Woman with Union Jack mask

Brexit – Leaving EU: UK citizens to be tortured and imprisoned without trial

(Opinion)

In a recent article published in Prospect magazine and reported on by a number of news services, including Sky News in a piece titled “Leaving EU ‘Could Boost National Security’“, Sir Richard Dearlove the ex-head of the UK’s national security service, MI6 was reports as saying that Brexit could boost national security.

Sir Dearlove wrote:

“Brexit would bring two potentially important security gains: the ability to dump the European Convention on Human Rights – remember the difficulty of extraditing the extremist Abu Hamza of the Finsbury Park Mosque – and, more importantly, greater control over immigration from the European Union.”

So let’s break that statement down, it consisted of two gains:

  1. Dump the European Convention on Human Rights
  2. Greater control over immigration from the European Union

Dumping The European Convention on Human Rights

The European Convention on Human Rights is a really very important document. It is a key part of what the EU stands for, and it guarantees some pretty fundamental things, including:

  • Right to life
  • Right to a fair trial
  • Prevents torture
  • Prevents slavery
  • Provides rights to liberty and security for individuals

Some of these principles trace their linage back to the Magna Carta. Yeah – let’s dump that. It’s much easier to have national security if we can imprison people without a trial, and while they are there torture them. Dam pesky not being able to do that.

Greater control over immigration from the European Union

This would increase national security, but limiting movement of people anywhere usually does. By the same metric we could have prevented the London bombings by putting in place a passport control just north of London, or placing security at the gates of every tube station, It would have worked, but it makes life pretty horrid.

When I read the Sky article I didn’t read better national security, I read a security chief saying his job would be easier if he didn’t have to follow the law. The law is there to protect us all, removing it is a dangerous step. A stronger United Kingdom will not come about by reducing the rights of each of the citizens. Besides, what is the point in having strong national security if that security reduces the real freedoms that each of us take for granted.

The Sky article instead of being titled “Leaving EU ‘Could Boost National Security‘”, could have been titled “Brexit – Leaving EU: UK citizens to be tortured and imprisoned without trial“.

How not to deliver a wedding speech

11 years ago today, I woke with a hangover. As the room came into focus I looked about. Flash backs from the day before came before my mind, and the largest, biggest smile spread across my face. The booming headache was replaced with a serenity and happiness for which I felt immensely blessed.

I glanced at the table in the hotel room, it didn’t look a sturdy as the one upon which John Page, a family friend had danced upon the night before.

On top of the table in the hotel room sat a scrap of paper, it was the guide I’d given Robert Macdermott; a list of every memorable but wholly embarrassing event we had shared together at university. I’d requested that he would not use these, however in the speech he gave to the entire room of friends and family he hit every single one. The embarrassment of that event pinged lightly off my receding hangover.

I recall sitting at the top table the night before and looking out at a sea of friends and family. Seeing my Grand Mother’s smile as she sat at a table with my cousins, Uncle and Aunt.

I recall my father, still struggling with the effects of his stroke, standing to give a speech. My father had told me years before he took ill about what an amazing public speaker my uncle was. To my great surprise after my father spoke, my uncle stood and gave a truly inspiring, and humorous and captivating speech on the topic of “love”.

As I lay there on the bed the morning after the night before; I think some of my tiredness can be attributed, not to an excess of bacchanal, but the more mundane. My nerves had gotten the better of me and I didn’t really sleep the night before.

In the early hours of the morning I gave up trying to sleep and found myself in the hotel pool with David Bullock, and Rob.

But those nerves where nothing compared to what I experienced in the Church. Waiting at the alter with David, Rob, Stephen Melia and Stephen Airey, they kicked in big time.

Rob and David started trying to relieve my nerves my coughing and spluttering under their breath “don’t do it”. I don’t think that really helped.

