on a dream, you can get it though hard it may seem now.

But then – this is how the world goes. Not the way you want. Not at the pace you want. Not under the conditions you had expected.

Really, if that Stormy Daniels interview doesn’t cause a revolution, if Emma Gonzalez’ speech at the March for our Lives doesn’t begin an uprising but provokes former US Senator Rich Santorum to say that rather than protesting the kids should learn CPR – what chance have we got to change people’s hearts and minds about affording a life to those the health system has written off – more often than not based on a scandalous because widely known yet ignored mis-diagnosis. (In Ireland, there is strong evidence that 60% of those diagnosed as being in a persistent vegetative state are, in fact, conscious.)

We keep going, anyway. And we’ll try. Try and try. Try and try. And we’ll rise and we’ll succeed at last.

There was a moment when I thought I had lost everything, well – almost everything, in my life. My job, my friends, my life plan, and, of course, Pádraig. My independence. I thought, no matter what happens to you, you are in charge and you can decide what to do next – though not if all of a sudden there are huge responsibilities put upon you and when people depend on you. In that case, taking decisions for myself had to come second to my responsibilities for others, my family.

Then I thought what life would be without these responsibilities. Without looking after those, as best as I could, who are closest to me. I realised that I depend as much (if not more) on those who took away part of my independence, my liberty, my life plan, – as they depended on me. Without them, what sense would my life make?

You could call that a dialectic relationship, between a person who wants to be the independent captain of their fortune and the person who realises that without others there is no fortune, content, or happiness. – Makes me think of Christopher McCandless waking “Out of the Wild” where he had tried to become stronger by depending on nobody, realising that “happiness is only real when shared“.

Pádraig went to visit his last surviving grand aunt this afternoon. Two of his great friends visited him later and shared with him their latest news. They brought biscuits and cool-dude attitude. I wonder how they feel being with Pádraig. What they think and how they relate to him.

I went for a 24k ‘run’ and just about made it home. There’ll be a 28k run next Sunday and a 32k run the following Sunday. No idea about how that will be possible. But I will try.

Half of Pádraig’s carers will not be here this coming week. The idea of going on holidays in ones and of avoiding overlapping holidays has not gained ground yet.

Heard from a source in the HSE that the service agreement will be signed next week. Fingers crossed.

We did what thousands of people did today in Ireland: we enjoyed the sunshine and near-mediterranean temperatures consuming large quantities of fresh home-made Italian gelato. It was magic!

In the evening, we went to the month’s mind mass for our friend Louise, whose 60th birthday it would have been today. Louise remains, and always will remain, with us and especially with Pádraig.

It’s hard for Pádraig to lift up his leg from the ground up when he is sitting in his chair. Try it out yourself and you’ll find out what I mean.

It’s quite a bit harder for him to lift his leg up from the ground in stages. 1-2-3 going up, and 4-5-6 going down. Try it. It’s hard.

Yet, this is exactly what he did today. Not just once or twice, but a few times. For the first time ever. Another first.

As if that hadn’t been enough, he started to move his arms (almost) by himself when he was using the arm trainer in the MOTOMed. A little bit more than a year ago, we had a discussion with a few important people telling us that using the arm trainer would damage Pádraig’s shoulders.

Sometimes, it’s better to question what important people are telling you. And sometimes, you’re better off ignoring what they’re telling you.

Why something that seems ‘bad’ can, in fact, be brilliant news.

The Barthel Index is a scale used to measure performance in activities of daily living (ADL). Each performance is rated with a given number of points. It uses ten variables describing ADL and mobility. A higher number is “better”.

The ten variables addressed in the Barthel scale are:

1. Presence or absence of fecal incontinence
2. Presence or absence of urinary incontinence
3. Help needed with grooming
4. Help needed with toilet use
5. Help needed with feeding
6. Help needed with transfers (e.g. from chair to bed)
7. Help needed with walking
8. Help needed with dressing
9. Help needed with climbing stairs
10. Help needed with bathing

You don’t have to be an expert to realise that Pádraig needs help with all of the above. And that he will score low using this index. Yet, it has recently been used to describe how he is doing.

And here comes the surprise: even the very idea of using the Barthel Index to capture Pádraig’s condition would have been completely out of the question not that long ago and has never been done. Initially, the matters to be addressed had nothing got to do with ‘activities of daily living’, they were much more serious. So this is a first.

Because earlier, what doctors used to describe his condition was the Glasgow Coma Scale (GCS). And using this scale, he scored – initially – the lowest possible score, working his way up, slowly.

The lesson: things that initially may sound negative can highlight brilliant developments if put into proper context!

Two months ago, I signed a service agreement with the HSE, following more than a year of negotiation and work, having received the official go-ahead from both the Minister of Health, Simon Harris, and the HSE. I have been trying to find out when the HSE will sign it or whether there is anything that is delaying the start. The answer to my enquiries was that it hadn’t been signed yet. – With the best will in the world, I fail to understand this. Do you?

I have decided to work on a monthly programme with Pádraig, with monthly goals. And focus on particular aspects of his rehabilitation and recovery, like developing particular motor skills or muscle groups.

And, I will try to stand Pádraig up every day not in his bed but in the standing frame. A bit more challenging. But challenges are there to be overcome. And they will be. And so will he and ourselves.

We shall overcome. One day:)

You know this game where two players throw a ball at each other with a third player between them trying to catch it? It’s called ‘piggy in the middle’ and that’s what we played this morning in München’s Central Station with the lift. We were between to floors and each time the lift stopped at our level it was either bringing some stuff up or bringing some stuff down. It was never empty. So I run up the stairs and brought the lift down where Pádraig was waiting for an empty lift to arrive. It would all have been fun, if there hadn’t been a snowstorm in -4oC and if we hadn’t just got up at what felt like the middle of the night to catch a train to the airport.

Once we had literally highjacked that lift from the various shopkeepers and cleaners transporting their ‘stuff’ up and down, we made it to the platform where we discovered that this line was not just going to the airport but also to Unterföhrung where thousands of employees work for Deutsche Bahn. Meaning: it was packed. Really packed.

In the end we made it, tired but happy to be back after this long weekend adventure.

There is stuff you’d never think of that becomes routine travelling with Pádraig, like beds that are way too short, beds that are so low that transfer from bed to chair becomes very tricky (there are, of course, no lifters), doors are too narrow, lifts to small, some people are extremely helpful, some are utterly obnoxious.

Does that sound like life to you?