Sometimes I read a post written by my daughter and it breaks my heart because the pain in her words is the only clue that I have to the pain in her heart.

Other times I will read a post written by Veronica and I know that it was written purely to get the words out of her head, to give a tiny glimpse into how difficult parts of her life are.

Amy is an exceedingly difficult and tempestuous child to parent. She stretches and challenges every single one of Veronica’s parenting skills every single moment of every day.

It is very nearly impossible to get Amy to do something that she doesn’t want to. It isn’t because she is naughty or because she has pulled the wool over her mothers eyes.It certainly isn’t because Veronica is lacking some vital parenting skill. It is because Amy is so focused on doing what she wants to do in that moment, that nothing else registers. Some of the parenting advice that Veronica receives makes me shake my head and roll my eyes with frustration.

I have impeccable parenting skills. My ability to get small and not so small children to behave is legendary. I am also very good with dogs and horses. But with my grand daughter Amy I am at a loss. So I don’t bother with traditional discipline at all. We skirt issues and avoid situations and I use distraction as my main tool.

We do the same things every single time Amy comes to visit. We check for eggs, then together we cook Amy an egg.  We paint a picture or two, play with some clay, watch a bit of telly together or read some books and then we go outside and throw the ball for the dog.

When Amy was still eating gluten we would do all these things at a frenetic pace and at the end of her visit the house would be trashed and I would be exhausted. Minus the gluten we are still very busy together and Amy isn’t quite so exhausting.

Veronica and I have been talking about Aspergers and Amy, we have been talking about how there is a very real possibility that Amy has Aspergers. Now that the A word is out in the open I can look at Amy’s behaviour with fresh eyes. Veronica and I are noticing more and more things that Amy does and more importantly we are noticing things that Amy doesn’t do.

So the next time you see a small child running amok in the supermarket or having a tantrum in the middle of a shopping centre don’t be so quick to judge, to shake your head, to glare at the obviously incompetent parent. And as for the whispered advice that all the child needs is a bit of discipline, a good smack will fix her.You can keep that under your hat as well.

The housework would always be there nagging at me but the lizard tracks were fragile and urgent. Time spent chasing fairies and feathers on the wind is always better than time spent shaking a toddler off your leg as you do the dishes.

When the spouse would roar at me about the mess, I would roar back and slam the door on the offending room and declare that it was fixed. I would try desperately to make him understand that the housework would always be there forever but that the wind was covering the lizard tracks and that small children needed to lie on their backs in the sand and look for dragons in the clouds.

In the spirit of  hope and desperation I applied to do ceramics at the art school in 1991. They applauded my enthusiasm and kindly suggested that maybe a bit more of a background in ceramics rather than a couple of adult ed courses would serve my cause better and my application was declined.

I went home and put my dreams away and immersed myself in the business of raising my children and building my home. I was incredibly lonely but I only had so much energy to spare and I needed that energy for myself.

When the lonliness and frustration overwhelmed me I would rage at the night, I would howl at the moon, I would stand in the middle of ferocious thunderstorms and dare the lightning to strike me and when I emerged unscathed from the storm, I would drink some more.

I couldn’t afford proper materials, so I painted the carpet, the doonas, my clothes, the door of the bus and each time the spouse came home he growled his disapproval of the paint and the mess and I would want to vanish into thin air. My children were my anchor and I would walk barefoot in the garden until the energy of the earth soothed my soul.

I was 25 when I applied to do ceramics at the Art school and I was 39 when I eventually returned to clay.

In those rare moments when I experience regret I sometimes wonder where I would be today if I had persevered with my dream of going to uni and then as I read my daughter’s words or listen to my son’s music, I know that I chose the right path at the time and that there is a proper time for everything.

I suppose if you are going to be in excruciating pain with a bone poking out the side of your leg and unable to move, there are worse places to be than at your desk in front of your computer. I told Vonnie to keep me up to date via twitter.

Here are some of  our tweets over a three hour dislocation.

@SleeplessNights will straightening your leg out make it pop back in?

@frogpondsrock Nope, will tear the tendons.

