The World Is Filled With Good People...Actually...

 A week since I wrote a post. February continues with relentless heat. Our lives are revolving around staying cool and keeping our garden of pots alive. We have also been staying up later to open Station House to catch any hint of cool, hence our sleep routine is a bit higgledy-piggledy. And my temper has been rather short of late. Sorry, Michael.

Our feline fops have taken to sleeping through the day and becoming active at night. Chop has decided he is a dog, whereas Suey knows he is a god. Chop plays with Stella, adores Stella, harasses Stella. Suey parks himself between our feet whilst we are on the loo and demands attention. Michael gave up reading the paper this morning when Suey sprawled across Saturday's West and nipped Michael for stroking to commence. Stuff the news of the world, Suey's desire for worship was infinitely more important! 

Meanwhile, the canine clowns are almost as listless as us. Walking to the oval has been postponed as we are never up early enough to enjoy the dawn cool and the evenings are too hot. Every now and then, Pip, who is on pain relief for his arthritis, launches forth into a chasing and dodging game with Stella, accompanied by lots of fake growling. Stella could easily outrun Pip, but she enjoys these impromptu  play dates as much as he does. Afterwards, they retire for the duration.

The doom and gloom that is currently considered newsworthy is giving me the pip. COVID 19, the threat of a war in Ukraine, the pathetic efforts of our parliament, the lack of any definitive action on violence and the ineptitude of the NDIS grinds me down. Luckily, this last week had been filled with good, and reminders that random acts of kindness are all around us.

Jan George, multi-talented artist, singer, musician, poet, sculptor, maker and diva has taken me in hand and gives me fabulous clothing unsuited to her. Today, I am in a vibrant pink patterned frock, perfect for this Front-of-House at the East End Gallery, kindly donated by her on Wednesday. The dress washes like a rag, is non-iron and today is its second outing.

Fellow artist Pat Steele, absent mindedly chose some random bras that turned out to be the wrong size, so she promptly asked me if I'd like them. What a woman! Out of four bras, only one didn't fit me, which I donated to a wonderful entity called Fifth Avenue, a frock shop newly opened by Michelle in York. She distributes donations to those who can't afford clothing or undergarments. Some of my readers may remember I had a bra, crop tops and a dress nicked from my clothes line in December. One of Beverley's locals was going to buy some new bras for me, gratefully accepted, which I ordered through Cadd's in Northam. Unfortunately, Cadd's never called me to confirm my over-the-shoulder-bolder-holders had arrived, so I was delighted to accept Pat's generosity.

Ian and Lindy Kay, innovative artists from the Perth Hills and supporters of numerous galleries, previously gave us plinths of various sizes on long term loan. These are marvellous display units as our eyes tend to drawn to the different heights. They had also lent two big cabinets, two impressively large plinths and a glass see-through unit which is ideal to showcase jewellery to Steve and Di for their gallery in Pingelly. After falling in love with a café named Chatterbox in Williams, Steve and Di now intend to run that enterprise with Di's art as their chief creative feature. So, instead of retrieving the loaned items, Lindy offered them to us. Take a bow, Belinda Kay!

Steve delivered these items last Sunday afternoon, enjoyed a drink with us, then set off for home, fifty kilometres back down the Great Southern Highway. Due to Steve's alacrity, I was able to begin the process of cleaning, placing and filling our additional storage straightaway. Needless to say, this exercise turned into a job bigger than Ben-Hur and I only completed another overhaul of the Gallery and Giftshop on Wednesday night. However, we are thrilled with the result, just in time for our Sundowner on Saturday 5 March.

Back in December, we encountered Edward, a canny Egyptian-by-birth, who was searching for local Avon Valley artworks. Edward played his cards very close to his chest and I have needed time to suss out even the most basic of details about him. He explained that he, along with two other blokes Daniel and Dirk, along with Daniel's wife Annette, was leasing the old York Courthouse from the National Trust and hoped to transform it into a centre of stories, art, history and education. We were able to supply him with paintings by Pat Lane, Shirley Gillis and John Kaye, for which he bargained hard, but fairly as he was buying multiple works by each of them.

