This is when Pádraig should be home. This is when our two daughters and I were to take a few days off together. – Neither of it happened.

Now you could be really devastated, sad, furious about this. Late last night I was, for a moment.

This morning, I reminded myself of that decision to look at the bright side, not at the dark side of life. Because resilience, believe in the impossible (nobody has done this before), achieving the unachievable is what makes a Dreamboater different.

What saved the day was the visit by very good friend dropping in some very nice and healthy food – and a plan to do a triathlon next year.

Next up. Christmas.

I learned a new Irish word a few days ago: an meitheal.

It’s not just a word, but a way of life, in a way. The word describes a long ancient tradition in the West of Ireland: getting together to achieve something that one person by themselves could never achieve.

And it fits like a glove what I see An Saol to be: an effort that is indispensable but none of us could take on by themselves.

Pádraig had his first Irish EEG today in St. Vincent’s Hospital. We don’t know the results yet but believe there was no problem – otherwise we assume they would have told us straight away.

Upon his return, he was transferred to a new ward, St. Bridget’s, which reminds me of Downton Abbey (the early episodes) – don’t even know why… The NRH decided a few days ago to close St. Patrick’s ward (instead of St. Bridget’s). The whole moving around business is pretty stressful for Padraig and I’m sure he’s wondering where on earth he is. Good thing is that the nurses that looked after him will continue to do so.

Some news on the building front too: today, the hoarding was removed and a few people came in to start working on the snag list. Not finished yet, but, with a bit of luck, we’ll be getting there (or almost there) before Christmas.

Finally, I met a freelance journalist this morning to discuss the circulation of a petition to candidates – it’s almost ready to go!

Still in the hospital, but planning to head home tonight to “planchar la oreja” in my own bed. Nurses and carers really tried very hard to make me feel as comfortable as possible, but chairs are chairs – and Pádraig is considerably better tonight, though still a bit edgy.

This morning, Pádraig was sent to St. Vincents for a CT in this incredible ambulance.

It was really state-of-the-art. I had to think of the ambulances in Hamburg where the lads had tremendous problems first fitting Pádraig on stretchers that were definitely too short and the trying to close the back doors pushing in his feet in and his knees up so that he’d fit in. My only explanation for this was divine intervention…

Tomorrow lunch time, he’ll be off for an EEG to Vincents.

Loads of developments around An Saol following the volunteer meeting last Monday. I will meet a freelance journalist tomorrow morning to prepare a pledge for candidates in the upcoming elections to support appropriate services for persons with severe brain injuries and their families.

Some volunteers are setting up a policy planning meeting with an organisation that specialises in advising campaign organisers for early in January.

A third group is investigating issues around the non-ratification by Ireland of the UN Declaration on the Rights of Disabled Persons.

Here is what Germany has done.

Several hundred pages of an Action Plan to realise the goals of this UN Declaration.

Inexplicably, the Irish Government has not ratified this Declaration. It has not even managed to come up with a *draft* implementation plan for its own “National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011-2015”. Instead, as reported recently on RTĖ, a government minister has managed to push off the funding list neuro-charities and to push in a charity from his local constituency instead – against expert advice, it seems.

You know what happens when you’re cleaning up your house, trying to de-clutter, getting organised. You come across things you didn’t even remember you had. You realise that you have all these bicycle pumps you never found when you needed them. And then you have to make decisions about what it is you’re going to throw out. That’s the difficult part. Because you never know – you might take up gardening again and will need all this tangled up green-net to protect your lettuces from the slugs.

Cleaning out our front room, still stuffed with bags and boxes, to get it ready for the Christmas tree today was even more difficult. Because I didn’t so much come across my own stuff, but Pádraig’s – the cycle bag he had used on his ‘giro’, the togs he had worn when winning national competitions, the shoes of his Central America trip. Realising that he won’t ever use these again. I did the natural thing and packed them all up neatly and put them under the stairs where they always had been and where they belong. We might still try the Camino again one year. Together. Who knows!

A bag Pádraig got made up to promote his podcast. There were also fridge magnets, buttons, and coffee cups!

Tonight, I’m in the NRH beside Pádraig’s bed on a comfortable chair, with a few blankets and soft(-ish:) cushions. Pádraig wasn’t very well today. The medication to control his uneasiness worked but not yet enough to make him comfortable. And I thought that knowing I was beside him might make it easier for him to get through the night. As Linda Martin would say: Why me? I look at you and I get to feeling – Why me? (Why me, whooh) To tell you the truth, Pat had been here all day while I was trying to clean up some of the mess in our house. So, fair is fair.

