Good morning internet, how are you this morning? I woke up this morning and the first thing I thought of was that last night, I publicly announced that I am participating in the Worlds Greatest Shave next year. I have been known to cook up some seriously harebrained schemes late on a Saturday night before this one.  The difference being that all those other schemes generally involved alcohol and ran out of puff when I woke up on Sunday and remembered what I had done and then hoped like hell that no-one remembered my rash promises.

This scheme is neither harebrained nor rash. I am committed.

So my lovelies, shall we make a date for Saturday the 17th of March 2012 and I will shave off my hair if we reach my goal of $5000

Now back to today’s business of sharing photos that might otherwise be consigned to spending the rest of their days in a dusty folder in a forgotten hard drive.

The Blurb

I take a lot of photos and most of them are just sitting around in folders on my desktop not doing anything. I thought that a dedicated post once a week would be a good way to share some of these photos that otherwise wouldn’t be seen by anyone other than me.

I am also remarkably absent minded and I put photos into folders and think that I will publish them later on and then then I never do.

So I have started a photo meme that anyone can join in and play as well. The rules are so simple as to be virtually non existent.

Just add your name and URL to the Mr Linky.

Publish your photos on your blog using the “Sunday Selections” title.

Link back here to me.

Easy Peasy.

The Photos

Because if it wasn’t for her I would have stopped swimming long ago.

This blog is only a slice of my life, it is a tiny snippet of how things are. I use the blog to get the words out of my head. I write out the sad, press publish and then walk away. The simple act of writing out how I feel, helps me to make sense of my emotions so that my head doesn’t explode with the weight of the words circling like so many hungry buzzards inside my mind.

I think hungry buzzards as a metaphor was a bit over the top but the image  of words with wings flying in lazy circles is making me smile.

I like this internet connection I have with you. I like the fact that Jess can hear the stones whisper, that Achelois completely gets where I am coming from, Janet sends me dragonfly notebooks and youtube clips, April sends me chocolate and Christmas ornaments that remind her of dragon eggs.

There are far too many of you to list but you all help me and I am grateful.

But there is a dark side to the internet community as well. A darker side that is giving me the shits. Trolls are not uncommon, plagiarism is rife, a holier than thou attitude is starting to come to the fore, cronyism is becoming more obvious and mini dicatorships are springing up left right and centre.

And now the Australian mummybloggers have a manifesto.  I will not be signing the bloggers manifesto. I will not be told what to do. I will especially not be told what to do in such simplistic terms, as if I am a child tottering about within the interwebs being told to “play nicely now.”

I like my manifestos to have a little more substance, to be a little heavier in weight, I like a manifesto that makes me think. My personal favourite is A Humanist Manifesto. Then there is the Dada manifesto, or the Communist manifesto or even the SCUM manifesto to give my brain an early morning work out.

But this post isn’t about blogging this post is about Dory whispering to me, to just keep swimming.

I took my teenage son to the doctor yesterday with the sole intention of getting him a prescription for anti depressants.

No mother wants to hear their child tell them that there isn’t any point in living because life is just too fucking hard.

The pressures of a new school environment where every bogan bully wants to fight the big guy in order to prove they don’t have small dicks. The constant pain from his Ehlers Danlos syndrome. The ongoing grief and loss from the death of his confidante and main support person, his Nan. All these things combined with the normal adolescent pressures were enough to send my son hurtling into a well of darkness and despair.

Our family GP could tell I meant business and he wrote out a prescription for David. He talked to David about lifestyle choices and the need for exercise and sunshine.

He also in one sentence totally dismissed David’s Ehlers Danlos Syndrome as being a contributing factor towards his depression.

For Fucks Sake.

This is the reality of living with a rare genetic condition in Tasmania.

Sometimes it is all just too hard for me as well.

But I am an adult, with 45 years of life experience behind me. I know that nothing is ever as hopeless as it first looks and I also have the clay which grounds me and gives me an outlet for my rage.

Dear internet, here are the words that are in my head.

I give them to you, so that they stop flying around my mind.

I wonder if one of the reasons for the reluctance to talk to our young people about suicide is the mistaken belief that we might give them ideas. As if by starting a conversation about suicide we might inadvertently plant the seed of death in their heads.

On Monday evening I went to bed early as it had been a long week and I was knackered but there is never any true rest in my house whilst my teenager is awake as he bangs doors, clatters dishes and clomps about the house late at night in an eternal quest for food and facebook.

There wasn’t to be any rest for me that evening either as one of David’s friends had put a suicidal status update on his facebook page. I lay awake in bed listening to my son trying to contact his friend, X on the telephone, hearing my sons voice rising in fear as he demanded that X pick up the god damn phone.

