The wheel turns- the sounds of autumn

It’s all gone a bit mists and mellow fruitfulness here at Lester Towers over the last week or so.

Autumn cyclamen

The garden is having a last frantic burst of activity before everything starts to shut down for winter…there are two roses on the white rose bush outside the bedroom window that I have watched come into full bloom over the last few days; and the autumn cyclamen in the scrubby area where we took down the tree are blooming like mad. Every time we go out, Littlest and I collect leaves and ash-helicopters to add to our basket of Things To Sort–swan feathers and shells and interesting stones.

The most noticeable thing about the change of season though, is the way the soundscape has changed. I’m not sure whether it’s just because it’s getting dark earlier and I’m still awake when they wake up…but the Tawny Owls are busy in the hedgerow.

There’s a family of them and they work their way down the field border every evening having long conversations to-and-fro, getting closer and close, then fading away. And the little birds are back on the feeders in a steady sort of way–early in the year when they had babies to feed, the mealworm feeder needed refilling every couple of days. Then in the high and late summer they didn’t much fuss with it at all; and now I’m refilling it once a week or so. We still have goldfinches and siskins on the seeds as well as our usual varieties of tits and the robins. They’re quieter than they were in the spring and summer, more chatter than song.

The sound that really heralds autumn though, is the bellowing of the red deer.

There are a lot of them wild on the Quantocks and they come right down to the village edge here, and sleep against the edge of the woods in the parkland around the manor house. When we lived in the old gardener’s cottage up there they were literally in our back garden. It’s a haunting noise, very eerie when you hear it drifting across the hill as the dusk comes down. I associate it with being curled up on the sofa with a book, curtains pulled shut and the fire lit.

The time of year always makes me feel as if I need to lay in stocks for the winter. It’s a primal sort of response, I think, gathering in the last of the harvest to see us through the cold. These days I mostly confine myself to making gin or vodka or brandy with hedgerow fruit and Mr AL and Talking Child are collecting the windfalls apples and we’re eating a lot of crumble. In more enthusiastic times I’d be processing everything I could and freezing or drying it; and we used to make elderberry and rosehip syrup and all sorts of wine and chutney and jam. I’ve got spinach I need to plant out in the greenhouse and the perennial kale in the garden; but other than that, my gardening is sadly lacking these last few years.

Life turns as the wheel of the seasons does I suppose, and I’m doing other things now. I regret it…but I can’t worry about it. I just tell myself that the wheel will come round again and to enjoy what we have.

Publishing Delays

wood desk laptop office
Photo by Pavel Danilyuk on Pexels.com

As those of you who follow my newsletter know, the last couple of weeks have been a real nightmare here at Lester Towers.

Littlest had an accident at school and broke her nose, which has caused all the fuss you’d expect, plus worry that she’d have to have it re-broken and re-set to ensure it’s still possible to naso-gastric tube her in the future if necessary. This has, thankfully, turned out not to be the case, but it’s taken ages for ENT to decide. I’ve had a visit to hospital for a minor procedure which was more tedious than worrying, Talking Child has been stressed about school and her sister and me. And finally Mr AL has put his back out lifting Littlest, which has caused our whole family raft to list alarmingly to one side.

So, we’re struggling, basically. Writing itself and my somewhat intermittent early morning writing sprints with my Office Colleagues, Ofelia Grand, Nell Iris and J. M. Snyder have been what’s keeping me going.

The cherry on the top of the disaster-Bakewell tart however, has been that my dear friend and editor has been hospitalised with covid. She is home and recovering now, which is an enormous relief, but as everyone knows, it’s a long haul.

The result of all this non-writing stress is that we are pushing the release of The Fog of War back until 16th August. I’m very sorry about it, but there it is, people are more important than stories when it comes down to it. The Starling story (which still doesn’t have a name, this is clearly my brand) is puttering along but again it’s all a bit up in the air.

School breaks up for summer in the last week of July, so I have no idea what my writing schedule will be over the weeks after that–last year I did quite well getting up before everyone else and getting on with it. The plan is to release the Sylvia trilogy three months apart, and I’m still hoping that will work, although I’m starting to wonder whether I’ve over-faced myself. Time will tell!

Anyway, that’s it. We’re all okay, but it’s been a tough few weeks. I hope you’re all doing all right too in these uncertain times.

