A non-binary explorer and a determined lady botanist make the long journey over the high Himalayan passes to Little Tibet, collecting flowers and exploring ruins on the way. Will Jones discover the root of the mysterious deaths of her parents? Will she confide in Edie and allow her to help in the quest? It’s a trip fraught with dangers for both of them, not least those of the heart.
Jones is determined to find out what caused the unexpected death of her
father whilst they were exploring ancient ruins in the Himalayas. She’s never
been interested in the idea of the marriage bed, but along with a stack of
books and coded journals he’s left her with the promise she’ll travel back to
England for the first time since childhood and try being the lady she’s never
Edie and her brother are leaving soon on a journey to the Himalayas to
document and collect plants for the new Kew Gardens when she befriends Miss
Jones in London. She’s never left England before and is delighted to learn that
the lady will be returning to the mountains she calls home at the same time
they are planning their travels. When they meet again in Srinagar, Edie is
surprised to find that here the Miss Jones of the London salons is ‘just Jones’
the explorer, clad in breeches and boots and unconcerned with the proprieties
Edie has been brought up to respect.
A non-binary explorer and a determined botanist make the long journey over the high mountain passes to Little Tibet, collecting flowers and exploring ruins on the way. Will Jones discover the root of the mysterious deaths of her parents? Will she confide in Edie and allow her to help in the quest? It’s a trip fraught with perils for both of them, not least those of the heart.
Firstly apologies for the lateness of this post. However, I’ve been collecting blog material! We’ve been on holiday near Bath and we went to the Fashion Museum earlier in the week. I was primarily focused on looking at clothing from the 1770s and 1780s for Edie and for Jones.
The trouble with collections of historical clothing is that you only get the really expensive things or the things their owners didn’t like much that survive. And you don’t get a great deal of working people’s clothing, because they literally wore it until it had holes and then it got cut down and repurposed. Clothing was so much more expensive and energy-intensive than it is today. Everything was woven and sewn by hand.
These gowns and petticoats from the 1770s and 1780s are much more Edie’s sort of thing than Jones’, although I do imagine Jones stuffed in to the one with the blue quilted petticoats when she was visiting her aunt in England. And perhaps the one with the yellow gown and stomacher for more formal occasions. I can definitely see Edie in the pale pink effort with all the embroidery on the front when she first meets Jones at the ball. (High waists a la Jane Austen only came in around about 1794 as far as I can make out).
Once the pair of them are travelling, they revert to much simpler clothes. I imagine Jones wearing something like this… it’s based on a working man’s coat from about 1780, made of wool.
I am still in debate with myself over whether Jones would wear local clothing once she gets home to the mountains. I think she might need to stay in western garb because I am not confident enough to write about regional clothing without getting it wrong and that seems disrespectful.
Edie doesn’t feel right going for breeches, however comfortable they might be. So she compromises by wearing ‘stays’ or ‘bodies’ (which is what she calls them) that lower class women, who had no help getting dressed, wore. They lace up the front rather than the back, so you can do them yourself. This is really interesting little video of a working woman getting dressed.
If you follow me on twitter and to a lesser extent here, you’ll know that Littlest has very complex needs and is classed as ‘life limited’. Well. Something has happened and I’m not sure how I feel about it, so where better to process my feelings than here, publicly?
Littlest is ten. She was born with pneumonia and spent some time in an incubator. She was very ill and on CPAP when she was eight weeks old and had swine flu the summer after she was born. She never met her milestones- rolling over, walking, talking. And as she got a bit bigger, everyone started to believe us when we said there was something not quite right about the way she was growing. Eventually we got referred to the bigger area hospital and then they referred us to Great Ormond Street. Lots of tests got done for rarer and rarer conditions and all drew a blank. GOS thought she was interesting and did a muscle biopsy and it turns out that the nucleus of her muscle cells are in the middle rather than on the edge as they should be, so her muscles don’t sproing properly and she’s underpowered. This presents similarly to Muscular Dystrophy, but it’s because she’s outgrowing her strength as she gets bigger.
So, she no longer walks at all, except in a walker. She is classed as having an unsafe swallow and is fed by tube. She can’t turn herself properly in bed. She can’t vocalize words, although she can make sounds. She communicates with sign, but that is getting harder for her as she is losing her fine motor control. She has a learning delay and is probably around about four intellectually. She can’t read but she recognizes some letters. She can count a bit. She understands pretty much everything you say to her and really wants to learn. She has a wicked sense of humor. She likes Peppa Pig and books and her iPad and any animals she comes in to contact with love her reciprocally.
We had no diagnosis. And therefore we had no prognosis. We were referred to the Children’s Hospice seven years ago. The criteria for a referral is that they think that the child has a fifty percent chance of surviving til they are nineteen.
