Family

Hello Internet, I am home.

by frogpondsrock on November 11, 2010

in arseholiness,blogging,Ehlers Danlos Syndrome,Family,real life

Four days in Melbourne is only just enough time to give you a tiny taste of all that wonderful city has to offer. It was a whirlwind visit and I managed to get blisters on the balls of my feet from all the unaccustomed walking on hard city footpaths.

On the Friday afternoon we walked from our motel in North Melbourne into the city via the Vic markets. A quick tour on the city circle tram helped me to get my bearings and I happily absorbed the sights and sounds of a large city, late on a Friday afternoon. We wandered through the busy lane ways which were covered in street art and I narrowly avoided being shat on by a city pigeon as I was photographing the skyline from within a lane way. We jumped on a tram and headed out to Lygon street to finish off our day with ice cream.

On the Saturday we went for Yum Cha in Chinatown and that was a thoroughly wonderful experience. Thanks to Hazel for her recommendation. The trolleys of  food came out at a cracking pace and we happily sampled everything, though in hindsight the gelatinous pigs trotters were a bit of a mistake. Full of delicious food we waddled off to spend the rest of the afternoon at the Vic Markets. Once the market had closed down for the day we tiredly made our way back to the motel where the kids would have happily stayed but I had plans and they didn’t involve spending much time in our rooms. So I dragged them back into the city and photographed David’s reflection as he caught his breath.

After much dithering and debating I pulled rank and we jumped on a tram and headed off to St Kilda. The teenagers faces lit up when they saw this and all of a sudden the atmosphere changed and they spent the rest of the evening being spun and twirled and catapulted on various rides, with the big dipper getting the most attention.

Sunday saw the teenagers head off to the zoo while I met a friend for lunch in Brunswick street. We all headed back to St Kilda for cake in Acland street and hamburgers at Greasy Joe’s.

Finally on Monday we made it to the National Gallery of Victoria, yay. I had been trying to get to the NGV all weekend but we kept on running out of  time.

As the kids were lying on the floor under the stained glass ceiling, I received a call from The Spouse telling me that he thought he needed to see a doctor. Alarm bells started to ring as The Spouse never willingly goes to the doctor. As I listened to my husband’s rambling and confused description of his infected hand I knew the situation was urgent. I immediately began to organise his admission into hospital by remote control whilst trying to admire a Picasso. The spouse was suffering from blood poisoning and I was hundreds of miles away ack.

Due to his Ehlers Danlos Syndrome, The Spouse’s immune system is a bit wonky and when he gets sick, he gets VERY sick, VERY quickly. My son in law drove The Spouse into hospital and Veronica rang ahead  to appraise the triage nurse of all the details of his Ehlers Danlos and The Spouse was in a ward hooked up to intravenous antibiotics within a few hours.

So I arrived home from Melbourne, late on Monday to The Spouse in hospital and Veronica’s blog under siege from a pair of anonymous multinamed nutters.

This pair of repetitive bores are giving me a headache and my inbox is full to overflowing with their crap aimed at my daughter. Their totally nutty rants aren’t just contained to Veronica’s blog though, so please don’t comment here if you don’t want them over at your blog tromping all through your comment sections as well.

I am tired and a bit cranky as last night there was also a brief but fierce thunderstorm which flooded David’s bedroom, the front verandah and the laundry area outside where I store all my clay and glaze materials.

I have a zillion photos that I will process and publish as soon as I can catch my breath.

I will finish up with a little reminder to Veronica’s nutty commenters, before you comment here with more of your silliness you would do well to read my comment policy.

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All muddled up.

by frogpondsrock on October 16, 2010

in Amy,Aspergers,ceramics,David,Ehlers Danlos Syndrome,Family,Grief,headfuck,Isaac,Sadness,Veronica

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.

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World Party and the Oatlands Spring Festival.

by frogpondsrock on October 14, 2010

in ceramics,Family,food,friendship,Fun,Hope,social justice

This Saturday the World Party will be held at the Hobart Town Hall. The World Party was thought up by Stephen Estcourt and he says,

” World Party is being held in a measure in memory of Zhang Tina Yu, a young Chinese student undertaking an accounting degree at UTAS, who was murdered in New Town on 25 June 2009. Whilst quietly remembering Tina however, the event is designed to offset the isolation and fear that members of the International Student Community can feel whilst living in Tasmania and to highlight that this should not be the case.”

I think that the World Party is a wonderful chance for ordinary Tasmanians to show the international community that we aren’t a bunch of racist bogans and that the vast majority of Tasmanians welcome people from all walks of life.

So that is where Veronica and I will be on Saturday.

Sunday is the Spring Festival at Oatlands and apparently it is a great family day out as well. I will be helping fellow ceramicist Lisa Rudd and members of the community make a ceramic mural.

It is going to be heaps of fun.


So if you would like to sample a variety of food from all over the world and listen to great music come along to the Town Hall on Saturday.

If you would like to play in the mud with me, come along to Oatlands on Sunday and we will have a blast.

That is my weekend organised my lovelies, What are you doing?

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One step at a time.

by frogpondsrock on September 8, 2010

in ceramics,Ehlers Danlos Syndrome,Family

Slowly, slowly, inch by inch the construction of my studio is starting to happen. I am not used to sub-contracting out any building work as “The Spouse” is my builder. Together we have been owner-builders for the past twenty odd years but as “The Spouse” gets progressively more broken and some days can barely manage to stand without pain, it was time to call in some outside workers.

The plans for my studio were approved by the council in May and now it is September and work is only just starting to happen. Patience isn’t one of my strong points and the frustration of not being able to do some serious work has been making me a tad gloomy.

But!!! Now that work has started I am hoping that with everything crossed, fingers, toes, etc that I might be in my studio by Christmas.

This is the site, it is nearly ready for the concreter to come up and work his magic.

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It is the now, that is difficult.

by frogpondsrock on August 19, 2010

in Amy,Family,Grief,Hope,Love and Loss

As humans we like to judge. We apply our own experiences and moral compass to situations and make snap judgements.

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.

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