The wound left by the PEG has been healing really well. It will leave a trace and a reminder of it on his stomach, but it will fade away. Together with the memories of constant pre-digested drip feeding, eliminating the very sensation of hunger and thirst, shrinking the stomach and eliminating all pleasures associated with food.

Yesterday, a father who attempted to murder his four children was jailed for eight years. According to the Irish Independent,

The judge said among the aggravating factors was the “narcissistic element” of the offences where the man had shown a “complete lack of respect for the children’s autonomy”, believing they would be better off dead.

A nurse in an Irish hospital, when we were standing beside Pádraig, had asked how the accident had happened and then said that it might have been better had he died. Knowing, had she thought about it, that Pádraig could hear her and that we had been fighting together for his life for more than two years.

Compare.

This book turned up called “Patrick wirbeleit – viele wie dich gibt es nicht”. It’s a book Pádraig got when he was maybe eight years old. He didn’t get it because at the time we thought it was a particularly great or exceptionally interesting book, but because of its name. You must have guessed it!

It’s hard to find a book with your name in the title – even if it is still a mystery to me what “wirbeleit” means. The subtitle, in contrast, is really nice: “there aren’t many like you”. No truer words said. We knew that then and, in a much more profound way, we know that today.

What I didn’t know then is how important the idea of him being in this boat was going to be to him and to myself. Maybe that’s where the Dreamboat idea originated.

The book is full of pictures about Patrick exploring the world and discovering new and exciting aspects to it. One of the best pictures in my opinion is the one that says that “many snails are not faster than one”.

The idea behind this is plausible. Yet, this is a more abstract version of very many concrete situations I’m sure you have experienced many times in your life. And they provoke strong reactions when I experience them. Snails are going to take their time. No matter how many of them are aiming for the finishing line.

What this tells me is that more people getting involved is not always the solution to a problem. And: there are times when it might be better to take things slow and easy while staying focussed. Because they just take their time.

I went for a swim this morning. And as I was about to get dressed and thought that my bag was quite light, I noticed that I had forgotten to bring a towel. This afternoon as I was on the way to Pádraig’s swimming session, I noticed I had forgotten my togs. Lesson: I can always get worse.

If you let it.

The trick is to be strong enough in yourself to deal with adversary. To be strong enough not to allow it to destroy you.

But above all: we all know that there is always something to be grateful for. There is always some good. By contrast, bad stuff is always and only distracting. It leads to nothing.

(I managed to deal with the forgotten towel and even the forgotten togs! 🙂

When I started writing this blog almost five years ago, I never thought anybody would read it. Apart from Pádraig’s friends who wanted to know how he was getting on in Hamburg. So I wrote about what happened. I wrote how I felt. I wrote about people that crossed my way. Our way. There were few things I did not write about. And when I did not it was because I did not want to.

That has changed. I have become much more conscious, because I have been told on several occasions, that I have to respect the privacy of others, even, and especially, if they are professionals. I have been told not to rock any boats too much because that could make things difficult.

I don’t like writing with scissors in my head.

Yet, it seems that there are things that need to be said that cannot be said because they would do damage if they were to be said. Sounds complicated? It is. At least for me. When sharing my personal perspective on what is going on should be simple. Because that is what I do. I share my perspective. Not the truth.

Pádraig continues to do well. In physio this morning, he was on a floor matt lying on his back with his knees up in the air, pushing his pelvis really high up towards the ceiling. The thing is, and I will get back to this one day, that it is becoming clearer to me every day that while therapy is necessary, integration and participation and love shown and received is the key. After that, everything else falls into its place. – What do you think?

Read a great article today, from the New Yorker:

Even more serious is the growing acceptance of the don’t-rock-the-boat response to those artists who do rock it, the growing agreement that censorship can be justified when certain interest groups, or genders, or faiths declare themselves affronted by a piece of work. Great art, or, let’s just say, more modestly, original art is never created in the safe middle ground, but always at the edge. Originality is dangerous. It challenges, questions, overturns assumptions, unsettles moral codes, disrespects sacred cows or other such entities. It can be shocking, or ugly, or, to use the catch-all term so beloved of the tabloid press, controversial. And if we believe in liberty, if we want the air we breathe to remain plentiful and breathable, this is the art whose right to exist we must not only defend, but celebrate. Art is not entertainment. At its very best, it’s a revolution.

I find it difficult at times to stay balanced.

Driving down to the town I grew up in to celebrate a 60s Birthday with some of the people I grew up with. Staying up all night singing and cracking jokes and laughing senselessly. Moving in a different universe. Exposing my mind to different lives.

This is a specialised shop for disability and rehabilitation equipment. It’s in the North of Germany and it serves an area where it can take engineers, specialised advisors, sales and support personnel two to three hours to get to their clients. – A bit like Ireland. Only that in Ireland I have never come across a shop like this. Because it is not just a shop but it has an exhibition area and several highly specialised workshops. If you check out the pictures below, you will see what they do in these workshops: they sew, they build prosthesis, they build and adapt seating, they design and adapt support systems, they even have ‘simple’ parts such as hundreds of wheels to fit any kind of wheelchair. It would be brilliant to have such a place in Ireland.

