When I got up this morning, I remembered in horror that last night, I had finished, all by myself, a whole tub of ice cream. I also remembered that it had felt really good when I did it. I had opened the tub just to get a little bit of the taste, cold, creamy, refreshing, filling ice cream, rounding up dinner. – Have you ever done anything like it?

I blame the long run of last Sunday and the drain on my body for my craving of the sweet, sticky, full-of-calories stuff. Wholesome food, healthy and sugar-free is what one should it.

Should. But doesn’t. — Seems to be a theme in life. — Should. But doesn’t.

I’m sure people have written books about this. How is it that we know what is right but don’t do it?

Pádraig had a double music session today. Thoroughly enjoying both of them. The first one in the large auditorium of St Pat’s College (now DCU) at lunchtime with a range of different styles of music. Tapping his feet along the traditional music, moving his mouth and lips when he recognised songs by the choir. Maybe that session served as a warm up because he did really well later in the afternoon with his music therapy, holding the rhythm of the songs over a long time, tapping his feet against a tambourine.

We had a birthday in the family today and all got together in the evening to have a really nice meal, followed by a bit of singing in German/English/Irish (all the same song:), and the birthday cake. Being together, sharing the same food, remembering who had been around at the original birthday and how it all happened. Checking our own memories against that of others. Re-affirming and consolidating the ‘true’ story of that birthday. Magic.

That’s how it should be. Should.

You wouldn’t guess what this is. I had never in my life seen one. Not even heard that they existed.

The other day, I saw one for the first time. A small cabin that moves up along a pair of rails into the room on top. When the lift is upstairs, you wouldn’t see in the downstairs room that there was a lift, unless you were looking for it. It’s a brilliant option if you don’t want a big extension but instead use the upstairs with a wheelchair.

We went swimming this afternoon and Pádraig floated in the water for the first time almost by himself, just supported by some floats. He relaxed almost completely and, also for the first time, used his arms and hands to move. And then there was, of course, the walking across the pool bit.

I have been thinking more about the necessity of holding people to account who ignore the needs of persons with a severe brain injury.

Toddler exposed to aggressive care in creche awarded €25,000 damages.

But what about patients who get injured, get dropped feet, and contractions – purely because of lack of appropriate care?

It was a long, very full day today. So many things happening, I can’t remember half of them. What I do remember are just a few things…

The kindness and generosity of people I hardly know but who I feel I have known for years. It’s something I had never had the privilege to encounter ‘before’. It’s almost out of this world but more real than a lot of the stuff people call the ‘real world’.

When a new health professional came to the house today and said it was unbelievable: reading Pádraig’s file and meeting him was as if they were dealing with two different people.

The incredible determination of young people and their families to get through the toughest of times, supporting each other, not taking the ‘default’ as an acceptable ‘solution’ when they are going through the brain injury wards in Irish hospitals – having met one of those families again today, traveling back and forth in my own memories, knowing that leaving them without the support they need is, at the best, negligence.

Having had a meeting with professionals who are going to help us to refurbish premises for the An Saol day centre in the FABrík in Glasnevin.

Not having heard from the state agency who has promised to fund our project, for months without an explanation.

It’s mind-boggling.

Sleep in. Trip into town. Nice weather. Roasted chicken for dinner. A spin on the MOTOMed. Sounds like an ordinary Sunday? For Pádraig it was pretty extraordinary because most of what he did today was not something he was ever supposed to do. – I know it might get a bit tired and repetitive saying this all the time. But it is worth reminding myself (and whoever reads this) that what sounds so ordinary and almost boring is nothing but.

I got up early this morning and found out when people say ‘hello’ or ‘good morning’ to you when they jog by. Or who says it. There are definitely more people greeting you with a friendly smile, the earlier you are out for your early morning run. Especially on weekends. That’s when people are in good humour, they feel happy and privileged running along the seafront into (or out of) the rising sun. And there is a tendency of older males being more communicative than younger females – but, that can be just me attracting encouragement from people who know what I’m going through:) It was 32k today, the last of the really long runs before the Hamburg marathon at the end of this month. And I can’t say it was a doddle.

