Goodbye 2016. Hello Hope and Happiness

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So here we are, finally. 2016 has ground to a halt and it seems I am not alone in being ready for a fresh start for 2017. This has been the murkiest, most bewildering year I have seen for a long time; when at times it has seemed impossible to see beyond the next step and momentum only possible through sheer willpower and self-determination not to succumb to the gloom.

To be honest, by the run-up to Christmas I was ready to stop everything. In particular, the end of the school routine came as a relief to us all: Tula has struggled this year with the twice daily removal of her scoliosis brace, being unable to wear it whilst in a vehicle because of the support around her neck as should she be wearing it in an collision there would be no doubt that her neck would snap. Being at home every day she is accustomed to her confinement: each time she is released and re-imprisoned she is reminded of her torture and it becomes a daily struggle for us all. Her health has been poor too: the ongoing challenge of getting her to eat was tested for a few weeks by a persistent tummy bug which tired her out and took away what little appetite she has with the pressure of the brace on her torso. In the bundle of paintings she brought home from school on the last day of term is an unsmiling self-portrait which she explained was her at school, not smiling because she was not happy.

I took a break from my online life which has been very good for us all. It is easy to forget how disconnecting it is for those around you in real life when your eyes and your brain are occupied elsewhere. Particularly so for the younger girls. Elodie has made great progress this year with her general development: she is completely out of nappies day and night, the youngest to do so out of the four by far. Her independence is quite astounding: even in this big old house she is quite happy to trot downstairs by herself at night and use our unheated, unlit bathroom. She is still a handful though: constantly in need of attention of some kind and very vocal about her requirements, which can be exhausting for all of us. Bringing my awareness back to her needs has helped her calm down a little, even if I do find it a little frustrating now that I have become used to my freedom. I do not want her to feel that the only way she can get attention is through negative behaviour: it is easy to fall into the habit of shouting back at a demanding child. She just needs total, positive attention every now and then, surrounded as she is by her older, differently-demanding siblings.

The house has been the most important change in our lives this year: without doubt it has been the best thing to have happened to us since we moved to France. It feels as if we have finally settled here at last. The language is coming more easily to us all – even Tula, the silent one at school, has come home singing in French and talking with her toys in a squeakily invented Franglais which is very sweet to hear. We have our family carte vitale, or health card plus we no longer need to fill up bottles of drinking water from the village tap, both of which make me a whole lot happier! We have conceded that we cannot build a house on the plot as we had planned, and accepting this has released us in all sorts of ways. Sometimes you just have to admit defeat: even if you had the best intentions to make a plan work, there just is no point in making yourself and those around you suffer unnecessarily. I don’t think I even realised just how unhappy I was living in the mobile homes whilst we were there: I only knew how impossible it felt to make any progress when just standing still required so much effort. Now the task of unpacking and organising the wreckage of our belongings is still to do, but again, that too feels so much more do-able with space around us. It is bliss to be able to finally get our lives in order: particularly so for me as I have so much I am interested in that I very easily become overwhelmed with it all. The simple joy of unpacking my books and being able to find materials is thrilling to me when I have so much I want to do!

I plan to do a lot of making in 2017: I have a new patchwork quilt I have started working on, with which I want to explore the theme of female ancestry in my life, with the Grandmother’s Garden pattern I am following as a starting-point for some stitched writing. A big part of this project is about condensing my enormous hoard of saved fabrics so that when we do eventually move – whether because this house is sold and we need to find somewhere to rent, or if we manage to sell our plot and find our own home at last. These precious scraps need to find a purpose in case the time comes when I have to decide what I must do without.

And there are many things I am planning to do for The 70273 Project, one of which is a new adventure in fabric printing with the idea of creating a densely-worked fabric book to be used as a performance prop. This has been put on hold during the holidays as I find the subject matter too traumatic to balance with family life: this serious and sad history needs space and silence to dive into it fully and at the same time to be able to leave it behind enough so as to be able to function inbetween sessions. The horror can seep into your skin if you do not make an effort to buffer each visit.

La Corbeille will be kicking back into action in the New Year with some stitch kits I plan to put together for sale in the shop: bundles of old lace and ephemera for scrapbooking and crafting. I have a new shed to work in, which whilst lacking the light and the beautiful view of the one Jude built for me, more than makes up for with character and photographic potential.

For 2017 I intend to live in the moment: to concentrate on inner calm and self-fulfilment and to devote myself to learning and growing. There has been such a wave of negativity smothering the world lately, with political and environmental issues dominating the news around the world and, without wanting to stick my head in the sand and ignore it all, I do feel that now, more than ever, the focus has to be on personal growth and connecting with people in a positive, uplifting way. Through self-improvement, through creating and connecting with like-minded souls, together we can choose happiness over defeatism: simple pleasures over mindless consumerism.

The future is slow: clear and bright with hope. And facepaint. Lots of facepaint.

House, Home and Holding On.

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So we’ve been living in the house for a few months now and I still haven’t taken many photos or even really announced it as such. It’s not our home, yet we have made it ours for the time being: it is filled with us and our stuff.

I am grateful every. single. day. to not be living in the mobile homes any more.

We had such great plans with those trailers: despite the disappointment Jude in particular felt about losing his barn, our aim was to live off the land as cheaply as possible in order to save money for the new build, which Jude estimated would take about three years to do by himself. He would need to continue finding outside work to pay for materials and keep us fed, and after the work was completed we could sell up and move on, either further south or to the west coast, perhaps to the south of Brittany, where we would find our own crumbling farm to renovate.

Not to be. We discovered, after having lived in the trailers for a year and a half, that should we sell the finished house within four years of completing the build we would be charged an astronomical fee which would knock out such a chunk of the sale price that it seemed pointless to continue. Having lived for so long without mains water to run the washing machine or a proper flushing loo or working shower, I for one couldn’t bear to continue any longer as we were and started pushing for us to find a house to rent. The land may have been free for us to live on, but the price we were paying in stress and exhaustion was not worth it.

