It has been one of these days packed with stuff and not enough time to do half of the things that should have been done. Well, there’s always tomorrow:) It’s good to stay busy.

There have been so many friends helping out over the past days, so many more offering help that it I don’t know how to thank them. Not only would it have been impossible to manage without that help, knowing that it was available, that people have been making time to get us through these difficult days, just knowing that it was there gave me confidence and strength.

It has been an amazing (you don’t like that word either, do you?) experience, really uplifting, just when I needed a bit of a lift!

I feel I should be panicking, worrying, freaking out, being mad, going crazy, having a nervous breakdown, doubting in the meaning of life, wondering why us. The Sheriff in Brewster told me he knew a father in my situation who had become an alcoholic. The doctor in charge of disability in Hamburg told me that most couples looking after their child at home would get a divorce.

The truth is that I have never felt as calm and confident and strong and purposeful in my life.

It’s the dreamboater thing: knowing that you can achieve the impossible; being supported by incredible friends who will never let you go; defying misleading but well established truths; believing in justice; being convinced that you can be the change.

Pádraig is getting better. He is surrounded by friends, old and new. There is a buzz here in the house that I wouldn’t believe could exist if I did not experience it every day. It’s challenging for him, exciting, funny, and loving. It’s the energy he shares and which keeps him not just going but growing. Pat is getting better too and will hopefully be out of hospital by the end of the week.

Someone told me today that Dublin mothers, sisters, and grandmothers add a pinch of bread soda to the water in which they cook cabbage. I asked her why, what does the bread soda do to the taste or texture of the cabbage? She looked at me and said: that’s what women in Dublin do when they cook cabbage. That’s just the way it is. They’ve always done it that way.

There is this idea that some ‘truths’ are established so firmly that you’d never question them.

I was thinking: I’ll take the bread soda out of the cabbage and start questioning those well-established ways of doing things. Beginning with the obvious.

The number of years we’ve been married. And the first time we’re not going out. But we’re celebrating. More than ever.

Today is the 50th anniversary of the killing of Che Guevara. Just recently, his image had to be removed from an Aer Lingus advertising campaign in which they had used the pictures of famous people of Irish descent to advertise their new route to Miami. Apparently, this was offensive to the families of people who were killed by Che Guevara and the rebels who, in 1959, started to fight the Cuban regime that had converted Cuba into a casino and playground for the US Mafia. This morning, RTÉ interviewed a Cuban-American radio presenter who is asking the Irish government to withdraw the one euro stamp with the famous image of Che, painted by an Irishman, that the Post Office just issued to commemorate his death.

The interviewer asked the American lady what she thought about the 20 dollar note showing an image of president Jackson who is not universally admired for his treatment of native americans. The lady said that Jackson had been an elected president of the USA and that we and civilisation had moved on from the time that Jackson was president.

Pádraig went into hospital today, this time not to be treated but to visit. A reversal of roles in a way. We heard how vital it is to get up, to move, to breathe deeply, to cough. That lying in bed without doing any of these things, even when you are weak, is really bad for you.

I had this strange feeling today that things are looking up – strange, because things, at the moment, seem to be really difficult and complicated. But I thought that we are probably (almost:) over the most difficult hurdles towards some kind of ‘normality’, whatever that might be.

I had to think of what that Germany lady told me on the phone: that they were not worn out, that they were not hopelessly lost and beaten, but that they got stronger as they were profoundly challenged over the past 10 years since the accident of their daughter.

A bit like Che Guevara Lynch who started as a doctor, exploring Latin America on a motorbike, and ended up as probably the most iconic revolutionary of the 20th century. He grew and became stronger as he took on injustice, exploitation, and poverty. And he never stopped. Until he was assassinated by US-backed Bolivian forces at the age of 39, on this day 50 years ago. Hasta Siempre.

I didn’t really know what it meant ‘when the sky falls’. And I didn’t know how tall you can stand together when it does. Just a few hours before Pádraig’s accident I had given a presentation in the South China Sea using Adele’s song Skyfall as the intro. Using this fabulous song, I wanted to make my talk more attractive, and a little bit more dramatic and motivational. It was a real success. Although, looking back, it was pathetic.

However, when I listened to the song again today, I thought “this is it”. When the sky falls, when the most horrible things happen, this is what we have to do: “stand tall”, “stand together”.

A few days ago, a mother who’s daughter had suffered a severe acquired brain injury ten years ago told me that, against what some might have expected, she and her family grew stronger over the years. And while I was listening to her I knew that they were standing tall.

Pádraig, too, is standing tall again. Each day, when he gets out of bed, he and I stand together, he quite a bit taller than myself. It is one of the highlights of each day for me that he manages, with a little bit of help, to lift up his head and hold it, by himself, for a few seconds while standing. And he is adding time to those few seconds every day.

Pat is recovering from her procedure and will hopefully be back home towards the end of the week.

It’s amazing how, when times get tough, humans outgrow themselves, they can stand really tall and find strengths they never knew they had. And become Dreamboaters:)

It was a mixed up day. We got up too early, routine went out the window, time seemed to move back and forth. Now, that the day is over, I am happy it is and that all’s well.