When we were making plans to evacuate from Cape Cod and to fly Pádraig home, the doctors advised us that it would be safer for Pádraig to get a PEG, a direct entry into his stomach to which a tube could be connected in order to provide him with nutrition and hydration. They said it would be safer for the journey than a tube through the nose.

from: https://elai-bloggt.de/peg-button-selbst-gezogen-ballon-undicht/

from: http://forum.mndassociation.org/showthread.php?5182-Peg-users

(Note: the pictures above are not of Pádraig but from the web.)

He had the PEG for 15 months. However, in 2015 we gradually introduced Pádraig to drink and food. Since the summer of 2015 he took his food only orally. Since the beginning of this year he took his liquids and drinks only orally.

And today, his PEG was taken out.

It will take a few days to close and heal up. There will be a mark on his stomach that he once had a PEG but it will become a distant memory.

This is a very major step. One that few expected him ever to take.

Two other really important things happened today. Someone in the family got a preliminary date for a final operation that will move things in the right direction. And I had an almost one hour-long conversation with the Archbishop of Dublin about injuries to the brain, about Pádraig, and about efforts to help persons with sABI to recover. It was one of the best conversations in my life. Ever.

It was pretty cold that day. In the morning I found out that one of my two friends who had come over from Germany didn’t have a white shirt to wear. As if there wasn’t anything else to do, I borrowed one from my father and brought it over to their B&B, together with a tie which he had not forgotten – he had just never worn one before. My sisters’ hats looked great – they and the rest of my family had been told that women wear hats on these special occasions. Which turned out not to be entirely true. The neighbour had taken a few days off to clean out his garage so that we could park my overloaded VW Beatle in it – the first time a car had been parked in that garage for years – as we were heading off to Spain for the year the next day.

Today must have been one of the warmest October days on record in Dublin. We sat out in the garden for a cup of coffee and a bit of carrot cake. After a meeting I had erroneously scheduled for today, we headed out to have dinner. Remembering that day 33 years ago. Remembering 33 years. Thinking: we very likely won’t be here in another 33 years. Settling for and toasting to the next ten.

I was so nervous back then that I never really enjoyed that day. Back then I didn’t think it was the ‘happiest day’ in my life.

Today, there is absolutely no doubt in my mind that it was not just one of the happiest days but also one of the luckiest day in my life. In many surprising and unforeseen ways.

When I look at the wedding pictures, those of us who are still alive are in the minority. Not just the older generation, but also my friend of the white shirt and tie, and my sister are no longer with us.

A reminder of how precious life is. And that it is up to us to live it to the full. And, even more importantly, that we need to help those who need our help most to live their life to the full.

I listened to Amazed today. I know, I know. It is terribly “schmalzig”.

I don’t know how you do what you do
I’m so in love with you
It just keeps getting better

There are days when it ‘just keeps getting better’ and there are days that are difficult. Today was a good day. For which I am truly grateful.

The video I like best from the many I took at the Ironman last Sunday is from the start at the beach. Everybody was so excited, the music being blasted across the beach was breathtakingly dramatic (and funny: “Sweet Caroline, good times’ve never been so good” when they were thrown back onto the beach), the first light of the new day was just coming out from above the horizon – a day that would see almost all of the competitors swimming, running and cycling for more than 12 hours without a break, without lunch and without a dinner. Some of them would take until after midnight to make it across the finishing line. Everybody there on the beach knew that this was going to be one of the toughest days in their life. A day they had been looking forward to for a long long time during endless hours of training. Do I need to go on?

And now watch this short video. This is how the race started.

The waves were crashing on to the beach. Many of the competitors who jumped into the waves landed flat on their belly on the sand when the water receded faster than they could manage to overcome the swell. And when they were just getting back up, the next wave took them and threw them onto their backs beyond the point where they had just tried to get into the water. Imagine this being the beginning of their big day of achieving the impossible. It was as if Poseidon was telling them not to bother even trying; he would gobble them up and spit them back out. Pure hybris.

But they kept trying. Again and again and again. Until they were finally out in the open water. 3.8km of really choppy waters ahead of them. And when the first swimmers got back and made their way through the waves back onto the beach, they started to run as soon as they managed to get back onto their feet, trying to get to their bicycles as fast as possible.

This was inspiring. They did not give up. Although they were facing the most difficult conditions right from the start.

Pádraig did not do an Ironman today, but he went back swimming. He go a present of a ‘dry robe’ that he can use to keep dry and warm when getting out of the water and into the car. With this robe, there is really no need for him to get changed on one of the wall-mounted stretchers in the changing room (if there is one of these stretchers) he can get from the car straight into the pool, and from the pool straight back into the car. It was a fantastic present.

It was also a fantastic day because today, for the very first time, when I helped Pádraig out of the bed after his nap, I gave him a hand to stand up. And as we were standing there, I helped him a little, but just a little, to move his legs. And very slowly, he took four steps forward. He had taken steps and walked in Pforzheim, of course, many times with the helped of two or three people. But never with just one person supporting him. It was like his own Ironman achievement! Challenging the gods. Pure hybris.