Then, I saw my sister, Elaine in her bride’s maid dress, following that Orla, Ruth and Dawn, and eventually Emma and her father Aubrey. I got the biggest smile from Emma and my nerves relaxed. Well, they did until I shook hands with Aubrey, and his grip left me in no uncertain terms about the importance of the day. Little did I know that I would be tested in my new role as son-in-law quite so soon. I discovered that the walk to cut the wedding cake could pose the first really important decision of my marriage.

The wedding cake, a large chocolate cake had been transported with great care by a team of friends, including Elaine MacDermott and David Bullock. They had balanced that cake on their knees as, I in a little VM Polo had got lost on the back streets of Dublin – where every road, no matter which one you take, appears to be sign posted for the airport. While the cake had made it safe and sound to the Hotel, my travel from the top table to the cake stand would not prove so easy.

Emma had told me that the one thing she was most worried about, was tripping up and falling on our wedding day.

Emma, being closest to the cake, stood first and turned to walk toward it, and I followed. It was then that I saw her fall; the train of her dress extended in front of me as she fell away from me. In my mind, time slowed and a set of possibilities where quickly evaluated:
1)    Lunge for Emma and save her from the floor. In doing so I would need to step on the train of her dress, possibly ripping it.
2)    Let the dress survive, and let Emma fall to the ground, then pick her up afterward.

I the second I had to make this, I concluded that Emma would like to see out the rest of the day in her wedding dress more, than not falling to the ground. So with I stood, helpless as I watched Emma’s worst fear unfold in front of me.

I quickly helped her to her feet and hugged my bride. She started to tear up. With her back toward the sea of family and friends, she couldn’t see my hands. I looked over her shoulder at the first table of friends and with my hands behind Emma’s back I made the universal sign for applause. The room responded with gusto and Emma’s trip was met with a great cheer and much clapping. 

While Emma’s fear had actually produced a great big cheer. The same however could not be said for my speech.

Now I have to admit, my preparation for the speech on the big day wasn’t great. So when it occurred to me that I needed to give a speech I quickly borrowed a pen and a napkin and started scribing. The nerves did indeed return. In the best style of all groomsmen my new brother -in-law Stephen Melia did his best to ensure that my nerves were relaxed. “Just remember” he said and then referred to Emma’s tumble “you’ve already got Emma on her back”.

So I stood, and thanked everyone, we raised a toast to all the absent friends who were no longer with us, before I turned to address my new wife.

“Ever since seeing Emma walk down the aisle” I said, “I’ve been looking forward to getter her on her back, but never thought it would happen so soon.”

As I finished the sentence the entire room took a collective intake in breath, and silence befell.

Balls.

Then a cackle of laughter appeared, first from somewhere on the top table and then it appeared to spread across the room.

After the speeches concluded I caught a few words with Scott Lewis, he told me “Chris, when you delivered that line, I was confused, I thought ‘that’s funny but I don’t know if I should laugh or not’”. Scott continued “But then I looked up, and I saw your new father in law laughing hard and I understood it was ok”.

11 years later, I’d happily acknowledge that a little extra preparation on my speech would definitely have helped. But I wouldn’t want to change a single thing about that day. It is a day filled with some of the best memories, and warmest sensations of friendship and love. It is still one of the most amazing days of my life and was the start of a huge adventure with the most amazing women in the world.

Perfect Mince Pies

Hello Mince Pie Day

And tho it came to be that this day shall ever more be known as Mince Pie Day!

We all have foods we love and for me it is the humble mince pie. The smell of the mincemeat, the stickiness of the substance when it escapes the pastry and caramelises on the outside of the case are all reminders of the most awesome mince pies that my grandmother used to make. They evoke memories of Christmas past and time spent cooking with my Gran.

An abiding memory is the care pack of mince pies that my Grandmother sent to me when I was in my second year of university. A bloody great big box arrived, quite nicely battered by the Royal Mail, and inside where four dozen mince pies. I have to report that there were casualties, of the four dozen at least a dozen had succumbed to “transit torture”. But no matter; with pies these good even the crumbs were delicious! I safely stored then in the student kitchen.

