Happy Mothers Day everyone.I am going out to see my daughter Veronica and we will be having scones with jam and cream. I am going to dig out my Great Aunt Joan’s, Royal Doulton tea cups and we will sip cups of tea from proper tea cups.

It will be nice.

I am seriously pushed for time this morning, so without further ado here is this weeks Sunday Selections.

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.

The Photos

There was much talk about the “super moon” on twitter the other night, I couldn’t see that this full moon was any different from any of the other full moons I have seen before. Now I know that this moon was closer to earth, yada yada yada but because I live in the country and don’t suffer from adverse light pollution, I have a wonderful clear view of the night sky every night.

I absolutely adore the full moon but I can’t be bothered dragging out the tripod and taking photos like a proper photographer. I just run around the house snapping away madly freehand, and hoping like hell I don’t trip over anything in the dark.

I get very bored with my own images very quickly, I mean how many photos of the full moon does one woman need? And the moon does end up looking like a speckly peeled orange with all those segments after a while. So I have lots of photos like these ones as well, where I am endlessly fascinated by the patterns the branches make.

I am more interested in the texture of the branches and the circle of light bleeding into the clouds than the actual moon itself. I have just used the moon as a handy source of light.

Anyway enough with the moon, last week we went fishing for a bit and this photo shows young players how not to hold their rod when targeting Tassie Black Bream. David was rolling a smoke and if a bream had taken his bait he would have lost his rod as well as a tooth or two.

I think I have Titler’s block.

The title of my blog post is generally the first half of a sentence, with the opening sentence of the blog post completing the thought that was started in the heading, with the post then following along in a semi-orderly direction.

But not today.

Today I have Titler’s block and so this post will be all over the place, completely without any structure.

It is 12 noon and I have done sweet eff all this morning.

Apart from drive the totally unplanned hour long round trip to get David onto a metro bus because he missed his school bus this morning.

And seeing the suburban bus stop is next to a supermarket, I did a quick ninja shop and bought ingredients for three different meal options for tonights dinner.

Tip for young players. Do not go to the supermarket before breakfast.

I came home with canneloni and couscous, ricotta and red snakes and now that I have had breakfast I don’t feel like cooking a bloody thing.

David read my blog post , “When Magic Kisses and Wiggles Bandaids Don’t Work Anymore.”

He kissed me on the top of my head and told me he loved me, I then pushed my advantage in the mum-needs-a-love stakes and also scored a giant hug and a kiss on the eyebrow for luck.

The proton pump inhibitor (40mg pantoprazole) has taken the edge of David’s nausea so he only feels terribly seedy each morning rather than constantly on the verge of throwing up. So that is a win, sort of. We also came away with lots and lots of Panadol-Osteo, some Celebrex and a small supply of Pramin (10mg Metoclopramide) for when he is really feeling like shit.

The paracetamol seemed to take the edge of David pain levels a tiny bit, but he complained it was making him feel ill so he stopped after 2 days. We still have the big guns of the anti inflammatory Celebrex to keep as breakthrough pain relief when he is having a big flare up.

One of the difficulties in dealing with an incurable, degenerative and rare genetic condition is that the medical profession are always constantly on the back foot and being reactive rather than proactive and it is disheartening to realise that all we can really do is muddle along as best we can.

I don’t like being reactive, I am a doer, I like to be prepared and to have a plan. I am a great believer in preventative strategies and I am sure I was a glorious boy scout in a previous life.

But Ehlers Danlos Syndrome doesn’t allow for plans and preparations. Veronica managed one of her most hideous and painful dislocations while she was sitting down being still. *sigh*

So we are taking each day as it comes and our next visit to the Doctor will be to get David a referral to a psych who specialises in talking with people who are dealing with chronic pain, it would be nice if this psych was also experienced with teenagers but I am not holding my breath.

In the meantime with winter fast approaching we took advantage of a glorious autumn day last weekend to do a spot of fishing down at the river.

There was a time when a magic kiss fixed everything and what magic kisses wouldn’t fix, a wiggles band-aid certainly could. It is a sad day in a mothers life, when she realises that the one sure fire cure in her arsenal, just doesn’t work any more. That the magic has faded from her kisses and that wiggles band aids are made for little chubby fingers, not almost man hands.

I don’t often think of myself as the mother of disabled children, I certainly don’t think of my husband and children as disabled.When I think of disabled children, I think of the stereotypical image of a brain damaged child in a motorised wheelchair.

But I am, the mother of disabled children. My children are broken, betrayed by their broken gene and dislocating joints.

In my broken family Veronica and The Spouse are two of a kind, they both have a strong work ethic and they both treat their disabilities with a nonchalant disdain. They battle furiously on, until they collapse in their various heaps, gathering their breath, marshaling their strength and poking their respective ribs, shoulders and hips back into place.

