Brand new day.


I was down the street yesterday and there was an old woman and her son (?) he was about 40 and in an electric chair just like Don’s was. He looked as if he had Muscular Dystrophy or MS or something. Intelligent eyes above a severely twisted body. She was giving him his lunch, and it took ages for him to be able to swallow…each swallow was an effort. She was in no hurry. It was all calm and quite beautiful in its own way. You could see the love between them. Then he had a drink and almost couldn’t catch his breath. She was helpful but not panicky . It made me cry and I had to leave. People have no idea of the love that grows like this. Life is more precious because it can go at any time, any day. And no doubt people assume as friends of ours did assume that it was all “suffering” when I was not. We had so much fun and no doubt this pair did also.




A person I know here wrote a letter to the editor in support of our cause, after the Medical Anon letter. She was too late to have it printed but she gave it to me anyway. One paragraph was just so beautiful. I had not realised that people assumed our lives must be ones of suffering but obviously people did. This is what she wrote,


"Anyone who has visited the Mackay home would have seen on walls and dressers, a living testament of the loving family life the Mackay's shared - letters, funny drawings, handwritten poems by the children, photographs of special occasions, the dressing up games and plays they put on, and family gatherings. Dozens of them all so clearly showing a family at peace with themselves and so creative in having fun despite Don's Quadriplegia. The loving bonds between them and the strength and supportiveness of that family was a revelation to me and would be to anonymous too I imagine. I had always thought that a tragedy like Don's accident and subsequent Quadriplegia could only lead to a life of suffering. Now I see how strongly it can unite a family. Don was the wise elder of the clan with still a bit of the larrikin in him. His life was of great value... "




I felt so humbled when I read this, but what really surprised me was that people thought we must have suffering sorts of lives. This thought never occurred to me in the 25 years of Don's injury.





And the funny thing is that when you or a family member has a severe disability its sort of as if you become public property... in that people make assumptions about how it must be in the privacy of your home, when I know with my few married couple acquaintances the thought has never really occurred to me. I may have thought that he or she was a bit of a mongrel bastard or something and I wouldn't want to be married to them, but the inner workings of their lives never crossed my mind.




Our complete lack of privacy rankled us both... but it was something we had to accept, as it was impossible for us to exist without outside nursing help. The cost of staying sane for me, met I had to accept that bit of nursing care which got Don up in the morning while I had a bit of quiet time.




At times it felt like we were living in a fishbowl, having to accept that nurses we employed, came to the house for two hours each morning and that they would bring all their emotional shit with them and lay it about our shoulders before many people had even gotten out of bed. Poor Don would be trapped in the shower while they rattled on about their aches and pains, about their kids problems ect etc... and in the middle of this I would hear his quiet voice talking to them and telling them good things as almost a sort of older brother...




He would come out and look at me sometimes exhausted already from their shit... cross his eyes and pull faces that they couldn't see but I could...




It just all came to me watching that mum and son or whatever... I also shouldn't assume what they are to each other... but I can assume about the great love between them because it was as visible as if they were tied together with a golden cord.




It is morning now again. The nights are too long these days. The angel of the morning has strobed its light amongst the dark tree tops and I know I will be okay again. Its a one day at a time thing for me.




I had some really bad news yesterday from the Health Care Complaints Commission which I may post about some time or not...I also had a very disturbing email from my youngest sister in New Zealand, who couldn't be bothered returning my calls, but could take the time to email to me something which obviously she did not have the courage to say to me. I will no doubt be dealing with the consequences of her onslaught today. She's the family's "golden child" still at 45. I used to be so close to her once. Its still worth saving but I am not in the frame of mind to do to much about it right now...just flat out getting through these days.

A gift from my sister

My sister gave me a lovely gift when she left. She always finds something for me each time she visits here. She does this after being here for a few days and sees things she would like me to have in my kitchen which I would never think of buying for myself.