@SleeplessNights Bloody thing! While you are stuck there you could look up quince recipes for me.

@frogpondsrock lmao – I think not.

Relocated. Excruciating.

It wants to pop out again.

All the painkillers in the house wasn’t (isn’t) enough to deal with that. #ehlersdanlos

@SleeplessNights now strap the fucking thing

@SleeplessNights not that strapping it will help but it will make me feel better.

@frogpondsrock It’s braced with tube bandage, lots of it. Best stuff.

@SleeplessNights Good. Now please be careful, I still feel a bit sick for you.xox.

@frogpondsrock I am being very careful. Can’t bend the leg at all. Funny – I didn’t do anything to dislocate it, just bent the knee.

It is that last line written by Veronica that sums up all my fears and frustrations with Ehlers Danlos Syndrome. The fact that you don’t have to do anything at all to suddenly have a dislocation and be faced with excruciating pain is frustrating and terrifying at the same time.

My husband, son and daughter all have Ehlers Danlos but with varying degrees of symptoms.The Spouse  has only started to dislocate in the last few years and it is apparently quite common that dislocations will only start to present in middle age. David is in the middle of puberty and isn’t as bendy as his sister but to date he has dislocated his shoulder, elbow, fingers and his ankle subluxes. He can make a horrible clicky popping sound with his jaw and I worry that he will do it one time too many and bam out goes his jaw.

They all share the same symptoms of nausea, headaches, insomnia, low blood pressure, dizziness, achey joints, pain, stretchy fragile skin that tears easily, slow healing and they are also prone to infection. The Spouse and Veronica also have Livedo reticularis and Veronica and David have stretchmarks in strange places. They all have allergies, excema and asthma, poor circulation, weak eye muscles with a slight blue tinge to the whites of their eyes and I would trade them all in on new models if I didn’t love them quite so much.

Doctors in Tasmania know very little about Ehlers Danlos Syndrome and so it is very under diagnosed. Medical students only ever see the very extreme cases in medical text books and Doctors often fail to connect the dots. EDS has a lot of similarities with Lupus and EDS is commonly misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia.

The Spouse has two sisters who are suitably sympathetic towards our diagnosis of EDS but completely refuse to believe that their children could have EDS. *sigh*  It is glaringly obvious to me that some of my nieces and nephews are definitely very EDSy and as much as I worry about them, I have to conserve my energy for my own children and grand children.

There are some very good bendy bloggers out there and I would recommend that you click over to Bendy Girl at Benefit Scrounging Scum or Achelois at The Tensile Times as well as my daughter Veronica at sleepless nights.

If you have any questions about EDS or if you think you have EDS leave a comment  and I will get back to you and help you as much as I can.

When David saw me at school he would launch himself at me and I used to have to brace myself so that the force of his hug didn’t knock me over. Then together, we would walk out the school gates holding hands, swinging our arms and smiling to each other. Away from the horror that was a small town primary school full of prejudices.

We were that family. When everyone around us was building McMansions and driving the latest cars. We were building our house room by room from recycled materials. The fact that we had an outside toilet was a major talking point and my children were teased mercilessly by the children of relatives as well as the children of the school establishment. People that had never been to my home would tell stories in lurid detail of the wild drug orgies we participated in and the squalor in which we lived. The fact that we had few visitors and that alcohol was the only drug I used was quite beside the point.

At a time in Australia when people were encouraged to buy buy buy and credit was king. We stayed debt free and went without. The spouse was labelled a dole bludger because he was unable to work due to the pain of his Ehlers Danlos. We didn’t know it was EDS then we just thought he was broken and that his constant pain was due to a very serious motorcycle accident he had been involved in, in 1992 and then compounded by the injuries received when he was shot in a hunting accident in 1993. The label of dole bludger is a horrible one to carry though and living below the poverty line makes you appreciate the things you have.

If people were happy to make snap judgements based on the way I looked I was also more than happy to encourage their misunderstandings by dressing differently and not explaining myself or my motives.