And blow me down, Edward, Daniel and Dirk have made their dream come true. On Friday, we attended the opening of the Courthouse Galleries, Museum, Gaol and Education Centre on Avon Terrace in York. Their enterprise just blew us away. They have restored the old cells, protecting original drawings. There are information panels everywhere. Art, artifacts and signage both amuses and informs. We were particularly thrilled to view the Avon Room, which houses paintings by our artists, along with a glorious tapestry of York. A wonderful Welcome to Country was performed by several members of the Kickett family. Aboriginal art is displayed hand in hand with all the other works. This is a fantastic achievement and an amazing addition to York and the entire Avon Valley. These blokes mean business. This has not been set up for them. The Courthouse aims to unite us all through art, culture, history and stories. Add this attraction to your must-visit sites in the Avon Valley.

Lastly, I'd like to make special mention of those tirelessly working to make the NDIS a more fair and equitable system. I am thoroughly fed up with the negative opinions aimed at participants - "You people are one of the reasons the NDIS is going broke" - a unsolicited comment made to Michael and me. Conceived by the Labor Party and full of good intentions, hopelessly run by the Liberals, the time has come to shout ENOUGH. 

We have this structure in place, so let's make it work. It's time to fire all the useless bureaucrats, the pencil pushers and poor service providers. The NDIS deserves educated and dedicated staff, including those with lived experience of disability. The National Disability Insurance Scheme's primary focus should be its participants. There needs to be no discussion about clients' expected life spans or their quality of lives unless the participant and their families wish that. We go down that path at our peril, inviting eugenics into the conversation. Yes, I chose to end my dying baby boy's life back in June 1987. However, I would fight for anybody's right to their own self determination. Otherwise, what are we?

Our Autistic Superstar has spent his entire life wanting to be ordinary. He has endured the disappointment of short, dead-end administrative contracts (filing) and multiple tryouts in hospitality venues. His one chance at open employment in an inclusive café was squashed by a political lack of will. I will never forgive that action. Yet, we are still struggling for support from the NDIS. His latest Local Area Coordinator (his fourth in two years) has admitted his needs are too complex for any LAC and he requires an adequate Support Coordination allowance . Yet, our latest request for Support Coordination funding of thirty-nine hours a year (yes, less than one hour a week) was met with a counter offer of sixteen hours a year. Go figure.

Having vented spleen, I would now like to thank, from the bottom of my heart, those who continue to get up, get dressed and get pro-active for people like Alex. In no particular order -

Shannon - District 360 support coordinator

Evan and Kathryn - Your Choice Plan Management

Amanda and Mel - Connect Case Management 

Jeanette - I'm Online Advocacy -

and I look forward to continuing to fight for Alex's best interests with the assistance of this group.

As a result of constructing this post, I am determined to remain hopeful. All these who have been mentioned here are just the tip of the iceberg of those family and friends who Michael and I hold dear and who continue to love and support us.

Until next time...

Fierce February...

Hot, hot, hot...

Chop and Pip...

Chop and Stella

Suey

At the Courthouse Opening...

My supplier of fine clothes, Mizz Jan

Bras galore!

Infinity by bra provider, Pat Steele

Lindy Kay

Ian Kay

Di  Mainwaring

Brynn, Di and Steve's Wonder Dog

Edward and Dirk

Edward and Daniel

The wonderful York Courthouse revitalised -

Let's do this!

When And What To Challenge...

2022 continues to throw difficult circumstances at us, reinforcing a trend that began with the Black Summer of 2019-2020, was accelerated by a weird pneumonia that was first reported in Wuhan, China and has reached fever pitch this year with a huge volcanic eruption, the threat of war and the perpetual fear caused by the ongoing pandemic. Throw in a looming Federal election, the reluctant acknowledgement of institutionalised sexual violence and tepid apologies, pro and anti-vaccine rhetoric, lack of coherent national strategies and the failure of this parliament to address serious social disadvantage.

