Bray on Mother’s Day was packed. Bray on Mother’s Day was difficult to get in to. Bray on Mother’s Day was almost impossible to get out of. Bray on Mother’s Day was gorgeous sunshine, full of people, full of life, endless queue at the chipper, kids throwing stones on the beach, insane people going for a swim fully dressed, an overcrowded playground, kids shouting, adults arguing, everybody having a good time (that’s what they came for), everybody enjoying life – whether they were aware of it or not.

Pádraig went for a walk along the promenade with us, with a friend of ours, our oldest common and best friend we see far too seldom, a friend he had welcomed earlier on in our house with the broadest of smiles.

Back home in the evening, he had his second take-away after the accident, but for the first time helped by one of his best friends. Just before dinner, the two had a bit of a conversation and a laugh about school and the common memories they share about it.

Later we sat around the table and all agreed about what a wonderful paella I had cooked before we parted and are now making our way to bed.

It was a day when we all (at least I think it was all of us, maybe in different ways) enjoyed life in the face of terrible tragedies. I was more aware than ever before of how lucky we are to have days like these in company.

It was a good Mother’s Day. It was a celebration of life in the face of tragedy and death.

You see, a ladder can be used for many different things. As can the battery for Pádraig’s wheelchair ‘motor’: that is the little but very heavy blue bag strapped to the ladder to pull it away from Pádraig.

What is Pádraig doing here? And what is so amazing about it!?

Well, first of all, he is simply doing something that he has never done before: he is holding the tilted ladder that is trying to ‘get away’ from him, to pull his arms away from him to stand on its four legs, he is holding on firmly to this ladder that is trying to pull away from him with both of his hands; when I ask him, he pulls the ladder towards him, and a few seconds later, again when I ask him, he is pushing it away from him. And he did this a few times this morning. It’s all very gently and slow. But he is doing all this all by himself and when I ask him to do it.

Last year in neuro rehab in Pforzheim, in Germany, they had velcro gloves that held his hands to a stick because he could no hold it himself. Rather than him moving it, a therapist moved it for him. Today, he did all these movements absolutely and completely by himself. Check it out yourself.

We did this today because I wanted to do something different with Pádraig, to keep his interest going, to keep him motivated, and to allow him to show us something new he could do. I remembered that they do something similar in Pforzheim. Active movements. Voluntary movements. Movements that have some kind of purpose. I have never seen anything remotely similar here in Ireland, nor has any physio ever proposed anything anywhere even remotely similar as an exercise for Pádraig.

Now I ask you – why is that so?

There are many Irish heroes. Most of them died a tragic death (which seems to be part of the deal to become a hero). Tom Crean is the exception that proves the rule to be correct. He died in a hospital in Cork at the age of 61. As a young man, at the beginning of the last century, Tom joined several expeditions to explore the South Pole with Captain Scott and Ernest Shackleton. During these expeditions.

Today I went to Dingle to explore the last 25km of the Kerry Camino we’ll walk with Pádraig in early April (arrival 5th, walk 6th-7th, return 8th), on the bicycle. I started just 3km outside of Annascaul to make up the necessary 25km to Dingle. Annascaul is the birthplace of Tom Crean and it is marked by a famous pub, the South Pole Inn Annascaul.

At the end of today’s tour, I sat down there in the sunshine and thought that this is the right place to start Pádraig’s Camino – to start at a place that is closely connected to one of the bravest Irishmen we know. – Wouldn’t you agree?

We will be continuing with our Saturday meetings this Saturday

Imagine that: internationally more than 40%, and in Ireland (really, not so surprisingly) more than 60% (!) of survivors with a severe acquired brain injury are wrongly diagnosed as not being conscious.

Close your eyes for a second and put yourself into that space: lying in bed, “staring at the ceiling”, wondering why on earth people around are ignoring you. Completely. Talking to you in the third person. Never directing a word to you. A consultant saying that any therapy on you would be wasted.

