The Sad Case of Charlie Makes me VERY Angry

This blog was supposed to be fun and a kind of diary of my son’s early years. Breaking new ground and trying new things etc… Largely this is exactly what it is. I have tried to steer clear of politics and the similar “real world” things. I know that I can’t protect him from the harsh realities of life forever – hence the slightly political posts I have made. I felt they were (and are) relevant to the lad’s future.

But this morning as I drove to work I was both saddened and angry with what I heard on the radio. Apologies. Here goes…

This is different. It is almost sinister and why I feel that I have to write it down while it is fresh in my mind. There are real bastards out there; ruining ordinary people’s lives. And I am not talking about your typical criminals – per se.

A young couple with a 10-month-old baby boy are being told that they have to let him die in hospital. Charlie has a rare genetic condition and the doctors say they cannot do anything for him. The parents want to take him to America for some form of “experimental” treatment or other. We all know this kind of thing happens frequently. It seems the medical care in the USA is far superior to ours in Europe otherwise why do so many people raise money for children to go there. And it is mostly children who go there. But let’s not get into that debate. The parents are even being denied their last wish to be able to take their son home to die. It beggars belief.

This is about doctors (apparently), the British legal system and the European court of human rights telling the parents that they must let their child die and that it has to happen on a certain day – today! Telling them that there is no alternative and that they cannot even try the American option.

The poor boy is fighting for survival on life support equipment and while there is hope, any chance, that something can be done the parents should be allowed to at least try. But no; they have been told that the machines must be turned off. These are the same type of people who deny old and severely disabled adults the right to choose death over life. The old and unable are denied the chance to “die with dignity” yet this is exactly what they are telling the parents of this young baby. That their little boy must be “allowed to die with dignity”. Unlike those old adults who want the right to choose their ending the poor lad has not even had a chance at life. Any life.

So who is really behind this? We are told “doctors” and “lawyers” have said this or said that… But where are the NHS managers? The doctors can only say that there is no more that they can do (in this country or hospital). Apparently they have said that they do not think the experimental therapy in the USA would work. They are entitled to that opinion but would they really ever deny parents the right to try some new treatment in another country? I seriously doubt it. Such things contradict their training and dedication.

Lawyers are following the law you might like to think. In this case what does the law have to do with it? Surely the real issue here is that the hospital – the National Health Service (NHS) – wants to free up the room/equipment. Naturally they think that if the doctors say they cannot do any more then the equipment and space should be made available to other patients. The parents only want to keep their child alive long enough to take him out of the country. Surely they should be allowed to do that? To have one last attempt at saving their baby’s life? They had even managed to raise a large sum of money in order to pay for the whole thing thanks to donations by thousands of the great British public.

In my opinion, it is not the doctors or lawyers who are to blame here. It is far more likely to be down to those with no discernable life skills. The bureaucrats working for the NHS. So-called “managers” who probably know nothing about medicine nor the law. They almost certainly possess no useful skills but are very good at playing the political games and, let’s cut to the chase here, bullshitting. Such people are paid large salaries to “manage” the hospitals.

Highly paid individuals contrive to tick all the “right boxes” – or so they think. The “safe” approach. The easy option. Follow the “rules” – if indeed there are any. But don’t – whatever you do – use a bit of common sense and decency. Heaven forbid! To me this has parallels with other, recent events in London where decisions were made by unskilled over-paid pen-pushers but this is not the place to go into that. Unfortunately such characters seem to be everywhere these days.

According to the press a hospital spokeswoman said: “As with all of our patients, we are not able to and nor will we discuss these specific details of care. This is a very distressing situation for Charlie’s parents and all the staff involved and our focus remains with them.”

So; there you have it. A faceless, nameless, pen-pusher working for the NHS has the last word. It saddens me greatly but more than that it makes me very angry. And it should make you angry too.

School’s Out – For This Summer

Dani left school just like any other day. Standing out from the crowd by politely saying goodbye to the teachers and assistants who help the children safely down the steps (as described in a previous post…). School’s now out – for this summer. By my rough reckoning he only has another 494 weeks to go. Approximately. Give or take a few weeks. But who’s counting?

It’s at times like this I think back to when every adult used tell me “School? It’s the best days of your life. Enjoy it while you can.” You know the sort of thing right?

I never really got that back then, and I still don’t if I am honest about it.

Having said all that at this young age most days are an adventure and Dani hardly has an off day with school. He has done extremely well considering. As I said in previous posts we never started full time school until we were 5 years old. Dani started two months before he was three and it really is full time – 9 to 5! I am really proud of him.

So what now?

What about this long hot summer ahead? Firstly I brought back to the UK yesterday. His mum has to work away and I have my (still) new job. That means that while I am at work next week Dani will be looked after by his nanna. Or will that be the other way around?

In between there will be trips to the Marbella with his Spanish grandmother and to the picturesque white villages in the mountains near Ronda with his grandfather. He will also be over in the UK for a couple more weeks later in the summer.

Best of both…

That is one way the benefits from having family in the UK. Many parents in Spain eager that their kids learn to speak English pay to send them over to summer camps and the like in the UK. This is one case where Dani has the best of both worlds.

Last Day of School

Another major milestone. Today is Dani’s last day of school for this his first year of full time education.

A soon as I received my start date for returning to work I had to book the flights to be back in Spain for this day. I had taken him to school and collected him almost every day in this, his first year. I definitely did not want to miss his last day. For me it will be equally as emotional as the first day. For him probably exact opposites.