Personal post: it’s a lot, folks

I’m genuinely struggling to know what to post about this week. I’ve got all sorts of things going on–Littlest had another COVID scare in the week and had to go in to the Children’s Ward to be tested and my Mama had her radiotherapy orientation yesterday and has her fortnight’s treatments scheduled to start in a week’s time and both kids have needed bloods taken and we’ve all had flu-jabs.

open book on table
Photo by Polina Zimmerman on Pexels.com

Then…Morris got out whilst Mr AL was taking Littlest in to the ward on Wednesday and when I went to collect him up, he wouldn’t be collected (because badger setts are more interesting than people, doh) and I ended up having a mahoosive seizure in the middle of a ploughed field a quarter mile away from home, in the dark, in the rain. Without my locator-watch gadget, which meant that poor Talking Child, the passing Lovely Jogger, my sister and my friend–both of whom I managed to call in a garbled fashion before I went full-on kipper–spent quite a while searching for me. I’d just got out of the bath and was in my nightie and house-trousers and unsuitable shoes, and I’d semi-fallen in to the ditch whilst trying to jump from one field to another.

Morris Dachshund of Lester Towers, Badger-Hunter Extraordinaire. Butter wouldn’t melt, obvs.

I felt pretty grim on Thursday–I get a sort of hang-over after the siezures–and that was made even worse by feeling so useless with everything else that is going on. Mr AL will be driving my Mama the ninety minutes up and down to the hospital, with my sister. It’s more comfortable and less tiring for Ma to travel in her powered wheelchair in our vehicle rather than transfer in and out of my sister’s and take a folding chair. I can’t participate in any of that, because I can’t drive any longer and no-one wants me to ride along only to have a fit in the middle of Mama’s appointment.

In addition, it’s not really safe for Littlest and I to be on our own without supervision. She’s a choking risk and I’m a fitting risk and if those two things happen simultaneously, well, that’s not ideal for her. This has been the case for quite a while and we work round it, making sure we always have oversight.

But after Wednesday, my nearest and dearest are having a conniption fit about me being alone at all.

Littlest, when she was in hospital for something-or-other earlier in the year. Honestly, we lose track.

I’m really, really pissed off about it. I relish my time alone and need it to recharge. Being stuck with a carer in the house is horrible, however much I like them personally. It’s not that I want to hoover naked or turn cartwheels in my underwear; but that possibility doesn’t exist at all if you have someone else in the house. And if they are pottering around unloading the dishwasher and changing the beds…both of which I am massively grateful that they help with…I feel guilt-wracked sitting on the sofa watching them and not helping.

In addition to all that, we have lost our usual support from the Children’s Hospice. Because of bloody COVID, they have had to change the way they look after their families. Usually we all go for three or four nights every three or four months, Littlest gets twenty-four hour care and we get looked after too. There are people to talk to and discuss different care approaches, there are comfy sofas and a nice garden and lovely food and we have a real rest. Now though, they are only open for end of life care for children (both COVID and other ‘normal’ conditions) and emergency stays for children when families are on their knees. Littlest went in the summer when we were doing really badly and she didn’t enjoy it as much as she usually does–it was all a bit different, the main parts of the house were shut off, she couldn’t interact with everyone like she usually does and of course all the carers were in scary PPE. They have us on the emergency list again, but it’s not the regular respite that we have been relying on.

Plus I’m bricking it because although we’re in a relatively low-incidence area COVID-wise, it’s on the rise everywhere and if we get locked down again we will have to cut back on some of the carers we have coming in to the house, just to keep everyone safe. That will mean we get progressively more exhausted–Littlest needs help in the nights. And there’s the risk to Littlest on top of her general respiratory fragility. And the risk to my Mama, with the lung cancer.

My mental health is for shite, basically, and not really because I’m becoming extra-depressed, but because there’s so much going on.

I’m trying to crack on with the rewrite of The Hunted and the Hind, but I’ve stalled a bit. All I want is to be in an alternate fantasy world, to be honest. Somewhere I have control over, unlike here. But I’m not sure that makes for good writing.

That’s it. That’s the blog post. Tomorrow is another day, we’ll laugh about this later etc..

It’s just a bit tiring, is all.

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.