Now that I am a bit more grown up I am ready to start to explain myself a bit. I look at the glitterati girls and they are still desperately holding onto their fragile crowns, their makeup is getting thicker as they try to hold back  the years and I find it hard to imagine that these women’s gossip and innuendo once made my life difficult.

I am ready to step out into the light of my small community and announce that here I am, I am an artist.

Members of the Greater Green Ponds branch of  Tasmanian Regional Arts are building up a collection of art and craft created in the Southern Midlands area. Their plan is to acquire works and lease them for display in public and private spaces through out the Southern Midlands.

I am going to ring them up today and offer to donate Boganvillainy to their collection.

I am a bit nervous, but it certainly isn’t as daunting as walking through those school gates were a few years ago.

The Spouse is very fastidious, some might even say a touch OCD. Where as I am just a human bomb of  chaotic clutter. I am a collector of everything from rusty nails and interesting rocks, to bells and antique bottles. I cannot walk past a secondhand bookshop and I am in dire need of more shelves.

When I was contacted by Nuffnang last week to say that a company that produces cleaning products wanted to advertise on my blog I thought it was a hilariously, delicious irony. Of course I agreed as I am always hopeful that one day I will catch the cleaning bug and my house will look lovely and shiny.

I work in my kitchen at the moment and so when I should be practicing my domestic skills I am messing about with buckets of clay.

As I was writing this post this morning I was forced to actually notice the amount of dust that has accumulated on my bottle collection. The bottles are on a shelf behind the woodheater and are a bit tricky to get to but instead of cleaning the bottles I photographed them instead.

Then I noticed this spiderweb, it is on the left, near the plant. I have lots of spiderwebs in my house, the spiders catch the flies for me and so I leave them alone. I will have to remember to ask The Spouse not to remove it yet as he is forever destroying the spider’s homes, the minute my back is turned. I would like to see the spider catch at least one fly before all her hard work is ruined.

I have run out of space to store my moulds and so I had to put them somewhere where they wouldn’t get damaged. Plonked in the middle of the lounge room floor seemed a logical choice.  The coffee table is also covered with books, novels and half completed assignments but I will tidy that up later.

The Spouse was absolutely chuffed when Amy walked into the house the other day and saw my moulds in the middle of the room. She looked at me and very seriously asked me, “Nanny what’s this mess?”

So there you go my lovelies, If your husbands start to nag you about your messy houses just show them this post and you will be off the hook.

Easter Sunday, back to the hospital for another session of chemo, made sure I left with plenty of anti-nausea tabs, they provided a roast lunch this time and surprise I was able to eat most of it, made Kim feel a bit teary poor baby, I didn’t realise that my not eating was causing her so much worry.

Tomorrow we are having a barbie at Vonnies and it will be another first, another milestone to be gotten through in this first year of living without Mum.

When Mum was having treatment at the hospital, quite often we would have an hour or so between appointments and so we would hang around in town as it was too far to go back home. Often we would browse away some time  in camera shops together, drooling over the latest DSLR’s. Mum wanted to buy me a DSLR but we decided to wait until we went to Sydney together. Mum died three weeks before we were due to leave.

So it was with mixed emotions that Vonnie and I went camera shopping  a couple of days ago. If I hadn’t had Veronica there to explain the lenses and give me a gentle push, I think I would have kept on dithering and not bought a camera at all. It has been very hard emotionally to spend some of my inheritance on such an extravagence as a new camera. But I could also feel Mum telling me that It was now or never Kimmy.

So I leaped off the cliff and bought a Nikon D90 with a very good 200mm lens.

Time to step it up a notch I think and take my photography to the next level.

Not Drowning, Mothering.

I went to Veronica’s yesterday and watched Amy bounce on the trampoline as Vonnie pressed refresh on the bloggie’s twitter page.

I am thrilled to bits to be writing out a congratulatory blog post to the NDM, as her blog is well written and very funny. She writes about her  life with humour and honesty and I find myself nodding along in recognition. You really should do yourselves a favour and go on over and check out her blog, I have no doubt you will add it to your favourites.

