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.

I would like to start this blog post by thanking you. The words thank you seem so small when I write them down, they don’t really capture the enormity of grateful emotion that swells in my chest every time I receive help from you.

As each email telling me of a donation comes in, I feel an excited *squee* bubbling up and I am so very, very grateful to you.

The section of the internet that I frequent really is filled with lovely, lovely generous people. And due to your help in spreading the word of my shave we are going to be able to help the Leukaemia Foundation help families who are facing the darkest battle of their lives.

Cancer really and truly does suck. It is a terrifying reality to have to face.

It is the little things with cancer that you don’t expect.

I wasn’t prepared for how much I spent on petrol driving to the hospital over and over again, the car seemed to be continually running on empty(as was I) and all other household bills were put on the backburner as the costs of Mum’s cancer came first.

When you live any distance away from the hospital, appointments seem to take up whole days. I don’t think I cooked a meal for my family in the last few months of Mum’s life. I know I certainly didn’t do a scrap of housework.

Small things internet, small things that build up and can cause huge stress in a family.

It is my own experience of cancers destructive impacts upon a family that made me decide to join the Worlds Greatest Shave. I was grumpy with my hair and I saw an ad somewhere for the Leukaemia foundation and BAM just like that I signed up.

Now of course I am shitting myself and trying not to think about the impending haircut, as each time I think about it I start to hyperventilate a little bit.

I am impulsive and I never ever think about the consequences of my actions. I just decide to do stuff. I certainly hadn’t thought about the logistics of actually shaving off my hair until a conversation happened on facebook and I was given a link to this page, Miss Be Shavin’

And before I could say “Roller Derby looks like fun” I had joined up with these girls and the logistics of the shave are all being taken care of for me.

I just wont think about the venue, or the hundreds of people that will be there.

I will do my best Scarlett O”Hara impersonation and think about that tomorrow, internet.

On my birthday Veronica took some photos of my hair for me.

After all that hair modelling I was exhausted and the kidlets and I retired to the couch, with chocolate.

If you would like to support me  and donate a couple of dollars I would be most grateful.

So far internet we have raised Raised: $1,508.00

You can DONATE HERE. *grins*

Wow internet that is a long time.

Well it’s not really a long time if you are a tree or a rock or a giant squid.

BUT it is a long time to have been married.

Today is my anniversary, The Spouse and I have been together for 25 years.

I often flippantly say that I found him on the side of the road and decided to keep him, well that is true, up to a point.

I didn’t really decide to keep “The Spouse” until four years later.

What I don’t say is that I only went out with The Spouse for a few months when I  was seventeen.

“The Spouse” swears that for him, it was love at first sight. He says he just knew that I was the one for him.

At the fickle age of seventeen I just thought he was rather hot and very fuckable. I went out with him for a few months and then dumped him when he started to talk about long term plans.

At the words lets settle down,I went WTF and bolted.

I bumped into Jeff at the pub again when I was 18 or 19 and one look into those eyes of his and I was immediately smitten again. But once again he vowed and declared that I was the only one for him and I was off like a shot.

At the age of 20 I was living a rather torrid life. The share house I was living in was full of crazy people doing crazy people things. I was working night shift in a popular blues nightclub and I wasn’t just burning the candle at both ends, I was putting a blow torch to the middle of the fucker  as well.

Enter “The Spouse” into my life again

Third time must have been the trick because on my 21st birthday I decided that maybe there was some merit to settling down with this bloke and so I jumped onto the back of his motorcycle and we have never looked back.

I like this photo very much, even though I joke that I should have moved the knife block a bit closer.

“The Spouse is often underneath my car fixing it for me.

I was telling him to pose for the camera and we got the giggles.

This is my favourite “Arty” shot of the Spouse.

Hey Jeffrey Foale. I do Love you!

Hello internet.

I spent most of yesterday and part of today in the emergency department of our local hospital with my daughter Veronica and her small son Isaac.

Isaac has a viral infection and we were that worried about him that at 5.00pm we braved a trip into the hospital.

Isaac was finally admitted to the Pediatric ward at 2.30 am.

I then drove slowly home at 3 am this morning being very careful to avoid imaginary large black dogs and kangaroos on the  highway as my tiredness produced some interesting  hallucinations.

This photo taken with my phone camera at about midnight last night sums up all our exhaustion.

This photo says more than I ever could.

I am tired internet, I am slightly stressed and I have a fever and an infection as well.

We have a wedding in five days time.

But.

The plates are in the kiln.

The cake is made.

The sheep is being delivered tomorrow and will be killed tomorrow night.

A spit roast has been organised and I have rustled up some chairs and tables.

We will be testing the livestream tomorrow. I will tweet at you tomorrow so that you can tell us if it works.

I am sure it will all come together and even if we all just stand around in a paddock eating lamb and gravy rolls it will still be a wonderful day.

Because Isaac is now home again and he has eaten a bowl full of sliced peaches.

Otherwise my head might just explode and that would be very fucking messy.