Pat went into hospital for a procedure and will stay there a few days. Pádraig had a few visitors and family helpers who went out for a walk with him and helped with breakfast and lunch.

I got a phone call from the mother whose daughter survived a very severe brain injury ten years ago. She had read the article I wrote for the German magazine “Not” (nothing got to do with the English “not”:). She said that there were massive similarities between what happened to her daughter and how they were trying to deal with the situation and what happened to Pádraig. She and her other children are therapists. She invited us over to her house, to stay with her for free, to exchange experiences and to learn from each other. They live in the eastern part of Germany, in the countryside.

I didn’t have the time to tell Pádraig about the invitation yet, but I am sure he’ll go for it! What an opportunity to help each other out. To get to know like-minded people. To learn, to travel, to have fun, and to share positive energy.

Which brings me back to the last few days. I really do have to remind myself to invest all my energy into good stuff. Into work that really will affect change for Pádraig, for us, for other survivors and their families and for society. This will only happy in a positive way. Trying to convince people who won’t change and don’t want to will only result in bitterness, frustration and often almost unbearable stress – and who would want that?

Have you ever thought, maybe on a particular occasion, at some specific moment in your life, that the world is too big and complex for you? A moment when you felt that there were so many things you were deeply connected to happening all at the same time and you had to constantly switch between them to keep them moving? I am having a moment like that. It’s a weird feeling. Scary too. Because most things in life, those things I’m connected to, maybe responsible for, and the people I really care for, life itself, all seem so fragile that I fear, at a blink, in a moment I cannot choose, loosing what is most precious. It’s a fear I knew existed but didn’t know four years ago, fear I’m now living with each and every day.

First, she commented on someone’s ringtone (“In the mood”) in the packed tram and told me her father played the trumpet and had taught her the piano. I smiled and sid I liked Glen Miller too. She went on to say how she didn’t understand that men always do their own stuff and women theirs because herself and her husband liked so much to go out to concerts together. I smiled. On the way out of the tram, she was trying to find out what I was doing at the fair and told me that she was working for the Dusseldorf health administration and was a doctor, originally from the Ukraine. I didn’t know how to react. When I finally gave in to her curiosity and told her about Pádraig and An Saol I realised (too late) that there are times when lies can be justified. But then, just before we went our own ways, she said that Pádraig needed to be treated like any other young man. That we have to interact with him as we’ve always done. No different. And that that included loving, and giving out to him when that was necessary. Encouraging him to go out. Being normal with him, not patronising. Laughing, shouting and singing around him, not being sad or desperate.

It reminded me of a story from a visit with Pádraig to the supermarket someone told me the other day. When they went into the supermarket, a “caring” lady said to them “Oh, isn’t this great and isn’t he a great help going shopping”, to which the answer was “Well, he isn’t really, not at all, except that we can hang our shopping bags on the wheelchair.” – Pádraig had a huge smile on his face following the conversation. He got the humour, as well as the seriousness of that exchange. Not sure if the lady did… The thing is: just because a grown up man sits in a wheelchair and can’t talk, you don’t have to treat him like a five-year old.

Pádraig had a busy day today and a brilliant late afternoon, the almost traditional Thursday-friends-visiting afternoon with four of his friends creating an energy and an atmosphere that was so uplifting that it kept him going for hours. It’s a real credit to his friends that they keep this going and manage to bring a lot of (young:) life to the house on Thursdays!

I was at Europe’s biggest rehabilitation exhibition and fair in Düsseldorf today and was in awe of the futuristic exoskeleton suits, the brilliantly designed camper vans for wheelchair drivers, and the self-drive configurable cars for persons with different levels of disabilities. I met some people I knew, refreshed my contacts with the An Saol pilot project partners, and started to figure out a possible deal with Hocoma, the company who’ll be supplying some of the equipment for An Saol. I also talked to the company whose Irish partner didn’t want to sell us equipment because of their dependency from their main client (long story:). All in all a really long, good day.

The Charities Regulatory Authority of Ireland today approved the An Saol Foundation as a charity. It took us months, if not year, to get to this point. Why? Because there have been so many scandals around charities in Ireland that they have made it really really difficult to register new charities. Now, we just have to register with Revenue for charitable tax exemption – and we’re ready to sign the Service Level Agreement (SLA) with the HSE to start implementing the An Saol pilot project.

Wednesday is Music Therapy day. Today, Dolly came along to play her favourite role as a therapy dog. The happiness of the two sitting in the wheelchair was contagious and made me think whether we should try and get a therapy dog for Pádraig (and us:). The vibes were just awesome!

It was a whirlwind day. After the usual 2 hours of getting up with some stretches and standing, followed by breakfast, Pádraig met a new therapist who discussed with us her ideas of how to enable Pádraig to communicate better. Stuff around assistive technology. Quick visit to Beaumont’s eye clinic. Lunch. Swimming in Sandymount. Short rest. Some visitors. Dinner watching the news. Action Pádraig really enjoys.

Thank you for your opinions and advice about last night’s posts.

The incredible truth is that home care is not regulated in Ireland and carers are not required to have experience or qualifications (although many excellent carers do have both). Another incredible truth is that the Department of Health says that home care packages include home help and therapies – different and in addition to that supplied by the clinics in the community.

Virtually no-one seems to know about this.