Just realised that this is the first summer in many years that I’m spending at home. A whole new feeling. The really long hours of daylight, the cold summer days, the lush vegetation. It’s so brilliant for Pádraig to go outside, to have the doors and the windows open, to get the fresh air and the sunlight, to go out for walks.

This afternoon, I gave an invited talk at the UCD SmartLab Summer Spectacular about An Saol and met the most amazing group of academics doing the most incredible kind of research, all connected to assistive technology. It felt like the beginning of a beautiful new friendship with people who are not just experts and practitioners in their fields, they are also so incredibly motivated and enthusiastic about what they are doing. They “share a commitment to creative technology innovation for real social change.”  Thank you to the fabulous Prof Lizbeth Goodman for the invitation and the opportunity to spent some time in the company of some real special people.

They could be, maybe they are, Dreamboaters!

Two significant things happened today.

Focusing on the important one: We are getting help to push the An Saol Project up to the top. This is where it needs to be. A big thank you to those who are helping to make this happen. You are the Dreamboaters. And it floated like a dream. A sign of things to come. In the morning when we rise.

Da dadadada dada da da. — Pádraig —- Colours

Someone told me I was trying to do too much, I should make sure to look after ourselves (and myself), that An Saol would happen, sooner or later, and there was only so much one could do. Relax, they said.

Relax. Imagine.

What kind of impression was I giving? What did I look like to them?

A nervous wreck, tired, unbalanced, and a bit manic?

Is this all a bit too much?

How do you expect someone in my situation to feel and to be? I’ve never been the most relaxed, laid back, let-it-be kind of person. But what do you do and how do you live in the most extraordinary circumstances?

Relax?

Brendan O’Connor summed it up his Opinion piece in today’s Sunday Independent. (Click on the picture below to get to the full article or just read two quotes from it a bit further down.)

But there is a plague of heartbreak around this country among people and their families who have had their lives ruined by accidents and accidents of birth and accidents of fate. And those people work so hard to try and not let these things ruin them. They draw on reserves of love and the human spirit that most of us can’t comprehend. But the State and the system ruins their lives all over again. And they are bamboozled at every turn by doors closing in their faces.

The world deals some people a shitty blow and all too often the system then kicks them in the face all their lives. It’s a massive, out-of-control broken system that wastes money at every turn.

I know you shouldn’t wash your dirty linen in public. But here you are. I am so annoyed at my family. Last week, not sure if you’ll remember, I got a lesson in how to make the most delicious wholemeal bread. The two loafs I made under strict instruction were absolutely beautiful. Today was my turn to do it all on my own. Everything was in place, including the recipe. What did my family do? – They went out to the shops and bought bread, “just to be on the safe side”. I mean – are they for real??? Have a bit of faith!!! — In the end, today’s loafs worked out perfectly and the ‘shop bread’ went into the freezer.

Pádraig had two friends visiting him tonight. Together, we watched the first half of the European Soccer Final, before it all got too late and Pádraig had to go to bed. Portugal played brilliantly and deserved to win – for some reason,, I had not sympathy for eh French team…

What a great night out!

With friends and Bell X1 on in the Iveagh Park.

10 sec clips – do you recognise the songs?

Tomorrow, Pádraig will go to see Bell X1, one of his favourite bands, in the Iveagh Gardens. Here is a message that Paul Noonan sent Pádraig right after the accident.

When we rang Ticketmaster earlier in the week to get a ticket for Pádraig we asked for companion tickets (which are often given free or at a reduced rate to allow wheelchair users to attend concerts with their carers) we were told that in this case none were available. We had to buy three tickets – which is grand.

I sent an email to Aiken Promotions asking them would they help us with the tickets. And would they ask Paul Noonan if he could do something about those tickets. So far they didn’t reply – which they should have, I think.

Anyhow and anyways, I’m sure it’ll be a great night tomorrow. And I’m sure that Pádraig will really enjoy the music. Fingers crossed it won’t rain.

Today, Pádraig was kept really busy. A physio visit in the morning (one we had ‘organised’), a visit by the HSE dietitian, and a music therapy session (one we had organised) in the afternoon. Loads of activities.

Later in the afternoon, I met with who I hope will be An Saol’s first professional therapist. Which is when we will move from talk to action. And it’s action that is badly needed.

There are days when things are looking good. Today was one of those. Pádraig managed to put all his weight on one leg and relax the other while he was standing in the stand-up bed – when we asked him to do that. First with the left leg. Than with the right leg. It was unbelievable.

The other unbelievable thing that happened today was when his favourite therapist came in to confirm that the HSE had not only approved, but already ordered the computer that will allow Pádraig to communicate with us in an incredibly sophisticated way. It’ll take a bit of ‘setting up’, it’ll take a bit of practice, but – hey, that’ll be nothing in comparison to what he’ll be able to do. And the whole experience can be controlled by a switch, by his eyes, or a combination of both. – I know this might sound a bit strange but I truly believe that if we use this software and machine appropriately, it has the potential to really change his life, because this will allow him not just to select ‘content’, but to produce his own, and to communicate fully with us.

A good day. Finished off by the visit of two of his best friends. What else could you ask for?

Here’s the mother of all health warning. Actually, it’s an “allergen advice” to be precise. I found it in Dunnes Stores, at the fish counter. Do you see it? Whatever you may think, there is an undeniable truth in this ‘advice’.

You might think – well, isn’t this obvious? Hake contains fish!

Up to recently, I would have thought the same. But then I came across experts, professionals, telling me that there is a chance that one might choke when eating; there is a chance of swallowing something the wrong way, to splutter, when drinking; there is a chance of straining a muscle when exercising; and sooo much more. Basically, what they were telling me was: life is dangerous out there.

So what can you do about it?

Stay in bed, breathe through a tracheostomy, get PEG fed, take drugs (of the legal kind)?

We know that life is dangerous and, ultimately, only has the one possible outcome. Only a question of time.

Notwithstanding, we get up every morning. We take on life as if it was one big adventure. We live it to the fullest possible way. We eat, drink, move, go out, have fun – share our love.

Sounds like something really obvious? – Like: “hake-contains-fish” stuff?