Tuesday, 28 January 2014

Hilary, Hilary, where have you been? I’ve been to London to look at ... so many theengs! Part 1/2


Recently twenty-one years of life for two remarkable young ladies has passed by ... my god-daughters ... one now studying Psychology at Birmingham, while the other doing medicine in London.

 
Prunier champagne with a
spoon of caviar
For their 21sts – what to do ... something different was required ... I’d been down at the Natural History Museum in Kensington and for some reason (now I know why!) the tube was closed ...


... ok jump on a bus and trundle along to the British Museum, my next ‘station stop’ ... all British readers will understand the ‘station stop’ connotation – always said approaching a tube stop, and also on the trains ... often enough to be very irritating!

 
Caviar House, Piccadilly

But as the bus made its way along Piccadilly ... we passed the Caviar House – the light bulb moment happened – do they do gift vouchers? ... on my way back to Victoria (main line) station to get out of London ... I called in and asked said question.


Birmingham god-daughter had been anxious we should get together, but poor girl has had glandular fever, and then tonsillitis ... so was run down, behind on her studies, etc ...

 
Click and collect ... more likely check in
and order a light repast ... from the wide selection
of caviar on offer ...
... the best decision was to get some rest, enjoy Christmas and the New Year, catch up somewhat with the studies ... and then early in 2014 get together and use some of the vouchers ...


... last weekend was set – and off to London we went ... I’d booked a hotel ... so I didn’t need to leave early to get back to the south coast ... and of course we could make a real weekend of it ...


Medicalgirl and Psychogirl decided the date ... and after much texting, chatting too no doubt ... planned that a look at and stay over at the Medicalgirl’s house would be a good thing ...


themselves!
... then I had a spare hotel room and wondered if Psychogirl’s mother was feeling up to coming down – she also hadn’t been too well last year ... anyway things were perking up and mother came too – which was nice for me ... otherwise I might have been a gooseberry!!



Plans were made ... or left open – but were well met ... meet at the British Library after lunch ... two choices a free show, called Picture This: Children’s Illustrated Classics and an exhibition I wanted to see on The Georgians ...

 
Cafe set at the back of The King's Library:
George III's library - originally housed
at the British Museum, until the British
Library was completed to house it
... medicalgirl was running late so we paid and went round The Georgians – fascinating period of history (mind you aren’t they all) – then we met (and now we are four) ... in need of a cup of tea and a good gossip!


Visited the illustrated children’s books of the 20th century – I should definitely have spent longer there – Medicalgirl knew the bus to take ... as it was bucketing with rain ... and off to the hotel for a brief collapse and another tea - we are British ... !!


Put on our glad rags and hit the streets of London once again walking down to the Caviar House for our evening out – it’s rather nice being paid for with your own gift vouchers!
 
Tsarina
The background ... before I left for South Africa I decided to take my family – at that stage my mother, two brothers and one wife! out for a farewell supper ...


Having been wined and dined at the Caviar Bar ... this seemed a very good treat to take the family to ... for the fond adieu to their daughter or sister ... this was some decades ago - and that Bar is no longer ...


... rinse and repeat the process for these young ladies ... I typed up a colourful letter reminding them of some childhood ‘antics’ ... and saying that to complete the circle of the family dinner all those years I’d do the same for them in this their 21st year ...

 
Pata Negra
... the family remind me of the farewell dinner on occasions – as it was definitely something we would not normally do ... but it turned out to be a memorable evening.


So to conclude part one ... we had a fun Saturday night dinner a la Caviar House ... it is a seafood bar – and my god-daughter is not too good with fish – and I hadn’t realised the menu in that respect is a little limited ... but for fish lovers definitely isn’t!


There was a ‘Pata Negra’ – traditional Spanish ham served with toasted bread and a mixed leaf salad – which thankfully satisfied Psychogirl ... and she tried a Caviar Spoon (well some of it!) ... and a small piece of my oyster ... I only had one!