In the end it was Chrissie who finally suggested we move into the house. I don’t know whether Jude’s dad had finally convinced her or whether she just realised how crazy it was for the six of us to be living as we were, with all of our stuff mouldering away in the leaky marquee and no further along with our plans, but however it came to be,  I am intensely grateful.

Now there is a desk for Jude to do his paperwork. I have a desk to create – I can leave things out without worrying about them being eaten (I’m not even joking) by Elodie. The girls have real beds to sleep in and space to play. The washing machine works! We can have hot baths and showers any time at all. Best of all, no more  outdoor compost loo.

And, inevitably, us being us, we have started tidying up the land. Left unloved for so many years, gardening not a high priority for Jude while he was renovating the building nor for anyone who made the trip out for a holiday, there is much to be done. Whilst it certainly benefits us during our stay to make it more practical and useful, the fact also remains that the house is still up for sale and whatever we do will probably increase the chance that it actually will sell. Jude has to resist his natural urge to build, even though these lovely, languishing barns call out to him every time he stands in the yard.

We haven’t finished moving our stuff out of the marquee, but it’s getting harder to work up the energy to go over and sort through it all. So much of it is water-damaged and mouldy. I’m thinking we just need to chuck the whole lot into a trailer and put it in landfill. Do I really need to keep all the stuff we brought over from England all that time ago? Things I packed away whilst still pregnant with Elodie? How much will our girls really miss their baby photos and drawings, all those lost objects from a life they have already started to forget – or in the younger two’s memory never even existed at all. We all cart this kind of stuff around with us our whole lives but how much of it do we really need to keep? I cannot separate my attachment to stuff from my need for attachment to stuff: it is my only connection to my past; my life pre-children, pre-France. But do I need it? Here now, is surely all that matters. Who knows where we will be six months, a year from now. Will I miss it in the future? When my girls have all gone down their own separate paths and left me far behind in their daily lives as I have my own family. I’m scared of letting go, but I’m also aware that the stuff itself – the jetsam that drags me back – may be all I am left with one day, and by then be more precious than air.

 

Takes courage to be wonky in a straight-edged world.

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I spent years rubbing my rough edges up against anyone who fell into my chaotic inner world. I was in pain, I couldn’t seem to find my feet anywhere; I didn’t or couldn’t belong. I attached myself to people who did their best to love me back, in their own flawed human ways, but I was always close to the spinning edge: the safe, familiar vortex of despair and heartache.

My mother died when I was two years old. The story goes that neighbours were alerted of her death by my crying after she had drowned in her bath following an epileptic fit. It was just the two of us. How long I was there with her I will never know. My father had disappeared long before: I have just one photo of him holding me as a tiny baby. 

After her death, I was legally entrusted to the care of my mother’s sister, a complicated and emotional woman who had only recently herself undergone a life changing experience by getting married to her Canadian-born student engineer boyfriend. The loss of her sister was a tragedy that subsumed my new mother in a total and unquenchable grief that was never given a voice, never brought out into the light and examined. 

I was not told of my mother’s death until I was about 13, an age when my adopted mother felt I could be entrusted with this information about my past. I was sat down in our front room and given a few possessions kept for me through all those years including a green vinyl-covered photo album containing all the photos that she had taken of me.

The thing was, I always knew everything. I had already, long before, searched through their household papers and found recorded details of my mother’s death that they had no knowledge I knew anything of. ‘Sneaky’ being an oft-repeated epithet of mine. Along with selfish and lazy. From as far back as I can remember, my maternal grandmother had often called me by my mother’s name by accident: this poorly-buried totemic word rising up without her conscious awareness. I always knew of her. Her unacknowledged presence in our lives was palpable, tangible reality for me. 

So I had a lot of rough edges. I suffered from unrecognized, untreated depression throughout adolescence and into adulthood, which after I gave birth to my first daughter became manic and severe, leading to me losing the job I tried to return to after her birth and a permanent, unhealable rift between me and my husband’s family. Indeed, my mother-in-law, witnessing my mental fragility during this dark time and, despite training to be a counsellor herself as well as having spent a lifetime working with mentally and physically disabled people, has chosen to treat me with distrust ever since. 

My adopted mother and I are not close. She and her husband did their very best for me, but they were cold and distant and my lost and forever sad inner child craved warmth and colour. They are neatness and I am chaos kept neat through duty and necessity. I love them, but they will never understand my world that was, the sorrow that they refused to see, that they could not let loose into their ordered, tidy lives.

I am lucky. I now have my very own crazy, chaotic and beloved family. I have my own tribe at last. We are far removed, living here in rural France, from my scarring, London roots. I tell my girls as often as I can how much I love them, I hold them tightly and touch their beautiful faces. We are not perfect by any means: as parents we struggle in the same way that every parent struggles; with anger and irritation at these noisy, irrational lives we’ve created. But we are all of us held close by the heat of our love: there is warmth in our rage, in our daily frustrations because we are real: this is us, there is nothing to hide or keep hidden, no need to nurture secret pains. 

