Monday, 30 January 2017

legwarmer help, please, fibre-friends?

Knitting and crochet friends, if you have any spare time/wool, could I put a shout out for leg warmers for N, to go over her splints? 

Her feet and legs in the splints are going blue with cold, even with thick socks. Apparently it's just 'something that happens to 'children like her'". They are looking at getting a leg support thing on the front of the wheelchair to elevate them, but 'gentle warming methods' are also appropriate. I just don't have the get-up-and-go to do it myself at the moment.

If you need a pattern, there is this one at Ravelry for wrist-warmers that I've used in past - the large version works really well as child leg warmers and the floppy bit keeps her feet warm. I do have the pattern to email if you'd like it. However, there are also a load of other ones that are everything from beginners to expert, that are free. Her measurements are ten inches around the leg and knee to ankle she is another nine inches, ish. Colours: either green to go with her school uniform (in the pic) or anything else at all, to go with the 'child from the Steiner School' look that we usually go for :). 

As you can see from the picture, she is actually walking very well, thanks to the botox - twelve months ago now - and the the tendon lengthening operation in the summer. She is having loads of Hydro, Physio and Bowen therapies, which are really helping. She is extremely determined and we have both a new walker and a new wheelchair in the works that will make it easier for her to transfer in and out herself. 

We are plodding along, generally speaking. It's a tiring time of year, isn't it? But other than that, we seem to be on an even keel. No antibiotics or hospital stays so far this winter. No drama other than multiple feeding button failures. And we have a house-rabbit now.

For today, that is all.

Tuesday, 15 November 2016


I have taken the plunge this year and started NaNoWriMo. So far I've got about twenty-six thousand words and I have written something every day since the beginning of the month. On Saturday I came to a bit of a full stop because I kippered out so much and ended up sleeping for most of the day. So this week I need to get the word-count up keep up with myself.

Instead, I'm blogging. Because that's writing, right?

We found out on Friday that we are going to be able to stay in the house - the church (who are essentially our landlords) have bent over backwards to make that possible, and it such a huge relief. I am now busy planning what I can plant in the garden in a slightly more permanent fashion and planning to buy a new sofa bed for the chalet to make guests more comfortable and also, to turn it in to a writing space for both of us, because actually having a routine and a working day is the way forward.

In meantime, I have cut right down on my poultry stock. It was taking four person hours per day to look after them properly and it was just too much for us to deal with given the circumstances. We are all much happier. B because he isn't being asked to Undertake Poultry Tasks, me because I have stopped resenting having to ask other people to Undertake Poultry Tasks and the children because they have more of our time. I have kept the Barnevelders, to provide us with eggs and meat; and a few layers of coloured eggs for a pretty market stall. B is still doing the market on a Friday and I a still teaching courses at the weekends sometimes, with the 'not being able to do it if I'm going to have a fit' parameters. We have had to cancel a few over the summer due to bad pacing on my part; but towards the end we have got the hang of it and my baby sitters have been able to hover in the background.

I hate having babysitters. I loathe it. I feel angry and frustrated and disempowered, ALL THE BLOODY TIME and it's turning me in to a harpy. We have found a really lovely person to help with the house and she is coming on a Tuesday morning. B has puppy-walked me out to Sainsbury's this morning and we are tucked in a corner of the cafe, drinking chocolately beverages and writing. I'm procrastinating, of course, rambling in fact. So I'm going to bugger off and write three thousand words set in London in the early 1920's. Watch me go. Yay.

For today, that is all.

