I’d never thought about it. At least not much. Have you? About water?

Well – if you’re living in Ireland, you just about might, but, largely: you open the tap and out it flows. You put a glass under the tap, wait until it’s full. You take it up to your mouth. You drink it. No big deal.

Today it day 4 post-tracheostomy time.

Pádraig gave it a go. Just a few days ago he was trying small sips of water, first with a spoon, then in very small quantities from a glass. He’d managed, but with difficulty.

Today, he finished a glass of water. (There were a few drops left a the bottom, but we won’t worry about them…) What a first!

It is really amazing to see the difference that the removal of the cannula has made to his ability to swallow. He’s getting breakfast (some creamy things like thick yoghurts), lunch (a hot meal), and dinner (another hot meal). He’s not finishing any of them – but neither would I: the quantities are humongeous. But he’s is really digging in and eats maybe up to half on what is on offer – it also depends a bit on what is on offer:)

We are still staying with him all the time. Especially when we turn him from one side to another, he always needs some time to adjust to the change, and before he find his breathing pattern again. We are learning how to help him with that. It can take a few minutes, but so far he’s always found it. Once he’s settled down and we found the best position for his head, all is well. It’ll take time for him to really get back to ‘normal’ breathing but with his head control (very very slowly but) improving, his full trachea being used again for breathing in, and breathing out, after a year and a half, with his swallowing not being interfered with by this plastic tube next ‘door’ in his trachea, with improved tasting and smelling, with all of this, Pádraig is taking a huge step towards connecting with the world and all its wonders (that we take for granted far too often) again. The past few days have been so amazing: to see the progress he is making, but also to be in a completely strange place, getting meals delivered to the door, leaving the trays outside in the “Schleuse”, the small room between Pádraig’s room and the outside world, where you put on your masks and stuff, looking out the window into other windows, seeing the rain and the storm passing over and, sometimes, into this small square that separates his room, his window, from all the other rooms, the other windows, the other patient, of whom we see shadows behind orange-coloured curtains, only sometimes a face, a bit of the furniture, the same as in Pádraig’s room.

Today, we made a list of what we need to get to the new apartment over the next week to be able to get him going. It’s a lot, it’ll be an incredibly busy week, it’ll be exciting and busy and I feel tired already, even if I don’t think about it. But it’ll be brilliant and amazing. And there will be the operation on Monday, stitching up what is left of the hole in his neck.

And then -if all goes well, and there is no reason why it shouldn’t, Pádraig will be living with us again in just nine days… after more than a year and a half.

And just a year ago, he was here in the UKE too. But how different that is from where he is today!

My head is spinning and tired as it hasn’t been for some time.

Pat and I slept in Pádraig’s room, with big echoes in my head of Cape Cod Hospital where staff were really accommodating and allowed us to be with Pádraig all day and all night. Just that this time we’re not half as worried, but full of hope and excitement, in a good way.

60 hours after decannulation, he is doing really well. He’s not yet safety over the hill, but he’s getting to the top.

Here is the plan: on Monday, he will have surgery to close the hole in his neck on the outside – it already closed by itself on the inside. On Thursday, most if not all of his ‘stuff’ will arrive at his and our new apartment, including lifter, bed, etc. We will get everything fixed up over the weekend. On Monday, he will move in with us – whether he wants to or not:)

There are a few questions about the days in between, but they’ll all be answered in good time, I’m sure.

In the meantime, several offices are helping us to organise 24 hour care for Pádraig at home. 24 hour care. Around the clock.

These past days have been the most un-nerving, the most stressful, but the most wonderful days in my life. Things are happening at lightning speed.

And Pádraig’s cannula is out of his trachea for 60 hours now. 60 hours.

You couldn’t believe how incredibly wonderful it is to hear him breathing in and out, in and out, in and out, during the night, calmly. And how incredibly wonderful it is *not* to hear the monitors, alarms, *not* to check the ‘vital parameters’ non-stop, worried. Worried? What about!

60 hours. The first 60 hours of many more to come!

Out.

Can’t believe it.

Back in UKE since 7am.

Will stay here with him for the next few days and nights.