This essay has been brewing in me for weeks now, triggered initially by Jess, who has lately returned to the idea of death – why do we die? can someone just drop dead for no reason? what happens to us when we die? – which has bothered her on and off for a long time. I have always made a point, because of my experience, of being completely honest when discussing important and complicated subjects with all of my girls. I will never respond to any question of theirs with the brusque “I’ll tell you when you’re older” reply that I received to many of my no doubt irritating childish questions. So, my answers to the questions about death have always been honest: that’s the end when we die, our bodies are finished. There may be such things as reincarnation but empirically, there is no justification for believing in that unless you need to use that idea as a crutch to get through life. Lately Jude has questioned my stance on this, suggesting that I should encourage her to believe in heaven, to make it easier for her. And I wonder if he is right, but in my heart it feels wrong to lie to her. I tell her what I believe: our bodies are gone, what remains is what we leave behind, in our lives, our children, our creations. I feel there is something external to us, but I cannot pinpoint it with any accuracy, let alone put it into words. I am attracted to the idea of guardian angels and have been told through a spirit reading that I have my own – described with such a degree of accuracy that it shakes me even now to remember those words. But how much of that is my inner yearning for the mother I lost? We hold such complicated and  vast universes within us, every one of us is capable of extraordinary feats – inventing a spirit guide is totally do-able: I just cannot bring myself to tell my eight year old girl that this is fact.

It is a long time now, since I last fell into that solid silent scream of despair, the blank cold embrace of depression. When the bleakness of pure, inconsolable grief is tight around my heart. When I can’t speak for fear that if I let go of the walls around me my tears will never end. I have my love-long, tirelessly, fearlessly strong, indefatigable husband and my four sweet hearted, shouting mad, angry, happy girls, who found me and hold me with all my rough edges. My lonely and forever heartbroken inner child has finally found acceptance and the love she craved so hard, for so long. Death is never forgotten; my experiences make me who I am: this mother, this wife, this human being. Living, loving, remembering and growing stronger every day, held in the arms of the people who matter most to me.

At last, I find myself home, and free.

Going Around the Roundabout

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There is so much going on right at the moment that I can’t even choose what to start writing about. Each time I think about it I find my thoughts spinning off in all directions. The 70273 Project. Girls in school. Kitten escapades. Emotionally unbalanced daughters spinning themselves into teary spirals. Beach days. BEING IN A HOUSE days. Days (weeks) of packing away twelve years of accumulated house stuff and unpacking two years of badly stored house stuff. I can’t even pick one tangled thing to start unwinding into a story. So in the meantime here are some sweetly still shots I took of the prettiest roundabout I know, which just happens to be one that we pass on the way to the beach. Yes, I made Jude go round it twice so I could get these shots. In fact, this post epitomises my thoughts better than I had anticipated.

70,273 Artworks or All Hands On Deck

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We moved house…. The kids have started school….. My life begins anew….. And I have no idea where to start, with everything I want to do. My hands are itching to create, something, anything. Last night I spoke for the very first time with the quite wonderful, powerfully passionate peach of a lady that is my very darling Jeanne. If I must, I will share her with you too – OUR darling Jeanne. This is the woman who, almost on a whim, created a lifetime’s work for herself as a result of watching a documentary about the T4 program in Nazi Germany which authorised the extermination of 70,273 mentally or physically disabled men, women and children who were judged by official doctors to be unworthy of life.

This officially sanctioned, secret programme of murder took place during a very specific period of time prior to the events of the Holocaust, when the remit grew to include the extermination of every non-desirable element or as we prefer to call them, ‘human beings’. During this specific window of time, between January 1940 and August 1941, doctors in mental institutions across Germany were required to submit the medical records of all those in their care so that a decision could be made as to whether each person deserved to live or was perhaps an unnecessary burden to society. Two doctors were required to read these records and make their judgement by each marking the papers with a single red cross. Once two red crosses were placed on the file, that person was singled out from the institution where they were cared for and killed, first of all by lethal injection and then, as that became too expensive or time-consuming, with gas. Each person’s medical records were examined so that a plausible and convincing cause of death could be sent to the victim’s family in order to not arouse suspicions.

This initial killing program specifically targeting the disabled and mentally ill was officially brought to a halt in 1941, but in fact the exterminations continued and eventually culminated in the deaths of 11 million people during the Holocaust, 1.1 million being children and 6 million Jews. The total figures also include groups targeted by the Nazis such as Jehovah’s Witnesses, homosexuals and Roma.

Jeanne launched The 70273 Project on 14th February 2016 with the intention of making a white quilt block with two red crosses on it, symbolising those marked-for-death records, for each and every one of those victims, and we are now hoping to achieve this within the same timeframe that the Nazis completed their task – just eighteen months. Needless to say, she’s going to need a little help with this gargantuan task. So the word has been spread – around the world! – and a wonderful number of hands have already created over 3,000 fabric blocks which in turn will each be pieced together to eventually create over 1,000 complete quilts to represent these lives destroyed so quickly and callously. Seven of these quilts are already nearing completion, and the first to be completed has already been exhibited in the Cashiers Library in North Carolina USA, where Jeanne lives (not in the library itself, you understand).

With the help of the wonderful Katell on hand to help with translation, I have now set up a sister group to the main 70273 Project Page on Facebook to accommodate the growing numbers in France who have stepped up to lend a hand. The francophone group page can be found here. If you are inspired to get involved, head on over to Jeanne’s blog ‘The Barefoot Heart’ where you can find all the information you need to get going.

And I was thinking… now I have all this free time, why don’t I start a little 70273 Project to run alongside Jeanne’s vision? So I began today, with my very own, one-woman 70,273 Artworks project. In keeping with my natural proclivity towards re-using and recycling as much as possible, I will endeavour to photograph, paint or collage 70,273 blocks of my own – in any size and in any media at all. I’m not a big fan of rules, so the only one I am going to keep to for creating these artworks is that none of the elements involved will be purchased specifically for use in the project except paint, pens and ink. I have started today with the first five, all composed with what leapt into my hands in the kitchen – ketchup, flowers, purse, tomatoes. Progress will be posted here and on my own Facebook page. PLEASE NOTE: this project is not in any way intended to be included or seen as a part of The 70273 Project itself, which is an entirely separate quilt project. This is just a little something to keep this little woman busy at home 🙂

…See how often I have unintentionally mentioned ‘hands’ in this post? With so many people holding hands across the world through their collaboration in Jeanne’s project we can, one by one and all together, use our work to have these forgotten voices heard and in doing so, make sure that this particularly shameful episode in human history does not come around again.