A bit like life.

It was one of these really scary moments when we decided just to go for it. So we packed the back, got Pádraig and half of the family in to the car and went off to the swimming pool. Not the one on the South side of Dublin, but one on the North side that had been closed up to recently. Pádraig had learned to swim here. But he had never been there after the accident. We had rang ahead of our visit, but we hadn’t really checked it out.

The usual happened. There was no stretcher for Pádraig to change in the men’s changing rooms, but there was one in each of the women’s. Don’t ask me how, but with the incredible understanding and support of the staff, we managed.

And Pádraig had his second swim this week.

I didn’t say it to anybody because it sounds so ludicrous – but what I thought was that if he continues like that, he’ll be back in the water at 5 in the morning 5 days a week. Sounds ridiculous? – Well, had someone told me that he would go twice a week to two different pools a few months ago, I had told them not to be ridiculous.

sdfsd

There are days that are just uplifting. Today was such a day.

In the morning, we had a really good therapy session with Pádraig standing in his standing frame, with no back, just hip support, pushing his upper body forward and pulling it backward a few times over a giant ‘peanut’ all by himself – he took his time and the movements were very slow, but he did it. No once but a few times.

At lunch time I went out to swim in the grand final of the Corporate Swim a Mile Challenge organised by Swim Ireland. Our team didn’t quite know how we made it into the final but – we reached it and spent hours and hours getting ready for it: from a complete body wax of one of our team members, to an underwater Zen session of another, to top professional equipment (towel, shampoo, togs, goggles and all) of a third. Our forth team member didn’t need any of that and did it all in her sleep. In the end, we came in second (last) but were honoured with a special commemorative medal! My very first ever swimming medal!

Later in the afternoon, I met a truly exceptional woman who had recently lost her husband having looked after him for many years and who shared with me the ups and downs of her struggle. She is a true hero, though I know she wouldn’t see herself as one.

The day ended with the visit by two exceptional friends who joined us for dinner: tapas, paella, and brilliant company, with Pádraig on the table, really happy for having some nice food and loads of laughs.

All this: medals, food, company and laughter is what life is all about. – It never lasts, but stays with us forever.

And is something to be truly grateful for. Every day.

Head is coming down towards the keyboard when I intent to type. I’ll leave it for today with the news that Pádraig continues with his spelling efforts. Thee friends and myself will be ‘swimming for a mile” in the *finals* of the relay race at 1pm.

We are working with Pádraig on spelling words. We ask him things and encourage him to respond with words he spells by pointing out letters of the alphabet organised in quadrants.

Today, for example, we asked him how he was feeling. He pointed out a ‘G’, followed by an ‘O’, and another ‘O’, which is when we guessed the last letter.

It seemed as if what we were teaching Pádraig was working.

Just being back from Blanes, we then showed Pádraig the holiday snap below and asked him whether he knew where that place was.

He said ‘yes’ and started to spell ‘B’ — ‘R’ — which is when we were about to stop the exercise, but decided to let him finish. He continued: ‘A’ — ‘Y’.

While we had thought he had got lost in the chart, he was, of course, perfectly right. The beach on that picture looks exactly like the beach in Bray, just outside of Dublin.

Turned out that we were not teaching anything to anybody here. We were being taught a really important lesson by Pádraig about how we are approaching things, about our assumptions, about our perceptions. Pádraig had no idea that we had taken that picture. We knew we had taken it, we had shown it to friends, we had commented on it. But never with him. And in this situation, and from his perspective, what we were doing when we asked him whether he knew where that place was — was playing the “Which place is shown on this picture”-game that he was happy to join.

He was right. We were wrong. — And he taught us, and we learned from him a really important lesson. Think twice when making any assumptions based on your very own frame of mind during your communications with others.

