PLEASE CIRCULATE WIDELY

All right – the idea of not shaving from last night’s blog is really taking off! (Have a look at last night’s comment:) — What would you think of a slight change of plan: start  on Easter Monday, and have the “Big Shave” the day of the raffle of the sponsored bike  in the autumn? It might make it easier to join if there is a (semi-)definite ‘end’-date?

I drove to Limerick this morning, as always really early to avoid the traffic. It was one of those really nice mornings, with the rising sun trying to break through the early morning fog, slowly revealing a blue sky in a crisp, clean air. Meeting colleagues, friends, and students in UL, being around the buildings, having lunch, checking the office — all was a really nice and reminded me of the privilege of the day job I took a break from.

Back in Dublin, I had a conversation with the therapist who was going to start working for An Saol from 01 April. Turns out she is not going to do it. So, I’ll start working on a job ad for a neuro-therapist tomorrow.

And — should you know of someone, or should you be someone, who would be interested in and enthusiastic about taking on this job of building up and leading the development of the An Saol Sara Walsh Therapy Services — please let me know!!!

Something I heard on the radio stuck in my mind. It was a quote by somebody who said that we don’t see things as they are, we see them as we are.

Someone today sent me to a link to a newspaper article with the headline:

Young victims living with brain injury in nursing homes due to funding crisis

When I looked it up, I realised that it was from 01 July 2013, just a few days after Pádraig’s accident. In the article it says that the waiting time for admission to the National Rehabilitation Hospital was 2 months — well, we were told that Pádraig had to wait a year for a place there.

Pádraig enjoying the sunshine in the back garden.

Something radical needs to happen.

Another Rising.

I had this crazy idea today: if I declared on Easter Monday that I won’t shave until we have the funds together for the proposed three-year pilot project, would there be people to join? – We’re talking about getting together 1.5 million euro.

Are you in?

Today was the last day of the Novena of Grace in Gardiner Street.

If you have ever been there, you’ll know the prayer to St. Francis Xavier, prayed each of the nine days by those who attend. There is a part that has always been especially important to me.

Each of the years I’ve gone to Gardiner Street, when this part of the prayer comes, I have had to think hard which favour I should seek.

There are very obvious, pragmatic ones. They change with the times.

Tonight, I realised that my prayer, the favour I’m asking for, hasn’t changed. Because it’s not a ‘hands-on’ miracle-type favour.

Ronan, Son, Hannah, Bill and Thi had organised a fundraiser for tonight in Kilmacud Crokes GAA Club. Four of those five friends met Pádraig once here in our house a few weeks ago. My guess is that their one lasting memory of that encounter is the moment when Ronan, who went to school with Pádraig, switched over to speaking in Irish with Pádraig provoking a huge smile on his face.

Tonight was table quiz night.

I went over to thank them all for having organised the evening – probably the first pub quiz for many of the students working with Ronan on the preparations for the night. I thought that I would most likely not know anybody there. And then, a lot of Pádraig’s friends turned up and made the night a really special night.

Not sure who came up with the questions, but they were extremely difficult – even to read some of them out was at times a challenge for the great MC for the night.

Thank you to all who put such an enormous amount of work into the preparation of tonight! Thank you also for all of you who attended the fundraiser – we promise to spend the funds wisely!

Here we are, trying to set up a service for persons with a severe acquired brain injury and we have to work our backs off to be even heard by the health service. They agree that this service doesn’t exist. They agree this service is badly needed. And instead of helping us to set it up, it’s almost impossible to be even heard. – Isn’t that mind-blowing?

We had ordered a bed and a mattress. Both custom-made. It took a few days to get the mattress. Today, the bed arrived. Turned out they got the measurements wrong.

A phone call by the carpenter who was setting it up. A big apology. And a delivery date of next Wednesday. That easy.

The bed is for us when we stay with Pádraig during the night.

In contrast to this custom-made bed which took about 3 weeks to get, Pádraig’s (in)famous standing bed has not even been ordered, as far as I know.