Granny Scregg – The Most Awesome of Students

Now my grandmother was awesome, although she had never been to university herself she seemed to grasp the core essence of the experience. As I bit into my first pie I realised she’d laced it with enough scotch that it was making my mouth feel pickled. It made for the most awesome breakfast treat; screw the American beagle, or the French croissant this was the breakfast of champions; the great British mince pie! – with added fortitude by Granny Scregg.

Just as surely as the sticky insides of a good mince will leak out during the cooking process, news about my seasonal breakfast of alcoholic wonders got out.

The first I heard of this information leak was discovering that supplies of my carefully rationed mince pies had taken an unexpected hit; the box was half full. An inquisition was held and it was discovered that these pies had international appeal! – I knew my granny could cook, but these pies had made it onto the world stage! – Kingsley my Nigerian flat made admitted to enjoying them to.

In the spirit of full international cooperation I did the only logical thing I could, I hid them in my bedroom.

Unfortunately the close proximity of the mince pies to my bed resulted in my careful rationing going out the window and the remaining mince pies lasting just days rather than the projected two weeks.

Do It For the Love of the Pie… Man…

In that particular year, spurred I think by the student competition for the alcoholic mince pies my overall mince pie consumption shot through the roof. After gaining at least 1 stone (14 pounds or roughly 7kg) in weight that Christmas alone I decided that I’d better save the tasty yet modest mince pie for just the Christmas season.  From here Mice Pie Day was born. I embarked on a Mince Pie Fast which lasts from the 1st of January right through the year until Mince Pie Day – the 1st of December. Today I’ll be enjoying the my first Mince Pie of 2015… and the challenge every year is to find (or make) pies that can pickle your mouth like Granny Scregg’s did.

Predict that my twitter feed will feature at least one Mice Pie this lunch time.

Giving a little back

From the initial diagnosis of Matthew’s infantile spasms right through to providing support for his eye rolls post discharge the guys at Temple Street Children’s Hospital have been amazing. The time has come were we can now give a little something back, and perhaps help other children and their families that are suffering from neurological conditions.

It’s happened at least three times since discharge, but Mattie had had the odd eye role. At first we thought he was just messing with us, or perhaps we’d imagined it, and actually he was just playing. However I caught the second one on camera.

We were reading the Gruffalo book, and Mattie being a huge fan was loving every minute of it. His speech had come on fantastically and he was acting all super cute, pointing out the characters and what they were up to. I decided to a video to send to friends and relatives and it was just as I was recording that he had an eye roll. Thankfully I had caught it on camera. I was able to re-watch it with Emma and make sure that it wasn’t me imagining it.

Emma got in touch with the neurology department at temple street, and even though we were discharged they reviewed our footage and got back to us. They diagnosed these new eye rolls as a “benign tonic upgaze” which happens with all children on occasion. So nothing to worry about, although if they increase in frequency, intensity or duration we are to give them a call. It was great to get that support even though Mattie wasn’t actually a patient.

Giving Something Back

We thought it would be great to give something back to the hospital and in particular the neurology department. So Emma has signed up for one of  Ireland’s largest army assault style runs, it’s called Hell and Back. – The clue really is in the name. It would be great if you could consider supporting Emma and Temple Street by sponsoring her via this link here: http://www.mycharity.ie/event/emma_woodss_event/

Alternatively if you just want to watch the obstacles Emma is going to have to under take you can check out the event videos here.

 

TextQuick and the Power of Software

At first I wasn’t too sure what to make of it. An email explaining that a mobile application I’d written had changed someone’s life. But it turned out to be the single best piece of user feedback I’ve ever had and probably the best email I’ve ever received. It all started with an ultimatum from my wife, and a desire to create an app which would “scratch my own itch”….

Or continue to read the rest of this post over at Medium

 

Missing the Spectrum

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Mattie looking out of the Plane Window, doddie in mouth

World at his feet

I should have updated this blog sooner. It’s been over a month since Mattie was back at Hospital. In late April he returned for what was his final check-up with the Neurology team at Temple Street Hospital.