So, We Got Kittens… And Went For A Walk

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Oh yeah. We’ve got three, cute-as-poo pretty little tabby kittens with squeaky voices and teeny-tiny stripey tails. But you’re not allowed to see them yet, because Ms Misty, our kitty wonder-ma, is already freaked out enough with the problems of keeping her sweet babies safe from the shrieking, sticky-grabby-fingered hordes which masquerade as my children. The kittens are a few days old now and we only found them after much ear-noodling from Jude as he hunted her down by tracking her roarsome purrs: he eventually located her beneath our bedroom, nose-to-nose with an Enormous Hedgehog who, judging from the ancient poo littering the area, had been recently ousted from his nest and was waiting patiently, either for her to remove herself or else to seize a chance to scoff one of the little kitties…. I don’t actually know if hedgehogs have nests or just a dent of earth, but it doesn’t really matter as he has now been re-located elsewhere.

Today however, the girls and I had a mild spot of panic as our Misty was spotted sauntering around, kitty-free; after my initial relief to see that she is clearly recovering well, her lack of concern for her brood unsettled me a little, so I began Operation Kitty: trying to detect the whereabout of the babies without being spotted by cat or kids. Not easy. Eventually I resigned myself to assigning the mission to Jess instead, providing her with snacks and a hat so she could play detective instead of me and carried on with my Monday morning thang. Mid-whisk in airing Tula’s duvet on her cabin bed, I very nearly swept all three kittens from their secret snugglespot and out of the window. After quickly counting them and giving them the briefest of checks, I gave Mist a little stroke before covering them all back up again. Earlier on, during her reconnaissance mission, Jess had found Misty exploring a box in my shed, so as soon as she had left Tula’s bed, I scooped each kitten up in a cloth so they wouldn’t have my scent on them and carried them out to their new nest, which I’d already lined with a cotton blanket. I gave Misty a little treat of some leftover chicken and as soon as she’d wolfed that, plopped her into the box on top of the kittens and she’s been there ever since, clearly very relieved to be away from all the noise and danger of our home.

And we went for a very nice (but exhausting) walk by the river Vire, which is splendid at all times of the year, but especially brilliantly green to my field-dulled, housebound eyes. I took an awful lot of photos of leaves, which may or may not ever serve any purpose but who cares?! I must remember how beneficial it can be to bathe winter scalded eyes in healing, glowing green balm from time to time. A virtual snippet of summer to combat those everlong winter blues. And yes, if I hadn’t happened to have been carrying a too-tired Tula on the way back when I noticed the sign about the art installations along the route, I would have dragged everyone to see at least one or two more. Those metal chair-bones are the only Real Art I will meet in Real Life this year, sadly.

…And a postscript: Jude and I are in the throes of discussing Plan, um, 5: this may or may not include purchasing an old house in our village. Depending on the price we may end up completing our nomadic existence thus far in France all within the space of a single square mile (or so). More will, inevitably, follow. (I am already, in my infinitely foolish optimistic way, drawing up Plans!)

One Day At A Time

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Families are complicated social creations. And like anything made, they have tensions in the structure; in the interconnections between the individual elements; the bindings. This then, is the story of how we came to be living in a field in France, a field next to the holiday house of my mother in law and the complicated twists that this has created in our wider family circle.

Way back in 1998, my then-un-met husband Jude accompanied his mother on a search to find a house for her to buy in France. Between them, they discussed what they were looking for: a house in need of renovation with an adjoining barn. The plan was for Jude, a builder by heart and by trade, to refurbish the house in return for which unpaid work he would keep the barn to turn into a house for himself at a later date. At that time Chrissie had reasonably well-paid work as sole carer for her friend’s daughter who has Down’s Syndrome and Jude was, well, in need of a focus.

Slowly over the next few years, Jude worked alone on the house that they found here in Normandy. He looks back at that time now with a mixture of mourning at the loss of his life of solitude (his life now, with a family of four girls is quite a contrast to his life then!) and relief that he got through some of the winters he spent snowed in alone in a barely-habitable shell of a building. The house had previously been home to two old men who had been living in very poor conditions and was originally two separate dwellings. Jude opened up rooms and did a lot of restructuring inside, including digging out and laying new floors and turning an internal barn into a new large kitchen.

It was the kitchen he was working on when I first met him in England during a brief trip back home he made in 2007. I was working at a frame-making company and had been invited to a party and there he was. He wasn’t particularly interested in me, but I was smitten and took him home with me, wanting to never let him go. It was a bit of a shock when I found out he was about to return to France, and that he in fact lived there. Within a few weeks I’d followed him back out (a monumental trip in itself, involving my car breaking down followed by a wildly expensive taxi trip to get to the ferry, which I ended up missing anyway to arrive in France a day late with Jude still there, waiting for me patiently after spending the night in his car because he didn’t have enough diesel to get home and back out again, and then him promptly driving into another car at the ferry terminal before we’d even left the carpark) and within a few months we had moved in together and I was already pregnant with Jessie.

While Jess was still a baby, Jude and I talked about the idea of moving to France, but when the idea was put to the rest of the family there was an uproar. It turned out that Chrissie was NOT happy for Jude to “have” the barn after all. Jude’s three siblings, brought into the debate, were equally unhappy with the prospect of Jude building a home for his family on their mother’s land, despite the fact that all three had always been aware of this long-standing agreement between Chrissie and Jude. Eventually, as a compromise, Chrissie offered us a piece of land for us to build our own house but by then we had given up on the whole idea and decided to stay in England and let the family do what they wanted with the land in France. Jude was devastated: he could not believe that this long-held promise between him and his mum, for whom he’d worked so hard all those years had come to such an abrupt nothing, at a time when he finally had a family of his own, in need of a place he could build a future for himself, something she had wanted so much for him, he’d thought. She had her beautiful, if unfinished, house and he had nothing.