So, instead of embracing "us" and interacting collaboratively as Australians, there are far too many instances of "us and them". A total lack of consensus, of acceptance, of tolerance, is to our detriment, which sadly appears to be the new normal.

A very long time ago, my Autistic Superstar Alex, was discriminated against by a music teacher who should have known better. A joyous and joyful member of a primary school choir (which was not merit selected), Alex was excluded from a performance at a local Eisteddfod. Alex's self-esteem was less important than that woman's desire to win the competition. When he was invited to rejoin the choir, I wanted to strike her dead. Alex summed the situation up in a single sentence "No, I don't want to go back to choir because Mrs. ... doesn't like me." I could have railed against this blatant discrimination until Hell froze over, but instead, Alex changed schools, joined that choir and sang with all his heart at a performance by the upper primary students at the local community centre.

My formidable friend Sam has caused me to question my reactions on a number of occasions. When she was still mobile on crutches, I didn't notice her. Once using a wheelchair, she was immediately recognisable and I felt oddly ashamed. Sam, a disability advocate, parent, grandparent, President of People with Disability Australia, artist and a long-term  Bolshy Diva has always minimised the details of her own disability whilst championing the disability community's mantra of "nothing about us without us". We should all have a Sam in our lives to question our values and beliefs and whether they are fair and equitable to all.

COVID 19 should have united us all as a nation, and for a while, that seemed to work as such. Then, as time dragged on, dissent began to rise, often in ugly outbursts. Does Covid even exist? Was the disease manufacted with evil intent? Isn't mandating vaccines a breach of human rights? Masks - bah humbug! I'm young/fit/well - she'll be right. All these people dying have underlying health conditions, don't they?

This illness, whatever it is and however it came to be, is a war. It kills people. Who would put their hand up to die? For all our sakes, we need to work together, not bicker on the sides.

Then there have been rather a lot of contentious opinions around sexual violence - 

• what about men who are raped? Why are they never mentioned? (All rape is heinous and unacceptable.)
• why do women encourage rape by getting drunk or wearing revealing clothing? (All rape is heinous and unacceptable.)
• blokes get led on by women! (All rape is heinous and unacceptable.)
• he didn't know what he was doing - he was drunk/stoned/upset/jealous/frustrated. (All rape is heinous and unacceptable.)
• he/she snapped. (All rape is heinous and unacceptable.)
• she shouldn't have gone with him! (All rape is heinous and unacceptable.)
• he/she had a troubled childhood. (All rape is heinous and unacceptable.)
• he/she only assaulted the child once/twice/a few times (All rape is heinous and unacceptable.)
• he/she should have told their parent(s)/another teacher/sibling/friend. (All rape is heinous and unacceptable.)
• he/she must have made it up! He/she is a pillar of society! (All rape is heinous and unacceptable.)

Attitudes regarding sexual and other violence against men, women and children will only change when all of us recognise these acts are crimes. As far as creating false stories, I understand that may happen in a minority of cases, which unfortunately reinforces mixed responses to genuine rape victims.

Finally I come to the drawn out agony that is the upcoming Federal Election. I have and remain the classic swinging voter. That Christian Porter will no longer be my Federal member of parliament is a relief. My distaste for the man is due to his failure to support Alex and me when he was Social Services minister. I have never experienced such a limp handshake or limp interest and I hope never to suffer either ever again. 

Hence, I remain to be convinced by the candidates in O'Connor which has swallowed the rural parts of the former seat of Pearce. The only face I know is Giz Watson, the Greens representative. I call upon both Rick Wilson and Shaneane Weldon to convince me why I should vote in their favour. O'Connor is a safe Liberal seat, so I immediately have a problem as I believe the current Liberal Prime Minister is only interested in power and is not worthy of the Office.