This check-up had been planned for a while. It’s not often that anyone actually looks forward to a trip to Hospital, but we were. We hadn’t seen any spasms, and developmentally Mattie has come on leaps and bounds.

Both Mattie and his big brother, Ben go to the same crèche. Some of the older boys in Ben’s class will horse around, with a little light pushing and shoving, nothing unusual just typical boy’s behaviour. On occasion it would get a little too much for Ben and he’d start crying. I dropped the two boys off one morning and one of the older boys from Ben’s class walked up to Mattie and pushed him. Rather than getting upset, as his big brother might, Mattie laughed, and then pushed back. It surprised the older boy who took a couple of steps back to recover, but before he could Mattie was toddling up to him to play again, and another push was delivered. Meanwhile Ben looked on in bewilderment. Watching the two brothers play, it would be easy on occasion to assume that Mattie was the older, and Ben the younger.

Ben and Mattie preparing to "Clothes-Line" daddy.. ok, they are actually holding hands

Ben and Mattie preparing to “Clothes-Line” daddy.. ok, they are actually holding hands

Apart from impressing his older brother, Mattie’s speech and coordination have all come along in leaps and bounds. At 2 and a half years he’s starting to string words together to form sentences, just tonight all he wanted to do was “Play Ben”. In fact the relationship between the two brothers has also grown stronger, and they play off each other, Mattie copying Ben, and vice-versa. If Mattie and Ben started coordinating their antics together, and working together more closely then Emma and I would be completely screwed!

Having seen such fantastic progress we were really looking forward to the check-up. Nervous, sure, but quietly positive that his check-up would be good and he’d get the all clear.

Perhaps I have a pessimistic tendency; but it is when everything seems to be going well that I notice things.

“Did I just see that?” – I said it out loud before even thinking about it.
“Yes” said Emma, “it could be just be him messing?” she suggested.
It was Sunday we were sitting at dinner when Mattie suddenly leaned forward, his chest against the table and his eyes rolled back into his head. Less than a second later he was back to normal, and happily eating his meal. – Or at least as happy as a “terrible two” year old can be.

It was worrying, but we’ve not seen it since, and repetition is the key in I.S.

On the day of the check-up Emma took him in to hospital. Emma managed to beat the Dublin traffic and arrived at the hospital before 9 am. However there was a long wait and Mattie, as any two year old would, got a little bored and fed up. However at just after 11:30 am I got a phone call from Emma.

“He’s discharged!” said Emma, “The next time they need to see him, is when he’s 6 years old!”.

They’d given Mattie a battery of developmental progress tests, all of which were positive.

“Your very fortunate. He appears to be one of the lucky ones” our consultant had said.

We are so very lucky indeed. That night we had a “treat tea”; with cake and treats for the two boys. Then once the two boys were safely tucked up in bed Emma and I celebrated with a bottle of sparkling wine.

Mattie has to return to hospital when he’s 6 years old for an eye test. This eye test will tell us if his vision has been impaired by the Sabril he took, we won’t know until then, and ultimately now there is little point in worrying about it. We’re just delighted to have been so very lucky indeed.

From a future that could so very much have been stolen from him, I now feel like he has the world at his feet, and everything to play for. Good luck son, now go get’em – your more than earnt your chance…

Mattie looking out of the Plane Window, doddie in mouth

Mattie looking out of the Plane Window, doddie in mouth

Mattie on the Santa train, eating chocolate with Mummy. Both have just spotted Santa walking down the train.

A Very Different Train Journey; Mattie’s Christmas

12 months ago the whole family enjoyed a Christmas steam train journey. It’s a fantastic trip organised by the Irish Train Preservation Society. Importantly at the end of the trip everyone gets to meet Santa. Last year Ben, our eldest son, had an absolute blast but in the middle of all of the excitement myself and Emma took turns holding Mattie as he shook with spasms. At the time he’d only just started his Sabril, was still bloated from the steroids he’d taken and suffering from conjunctivitis. The future felt very worrying. However, this year’s trip was very different!