David and I are of the same ilk, we both coast along doing just enough to pass, whilst also giving of ourselves to all that need a hand. We are the ones with the ready ear and the solutions, the broken naturally gravitate towards us. Or more especially the broken gravitate to my son. I learned a long time ago how to ration myself so that the psychic junkies didn’t drain me dry. This is a skill my son needs to master, but it is also a skill that only comes with growing up.

My son, my youngest child David, will be eighteen next month and somedays he is so broken it hurts me to watch. It is hard enough navigating the minefield of young adulthood with out having to deal with a broken body as well. I often wonder if I am in some sort of denial about the extent of David’s Ehlers Danlos or if it is just that I am so used to my husband and daughter being broken that I don’t think too deeply about it anymore.

My refrain in the mornings as David complains of feeling sick has always been, “You will be fine once you get to school.” As I pushed him into the shower, into the car, onto the school bus, out into his life.

Pushing him to push through himself.

David is in bed as I write this. He is having his first Ehlers Danlos Crash, he has pushed himself for so long that his body has pushed back and said STOP. I have a thick lamb stew on the stove and I am letting my son sleep. We have a Doctors appointment on Monday and then I will begin to push again. This time I will be pushing the Doctors to do what I want. I fought for seven years to find out what was wrong with my girl. Veronica has cleared the path for her father and her brother and armed with the knowledge and the support of my daughter I will try and make things a bit easier this year for my son.

And there is a time to faff about but if you faff about for too long you lose your writing time

Or I do at least.

I write my blog posts in the early morning. Each morning I get up and make a pot of coffee and I sit down at the computer. I check my emails and then I think about writing a blog post.

The critical piece of timing here internet, is the point between thinking about writing a blog post and opening facebook.

If I open facebook, I lose time, anything from 20 minutes to an hour can vanish in the click of a mouse.

I check my son’s status, then my daughters, then I check on you. I smile at the humorous pictures I see and I share stuff that interests me or that I think my friends will enjoy. click faff click faff. tick tock tick tock tick tick TICK TOCK.

Then twitter beckons and I have another choice, click over to my twitter account or log onto the blog.

I use twitter as a news service and If I click through to my account all chances of writing a blog post have flown out the window. I  become distracted and then overloaded mentally by all the goings on in the world. The occupy protests, Syria, feminist issues, causes, humour and stupidity all combine to steal at least another hour.

And look it is 8.20 am and I haven’t written a thing.

The clock is still ticking away, half the day has vanished already, I should be in the studio, eeek.

But I am procrastinating and maybe I should just make a music cd to work to. Something loud and rocky, good cleaning music.

Because the studio is chaotically messy from this months frantic making and I need to give it a good clean before I can glaze the work.

The Fired Up exhibition opens on the 4th of March. The work is half done.

The bisque firing was successful and the work just need to be glazed.

Glazing involves making five or ten litre buckets of glaze, mixing and straining and sieving and pouring.

All very physical work but I can’t concentrate today.

I am procrastinating.

I am procrastinating by writing this post.

I have managed to avoid twitter and facebook this morning apart from a quick check on the kids.

My son goes back to school today. He dropped out of school last year and spent the year sleeping.

His facebook status worries me  All-nighter then rosny tomorrow. Yiew. Pumped to get back into guitaring.

I need to remind myself  that I cant live his life,that I cant make him, that I cant make him be happy.

I cant fix him. My son is broken and I can’t fix him. I can just pass him the glue and hope.

I rang him at 7.08 am this morning and he answered the phone with, “Yes I am awake Mother”.

I wasn’t going to ring but I am too keyed up to let today slip by without making contact. David is an independent student, who does not live at home and he needs to find his own way without me nagging him out of bed and forcing him to go to school.

I am a bundle of nerves, of angsty, worrying nerves. I hope against all hope that David has a good first day at school, I hope his day today will be brilliant and that he will go to school again tomorrow, happily.

I hope, I hope, I hope.

I have had this feeling every first day of every school year of his life. Hoping like mad that he has a great day, knowing that his first day’s experience  will define the year. It seems that I have spent every first day worrying. The difference now is that we know about the Ehlers Danlos Syndrome. We know why David can’t sleep. Why he hurts, why the nausea lasts all day and why the anxiety gnaws at him.

And here I am again pointlessly exercising my mad skills with my 20/20 hindsight. If only I hadn’t sent him to Blah de Blah  high. If only I hadn’t made him stay at the primary school he hated, If only we didn’t live so far away. If only things were easier.

If only mum hadn’t died.

It is hard, internet.

And all I can do, is the best I can do.

I just muddle along, taking each day as it comes and making decisions based on the information I have at hand at the time.

And if wishes were horses I would own a circus.

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.