It’s still hard to keep my eyes open. Each time I sit down, they close and I start drifting away. The same is happening to Pádraig. It’ll take a while to get over those four weeks at bootcamp and that epic journey back home!

In case you’re not living in Ireland: we are having our summer! It is warm, bright, and calm. No wind whatsoever. A perfect garden day!

What one of Pádraig’s friends set up a couple of years ago as a sensory garden is taking shape. It’s the first year that the plants are covering the ground. It’s looking really great and the smell is fantastic! Even the ‘water features’, simple granite slabs, are beautiful, producing that calming sound of water flowing down a stream.

Pádraig had a visitor this afternoon, a good old friend. We did the German thing and had Kaffeetrinken mit Kuchen. It was so nice and so quiet you could have thought we were in the middle of the country.  Sadly, that friend who came over to visit is in hospital for some tests and checkups and had to go back there early in the evening. Even thinking about hospitals and listening to what is happening to our friend is making me feel terrible. People are trying to do their best (well, most of them:), but working in a large organisation, in an institution, requires you to adapt to how that institution works. There is no room for individuality, for individual preferences, requests, wishes or ways of being.

The only choice is: custard or jelly for desert.

Neither of them terribly exciting.

We got home half an hour after midnight A bit of an epic journey using almost every kind of transport, including a train driving 250km/hr – before it broke down in the middle of nowhere for 45 minutes. There were cancellations, breakdowns, and delays. Almost unsurmountable obstacles for wheelchairs, ultra-high tech aids, and beautiful people offering their help along the way, including a Deutsche Bahn Train Chief telling Pádraig to press the SOS Button if he needed assistance on the train, and personally helping to lift (!) Padraig onto and out of her train.

There were dozens of small miracles happening yesterday and dozen of angels helping us along the way.

(We we’re listening to Nick Cave’s “Into my Arms” along the way…)

In the end: we made it.

Which shows: in some cases you have to keep trying and pushing and sweating (and crying. And laughing.) to get you where you want to go. But you have to keep going and trying and take a chance.

We picked Stuttgart Airport for our return journey because it’s closer to Pforzheim than Frankfurt and because flights back to Dublin leave earlier. Today we got a lift by car to Stuttgart. Smooth journey and we arrived there 3 hours early.

10 minutes later check-in opened and we were told that the flight was cancelled. They didn’t know why. They offered a hotel, dinner and breakfast. But we needed to get home.

Ryanair later in the evening but quite expensive. Or rebooking with Aer Lingus and flying back from Frankfurt.

So. S-Bahn from the airport to the Hauptbahnhof. If you have ever been in Stuttgart Hauptbahnhof then you know what expected us. If you don’t know the station: it’s a bit like the new airport in Berlin, only that it is open.

Onto a train to Frankfurt Airport. A bus to terminal 2 where checkin opened as we arrived.

Terrible discussions about getting the seats we had booked previously in row 1. We wanted them because there’s more room for 6’7″ Pádraig . The man at the checkin didn’t want to give it to us for reasons I don’t understand. Eventually, he allowed Pádraig to sit by himself in a window seat in row one, kept the middle seat free, and put us in the two aisle seats of row one. Mmhhh…

And then: an hour and a half delay.

We’re sitting in a mobility lounge. And wait.

We left Pforzheim at around noon and at the moment it looks as if we might get back to Dublin just before midnight.

What a journey….

I am sitting in the dark. Just the laptop screen is bringing some light to the room. Small lights on the keyboard help me to find the letters as I am typing. The windows are wide open to let in some air.

You want it darker. 

If you are the dealer, I’m out of the game
If you are the healer, it means I’m broken and lame
If thine is the glory then mine must be the shame
You want it darker
We kill the flame

Lyrics mean different things to different people and in different circumstances. Listening tonight, as I am sitting in the dark, to You want it darker by Leonard Cohen, the quintessential minimalistic song, reflects my mood tonight. And it carries some peace that is stunning. You want it darker. We kill the flame.