The Time has Flown…

It only seems a few weeks ago that he started and I can still recall the moment that reality set in. When he realised that he was going to be there for a very, very long time. A lot has changed since then. He settled in nicely and has turned into a typical little schoolboy experiencing all the fun and drama of being in a huge prisonlike environment – albeit a day release version of prison. Things like conformity, group activities, playtime and even bullying. Well sort of. I still don’t believe kids of that age are actually capable of bullying. Anyway, more on that one to come in a (near) future post.

Noticing the Difference…

For all its faults, the positives outweigh the negatives and I am proud of how he has taken to school. Last night when I arrived he proudly showed me his workbooks for the year. The school sent them home with their schoolwork yesterday as clearly the kids will be too excited today. There was a noticeable improvement in his pencil skills. Huge in fact. When he started back in September last year he held the pencil like you might carry the Olympic torch or stir something with a big stick. Now he holds it correctly using his fingers to guide it and makes every effort to be precise. OK not every effort but certainly more of an effort.

I will go and collect him later and witness the sheer joy on his face as he says his goodbyes to everyone. Then it will be 12 long weeks before he sees them again.

Long Hot Summers…

Twelve weeks of summer holidays. It’s a long time. Back in the UK the summer hols are much shorter (probably about 6 or 7 weeks?) and do not start until mid-July. They also have week-long “half term” holidays. In Spain they save up all the holidays and use them in the summer.

This year June has been unusually hot in both Spain and the UK. Normally in this part of Spain the temperatures do not go above 40 degrees until July. Already they have surpassed that figure in June. Here in Spain with temperatures over and above 40 degrees being in school is very tough on the kids. It is no wonder they take as much time as possible for school holidays in the summer time. Half terms offer a great break but having to stop in school here until mid-July would be nothing short of torture.

Schools Out… (but not Forever)

I can remember only a few of my primary school final days. One that really sticks in my mind is walking out of the gates with the kids singing that Alice Cooper song “School’s Out, for summer….” Etc… That song was released in 1972 but the year I am referring to is probably more likely to be 1975 – my final year of primary school. A classic old Rock n Roll number; they still play it on the radio occasionally.

Oddly enough I seem to remember all my school summer holidays being warm and sunny. Out playing football or cricket all day. Cycling, skateboarding, fishing and camping out (in the garden). Surely we would not have done that if it was raining all the time? – as it seems to most summers these days in the UK. Maybe that’s what they mean by “climate change”? Nah! Don’t get me going on that one….

Showing my age – again. Hey! I never tried to hide it.

First Bike – Another Landmark

Yesterday we bought Dani his first bike. Things have changed since my day. There is a new type of bike now – called a Training Bike. There are no pedals and no stabilisers. Yes, I know it sounds more like a roller skate than a bike eh? Actually I quite like the idea. You can add pedals later but initially it’s all about the kids getting their balance. The theory being that working pedals is much easier than learning to balance on two wheels. Early indications are good. Dani is getting used to scooting along and lifting his feet. The big first fall is yet to come. Probably just around the next corner so to speak.

The Training Bike

My first bike…

I remember having my first bike. Similar to Dani’s but with pedals and stabilisers. I left it in the front garden one day, not long after mastering riding it without the stabilisers. Back then we lived on the big council estate in the town. It was robbed. My dad took me to the police station where they had a room full of recovered bikes. It seemed back then a lot thieves just nicked a bike to get to their next destination – maybe home – then just ditched them. We reported the bike stolen and they let us look for it in their recovered swag room. It wasn’t there and I remember crying with disappointment. To make me feel better my dad bought me a jigsaw puzzle. Hardly the same as a bike eh? But back then I loved jigsaw puzzles so the buyoff worked well.

I hope I don’t have to do the same with Dani. Although he would easily be bought off. When we were in the shop and he was supposed to be trying out his new bike he kept stopping to check out all the other toys and games they had on offer. Easily distracted? Definitely.

                  

Opportunists….?

Oddly enough while out training on his bike earlier I saw a man get off his motorbike, go into a shop to buy bread while leaving the motorbike running. There were not many people about but it still caught me by surprise. My first reaction was; “I bet he wouldn’t do that with a car”. Then I wondered; how many opportunistic thieves can even ride a motorbike? I wonder what the chance would be if he tried that where I grew up?

What a Fortnight

An eventful couple of weeks has come to an end. Now it’s the weekend and a chance to catch my breath.

My days of not working had to come to an end at some point and this is the end of my first week back in the workplace after almost 18 months off.

Before that Dani was over visiting his UK family and we went to a wedding in Norfolk. Our friends Phil and Sarah had a fantastic day and lots of people turned up to celebrate. The groom is a fireman and arrived for the wedding on a fire engine. But this was no ordinary fire engine. It was a beautifully restored 1931 Leyland Cub. It goes without saying that a certain little lad loved it. We all did.

At the wedding party the little lad kept going till almost 1am in the morning. Then he collapsed into a deep sleep before we could even undress him.

On the way back we visited an old friend of mine from my college days. I lost touch with Gavin while he was working in Germany but now he is back in the UK. As it was (more or less) on the way back from the wedding location we called in to see him and his family. It’s at times like this that you realise how old we are getting and it is a time to reflect on a couple of things: Why do we leave it so long to get in touch? How the hell does time go so fast? Time. The great enemy.

Gavin’s kids are grown up now – at least compared to Dani – but they still had a big box of old toys he could play with. Needless to say, Dani really enjoyed himself and even demonstrated his “super gecko muscles”.

 As if all that wasn’t enough the UK just had another general election that surprised just about everyone. Blimey! it’s getting as bad as Spain!

I should probably update the About page. Where am I going to find the time to write now? I will just have to try harder.