The night Pat rang me about Pádraig’s accident, I had just given an invited talk at a localisation event in China, using clips from a James Bond movie and Adele’s song Skyfall with the incredible lyrics “This is the end…”  Since that night, I cry when I hear that song and think of that day and that night. –  Today, it was not Skyfall. It was: The Spy who loved Me and Carly Simon’s “Nobody does it better – Baby you’re the best!” Red and Green Gummibärchen.

Because good days come when you least expect them.

Today was one of those. Right now, I think it was one of the best days of my life. But I don’t want to exaggerate.

Strange thing is that it was a really busy day, I didn’t do much of the work I was supposed to do (if you are working with me, please don’t tell anyone), and things I thought would have worked out didn’t work out.

For example, despite our best efforts, despite money being available to pay people, despite having talked to several providers – we have not managed to find someone who could look after Pádraig for about 6 hours a day, some days maybe a bit longer, Monday to Friday…. It’s incredible.

So today, I did what needed to be done. Following some help to get Pádraig up, I gave him breakfast, washed his hair, organised a hot towel shave with nice smelling after shave, gave him a warm food bath (it looked so good I wanted one myself), he had physio, and a session speech therapy – where Victoria, his really young and enthusiastic speech therapist, discovered that Pádraig could chew, and chew in the ‘right’ way (there’s is a wrong way would you believe), especially when she was giving him the red and the green Haribo Gummibärchen – the ones that taste best, according to Victoria.

I told her that Pádraig was lucky to have any Gummibärchen at all, because though I had bought them for him yesterday, I had got such a craving for them last night that I almost finished them – and I’m not choosey about the colour, I like them all!

After his rest, Pádraig and I went for a walk (accompanied by the boss of the service provider who has been trying to find us a helper), found the brochure and registration form for the train trip to Lourdes in May, got back up to the apartment, and got the MOTOMed Viva2 going. Pádraig went for a record distance today! After that he had a bit of dinner and ‘Mundpflege’ for which I was a poor substitute (Pat is the specialist for this one).

Back in bed, I took out the Arnika Oil and massaged his legs. I did the simple physio I’ve picked up over the past months and then sat down beside Pádraig listening with him to one of the gorgeous Irish music CDs his friends had sent to him.

I told him that we were going to go on road trips, that the sky was the limit, that I felt I was getting good at ‘Pflege’ and even liked it, that we were going to have a good, a happy life, that it was unbelievable to see him chewing Haribos Gummibärchen, making clicking sounds with his tongue, and tons of stuff more. He looked so happy and showed off the things he can do, like in a practice session.

It all became so crystal clear: we need help, but essentially we’ll be doing this ourselves for and with Pádraig. We’re going to have immense fun, tremendous satisfaction, terribly sad moments, hilarious laughters. We’re going to have An Saol!

Nobody does it better! – We’ll just need to keep our supplies of red and green Gummibärchen going.

[Just in case, if you know someone who would like to live in Hamburg for a while and work a few hours in the morning looking after Pádraig, say 7 to 13 hours for a few months, let us know.]

I’m watching the telly. It’s Kölner Karneval. They’re showing a performance by artists in front of an audience that hasn’t changed in decades, maybe centuries. If you want to see the essence of Germany, of old, unchanged, introverted, antiquated, exclusive Germany, this is it. While the news are full of cultural integration, asylum seekers, diversity – this evening is a celebration of ‘home’, the known, there are no surprises, even after no having looked at this for years and years and years – I recognise the faces. It’s a time warp.

Talking about home – tonight, Pádraig and I are on our own. It’s a strange feeling but good in a way. I think we both know that we’ll be looking our for each other.

Earlier today, I went to a garage that is selling cars for people in wheel chairs. They’re also renting them out. My plan is to get one of them for an afternoon and go for a spin. If that works, we could go on a trip around town, eventually up to the North Sea. And then, who knows where else? (I’m thinking Alaska.)

Today’s German Music Tip
Klüngelköpp,  Stääne – Kölsche Musik….
What’s hot
Home Alone
What’s cold
Alaska
The German word/phrase/verse of the day
Kölsche Jecken und Kölscher Klüngel, die Ewig-Gestrigen

Four down, none to go.

It never happened before according to the owner who of the company who was going to organise Pádraig’s care at home.

You need 5.3 people to deliver 24-hour care to one person. They had four people lined up. The first one quit. The second was fired. The third never showed up. The fourth called in sick this morning. So things are a bit complicated at the moment…

But, there always is a but, there was another huge step forward today with Pádraig’s speech therapist. She just qualified a few months ago, is really enthusiastic and full of energy, and finds her work really exciting! It is, to be honest.

Because today, today Pádraig for the first time, another first: chewed an apple.

You should have seen it: the speech therapist put pieces of apple into a bit of wet gauze, put it into Pádraig’s mouth on the right, and then into his mouth on the left and asked him to chew. He did, no bother at all, and obviously enjoyed the challenge, as well as the apple.

She was delighted. So was Pádraig. So were we. The funny thing is: nobody had ever tried to see whether Pádraig was able to chew.