A local acquaintance wandered into the Gallery yesterday afternoon to ask me about "the Situation". He meant the mandate for mask wearing which he personally doesn't think is needed. However, he then dropped the solution to every point I have made in this post. "Wearing a mask does no harm", he stated, reinforcing his commitment to our elderly or vulnerable residents here in Beverley.

Let's all do no harm.

All For Thumbs And Thumbs For All!

The thumb is an exceedingly useful digit. Thumbs allow us to demonstrate both powerful and precise movements, from lifting weights to writing with a pen. We are unable to effectively use an object as a tool without an operational thumb. Everyday tasks become problematic, especially as thumbs are prone to arthritis, injury, syndromes, ordinary wear-and-tear and overuse in some professions.

Michael, through his occupation, art and pastimes has caused havoc in both his hands and wrists. Starting with repeat Carpel Tunnel Syndrome, he then accelerated to lack of cushioning cartilage, damage due to arthritis and that odd ailment known as Trigger Finger. He has also admitted that frequent battering of his left hand with hammers over many years had done him no favours.

 After three operations, the shortening of his ulna bone, a partial wrist fusion and a most stylish and well engineered plate in his forearm, Michael's right side is about as good as it is going to get. Only after he gained some relief from the pain on that hand and wrist did he begin to recognise the discomfort of his other side.

Matters came to a head when his left thumb gave way whilst he was hanging one of Brian Aylward's drawings. Fortunately the picture itself was undamaged, however the same could not be said for the surrounding frame. We were just very lucky that Brian forgave Michael's accident and we didn't have to cough up for a new frame.

After X-ray, MRI and CAT scan, the Boy Wonder had a clearer understanding of Michael's troubles in his left hand and wrist. He described the structure as a disaster and spent some time pondering how to solve a number of issues. A cortisone injection gave Michael relief for a couple of weeks, before the pain returned worse than ever. Ben considered a wrist fusion an unreasonable risk at this time but a date for surgery was set to give Michael better control of his left thumb.

And thus, we rocked up to the Mount Hospital for Cattle Call at 6.30 am on Monday. As Michael was last on Ben Kimberley's list that morning, we were not processed until well after 7.30. We had a minor grumble that we could have had an hour's more sleep at Callum and Bronwyn's house where we'd stayed. 

Then there was issues (again) with me boarding. In all my stays with him, the confirmation of my boarding status has only been approved at the eleventh hour. A promised phone from Bed Allocations had not eventuated, so I was rather terse when I rang the Mount as 4 pm last Friday. Promises were assured but I still hadn't had a definitive answer as Michael was admitted. Many thanks must go to Paul, the efficient and empathetic Concierge at the Mount Admissions who smoothed the way and sorted the issue. I could once again board at the Mount for the duration of Michael's stay.

The morning, as ever, was pretty boring. Michael snoozed for some of the time and he was eventually taken to the anesthetic waiting bays around 11 am. I kissed him goodbye as he was wheeled away from me into theatre.

Using Patient Finder, I kept tabs on him. I knew the surgery would be rather fiddly, so I was unsurprised when he didn't go to Recovery until an hour later.  And that was when the trouble began. Apparently, Michael took longer than usual to wake up so he had to stay put until the nurses were satisfied. When I asked him later about his extended stay in Recovery, Michael maintained that he was tired and they kept disturbing his slumber!

Bleary eyed and sleepy for an hour or so, except to eat a sandwich, Michael began firing on all cylinders around dinner time. The physio, Barney was visiting when we realised every other patient on Karri ward appeared to be eating. A request to the nursing staff and Michael received the roast beef dinner he'd ordered. I had asked for the same, but they had run out so I had to accept a vegetarian dish instead...