 
Mine!
I had the Seafood Platter, MedicalGirl had the Tsarina (lightly toasted blini topped with crème fraiche, served with Balik smoked salmon and some selected caviar), mother had Shrimp Cocktail – consisting of Mediterranean shrimps, with succulent cold water Atlantic Prawns and freshly peeled King Prawns ... while Psychogirl had her Pata Negra ...


We had salads, side dishes, plenty of bread ... we each had a Caviar Spoon ... and were constantly asking for ‘more butter’ please ... as L said – it was delicious butter ....


Shrimp Cocktail
We had the house Prunier Champagne Brut – and got rather hooked on that ... I have to say it was delicious champagne ...


Well I’m recovering still ... we had a full Sunday and Monday, as L and I had a lovely evening together reminiscing and catching up – as we hadn’t seen as much of each other these last few years due to circumstances beyond our control ...


Petit Fours with our cappuccinos
... so the weekend came together ... part 2 to follow – and the girls are meeting up next weekend in Birmingham ... as Medicalgirl has a Psychiatry Conference and will stay with Psychogirl!!!


God-daughter’s mother, L, and I have plans to meet in March, but may well do before that as ideas were broached, which could turn out to be fun and collaborative ...


I don’t have many pictures ... but hope others will be sent down – for now ... I do have some!


It’s nearly evening here ... and now I’m feeling hungry ... sorry to leave you!


Hilary Melton-Butcher
Positive Letters Inspirational Stories


Monday, 20 January 2014

Love has Wings .... by Madelaine Clay


‘Sometimes the smallest things take up the most room in your heart’:  a quote by Winnie the Pooh ...
 
Scarlett Clay with her
son Knox

... so starts Madelaine’s film on her brother Knox, who has Cockayne Syndrome, and who I was privileged to meet last year.


He was born with this disease, he’s done nothing wrong – he’s about as innocent as they come ... one has to wonder – why?   Why, would this happen to such an innocent child and how does one ever react to a disease that takes life so quickly.


That’s what Madelaine wants to know: Why ...   Why Knox? Why other young children with CS? Why me?  Why us?
 
Scarlett's Butterflies
in the making for
her Etsy shop cards

When my mother was ill and I understood she could live ‘for years’ – I too thought why me?  Also why my mother ... who had done so much for others all through her life.


As Madelaine discovers ... the why me? turns into “ok – now I understand” ... their illness is for me to learn from, and then to help others understand, illness comes in all sorts of ways at all times of life – we know not when ...


Cockayne Syndrome affects a miniscule minority of people in the world ... but it affects many others ... and especially as they have a tragedy to journey along with ... there is no cure – only ease of symptoms as best possible.
 
Rusty-tipped at Florida
Butterfly Park

Madelaine realises she needs to find out the purpose for the disease ... before Knox goes ... while in the meantime she needs to spend as much time with him ... as every moment is precious.


Death is always real – it’s how we live life while we journey with our loved ones to their ultimate destination ... that shock that comes, which is expected, but is unexpected ...


... Madelaine wanted to find out what she and her family are going to go through when Knox does die ... it is a courageous film of enlightenment ...

Butterflies and
sunshine to bring
smiles all round

... to me there were parallels with my journey – the loneliness, the lack of comprehension – yet I was lucky that my mother and I could share those last years together as much as possible – it was not ideal, yet there was a lot of good that came out of our journey ... which continues on today.


Madelaine has found that the struggle is worth it ... there is some good coming out of her journey with Knox ...


... the friends she has met (in real life + via FB) through the Support Groups:


Amy and Friends Support Group in the UK, and the Share and Care CockayneSyndrome Network in the USA ... and being able to meet up at Morgan’s Wonderland, San Antonio, Texas – an Amusement Park for Special Needs' Children.

Sveva, Madelaine with Knox, me and Scarlett,
Amy of Amy's Friends in her wheelchair with
another star of the film on her lap

Through meeting other CS children, their parents, their siblings and associated friends and family, Madelaine was able to get perspectives on and insights into their lives ...


... and after having realised that all the CS children were essentially happy – they have friendly personalities – this was confirmed in her discussions with the specialist doctors, who thought it was a characteristic of the disorder.