I took a break from running today and joined a brilliant swim team taking on Swim Ireland’s corporate challenge to swim a (relay) mile with some friends. I hadn’t been in the water for months and was so proud that I didn’t drown during the swim. While we didn’t quite win, we believe that we made it into the final and have been monitoring our email all night as we expect an urgent communication from Swim Ireland inviting us to compete in the grand finale of this highlight in the official Irish Swimming calendar. In the meantime: thank you to my friends-in-swimming who didn’t show any sign of embarrassment for having a lame duck in their team. Fair play!

Finally: Ba mhaith linn ár mbuíochas a ghábháil le clann ó Choláiste Eoin as ucht an bhronntanais fhláthúil a bhronn siad ar Phádraig inné. Cuirfidh sé go mór lena shaol.

We got up at 4am Irish time, had a 2 1/2 hour bus journey to Barcelona Airport, and were stopped in our tracks by a lady at the check-in who decided we had to pay for Pádraig’s case containing his supplies – something that had never ever happened ever before. While I stood back, having got very close to a melt down, we established via the sales desk that if we could supply a doctor’s letter stating that Pádraig required special supplies, they would carry his bag free of charge.

For a moment I thought we were in Germany. Usually, it is Germans who need a letter stating the obvious. (No offence intended to my German country fellows:) (And no offence intended either to any Spanish reader:) We have such a letter but didn’t carry it as we never had to show it – even in Germany!!

So we paid 50 euro for Pádraig’s bag. And this afternoon, following a tweet I posted about this, Aer Lingus kindly agreed to refund the 50 euro but reminded me to carry that letter next time! – Fair play to Aer Lingus who, it must be said, have always gone out of their way to make Pádraig’s travels as easy and pleasant as possible.

Having boarded the plane, we stood on the tarmac for over an hour waiting for the rain in Dublin to clear. The easiest part of the journey was the flight. Having arrived in Dublin, we waited for another hour to get off the plane. The special assistance crew at Dublin Airport must have been incredibly busy this lunch time! Very tired, very stressed and very much later than planned, we grabbed our bags from the belt, got into the car and drove home. Only to discover, that one of the bags we had grabbed was not ours.

So I brought it back hoping we could do a straight swap. Unfortunately, however, the owner of the bag we had picked up, had not picked up our bag. So while they were happy to get their bag back, ours is currently filed as missing.

Are we happy to be back home? We are. While travel is good and full of adventures, it’s good to be back home again (don’t klick on this link unless you are ready for some country and western from John Denver:).

Are we missing the sun, the soft warm wind on our faces, the walks, the mediterranean, the tapas, the people filling the walk along the sea, the noise of the sea at night….? Of course.

I must be honest. I don’t understand people and organisations who promise funding, who promise signatures on agreements, who promise to get back to you  – and than have to be reminded again and again and again, have to be asked about what is going on and sometimes get back and sometimes don’t. I was thinking: I have some dignity and self-respect left. I don’t need to get down on my knees and be grateful to be dealt with at least business-like by people and organisations that are being financed by me and my family. I was thinking: It’s ok to deal with hustle, I know maybe better than others that life is not hustle-free. But there is hustle that could and should be easily avoided. We all have enough of it as it is.

It felt like just another day in paradise today with blue skies, almost perfect temperatures and not a bother around.

Even the ‘hole in the wall’ looked like the flight deck of an A380. It offered withdrawals in 16 languages, worked contact-less, and had a build-in video camera to record who was taking the money.

We found out that Blanes is part of the Republic of Catalunya. And above all, Pádraig was really really happy. Being outside most of the day, eating all this wonderful food and trying out different kinds of drinks – we’ll miss it.

Because today was our last day. We’ll have to get up again in the middle of the night to catch a very early bus that will carry us over more than two hours to the airport. We’ll be part of what they call in Spain, following Semana Santa, ‘operación retorno’.