Fast forward three more children to a lovely old Georgian house on a cattle farm in Cornwall which we were sub-letting from a farming couple who had lived in the adjoining house to ours for ten years. Just before Christmas 2013, whilst I was heavily pregnant with Elodie, we were both served with eviction notices as the local council who owned the farmland had decided to sell up. After living in such a wonderful big space we couldn’t face the idea of taking the “normal” route for a low-income family, which would have been to find ourselves a little council house to move into (the cheapest option available to us) so we talked to Chrissie again about renting the house in France with a new idea: this time to turn one of the small outbuildings into a gîte which, as well as providing an extra income for her would also mean Jude could finish the last bits of work on the house and also install a new septic tank for her. In return we would be able to manage both properties for her. To us, this seemed a logical and practical plan for both Chrissie and us, even if it involved a wild leap of faith into the unknown for us – a new country! a new language! We genuinely thought that we would be helping her out as well as obviously needing a home for ourselves too.

At first Chrissie seemed happy for us to do this as the house was not being used for much of the year apart from a few holiday lets and it made sense to make use of the smaller barns. She had started to find the journey to France more difficult by then and money was more of an issue as her work situation had changed and she was having to do longer, harder days.

Then this plan also fell through. We moved into the house in 2014, when Elodie was just three months old. Shortly after we arrived, Chrissie decided that she didn’t want us to build a gîte either and instead again offered us a plot of land to build our own house. This time we agreed. To be honest we didn’t have much choice if we wanted to continue to live in the kind of rural space we love so much. She agreed to rent her house to us for one year whilst we got ourselves set up. During that first year we bought and renovated three ancient mobile homes and erected a large marquee on the new plot to keep all our belongings safe from the elements. Last summer Chrissie finally decided to put her house on the market.

We have been living in those trailers for a year and a half now. It is hard work with four small kids. Apart from the family visiting this summer, the house next to us has been left completely empty over the last year. Chrissie recently suggested that we use the house again and during her last trip over a few weeks ago even talked about us formally renting the house from her for a period of years so that she could have a fixed income from the property rather than rely on the few weeks of seasonal lets that she has had over the last few years.

That now seems unlikely to meet with approval from the rest of the family. Already there have been texts sent suggesting that the amount we are offering to pay is insufficient, despite the fact that money hasn’t even been discussed with Chrissie as yet – she has clearly been discussing it with them before talking to us about it and already the Chinese whispers have begun.

And so the unravellings have began yet again, revealing the persistent weak spots in the texture of our lives.

As of 1 August 2016, this is our situation:

The new plot of land has now finally been signed over to Jude so he can start to put money into it: this means we can put in a septic tank for ourselves and get mains water connected.

Up until now, we have been using our well, dug by Jude last year, but the water from this is intermittent and when there is no rain we have no water from the taps. We have been unable to find out how to get the water tested so we drink bottled water and fill bottles from the tap in the village. Ironically, in the last few days there has been some problem with the tank not filling up at all, so despite lots of rain and a high water table, our taps are still dry.

Even when the water does come through the taps, it doesn’t have enough pressure to reach the water heater in our bathroom so we have never had sufficient hot water for bathing or showering. A mini pump that we used for a while has since collapsed.

There is hot water in the kitchen trailer, which is a little more downhill from our water storage tank, so we can wash in the kitchen sink and can also wash dishes etc.

Our fairly new washing machine has been so over-worked because of the low water pressure that it has now stopped functioning altogether.

 

And a fully furnished empty house sits next door to us with anger amongst the family (half of whom haven’t set foot in France for many years) that we could want to use it.

I feel sad, heartbroken; devastated to be spending another wet and windy winter in these trailers when being back in a house felt so close and makes so much sense: to escape the leaks, the mould and the misery.

BUT.

I am grateful.

For the view from our crappy trailers all the way to the bluey horizon, over the fields and space around us.

For this land that we have: for the space it provides us all; to play, to think, to breathe and to grow flowers.

For the love of our sweet and kind French neighbour here, who would do all she could to help us if we needed her to.

For our loving, happy family unit.

For the strength and dedication of my wonderful husband and our connection to each other through everything.

For the amazing opportunity we have been given to make a good life for ourselves in our adopted land. For our children to learn a new language and cultural identity – we’re in France, yay! We are so lucky.

For the love of my dearest friends who I can rely on to send me aural and virtual hugs and support me through the darkest lonely times: those indestructible connections we’ve maintained over the years.

For the new friends I have made through my new adventures online, in particular Jeanne Hewell-Chambers and The 70273 Project, which in itself has also given me a focus and a fresh perspective on my little corner of the planet.

For my wonderful girls, who teach me every day about joy and the importance of just getting on with things.

For my own reserves of power, which I need to keep reminding myself do exist. I have the strength to get through this. We have a future to get to, but the important thing is to seek out the joy in NOW, despite everything that seems set against us.

Each single thread holds the potential to be part of something bigger than itself. In isolation it can only close in on itself: it can become a rope, a means of connection or it can become a knotted full stop. To fully reach it’s potential – as a blanket, a carpet, a cape or a sail – it has no choice but to join or be joined to other threads. It is possible to choose other threads in life, friends that return your love without question: it is fundamentally necessary to human existence to do so, to create a cohesive social fabric, a living mesh.

What I am going to work on now is slowly and gently detaching the knots that I have no hope of being able to undo and maybe trimming a few odd strands that look hopelessly out of place whilst concentrating on keeping the main body of work intact. Sometimes it is better to have a clear space rather than a tangled, meaningless mess. In this case, the focus is on the loving space of our little family, the six of us and our strength and happiness together wherever we are, whatever obstructions and minor disasters we may face. The details can be pushed aside until we have the space to focus on them more clearly.