There’s a lover in the story
But the story’s still the same
There’s a lullaby for suffering
And a paradox to blame

Cohen wrote and recorded this song when death was close. The time when you accept things as they are. Even if they are not quite as you wish them to be.

To “be ready”, to be able to say “hineni” is, I feel, one of the highest achievements for anybody. Not only when death is near, but even more so when you are totally focused on life. There’s no more chasing, no more hatred, no more disappointed. All this is substituted by the acceptance that “the story is still the same“, no matter what.

No matter what.

It’ll be our last day here tomorrow. A short day: one hour physio, one hour lokomat, one hour SLT. An hour or two driving.  Two hours flying. 15 minutes home.

I feel stronger than before. I’m sure Pádraig feels stronger. Physically and mentally. The road will be long and winding, but we have the strength to travel it. We’ll be on top of the wave and there will be times when we’ll be out of the game, when we’ll be broken and lame. But it won’t make a difference. Because we’re ready. Ready to take on this journey together. And along the way we’ll have fund and enjoy the moments of laughter, humour, love and tenderness. As well as sitting in the dark. Listening to the most brilliant verse, voice and music you could imagine.

Here we are. We are present. Hineni.

Our stay in Pforzheim is coming to an end and Pádraig is doing well, demonstrating to his therapists how determined he is to make progress and what that progress looks like for him. During his SLT session to today, he did not only continue to use a straw to drink (still very small sips nut nonetheless…) he also managed to control the different muscles controlling facial expressions much better. He is working hard to produce sound, controlling his breath, making slow but steady progress. For the first time, we seem to manage to walk with Pádraig ourselves, me holding him from the back and someone else helping Pádraig to control his legs. It would be really good if we could walk with him when we are back in Dublin, even for a few minutes every day.

Tomorrow will be a ‘holy day’ here, Corpus Christi. Businesses and shops will be closed. Some therapists will work, but the programme will be reduced. We’ll have a short programme on Friday as we will have to leave at around noon to get to the airport in time.

Time to reflect on our stay here. And on our return to Dublin.

We all had a brilliant early bird dinner together in one of Dublin’s finest restaurants, tonight five years ago. When we left the restaurant, there was a seagull in front of one of the houses on this beautiful Georgian square, with a few small twigs in her beak. Almost tame. Not flying but walking up and down some steps in front of one of these really old houses. We didn’t know then. But it was the call of seagulls that would follow us for the next few years and remind us of this night that we had spent together as a really happy family. Trying to make as think what could have been. What should have been.

It’s Pádraig’s birthday today, as it was this day five years ago.

Five years ago, he had just finished college and was going to spend the next three months in the Boston area on a J1. That night, we were not just celebrating his birthday but also marking the beginning of the summer that would bring him to the USA and us to Germany. It was our last evening together before we were all going to go off in different directions.

It is hard to remember and think of the joy that we felt when he was born 28 years ago. When the memory of that night just five years ago is so strong and, at the same time, so incredibly sad.

It makes me think that it is good not to know what life holds for us. It would be unbearable.

Today, was a rollercoaster of a day. So sad looking back. So happy being here with him, eating the cake he had chosen, getting a bag full of birthday cards. Blowing out his birthday candle.

 

Pádraig had his first of a serious of ‘parties’ to mark his birthday and his incredible determination to live his life with energy, positivity, and fun. As we all should, really. Some of his German family was here to join us for lunch and ‘Kaffee und Kuchen’ with his first presents – there will be more when he’ll get back home this Friday. And then there will be a big and very special birthday party in the Club of Conradh na Gaeilge on Harcourt Street on 9 June.

There was a huge “Happy Birthday” banner in the therapy centre. There were people singing a range of different birthday songs in different languages almost non-stop. It was so nice and so good to see how many people were wishing him well.

Birthdays are funny days. No matter what the circumstances. No matter what the age. One thing is certain, for me, at least: they are the perfect occasion to practice that wise way of living in the moment and seizing the day. Looking back doesn’t change anything. Planning the future is usually pretty futile. Speculating what could have been or, worse, should have been, is definitely not helpful for a healthy mind.

