After hours
26/01/12
After Hours
by the Velvet Underground.
One, two, three
If you close the door
the night could last forever
Leave the sunshine out
and say hello to never
All the people are dancing
and they're having such fun
I wish it could happen to me
But if you close the door
I'd never have to see the day again
If you close the door
the night could last forever
Leave the wine-glass out
and drink a toast to never
Oh, someday I know
someone will look into my eyes
And say hello
you're my very special one
But if you close the door
I'd never have to see the day again
Dark party bars, shiny Cadillac cars
and the people on subways and trains
Looking grey in the rain, as they stand disarrayed
oh, but people look well in the dark
And if you close the door
the night could last forever
Leave the sunshine out
and say hello to never
All the people are dancing
and they're having such fun
I wish it could happen to me
Cause if you close the door
I'd never have to see the day again
I'd never have to see the day again, once more
I'd never have to see the day again
After Hours
by the Velvet Underground.
One, two, three
If you close the door
the night could last forever
Leave the sunshine out
and say hello to never
All the people are dancing
and they're having such fun
I wish it could happen to me
But if you close the door
I'd never have to see the day again
If you close the door
the night could last forever
Leave the wine-glass out
and drink a toast to never
Oh, someday I know
someone will look into my eyes
And say hello
you're my very special one
But if you close the door
I'd never have to see the day again
Dark party bars, shiny Cadillac cars
and the people on subways and trains
Looking grey in the rain, as they stand disarrayed
oh, but people look well in the dark
And if you close the door
the night could last forever
Leave the sunshine out
and say hello to never
All the people are dancing
and they're having such fun
I wish it could happen to me
Cause if you close the door
I'd never have to see the day again
I'd never have to see the day again, once more
I'd never have to see the day again
After Hours
A beautiful burden
26/01/12
I heard Herbie’s voice for the first time in a month today, on a short video clip of him running up the beach. Within that short clip he contained such joy and enthusiasm. Herb would always express himself excitedly with cry’s of joy and laughter and flapping his arms. He was never hard to please and held that childish wonderment, that unfortunately one grows out of.
I know he was hard work and it was the incessant enthusiasm that was so tiring but without him, life is too quiet.
He was our beautiful burden.
I know he was hard work and it was the incessant enthusiasm that was so tiring but without him, life is too quiet.
He was our beautiful burden.
Silence and distraction
22/01/12
The stillest of silences invades our lives. A heavy thick silence perpetuates everything we do. Except for the distractions of Nella, whether that is organising her school or answering her questions.
“Can a shadow get hiccups?” or “…how did my tears came out all on their own?”
She has generally coped amazingly so far. She has expressed her loss on occasion, her confusion is also apparent. Whenever things get too melancholic or I am unable to answer her questions we try to talk about all the good times we had, or the funny things Herbie used to say.
“I don’t want the dinner cooking! I want it in my tummy”
The days are exhausting though, followed by the restless aching silence. All the thoughts, all the preoccupations in my head — round and round, continually. To put an end to the quiet, to break it up and disperse it, to pretend at any cost that it isn't there. Ah, but it is; it is there, in spite of everything, underneath all the silence and distractions.
“Can a shadow get hiccups?” or “…how did my tears came out all on their own?”
She has generally coped amazingly so far. She has expressed her loss on occasion, her confusion is also apparent. Whenever things get too melancholic or I am unable to answer her questions we try to talk about all the good times we had, or the funny things Herbie used to say.
“I don’t want the dinner cooking! I want it in my tummy”
The days are exhausting though, followed by the restless aching silence. All the thoughts, all the preoccupations in my head — round and round, continually. To put an end to the quiet, to break it up and disperse it, to pretend at any cost that it isn't there. Ah, but it is; it is there, in spite of everything, underneath all the silence and distractions.
Herbie's funeral
22/01/12
Herbie’s funeral took place at four o’clock on 20 January 2012.
It was a small family funeral. However over 20 teachers and parents from his school attended. They closed the school in the afternoon so teachers and assistants could pay their respects. It was very overwhelming and beautiful gesture.
