Monday Magic – Inspiring Blogs for You!

I can never believe how quickly Monday Magic comes around, but what I do know is that week after week I find just how many fantastic blogs and bloggers there are in the blogosphere!

Monday Magic 25th Feb

The stand out story for me this week was that of Tony Foulds, the Sheffield pensioner who has cared for the memorial to 10 US airman who, as a child, he saw crash in his local park.  The crew of the Mi Amigo attempted to land their damaged aircraft in the Sheffield park where Tony and his friends were playing, but when the airman waved to the children to move, the youngsters merely waved back.  It remains the biggest regret of Tony’s life that as an 8 year old he thought the pilot was waving to him, not at him to move, and thus flew the craft into woods where the plane crashed.  When a BBC journalist heard that Tony’s greatest wish was to have a flag pole and a fly past on the 75th anniversary of the crash, he set about making it happen.  Relatives of the Mi Amigo crew joined thousands of local people as Tony watched the US and British airforces fly overhead – one plane for each airman.  Every time I have watched, Tony Foulds has reduced me to tears with his passion and his firm belief in caring for the memorial of the strangers he calls family. (See the full story here: https://www.facebook.com/bbcbreakfast/videos/642676716166370/)

In our household hubby went to Cambridge with my brother who had treated him for his birthday to a Prog Rock weekend….not my cup of tea, but they had a good time listening to loud music (Steve Rothery of Marillion fame) and visiting RAF Duxford.

 

So that left me in the capable hands of my lovely girl – yes, a girls’ weekend! I would love to be able to report a time of shopping and clubbing – once upon a time definitely! – but it was more like artwork (hers not mine) and a film.  The weather has been beautiful for February, so we managed to get ourselves to my parents’ house under our own steam.  Now I know that friends who know us in person are laughing now and yes, it is the same road…..but yours truly had the very tricky job of steering the new motorised chariot out of the patio doors, down the ramp, along the side entrance and out into the street.  Then the local council have seen fit to install temporary traffic lights at the roundabout that separates our end of the road from theirs, so I had an unexpected negotiation and a girl getting very worried her mum was going the wrong way in the road!  Fear not – my driving skills are improving and I was able to report to hubby that we had made it in one piece and then I used the headlight he had fitted to guide us home in the dark.  Well, ok it is a bike light and the street lights were on, but it still means that I can be seen coming!!  But to be serious, I really enjoyed the feeling of independence which I hadn’t quite expected!

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I mentioned above that I have found some fab blog posts for you and some of these are from a lovely facebook group that I belong to – Sharing, Inspiring, Promoting Bloggers.  The first on the list is giving a shout out to Rare Disease Day, later this week on 28th Feb – please have a look at the bloggers who have shared their stories in part one of Despite Pain’s series.  Yours truly will be featured in the next episode talking about cauda equina syndrome – I will share this with you later this week.  Meanwhile sit back, grab a cuppa and enjoy!

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View story at Medium.com

https://despitepain.com/2019/02/18/why-we-need-to-support-rare-disease-day/

https://wheelescapades.com/2019/02/21/12-frustrations-of-being-a-wheelchair-user/

https://ginlemonade.com/2019/02/13/house-hunting-as-a-wheelchair-user-other-stories/

https://yesterdayafter.com/2019/02/19/art-for-music-series-aurora-portrait-new-release/

https://jumpstartpositivity.com/simple-things/

https://youcanalwaysstartnow.wordpress.com/2019/02/18/dont-be-rigid-and-brittle/

https://collinscrohns.wordpress.com/2019/01/04/top-chronic-illness-books-and-blogs-of-2018/

http://angelanoelauthor.com/guest-post/published-elsewhere/out-of-my-comfort-zone-why-i-wrote-an-essay-that-scares-me-a-little/

https://anhistorianabouttown.com/six-the-musical-review/

https://myblurredworld.com/2019/02/24/online-world-accessibility/

Please like, comment and share!

Have a great week,

Claire x

 

 

A Rare Chronic Illness, A Book Review and a Love Letter – “Leo and the Lightning Dragons” #LoveBooksGroupTours

This is a special post today and it feels fitting that it falls on Valentine’s Day.  It combines a very rare chronic illness alongside a review for a book that I hope you will agree is a labour of love.

Have you heard of Ohtahara Syndrome? No, me neither.  It is a very rare form of epilepsy and seizures  usually start before the age of 3 months, often in the first days after birth.  In fact after birth and the first signs of seizures, some mothers realise that their baby has been having seizures whilst still in the uterus.  This form of epilepsy does not respond well to traditionally used seizure medications and treatment is very difficult.  Many babies will be floppy, have difficulty feeding and suffer repeated daily seizures.  The prognosis is poor. (Epilepsy.org.uk)

Leo White is a little boy who has Ohtahara syndrome and suffers many seizures daily that are as yet uncontrolled. When I was asked to review this book that his mother has written for him, I was delighted to be able to.