One small knot at a time, one day at a time, slowly the future will arrive.

 

 

Tula’s Story, Part One

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Spine

If you were to meet Tula for the very first time, she probably would not want you to talk to her or touch her. She would keep her distance, physically and emotionally, until she had sized you up from a distance and decided for herself if you were a good or bad ‘un. Should you try to take her hand to help her navigate a tricky step for example, you would find it gently withdrawn. Were you to insist a second time it would be snatched away and you would lose many hard-to-recapture ‘good’ points.

Tula was born with Conradi-Hünermann Syndrome, a rare genetic skeletal disorder and a type of chondrodysplasia punctata, so named because the ends of young bones have a stippled appearance. Conradi is an x-chromosome disorder: male babies affected by it very rarely make it to full term in pregnancy because it is so severely crippling to them. As a result, the majority of people with the condition are female.

As with many genetic disorders, the condition is wide-ranging in severity and symptoms. Shortened stature along with a difference in limb length between the two sides of the body are the most striking aspects of the condition: very often babies are born with shorter proximal long limb bones, specifically the humerus and femur, the limb bones closest to the body. These bones are also often asymmetric so that the limbs on one side of the body are shorter in length than the other, which can have a severe effect on mobility, particularly at toddler-age.

Along with growth deficiency, other features of the condition are ichthyosis, blepharitis, cataracts, coarse uneven hair growth on the scalp, kidney problems and scoliosis.

Tula was born with ichthyosis: this is a skin condition named for it’s fish-scale appearance. The skin is weirdly textured, with a rough, scaly surface which can harden and crack and easily become infected. After a very simple home-birth in our house in Cornwall, Tula’s appearance caused the midwife to exclaim, almost in horror, at the state of her skin. She was covered with what looked like at first a weird layer of extra skin which on examination had a lacy pattern to it, particularly on her arms and legs. During the initial baby check, the midwife noted a disparity in the length of her legs and that, coupled with her strange skin, led to us being immediately transferred to hospital so that she could be examined by a paediatrician.

During my pregnancy with Tula I was horribly ill. I felt nauseous nearly constantly and some days could barely move because of it, let alone interact with or care for my other girls. Milly, in particular, suffered because of this.Towards my due date I then got a sinus infection which was so severe I could not lie flat in bed and felt as if I was drowning. I couldn’t sleep, I couldn’t eat. It was one of the most utterly miserable points in my life. At one point I remember sobbing at Jude to never ever get me pregnant again, that I would prefer death to the suffering I was in. Hi Elodie!!

So when the paediatrician informed us that we would be required to remain in hospital until tests had been conducted on Tula to ascertain whether her appearance was an indication of an underlying abnormality, I pretty much lost the plot altogether. We stayed on a neonatal ward where the new mothers were forbidden to carry their tiny, needy babies in their arms when they left their rooms; babies were banned from eating areas on the ward and co-sleeping was extremely frowned upon. As I have co-slept with all of my babies, I would leave Tula on my bed to go to the bathroom and come back to find her neatly packaged in swaddling and placed in the hitherto unused crib in my room; I was told I had to leave the door open at night so they could check my baby was safe in my bed; my window was closed if I tried to open it. Because of the ban on babies in the dining hall, I refused to eat and stayed with my baby instead. Eventually I was brought a tray and treated as if I considered myself something special.

I absolutely cannot understand how an idiotic health-and-safety rule can be enforced due a fear of possible litigation in a place where the most vulnerable and poorly babies are most in need of their mother’s constant presence. That the law requires that mothers push their infants in special trolleys in hospital corridors “in case they drop them”. These are babies who are most in need of and benefit most from kangaroo-care.

Eventually, the tests resulted in the diagnosis of CHS and we were mercifully released form the hospital and Tula came home to await further test results. A number of other examinations and investigations quickly followed, including genetic investigations of Tula as well as Jude and myself and in fact the majority of her first two years were spent in hospital appointments as well as appointments with a disability team to monitor her developmental progress.

Pretty early on we started to notice that her spine was an odd shape and that led to the discovery that she had begun to develop scoliosis. We were given the choice of whether to use a plaster bracing technique as pioneered by the visionary Min Mehta or to use a removeable plastic version. Mehta, who suffered from scoliosis herself, believes that early use of the technique of casting a plaster brace to hold the spine in a fixed position can radically decrease the extent of the spinal curve.

Plaster bracing using Mehta’s technique involves stretching and rotating the spine under general anaesthetic into the corrected position before adding the plaster jacket, which is then worn for up to three months until outgrown and then replaced. The restriction of the brace means that the curved spine has no choice but to correct itself as it grows. Mehta’s research has shown that use of this technique can considerably improve idiopathic scoliosis in young infants, particularly so if used prior to the age of two, which is when the bones are comparatively soft and malleable.

Needless to say, we were horrified at the idea of putting our new little baby through this treatment so, because we were given the choice, we opted instead for the removable plastic version and her bracing began a few months before her second birthday. We did eventually also start plaster bracing as well, a few months on. However, during this time in Cornwall the curve of her spine actually worsened. My (unsubstantiated) theory is that because her scoliosis is non-idiopathic, ie it has a specific cause, it is actually far more aggressive than other more commonly found idiopathic types.

Since living in France we have had zero input into her care: she has been in a plaster brace since she began receiving treatment here. The brace is put on her without putting her to sleep: she is placed in a rack and then the plaster wrapped around her whilst she is conscious, with just local anaesthetic. The first time Jude watched her being treated like this he came back almost in tears at the apparent brutality of it. There is no nannying of concerned parents in France: you simply are not qualified to have an opinion. However, in spite of this, I now feel strongly that we should have had her in plaster as early on as possible. Children do adapt and those young, soft bones can be treated far more easily at that early developmental stage.

