I am far from okay but there isn’t a whole lot than anyone can do to make me better.

I also don’t see that anyone other than my very closest friend, asking me if I am okay are going to get a straight answer.

I will just lie and grin and say of course I am okay and then change the subject.

I am a brilliant actress.

RUOK is a wonderful concept but today it is giving me the shits.

Now before you start to get all upset with me and decide to lecture me about the ideas behing RUOK  and all that jazz.

This post is about me. Not about you.

If you are going to get upset with me, just piss off quickly and don’t give me the shits ok.

I am stabby enough as it is.

I am not okay today.

Tomorow I will be better, maybe.

The day my mother told me she had a black spot in her lung was one of those defining points in my life.

Everything now is measured in befores and afters.

The day my daughter was diagnosed with Ehlers Danlos Syndrome was another defining point

As was the diagnosis of her two chilfdren with EDS and their subsequent diagnosis of Aspergers and Autism.

My husband has Ehlers Danlos Syndrome.

My son has Ehlers Danlos Syndrome and suffers from anxiety.

These things are not okay.

These diagnosis dont bring sunshine and fucking roses into my life.

They bring despair.

Great fucking bucket loads of despair.

I am grieving.

I am grieving hard.

Lung cancer shouldnt have killed my Mother she was a non fucking smoker for fucksakes

My daughter shouldn’t have to struggle to brush her own hair.

She is 22 years old and can barely walk from one room to another.

Simply taking her children to the park exhausts her.

This sucks.

My son is 17 and is proving he is  grown up by rebelling against everthing we have taught him.

He has moved out of home.

He has dropped out of year eleven.

He was stabbed behind the ear in a brawl. The wound was superficial. My fear manifested as anger.

And I gave my son another reason to push me away.

He has unfriended me on facebook because I pulled him up privately on a thuggish racist status update.

I am desperately afraid that his anxiety will get the better of him.

I watched a police car driving up my quiet country road the other day and I was convinced it was coming here to deliver me bad news.

I started to cry with relief when it drove on by.

I know that this stage will pass but it doesnt make it any easier.

I share snippets of my life here on this blog.

Tiny slices.

I was told that I should have a professional ceramics blog and leave all the personal rubbish out of it if I wanted to be taken seriously as an artist.

But I cant be bothered starting a new blog  full of art wank and words and ideas that belong in a dusty book somewhere.

I use this blog to think out loud, to order my thoughts, my ceramics and my life are intertwined, as is the blog.

They all are a part of who I am.

Maybe RUOK has worked anyway

As I have cried and written my way through the shit that is in my head.

I am not okay today.

But I am feeling a tiny bit better, thank you for listening to me internet.

I will be okay tomorrow.

Because really what else is there to do but

Just keep swimming.

I have never been one to sit quietly and accept things on face value. When my daughter began to get very ill in her early teenage years with a strange sort of flu like virus that lingered for weeks at a time I searched for answers. What was this horrible virus that Veronica never quite recovered from?

I wanted to know why my 14 year old daughter had a headache that would not go away? Why she was  constantly nauseous and at one stage of her illness only able to eat plain pasta, tomatoes and apples. Why was my girl totally exhausted and yet unable to sleep? Why were all her joints aching? What caused her to nearly pass out every time she stood up too suddenly, what caused the heart palpitations and the unexplained bruises? Why did a simple cold always turn into a chest infection, why was she quick to catch everything and slow to heal? Why was my daughter in pain?

I needed to know why this was happening to my first born child and so I pushed for answers. My hopes would rise with each new specialist we saw only to be shattered again when the results of Veronica’s blood tests came back as normal, except for one little marker that was always a bit higher.

When your child is sick finding out why does become like an obsession. A sick child takes a hell of a lot of energy and it is also a very isolating experience for a mother. I couldn’t really talk about how worried I was about Veronica with my general acquaintances because that sort of conversation very quickly becomes boring. My only allies were my mother and my best friend Tanya, who has lupus.

Mum and Tanya held my hand, soothed my fears and offered their ears. They would ring me with news of  rare conditions with symptoms that sounded similar to Veronica’s and encourage me to go to the Doctor to get this and that checked out. They were there to pick me up when I was at my lowest and I didn’t feel quite so alone with their support.