After about 15 minutes of distraught phone calls and frantic inboxing with no response from X, I ended up in the car in my nightie driving David down the road to X’s house.

I was so tired I was a bit trippy and the memory of my son frantically ringing and ringing X’s mobile has become less real now. Eventually when we were about half way there X’s brother answered the phone telling Dave he had come home from work and found the boy passed out in his bed covered in blood from multiple slashes to his arm and wrist.

Shit.

Luckily the cuts were only superficial and didn’t require stitches.

David stayed with X that night and the next and on Australia day I picked them up and drove them down to the Mona museum.

I don’t know what I was hoping to achieve by taking the boys to Mona. I know that I was hoping that the museum would work her magic on X. That he would see that there is a whole other world of beauty and art and expression out there.

That there is never only one path.

That it is okay to be different.

That we are all different.

Maybe I was also a little bit starstruck by the sheer amazingness of the Mona museum and I know I wanted the boys to share my joy because in hindsight Mona really isn’t the place to take a confused and sensitive 16 year old. X was totally freaked out by the place. The darkness of the rooms made him jumpy and video art works that my eyes had only skipped over because they weren’t my cup of tea drew the boys in and they were repulsed by them. X was horrified by the wall of  porcelain vaginas and declared Mona to be totally creepy.The boys didn’t even glance at Snake as I took them to see the fat car hoping that the sensual curves of the car and the brightness of the red bodywork would at least  be a positive experience for them and it was.

As we drove away from the museum towards the city park where they like to hang out with their friends, we had a brief discussion about what is art and what isn’t. I had forgotten the black and white certainty of being sixteen, of a sixteen year old perspective that art has to be beautiful in order to be called art and I worried if I had done more harm than good.

On the Thursday morning I took X into a youth counselling place, I had previously spoken to them about X and they had prepared a packet of pamphletts and such for him. I waited in the car whilst Dave and X walked into the building and I knew that I had done all I could for this boy.

It is never easy when it is someone elses child.

Years ago an old woman held my toddlers hands in hers and told me, this boy is going to be a healer. Over a decade and a half  later I watch as my child gathers the broken to him, as the broken are drawn to him and I worry.

It is never easy when it is your own child either.

I remember when I was a surly teenager whining at my mother about the cruel injustice of having to dry up the dishes or clean my room. Whine, whine, whinge, whinge, when  my mother finally lost her temper and snarled at me that she hoped that one day I would have a daughter  just like me.

Her words always stayed with me, probably because it was also one of the few times that my Mother slapped me. I was an incredibly self centred and selfish teenager who then veered off the rails into extreme misbehaviour once I had escaped from school.

It isn’t my daughter who is like me, though Veronica and I are very alike.

It is my son David that reminds me so very very much of my teenage self.

We even had similar haircuts at the same age.

Shoot me now.

That is what I reckon this post will be, all muddled up without a coherent train of thought running through it to pull it all together. But that is life. Life is messy and muddled and I just make it up as I go along and hope like hell I am doing the right thing.

I started to write this in response to my daughter Veronica’s post, about her grief and her sense of aloneness in all she is facing at the moment.

I had a long talk with Veronica yesterday, as we do nearly everyday. She prepared me for the content of post that she had written knowing that her sadness would make me cry. My parting words to her in her aloneness was the only truth that I could give, that at the end of the day she is “The Mother” and she just has to suck it up and get on with her life as best she can.

The only comment I could leave her after I had read her words was, to just keep on putting one foot in front of the other.

Because that is all we can do, just keep on plodding along.

The Ehlers Danlos Syndrome makes everything doubly hard for my little girl and then you throw a sprinkle of Aspergers into the mix and I don’t see any easy days in my daughter’s future at all.

So there is grief on top of grief.

Grief for all that we have lost with the early death of my Mother. Mum was an energetic whirlwind of a woman. A 5 foot tall bundle of contagious, hands on practical energy. Her catch cry was, “Lets Go!” and go we all did, swept along in the wake of Mum’s enthusiasm for life.

Grief for the loss of easy children, with simple answers for Veronica. We all want our children to be happy and sometimes the despair I hear in Veronica’s voice is enough to bring me undone. Again.

There is also Anger, frustration and  a good serving of stress to top it all off.

I am slow to get angry but when I do my anger is like a flash fire, hot and fierce and all consuming. I am an Aquarian born in the year of the horse and my Chinese element is fire and apparently for those that know these things I am true to my signs.

I can feel my anger building. Anger with those that make my daughter’s life hard. Anger with members of “The Spouses” family who wont believe that EDS is real. And a general delayed anger that my Mother is dead because everything would be a hell of a lot easier with her here to help.