Tula’s spine has significantly improved since we have been in French care: the curved shape of her back is far less pronounced than we have seen it before. The x-ray shows the extent of the side-t0-side curve of the S and the pressure that her lungs are under.

Tula has been free of any brace for the last week, she has been able to move and flex just like any other child, for the first time probably since she can remember, other than for those single nights prior to a new plaster being fitted, when she has been able to bathe. She has been normal.

This afternoon, Jude is taking her to Caen to have her summer plastic brace fitted. I have spent time talking to her about it, and even though she is unhappy about it, I feel she understands to a certain extent that she has no choice, and that it is to help her back. Even though I know we have no option but to continue bracing her spine, my heart breaks to think about her being put back into her prison. These photos I’ve taken of her over the last few days show how flexible and relaxed she is: she can raise her arms above her head, something she is unable to do in plaster. As well as being more comfortable and able to wear the pretty dresses she adores, she is also able to be independent: she can wipe herself after using the toilet, for example. She is such a capable girl, it is going to be even harder for her to re-adapt to her restricted life again, and it is this that makes me want to cry today, event though at least this time she will be able to be released periodically for bathing and swimming, which will hopefully help her come to terms with it.

So she has gone to see her ‘special lady’ who although she really likes her, she will say nothing to: not a squeak will issue from her mouth. I don’t know how this new plastic brace will fit her, how restrictive it will be or how uncomfortable. I will wait for her return and cuddle her and let her be grumpy and difficult. She has the right at least to express her feelings of frustration. And I will cry a little now at her loss of independence once more so that I will have dry eyes on her return and the strength to support her through this.

Unknottings, Cat Kisses & Letting Go Of Bad Habits

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I love my family. A favourite thing I like to do though is to stay up late in the blissful silence of them sleeping, getting shit done. Or maybe just reading Facebook. Sometimes, like tonight, I sort through the medicine cabinet and build a pile of expired drugs that no-one needs or is likely to need within the printed expiry date.

Ideally of course, I’d be in a large cosy studio space: able to dabble at will in whatever project has me around the neck and won’t let go. This week has mostly been held in the fading grip of a long-time-sat-doing-nothing blanket project and a fresh nose-dive into Dremelling anything I can get my hands on (so far shells and china smashes) in the periodic vague lurch I make towards jewellery-making. I want/need/crave to be making clothes for myself but it’s too much of a challenge: I need projects which give me quick-fix results within a few hours, not the weeks/months it’ll take me to learn new skills. I even padded out Maud to make her measurements more like mine; Jude’s response “Are you making a fat bird?” “Um, no, that’s actually my size…”

The threads I’m using on the blanket to overstitch the original, unravelling hastily machined joins are all salvaged from a bundle of knotted and tangled tapestry wools which I bought as part of an Ebay lot of old fabrics. It feels good to unify this blanket with more handwork. The circles cover moth holes in the original fabrics and I may embellish them as well at a later date. I’m wondering whether and how to add a backing layer to it to cover the joins.

The downside of my naturally nocturnal predilection is that I am one grumpy mother in the morning and often later on through the day as well. This can easily spiral into a rage of dissatisfaction and frustration with the rest of the family which has the knock-on effect of making them squabbly and irritable with each other, thus continuing the spiral by making me roar at them some more. All because I’m tired.

And I rarely achieve a great deal at night either.

But the bliss…. the mental and physical clear space: free of the demands of anyone under 3 feet tall (apart from possibly tickling Lucky’s ears as he harrrumphs and flops down beside me on the floor) is always irresistible.

Yesterday Jude quit smoking. No plan, just did it. Right at the beginning of the school holidays, just when I am in the middle of a week-long “what the hell is wrong with my head, why am I angry all the time? oh yeah, maybe I should start going to bed earlier” phase. Result? Cross parents, cross kids. Not good. So before bed, the girls and I all sat and played a few games together to try and rescue what had been a bit of a non-starter of a day. Jude had a little pre-emptive bedtime lie-down, to find his inner quiet space that doesn’t whisper sweet nicotine-laced nothings to him, which turned into well, actual bedtime, at 8pm. Who needs reality when it just keeps kicking you in the nuts to get you to start smoking again?

Lellie is slowly emerging from a terrible hacking cough that she has been swimming though for about two weeks now… she is at the ratty tail-end of it: snotty, whingy and argumentative. She will grab and pinch when she loses her temper: Tula is an easy target, ultra sensitive as she is to hurts of any kind.

And poor Tula: she went to Caen recently to be fitted, we thought, wth her new plastic summer brace which Jude and I had talked to her about and even taken her plaster brace off in preparation for. In fact instead she returned home with the plaster brace re-fitted and re-taped shut: hugely disappointed, and I’m guessing, pretty pissed off with us too for not telling her the truth, as she saw it. She was looking forward to having buckles to undo! Jude looked quite grim when he was trying to describe the plastic to me: apparently it has a wire contraption to hold her neck in place and sounds positively medieval. I can’t see her being very happy in it.

So, with all of these elements flying around us as individuals, it has been a hard kind of week. The high point was going to the beach last week: we needed to have a good day out together before Jude starts work again. I’m thrilled to say that a client who had almost fallen for a malicious builder offering a rackety over-priced quote against Jude’s realistic one has finally seen the light and chosen Jude for the job. This is an enormous relief for us; most particularly for Jude, whose sense of moral justice was thoroughly shaken when it looked like he was going to lose out to someone he could clearly see was a swindler. It really has been a struggle for him having to deal with the many crooks he has met since we’ve been in France: he’s been ripped off by clients not paying him for his work as well as met numerous builders who knowingly overcharge and lie to their clients. None of them have been French, I have to add.