This time it was a set of dessert bowls...we are not a dessert type family but the bowls are lovely, very 1950's and the Kookaburrs loved eating out of them.

My eldest sister is generous where many are not and she can't afford to be generous. Sometimes it is those who have so little who give proportionally so much more. I wish she wouldn't really but it would be hurtful to stop her.

EC has tagged me...
List 5 things in my bag:
Bach Flower Rescue remedy Spray, Headache tablets, small book of family photos, One brush and many combs, my purse which spews small change when I open it.

List 5 favorite things in my room:
My books, ( I love my books ahhha!); A horseshoe shaped wooden desk which has my treasures in it; A pair of glasses worn by my maternal great grand mother born in the 1850’s; A mother of pearl hand mirror used by my maternal grandmother – I look into it at times and imagine her looking into it, and then my own mum and now me and some favourite photos.

List 5 things I've always wanted to do:
Lob a bag of fresh cow shit at all politicians, just to make them smell better.
Have cups of tea bought to me as I lay on pillows out in the winter sun.
Travel back to where my own mum and dad were buried and not tell the rellies who live there.
Be able to live over a certain day back 12 Jan 1982 when I could have easily stopped Don from going to work.
Have four or five kids… Happy with our two but would have loved more. I loved being just a mum more than anything.
List 5 things I am currently into:
Blogging with you lot and loving it just for PLEASURE
Painting and drawing just for PLEASURE!
Fighting a non working Gov system to gain justice for what my husband suffered and what my small family still suffers.
Holding myself in a hug at night so I can get some sleep.
Revenge… pure and simple folks. No explanation needed.. just for PLEASURE.

Now who can I tag?
http://noaccuser.blogspot.com/
Sara

http://team-gherkin.blogspot.com/
Team Gherkin

http://pittedwindshields.blogspot.com/
CS’s spot

http://naturallyoutspoken.blogspot.com/
Jules


http://www.blogger.com/profile/21683033
Cazzie

My sister arrived on the bus at 5am this morning for the anniversary. We went for the walk down the front to the gate and she took these lovely photos...note the daggy clothes I drove into town in hoping I didn't break down.. i didn't...it was cold and I had slept in

I've written about the amazing mists we have every mornine...we are low lying and near a river...it is like a fantasy world early on... and as the sun rises it sprakles...
The dam near the gate
Out the back door

A year tomorrow.
Its so hard to believe but tomorrow 17th will mark a whole year since Don was finally allowed to die by those monstrous people who abused him so dreadfully at Royal North Shore Hospital.

I have a sense of the rightness and achievability about things I am doing. I timed my petition to end on 17th. Gathering those petitions has been the hardest thing I have ever done and not said lightly. I would come home after wards and many times it took a while for my hands to stop shaking, although out on the streets I must have looked the picture of confidence and control. It was the loneliest time. Its done now and I am waiting for the petitions which many people took away to come back in the mail box.

I collected, just by talking well over a thousand names...almost each name meant going through the whole story which became more harrowing as time passed strangely. I placed in shops and gave to people who wanted to take some home quite a few and opened my mail box yesterday to see about 10 returns, which was wonderful...hope for more in the passing days. I am hoping to get close to 2,000...call me ol positive.

The most disappointing ones have been from so called friends and relatives, most of who had to be prodded along just to put their own names and post them back although my sister Joan managed 60 which is no mean feat. She just got a clipboard and went out on the streets and did it. But then she has been injured by the medical people who failed for years to diagnose advancing breast cancer.

Its funny, all the tears at Don's funeral more so once the booze flowed, and I remember wondering "where were you all in the years before when he was so ill and we were so isolated?" all his old "mates"... not to worry. That just how it is.