Many thanks to Leo and his family, the publishers and Love Books Group Tours for giving me the opportunity to read and review such a special book.

Pin for later

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Leo and the Lightning Dragons

Leo is a knight, probably the bravest knight, and he fights dragons.  But the dragons that Leo fights are not normal everyday dragons, they are huge, lightning dragons inside his head.  Everyone around Leo tries to help, but they can’t tell when the dragons might strike or for how long.  The people of the kingdom and Leo’s parents all think this is so unfair and they try all sorts of special actions to help destroy the dragons, but Leo doesn’t seem to be strong enough to shake them off.  But one day Leo becomes very angry and decides to fight as hard as he can, making him the bravest knight in the land.

This is a wonderful children’s book written with love and personal experience, and is beautifully illustrated by Gilli B.  I am an adult who is able to understand the analogies cleverly used by Leo’s mother to describe the seizures that her little boy fights on a daily basis.  The lightning dragons inside his head depict so well epileptic seizures, and I can feel the frustration that the potions from witches, the music from minstrels and the special food from the wizard can do nothing to help – so often medics are unable to find suitable treatments for chronic illnesses whether this be medication, complimentary therapies or special diets.

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But what of the child reading this book?  It is perfect to become a favourite bedtime story for the early years, with its pictures of knights, dragons, witches, wizards, kings and queens.

But it is also perfect for an adult to introduce to a healthy child the idea that some people have different battles and these are against things inside their own bodies.  This need not be done in a scary way and indeed it isn’t in the book, as Leo the knight shows just how someone can battle with their own demons….or dragons in this case.

Leo’s mum also suggests ways at the end of the book to make this a “sensory” story and really bring to life the battles – wonderful and inclusive for all young children, including those with additional needs.  What child wouldn’t love using foil to make crackling, lightning sounds, slime to be witches potion or blowing bubbles from the cauldron? And we are told not to forget the cuddles!  Find more ideas on the website.

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Photo by Snapwire on Pexels.com

The royalties for the book are being donated to the Childrens Hospices Across Scotland, who continue to support Leo and his family and many others like them.

Leo’s mum says “Every day, my husband and I are amazed by Leo’s sheer determination and refusal to give up and we could not be more proud of our boy, the bravest knight we’ve ever seen.”

This is a lovely book that brought tears to my eyes, but will bring hours of fun to so many children.  On Valentine’s Day what could be better than this beautiful love letter from parents to their brave little boy – a true knight!

5 Stars for both the story and the illustrations

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Photo by rawpixel.com on Pexels.com

Buy here:

Amazon:

Waterstones

Find on Twitter:

@FledglingPress

@leolightdragons 

Website: http://www.leoandthelightningdragons.com/

About the Book and Author

Leo and Mum

“Gill wrote the story before Leo’s first birthday. It was a difficult time and Leo was having huge numbers of seizures every day. Feeling that Leo deserved a happier story, one in which his strength and bravery was rewarded, Gill wrote one for him.

She approached Gilli B, a Fife based artist, after seeing her artwork online and loving her whimsical and quirky style. Although she was only originally commissioned to do a few illustrations, she actually loved the story so much she asked to illustrate the whole thing and Leo got his own ’book’ for his birthday!

The following year, Gill had packed his book for a visit to the CHAS Hospice Rachel House and came back one day to find that the nursing staff had read it and written the most amazing comments inside.

Bolstered by their enthusiasm, Gill approached Edinburgh author Peter Burnett for some advice on how to get the book published. He took the book to Clare Cain at Fledgling Press, who fortunately loved the book. Fledgling Press do not normally publish children’s books but made an exception in this case, to help raise awareness of Ohtahara Syndrome and CHAS – Children’s Hospices Across Scotland.”

Taken from the website

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Round and Round – My Zebra Journey #SoCS

Round and Round - Pin

Round and round, up and down.  I seem to be moving along in my life but never getting anywhere!  When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination.  Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.

But my journey continues round and round, up and down as the ride continues relentlessly day in and day out.  When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination.  Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size.  He has a mane, a tail, hooves and he can gallop at great speed.  To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.

My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to.  I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.

This is part of Linda G Hill’s Stream of Consciousness – pop over to her site, read the rules, take the prompt “Round” and start writing….then link up!

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Why the Zebra?

The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare.  Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!

EDS-random-fact-21-The-zebra-is-our-mascot-There-s