Our Eulogy was read, ‘Away in a manger’ and ‘Here comes the sun’ were played. We had packed his back pack with drawings, photos, a comic, some pencils and paper, a circle of wooden train track and some trains, a bucket and spade, a spare top and trousers, a banana, an orange, a lollipop (vanilla ice cream flavour) and a packet of crisps. Along with some roses we placed everything on the coffin, then left. It was a short ceremony and respectful. (Herbie would have hated it, being so quiet and having to be behave ;-)
Mirela and I would like to thank everyone from the bottom of our hearts. Love.
It was a small family funeral. However over 20 teachers and parents from his school attended. They closed the school in the afternoon so teachers and assistants could pay their respects. It was very overwhelming and beautiful gesture.
Our Eulogy was read, ‘Away in a manger’ and ‘Here comes the sun’ were played. We had packed his back pack with drawings, photos, a comic, some pencils and paper, a circle of wooden train track and some trains, a bucket and spade, a spare top and trousers, a banana, an orange, a lollipop (vanilla ice cream flavour) and a packet of crisps. Along with some roses we placed everything on the coffin, then left. It was a short ceremony and respectful. (Herbie would have hated it, being so quiet and having to be behave ;-)
Mirela and I would like to thank everyone from the bottom of our hearts. Love.
Eulogy
20/01/12
[ ‘Eine klein Nachtmusik’ Mozart Allegro by Concentus Musicus Wien & Nikolaus Harnoncourt ]
These may be the saddest and hardest words we will ever write.
The beginning was nine and a half years ago, but the end was recently, so we will start from the end.
It was the beginning of the Christmas holidays. Holidays we always spent with close friends and family. Herbie, our little sausage and Nella were very excited. It was the day before Christmas Eve. The big night was nearly upon us.
We spent Friday with Kai and Isaac, our amazing nephews. We played games, cooked bacon sandwiches for lunch, went to the park through wind & cold and treated ourselves with sweets bought from the corner shop on the way back home. We bought Fizzy Super Sour Gum & Refreshers and Herbie chose a packet of crisps, which we were pleased about as he was about to start a Ketogenic diet. In the afternoon we decorated the Christmas cake that we made earlier on. Everybody then helped cook roast chicken for dinner.
The next day was Christmas Eve. We spent every year at my sister's house, Malin & Julian have always made their home extremely welcoming for us. Herbie loved going to their because he believed he may get a sleep over, he would practically put his pyjamas on as he walked in the door.
Christmas was always trebly exciting as there were presents and food. We had another fantastic day with a visit from Santa, Swedish Smörgåsbord, some fantastic presents for all the children from Mormor and Baba. The 'Swedish christmas' part of our traditions. The only difference this year was that we have moved closer, so Mirela drove the 20 minutes to our new home.
Christmas Day, the English tradition. Up early, Herbie and Nella telling each other about their stocking presents. We had to get going as we were going for a walk with Bertie the dog. Then a delicious roast dinner, the last of the presents, christmas cake, mince pies & trifle. Herbie was delighted that he was allowed to have seconds and maybe even thirds. After games of cards, trains and hide and seek we set off home again that evening, with a car full of presents and full tummies.
The happiest moment of the evening for me and Mirela was the drive home that evening through the country lanes. We were listening to festive hymns, carols and readings on the radio. Nella had fallen asleep straight away but Herbie was awake, although sleepy too. As we drove, I heard him singing to himself quietly. I asked him if he was singing. He replied "Yes I am Daddy". We exchanged the most beautiful smile we will ever remember. He carried on singing "Away in a manger" along to the radio until we arrived home. Herbie took his presents, a farm and a new track to his room, and we couldn't resist getting it out of the boxes and setting it up. He wanted his stocking presents next to him as he went to sleep, perhaps because he knew there was chocolate inside. Herbie went to sleep late that night, happy and content.
[ ‘Away in a manger’ The Choir of Guildford Cathedral ]
The next morning was quiet.
All I can add is that Herbie's journey was totally unique. He made us all smile at least once every day. We shall miss all the laughs and giggles as well as the tears, blisters and tantrums... Most of all we shall utterly miss the sunshine he bought into our lives.
We loved him with every beat of our hearts. He loved us back more than that.
He left us the memories of nine and a half years with him and those three magical days we all had together. He doesn't feel any pain, sadness or loneliness. We are utterly devastated, but we have each other. We all need each other more than ever.
Hold the ones that are close to you. Then hold them closer still.