How I feel now is that I have two loving daughters and although it seems we have lost the cornerstone of out little family, we haven't really. We are united because of what we saw down through all the years of his Quadriplegia, good and bad, and because we knew what a wicked and funny person he really was... something outsiders never even considered. Apart from a couple of my sisters and one friend - hey I am fifty four and I have one solid friend... and I consider I am lucky with my little group of people...I know they are all real and solid. Not everybody can claim that.

I am trying not to think of the "this time last years"... but this time last year was the last day I got to sit with my lovely man, for moments in that pigsty of a hospital, in peace, in between all the flurries of activity and excitement which surrounded his vacating that precious bed. The only way they would release him by Air Ambulance to fly home to Port Macquarie was if I drove up ahead - and for some bizarre reason it had to be me, if I would arrive there and notify them I had arrived and all was ready. Then and only then would they release him. So instead of being allowed to be with him on that last long day as I should have been, even then they had no compassion.

So on the last day we sat in the house waiting and waiting... he was supposed to arrive before lunchtime. My youngest sister was with him at least. He had known her since she was 9 in 1972 and they had some healing to do over their last visit... so that was a good thing.

On that last day I was told he may not make it on the trip, that if he died on the plane they would keep going and deliver him...

It was the strangest day...Don and I were together almost 24 hours of the day seven days of the week for decades, and on this last day he arrived surrounded by officialdom and at the house there were people everywhere.

To this day Melissa and Alison and I wish we had had the will to tell them all to piss off, which they should have known to do... and we didn't seem to be able to act. I think that may have been shock really. I recall my face feeling prickly and numb.

Anyhow, Melissa arrived last night which is wonderful. I was dreading doing these few days alone. Alison who lives a very long way away in Melbourne had been quite sick again lately, so she will be with us in spirit. One of my sisters is coming from Brisbane...



Just sometimes it really hits me, and this is the same for those who have loved as we did/do... "How can he be dead?" Simple. I know he is dead but my mind can't imagine a world in which he is not somewhere... that (if I am lucky) I will most likely live the next 20-30 years without him.

Its not like I haven't lost close family... but nothing prepared me for the rawness of how I feel inside . I can only imagine a worse thing would be the death of a child and I don't want to even go there today..

Sorry folks...couldn't sleep just had to vent. I think I will spit at the next person who uses the words "healing process"... "closure"... "letting go"... Soft PC words to cover our modern inability to just grieve, raw and black, hopefully less and less as the years pass, as we humans have done for hundreds of thousands of years...



This photo was taken about 6 months before Royal North Shore Hospital brutalised him.

Don always had these "projects" going. This one was to cover the plum tree with bird netting and safe the plums for us to eat instead. It was a stinking hot day and I am actually pleading to be released from the slavery. Jim (friend) knows this will never be allowed. Anyhow we got a frame around the tree and after hours covered and anchored a bird net around it... and the plums were huge and dark and beautiful...those the fruit fly didn't get to first... when I see shots like this I can recall how "at home" and underneath "happy" I felt most of the time. When someone like him dies its as if the foundations of the world have been suddenly booted out from under you and you are left in an insubstantial place

Mother's Day... I was out of the house by 6am and down to the markets where I had my stand gathering petitions for the Inquiry into Don's killing at the hands of the good folk at Royal North Shore Hospital...


but when I got back home about 2.... here was a lovely gift from Alison of some wooden Russian dolls... I love them
And some so beautiful flowers from Melissa and a bottle of plonk all tizzied up in gauze and topped with a balloon...mmm


I bought myself some South west Rocks (just up the road) king prawns and a doz oysters and plan on having a beano for tea...


















Mothers day by any other name can be as sweet...











Melissa will be home next weekend for Don's first anniversary... and my youngest would be but its so far from Melbourne and she has been quite sick of late... I feel for her more... when you feel as well as I have of late...you know... health is all... (with a pinch of common sense!)