This took some coming to terms with.
The thing I have found absolutely hardest to process, though, is the lack of certainty about it all. Four years ago I started having these stupid stress-related seizures, which were eventually diagnosed as ‘Functional Neurological Disorder’ or a learned reaction to stress. Mindfulness, relaxation and avoiding stress is the only way to manage it. It’s taken me years, but in the last twelve months or so, I’ve finally begun to live in the moment, appreciate what we have and just seize the day. Enjoy what we can. Live our life in the cracks of appointments with Littlest’s fifty-ish different professionals. Spend time with Talking Child. Fit friendships and self-care and tending to my relationship with Mr AL around the chaos.
And then. Yesterday. We had a letter from the 100,000 Genomes Project. We had had swabs and bloods taken years ago. I’d put it out of my mind as something that was yet another test that would be futile. A hoop for us to jump through that wouldn’t give us any answers but which might help future children and parents.
Littlest has a small alteration to the gene CTBP1.
We have an appointment on Tuesday at the area hospital to go and discuss it. Obviously in the meantime I have played Internet Misery Bingo (TM) and found a load of articles I don’t have the education to understand and also, a support group set up by a genetics study in the US, which has ONE (1) other parent on it, from the Netherlands, with a slightly older child who has hauntingly similar symptoms.
Mr AL and I are both a bit weepy and shocky. After so long and so much adrenaline, I have no other emotions left. How am I supposed to feel about this? Materially, it changes nothing. The sample size of children with the alteration is vanishingly small, so we are no closer to a prognosis than we were before.
All information is good, but I simply don’t know what to do with. A very long time ago I blogged every day about life, feelings, the usual introspective noughties stuff and it seems like that’s where I turn again when I need to process.
I missed last week’s post because life got in the way, I’m sorry. Littlest has been in plaster casts on her lower legs and feet for a fortnight after a botox injection in to her ankles. This is to help prevent her feet from curling under any more than they are and hopefully enable her to do standing transfers for a little longer, rather than needing hoisting all the time. The casts have meant the moving and handling we do on a daily basis has been much more difficult because you can’t get them wet. They are very hot pink though, which has caused some glee.
In addition we have had to update something called the ‘Advanced Care Plan’ which is basically setting out our wishes should she become very ill. It’s good to have in place, but flipping heck it’s grim to fill in. And Talking Child has had all sorts of traumatic appointments as well. We’ve collectively been sat on the sofa in a heap with our respective pants* on our heads. No writing was done and we all felt awful.
Since Friday, I’ve been clawing myself back up the slope and have written a handful of words – a few hundred – every day. Plus we managed to fit in a family trip to Longleat, where we fed giraffes, held snakes, watched giant otters sleeping and generally had a brilliant time. We have more trips planned over the summer holiday, starting with a weekend at the Children’s Hospice this coming Friday. I can’t wait.
Finally, I’m signed up to the SFF Book Bonanza giveaway this week – there are more than a hundred free SFF books and stories available for download for your reading pleasure should you so desire.
Next week: An excerpt from my work in progress, The Flowers of Time, which is cracking along slowing but steadily now, thank goodness.
I’ve read lots and lots of lovely books this month, including:
Detour by Reesa Herberth and Michelle Moore
I go through phases where I don’t read contemporary romance at all; and when I do. they have to have *something* there to hold my interest. This did, all the way through. Two people with pretty severe issues, working them out with each other whilst driving across the US. Sweet, thoughtful, tender. It was lovely.
The Consuming Fire by John Scalzi
Second in the Interdependency series. Really interesting universe, fantastic plot, as always amazing characterisation. I particularly like the sweary bi morally-grey, unashamedly sexy Kiva Lagos.
5th Gender by G. L. Carriger
Really sweet gay tentacle-haired purple skinned chap in exile from his home planet falls for human detective on a space station. They solve a murder on a space ship. Lovely romance, but the draw is the world-building. Brilliant.
Secret Warriors by Taylor Downing
I read this as research for my post-WW1 work, looking for references to Trench Code. It didn’t have much in it about that, but it’s an absolutely fascinating look at the behind-the-scenes skullduggery of the First World War. I found the bits about propaganda most interesting.
Catalysts by Kris Ripper
I’m re-reading this whole series – it’s so GOOD. Poly, kinky, queer. Angst. Tenderness. People being people. I love it.
The Seventh of December by Garrick Jones
An astonishingly detailed and historically accurate love story between two men in WW2.
SOE, MI6, the Blitz, parachuting in to France, unarmed combat, virtuoso violin playing, blackmail involving Princes of the Realm, sexy Yanks and chaps dancing together in evening dress.
I understand it’s the first in a series and I am now biting my nails waiting for more.