We would like to thank from the bottom of our hearts everyone who touched Herbie's special life.
Sweet dreams & thank you Herbie.
Love not tears.
Christian, Mirela and Nella
[ ‘Here comes the sun’ Nina Simone ]
These may be the saddest and hardest words we will ever write.
The beginning was nine and a half years ago, but the end was recently, so we will start from the end.
It was the beginning of the Christmas holidays. Holidays we always spent with close friends and family. Herbie, our little sausage and Nella were very excited. It was the day before Christmas Eve. The big night was nearly upon us.
We spent Friday with Kai and Isaac, our amazing nephews. We played games, cooked bacon sandwiches for lunch, went to the park through wind & cold and treated ourselves with sweets bought from the corner shop on the way back home. We bought Fizzy Super Sour Gum & Refreshers and Herbie chose a packet of crisps, which we were pleased about as he was about to start a Ketogenic diet. In the afternoon we decorated the Christmas cake that we made earlier on. Everybody then helped cook roast chicken for dinner.
The next day was Christmas Eve. We spent every year at my sister's house, Malin & Julian have always made their home extremely welcoming for us. Herbie loved going to their because he believed he may get a sleep over, he would practically put his pyjamas on as he walked in the door.
Christmas was always trebly exciting as there were presents and food. We had another fantastic day with a visit from Santa, Swedish Smörgåsbord, some fantastic presents for all the children from Mormor and Baba. The 'Swedish christmas' part of our traditions. The only difference this year was that we have moved closer, so Mirela drove the 20 minutes to our new home.
Christmas Day, the English tradition. Up early, Herbie and Nella telling each other about their stocking presents. We had to get going as we were going for a walk with Bertie the dog. Then a delicious roast dinner, the last of the presents, christmas cake, mince pies & trifle. Herbie was delighted that he was allowed to have seconds and maybe even thirds. After games of cards, trains and hide and seek we set off home again that evening, with a car full of presents and full tummies.
The happiest moment of the evening for me and Mirela was the drive home that evening through the country lanes. We were listening to festive hymns, carols and readings on the radio. Nella had fallen asleep straight away but Herbie was awake, although sleepy too. As we drove, I heard him singing to himself quietly. I asked him if he was singing. He replied "Yes I am Daddy". We exchanged the most beautiful smile we will ever remember. He carried on singing "Away in a manger" along to the radio until we arrived home. Herbie took his presents, a farm and a new track to his room, and we couldn't resist getting it out of the boxes and setting it up. He wanted his stocking presents next to him as he went to sleep, perhaps because he knew there was chocolate inside. Herbie went to sleep late that night, happy and content.
[ ‘Away in a manger’ The Choir of Guildford Cathedral ]
The next morning was quiet.
All I can add is that Herbie's journey was totally unique. He made us all smile at least once every day. We shall miss all the laughs and giggles as well as the tears, blisters and tantrums... Most of all we shall utterly miss the sunshine he bought into our lives.
We loved him with every beat of our hearts. He loved us back more than that.
He left us the memories of nine and a half years with him and those three magical days we all had together. He doesn't feel any pain, sadness or loneliness. We are utterly devastated, but we have each other. We all need each other more than ever.
Hold the ones that are close to you. Then hold them closer still.
We would like to thank from the bottom of our hearts everyone who touched Herbie's special life.
Sweet dreams & thank you Herbie.
Love not tears.
Christian, Mirela and Nella
[ ‘Here comes the sun’ Nina Simone ]
Stay young, stay foolish
15/01/12
To famously misquote Steve Jobs in his speech to Harvard graduates where he said “Stay hungry, stay foolish” Herbie will forever stay young and foolish in my memory.
“Your time is limited, don’t waste it living someone else’s life. Don’t be trapped by dogma, which is living the result of other people’s thinking. Don’t let the noise of others’ opinions drown your own inner voice. And most important, have the courage to follow your heart and intuition; they somehow already know what you truly want to become. Everything else is secondary.”
Steve Jobs (February 24, 1955 – October 5, 2011)
“Your time is limited, don’t waste it living someone else’s life. Don’t be trapped by dogma, which is living the result of other people’s thinking. Don’t let the noise of others’ opinions drown your own inner voice. And most important, have the courage to follow your heart and intuition; they somehow already know what you truly want to become. Everything else is secondary.”
