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 cr̬me fraiche, served with Balik smoked salmon and some selected caviar), mother had Shrimp Cocktail Рconsisting 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