It says 37oC on my phone. But, honestly, what would a phone know about the weather? It was built to make calls, not to be a weather station! Or was it?

Anyhow, I’ve arrived in the centre of the European heatwave. It must easily be above 40oC. That kind of temperature is unbearable unless, of course, you are on a summer holiday when you would be disappointed if it was any way else.

In Dublin, work on Pádraig’s extension is progressing. You can see where his new rooms are going to be, you can get an idea of the dimensions. In my mind I can see him moving in.

Next week, if all goes according to plan, the floors should be finished and the bricklayers should get started. No one is giving me a finish date, but we are still aiming for September.

Back in Hamburg, the windows were closed and the temperature in our apartment was approaching 30oC – still considerably less than outside. Pádraig was hanging in there, taking in loads of water, bathing his feet and hands in water. This weather is not easy for anybody, for him it must be agony. That he is hanging in there, that he is able to handle it, is brilliant.

When I go to Dublin I always plan to get a good night’s sleep. In reality, it never works out. Mostly for the right reasons. Yesterday evening, I visited a family who very kindly allowed me to see their house conversion and the car they had bought for their son who, like Pádraig, has an acquired brain injury. They visit their son during the day, so we met late in the evening and by the time we said good-bye it was way past midnight.

It was so good to talk to these parents who became our friends, and to see and hear what they have been doing to build a life for their son, as independent and supportive as possible.

The previous night, I had met two young men and one of their parents, also our friends now, who told me about all the incredibly hard work they are doing to get the best care and therapy for their sons. The work they are doing is phenomenal. The conditions under which they are doing this work with their sons is unbelievably hard.

Every day of their lives, every day from the time they get up in the morning until they go to sleep at night, they do what they can to make the lives of their sons better, helping them to become more independent and self-determined.

What makes the situation almost bizarre is that they are doing this often, if not always, completely on their own. You would think there was a health system supporting their efforts. From the perspective of these parents this is often not the case.

I could be wrong, but I am getting the impression that parents of children with an acquired brain injury would like their children to be at home if at all possible – if only they were getting sufficient support to do so. They are not getting this support. What they are getting is nursing home care. Nursing home care for young adults. An oxymoron.

27479eeI could be wrong, but creating an independent life, as independent a life as possible, is what most parents want to achieve for their children. This cannot happen in institutions.

Today is Independence Day, the 4th of July. There should be an Independence Day for young people with an acquired brain injury.

We need to build a road to “An Saol – Life your Live”.

An Saol

 

 

 

 

PS: Any ideas how this logo could be improved? – Should it?

Today’s German Music Tip
Snaga, Mitternacht. This is classic rap made in Germany. These days, ‘rap’ is what the ‘Neue Deutsche Wells’ was some decades ago. It’s big.
What’s hot
Independence
What’s cold
Dependence without self determination
The German word/phrase/verse of the day
Alter, is das heiß!