Steve Jobs (February 24, 1955 – October 5, 2011)
Guilt
15/01/12
The guilt I feel is rising. I failed him in so many ways. His illness, the management of his seizures, not hearing him on the night. Why did we not have a bed alarm? Why were we not informed he was high risk of SUDEP? Why did we not take more notice of the throat infection? Why is he not still here with us? I failed him in so many ways otherwise he would still be here.
Early on in his diagnosis we decided we would not wrap him up in cotton wool instead we would try to live as normal a life as possible. Cycling, swimming, bus journeys were all some of his favourite things so we were determined to do as much as possible. Herbie was not disabled or epileptic or special, Herbie was Herbie, a little boy who loved to be just that. Did we go too far? Did we bluster through and not consider carefully enough how challenging this was for him?
We recently moved home to be nearer to my family, my Mum and sister essentially. This meant he had to change school and our routines were all disrupted. Then of course we had the Christmas holidays. I wonder if all these things combined were too much for him. I swear I would have stopped anyone of them if I had a feeling it was too much. But I really do wonder if it was all too stressful.
I figure I will be asking myself these questions for the rest of my life. I hope I will be able to forgive myself. I am really sorry Herbie. I know my best just wasn’t quite good enough but I really loved you with all my heart.
Early on in his diagnosis we decided we would not wrap him up in cotton wool instead we would try to live as normal a life as possible. Cycling, swimming, bus journeys were all some of his favourite things so we were determined to do as much as possible. Herbie was not disabled or epileptic or special, Herbie was Herbie, a little boy who loved to be just that. Did we go too far? Did we bluster through and not consider carefully enough how challenging this was for him?
We recently moved home to be nearer to my family, my Mum and sister essentially. This meant he had to change school and our routines were all disrupted. Then of course we had the Christmas holidays. I wonder if all these things combined were too much for him. I swear I would have stopped anyone of them if I had a feeling it was too much. But I really do wonder if it was all too stressful.
I figure I will be asking myself these questions for the rest of my life. I hope I will be able to forgive myself. I am really sorry Herbie. I know my best just wasn’t quite good enough but I really loved you with all my heart.
SUDEP
14/01/12
Sudden unexpected death in epilepsy (SUDEP)
Most of the time, people with epilepsy recover perfectly well after a seizure. A very small number of people die due to an injury that has happened because of a seizure. In some cases, there’s no clear reason why a person with epilepsy has died. If a person with epilepsy dies unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.
How often SUDEP happens
In the UK, about 602,000 people have epilepsy. It’s estimated that SUDEP causes about 500 deaths each year. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.
The causes of SUDEP
SUDEP has been shown to be connected with seizures, but the exact cause is not known. Research suggests that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. Very occasionally this may cause the person to stop breathing and not start again.
Risk factors of SUDEP
There is no way of predicting who will be affected by SUDEP. But the single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure which causes the person to lose consciousness. Their body goes stiff and then starts jerking.
Each person with epilepsy has their own level of risk of SUDEP. It can occur in people who have seizures very often or very infrequently. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP in people who are seizure-free is very, very low.
Here are some factors which may increase a person’s risk of SUDEP.
Having generalised tonic-clonic seizures
Not taking anti-epileptic drugs (AEDs) as prescribed
Having seizures that are not controlled by AEDs
Having sudden and frequent changes to AEDs
Being a young adult (in particular male)
Having sleep seizures
Having seizures when alone
Drinking large amounts of alcohol
Information from Epilepsy Action http://www.epilepsy.org.uk/
Most of the time, people with epilepsy recover perfectly well after a seizure. A very small number of people die due to an injury that has happened because of a seizure. In some cases, there’s no clear reason why a person with epilepsy has died. If a person with epilepsy dies unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.
How often SUDEP happens
In the UK, about 602,000 people have epilepsy. It’s estimated that SUDEP causes about 500 deaths each year. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.
The causes of SUDEP
SUDEP has been shown to be connected with seizures, but the exact cause is not known. Research suggests that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. Very occasionally this may cause the person to stop breathing and not start again.
Risk factors of SUDEP
There is no way of predicting who will be affected by SUDEP. But the single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure which causes the person to lose consciousness. Their body goes stiff and then starts jerking.
