We asked Pádraig to spell what he wanted to order for desert today. And thought “fingers crossed”. First letter that got a ‘bleep’ was the “A”. Since we had expected an “I” we double-checked twice. An “A” it was. Next letter was a “P”.

Was it “apple”? Yes, it was!

Was it “apple” “something”? Yes, it was.

First letter of that ‘something’ was a “T”. Was it “apple tart”? Yes, it was.

There was a huge grin on his face as he spelled out his order for desert – check out the picture below. And check out the butterfly that kept him company! There was a grin because he knew as well as we did that the chances of finding an apple pie in Germany, never mind in Tating, were pretty slim.

Generous as he is though, Pádraig settled for “Apfelkuchen”. With “I”cecream!

Now it was up to me to get the Apfelkuchen.

The Bäckerei didn’t have it. Apparently, Tuesday is their cheese cake day. I walked across the whole of Tating trying to get a slice of Apfelkuchen in the village’s famous coffee and cake house.

Luckily, they had a slice left. One!

Before all this happened at lunch time, Pádraig had a therapy session. And for the first time since his accident, he got on a kind of a swing. He really enjoyed it and I thought that we need to get his hammock back up and working in some way.

If not in the garden then maybe in his room, involving the ceiling hoist in some way.

It’s so interesting to see how different therapists have different approaches and are trying different ways of working with Pádraig.

There is a light at the end of this road. Standing tall. Helping the Dreamboat to navigate choppy waters.

The Westerhever Lighthouse is one of our favourite spots on the north coast. It’s wild, beautiful, and really in the middle of nowhere. We went there for a walk today when it was so windy that the whole area around the lighthouse was deserted, apart from a few sheep who didn’t have anywhere else to go. Spreading my arms and walking against the wind, I almost felt like flying.

Some ‘good’ news: The Irish Times today published a letter by the Neurological Alliance Ireland, signed by An Saol and many other organisations, calling on the Government to implement adequate neuro-rehabilitation services.

Sir, – As the representatives of national charities representing people with neurological conditions, we are writing to express our extreme concern at the lack of action on tackling the “silent crisis” in neuro-rehabilitation in this country.
What we are calling for is a commitment from this Government to multiannual investment across hospital and community to deliver the neuro-rehabilitation services that are taken for granted across the rest of Europe.
Ireland is a European blackspot when it comes to neuro-rehabilitation services at every stage of the pathway from hospital to home.
Many are losing a vital window of recovery as they wait months for a neuro-rehab bed or appropriate services in the community.
The National Neuro-rehabilitation Strategy was published in 2011 with an implementation plan expected within six months.
We are still waiting for that plan over six years later.
Minister for Health Simon Harris committed to publishing the plan by June this year in line with the commitment in the programme for government. We now understand that deadline will not be met and no timeline has been given for when the plan will be delivered.
It is one year since we launched our “We Need Our Heads Examined” campaign for action on neuro-rehabilitation.
Since then, we have had more empty promises, following on from more than a decade of failure by successive ministers to address this health crisis, which is leaving thousands of Irish people each year experiencing the unnecessary burden of disability, unable to leave hospital or living in inappropriate settings and with families struggling to cope. – Yours, etc,
MAGDALEN ROGERS, Executive Director, Neurological Alliance of Ireland;
KIERAN LOUGHRAN, Chief Executive, Headway;
THOMAS LILLIS, Chairman, Huntingtons Disease Association of Ireland;
PAULA GILMORE, Chief Executive, Parkinsons Association of Ireland;
BARBARA O’CONNELL, Chief Executive, Acquired Brain Injury Ireland;
CHRIS MACEY, Head of Advocacy, Irish Heart Foundation;
RICHARD LODGE, Chief Executive, Muscular Dystrophy Ireland;
REINHARD SCHALER, Chief Executive, An Saol;
TINA LEONARD, Head of Advocacy and Public Affairs, Alzheimer Society of Ireland;
AVA BATTLES, Chief Executive, Multiple Sclerosis Society of Ireland;
KATHLEEN O’MEARA, Director of Communications, Public Affairs and Fundraising Rehab Group;
NATASHA SMITH, Chairwoman, Brain Tumour Ireland;
JAMES McCARTHY, Chairman, Spinal Injuries Ireland.

I know, it’s not really good news that a letter like this has to be written. But at least there are people who recognise that the lack of a cohesive policy and approach to neuro-rehabilitation cannot be allowed to be continued.

I read a story today about three visitors to baby Jesus who arrived just as the three kings were disappearing at the horizon, and left him three gifts. Apparently, these this visit was not recorded anywhere. The first visitor was called ‘Lebensfreude’, or ‘joie de vivre’, who left his patchwork clown-like coat with the child hoping that it might bring him happiness. The second was called Time and told him that what people feel they have so little of is not rare or scarce – they just have to remember to spend it where it is most needed. The third was full of scars as if she had been beaten up regularly. She was called Love. Giving unconditionally, not asking for any returns, being full of trust, she had suffered like no one else. But as soon as she approached the baby, all her scars disappeared and there was a beauty and a warmth that filled the manger and embraced all those present. – We all know that these three presents and the knowledge shared by the visitors changed world history.