At the end of two years of illness we had exhausted all our medical options. I had been told by various doctors some kindly, some brusque and some indifferent that Veronica was faking, that she had a mystery virus, that it was probably worms, growing pains, sinus, psychological issues, anorexia and the list goes on and on. One doctor was very interested in her relationship with her father and another doctor was openly disgusted that I was so stupid as to allow this slip of a girl to waste everybody’s valuable time.

We were given a diagnosis of Chronic fatigue syndrome and told to get on with out lives and that Veronica would probably grow out of it.

All through this, The Spouse tried to be supportive but he is grumpy at his best and downright horrible at his worst. The Spouse was sympathetic to Veronica’s pain, as he is in pain all the time. He was sympathetic to Veronica’s nausea, as he always feels like crap himself.  His remedy was for Veronica to stop feeling sorry for herself and to push on through. He growled at me, that I was spoiling her when I let her stay home from school when she was having a bad day and his common refrain was that Veronica had pulled the wool over my eyes in order to have a sickie.

The standard conversation that Mum and I had was that if Veronica had a broken leg, her father would wait on her hand and foot, he would build some amazing contraption to make her incapacitation easier and nothing would be too much trouble at all for his pumkin, but because Veronica had an invisible illness he wasn’t very sympathetic and the atmosphere was tense. I am sure that he thought that chronic fatigue syndrome was just another name for lazybones.

Veronica and I pieced together a family history of similar unexplained ailments on her fathers side of the family. There wasn’t anything that we could really put our fingers on apart from, The Spouse’s sister who also had been told she had chronic fatigue syndrome and his mother who had some of Veronica’s symptoms as well. It was hard with a sick child and I was never satisfied with Veronica’s diagnosis of Chronic fatigue syndrome.

In 2007 I started blogging and one of the first blogs I subscribed to was Benefit Scrounging Scum, a British writer who had a rare illness called Ehlers Danlos Syndrome. Over the course of my first year of blogging Bendy girl and I became friends and she suggested that Veronica might have Ehlers Danlos Syndrome as well. I was horrified at the thought that Veronica might have EDS as the illness looked awful and when Veronica also said that she thought that she might have EDS, I was very quick to dismiss her with a firm no, no you don’t have that at all, because quite frankly the thought of Ehlers Danlos Syndrome frightened the shit out of me.

Of course Veronica does have Ehlers Danlos Syndrome and this was confirmed by a visit to the geneticist.

When Veronica received her formal diagnosis from the geneticist, The Spouse’s initial reaction was that the EDS must have come from me as I had a recurring dislocation of my knee from 1993 -1998 and that was the end of it as far as he was concerned. If I tried to talk about the EDS coming from his side of the family I was angrily dismissed and told to stop nagging him. The Spouse did not want to hear about EDS and it took a month or so before he could begin to accept that Veronica’s EDS had possibly come from him.

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident. 

Twelve months after Veronica’s diagnosis, The Spouse and David were also diagnosed with Ehlers Danlos Syndrome.

It has been a long journey.

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.

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.

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.

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.

When my children were small I dreaded going to the local primary school. I used to have to take deep breaths as I walked through the school gates, past the icy stares of the reebok squad and the condescending nods of the glitterati girls. It really felt like I was walking through a gauntlet of disdain and disapproval because I was the one who lived an alternate lifestyle.

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.

I have this photo of Mum and Amy as my screensaver.

I look at this photo every day but I cant bring myself to really have a proper look. If I look properly at this photo and look into my Mother’s eyes I feel myself begin to get all teary. So I quickly look away or I focus on my grand daughter’s face instead.

The enormity of the hole that Mum has left in our lives is only just now starting to become apparent.

Thankfully I have stopped crying every time I think of Mum,though I am crying a little bit as I write this because trying to articulate the depth of my loss makes me examine it in more detail than I want to.

Veronica now has two horses and she reminds me so much of Mum, in that she never does things by halves. Mum was an accomplished and knowledgeable horsewoman and watching my daughter with her two horses I am confident that it wont be long before Veronica is the same.

I don’t know where I am going with this post at all. I only know that today the sky is blue and it promises to be a lovely day and for that I am thankful.

David has been formally diagnosed by the geneticist as having Classical EDS with a score of 7 on the Beighton scale. ( a non bendy person might score a 1 if they could touch the floor with the flat of their hands) I am not very flexible at all so my score would be a zero.

The cardiologist has decided that a non-interventionist approach is best for David. Yay. I am all for non intervention. We go back to see the cardiologist in late January 2010. The  irregularities with Dave’s heart mean that he will have to take extra care of himself and always be aware of the “heart healthy options” which is a big call for a fifteen year old boy who, like his peers thinks that he is ten foot tall and bullet proof.