Tuesday, 18 October 2016

Basic soap

I'm getting a grip on the day and making some soap. Just thought I'd mention it and be all positive and creative and stuff. Same old recipe - but haven't done it for ages:

16 oz. lard (or Pura) (454g) 
2.15 oz. caustic soda (60g) 
7 fl.oz. COLD water 

- Put the lard to melt in a glass bowl (I used to stick it on top of the rayburn when I had one) 
- Add the caustic soda to the cold water (GENTLY! And never the other way round) 
- Once the water is clear again, add it slowly to the melted lard, mixing with a hand-blender with a towel over the top to stop it splashing 
- When it's going gloopy and you can see the path of the blender in it ('tracing'), pour it in to your mold 
- Keep it as warm as you can for a few hours to help the caustic soda/fat reaction continue 
- Leave for six weeks somewhere where air can circulate round it - eg in a tea towel in the airing cupboard 
- Slice and use 
- Or, grate, add a bit of water and some petals/essential oils and wodge in to the mold again to set for a few days before slicing

Wear eye protection, rubber gloves and an apron - be careful, caustic soda is grim stuff. This makes a very nice soft, basic soap.

Friday, 30 September 2016

work-life balance

We're at the hospice this week and it's been great. We both really needed the break. We've had some Big Talks whilst we've been here though, and worked out that we are Doing Too Much. So I've put a load of my breeding sets of hens up for sale and I'm going to stop rearing on youngsters. This should free up about two hours a day to spend with the children, or sleep, even; whilst still meaning we are working enough to bring in a bit of income and tick the box for Working Tax Credits.

I hate that we have to plan everything out like this, a time versus money budget that is so finely balanced. I hate that I am having to give up a bit of my life that I enjoy and seriously identify with in order to use my energy more wisely. I am much more healthy than I was - I get about four or five hours in the morning when I can actually achieve things now; but it is insane to use that mucking out hens when I could be using it for family stuff.

I think that all families have this issue - how many hours do you go back to work when you have small children? But for families with a disabled child it is so much more difficult. There is so much more to do for the children, so many more appointments, so much more personal care, so much more laundry, so many more times you need to change their sheets, hoisting them in and out of the bath and bed and on to the sofa takes an age.

Work as a way to identify as a grown up adult with more going on than just wiping bottoms is so important for parents. But as the parents of disabled children, our options are so much more limited.

Oddly, I thought I would resent this when it happened - it's been on the cards for a while. But whilst I feel sad, I mostly just feel and enormous sense of relief. Having time at the hospice is great because I get to do 'normal mum things' with the children - art, a walk in the garden, a bit of Minecraft (of course!), some music, just hanging out watching Peppa Flipping Pig. I get to do stuff with B as well - we went to Sainsbury's together and bought N's birthday presents and had a cup of coffee. At home, we are too snowed with caring and with juggling work to be able to take the time to do Non-Survival things. By ditching two hours work a day I am ditching part of my identity, but I am okay with that, because the return will be immense. We will be less rushed, less stressed, less crushed in to the corners.

And that's good.

Friday, 22 July 2016

give me a ring

Ring Theory
Ring Theory
This article (click on the image, it's not long) came up in my facebook feed this morning and I found myself ranting on a friend's timeline. It's about how to treat people in crisis. You can only freak out to people in rings further out from you, basically. It's a good article. 

I *deeply* resent the amount of time I waste making other people comfortable with Nenna's condition and to a lesser extent, the stress related siezures I have started having. People ask what's wrong with Nenna - tactfully, usually, things like 'What exactly is her condition?' or less often 'What's wrong with her, exactly?' And then when I tell them that she has an un-diagnosed but still life-limiting progressive neuromuscular condition, they freak out and stay the first thing that pops up from their hind brain like 'Oh, but she's clearly still really happy' or 'I wouldn't cope in your situation'. Both of which are bloody stupid things to come out with, really. I end up agreeing with the first one - 'Yes, she's so cheerful all the time, such a trooper' and saying 'I'm sure you'd be fine' to the second. And I've lost count of the number of people who are freaked out by her button/tube for feeding, or the fact that she dribbles a bit now when she's tired, or that she squeaks unrecognisable sounds as she's signing that some people find embarrassing. 