Some people are just arseholes. There is nothing you can do about their inherent arseholiness other than stand by with your mouth agape and wonder where on earth they learned their low life skills.

Australia, the lucky country, the land of the fair go, home of the tall poppy syndrome.

Where if you start to shine a bit brighter than all the other stars out there some lowlife will always come along and decide to start throwing a bit of mud.

anonymously of course

*sigh*

Well,
what can I say. firstly congrats on the wedding, Really, you drug your child at 3 am with panadol, didnt you watch today tonights segment on the effects of medicating our children for a “good” nights sleep, oh thats right you have sold out to ACA and Kellogs for a measly few words on allergy free breakfast. Luckily – you didnt make an “idiot” of yourself.

Selling out? Where on earth has all this talk about selling out come from? Veronica has always had advertising on her blog and has always worked with brands.

Drugging her child? For fucks sake.  Amy was sick. You use paracetamol to reduce fever you idiot. You of all people should know that.

I am seriously grumpy today internet. Mainly because I am 99% certain I know who the anonymous arsehat is and that makes me very sad as well.

I am going to play in the garden today because I need to have my hands in the soil. I need to earth myself so that all the negativity is absorbed by the universe instead of fizzling around inside my head and fucking up my balance. And if you scoff at that as old hippy nonsense well then anonymous that is your loss and I advise you to remember that Mammon is a poor excuse for a  god.

I really should follow my own advice to Veronica when dealing with arseholes, which is to stand a little taller, square your shoulders and be secretly pleased that you chose today to wear your teflon shirt so that the shit these arseholes fling, just slides right off.

But I am having a bit of trouble with that advice right now.

Deadshits.

Some days I miss my mother so much that even writing down the words make my eyes prickle and fill with tears.

There is a heap of stuff I am trying to deal with. On their own, these things don’t have much weight but tie them all together and it feels like I am swimming through mud.

My grand son was officially diagnosed with Autism yesterday. Systems will be put into place for Isaac, autistic specific playgroups will be found and the experts will step in and try to help as best they can.

This is good. This also breaks my heart.

I am trying to write an email to a physiotherapist to tell him that “The Spouse doesn’t want to continue with his appointment because it is obvious the Physio knows nothing about Ehlers Danlos Syndrome and in The Spouse’s words is “completely fucking useless”  How do I say that? How do I say “Listen son, you need to bloody well do a bit of research on EDS before we go any further”.

I worry that he will break my husband or my daughter with inappropriate exercises designed for non-bendy people and I also wonder if I can be bothered dealing with his air of professional superiority because he is a trained medical professional you know. ( insert sarcasm font)

I worry that my grand daughter who has an unofficial diagnosis of Aspergers as well as EDS will fall through the cracks. I worry that the paediatrician in charge of her care is another one who knows absolutely nothing about EDS and is more than happy to think about his golf handicap instead of my grand daughters care.

My son is living in town with his friend and I worry that he will decide to sleep all day, rather than go to his classes. My mantra when the children were growing up was, “your choices, your consequences”.

It is hard not to want to live their lives for them.

I want to shake my son and say look, look at all the mistakes I made, don’t do it, don’t make my mistakes. All I can do now is watch and hope and wish that mum was here to gently laugh at me.

I am watching a very clever liar, weave a complicated web of deceit and I am in two minds whether to call them out and wear the fall out or just wait and see what happens.

I went to Mona yesterday and once again I was drawn to this fabulous sculpture PXIII by Belgian artist Berlinde de Bruyckere

This sculpture makes my soul sing. The artist says this work is about loneliness and I can relate to that.

I think that I am becoming invisible, the older that I get.

I interacted with Australian artist Greg Taylor’s art work titled  My Beautiful Chair, featuring a couch, a lamp, a rug and Philip Nitschke’s suicide machine. As I watched the prompts on the computer I thought about my Mum and how peaceful her death was. I remembered what it felt like to stroke my mother’s dead hands and the beautiful ivory colour of her skin.

It was a very introspective three minutes.

And met a plethora of amazing bloggers.

I have spent the morning reading blog posts about the conference, looking at photos, reading the tweets and sitting here trying to work out how to write a post that actually captures the sense of community that was so strong through out the conference.

The dynamics of my twitter stream and google reader are changed forever now.

I am able to put real faces and real voices to my online friends avatars and I am very very happy that I was a part of this wonderful event.

But the main thought in my head at the moment is how do I write about all the amazing people I met without overdosing on adjectives?

How do I write coherently about the cold, cold anger that I am feeling at the way that my daughter was unceremoniously dumped from the the final keynote speakers selection with less than five minutes notice due to so called time constraints, without admitting that even a public apology will not calm this Mother’s rage.

So I wont, I will write instead about the phone call I received at 1.45 am this morning that has left me gritty eyed from lack of sleep.

The words

Hi Mum, I am at the hospital can you ring me back, click .

Turned my soul to ice and my fingers to jelly

It seemed to take an eternity as I searched for my mobile phone so that I could find Davids number in my contacts. The fucking phone was flat and the charger was in my suitcase so it was a few minutes before I could call my boy back to see what was wrong.

