Last night, Pádraig decided to put us to the test.

His oxygen went down and the heart beat up.

Over two hours, we tried what we could think of to slow down his heart and get the oxygen up. Eventually, we managed. We staid calm and Pádraig managed.

So today, we took it slowly, got up late, Pádraig staid in bed, no MOTOMed, no walk down to Tonndorf – we were just taking it easy. And it seemed to have had the effect we had been looking for. Tonight, we’re all a bit more relaxed, less on the edge. Pádraig’s heart beat and oxygen levels are almost back to normal.

I don’t know about you, but sometimes I think about myself that I’m a bit “schwer von Kapee“. Sometimes it takes me a while. To understand. That  I got a great teacher.

He taught me to be patient. He taught me to be grateful for the small things in life. He taught me that people have to come first always, and second and third, and only then the things we think we cannot live without. Caring for others. Realising that this doesn’t make us loose time, but that you become a happy, friendly, balanced person for it. Yes, change take time. But change is possible.

It was a happy day today. The family was almost complete. In one place. We had a sense of life. As it happens. Together.

 

 

What do you think when you think about Friday?

The Late Late Show? Not really. But then, Kodaline are on…. And the very first guest, a celebrity chef, says he’s in Ireland because he met his wife in the Conradh…

I’m watching this, trying not to fall asleep, trying to write, trying to remember what happened today.

The day started like no other day so far: I could see the sun rising over the horizon, there was a blue sky, and snow on the terrace glittering, reflecting the light. I had to go back to the Schön-Klinik to pick up some papers. I met some doctors: a young one who immediately asked how Pádraig was doing; a more senior one who was focussed on the paperwork; and some of his great therapists. It was a strange visit. This is where Pádraig staid for more than a year. Unbelievable.

In the afternoon, Maria arrived. Usually, he relaxes around lunch time. Today, he didn’t close an eye, trying to stay awake, not to miss the moment of her arrival. It was great for us all to see Maria again.

And now: we’ll rest trying to gather some strength for the days to come. Good night. Sleep sound and well.

And now: I think I’m dreaming or asleep. Jesus Christ Superstar with GoGo-Girls dressed in tiny red “dresses”. On the Late Late.

Listening to the news realising it’s no use. It’s desperate: war, murders, “only” 400 people on trolleys.Today.

Still looking for someone to work 6 hours or more in Hamburg to help us looking after Pádraig.

There was this person on the news tonight who couldn’t leave hospital because there had not been any money to pay for his home care. Here, there is the money, but there aren’t any people to take it. What a crazy world.

What had I expected after yesterday? Days like that cannot be repeated.

Pádraig was exhausted and a bit “under the weather”. But I still feel this vibe, the relationship, the energy – all of this stuff that makes me impatient. I find it so hard to wait for all those exciting things that are going to happen. Can’t wait to drive Pádraig through Hamburg (and on to Alaska). For hm to visit and see his friends.

It’s not going to happen tomorrow but I can see it on the horizon.

The days are getting longer, there’s spring in the air, there’s new light, new energy, new life.

And the wide open horizon is waiting for us.

In the meantime, my two and a half days of home alone are coming to an end in about half an hour. It was some experience. But I know we are better together:)

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:)