Fashion Museum, Bath

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.

The little things… how you deal with menstruation, what pins you use in your hair, how often you change your stockings… those are all things that tend not to get referenced in contemporary texts because it was all such normal stuff that you didn’t need to. Everyone knew about it. There’s a good blog post about Georgian personal hygiene by the Word Wenches and I think I may have mentioned Madame Isis’ blog before.

Next week I am back to regular scheduling and I am interviewing Naomi Aoki!


PS: As we came out of the museum and went to find the old fashioned sweetshop, we fell over a coach and four. Netflix are filming the Bridgerton series of books by Julia Quinn.

coming to terms with CTBP1

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.

CTBP1 Gene

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.

Thanks for listening, if you’ve got this far.

life chaos abounds

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.

*British pants, for maximum comedy value

travelling writer

We are hanging out at the Children’s Hospice this week. As you do. We are able to come every ten-ish weeks, usually for three or four nights at a time. We have been looking forward to this week, because we’re both shattered.

I was hoping to capture a lot of words whilst we were here, but so far I have only got about two thousand down on paper. I am within about ten thousand of finishing the first draft of the sequel to Lost In Time and I am desperate to get it done with. I know exactly what is going to happen, but finding the time to get that down on paper seems to be almost impossible at the moment.

In the meantime, Mr AL and I have made a commitment to be less hard on ourselves and try to spend a bit more time together. With that in mind, we have accepted an offer from the hospice to have our younger child for nearly a week in mid-July and we are looking to book a trip somewhere with our older child, just the three of us, with no wheelchair ramps necessary.

You have no idea how peculiar this makes me feel. On the one hand I am incredibly excited to be going away for a few nights. To Paris. PARIS! On the other hand I am wracked with guilt about leaving Child Two at the hospice.

She loves it here. There is the jacuzzi, messy play, the Narnia garden, the music room, lots of television and iPad opportunities, soft play and all the lovely people to talk to and play with. But leaving her still makes me feel like hell.

There have been two other families here this week with us and we have been chatting. I don’t think this is an unusual thing for ‘families like ours’ to feel. I put that in quotes because that is how a lot of the professionals who surround us describe us. Not here at the hospice, though; here, we are talked of as ‘our families’, which is lovely.

Anyway. The top and the bottom of it is that instead of writing this afternoon, I have been on the phone to Railbookers and I have a quote. And Mr AL is currently organising an appointment with the passport office; everyone else’s has run out and mine makes me look like Myra Hindley.

It’s very easy to bang out four hundred words of rambling like this. But poor Alec and Lew are stuck in Max’s office having an emotional altercation and I’m probably not going to be able to get them out of there before the dinner bell goes.

For today, that is all.

#WritersLife

I had a bit of a panic attack this morning when I realised I hadn’t updated my blog for ages. And then another bout of anxiety over what to write. What should a Writers Life blog actually cover?

Alex Beecroft pondered that perhaps I could write about managing stress as a writer? But I’m so, so, sooooo bad at doing that, that I think it would be a lesson in how not to do it, rather than at all helpful.

Instead, I think I am going to chatter about my life generally. That’s complicated in itself because my kids are nine and ten now; and I don’t want to expose their lives too much on Teh Interwebs… but on the other hand a lot of my comedy chaos comes from having high-need children and a stressful family. So it’s going to be a bit of a two-steps forward, one step back effort as I feel my way.

I blogged for about a decade about smallholding and family things, years and years ago now at the dawn of time, and I enjoyed it. So perhaps using this space for something similar rather than just rather pushy posts about my writing will be good for me.

At the moment I’m sat in the garden for a rare couple of hours with no-one else about. It’s sunny and I’m watching the rabbits make friends (VERY GOOD FRIENDS) and listening to the hens grumble that it’s nearly feeding time and the dog whinging that he wants to go and murder the pheasant that’s cracking in the field over the hedge. It’s all very bucolic and English Country Garden-ish and really I should have a cup of tea beside me.

Watch this space. It’s a blank page, about to be filled.