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.

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.

Your friends either suggest lithium or nod their heads and smile.

This is The Mountain that is the backdrop to the city of Hobart. I grew up under the shadow of The Mountain and one of the hardest things about moving inland was not being able to see the changing moods of The Mountain every day.  

I haven’t been up the mountain by myself for a long time. As a young teenager I used to ride my horse all over the mountain, from Lenah Valley to Fern tree and back again. As an older teenager we used to drive up the mountain and light cooking fires with the wood provided in the huts. We would drink cheap wine and try to count the lights of the city below, before turning our attentions to more serious teenage concerns.

I have been feeling restless lately with a wistful yearning in my soul for something. The practical side of my nature ignores the fanciful and mockingly whispers that a midlife crisis isn’t a good look. Whilst a small part of me feels like crying out, “Can you see me? Can you tell me that I am not invisible?” I push the thought of any sort of crisis away and ponder instead what it means to be 45 and overweight in a society that worships at the altar of anorexic youth.

I am teetering here on the precipice of my next great adventure and as I spread my wings ready to leap, I am filled with an unbearable sadness that my mother isn’t here to help me on my way.

Mum would tell me that it is normal to feel like this at 45. That it is normal to have quiet moments where you feel old and ugly, withered and useless. That the drumming I hear in my ears is my biological clock banging away erratically and that I need to get my shit together and just ride it out and to remember that I am only invisible if I choose to be.

My grief has settled into a cycle, in tune with my own lunar cycle. The grumpy irritability of PMS has been mostly replaced by a week of tears and longing and introspection,which is annoying as I would much rather slam a door in anger and be done with the shitty mood, than reach for a box of tissues and cry like a child for my mother.

On a whim I drove up the mountain and had a good talk with the stones. I let their ancient energy wash over me and I opened my mind to who I am and what I do.

The stones told me that it is okay to feel old as long as I don’t act old. To remember who I am and where I come from and to not lose sight of where I am going. To remember the ley lines and to feel the power of the earth through my bare toes. I think that is half the problem, I have been wearing shoes for too much of this year and I am losing touch with that energy that only comes from walking barefoot in the garden.

I bought a small stone down from the mountain with me and I think it will make nice marks in the clay. I met a twitter friend the other day who gave me some bones to use as tools, in return I am going to make her a ceramic altar to hold her offerings from the sea.

This feels good.

When I just do what I am supposed to do without thinking too deeply, when I let the clay guide me and I rest in that sweet spot, that silent intuitive space, the work just flows and I feel complete.

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.

The past few weeks have been incredibly hectic here at the frogpondsrock household. The Spouse spent 5 days in hospital with blood poisoning, Veronica had a birthday, Amy has been eating gluten, Isaac has been having meltdowns, David has been acting like a 16 year old, I have been crabby, the dog vomited on my bed, some cows wandered through the property nomming on my fruit trees, the cat vomited behind the woodheater,twice, two hens are broody on well hidden secret nests full of infertile eggs, I miss my Mum dreadfully and to top it all off, I have put on more weight.

In between all the mad dashing about like a headless chicken, I have managed to grab a few minutes to catch my breath and do a few things for myself. I submitted these images as part of my application for the inaugural Vitrify Alcorso Ceramic Award 2011.

I also have entered these three dragon eggs in the Cast Members Exhibition, which opens next Friday,  6pm at the CAST Gallery 27  Tasma street North Hobart.

I have been trying to photograph the European Gold Finches that have been eating the zillions of aphids in the honeysuckle, without scaring them away and that has been a bit tricky, as these little birds are super shy and fly off at the first sign of movement.

The other evening The Spouse took me outside to show me something in the front yard.

We had cows in the front yard, two of them with calves at foot had just wandered in off the road.

I didn’t mind at first as I have plenty of grass at the moment and the more they ate the less The Spouse has to mow. It didn’t take long before the cows decided that the new growth on my fruit trees was more to their liking and David spent the next two hours in the drizzle chasing the rotten things away from my fruit trees while we tried to find their owners.

Harry the dog wasn’t impressed at being locked inside as the arrival of a small herd of cows reminded him that his father was a blue heeler and all he wanted to do was bite the cows on the nose and then nip round the back and have a go at their heels.Eventually we tracked down their very grateful owners who came up and took their cows home again.

Now that the weather is warming up a bit I like to have the doors open but there is one downside to an open front door. The downside being this very old chicken likes to come inside and sit up on the couch. I was trying to take a photo of her on the couch when The Spouse came inside and growled at me for taking photos when I should have been shooing chickens off the furniture and scared her away, here she is very casually making her way back out the front door.

I bought some more happy socks when I was in Melbourne. I started to wear happy, stripey socks when Mum was first diagnosed with Lung cancer. On the days when I don’t want to get out of bed I put on my happy socks and smile to myself as I think of my Mum saying pull your socks up girl.

And a couple more photos for luck.

]]> http://frogpondsrock.com/2010/11/the-week-that-was/feed/ 18 http://frogpondsrock.com/2010/11/a-weekend-in-melbourne-2/ http://frogpondsrock.com/2010/11/a-weekend-in-melbourne-2/#comments Fri, 05 Nov 2010 20:23:42 +0000 frogpondsrock http://frogpondsrock.com/?p=5213

Here you go my lovelies, some photos from our first day in Melbourne. This is just a tiny part of what I saw yesterday.

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.

Though I also don’t think that they are horrible photos either. I went for a walk this morning and took some photos. I was fascinated by this piece of roadkill. This was a wallaby. Now it is a series of photos.

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

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

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

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

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

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

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

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

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