This is, in the real life of Pádraig and many others like him, what is happening.
Every day.

What we want to make happen with the An Saol Foundation is to make sure that no-one will ever be left in that position: “staring at the ceiling”, wondering what is going on…

What we want is what Lionel Richie so absolutely brilliantly captured in his dazzling Motown song and video “Dancing on the Ceiling“.

Can you feel the fun and the energy?

Turning things upside down!

Looking at the world from a completely different perspective!

No more staring at the ceiling – we’ll be dancing on it!

Join us. Make it happen. Now.

It was all over before we even knew it had started. 10 minutes of our lives just disappeared in a flash but will for all eternity be available in the digital world. It feels and sounds a bit like science fiction. Moments like these are definitely not part of our reality. It’s us watching other people on the telly, usually.

We did this because we thought Pádraig’s story and ours, as well as that of An Saol, could help ending the neglect that survivors of severe acquired brain injury in Ireland are currently suffering.

Will it?

Who knows.

In case you missed our 10 minutes of ‘fame’, and for us to remember how those 10 minutes of our lives suddenly disappeared into the ether – here it is. The first part of “Tonight with Vincent Browne” on TV3 last night.

“Walk on air against your better judgement.”

Tonight we’re getting ready to join Vincent Browne at 11pm on his TV3 show where he usually discusses important matters of the day with important people. Tonight it’ll be Pat and I. You can just imagine that we are that tiny little bit nervous about this whole thing.

We’ve been thinking a bit about what we’ll be saying, what is the important point to bring across. There is the scandal of the abandonment of persons with a severe acquired brain injury (sABI) that needs to be highlighted again and again and again. But, more importantly, we want to highlight the fact that NOW is the time to do something about it. The proposal for the An Saol Pilot Project has been accepted by Minister Harris and by the HSE. It was included in the HSE’s 2017 Service Plan. Why is it taking so long to implement it? What does it say about the HSE that a project that has been approved gets stuck in bureaucracy and doesn’t see the light of day?

We need champions, energetic trail-blazers, Dreamboaters – where are they?

Tonight, we hope to connect with some of these extraordinary people who have the capacity and the willingness to make change happen. To claim the fundamental human rights of those who have been abandoned and neglected by professionals and society – just because they have a severe acquired brain injury.

Together we will change the hearts and minds of people.

Together we will make life worth living. For everyone.

It’s the best part of four years that Pádraig was in the National Aquatic Centre (NAC) the last time. It’s a pool where serious swimmers spend a lot of their time, either training or competing. It’s where he became a champion. It’s where we spent lots of weekends on time keeping, watching, shouting, sweating, and really really hoping Pádraig and his sisters would get a new personal best, a PB.

One of Pádraig’s sisters has been playing water polo for a while and today we went to see her team playing. I didn’t quite know what to expect and how it would feel for us all to be back there with Pádraig.

And you know what? He really liked it. It was a bit hot up in the viewing area (always has been;), perfect on an otherwise miserable, windy and wet Sunday afternoon.

The most amazing thing is that he is back in pool once a week and really enjoying it.

What is hard to believe is that this is possible only and exclusively because of the hep of his ‘old’ coaches (and a bit of our own efforts). That this is not something that was offered to him as part of his rehab…

I wouldn’t know what that is, “Khao Soi Ghai”, if someone hadn’t introduced me to Camile, the Ireland-based Thai ‘healthy’ take-away chain, and if Pádraig hadn’t decided yesterday that this is what he wanted to have for his name’s day, his ‘Namenstag’.

His first take-away dinner in a bit more than 3 1/2 years.

Thai. Spicy. Tasty. Noodles with chicken in a creamy satay curry sauce and Asian greens.

The portions are well-sized. And he finished it all. Every single noodle, All of the chicken. Everything. He must have really liked it and thought that this was such a welcome difference compared to the pretty conservative cooking we do at home.

Lives little, and sometimes not so little, pleasures. Food.

We will be continuing with our Saturday meetings this Saturday