I had a small visitor for a couple of hours yesterday afternoon and together we went outside and played in the mud.

Then we went down and fed the pigs and had a bit of a chat about how delicious they are going to be.

We went and raided the fruit trees and Amy found that she didn’t like the furry skin on the peaches but was more than happy to munch away on the plums.

This year has been a really good year for most of my fruit trees, due to a wetter than average winter and spring. We normally struggle for water up here and I am really pleased with how much fruit my trees have produced. Amazing what a bit of water does for a plant.

The whole time that Amy and I were pottering around outside, Harry the dog was at our side. Harry loves the apple trees as he is sure that those green balls are just for him.

And finally here is a photo of my latest garden project. The spouse cut an old water tank in half for me. This autumn and winter I will be busily filling it up with sheep poo, mushroom compost and whatever else I can get my hands on. I am going to turn all the vegie garden into a series of raised beds over the next two years, as sitting on a milk crate and weeding is just so much more civilized that kneeling down on my dodgy knees.

Once Amy had gone home I went to turn my laptop on and found that my grand daughter had decorated it for me. That was my day yesterday, how was yours?

In the last few months of Mum’s illness I was stretched really, really thinly as Mum had become less able to do all the stuff healthy people take for granted. Simple things like changing the sheets on her bed had become akin to climbing Everest.

Everything fell by the wayside, as the physical demands of caring for my Mum didn’t leave any time left over for secondary shit like my own housework or cooking. I am an indifferent housekeeper at the best of times and indifferent quickly turned to non-existent.

After Mum died everything became a major effort and for a couple of weeks I suffered a massive case of the couldn’t be bothereds.Cooking? Bleh. Housework? Who gives a fuck, shut the door. I just could not be bothered doing much of anything.

And then it started to rain and it rained and rained and rained. The dreadful grey wetness of winter nearly did my head in. Please remind me of that, when I have to buy water this summer and I am stressing out about bushfire.

Last week The Spouse was splitting wood and he developed a painful tightness in his chest. To cut a long story short, it wasn’t a heart attack as there wasn’t any of the hormone blah blah blah in his blood which indicates damage to the heart muscle,phew.

The Spouse is off to the cardiologists tomorrow for a stress test which will give us a clearer picture of what exactly is going on. His cholesterol levels were high at 7.8, which is enough to statistically give him the chances of  1 in 50 of suffering a fatal heart attack.

So now my control freak tendencies can really be let loose up on my family. The Spouse needs to lower his cholesterol and all the food choices he makes from now on will be supervised by yours truly.It is well past time that I dusted off the pots and pans and started cooking again. As soon as I hit publish I am going to make a large pot of  fish soup for tea.

But.

Some days an icy hand of fear just grips my heart and squeezes tight.

Some days the fear sits heavy inside my head pushing out all thoughts, except for the ones that tell me that I am afraid. I am afraid for my children, afraid of their choices. Afraid of the possible consequences of their choices, afraid of fear itself.

My fears which are the normal fears of a parent are magnified by the loss of my Mother and by the challenges assosciated with living with Ehlers Danlos. This post written by Achelois, gives me a glimpse into a possible future for my daughterVeronica and whilst it scares me witless, I know that Veronica is a strong young woman who will cope in her own indomitable way.

My son David had a dentist appointment yesterday. Pre-EDS, Dave would have just walked to the dentist from school, had his fillings and then gone back to class.

Post-EDS it is a whole different ball game.

David had to be assessed by a senior dentist in Hobart to see if it was safe for him to be treated at the small local dental clinic. The senior dentist  needed a copy of Davids echocardiogram report and so it took nearly four months of to-ing and fro-ing before it was decided that yes, Dave could be treated at the small clinic which is attached to his school. But, he needed to have a preventative dose of antibiotics an hour before his treatment.

I don’t know exactly why David needs the antibiotics before his dental work, it is something to do with either his heart or his lungs. The Spouse took the phonecall from the dentist and didn’t ask why, he just wrote down Dave’s appointment times.Gah.