It's exhausting managing everyone else's emotions when I have so fucking many of them myself and no readily available outlet because B and I HAVE to keep it together, otherwise the wheels fall off the wagon.

I am also deeply pissed off at the 'friends' who have dumped us as a family, apparently since I've started having the siezures. Nicer friends have come along to replace them. But really? 

I was speaking to a recently bereaved friend yesterday, who said that she is in the same position - for example, her neighbour finds the contents of her handbag fascinating whenever their paths cross rather than saying anything. I completely get that people don't know what to say or don't know how to respond when you mention things that are to you, completely normal - nappy changes, feeding, dodgy nights lying awake listening to the rhythm of her breathing and wondering whether you need to call an ambulance. Sobbing in the small hours because you just don't know how you're going to get up to face the day. Joking about having a siezure in Paediatrics for a couple of hours because everyone got overexcited and wouldn't let you lie quietly and get over it, but shipped you off to A&E on a gurney.

What can we do except normalise these things? Or deflect using black humour?

It's not our job to make other people feel better about things, though. It's their job to make US feel better. Or at least, no worse. Otherwise they can bog off. I am thinking about certain close family members here - one in particular stood by Nenna's incubator wringing their hands and declaiming 'Oooooh, the poor little mite', which was a genuine and unexpected return to Dickensian grandparenting that came way out of left field. 

So, what CAN you say, and/or do? As the linked article says, comfort and support " ... say, “I’m sorry” or “This must really be hard for you” or “Can I bring you a pot roast?” ... ". 

Don't bang on about how awful the situation is and how you are sure they are having a dreadful time and you certainly wouldn't be able to cope. Don't repeatedly express your horror at how ill someone looks. Don't talk about how bad you feel. 

Make space for them to talk to you if they want to and if they don't, help them talk about or do something normal. Offer to help tidy their tupperware cupboard or clean the carpet/change the sheets where the child has thrown up. Don't give them cake or booze. Cake and booze are lovely, don't get me wrong. But something they can chuck in the freezer and defrost as an actual meal is more help. 

Listen. Listen listen listen. Be mindful of their emotional and physical space. And then when you need to, turn to the next ring out, and dump your emotion and horror and sense of loss on them. 

This is how it works. We're all in interlocking circles all the time, at various different levels. Think about where you are in each one and act accordingly.

Monday, 6 June 2016

elderflowers and knickers

Several people have told me that I should write more, and try and go back to blogging. So here I am. The trouble is, I don't know what to write about, in a general sense.

My life isn't the comedy of Polish Lodgers and eccentric parents that is was ten years ago. I'm not really living the bucolic idyll we started out with when we moved to mid-Wales from Merseyside. There has been so much I couldn't or wasn't able to write about in the last few years - B's parents gave us so much grief about me even mentioning them that I started self-editing. B and I went through a very rocky patch that was too painful and personal to put out there for public consumption. The children are getting older and their personal privacy is something that needs to be taken in to consideration. I don't want to spend my writing time whining on about how tough N's got it, anyway; although it feels that I'm doing that, sometimes.

This morning, B and I toddled down to Exeter for cake with some friends. It was lovely, very nice to get out and laugh at morbid jokes, convenient to drop my shoes off to be mended and N's iPad to be looked at - it turns out that they're not robust enough to have an eighty-five kilo wheelchair driven over them without screen damage.

On the way, whilst B drove, I made a couple of phone-calls - time in the car not wasted and all that.

I triggered N's quarterly incontinence pad order - so bulky now that she's in small adult size that they no longer fit in the cupboard and have to be stacked on the floor of her room. Then I called the Somerset Waste Partnership, to organise for her used pads to be collected weekly and incinerated, rather than put in to the domestic bin and collected fortnightly.

Somerset County Council stopped including adult incontinence pads in their weekly Clinical Waste Collection nine months ago. So they have to go in the 'domestic waste' that is collected fortnightly and goes to landfill rather than being incinerated, unless there is blood in them, ie, unless a person is menstruating.

