One reaction of some people to Pádraig’s accident has been to feel lucky. That it wasn’t their son. Some have told us that they have sons and daughters of Pádraig’s age. Sons and daughters who have been traveling. Sons and daughters to whom accidents like this could have happened but haven’t. Thanks be to God. 

 I had to think of this when I heard the news today that the boy of Pádraig’s age who had gone missing in Cavan/Leitrim over the past week or so was found. They discovered his body in the lake belonging to his family. Someone who was there with the family when they were told said to us that the moans, shouting and crying was unbearable. I don’t think life could be more cruel that this.

Tonight our daughters arrived to the village where my sister lives. Pat will be getting the train very early in the morning and they will all meet up to visit my mother. I’ll have a quiet day with Pádraig. 

I feel so lucky that he is with us, making our lives unbearable, difficult, complicated, fun in a strange way, full of humour, full of love, never giving up, determined to make this life work. 

 Today, he went on his longest ‘walk’ ever. It was sunny, it was warm-ish, there was life all around. 

 Just thinking – I am so tired and have so little time these evenings that I don’t manage to look up (good) German songs and things. But I’m determined to start doing it again:)

This morning marked the end of the beginning of our stay in Hamburg. Having removed all our stuff, and having cleaned the place, we had to hand over the keys and shand over our old apartment in Forbacherstraße to the “Genossen”. How reluctant we were to rent a place thinking that we might not stay in Hamburg very long. How full of energy and hope we were, thinking that with the right treatment, Pádraig would surely get back to gaining control over his body and his life.

At around noon, I drove down to Nordkirchen to see my mother. She is getting weaker every day. Each time I’m leaving her I think it might be the last time. It was a long drive back to Hamburg.

Pádraig was out of bed again today, trying to do his best to collaborate with the physio and his speech therapist. He is fine as if nothing had happened last night. I’m looking forward to the weekend with him and Pat, a lazy afternoon).

Have to go, my head is trying to hit the keyboard…

It was a bit of a ‘lively’ night last night. Didn’t sleep that much which had the advantage that I managed to see a dramatic full moon on the sky over Hamburg.

When the ‘Notarzt’ and the ambulance crews had left I was there wondering had I done the right thing. I had not the faintest idea of what was going on and why Pádraig had started to get into this situation where all his vital signs went into overdrive. In a different life and time, I would have pleaded with them to take him to hospital.

When the kids were small, we went to Temple Street Hospital for infinitely less important reasons. Last night I thought I knew what they could do for Pádraig in hospital and, luckily, the ‘Notarzt’ saw my point (she was a nice, experienced, calm, and mature woman) and agreed.

I was so reliefed when the shivering went down and then stopped, he calmed down, and the fever stopped going up. Because I’m not sure when, at which point, I would have made the second call to the emergency services which is when they most definitely would have taken him into hospital.

The way it worked out it was a long night. With a full moon. By the time I fell asleep, Pádraig was recovering, and I just couldn’t take anymore. When I woke up this morning I had to look at the picture I had taken of the full moon, and check for the spare key to the apartment door in my pocket, the key I was lucky enough to have kept in the car, to convince myself that the previous night had not just been a bad dream. That it really had all happened. Because Pádraig was just like he had been the previous morning.

— Thinking about it again now, I am wondering what the difference would have been, is, between a nightmare and reality. Nightmares can be worse than reality and reality often feels like a bad nightmare.

You should always keep your socks close by and your phone fully charged in case you have to go somewhere urgently and unexpectedly. You should also keep a spare key hidden somewhere outside the house in case the door closes on you – as they do in the most inopportune of moments.

We had a full day, Pádraig, today’s carer, and myself, with two therapy sessions in the morning, a spa foot bath, a go on the viva la motomed, and a few other activities. So when I sat down to have my lunch it was almost dinner time. The doors in the apartment were wide open. When I went in to Pádraig’s room to check on him, I’d say after less than an hour, I panicked.

His hands and arms were shivering, his nails were dark blue, and his chin and teeth were going clapclapclapclapclap like they do when you feel really really uncontrollably cold. First I thought I could just calm him down. Then it was gadget time: temperature, blood pressure, heart frequency, oxygen levels – most were wrong. His heart beat was so fast the machine I used to measure it couldn’t cope and went into overdrive. His hands and arms were shivering to much that the next machine came up with error messages complaining that it could not measure his blood pressure if he kept moving.

Eventually I called 120. Reluctantly. But I was on my own with Pádraig and I wasn’t going to take the risk. The ambulance arrived. The crew came up the stairs, found the door closed, and were going back down when I ran after them calling them back up.

When I ran out the door after the ambulance crew, I knew I was making a big mistake. The sound of the high security lock of the door to the apartment closing behind me was the confirmation. Now the ambulance crew was back, but we were all outside – me in an absolute panic, the crew getting ready to call emergency services to smash in the door. I asked them for 2 minutes as I realised I had my car keys with me and hoping I had left a spare key in the car. Called out the neighbours to let me into the locked underground car park and got the door key for the apartment out of the car.