Each person with epilepsy has their own level of risk of SUDEP. It can occur in people who have seizures very often or very infrequently. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP in people who are seizure-free is very, very low.
Here are some factors which may increase a person’s risk of SUDEP.
Having generalised tonic-clonic seizures
Not taking anti-epileptic drugs (AEDs) as prescribed
Having seizures that are not controlled by AEDs
Having sudden and frequent changes to AEDs
Being a young adult (in particular male)
Having sleep seizures
Having seizures when alone
Drinking large amounts of alcohol
Information from Epilepsy Action http://www.epilepsy.org.uk/
Catharthis or Self pity
13/01/12
Is hard to know what is the right thing to do. On one hand the whole situation is intensely personal which we want to keep private, on the other there is an urge to tell everyone and share this grief. I am not sure anyone can relate to how it feels, I know I wouldn’t have before. I am not sure I understand how it feels even now. Clearly I know it is really difficult to accept so my thoughts swing from denial to fear to loss. I realise that this is going too take a long time to accept. I realise that new routines and patterns will have to replace the old ways of doing things. (this is really hard as I was generally content with my position and responsibilities, I knew where I stood and what my role was, now all that is irrelevant) This is where I become unsettled because all of that is insignificant to the devastating realisation that I totally and utterly miss him…. every smile or tear, the kindnesses and laughs, every silly thing and every gesture becomes a vivid thought and I end up in floods of tears.
Is it cathartic or is it self-pity… the truth is I don’t really care, I can only do as I feel is right, as each situation arises.
Is it cathartic or is it self-pity… the truth is I don’t really care, I can only do as I feel is right, as each situation arises.
A long road
12/01/12
The fact is I wake up sobbing and go to bed aching. If I get a moments respite during the day it is a privilege but then I feel guilty. I don't spend the whole day crying, it's more a case of disbelief, shock, realisation then an outpouring of emotion in some way or other. It may be tears, it may be black bile.
The three words that keep cycling through my head are 'I miss him'
Everything reminds me of Herbie. The sunshine, the rain, litter on the street, ice-cream, bicycles, shoes, the list is endless from the insignificant and mundane to the obviously personal. A memory, a thought, a shared experience is evoked in some way or other. I mentioned to someone that the blue sky reminded me of Herbie, they said 'that's lovely' I was horrified. If something as omnipresent as the sky makes me cry.
It's going to be a long, hard and lonely road and there’s no turning back.
The three words that keep cycling through my head are 'I miss him'
Everything reminds me of Herbie. The sunshine, the rain, litter on the street, ice-cream, bicycles, shoes, the list is endless from the insignificant and mundane to the obviously personal. A memory, a thought, a shared experience is evoked in some way or other. I mentioned to someone that the blue sky reminded me of Herbie, they said 'that's lovely' I was horrified. If something as omnipresent as the sky makes me cry.
It's going to be a long, hard and lonely road and there’s no turning back.
Sunday Half hour
02/01/12
Broadcast on BBC Radio 2 25/12/2011
Brian D'Arcy celebrates Christmas at Leeds Cathedral with festive hymns, carols and readings. Featuring the BBC Radio 2 Young Choristers of the Year 2011, school children from across the Leeds diocese, Huddersfield Boys' and Girls' Choirs, Bradford Youth Choir, and Leeds Cathedral Choir. Accompanied by the Metropolitan Brass Ensemble, organist Benjamin Saunders, and conducted by Christopher McElroy. Music includes O come, all ye faithful, In the bleak midwinter, Silent Night, and Ding dong! Merrily on high. Producer: Simon Vivian.
An excerpt from the service that we shared together.
Away in a manger
Brian D'Arcy celebrates Christmas at Leeds Cathedral with festive hymns, carols and readings. Featuring the BBC Radio 2 Young Choristers of the Year 2011, school children from across the Leeds diocese, Huddersfield Boys' and Girls' Choirs, Bradford Youth Choir, and Leeds Cathedral Choir. Accompanied by the Metropolitan Brass Ensemble, organist Benjamin Saunders, and conducted by Christopher McElroy. Music includes O come, all ye faithful, In the bleak midwinter, Silent Night, and Ding dong! Merrily on high. Producer: Simon Vivian.
An excerpt from the service that we shared together.
Away in a manger