The story was  much better told than I can do it here. It reminded me of what is important in life: Lebensfreude, Time (well spent), and (unconditional) Love.

We experienced all three today.

We went back to Südstrand, South Beach (like the one in Miami, and as ‘cool’), where one of us went riding on one of towering Olaf’s magnificent horses across the endless beaches while the rest went “Kaffeetrinken” with Pádraig enjoying half a cheesecake and half a mandarin cake. We had the full afternoon with beautiful sunshine and an incredibly strong wind. And, above all, we were together, being happy, enjoying the time together, remembering old times, creating new memories, being there for each other.

If I was 20 years younger, I would go for it. Rainer is looking for someone who would guarantee the future of Lütt Mattes, the really incredibly amazing unbelievable music venue and put in Garding, we heard tonight when we went there for the first time in years.

We’re getting up late, we go for long walks, we waste time just sitting around, we don’t really get anything done. We drink beer and Apfelschorle, eat crisps and Bratwurst. We wonder through the streets, along the beach, on top of the Deich. Pádraig is enjoying new adventures in eating and drinking, revisiting places and meeting people he hadn’t seen for a long time.

We have stepped out of our daily routine. There’s nobody coming to the house, there’s nobody we have to go to and meet. There are no meetings. There are (almost) no phone calls. It’s Saturday and we’ll be going to Garding’s one and only live music pub, the first time since we stopped coming here when Pádraig left the Schön-Klinik in January 2015.

There are hints of happiness, a scent of good times.

Looks like we’re having holidays

The very basic core of a man’s living spirit is his passion for adventure. The joy of life comes from our encounters with new experiences and hence there is no greater joy than to have an endlessly changing horizon, for each day to have a new and different sun”
― Christopher McCandless

One of those evenings, when I can’t really find the concentration and stamina to write. My eyes are closing and there’s zero concentration left.

This evening, we had dinner in one of the restaurants we used to go to. Close to the lighthouse in Westerhever. One of the ladies working there has a daughter who went to primary school with Pádraig’s younger sister.

Pádraig smiled this afternoon. Not because something was funny but because he was happy. The weather was good, the company was good and we went for a walk in Heide’s downtown. It’s one really nice street with a few shops. And with a small stand in front of the butcher’s selling Bratwurst. We shared one. Pádraig eating Bratwurst. On the way back home, he had a few Bugles, crisps. Those flavours must have exploded in his mouth. And the texture!

Life was good this afternoon. In Heide!

I was still travelling. Four years ago. Trying to get to Cape Cod Hospital in Hyannis. Trying to learn Forever Young by heart. What was it that had happened?

Truth is: I still don’t know. Truth is: I probably won’t ever know, won’t ever comprehend. Truth is: I don’t need to.

Four years today. We celebrated it.

“It is the experiences, the memories, the great triumphant joy of living to the fullest extent in which real meaning is found. God it’s great to be alive! Thank you. Thank you.”
― Jon Krakauer, Into the Wild

Some time ago, someone I’d never met sent me the name of an occupational therapist specialised in neurological rehabilitation in Garding (!), just a few kilometres from here. Pádraig had an appointment there today and it was fabulous. We agreed two long sessions per week for the next few weeks.

There was me, writing about Pádraig’s journey. About our visits to Rainer and his pub in Garding with the live music sessions on weekends all year ’round. Someone, with family in Tating, and having worked in Garding, reads this and makes the connections.

You can say what you will, this would not have happened without the internet, the web, and people ‘talking’ to each other – even if they never meet in person.

We are planning to celebrate tomorrow. We’re not quite sure yet how, but we’re getting ready for it. Who’d ever have thought we’d get this far?

“The trip was to be an odyssey in the fullest sense of the word, an epic journey that would change everything.”
― Jon Krakauer, Into the Wild

There was an article in the Sunday Independent newspaper apparently today (talked about on the radio) describing how residents in nursing homes who were continent became incontinent because there were no carers who would bring them to the toilet when they needed to be brought. That fits in with our experience of the use of medication to regulate bowl movements of persons in care so that they fit into the time table of homes and the turns of the carers.

It beggars believe, but this is how institutions work: the military, convents, prisons, nursing homes and hospitals. Even home care. People in these institutions and dependent on that care have to adapt to the rules and procedures and routines of the institutions and the carers.

It beggars believe.

We had a brilliant Sunday today. Slept in. Late breakfast. Kaffeetrinken beside the sea. Early dinner. A short movie. Early night. The way we wanted it. It’s hard to believe that something as ‘normal’ as this is not a given for all, and wasn’t for Pádraig, for a long time in his life…