So how are we to think about those serious illnesses we have in our families ... be they end of life, or at a much earlier time in our anticipated life expectancy ... what is that reason that we travel with our loved ones ...

 
Sponsors for the Amy + Friends
British Support group get togehter
2012 ... Scarlett's Art is Medicine
first on the list
... to teach us life is so short, so fragile ... each flutter in a butterfly’s life is but a moment, yet is so precious for their life-time ... for us too ...


... illness teaches us patience, to love our loved one, to enjoy life as it is meant to be with everyone we come into contact with ...


... for CS children: they want you to love them ... it is almost as though they know what’s going on ...


... this makes you think ... love is, it just is ...




L o v e   H a s   W i n g s ......


I hope that you will be able to spare some time for Madelaine and her film ... I know it is 29 minutes long – but frankly ... if you give it some of your time you will appreciate her words through the documentary she made for her brother.



Her words and the film will come home to roost sometime – I guarantee it ... if you allow these emotions in to your life ...


Madelaine is 18 – and I think has done an amazing job ...
Love Has Wings is an incredible testament to Knox’s life ... and her ability to work out for herself ... that reason why.


This is a courageous film made by a loving sister, and definitely worth a watch ... you will learn: I did.

  
Love Has Wings: YouTube:  https://www.youtube.com/watch?v=NiC9tYXdr0E

Blue Purple and Scarlett butterfly
c/o www.fanpop.com 

Scarlett Clay’s website: Blue Purple and Scarlett
“LoveHas Wings” Student Documentary ... the film is so professional and so deserving of recognition ...


FaceBook Page : Art is Medicine – Scarlett’s page as Art is Medicine ... in so many ways ...




Knox has gone to the Butterfly Heaven: Rest in Peace 14 July 2010 - 01 February 2014
With so many thoughts of love to Scarlett, Brandon, Madelaine, Sveva and Jack ... 

Hilary Melton-Butcher
Positive Letters Inspirational Stories

Monday, 13 January 2014

Ghostly reappearance from under the dustsheets, or perhaps via the Ghostly Escalator ...


... just in time to celebrate moving into my sixth year of blogging – which seems somewhat amazing to me ... I had no idea of the journey I was embarking on ...

to me!

... and a birthday today ... c’est la vie ...  another anno domini has passed me by!


The landlady has had some work done on my flat (apartment) and I’ve needed to live here while it’s going on – 

- now to remember what’s underneath those spreading splattered, dusty sheets ... the week ahead will be the big reveal – can I remember being a year older?! 

Ghostly tube sign

Ghostly escalators crept into the equation ... as my week was curtailed to expeditions ... ie escaping the noise and dust ...


... a visit to London was on the cards ... to see these disappearing escalators, whose innards were exposed for public viewing ... well I couldn’t find them!

Notice around the tube ... letting us
know that the Northern and
Bakerloo line services will rush by -
ghostly escalators will be replaced!

I collared a station line supervisor ... he looked at me in blank amazement ... he had no idea, and we wandered up and down a little, then he sent me off to the ‘super’s office’ ...


... stunned silence there ... they get strange requests, but not like this ... she walked me around too – but no joy ... so hence the title of the post “Ghostly escalators” ... 

Looking through the window to the ghostly
escalators that I could not find!
c/o Ian Visits Blog

... now they are blanked off, so I will never see them ... however there are workings within the Lloyds Building nearby ... but I didn’t have that much time ... another day I shall return: as I have to see those innards now!


Grey takes over ... the grey cells aren’t working so well, the hairs that are generously (not so in my case!) growing are now definitely pale silver ... ghostly escalators aren’t there ... then there’s a melting tube train – but that’s in its frozen state in Sweden ...

I now know where the Northern line tube went - a blog
hop across to Sweden and the IceHotel
c/o Ian Visits Blog

The IceHotel – the coolest place to stay in Sweden – yelping huskies haul you to the IceHotel ... it is 100 miles north of the Arctic Circle ... the musher’s voice calling low, guttural commands to his scampering dogs ...


... 90 minutes later they arrive at the IceHotel created each winter from ice and snow at a cost of more than £1 million, it simply melts each spring, a million pounds down the plughole ...