You wonder who is responsible for these incredible delays that don’t cause a mere inconvenience – as in the case of our fancy new walked – but serious health problems for Pádraig, as evidenced by the community therapists who got so worried about Pádraig’s oxygen levels they rang Pádraig’s GP a week ago.

I know life isn’t perfect. And people aren’t perfect. But there must be a way to do better than this. Because ‘this’ is not only unacceptable, it is not only contrary to the UN Convention of the Rights of People with Disabilities, it is dangerous for our family members’ health. And I mean: really dangerous.

Please tell your friends and attend if you can!

In the end a few of Pádraig’s friends were available this afternoon to go on tour with us. Two of them came along, the others promised to join some other Wednesday. Just to clarify – no need to be able to drive yourself, what I need is someone to come along to watch Pádraig, just in case he needed help when I am driving.

Pádraig under the tree – on the way back to the car park.

When the Queen comes to Dublin, or when Obama comes to down – they stay in Farmleigh. It’s an old house in a big park and, at some stage, it was owned by the Guinness family. Reason enough for the State to buy it, renovate it, and then use it to show off.

We got the last tour of the house, all for ourselves. It was bliss. And a bit silly, in a good way. Which chair did Obama sit on? Did the Queen have dinner on this table? Who can stay here? How much is a night?

Turns out a night in Farmleigh is one of those things you cannot buy. Like most important things in life. Money might make the world go ’round, but the moment the world stops spinning, its use evaporates.

These Wednesdays with Pádraig’s friends are turning into something really enjoyable and important. Hard to put into words exactly why or how. But really important.

Just in case: I’ll be in Germany for my mother’s first anniversary next Wednesday so will be going out again with Pádraig the following Wednesday, 23 March – if you were available to come along… that would be great!

Up went Nelson, the pillar on Dublin’s O’Connell street, today 50 years ago.

A little time later, the army installed another explosive device and, this time legally and controlled, blew up what had been left by the first bomb. Doing much more damage to the buildings in the neighbourhood than the original bomb had done.

Few, if any, regretted that the pillar, a symbol of British occupation, had gone. In fact, there was public support for getting rid of it, there are people saying today they had thought about blowing it up themselves.

Tomorrow, I’ll be going out with Pádraig at 2.30 – anyone free to come with us (I need some help to drive with Pádraig)?

We might make it down to O’Connell Street and have a look at where the pillar once stood.

What had been built for eternity vanished from the face of the Earth. In a few seconds.

It’s more difficult to get out than to stay in. Only that ‘life’ happens outside.

This morning, we needed to ‘negotiate’ with a brick layer to get out of the house — our side entrance is being widened a bit to make room for Pádraig’s wheelchair.

We went to Croke Park to attend a ceremony in which an Irish flag was given to every post primary school in Ireland, as part of the 1916 (Easter Rising) celebrations. (This year, Ireland is celebrating 100 years of the declaration of the Irish Republic.)

It must have been the coldest morning on record. And the wheelchair spot in Croke Park must be the windiest and coldest spot in the whole of this magnificent 80,000 seater stadium.

Notwithstanding the cold, it was brilliant morning. We saw the President arriving with a motorcade of what looked like two dozen motorbikes. He gave a great speech about the vision the signatories of the proclamation had for the Republic they declared that Easter Sunday. And how much of this vision still remains to be realised.

Ryan Tubridy, one of Ireland’s best know broadcasters was leading us through the different parts of the ceremony. Seo Linn and the army band were playing. The national anthem was played. An actor explained what the ‘inventor’ of the flag Thomas Francis Meagher had in mind when he came up with the idea of the tricolour.

It was a brilliant day. For Pádraig and myself the first event we attended as part of the 1916 celebrations. – And tonight, we watched it all again on the telly.

On the way back up Clonliffe Road, crossing Drumcondra Road, and walking up St Alphonsus Road, I was thinking that everybody who doesn’t know Pádraig yet will get to know him around here. We will be out and about. How brilliant is that?

PS: Any ‘volunteer’ for the outing on Wednesday afternoon, at around 2.30, for about 2 hours?