David’s Echocardiogram shows that he has mild pulmonary hypertension and the right hand side of his heart is enlarged. He is fifteen.We have an appointment with a cardioligist in September and I am trying not to think too deeply about the implications for my son until then.

But again that icy hand of fear is giving my own heart a bloody good squeeze.

As I was sitting in the waiting room of the dentists, trying to ignore the crap on the tv, I was quietly worrying about my son. I was hoping that the dentist wouldn’t accidentally dislocate David’s jaw.Possible scenarios and implications of a dislocated jaw played through my mind, all I needed was a brunette mournfully wailing for Heathcliffe and the melodramatic scene in my head would have been complete.*Sigh* I have a very vivid imagination.

David’s jaw didn’t dislocate but it became very clicky during his treatment and they want a senior dentist to have a look at it, at Dave’s next appointment.

I know that Veronica has her own fears, regarding the  health of her children but at least she is spared the soul destroying doubt and disbelief, shown to me by the medical profession as I struggled to convince someone that my daughter  really was ill and not faking.

Since Veronica’s formal diagnosis of Ehlers Danlos Syndrome earlier this year everything has become much easier,well much easier within the medical system at least. That little piece of paper from the geneticist means that Veronica doesn’t have to fight to be taken seriously.Her children are being closely watched by the paediatric team at the hospital and there are protocols being put into place for them. YAY.

Isaac’s E.C.G showed a lovely, perfectly healthy heart. Perfect perfect perfect. That is one less thing to worry about and I can prise back one of those icy fingers.

Hmmm am amazed that you cant write 40 words yet you can type till the cows come home…. is this just writing for profit or just a sympathy blog………..god only knows

For fucks sake arsehole, if you actually read the post it is glaringly obvious that Veronica isn’t after sympathy. But of course self centred dickheads like you only see what they want to see. Leaving a nasty,anonymous comment is a cowardly, low act and tells me all I need to know about what sort of person you really are.

Achelois, a lovely English blogger has written about trolls in her latest post The Internet Bully & A Request her post is well worth reading.

I hadn’t really thought about trolls being bullies. I had just thought that they were a shadowy sub-species, sort of a cross between Gollum and Dr Phil. Full of useless advice and observations delivered in a slithery tone of voice.

“Oh yessss my precioussss you is not broken. You issssss pretending.You neeedsssss to get a real job and sssstop writing on the internetsssss.”

I have written a formal comment policy for my blog. It is up there at the top of the page. So in keeping with my current policy I will now edit anyonetoblog’s comment to amuse myself. Even though the comment wasn’t left on my blog, they harassed my child and as such only deserve my contempt. Veronica’s father’s feelings are quite unprintable.

Hmmm I am amazed by you.  you cant write 40 words without falling apart, dont worry writing is overrated as evidenced by my own pathetic attempt.  you can type away till the cows come home I adore you.….you should be writing for profit have you considered a career in journalism. just a sympathetic word or two from you will be enough to make me happy……..god only knows i couldn’t manage like you do.

There now, that is a much nicer comment.

Now on to some happier stuff. My friend Robin took some photos of my work and I have added a ceramic gallery to my blog as well. The photos are all thumbnails and you can click on them to make them a bit larger. The images are only a small selection of my work and I will be adding to the gallery as I find the time to photograph any new work.

You might remember that I was having an exhibition at the Lady Franklin Gallery in October. Unfortunately I had to cancel that in June because I just didn’t have the energy to think about an exhibition at that point in time. I have been invited to take part in a group exhibiton tentatively planned for November.Yay. So I have enough work lined up to keep me busy for months.

Remember the platters that I was working on last month? I have fired two of them and I am pleased with the results. They are gutsy pieces with a raw energy that make me feel a tiny bit hopeful.

These handbuilt platters allow me the freedom to just chuck some clay around and have some fun as well as giving me a large surface area to experiment with a range of different glazes. If you want to know what any of the glazes are, or how I got that interesting crawling  just ask me in the comment section and I will share the recipes.

I will finish up with a piece I made for my Mother. Mum loved this little vase and it will now be my inspiration for a series of  its own.