Here’s something I wrote earlier, in fact last night, as the time of our departure today two years ago was approaching.

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I can’t sleep.

Today, exactly two years ago, I couldn’t sleep either. Because Pádraig and I were going to leave Dublin in an air ambulance really early in the morning to get treatment for him in Germany. Treatment Pádraig could not get in Dublin within a reasonable time.

There was a therapist in Beaumont Hospital who had got up in the middle of the night to get Pádraig ready for the trip. There were nurses saying goodbye. Holy Water was shared and prayers said.

Today, we’re back in Ireland, knowing that if we want to stay here it’ll be us who will have to organise the therapies Pádraig and so many other persons with severe ABI who want to live at home so desperately need.

We will have to be the change we’ve been waiting for.

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Two years on, the pain is still there and I have this feeling that it will never go away.

But two years on, Pádraig is with us, he has decided to live, he is taking part in life. He enjoys food, company, humour, and music. He has touched hundreds if not thousands of people around the world and is our inspiration. He is at the helm of the Dreamboat.

 

x-g-v-p “ja”

u-d-q-d-w-a “ja”

e-r-t “ja”

This is what the day was about.

Pádraig used his right hand to hold a switch. When he pressed the switch a pre-recorded voice said “ja”. So when I asked him to spell “Pat” (I didn’t want to start him off with “Reinhard”:) by pressing the button each time he heard the correct, next letter of that name – he did.

Isn’t that absolutely fantastic?!

We’ll keep practicing (inspired by the incredible “C” foot switch exercise) and the first attempts of spelling made in Pforzheim.

There was also a big meeting between HSE nurses, managers, and therapists, and the NRH specialists looking after Pádraig. We were invited to join this meeting for its second part. In essence, an application for a home care package is about to be completed and considered. This package, if approved, will provide for a certain number of hours of care per week for Pádraig. They are also considering to provide equipment. This is the good news.

Can’t wait to practice a new word with Pádraig tomorrow.

The funny highlight of Pádraig’s day – he had a huge huge smile on his face – was when an OT asked him whether he was having her on. When she wanted to find out from him what was going on!

She had spent quite some time with a switch under “his left foot” asking him to press it once for ‘yes’ and twice for ‘no’ which worked out quite well until Pádraig decided not to lift his foot up from the switch anymore.

He thought that was hilarious. What a laugh!

It all happened during his music therapy session when a number of therapists, supported by quite a few student therapists, tried to engage Pádraig with songs and talk. It worked but parts of it were so staged that Pádraig didn’t do much more than playing along without great enthusiasm.

Until he had some unrehearsed, pure fun. An Saol!

Church in Church Street.

We used to go there with Pádraig years ago to Irish Mass. Today we went back and I guess we’ll be going there on as many Sunday’s as possible.

An elderly lady with a shopping trolley squeezed in to sit beside Pat – though the church was almost empty.

When mass was over, she asked what had happen to Pádraig, how old he was, where it had happened, where did he live, and that it was a terrible day, a terrible day, outside, and that he was lucky to be alive.

She asked and said all this a few times, accompanying us back to the car, through the wind and the rain, with her shopping trolley. You probably know her.

If you don’t, you’ll recognise her next time to go to church in Church Street. Sundays, 10am, Irish Mass. She’ll be sitting there, squeezed in, beside Pat.

HomeHome for the weekend. Day 2.

Don’t know how the day passed. In an instant.

Nothing really happened. It was just nice and relaxed.

There are so many things that have to be done here in the house before everything will be back to a ‘normal’ household, but all of that will happen. It’ll take time but it will happen. And tonight, I’m sitting on our kitchen table! I know it doesn’t sound like much, but it’s the first time in many months. It’s not even dusty!

We’ll have to organise Pádraig’s room and his stuff again, as we had to do each time he moved hospital or apartment. A health website counts moving house amongst the 5 most stressful situations in life (with death of a loved one, divorce, major illness, and job loss). A BBC site asks “Is moving home one of life’s most stressful events?” – I don’t know anyone who has “moved” as much a Pádraig did over the past two years and a bit. It has become part of his life, I guess. (And by far *not* one of the most stressful ones, I can tell you for nothing.)

We’re settling in. He’s settling in. Even though this time it’ll be just for the weekend. We’ve started to put things back into their place. We even discovered how many uses a high-tech hoist can have!

It has been a good day today. – Except for the news that one of our young friends with an ABI had to return to a nursing home, hopefully only for a very short while.

All of a sudden the sun came out. Wenn Engel reisen (when angels travel), my mother would have said.

Instead of going straight home – yes! Pádraig is homehome for the weekend! – we decided to go to the Botanic Gardens. If you’re not from Dublin and haven’t been there: put it on your list for your next visit. The gardens are absolutely beautiful, full of colours especially in the autumn, gorgeous herb gardens, and one of the most spectacular green houses on earth.

It was like walking through a jungle. Kind of an organised jungle though. Like the way the German countryside is like Leitrim, only organised. There’s something missing. The wild bit. The bid you can’t predict. The adventure. The chaos. The surprises. The lack of control.