Today, there was a really nice article in thejournal.ie about Pádraig, An Saol, and Pádraig’s treatment in the NRH, which captured a quite complex picture with beautiful strokes in a very clear, inspiring, motivating, and extremely positive forward-looking way, I thought.

http://www.thejournal.ie/padraig-schaler-brain-injury-2503823-Dec2015/

This morning, I managed to check out An Saol’s office in Carmichael House. It’s great and provides lots of room not just for working there, but also for meetings (Room 15!). We even have our own, old-fashioned letter box – so now you can get in touch with An Saol using a sheet of paper, a pen, an envelope and a stamp! It’s soooo 20th century-like, isn’t it?

Haven’t been in a hospital with Pádraig since last April. That was in Germany and we had a lovely ensuite double-room in the University Hospital (UKE) in Hamburg. What always amazes me, not matter where we have been, is the individual kindness and caring of people looking after Pádraig, the Dreamboaters.

I wish you a good night and will let you know tomorrow what the night was like! Sweet dreams!

Brilliant EAT Clinic (you remember what EAT stands for, right?). Pádraig will be getting a computer (or something like that) that will allow him to select between different options (radio, TV, Light, Food, Drink, …) specify what he would like, and it’ll happen.

So he can select ‘radio’, pick his favourite radio station, and adjust the volume. All at the click of a button. Isn’t that amazing?

The gadget will need to be adjusted a bit, Pádraig will have to get his head around how it works (and so will we:), but then – there are no limits to how he will be able to use this technology! It’s really exciting!

Another really brilliant and heart-warming thing happened today. It’s the patient’s Christmas party and one really caring person was telling everybody all day long that they should get ready and go down to get the turkey & ham and the trifle and some entertainment from the band. When it became clear that Pádraig wouldn’t go downstairs and that Pat and I would stay with him, this person brought up two full-blown Christmas Dinners – complete with crackers!! What a treat.

I mentioned a while ago that Pádraig had been given some medication to see would that help him to raise his level of awareness. He was taken off it last Friday week for the weekend, and just got a small dose on Monday and Tuesday. Since Wednesday he’s been off it altogether and so far there has not been a noticeable impact on his level of awareness, as far as we can see. Since Wednesday of last week he had been a bit uneasy. Since yesterday, he has been given some anti-seizure medication.

Check out tomorrow’s edition of Seachtain, the Irish language supplement of the Irish Independent!!!

The first official meeting of the charity An Saol took place this week. This is a new charity for people with brain injuries.

Reinhard Schaler set up An Saol following a bad accident in which his son Pádraig was left with a brain injury in the summer of 2013 in America.

Reinhard set up an Saol having had dealings with unsatisfactory services of the health service in relation to his son.

What An Saol intends to do is to bring together people who are interested in supporting the rights of people in Ireland with a brain injury and to protect and strengthen their rights.

The mission statement of An Saol was discussed on Monday evening and Schaler’s intention is that the charity will be governed by three main principles.:

– to provide support for the patient with a brain injury and to their family, and to raise awareness in society about brain injury.

– to set up services in Ireland for people that are currently not available for people who survived a brain injury.

– to fundraise for the charity.

In the long-term, the aim is to set up Teach An Saol which will offer suitable surroundings for people with a severe brain injury and who no longer have acute medical needs.

It is hoped that the necessary therapies will be available for them there, such as OT, Physio, Speech, Music, and counselling for the patients and their families.

It is hoped to officially launch An Saol towards the end of January 2016.

Further information can be found on the website, or you can contact An Saol via email.

http://www.ansaol.ie   info@ansaol.ie

We have no discharge date yet but will make sure Pádraig will be pulling his next Christmas cracker at home!

Tonight, the first meeting of An Saol Volunteers took place.

There was a great turnout, there was great commitment, and incredible determination. Next time, we’ll add a bit of fun to it! Maybe we need an An Saol song?

In a way, it was a historic meeting which will be remembered by those who took part as the start of activities of An Saol. – I’ll share the plans some other night!

Pádraig is back in the NRH. He is getting a small dose of medication to control some involuntary movements. Nothing major, but something he did not have to deal with before.