I believe in truth and for those medical professionals and assorted bystanders that don’t want to hear my truth, your denial isnt going to stop me saying the words and fighting for the best outcomes for my family.

Ehlers Danlos Syndrome isnt an easy illness to deal with. Ehlers Danlos Syndrome is pretty much invisible and those with EDS are used to being in pain, or feeling sick all of the time so they don’t make a fuss. But as the mother of two EDSy children and an EDSy spouse it is very hard for me to watch and feel helpless in the face of their illness. So I do the only thing that I know how to do and that is support my immediate family and  try to educate other people about EDS.

I simply do not have any emotional energy to spare for those people who are unwilling to make an effort to understand what my family are going through on a daily basis.

The Spouse can not stand for longer than five minutes at a time without feeling like his hips are going to fall out and his back is on fire. He put up with this pain for a long time and was starting to spend longer and longer in bed because it was the only place he could be pain free. Until I dragged him, unwillingly I might add to our family GP and organised for him to have better pain relief in the form of slow release morphine patches. The Spouse has your typical Aussie blokes attitude to doctors and wont go to the doctor unless I push it. The Spouse’s remedy for his pain is to just drink more beer and hope it goes away enough so that he can sleep.

For a man with a very strong work ethic it is very frustrating for him to be limited in what he can do and that frustration often presents as aggression.I don’t take any notice of the grumpy old bugger when he is having a whinge and his anger whilst loud, is mostly directed at himself.

The parts of your brain that deal with pain are right next to the parts of your brain that deal with anxiety. So pain and anxiety go hand in hand. The Spouse hasn’t been to any of my exhibitions as he doesn’t like crowds. He wont go into the city and the only time he willingly leaves the house is to go fishing.

Both my children have varying levels of anxiety as well, this is all part and parcel of the Ehlers Danlos Syndrome.I am hoping that the psychologists at the pain clinic at the hospital can help Veronica without having medication that turns her into a zombie.

As I wrote earlier when you throw Aspergers syndrome as well as Coeliacs into the mix it makes for a very challenging headpace. I am missing my mother dreadfully and I worry about my grand children a lot. So I throw myself into my work and join another committee, set up ceramic blogs and facebook pages so that I don’t have to think too deeply about the future.

Hello my bloglings, I need your help.

Next month I will be in Melbourne for a long weekend. We were supposed to be going to Raymond Island for a wedding but that has been cancelled. The Spouse hates travelling, loathes big cities with a passion and with his grumpy hat firmly on his head has decided to stay home with the dog.

I have given The Spouse’s plane ticket to David’s girlfriend, Bubbles and I am really looking forward to spending four days in Melbourne with the kids.

The last time David and I were in Melbourne was five years ago with Mum.David was 11 and we did all the normal kid focused touristy things. The zoo, Vic market, the aquarium etc.

This time I will have two teenagers with me who are interested in street art,food,clothes,good coffee and music. We will be using public transport and I wouldn’t mind checking out some markets on the Sunday.

I was thinking of exploring the laneways and visiting Chinatown.We will be having a look at Lygon street as well as going to the National Gallery and the Museum.

So this is where you come in. What do you suggest that we see and do on our four day trip? What hidden gems are there for some Tassie country kids to see that will blow their minds?

And for those of you not from Victoria here are some photos I took this morning on my walk.

Here is one of my finished sculptures in the garden, I have filled this with water and once some algae starts to grow inside the pot I will put some tadpoles into it.

That is how I feel today, all blurred and mimsy. Yesterday I felt shattered, emotionally shattered and I missed my mother with an intensity that had me weeping at inopportune moments. It must be quite disconcerting to see a woman weeping into the oranges at the greengrocers.

Amy is being assessed by the early intervention people and she has some sensory processing issues. Veronica will write about this in due course and I wont go into detail other than to say the news reduced me to tears. I see a bright future for my grand daughter as she will be a strong, talented and determined woman but I also know that her time at school wont be easy and that makes me unbearably sad.

My gifted and intelligent youngest child has taken under-achieving at school to a whole new level. His school report is almost a carbon copy of mine at the same age and I worry about my son.

The spouse is as grumpy as usual, though he smiles and pulls me towards him for a hug when I take my teeth out and pull old lady faces at him.

The dog has rolled in roadkill this morning, thoughtfully filling the house with the delicate bouquet of putrefying possum. I am trying to ignore the persistent whining at the backdoor and I wish it would hurry up and warm up a bit so I can hose the dog down without us both risking hypothermia.