I was thinking: Pádraig’s life has been like Leitrim, like the real jungle. Not like the German countryside, not like the Botanic Gardens. And I was thinking that he’d probably want it to continue like that. And as much as that is possible, that’s what I would like to help him with. He’ll direct us, he’ll show us the way. We’ll just have to go along with him, moving some ‘Stolpersteine’ out of his way. No more.

We had to leave when the installer arrived this morning to fix the ceiling hoist that I had intended to proudly present to our visitors yesterday. By the time we were ready to leave, it was too late for Pat to come along and we had to call a friend who dropped what she had to do to sit in the back of the Doblo with Pádraig while I was trying to find the shortest way around the world-famous Web Summit that was blocking the whole of Dublin’s traffic.

We had a brilliant evening yesterday and a good night’s sleep. The enormity of what happened yesterday hasn’t quite sunk in yet. And tomorrow, Pádraig will leave the NRH again to stay with us for the weekend!

He had a busy day today. And a really eventful one as well!

Having made it safely back to the NRH, he had a quick breakfast and then had an appointment in the seating clinic where his new wheelchair had arrived. It’s Swedish made and has a great look and feel. We’ll test it over the coming days, especially at home to see whether it’ll fit through all the doors.

But the highlight of the day, of the month, was, undoubtedly, the OT cum SLT session where Pádraig did his tricks with a switch that, when pressed, makes a sound. The OT decided that “his left foot” was the one to do the work.

First: press once, press once, press twice,… and each time he ‘delivered’.

Then: press once for ‘yes’, press twice for ‘no’ … and he answered all the questions correct.

Finally: the OT said different letters of the alphabet, one every five seconds. Each time she said ‘C’, he had to press the switch. And each time he did it!

Isn’t that unbelievable!?

With some more practice and consistence, he’ll be able to spell words! “C” – what a wonderful letter!!!

This is a test, test, test, … 1,2,3… 1,2,3

I remember this from concerts during sound checks.

Today’s test was slightly different. And we passed. “We” are the dozens of people involved in getting Pádraig home home.

About half a dozen of them arrived this morning at around 7am at the house to make some last fixes, to clean in and around the extension – even to get three huge boards to cover the ground leading in to Pádraigs bedroom door, so that the wheelchair could easily be pushed across.

The really thorough, really nice, and really helpful ‘crews’ from the NRH and the HSE arrived with Pádraig at around 11am.

We tested the lifts, hoists, bed and other equipment. Pádraig was turned to the left, to the right, and back to the left. He was lifted out of the wheelchair and back into the bed. And he didn’t complain once.

As all was ready and in order, Pádraig will be staying here tonight. And, if all goes according to plan, he will stay here over the weekend. AND he’ll get discharged from the NRH, again: if it all goes according to plan, on Friday 13th – I’ll be pushing hard for Saturday, 14th. Not because I am superstitious.But you’d never new!

In exactly a week’s time it’ll be two years since we left on a jet plane.

Tonight, we’re here together. Together. In the Dreamboat! Sheer bliss.

 

Could you please open the door and unload to let me have a look at all that stuff in your car? – said the security officer in Holyhead to me this morning.

When he saw the expression on my face he started to laugh and couldn’t stop… I probably couldn’t believe how good his own joke had been. And then he said, “Oh go on! I wouldn’t do this to anybody! Hahahahaha hahahaha hahaaaaa!” At the end, he had tears in his eyes and he could hardly breathe because he had been laughing so much. Border security guards have a tough and boring life, I thought. And I had made his day.

I cannot believe that this is all over. I had finished emptying and cleaning the apartment just 10 minutes before the ‘Genosse’ from the Genossenschaft arrived to check the place and fill in the Übergabeprotokoll. It was the same person who had filled in the Vorläufiges Abnahmeprotokoll some weeks ago. Everything was fine. The only thing he had to do was to print out the Übergabeprotokoll from his mobile printer, all eight pages of it, and we both had to sign it.

And off I went, direction Calais. Train under the Channel. Folkestone, direction Holyhead. It was eery driving on the M25 with almost no other cars being around. And then flashing lights were passing me by. First I ignored them. Then I didn’t believe what they were saying. M40 closed. M1 closed. Roadworks. Fortunately, the restaurants beside the motorway all have wifi, so I pulled in to update my ‘map’ and copy down new directions, just when I thought I was completely lost in a limbo circling around London on the M25.

Still can’t believe that this is all over.

Pfffhhh!!!

Just arrived at a “Tunnel sous la Manche” which I hope translates into “Eurotunnel” – whoever translated it or came up with the name must have “forgotten” the ‘Euro’-bit. Otherwise, if you won’t hear from me tomorrow it was a different tunnel to who knows where!

By the way, I still cannot believe the amount of stuff that fits into the Doblo. Unbelievable!

Unbelievable also that this is the end of Tonndorf…

 

  
    
    
    
 
Off to the tunnel of who knows where…