The River Torne - where the IceHotel
is to be found near the Norwegian border ..
which flows into the Gulf of Bothnia,
an arm of the Baltic Sea
... guests come to spend a night at sub-zero temperatures (I know you Americans won’t want to join in!) ... but this year there’s a Northern Line tube room ... when they’ve had their fill of a frozen Tube, they can move across, gratefully, into warmer rooms ...


... so the Ghosts of Escalators, Icy Tube Trains, the grey ghostly scenery around the coast line here – no sunshine as I write my ghostly post, sitting in my ghostly dust-sheeted  flat ... thinking about my even greyer birthday tomorrow ... oh the joys of aging!


Julie's cover art
However a few pinks ... the Ghosts of Aquinnah, Julie Flanders’ book, has an eerie salmon pink glow on her cover ... of what I’m sure is a very good read ...


... while my strange brain sent me off to a white goods store to check out a washing machine’s pink innards ... so I did get my innards photo for you ... pink is better than grey ... much more cheerful and in tune with positive letters and writings ...

Ghostly pink lit innards of a washing machine


Happy Birthday to me though– it is going to be a very dull day for me in the aftermath of the builders’ dust ... everything on hold ‘til I’m back to a degree of normality, later this week I hope!  I am going to a talk on a couple of local villages that I’m looking forward to ... a Monday schedule.



God-daughters and I are having a weekend in London at the end of the month when we can and will be belatedly celebrating our birthdays in plural – theirs are on the same day in October ...


I shall be back to normal blogging shortly ... in the meantime ... have wonderful 2014s ...


Hilary Melton-Butcher
Positive Letters Inspirational Stories

Tuesday, 31 December 2013

Prayer and Leaders ... Hippocratic Oath ... Cockayne Syndrome ... Mandela’s song ...


On reading through all of Mark Koopman’s 76 blogging friends who contributed a post to his 50 States Of Pray blogfest ... and going through your comments on my posting ... I thought as 2013 turns into 2014 another similar posting would not go astray ...

 
Header photo from Soweto Gospel Choir's home page

... and so I hail the New Year in with a concoction of thoughts, quotes, and odd references that recently touched me ... and leave you with a wonderful rendition by the South African township of Soweto’s Gospel Choir ... it will entrance you.


A few of you mentioned from my prayer that our butterfly effect will spread widely ... as others and leaders are doing right now and continue to do ... I mentioned Ghandi, Mother Teresa and Mandela ...
 
Butterflies across borders - the
Butterfly Effect
c/o www.o-pie.deviantart.com

... then spotted two from our generational era ... Angelina Jolie: humanitarian, role model ...  “The Angelina Effect” became a recognised, measurable phenomenon ... which related to her work as a campaigner against sexual violence in war zones ...


... she addressed G8 foreign ministers and the UN Security Council ... both bodies responded with funding and a legally binding resolution.


As a special envoy for the UN Refugee Agency, she also travelled to the Jordan-Syria border and demanded more international aid for the people fleeing Syria’s horrific civil war. 

 
Condoleeza Rice and Angelina Jolie
at the World Refugee Day in 2005
I expect many of you are aware of her preventative double mastectomy after genetic testing revealed she faced an 87% chance of developing breast cancer ... she chose to share her story ... probably saving many women’s lives ... by opening up the lines of information ...


Then there is the Malala EffectMalala the young school girl cold-bloodedly shot in the head by the Taleban in Pakistan’s Swet Valley, near the Afghanistan border in October 2012 ... who had defied the Taleban’s edict that girls should not be educated.


Malala was brought to Birmingham, to be operated on and looked after ... she was discharged early in 2013.


She has to be the youngest and most influential teenager on the planet as a champion of educational rights for girls ...
 
Malala at Strasbourg to collect
the Sakharov Prize forFreedom of Thought
... and on her 16th birthday, 12 July 2013, she addressed the UN Youth Assembly in New York ... concluding with these words:


The terrorists thought they would change my aims and stop my ambitions”, she said.  “But nothing changed in my life except this: weakness, fear and hopelessness died.  Strength, power and courage were born.”