So the medicines are re-arranged and in order, my threads are all neatly balled; Jude is scowling and sleeping a LOT and I am aware that I need to slow down again. Sometimes I can feel myself just starting to spin slightly off kilter at an un-maintainable frequency which is usually quite self-destructive. I have a bazillion ideas fizzing around in my head every day and it can feel overwhelming. I’ve signed up to a zen email newsletter for a little reminder of how to make slowing down a little more achievable. Like dress-making, this is a long-term project that I will not be an instant success at, in the way I’d like to be with everything I want to do. But it is always so important to take that first tiny step forward.

I’m tired and feeling a little short on perspective this week. I felt snubbed recently by a comment directed at me as one of  the ‘cheerleaders’ of a Project I’m involved with – you may have already read about it here or here: it’s a project I feel enormously passionate about and do my best to be as active and supportive as I can with; not only because of my intense admiration and adoration of Jeanne, the wise and wonderful wonderwoman behind it all, but because of the ideas behind the project, which in a different time and place would have had a massive effect on our family. Of course, there is no reason to be hurt by a tiny, inconsequential comment, but it stung for some reason; as if my support for the work of the people in the group is just somehow tinselly and unimportant. CHEAP, somehow. I know myself well enough to realise that this is just Bad Chloe boxed-in thinking and one of my mental areas most in need of a good de-clutter for everyone’s sakes, not just my mental health.

My goal therefore: to gently untangle and sort through my mental clutter and work on getting it into a better state than it has been for a while. Wish me some quiet, non-tinselled but possibly slightly sparkly good luck, will you? Perhaps I’ll start by getting an early night tonight. Dammit, it’s nearly 3 am already.

 

 

 

A Watery Kind of Week

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Really. It hasn’t stopped raining or being grey. Almost to the point where I’ve forgotten that this is truly summer. Oh wait, we’ve had the solstice so the nights are already drawing in again dammit. There’s a Douglas Adams book (The Long Dark TeaTime of the Soul, maybe) in which a truck driver is followed around by rain wherever he goes because he doesn’t know that he is a Rain God. He keeps a note of every type of rain he encounters, and gets very grumpy about it. We’ve certainly been treated to a good selection from his list in the last few days.

Spills. Every day something gets poured on the floor/table/child in an epic way. Today Jude knocked an entire washing-up bowl of dirty dishes, in hot water, onto our kitchen trailer floor, which has that particular kind of wood-effect flooring that hates water. Not good.

It’s just been a really wet, drippy kind of week. Soggy.

And then there’s Brexit. Which has pretty much broken our world. Temporarily, but emphatically. The majority of Jude’s clients are expats from the UK who have bought property to renovate here in Normandy as a retirement project. They have very little money (or they would have relocated further south) so they want cheap, English builders to work on their houses. So up until now, Jude has had plenty of work, so much he has even turned people down. Britain leaving Europe has changed that completely and has made us aware how fragile our existence here really is, reliant as we are on these expat types for our sole income. No one knows how this change will affect their futures here, no one has any idea how this will play out in the long term, everyone is just waiting.

The only thing to do when everything feels as gloomy as this is just to knuckle down and get on with what you can. We have decided that we are going to concentrate entirely on getting this piece of land looking as good as we possibly can so that it looks irresistably beautiful by the time we come to put it on the market. Jude has taken down and replaced our neighbour’s fencing on both sides of her garden and begun preparing our side for hedge planting. Doing everything on a budget which still allows us to eat has been tricky these last few weeks with zero income but it is still satisfying to see some progress. Most of the plants we’ve put in so far are cuttings I took about two years ago; the majority are rosemary, which rooted incredibly easily and quickly and a few bits of honeysuckle from the roadside which I also rooted for the first time. This seems to be my new thing: I’ve lost track of the things I’ve snipped and potted up this year… my latest addiction is to try to root rose cuttings and I would be so happy if my lilac cuttings survive too. Note to self: label everything! You will NOT remember.

The girls finish school this week and then we have Les Grands Vacances, when France basically shuts down until September. Nothing is open, everyone is at the beach if it’s sunny. One thing the French really do spectacularly well is to do everything en masse: the right time to do things is when everyone else is doing them too. The looks we get if we, in our English way, sit on a bench and eat a sandwich when it’s not lunchtime! Craziness! Jess and Milly once asked their neighbour for a biscuit when they were over there playing together and were politely informed that it wasn’t biscuit time…

We did have a bit of a treat this week actually; our lovely neighbour Françoise, of the new hedge, invited us over for lunch. Now, in England if you were to pop over to a friend’s house for lunch you might be offered a bit of quiche, maybe a little salad and a cup of tea. We started with aperitifs (white wine and cassis for Françoise and I, Pernod for the boys – I silently waved goodbye to Jude at that point 😉 with a selection of nibbles. Then, cold meat stuffed with a mayonnaisey salad mixture. A little pause, a few anecdotes, more wine. Then the main meal: beef bourguignon, mashed potato and gravy and oh, it was heavenly! Just perfection. And more wine of course. Red with the meat. Of course. And then egg custard pudding. More wine. Then coffee. And dark chocolate. We waddled home together afterwards and collapsed in a puddle of contented after-dinner haze. And then picked the girls up from school and fed them pasta. Of course. Lellie slept VERY well that night: she spent the whole time playing with Françoise’s four-month-old fluffy puppy, who she’d picked up from a local farm having gone there to buy some chickens. Evia, her previous dog, died fairly recently and Françoise was devastated and swore she’d never have another dog. Then turned up at my front door a couple of months ago with a little white cloud of two-month-old fur, looking slightly shell-shocked but ecstatic, telling me that she’d gone to the farm and out of the litter of puppies she’d chanced to find there, this one had jumped up into her arms – chosen her. And promptly left a little pool on her lap.

We will get though this miasmic trough that we’re in. With our wellies on, spades in hands, even if there are days when it really does feel an awfully long way off, we will wade forward to the bright future that must surely lie just ahead, sniffing the roses along the way.