Almost.

That word sounds a bit like failure, but in this case it’s something to be proud of. We almost finished unpacking. We almost fitted all the lights. We almost got rid of all the rubbish that is just in the way of things.

Out.

That word sounds like music in our ears. Out for a walk. Out into the snow. Out among people. Out of confined spaces with no air, no light, no wind, no rain, no children’ s voices, no traffic, no nothing but beeps from the machines or a voice saying “you’re allowed to come in” or another asking whether you have permission to visit early.

Busy.

Being busy stops your mind from wondering. Or is it wandering. It’s when I stop that I feel the enormity of what has happened. But then – is that not all relative? Is what happened to Pádraig, what is happening to us, not something that happens to many people every day?

Happiness

If someone had told me a bit more than a year and a half ago about what was going to happen to Pádraig and to us, and how we would all be, the idea of happiness would never have crossed my mind. These days have been happy days. They have also been really sad day. Is that what life is? Happy, Sad? All mixed up in the most impossible of situations?

Boxes, wires, lights, shelves… you have it. The apartment still looks a bit ‘wild’, but it’s getting more organised. We’ll finish that tomorrow!

Today, I went to a DIY Store. When I saw I sign saying: Hier kostenlos tanken, (Refuel here free of charge) I got all excited! Until I had to learn a new German word: Fahrrad-Stromtankstelle. That was a bit disappointing in one way, in another way it was incredibly strange. Imagine: your own bicycle electricity refuelling station. Where will it all end, I ask you?

One thing is for certain: there ain’t nothing stopping Pádraig getting back into the swing of it. He’s getting out of the bed again at least once a day.

Guess what we did today? We went out for a short walk in the snow! Could you think of anything nicer?

So we decided to try it out on our own tonight.

24-hour care ain’t easy on anyone: the carer, us, and Pádraig. We’re about to have our first night on our own in our own apartment. This is as good as it gets, for the time being.

But, of course, we’re much more ambitious than this. This is just the first step.

A few really outstanding things happened today: The first was when I was moving Pádraig’s arm up and down and all of a sudden felt that he was helping me, almost doing it on his own. The physio yesterday had mentioned that he had felt something in Pádraig’s arm – looks like Pádraig is getting ready to un-employ the physio any day soon!

Then, the doctor, his new doctor, arrived to take out Pádraig’s stitches. What a day! Where once was the tracheostomy, where once nurse and us introduced a plastic tube to suction out phlegm, sometimes several times a day, there’s nothing left but a red spot that will, no doubt, soon heal into a small scare.

When we got talking to the doctor, it turned out that he had heard about Pádraig weeks, months ago. About this young man who was trying harder than anyone else to get better. Fighting, struggling, dreaming, winning, believing. It floated like a dream!

And now. We’re on our own. I feel like staying up all night. Having spaghetti at 2am – whoever was on the Tecla’s blue watch will know what I’m talking about! Think excitement. Big time.

Stitches. Out. Home. Alone. Bravo!

Still trying to bring the rest of our stuff from the old apartment to the new one, unpacking boxes, assembling furniture.

In the meantime, we are getting to know some of the carers and therapists that will be looking after Pádraig. We also got a visit from a nurse in the UKE Hospital to see whether she could be of any help. She came over at around midday, having worked during the previous night. Hut ab!

All this is so new and different that we will all take some time to getting used to the new situation. The new apartment has been packed over the last few days with people coming and going, to a point where we were all looking forward to some peace and quiet, to some time for ourselves.

We decided to be care(r)-free on Friday and Saturday night. To find time for ourselves with Pádraig. 24 hour care ain’t easy, we discovered. Still looking for a new routine.

It must have been tremendous for Pádraig to get out of the hospital environment, to be in a new place, to be surrounded by so many new people. It has been pretty stressful for us, for him it must have been very disorientating. All this needs to settle down to allow us to settle down, so that we can help Pádraig to continue on his road to discovery.

There’s a tale of two journeys.

The first journey was to and out of Cape Cod. We did not know whether Pádraig was going to survive the journey. But we had decided that whatever was going to happen, we needed to be at home with the people he loved, with his family and friends. That journey was almost bizarre: the failed attempts of fitting Pádraig into a Learjet that was obviously never meant to take a person as tall as him on a stretcher, the head in a helmet, taped to the stretcher, with Pat squeezed into the back with the polystyrene box filled with dried ice and a bone on her knees. Via Goose Bay and Keflavik to Dublin.

The second journey was on Monday, leaving the hospital. Pádraig was breathing on his own, without a tracheostomy. He can hear us, react to the world around him, tell us (with his tongue) whether he agrees or not. He can eat and drink. He is having a go at finding back his voice. He can stand vertically on a tilt table. Sit in his wheelchair. He smiles a funny stuff and gets annoyed when you wake him up in the morning.

He’s come a long way between these two journeys.