This afternoon, we went out again. To the supermarket. Isn’t it great to think that this is already part of a routine, something normal to do, after so many months in a very regulated environment where Pádraig was not allowed to go out into the green?

Today is the start of a new year. In a way.

A good friend sent an email saying that it has always been a day of hope for him. A time when the days are getting longer and nature is starting its colour parade. He said that he wished us colour and light.

It is a time of hope, of colour and light. A time for a new start with energy and enthusiasm, away from Angst, uncertainty, unbearable nights and days, horror, unspeakable loss, desperation.

We’re going out for walks up and down the road. Into the local super market. We’re trying to figure out where and how to hire a car that would take a wheel chair. We’ve started to plan a 24-hour very special train journey in May to the south of France to stay a few days in a very special place.

There is a new dawn, the days getting longer, and we are living a new life!

My head is still spinning (what’s new here, you might ask).

Well, today Pádraig, Pat and I went into a super market. One of those huge ones. We walked down the isles, looked at stuff, bought a bit of food – and felt like having a glimpse at the life most people lead.

It was a very strange excursion out of the protection of the apartment not just onto the street but into a brightly lit supermarket full of people. At the beginning, I did not look at anybody, avoided eye contact, felt really awkward. What do people think when they see the three of us walking down the road, go shopping?

It was a bit like how I think many teenagers feel: everybody is looking at them, judging their appearance, their movements, everything – and as a result they really start not just feeling but also moving around in a really awkward way.

But then I decided: this is the beginning of a new, normal, every-day life, with Supermarkets (for starters) and many more and different fun-occasions. It’ll be as busy as ever and there won’t be time to worry about what other people say, think, and see.

Pádraig liked it: going out, being amongst people, seeing, hearing, feeling, smelling – thousands of impressions we had been taken for granted.

First day when the carer left at 1pm.

I’m too tired to say how much we enjoyed the time with Pádraig. It makes such a difference to be with him on your own.

This afternoon, the doctor was here – to say that all is ok and that he taking him off most of the medication.

Can’t think, can’t write, I’m just too tired.

So good night for now – I’ll write tomorrow sit some more details!

Pat got another smile.

When she read out a story to Pádraig about someone who had stolen the heart of St. Lawrence O’Toole from Christ Church Cathedral in Dublin. Who liked the Saint so much that he robbed his heart?

Going out. In the Street. Is becoming. Normal.

There was a doctor who told us that they didn’t want … in the yard and that this was the reason we couldn’t go out with Pádraig. Makes me think Pádraig is double-lucky: back on the road and alive. With no tracheostomy @96 O2 and a heart beat so relaxed it’s almost worrying:)

Another session of physio and another session of speech therapy. No rest for the wicked.

You know, I am not sure how often I thought that you couldn’t get more tired or exhausted and than realised: yes, you can! But also: yes you can. do. whatever is in your mind. there ain’t no limits. if you can get dozens of empty plastic bottles. tie them together. and build. your dreamboat. and it floats. anything is possible.

We’re in Tonndorf now and I’ve not quite connected to the area. In Dulsberg, there were take aways at every corner: a Thai, a Döner, a German Pommessbude, a pizza place. Tonight, after three attempts, I made it into Tonndorf’s one and only asian take-away – this time I made it just before closing time at 20:30. And guess what: the stuff came wrapped in an authentic Chinese newspaper! And I’m not making this up! It was so nice.

It’ll be potatoes and carrots tomorrow. But today it was a true Chinese Takeaway:)

Another amazing day on the roof top in Tonndorf…

There’s so much stuff happening, I find it hard to separate things, keep them apart, ‘process’ them.

Without a doubt, the most amazing thing that happened today – apart from a big smile on Pádraig’s face when Pat read him out a story about Máirín de Brún – was the visit by his speech therapist, a young, enthusiastic, energetic and dedicated young woman. She spent almost half an hour assessing Pádraig – and if I had not seen it I would find it hard to believe it.

She asked Pádraig to do all sorts of things with his chin, jaw, mouth, and tongue – and there was I thinking that it was great that Pádraig could move his tongue to the right and to the left!!! He can do so so much more, like closing his mouth, moving his jaw, moving his tongue up and down his palate and a few other things as well, even holding a spatula between his lips! All ‘deliberately’, when being asked.

She also said that Pádraig’s determination, energy, motivation and enthusiasm were amazing and will make such a big difference.

The big question, of course, is why no-one found this out earlier, and why no-one started building on all these abilities before. – Although, I’ve decided to look at all the good things that are going to happen. Everything else is bad news of which I already got enough for the rest of my days.

Let’s dream, sail down the stream, believe. Let’s join Pádraig on the Dreamboat!!!

Irish Week starting this week in TCD

Shopping. Exercising. Having a bath. Listening to favourite songs. Really loud. Getting onto the Dreamboat.