My mouth is all healed up as is my self esteem. I can wear my teeth all day now without any major discomfort. I have plonked my teeth into the same category that shoes and bras belong, annoyances that must be worn outside the home for the sake of vanity. The first thing I do when I walk in the door when I get home is kick off my shoes, take off my bra and rip out my falsies. aaah.

I have been in touch with the trustees of a local nature reserve and they were quite excited about my idea of a sculpture trail. I was so nervous before I rang them,that I had to wander around the house psyching myself up to make the call. All the angst was for nothing and I was incredibly relieved and excited by the end of the phone call. I am meeting up with the trustees early next February on site. All I need to do is submit a written proposal to the committee and once that is approved I can begin working towards a major interactive exhibition in a lovely bush setting in February 2011. YAY.

I am also excited about our upcoming exhibition Perspectives of  Fire and as soon as the invitations have been printed I will publish one here and then invite you all to the show.

I am working on some different bowls at the moment and Chris Jordan’s photos of the dead albatross chicks have really touched me. I am going to make a dead albatross bowl later on today and I will publish photos of it as a work in progress early next week.

Here are some bowls I made last week. These bowls are the sort of thing that I am thinking of making for the outdoor exhibition. If you mouse over the photos you can read the descriptions of what I have done.

I am off outside now to enjoy the sunshine.

Gluten is evil. Well in regards to my granddaughter Amy, gluten is certainly the enemy.

I will start at the beginning for those of you out there amongst the interwebs not able to read my mind.

Veronica was reading a blog post where the writer was describing her daughter’s behavioural changes when she ate anything with wheat in it.Tantrums, mood swings, manic behaviour and meltdowns.Yet again the blogosphere provided a light-bulb moment for Veronica as the writer could have been describing Amy.

Veronica rang me and told me that she was thinking of eliminating all wheat from Amy’s diet. During the course of our phone conversation, I pulled out half the contents of my pantry and we examined the ingredients. Massel stock cubes are gluten free yay, but homebrand french onion soup is chockers full of the stuff. Spring Gully worcestershire sauce is good, Holbrooks is bad and so it went on.

I found gluten in some very unexpected places. There is wheat in marshmallows. The sneaky fuckers! I was going to make rocky road for Amy’s birthday. Gah!

Fast forward a few gluten free days.

Yesterday Amy stayed with me for a few hours and the change in my granddaughter is very obvious. Amy was much, much calmer. We still did all the things that we normally do but we did them much, much, much slower.

Normally Amy has me tearing about the place at breakneck speed. Feed the fish.Look in the cupboards. Check the chooks.Collect the eggs. Cook the eggs. Throw the ball for Harry.Play in the dirt. Look for tadpoles. Eat the beans in the garden. See Poppy. Run in circles. Come on Nanny chase Amy! etcetera, etcetera, ad infinitum.

Generally after spending a few hours with Amy I am exhausted, happy that we had fun together but totally exhausted. Yesterday after I waved goodbye to my granddaughter I compared notes with The Spouse and we both agreed that WOW, there was a marked difference in Amy’s behaviour. And double Wow I also,wasn’t completely knackered and in desperate need of a nanna nap. *cue applause.*

The most exciting behavioural improvement from my perspective, was that Amy allowed me to correct her speech. Previously when I  would correct her speech,Amy would sometimes listen and sometimes not. Yesterday she not only listened to me but she practiced her pronunciation with me, until she had the tricky word down pat. I am thrilled to bits.

Gluten is now the enemy.It also seems that there is a link between Ehlers Danlos and food allergies or intolerences. *sigh*

Also whilst we are on food related issues, my friend Barbara has just discovered her 22 month old son is allergic to peanuts.

Our issues with gluten aren’t life threatening and the changes needed are fairly easy to implement. Gluten wont send my Grand Daughter into anaphalactic shock it just sends her into meltdown mode, but it does mean a re-think on the foods we eat and it looks like  I am going to have to add a whole lot of new sites to my reader.

So my lovelies that was my weekend, How was yours?

If I am honest with myself, I will admit that Ehlers Danlos Syndrome frightens the shit out of me. I try not to think too deeply about the long term prospects this disorder has for my children and my grandchildren. I am generally an optimist who doesn’t belive in worrying about things beyond my control.

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.