Do you know how much two weeks worth of shitty pads smell in this hot weather? No? Stand outside our gate on a Tuesday morning before the bin men get here and you'll find out. They have graciously allowed us another bin, though, so the local wildlife will stop ripping the bags open and strewing everything about.

This is all over Somerset. The health implications of all these pads hanging about for two weeks and then going to landfill is disgusting. Austerity in action. Yay, you go, Tories! Back to the Dark Ages, with piles of shit hanging about in the streets.

To cap it all, the first chap I spoke to on the phone objected to the fact that I used the word 'shitty' in my description of the waste. I find this absolutely hilarious. Surely that's the least of the things your customers are trying to get you to collect if you are working for the Clinical Waste Services?

I don't want to write about stuff that makes me angry all the time, or emphasise how I feel as if I am banging my head against the brick wall of laughably named 'support services' all the time. I don't want to rant about how futile and stupid and nit-picking and downright *exhausting* it all is. I don't want to be a campaigner. I want to be a mum. With friends that I meet for coffee and cake under relatively normal circumstances without scheduling in a mini-battle on the phone first. And children I take to the cinema or to poke things in rivers with sticks. And a husband who I actually spend time with without feeling like we're both wearing heavy wool uniforms and moving bits around on a big table at Duxford whilst talking to David Niven in crackly yet wistful voices.

I want to write about things growing - plants, animals, children, relationships. I want to write about things that make me laugh, not cry. I want to write time-travelling gay romance. I want to write about the mystery of odd socks and why the children are obsessed with the filters on my Snapchat account. I want to write about sun and rain and snow and the smell of grass when I walk on it in bare feet and whether I'm going to bother to make elderflower wine this year. I don't want to write about anger and frustration and grief.

I want to write about life, not death and I am scared that I've lost the knack.

Friday, 15 January 2016

orthopaedics versus orthotics, or Godzilla versus Mothra?

We took N to the Bristol Royal Children's Hospital today to see the Orthopaedic Surgeon.

The plan is to try Botox injections in her feet and ankles, to try to relax the muscles enough to get her feet straight, so she can walk on her Kaye Walker again. None of us, parents or surgeon, want to get in to actual surgery at this point - apparently you can move tendons around to pull the foot in different directions and stuff like that; but we are going to try this first, for obvious 'not wanting to put our child through possibly futile elective surgery' reasons.

So. The appointment was pretty positive. The plan is to inject Botox in to three muscles around each foot and ankle. This will involve her being knocked out with a light anaesthetic. Then we have two weeks doing stretching and moving as much as possible alongside her daily routine - swimming if we can manage it. Then she goes back to Bristol to the Orthotics people* and is cast in plaster again on a weekly basis for a bit to try to get the feet straight, hopefully in 'walking casts' which will allow her to get around on the walker.

Then she should get AFO splints again, and at that point can start to go in her standing frame again every day.

Standing and walking independently have a huge number of benefits alongside the obvious 'it's nice to be able to do it' ones. It's good for the internal organs, digestion, blood flow and bone density. It also helps language and cognitive development in children because you use a different set of words of you move around than if you are sat in one place. Also, social dynamics. It's rubbish if you can't run round with your friends.

We have asked for the orthotics to be done at Bristol because our experience with Musgrove was so poor last year. Thinking back, actually, I haven't heard back from the department manager, who was supposed to be reviewing what exactly went wrong with N's treatment, and letting me know the results of her investigation. Quelle surprise.

All in all, a reasonable outcome.

On the way home we stopped to buy chicken food in Bridgewater and then I had seizures all the way home over the hill. A nice scenic route for it to happen, anyway.

This weekend I plan to rest, drink cocoa, design some decking and play Carcassonne.

For today, that is all.

* Don't confuse them with Orthopaedics, they're different, they do casts and splints and things like that. Truss, I think, too, if necessary, which I find intrinsically humourous.