The night passed relatively uneventfully, except for the hassles with the aging airconditioning, which started out too cold, warmed up for a bit and was cold by morning. More frustrating was that the toilet seat wouldn't stay up when required (oh yes, we've had lots of comments about that...), no blanket warmer with blankets on the ward and no microwave yet in the patients and visitors kitchen. If the airconditioning hadn't been quite so vicious, I would have been happy with a couple of thin and flimsy coverlets. These are issues that I had been assured would be fixed - in 2021.

Breakfast was also disappointing. I had eagerly chosen the smashed avocado and crispy bacon on toast. The avocado was bitter, the bacon was stodgy and the toast wasn't. An accompanying tomato was neither raw nor cooked through and unappetising. Michael's porridge was glue-like and his toast wasn't as well. Fortunately the yoghurt and granola was edible.

And the cost of this exceptional stay? $2800 for Michael. My boarding hasn't been charged yet. The anaesthetist has lodged his bill, but the Boy Wonder has yet to do so. The nursing had been good, very good by a couple of nurses, but there had been omissions - Michael's wrist had to be shaved in pre-op and paperwork was incomplete. 

I do not regret contributing to private health insurance, so we may have the doctors of our choice. However, the Mount continues to look old and tired and is in desperate need of renovation, particularly the central airconditioning system, the toilet seats, the thin and scratchy linen. the bathroom issues (poky with poor drainage) and rust on the beds. Time, gentlemen, for a major upgrade. I noted with interest that many Google reviews mention the tired rooms and drop in the quality of the food on offer.

The good news is that we are home safe. Michael's pain levels, are at times, difficult, and he is often light-headed and very tired. His temporary cast will be taken down tomorrow when we visit Sandy Kevell, Occupational Therapist to the Stars, for his latest splint. And then, we just wait and see how much function he regains in his thumb. And hopefully, a lot less discomfort. 

All for thumbs and thumbs for all...

That troublesome bone...

Causing pain and loss of function...

So, Michael had surgery...

By Mister Ken Kimberley...

Prior to admission, we had comic relief, courtesy of Miss Immy...

Just back in his room...

Hi honey, I'm back...

Ah, morning coffee...

Home!

His left arm is not elevated!

With Suey and Chop...

How To Create A Wheatbelt Garden With A Pile Of Rocks, Rather Than A Pile Of Money!

Our lovely friend Jodi stayed in our guest room for four months, along with her big and boofy canine companion Zee. She created a wonderful green space with all her potted plants outside and fenced a small additional area for Zee's toileting purposes. We were rather sad when she departed back to the Big Smoke as we had enjoyed their company very much indeed.

We gradually added some of our plants to the guest room's courtyard on the eastern side of our house. However, we were left with the blank canvas of Zee's former ablutions spot, which only had Mister Squiggle, an elderly valve handle as a decorative feature.

How to beautify? I had visions of a few scattered pots, some hardy ground covers, a narrow central path and river stones to complete the effect of a more arid, rather than a lusciously very green garden. I eagerly discussed these plans with Michael.

Being ever practical, he pointed out that buying enough river stones would be very expensive. I immediately succumbed to a tanty, followed by a fit of the sulks. He was right of course, but I was just cranky that my fantasy had been scuttled so quickly.

Once over my pique, my brain raced about, imagining an acceptable alternative scenario. A substantial hillock of rocks had sat, mostly unmoved, just near my clothesline for the last year or so. Michael had envisaged using them to build a dry wall around the lemon tree, but had never quite started this project. I promptly decided that we had enough to share for both Michael's wall and my now rock garden. 

Then came the actual work. My first wheelbarrow load was delivered, albeit with quite a lot of wobbling, from the pile, down the lane and up the driveway to the location.  My second effort was not quite so successful. At the intersection of the driveway and Anzac Lane, the wheelbarrow tipped over and I followed immediately afterwards. My bum and dignity were both bruised, but I vowed to not let this mishap slow me down. Rather than try to straighten the wheelbarrow, I simply moved the boulders one by one into position. For the third load, I enlisted Michael's able and logical assistance so I wouldn't end up on my arse again.