It’ll take some time (and maybe some stitches on Monday) until we’ll know for sure but so far he can breathe ok with the hole in his neck closed of and the cannula removed. We didn’t expect that to happen at all. But we’re over the moon – and sooo tired.

So keep your fingers crossed, the candles burning, the prayers going, and your enthusiasm and energy floating up the stream. In the Dreamboat!

What happened today and how it all happened took my breath away. This has been one of the most amazing days of my life. If this all works out the way it looks, I’ll do something big. Any ideas?

Pádraig was in good form today. Of course, it’s all and always relative. I am sure he answered “Hallo” to me when I came in and after I had said ‘hallo’ to him. But then again, you can never be sure. Nothing is ever certain. Maybe it never was.

You have to look at the bright side. Of Life. And believe.

Two things, not directly to do with Pádraig’s situation, but connected to it, happened today.

One was that I found a concert on youtube. A tribute to Joni Mitchell. I was looking for and listened for a few minutes to one of the most beautiful albums ever recorded: Joni Mitchell’s “Ladies of the Canyon” – which will always remind me of a New Year’s Eve party in Dortmund, it’s a long story… but no-one wanted to listen to this new album I had bought just a few days ago (if you’re old enough, you probably know the feeling…). So I had to wait until mid-night when everybody had gone down onto the street to welcome the New Year with fireworks. Finally, I was on my own at this party, put on the record, and the volume to max. From the third floor, standing on the windows wide open looking down onto the street, I listened to Morning Morgantown, Big Yellow Taxi and Woodstock. – All of a sudden, I was not here, but there. For a moment. Full of hope. Strong. On my own. You don’t know what you’ve got ’til it’s gone… I wish I had a river I could skate away on… you turn me on, I’m a radio…. (To be honest, not much has changed since – I’m still listening to the music on my own:)

The other… I found a note Pádraig had written to me some time before my 50th birthday. In this note, handwritten and in German, he tells me that I was getting ‘old’ –  he put ‘alt’ in inverted commas, as in ‘old’ but not really ‘old’. He was being kind to me. So, as I was getting ‘old’ – close to 50 – he gave me some advice.

The advice was to hand in the job, buy the boat I always wanted to buy. and do what I always wanted to do before it was getting too late to ever do it: sail around the world. He had it all figured out. It would probably take a year. He was getting out of school, Laura could take some time off, Pat would get a sabbatical, Maria would be on her transition year. Someone would be able to sail away with me. Maybe all of us could go together on this sailing trip.

Of course, we never went, I never quit the job – though I managed to blow our family’s annual holiday budget sailing across from Halifax to Belfast and on to Dublin the year I turned 50. Years ago.

Today’s German Music Tip
Rio Reiser – Junimond – Live-Konzert 1990 in Stuttgart
Hab dich flussauf- und flußabwärts gesucht
What’s hot
Keep searching, keep traveling, make friends
What’s cold
To be sure
The German word/phrase/verse of the day
Der Gender-Krampf verhunzt die deutsche Sprache

Orson Welles once said that “if you want a happy ending, that depends, of course, on where you stop your story”.

What does that mean? How do you know when to stop the story? When are you happy enough to stop it?

Pádraig today had his biggest smile for a long time when Maria was talking to him. He so enjoyed listening to her talking about people, music, and life. How much he enjoys life. Normality.

Otherwise, all was quiet today. A normal day. For Pádraig. Eating. Drinking. Breathing. Going out. In the rain.

The new year has started. I am still planning. Wondering where the year will take us. Is it worth planning? Certainly not for a year.

But Socrates had a point – you could loose a lot of time fighting what exists when you’d be much better of building the new. An Saol on the Dreamboat. In 2015.

We won’t stop the story here. We’ll hang in. For the happy ending.

Today’s German Music Tip
Ulla Meinecke – Junimond (Abschied von Rio Reiser)
Rio Reiser was the singer of the German rock band ‘Ton, Steine, Scherben’, and died at age 46 in 1996.
What’s hot
Happy
What’s cold
Ending
The German word/phrase/verse of the day
Keine Macht für Niemand!