There is a widely held belief that the withdrawal of live-saving measures, and what withdrawal of food administered via a PEG for someone who is going to die of an injury or illness and does not have any prospect of recovery. (Here is a paper in German discussing the topic.) Like in the case of someone in a permanent vegetative state.

In the UK, changes introduced in legislation recently mean that “judges will no longer need to be consulted when doctors and relatives of patients in a vegetative or minimally conscious state agree life-support treatment should end”.

I can only speak for myself – when Pádraig’s accident happened I was so dependent on the advice from doctors that I would almost have followed whatever they recommended. Had I done this, Pádraig would not be with us today.

A German judge once explained to me that a thorough, independent hearing guided by independent experts was necessary in all cases where the life of a patients was involved. This, she said, has to do with our history.

“If you look the right way, the whole world is a garden”, Mary concludes in the “Secret Garden“. It’s “the one place where miracles grow”.

Although the door to the secret garden was locked today and guarded by a fierce hound, the garden we were privileged to spend a few hours in today was full of beauty and magic.

There were people there who had gone to school with Pádraig, there were many old friends, and there were people Pádraig and us had never met before.

They had all been invited by Marie and here family who had worked for months to make this day truly special.

Many people had made cakes and sandwiches, many had brought in gifts for the great raffle. All to raise funds for “Caring for Pádraig”, a fund set up and managed independently from our family to support Pádraig’s rehabilitation,

It’s worth remembering that Pádraig does not receive any rehab therapy at all from the HSE. Without the incredible efforts of Marie and her family, without them organising an annual fundraiser, Pádraig would not have made the progress he has been making.

So on behalf of Pádraig and my family, I would like to thank Marie and her family and all of Pádraig’s friends (old and new) who spent time preparing today’s wonderful coffee morning and who donated so generously to the “Caring for Pádraig” fund. Rest assured that every cent will be spent directly to support Pádraig’s rehabilitation programme which could not be delivered to him was it not for your generosity.

Today, the doors to the secret garden were wide open and everybody was able to discover “the one place where miracles grow”.

Thanks you to Marie ad here family and thank you to all

If you are in Dublin tomorrow, there’ll be only one place to be

(before you go tot the All Ireland Football Final):

See you there!

Only one of us could join Amanda’s family this morning to remember her life and to say a final good-bye.

It was Tommy who offered what must have been one of the best and most moving eulogies ever.

There is a nagging doubt about whether Amanda had died so young had she received the appropriate care and treatment. Tommy, her partner, could not have been a more forceful advocate on Amanda’s behalf. For him, he says, the fight is not over.

We’ve only just began – to live.

Back in Dublin. Back to the routine – if there was any. Yesterday seems like a dream. Did it really happen?

What will really happen is this coming Sunday’s really important, really generous, really caring fundraiser for Pádraig which Mary and her family have ben organising for years.

Please spread the word and join us if you can!

Never had a day like today. And most likely will never have one like it as long as I live.

The University of Limerick this week hosts five days of conferring ceremonies which will see 2,807 students graduate, including 56 PhD graduates. The President of the University of Limerick, Dr. Des Fitzgerald and Reinhard Schaler, Faculty of Science & Engineering at the University of Limerick. Photo: Sean Curtin True Media

The highlight was a Dean reading out in front of 1,000 people, colleagues, students and their families, including my own, over more than 10 minutes, with me standing and sweating on the stage, the reasons why the University had decided to give me this award of excellence for services in the community. I nearly died during those minutes.

Apart from those never-ending embarrassing minutes, it was a day that I am really grateful for. And I am grateful, with all my heart, to all the fabulous people who made The Rosetta Foundation and the An Saol Foundation possible (check out my wonderful colleague Tabea de Wille’s article on LinkedIn); and, of course and above all, to my family for their encouragement and support. It is them who give me the energy, it is them who make me continue when I’m about to give up; it is them who encourage me not to give up and do what many would consider to be the impossible; and it is them who do a lot of the work. Neither The Rosetta Foundation nor the An Saol Foundation would have gone anywhere, they would not have achieve anything without them.

We all had a great day, from getting up in the morning all excited, to the drive up to Limerick, to meetings and lunch in UL, the award ceremony, and meeting many of my old friends who I am missing.

Tonight, half way between Limerick and Dublin, we had a small family celebration. And Pádraig, tired as he was after a long day, was in great form. How happy I am that he was able to hear today that he is the inspiration behind An Saol and even gave the foundation its name.

Tonight was a happy day. A day out. – Back to ‘normal’ tomorrow:)

We tried out something new today. Thinking that diversity might spark motivation and could even bring some excitement into exercise sessions.