A doctor who came for a visit today to see how we were getting on gave us some advice, out of personal experience, saying that, you know, what is very different, very touching, very tragic, one day will become very much less different, less touching, and less tragic. And you will be, more or less, and maybe with some exceptions, be on your own. Think about it, she said, plan it, make sure that you get sufficient professional help so that you yourselves can sustain what you’re doing. — Of course, I understood what she was saying, but I could not feel that in my heart. Tragic doesn’t disappear. Friends and family do not disappear. Maybe that is a difference between Ireland and Germany.

I’m listening to the playlist you put together with Pádraig’s favourite songs. I see him dreaming with you looking at the sky above Trinity, having fun with you at a festival, dancing like no-one dances with you through the night. How can happy music be so sad? So so so sad?

But then – Pádraig went out with Pat and one of his carers today, and arrived back with a cheese cake. Imagine: he went out to a shop!!

But then – the most beautiful Viva 2 MOTOMed arrived today – still a model to try, not his one yet – with not just a leg, but also an arm trainer. How cool is that?

But then – he got a new lifter which, at least in theory, could lift him out and into a bath. This one is tricky, and we’re not sure yet how (or whether) it’ll work, but we’ll keep working on it.

What about you? For my part, I’m getting depressed when looking at the Irish papers – not always, but too often. I know people who’ve given up listening to the news or reading a paper because they’re just uninspiring.

Bad news sell. Scandals sell. Desperation sells. That’s what news producers seem to think, and they have some evidence to support it.

Here are the headlines on IrishTimes.com, Health Section, from this morning:

• Ireland stumbles on international health service rankings
• Irish Kidney Association says all-Ireland approach could overcome staff shortages
• Kidney transplant: Owen Kelleher waited on the call for over 12 years
• Heart-breaking message from four children to Leo Varadkar
• Widowers of women who died in Sligo hospital to meet Varadkar
• Kidney crisis the latest symptom of ailing health service
• Kidney sent abroad as Beaumont faces staff shortage
• Ban on gay men donating blood may be relaxed – Varadkar
• Staff had concerns over problem births at Portiuncula Hospital
• Portiuncula sitation follows a familiar patterns
• And a last one on Hospital trolleys: Behind record figures lies much unnecessary suffering. Numbers shouldn’t surprise as figures for last month were 53% up on previous December.

Either the editors of the Irish Times online health section subscribe to the mantra that bad news sell. Or the news about the Irish health system are really that bad. Or maybe it’s both.

Whatever it is, these news are not inspiring, they don’t give you hope, nor the energy and enthusiasm you need to build and maintain a great health system – not just for the sick. But also for the healthy: to reassure them that there loved ones are looked after well, and that should they ever get sick themselves there will be people looking after them. Also for the people working in the health system: to show them their work is appreciated, to let them know they will have access to what they need to deliver good care, to show them that we support their work, to make sure they understand their responsibilities.

With the move to the new apartment and all, I didn’t have much time to think about it, never mind work on it, but I know that An Saol needs to be getting off the ground…

“I don’t know who you are, but I will find you and I will kill you.” – quoted by thejournal.ie today as one of the most quoted lines from the movie Taken.

Going up.

We’re on the fifth floor and the views are great. There is lots of light, the ceilings are high, and all the rooms – well, there’re just three of them anyway – have doors out to the balcony. The walls are round, so we won’t even think about getting any furniture – it wouldn’t fit if we tried.

This morning I went to one of Pádraig’s new doctors (he has several of them now). After just a few minutes, we discovered that both of us had grown up on Dortmund (never mind if that doesn’t mean a thing to you:) and both of us couldn’t believe that there ain’t no steel factories, no coal mines, and no beer factories no more. We were instant friends and I have no doubt that he will look after Pádraig as if he were his own son.

About Pádraig.

This afternoon, Pat read out two stories. One was really sad and I haven’t see Pádraig so sad in a long long time. One was really funny and Pat said she hadn’t seen Pádraig smiling to much in a long long time.

The funny story was about Ireland’s smoothest talkers. It started with Liam Neeson’s line already quoted, continued with Charles Haughey (the one from the recent RTE movie), Colin Farrell and Panti came next, and then, at number 5, guess who… well, you wouldn’t believe it, came Bertie Ahern, Ireland’s former Taoiseach. Pat was so surprised that she laughed out loud while reading the bit to Pádraig and showing him the picture of Bertie who is quoted as saying enlightening stuff such as “If hindsight were foresight, there wouldn’t be a problem”. (They should add the person who introduced the “Irish Passport Card” – an ID card that if it was called just that would not be accepted in Ireland.)

What was really significant was that Pádraig followed two quite complex stories for more than half an hour each and he was really moved by each of them – though in quite a different way.

Today, we also had a visit from Pádraig’s new speech therapist who will work with him three to four times a week, alongside the up to four hours physio he will be getting. We’re also expecting the arrival of his very own Viva la MOTOMed during the week, this time there’ll be an arm trainer included. The insurance company ok’ed today an extra long 2,30m standing bed which will take at least four weeks to be especially manufactured for him.

Yes, my head is spinning. Anybody’s head would. But it’s great and the way to go! Smooth…