Today he had his first physiotherapy session at home. Tomorrow I hope to hear from a speech therapy clinic that I hope will be able to start working with Pádraig on his speech, his swallowing, and on the development of his muscles in and around his mouth. The days here are incredibly hectic and the place is still so disorganised. But it’s brilliant.

Pádraig is enjoying it. I’m still over the moon. Still so tired. But full of energy and hope. Still traveling! Still believing. Because Pádraig does, and this is leading the way!

Never thought about it that way: Pádraig is the essential traveller, isn’t he? A truly sensational traveller!

And yesterday was his big home coming.

Today, we went out onto *his* roof terrace, to see, feel, smell the snow that was falling in Hamburg.

There will be two new dates in his calendar, forever. The day his tracheostomy came out on Wednesday, 07 January. And the day, above all, the day he left the hospital on Monday, 19 January. After – well, many many days.

He’ll move on. In the good company of his friends and his family.

Today, a doctor told me that taking out his tracheostomy had been taking a risk and that it worked. Sure, what else is life?

Still out of breath. Still trying to understand what happened over the past days. It is, really, sensational. Wouldn’t you agree?

The most depressing day of the year, Blue Monday. Today.

Yet, it’s not for us. Most definitely not

We had an ambulance man telling Pádraig: “just a few more minutes and you’ll be home”. We had a nurse giving us hugs and wiping her tears away. We had an hospital assistant giving us an extra large portion of lunch.

The view out of our living room window!

Above all, we had Pádraig leaving the hospital and joining us in a new apartment that hasn’t even got bulbs connected in every room.

We had three nurses/helpers here today, together with a lady from a supplier who had organised all the stuff Pádraig needs every day.

Had I believed this was ever going to happen? – Pádraig did. He keeps going, believing that this will float like the Dreamboat did.

The most amazing thing is that he is right. Oxygen level: 100%. There is not a hint of a breathing difficulties to be seen. Heartbeat: 67. Couldn’t be more relaxed.

Glückwünsche Pádraig! You made it out of hospital. On the dreamboat!

The number of days Pádraig will have spent in hospital when he will be leaving the UKE tomorrow, if all goes according to plan.

This afternoon, I had this thought: did anyone order an ambulance to take him home? Probably quite a stupid thought, but it did occur to me…

I spent the afternoon trying to get the apartment set up for tomorrow. It’ll be fine, not perfect, but fine.

Pádraig is managing really well and, I think, better than I had thought without the tracheostomy. Hi oxygen is back up and his heart rate back down, very close to were it was before on good days. The thing is: if you’re not using a muscle it’ll disappear. I know that from running. It has to be the same with your trachea. With your tongue, and many more muscles we don’t even think about when we’re using them every day of our life.

That’s what Pádraig will have to do for the coming months:

It’ll be a really busy day. With loads of people calling in once he’ll have arrived, getting things going. It’ll be a real happy day. Unbelievable, really. It’s what we hoped for over such a long time.

I’m so tired. My back aches. Can’t wait to go to sleep. It’s hard to think or to write or to do anything meaningful.

Two nights to go. Noch zweimal schlafen.

After that, almost 19 months of a hospital stay will become a thing of the past.

With a lot of help and support, with nursing care, helpers, and therapists, we will learn how to live outside a hospital. Pádraig will be able to go out when the weather is fine. Out on a roof terrace and out onto the street. There will be no more mouth covers, no more protective gowns, and gloves just when they are really needed.

He will have a “standing bed” (though it’ll take a while to get that built and delivered), an exercise bike, a physio table. For the next months we’ll pretend that we’re in a training camp. I will go back running (well, jogging), Pádraig will go back exercising.

From time to time we measure Pádraig’s oxygen level and could observe how it was getting better every day after the operation, especially at times when we were doing exercises with him. So exercise is not only good to keep his arms, legs, and the rest of his body in shape but also good for breathing (as all of us who ‘run’ regularly know:).

It’ll be kind of like getting back your freedom.

Leo Varadkar is on Prime Time trying to explain the waiting lists in the Irish health system. In my mind, he has the most impossible job anyone could have: Irish Minister of Health – in a Government that is planning the next tax reduction in preparation for the next election. What a relieve when the battery of the laptop died and with it the connection with Prime Time.

Today, a lot of Pádraig’s stuff arrived in the new apartment. Tomorrow one of Padraigs friends, currently on a visit to see him, will keep him company and look after him, while the other friend will help me and Pat to mover our stuff from Dulsberg to Tonndorf.

The big news today is that he told a visiting chaplain that he is more of a Bell X1 fan than a U2 fan, by moving his tongue!

Pádraig’s therapy and treatment will continue when he’ll be with us. For us, it will be a great learning experience while receiving maximum support from carers, nurses, therapists, and doctors!

Going to sleep now to be ready for the big move tomorrow!