The words

It’s okay Mum, it’s not me, I am fine, allowed me to breathe again.

My teenage son had been staying in town with his friends while I was in Sydney and one of the  girls had wandered off and had slashed her arms so deeply with a razor blade that she needed an ambulance.

David told me quietly that he had carried his friend up the hill from the oval and waited with her for the ambulance. He told me that he was in the hospital without any money, totally stressed, covered in her blood and desperate for a cigarette.

As we talked I could feel my son calming down and together we worked out a plan to get him back to his friends house.

My son is so like me, he is a people person

But my son gathers the broken to him and I worry about my boy.

This is the third time in less than 2 months that one of Davids friends has attempted suicide.

And I wish I could protect him, I wish I could protect both of my children. I wish I could magically make their hurts vanish as easily as I did when they were small when something as simple as a wiggles bandaid was all it took to make them better.

I look at both my children and I am incredibly proud of the pair of them.

I watched Veronica act with class and grace and style on the weekend.

I listened to my son this morning tell me that he thinks he needs to go and do a first aid course.

And I look at my husband as he grumbles about the mess I have already made in the short time I have been home and I know that I am pleased I went away but I am even more pleased to be home.

My daughter Veronica told me last night that her partner Nathan proposed to her yesterday.

Veronica accepted Nathan’s proposal of marriage.

I never actually gave their relationship much thought before, it didn’t bother me that Von and Nate weren’t married.

But do you know what my dear internetz?

Ever since Veronica told me the good news, I have had this excited feeling in the pit of my stomach and I keep on having a quiet little giggle.

Squee.

My little girl is getting married.

I am thrilled to bits.

I have that line stuck in my head now but I cant remember the song it is from. Old age, people, old age.

Anyway the point of this post is to tell you that I will be talking on the radio this Friday morning. My daughter Veronica rang me yesterday to let me know that we will both be talking to ABC local radio presenter Ryk Goddard about our experiences as Mothers.

I think the point of the interview is to compare the differences with two generations of Mothers.

There aren’t the glaring differences with Veronica and my experiences of motherhood as there was between My mother and myself. Things had changed radically from the 60s style of motherhood to the 80s version of motherhood but not much has changed really from the 80s to now.

I think you could say that with a lot of aspects of womanhood as well. There was the great fight for womens rights in the 60s and 70s but by the time I was a grown woman in the mid eighties I took all my freedoms for granted and I was spoiled for choice. I had easy access to birth control, I could go to any university I wanted to, I had plenty of job offers on the table and I was about to start a horticultural apprenticeship, when I chucked it all in to become a stay at home mum.

Once I held my new baby in my arms I chose to be a stay at home mum and choosing to be that stay at home mum was a lot more difficult than I expected it to be.

Financially it was a nightmare. The Spouse was a deckhand at the time, a third generation fisherman and it was always feast or famine living with a fisherman.

He was at sea when Veronica was born and managed to get home to meet his daughter when she was three days old. He had gone back to sea again before we had even left the hospital to go home on day five.

When Veronica was twelve months old our rental house was sold and we moved away from the city to live closer to the block of land my Mum had given me. We ended up living in a converted bus in Mum’s back yard for eighteen months, luckily it was a very big backyard or Mum and I would have driven each other crazy.

I remember having an epiphany one day down at the wharf, holding my small daughter in my arms and us both waving to The Spouse as he sailed away. The feeling I got as I watched these small men in this small boat venture out onto this huge grey ocean was one of impending doom. Veronica and I waved until we couldn’t see that tiny speck anymore and then we did what countless generations of fishermens families had done before ue, we went home to wait.

I made The Spouse chuck his job in when he returned home. I argued passionately that the money wasn’t worth it for the risks he was taking and that he needed to stay on dry land or else. The Spouse wasnt prepared to risk the “or else” and he stayed home with me. Within a month of  “The Spouse stopping work we had moved the bus up to our own land, funny how living in your Mother in law’s backyard quickly loses its charm when you are actually there every day. It was a hard transition for a man with salt in his veins to make and one day I am going to make a large sculpture of Poseidon and have him here looking down the valley shaking his trident angrily at the circumstances that left the sea god marooned so far inland.

The skipper hit a rock, off South Cape on the next trip with a green crew and they were unable to save the boat.  The crew were fine but it proved my point and The Spouse has never returned to the sea.

So here I am sitting at the computer twenty odd years later reminiscing and trying to work out what on earth I am going to talk about on the radio. I did things so differently from my peers. We eschewed the mortgage and the 9-5 lifestyle in favour of an alternative lifestyle where we built our house room by room out of recycled materials. This wasn’t done to fit in with some utopian dream of ours, it was down to simple necessity. I had chosen to be a full time mum and The Spouse found it very difficult to hold down a job that wasn’t at sea.

We were also young and full of beans and had all the time in the world.

I think that on Friday morning I will do what I normally do, I will just wing it, I will work it out as I go along, I will follow my daughter’s lead and I will hope like hell that I dont babble.

It will be just like everything else in my life.

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.