Over the last couple of weeks Mattie has been weaned off Sabril, and is now medication and spasm free! At his last EEG on September 23rd there was absolutely no sign of hypsarrhythmia (the EEG signature associated with infantile spasms).

The routine of giving him his medication had become so ingrained in both of us that initially it felt very weird not to dig out the syringe and mix up his drug. A mental itch, like we’d forgotten something.

On the train this year both Emma and I were stretched trying to keep tracks on both boys. I think Ben believed he was on the Polar Express – we were just worried he would try to ski down the length of the train! – of course Mattie wanted to do everything his big brother was doing too! … Fingers in this, trying to eat that, stealing toys off his big brother…

Mattie had a blast with the on board carol singers. They walked the length of train bringing Christmas joy, and in between mouthfuls of chocolate and treats Mattie would try to join in, singing in only the way a nearly two year old can!

It was such a change from last year, and so much fun.

Mattie has come a long way this year and we are all delighted – he has achieved all of the things we were unsure he would; walking, talking and such a strong and funny wee personality. It is the best Christmas present we could have asked for.

We’re also hopeful that he will have escaped the worst of the Sabril side effects; vision loss. There is defiantly no sign he has any, but we won’t know until he’s much older but even if there is some the trade-off will have certainly been worth it. In the meantime the four of us have so much to look forward to.

Next year, Mattie will have one more check-up with neurology in April. Assuming he stays spasm and hypsarrhythmia free the hospital will discharge him. So far it’s looking good!

As you can probably tell from the older blog posts when Mattie was first diagnosed both Emma and I were shocked, a bit dazed, confused, and I think it’s fair to say a little scared. During the nights sitting beside Mattie in the hospital Emma and I would do what the neurology nurses recommended we didn’t; we checked the Internet.

“Whatever you do” said the nurses, “don’t google it. The Internet is full of all the bad cases, no one likes to write about the positive outcomes.” They warned.

Perhaps maybe, in April this blog will help counter balance the current weighting on the internet. I can only hope that in the future another parent, sitting beside their little one in the middle of the night, will stumble across this blog. I hope they know that they are not alone and the blog can help allay their worries a little.

Merry Christmas everyone.

Mattie returns to his physiotherapist!

Our last post closed with the wish that Mattie would walk into his next physio appointment under his own steam – well guess what? Our rock star baby did just that!

At our last visit (May) he was doing well but he still wasn’t sitting up from lying down or pulling himself up to standing. His physio gave us some very simple exercises to work on with him that would further strengthen his pelvic muscles and really help get him standing and walking independently.

In the three months between appointments it was almost as if Mattie knew he had something to prove. Once he started to realise he could pull himself up the transition to cruising furniture and tentatively letting go happened so quickly.

Mattie & Daddy

Mattie & Daddy

 

 

 

 

 

 

 

 

 

On Thursday August 14th we returned to the physiotherapist. Our physio appointment lasted approximately 5 minutes. Mattie’s physio was delighted beyond words with his progress . He is progressing exactly as expected – his gate was a little wobbly still when she saw him but everything, even down to how he places his feet is excellent. There was lots of clapping, cheering and delight for Mattie at his appointment. At the end I am delighted to report that we were firmly sent on our way (with instructions to come back should we ever have any concerns) and officially discharged from physio!!!!!!!!

Even in the few weeks it has taken me to write this blog post Matthew’s confidence in walking has just escalated. Now, in the morning, he wants to put his back pack on – just like his big brother – and toddle out to the car for crèche. We just couldn’t be prouder of him! And the best thing… he does it all with the biggest, cheekiest smile on his face.

Our final remaining hurdle is our EEG and Neurology appointment on September 23rd. At this appointment we will review with neuro to determine whether or not we can start to wean Vigabatrin. This will be a nerve wracking one but if Mattie can approach it with a smile on his face you can be sure that we will too.

Mattie laughing