Back up, crew and I in, wondering should they wait for the emergency doctor or take Pádraig straight down to the ambulance and then on to hospital. They waited for the doctor and the apartment got crowded with people wearing really unfashionable orange and yellow emergency jackets. Turned out that Pádraig’s temperature had gone up by almost 2 degrees in just one hour.

Just about, but only just about did they listen to me and left him here – with a word of caution to immediately ring if things got worse. While there were four emergency crew in the apartment, Pádraig got better: his nails started to go back normal colour, his heart beat still high but not dangerous, and his blood pressure coming back close to normal.

Nothing is like it was and it never will be. How vulnerable he still is. How things can change within minutes, literally, from being ‘normal’ to absolute panic stations.

It’ll be a tense night and fingers crossed, all will be ok.

But, just in case, I will keep my socks close by tonight, the phone fully charged, and a spare key to the apartment in my jeans’ pocket… Just when I thought these days had gone, they’re back. Like watching-a-movie-time all over again. Because this just cannot be happening to you and your child.

No, I won’t write about the oil multinational tonight. And I won’t write about the “camino” and its famous sign. I am going to write about a secret treasure.

Second day with new carers and I am still wondering how it could all have gone so wrong the first time around. It’s still early days, I suppose, but so it’s clear that the two carers (and there are only two, not a dozen different ones) coming in now for 6-9 hours depending on the day of the week are really caring. They have also managed to give me some time and space to do all these things (work not being the least important of them) that I didn’t have for – is it weeks or is it months already?

Pádraig is getting on well with them two by the looks of it. There is much less stress, much more time and predictability. They are discovering each other’s abilities, strong points. The days are almost too short for Pádraig now between therapies and exercises. He does take it easy and slow. It’s a way of doing things we could all learn from, a slow speed (is that what is called an “oxymoron”?) that makes you see, feel, and understand things that otherwise just fly by.

Today, I had some conversations, direct and via email, that made me realise the complexity of our lives since Pádraig’s accident, at a mental but also at a very physical and pragmatic level. There are things we are dealing with now which we never new anything about, things we didn’t even know that they existed. There is an intensity, at a spiritual, mental, as well as physical level, which is out of this world. How can you share this, how can you try and explain it, how can you make people understand, if not make them feel what all this is like? You can’t, is the simple answer. Still thinking of Ciara’s poem and Markus’ song: nothing makes sense since then.

This is where the shell comes in, the kind that provides you with shelter, the kind that protects you form the environment, the type of shell that hides a treasure inside – the kind of treasure you’d do anything for. The type of treasure that pushes you to do things you never thought you were capable of. Sounds familiar?

Nothing Makes Sense Since Then.

‘s nach bhfuil ciall le tada ó shin.

How could it?

Listen.

Ciara’s words put into song by Markus. Genius.

Nothing Makes Sense Since Then.

‘s nach bhfuil ciall le tada ó shin.

Lazy Sunday afternoon – not for Pádraig!

Have you ever seen anything like it? Gives the idea of “going up” a whole new meaning!

He took it really well, but it was clear that we’ll have to do this a few times, taking it slow and easy, before standing up straight for a significant time will come natural to Pádraig again.

Why doesn’t get everybody one who needs it???

Pádraig’s new bed is something else. It’s so much more than a bed. He can lay in it, yes, but he can also sit in it and even stand. It’s really easy to use and, above all, it’s really long. I wanted to try it out today with Pádraig, to see how it would be for him to stand in it.

But I had got a phone call yesterday to say that my mother wasn’t well, so today I went down to see her and stay with her for a few hours. She really is not well and, in other circumstances, I would have staid with her. This time, that just was not possible.

I drove back to Hamburg, a trip of a little more than three hours, and I was listening to the noise of the wind and the other cars. My mind was wondering: what’s going to happen next? Is there anything left that could make life more difficult?

Can’t think tonight. Can’t write. Can’t even keep my eyes open. What’ll be next?

Between carers, suppliers of aids, doctors, pharmacists, court clerks and judges, therapists and administrators, Pádraig has been keeping a huge number of people busy. Today, it was “bed” time.

It took more than three hours and three people today to dismantle the old bed and set up the new one. The exchange of the lifter (for a week, just to see how it would work), got almost lost in an afternoon of people coming and going. Carer in the morning, followed by the physio, a short brake, speech therapy, and then bed and lifter exchange, before the late afternoon visit by carers let the day pass by in a flash.

The bed Pádraig got is a high-tech 2.30m especially made for him (because of the length) standing bed, together with a matching, especially made, 2.30m mattress. It’s an amazing piece of engineering. When I tried it out, it almost took my breath away. You wouldn’t think it but being lifted up from a lying position in bed to a standing position in one quick go is a huge challenge to your respiratory and coronary system

Pat arrived back to day.