This Sunday the 15th of August is the opening of the Tas Ceramics Society’s annual exhibition. It is being held at the Rosny School house Gallery and will run until the 5th of September. I have two pieces in this exhibition and I will post some photos later on in the week as I forgot to take any before I delivered the pieces to the gallery. *doh*

Making a film is an incredibly time consuming and eye straining job. I really underestimated just how much work was involved and so I have temporarily postponed the zombie, mutant fish gorefest. I am working on a project using vision that my son and I shot while we have been driving through the Brighton bypass road works.

I have finished my three week sculpture block and it has been a delight to work with Belinda Winkler. Thanks to the ideas that Belinda shared I am going to make  some quite large dragon eggs for installation at Chauncy Vale and I will publish photos of the sculptures once they are fired.

I cant decide which of these images I like best so I have published them both.

Last week Brenda asked on her blog, Mummytime, “where do you hope your blog will take you?”

This morning I followed  a twitter link to a blog post that asked why do most artists blogs fail?

I commented with Interesting point but it all depends on how you measure success. I am an artist and I have a successful blog as well.

So this morning the ideas have meshed and I need to ask the question,

“How do you measure success?”

This time last year I measured my success by my ability to keep those I loved, alive and safe from harm.

I failed to keep my mother alive. The cancer that consumed her was  too strong and the strength of my love was not enough to save her.

My love was strong enough to let her go peacefully though and Veronica writes about it beautifully here.

I failed to protect my daughter from my brother and in his pain he lashed out bitterly at my girl and wounded her deeply.

I am an only child.

I am an orphan.

I am motherless.

I am successful.

We have survived the first year and my son is alive.

I kept my son alive in those dark months following the death of his Grandmother. It was touch and go there for a while and I watched him like a hawk.

I didn’t restrain him when he punched the walls.

I screamed back at him when he screamed his anguish at me. I held him as he cried like a baby and my tears mingled with his, I fed him pizza and let him sleep and protected him as best I could.

How do you tell a 15 year old that grief will pass when you are so immersed in the same grief and the tunnel is too long for even the tiniest glimmer of light?

I managed to get through this last year because of my blog. I could write out my grief here. When there was a deathly silence after the funeral and only my closest friend rang me, I came to my blog for solace. When my head was going to explode with all the words I needed to say I came to my blog.

And you listened. You sent me chocolate and clippies, classical music and cards. You commissioned my art work and made me think of renewal. You posted photos on your blogs for me and You held me close and let me cry. You filled my inbox with  emails and when there werent any words You hugged me and now we are here together.

My blog is successful and that is down to You.

Yesterday afternoon my daughter rang me, Veronica had dislocated the bone behind her knee and it was refusing to go back in. I was full of useless advice and it was a horrible but brief conversation. Veronica was in a lot of pain and I was unable to help her. There was one small consolation though and that was that Veronica was trapped on her chair in front of her computer.

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.

My grandmother is 87 today and Isaac will be one in a few days.

I successfully avoided getting together with my extended family at Christmas.Today we will all be together for the first time since Mum’s funeral. Combined with the fact that I handed the keys to Mum’s house over to the lawyers on Monday has made this past week very emotional.

Tears are never very far from the surface and my men are tiptoeing around me lest I rip their heads off.

Veronica has been busily disagreeing with a “hate blogger” which has provided me with a much needed distraction from myself. The comments section of that blog is a hoot. Accusations, sweeping assumptions,aspersions and arseholiness are the main themes.

It is all very amusing for about five minutes until you realise that it is real people they are ripping on. I am very proud of Vonnie for standing up for what she believes in and loudly saying that by our silence we are giving these stupid hate bloggers more power. Personally I believe in Karma and I cant be bothered with the small mindedness of chicken liver and her pathetic cronies but I will stand shoulder to shoulder with my daughter and say this crap shouldn’t be tolerated.

David is aghast at the ramming and subsequent sinking of the Ady Gil by the Japanese security ship the Shonnan Maru. The Japanese are killing whales in Australian territorial waters and our government is hoping that by ignoring the problem, it will just go away.

I have been very impressed by my son’s articulate and passionate response to the sinking of the Ady Gil. David would love to join the Sea Shepherd’s crew and be actively involved but the ships are vegan and my son is honest enough to admit that he isn’t quite that committed. Yet.

There is a rally to support  Sea Shepherd at the Abel Tasman Memorial fountain at Salamanca at 11 am on Saturday the 16th of January.David is keen to attend his first environmental/political rally.

I am very proud of both my children for passionately standing up for what they believe in.

Thankyou for the response to my video of Harry and the pigs. Jientje and Barbara have asked me to make some more videos and so I will. What sort of things would the rest of you lovely people like to see?

I have had the camera out a bit this past week and I think that I might have enough decent shots to post a couple of photos later on this week.

Lastly I want to thank you all my dear internets. I really don’t know how I would have gotten through the last six months without your support. Thankyou.