I think the butterfly effect is with us ... with us, and with leaders, who will in their own way rise to ascend above the hatred ... exposing the atrocities and unfairness in the world ... encouraging more of us to be further aware of how fragile life is and do something about it ...


Malala greets her audience with ‘Namaste’ (a reverential salutation ... widely used throughout Asia and beyond) and concludes her meetings with this generous gesture.
 
Mural of Peace by Gari Melchers, an American
artist, in 1896

While a number of you commented on ‘Ahimsa’ – mentioned by Theresa Milstein – its precept of ‘cause no injury’ includes one’s deeds, words, and thoughts ...


Then Jo, of Jo on Food, My Travels and a Scent of Chocolate, commented that ‘Ahimsa’ made her think of the medical oath “first do no harm” ...  which sent me off to Wikipedia and the Hippocratic Oath ...


... where the ‘definitive’ Wiki photo is of a 12th century Byzantine manuscript of the Oath, set out in the form of a cross ...  

12th century Byzantine
Hippocratic Oath

... which made me think of Robyn Alana’s (Life by Chocolate blog) comment .. that I’d managed to include a passage in Hebrew (which she could read) and the Byrd’s song based on a passage from Ecclesiastes ...


... and now this 12th C Byzantine Oath, originally written in Ionic Greek in the late 5th century BC, which requires a new physician to swear upon the healing gods that he will uphold a number of professional ethical standards.


The oath has been modified multiple times ... one of the most significant revisions was first drafted in 1948 by the World Medical Association, called the Declaration of Geneva ... in the 1960s it was changed to:

“utmost respect for human life from its beginning

 ... making it a more secular concept ...

Humans are a global mix ... we really are much more alike with the same needs wherever we are in the world ... food, shelter, living without fear or worry, having love, compassion and caring people around us ...
 
Sandie posted this on her
blog: Chatty Crone
The Best Things in Life are Free

Friendship isn’t a big thing ... it is a million little things


An Arabic concept .... Patience, “the key to happiness”, is a virtue prized above others, and you will need to cultivate it in yourself if you’re to do business successfully.


Robyn Alana reminded us of the concept called “Tikkun Olam” ... meaning a healed world, which we pray for, but each of us is obligated to do our part to bring about peace of earth.


We are so lucky ... we should, as many of you ‘prayed for’ in Mark’s blog fest, give back, and pay it forward ... we have the internet – which has proved a boon to many ... friendships formed through blogging; information available to those searching for the name of an illness, as ...


Amy Garton Hughes, with her
mother, Jayne - from the BBC
Radio Today programme
... in an earlier blog post ..... I mentioned Scarlett (from Texas) and her son Knox, who has Cockayne Syndrome, whom I was able to meet in the autumn at the Amy’s Friends support group and annual ‘conference’  ...


... we have the radio, and on Boxing Day I heard a health item on Radio 4’s Todayprogramme on Amy highlighting how her mother through the internet found out about the cruel illness, Cockayne Syndrome ...


... then there is this beautiful spontaneous musical video tribute to Mandela in a grocery store ... three minutes of stunning voices ...

 
Taken from Woolworths home page
... just a wee bit of background information ... Woolworths (the general store) was American, came to Britain, Marks and Spencers opened their stores in Britain becoming clothing and food retailers, but in South Africa Marks and Spencers morphed into the name of Woolworths ... please do not ask – I have no idea!

But the video – will entrance you ...     Big Think: A Beautiful Spontaneous Musical Tribute to Mandela in a Grocery Store ... video and post found here ...


My references to Angelina Jolie and Malala came from the Sunday Times magazine, the world in pictures articles ...


Happy New Year to one and all ... may we remember others, may we be happy and positive, and may we improve ourselves ... health, wealth and understanding ...


... to everyone in this blogosphere, to the butterflies who will touch many of our extended bloggers, their families and friends ...


A very happy 2014

... and especially to all of you who have taken the time during the year to read my eclectic mix of posts and ideas – this probably really does seal the 2013 knot of them!     
Thank you!

Hilary Melton-Butcher

Positive Letters Inspirational Stories