John O'Donohue passed away unexpectedly and peacefully in his sleep in the night of January 3-4, 2008.
He was 52 years old.
The Family of the late John O'Donohue wish to thank all those who have so generously offered their condolences on the passing of our beloved John. We are overwhelmed by the expressions of sympathy and support we have received from all over the world and we wish to express our sincere appreciation.
In response to many requests, memorials are being organised in North America and the UK in the near future.
There is a memorial planned for May 3, 2008 in Santa Monica, California and another planned in London, 15th June, 2008. Plans are still developing for services on the east coast of the US. Details will be posted as they become available.
Through his life and works, John touched the lives of an enormous number of people across the globe. The Family hopes that his memory will be carried in the hearts of those who knew and appreciated him during his all too short time with us.
Go raibh maith agaibh go léir agus beannacht.


On the death of the Beloved

Though we need to weep your loss,
You dwell in that safe place in our hearts,
Where no storm or night or pain can reach you.

Your love was like the dawn
Brightening over our lives
Awakening beneath the dark
A further adventure of colour

The sound of your voice
Found for us
A new music
That brightened everything.

Whatever you enfolded in your gaze
Quickened in the joy of its being;
You placed smiles like flowers
On the altar of the heart.
Your mind always sparkled
With wonder at things.
Though your days here were brief,
Your spirit was live, awake, complete.

We look towards each other no longer
From the old distance of our names;
Now you dwell inside the rhythm of breath,
As close to us as we are to ourselves.

Though we cannot see you with outward eyes,
We know our soul’s gaze is upon your face,
Smiling back at us from within everything
To which we bring our best refinement.

Let us not look for you only in memory,
Where we would grow lonely without you.
You would want us to find you in presence,
Beside us when beauty brightens,
When kindness glowsAnd music echoes eternal tones.

When orchids brighten the earth,
Darkest winter has turned to spring;
May this dark grief flower with hope
In every heart that loves you.

May you continue to inspire us:

To enter each day with a generous heart.
To serve the call of courage and love
Until we see your beautiful face again
In that land where there is no more separation,
Where all tears will be wiped from our mind,
And where we will never lose you again.
John O’Donohue


sorry people...this is where I am at as the 17th May draws close... am reliving every moment of this time last year...will improve... but this all helps


here is his bibliography
http://www.jodonohue.com/books/

One of my favourite philosphers died recently aged only 52...
This is John ODonohue's poem
"For Grief.
When you lose someone you love,
Your life becomes strange,
The ground beneath you gets fragile,
Your thoughts make your eyes unsure;
and some dead echo drags your voice down
where words have no confidence.

Your heart has grown heavy with loss;
And though this loss has wounded others too,
no one knows what has been taken from you
When the silence of absence deepens.

Flickers of guilt kindle regret
For all that was left unsaid or undone.

There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.

Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief
It becomes hard to trust yourself
All you can depend on now is that
Sorrow will remain faithful to itself.

More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.

Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
John O’Donohue"

Ahhhhh! That is just so lovely and wonderful and sad... but good to read..so sad he died so young.

Re "Anon" letter a few posts back -

As mentioned the PM News took the defamatory letter off the website...but they allowed replies to be posted... so it was a win

here's the link to those replies
http://portmacquarie.yourguide.com.au/displayops.asp?class=your%20say there are twelve of them including mine... I do know most of the writers ; )... and the letters are all from different individuals... so I count this a win...

also they did a story along with photo of my street stand... here's the link to the story...the photo isn't there but it was a shocker so no loss there...
http://portmacquarie.yourguide.com.au/news/local/general/widows-campaign-for-dead-husband-builds/1235849.html


Any other anon medical professional care to write in... please do so

Melanie was it for me circa 1970 till now...I listened to this song stoned to the eyeballs in a place long ago and far away before our daughters were even a twinkle in our eyes... ahhh... 'twas a lovely time...it was an innocent time really.... made us the wicked bastards we ended up becomming.... but not so wicked as those who have lost their way and see no longer the dream of better things but of self....

Melanie is all... enjoy!