Tired and exhausted, but energised by the support of so many people who turned up tonight at our first meeting!

This morning was one of the best mornings in a long time.

We had a lie in, didn’t get up ’till late. And then we spent the the rest of the morning doing everything without haste. We didn’t have to go or get anywhere, meet anybody, justify anything to anybody. It was sheer bliss. Living life at our own pace.

No radio, no disasters, no controversies, no corruption, no disagreements. But really good music, time, care, and love.

What more would you want?

They are a bunch of lads from Swords who went to the Christian Brothers (except one of them) and started to form a band. They dreamt of playing the Point. Tonight they did. And they made sure Pádraig and his friends were looked after well. Really well.

Had I not been there today, I would not have believed it. The call. The text. The drive up to the Point, well the “Three Arena”, or the “Two Point Three” (for the insiders:). We were to go to the Rivergate on the North Quay.

If you’re ever feeling lonely
If you’re ever feeling down
You should know you’re not the only one ‘cause I feel it with you now
When the world is on your shoulders and you’re falling to your knees
Oh please
You know love will set you free

There were no uniforms. You just dress in black. It’ll do.

The gate opened, we were whisked in and parked beside cars that looked like they were owned and driven by stars. Turned out, the lad passing us on his scooter was a Kodaliner.

The doors were all opened widely and in we went into the empty Three Arena.

And then the band came out to say ‘hello’ to Pádraig.

When does stuff like this happen? – Love will set you free.

Then the sound check started.

It felt like a private concert by one of Ireland’s biggest bands, friends of Pádraig, in Ireland’s largest music venue.

The band and the promoter said it was the least they could do, Kodaline would always look after Pádraig and MCD Promotions said keep in touch, whatever we can do.

It was a very long day for Pádraig. And some incredible experience. The first of many concerts to come. One that neither Pádraig nor any of us will ever forget.

The energy, the love, the generosity, the believe in your dreams. There is nothing that will stop Pádraig living his life – it’s just too precious and too valuable, and fun!

Thank you to the band, MCD Promotions, and Pádraig’s friends who helped to make this happen and spent a fantastic night with him at his first concert!

Pádraig is home home tonight.

Having him here with us, being able to look after him, enjoying life together, is the happiest feeling I could imagine. There is no stress, no pressure, no fear.

And, just in case you were wondering: yes, MCD confirmed that he’ll be welcome to attend the soundcheck tomorrow afternoon, before the Kodaline concert. Isn’t that super cool?

Tonight, we also got a visit from Pádraig’s GP. She accompanied Pádraig from the day of his accident on his journey even when she was far away in Dublin, and Pádraig on Cape Cod or in Germany. It was amazing to see how well and immediately she connected to Pádraig, and he to her.

Also heard more on the progress of some of Pádraig’s equipment. Things are most definitely moving.

Life and what happens in it is always a matter of perspective. We look at the same world but we see it in completely different ways. Isn’t that amazing? Even more amazing is that most of the time, most of us don’t think about it – we just find it so strange that other people don’t get it, instead of trying to understand how their perspective changes their perception of the world. And ours ours.

The call came in today: the promoters (MCD) and the band will make sure that Pádraig will have the time of his life at the Kodaline concert on Saturday. Wow! How cool is that? Sound check! Concert! An evening of first class music! Brilliant!

Another first today. I received an email from an occasional reader who felt that I had misunderstood and subsequently misrepresented the situation about Pádraig’s home care package and asked me to correct this.

I had said that the application had not even been submitted to the corresponding HSE office – referring to the office that would take the final decision. While this is true, what I had not mentioned was the enormous and tireless effort by dozens of people who put an enormous amount of work and time into all the supporting paperwork for this application, the dozens of people who met us over the past 10+ weeks assessing Pádraig and preparing the paperwork. I also did not mention that, of course, most details of the application have been agreed by the NRH and our local HSE Home Care Manager.

So, it’s far more involved and complicated then I had described it: a home care package application has indeed been made to the Home Care Manager of our local HSE Area (this is not the person who will take the final decision). After this manager has approved it all, it will then be advanced to the Intensive Homecare Package Office for final approval by them. This is a lengthy process and involves a lot of checking on prices etc.

So, in case I made it sound as if no one had bothered to make the right application at all – that was never my intention. The process is well in hand, and we’re kept well informed of where it is at any given time.