Even if those ubiqutous seagulls keep trying to make me think that way.

There are Drive Through burger joints. There are Drive Through banks. All those places that are so new and modern and that make it easy for drivers of cars to do whatever they need to do without getting out their care.

Though, honestly, have you ever seen an Autofahrerbriefkasten? How far can you go to make life easier?

The angle I took the picture from isn’t great and it is a real ‘snap’ because I quickly wanted to capture something that I hadn’t seen before.

We, as well as a few doctors and therapists, have been speculating about Pádraig’s eyes for quite some time now.

What we know is that he can see with both eyes though it seems that his sight is slightly better in one eye than in the other eye. We know that often he seems to have his eyes closed making people think that he is asleep when, in fact, he is just relaxing his eyes, or he might be concentrating on something that doesn’t require his eyes to be open. Having his eyes closed doesn’t mean he is asleep.

He rarely opens both of his eyes. We have asked him why and we have consulted with doctors. There is a ‘view’ saying that because his eyes are not aligned (following the accident and operations) he might have double vision when he opens both eyes at the same time. And that this is the reason he keeps one of his eyes closed most of the time, and he just opens one of his eye — usually the left eye.

Today, for a while, and for the first time, he switched eyes. He kept his left eye closed and he opened his right eye. When I asked him he said that he could see ok with his right eye.

I had to think about those strokes with the ice across various muscles in his face over the past week and a half during his SLT sessions, and was wondering whether they were having an effect!

Loads of people went out to Dublin Castle today to watch the count, apparently. One women was handing out After Eights. You have to give it to her. No matter what side of that referendum you were on. That was a really good idea. You wonder why it took someone so long to come up with it.

Pat and I went out with a friend to have dinner and a drink by the river. We had a great night out, with someone staying with Pádraig. To talk, listen, get feed-back is a welcome break from the routine.

And before we went out this evening, we had a brilliant afternoon with two other friends and their three children. We even met three really nice Christian evangelists in the street who asked whether they could pray for Pádraig. They said that they had just prayed for a lady with back-aches. They repeated their prayer three and the aches and pains had disappeared completely. I must say that a lot of this is about expectation management. When they asked Pádraig whether he had noticed a change after the prayer, he very clear said ‘No’. An honest answer. But not the one expected!

We were walking back to the apartment just after lunch, the time when many people at the therapy centre were getting ready to go home for the weekend. There is one young person who has the coolest car I have ever seen. It’s black, it’s snazzy, it’s really shiny, it looks like a perfect drive for the no-speed-limit German autobahn, and it has a build-in robot that opens the door of the boot, reaches out to pick up the wheelchair standing beside the car where it was left by the driver, and softly deposits it into the boot, before closing it again. It’s almost unreal. And the best thing: just looking at the car, you wouldn’t have a clue of its sophistication – something the driver pointed out was really important. It was just a ‘normal’ car, an eye-turner only because it looked really really cool.

But it’s not. Unreal.

It has given back to this young person their independence to go out to visit friends, go swimming, or horse-riding or whatever. Despite a spinal injury that confines them to a (also pretty snazzy) wheelchair. It has given this young person independence from their family, carers and helpers. It’s, of course, not just the robot that makes this car so different, it’s also the way it can be driven: with a second ring behind the steering wheel instead of the usual accelerator pedal and a stick beside the steering wheel instead of the pedal-operated brakes. And some other gadgets, I’m sure we didn’t see or paid attention to because we were in such awe!

This is all truly impressive stuff. Demonstrating that there are no limits to what can be done by clever engineers who understand their clients needs.

I came across this really incredible live version of Learning to Fly by Tom Petty (with Stevie Nicks as backing singer!!) and a fantastic interaction with the audience. While Tom Petty once explained that he got the idea to the song from listening to a pilot saying that flying was really not that difficult, but coming down was — in my mind, the song turned into something slightly more transcendental, for lack of a better word.

It’s, at least in my mind, about life and its limits and the determination not to let that interfere with our aspirations and dreams.

I am learning to fly. But I ain’t got wings.

How cool is that!