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!!!

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.

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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…

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.

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!