So we got this expanding band with two handles I had bought in Lidl a long time ago when I thought that, one day, we’d be looking for one.

Just in case you don’t know Lidl or Aldi shops – this is the way their middle isle works: you buy stuff you’re not really looking for, but they make it so irresistibly attractive that you buy it anyways, just in case one day…

And today was the day.

The absolutely amazing and thrilling thing was that Pádraig could actually use the expander he could grab the handles and pull them back away from the point where it was held, and not ‘just’ with his arms but also by pulling back his shoulders. This is only a short sniper of a much longer exercise.

I shouldn’t really be surprised anymore. But I am. Many of what I perceive as Pádraig’s ‘restrictions’ are not his at all but imposed on him by us by not giving him the opportunity to overcome them. The trick then is, the absolute necessity is, to constantly search for new challenges for Pádraig and to give him the opportunity to master them. Which sounds easy. But isn’t really. It’s a challenge I don’t master sufficiently yet.

Amanda Denton suffered a severe brain injury in May 2014. Her struggle for rehabilitation was vigorously supported and well documented by her partner Tommy on  “The Help Amanda Denton Get Rehabilitation Page” on Facebook.

Sadly, Amanda passed away last Saturday.

Hundreds of expressions of sympathy from people around the world have been sent to Tommy over the last couple of days. It will not take away the terrible sense of loss Tommy must be feeling but the knowledge that there are so many people thinking of him and Amanda might give him the bit of extra strength that he will need to get him through these difficult times.

Just a couple of years ago, Amanda’s case was highlighted by well-known Irish journalist Kitty Holland in an article she wrote for the Irish Times, “Brain injury rehab: ‘No one gave Amanda a chance’ – Woman’s partner is ‘disgusted’ at lack of ‘serious therapy’ after traumatic accident”. In the article he is quoted as saying that Amanda “never had a proper shot at rehabilitation”. And even today he wrote: “its not over I will dedicate the rest of my life highlighting the neglect in this country in Amanda’s name and wont stop till laws are made to stop it.”

Both Amanda and Tommy have been great fighters. I am sure that Amanda will never really leave Tommy’s side and will be there with him, supporting his struggle to make proper and adequate neurological rehabilitation for those suffering a severe acquired brain injury in Ireland a reality.

Here is one of my favourite songs. It’s by Victor Jara and it’s about remembering Amanda…

May she rest in peace

Perdonare, fargeban, vergeven, vergeben, fragiban, pardon, forgive. All these words have the same origin and are based on the same idea and meaning. One I had never thought of.

Remit (a debt), pardon (an offence), also “give up” and “give in marriage” (past tense forgeaf, past participle forgifen); from for-, here probably “completely,” + giefan “to give” (from PIE root *ghabh- “to give or receive”). The sense of “to give up desire or power to punish” (late Old English) is from use of such a compound. Says an online etymological lexicon.

So to for-give has to do with giving up (something) completely, it has to do with renunciation, relinquishment, even sacrifice. It’s a truly noble act. And one that probably prevents one from going insane, at least in some cases I’m familiar with. Unfortunately.

Funny enough, or maybe not, it was the Pope who hinted at the etymology of for-giveness last night in Croke Park.

Made me think.

Maybe it didn’t exactly take the Pope to get me thinking about the idea of what forgiveness really means, but he did. Last night was a really brilliant night out for us. We got tickets from friends and friends of friends who really went out of their way to make this possible. We got pretty close to the stage on the pitch because of some caring and friendly people But it’s the idea of forgiveness, of trying to be more humble, of giving up a bit of my pride, of moving away a little from the idea of being (always:) right, and instead to give it up, instead to liberate myself of stuff I won’t be able to change anyways – that is the one thing that will most likely stay with me for a long time. And will hopefully bring some piece. Allowing for my energy to be directed to ‘good’ stuff. Like the light that’s shining through the cracks.

They played my favourite music: Songs from Pete Seeger, Leonard Cohen, Bob Dylan and Shane McGowan. In Corke Park. For 82,000 spectators. And the Pope.

It’s too late and I am too tired to write much. About us going down to Croke Park to the concert organised for the Pope’s visit to the World Meeting of Families. I’ll be less tired tomorrow.

Just two things: We wouldn’t have been able to get in there with Pádraig’s wheelchair, had it not been for the generosity and help of some incredibly good people. And – when the Pope arrived in the stadium, someone with a voice pretty close to the voice of the late Leonard Cohen sang what must be one of the greatest songs ever, one of my all time favourites:

Whoever selected this song had not just great taste and knowledge of music, they also were extremely smart. There’s a crack in everything. That’s where the light gets in.

No truer word sung. Or spoken.