A final load was completed the following morning. In the four pots, I planted a vinca seedling, two strawberry pups and the baby of a tree that was doing very well in the main courtyard. I took photos and admired my handiwork. Just as well, because over the following three days, the temperature moved steadily upwards to 44 degrees C (111 degrees F) and all but the vinca kicked the bucket, in spite of generous watering morning and evening. That'll teach me to get too cocky. 

When we left yesterday afternoon, the remaining vinca and groundcovers were still alive. We'd endured a really nasty fourth day of heat with howling winds and very hot temperatures before a welcome change. However, several bushfires to the east and south of Beverley were still at a heightened level and we understand homes and buildings have been lost and a chap critically injured defending his house. We hope that the cooler conditions ease the threat and nobody else is hurt.

Having left Beverley with the temperature still well over 30 degrees, we were forced to dig out hastily added extra layers, when we arrived at Cal and Bron's home two hours later. The heat had gone, the rain had come and we were cold! A most interesting sensation after such a string of blast furnace days.

My no cost garden project...

The plants that lived...

The three pots which succumbed!

Still pleased with the overall effect and will replace the corpses...

How I imagined the wheelbarrow and me working as a team...

What happened to the wheelbarrow (without the pretty outcome!)...

What happened to me!

Good to remember.

God, Sexuality and Genetics...

I have been watching, with interest, the furore surrounding a Christian school and its "Pastor" principal, who attempted to entice parents into a rejection of any gay and trans children within the school community. Interestingly, the document was repealed following an exodus of staff and students. I think that a safe bet would be that Mister Principal still holds his views and the scrapping of this edict has only been for economic purposes.

Then, there is a bloke named Lyle Shelton who has his own page on Facebook and comes across as being reasonably lucid. He believes "parents who disagree with homosexuality should be allowed to have their children in a school community that teaches the virtues of the Christian sexual ethic".

Lyle has a valid point, except parents and staff from WITHIN this school have been the ones that caused the disappearance of this particular article. I am sure there are families who wish to follow the "Christian sexual ethic" and that's why schools such as our "Pastor" principal's college exist. 

I just don't believe that this school should be afforded similar funding as other Christian schools that have a more balanced ethos.

And Lyle, along with a multitude of other religious conservatives, has missed an important point. Genetics determine an individual's sexuality and orientation, just like other inherited traits such as eye and hair colour.

A very long time ago, my twin girls were stillborn on 19 January 1988. They had a condition called twin-to-twin transfusion syndrome, which involves two identical foetuses, a single placenta and an imbalance of blood supply. Thus, at birth, Zoe was bigger and bright red as she had been receiving an overabundance of blood. Melanie was tiny and almost bloodless. She had been shunting her blood to her sister, which is part of the condition. Melanie died between 24 and 25 weeks and Zoe a week later. I believe she was distressed at her sister's death and performed somersaults until she repeatedly knotted her cord and died from asphyxia a week later.

Why I'm telling this story is not to gather sympathy. If the girls had lived, there would be no Callum, Alex, Bron or Miss Imogen Ivy. In my raw grief, all those years ago, I blamed God for taking my girls, along with their brother Christopher and my unnamed miscarried first baby. I ranted and railed in my distress at the unfairness.

Then I remembered the words of the wonderful hospital chaplain, a chap named Robert Anderson, who was patient, warm and completely honest. God has nothing to do with genetics was the essence of his message to me during that horrible time. God had not caused twin-to-twin transfusion syndrome in my pregnancy. God had not caused the death of my precious babies. And God had been unable to save them as he didn't hold the power to alter the outcome. Thirty-four years later, I still find comfort in his words.

The good news is that treatment for twin-to-twin transfusion syndrome has advanced and more babies who develop this condition in-utero have a better chance of survival. But this scary scenario still happens, because genetics control these outcomes, not God.

God and I have made our peace, thanks to Robert. When Alex, my Man Child, arrived with a complex heart defect similar to his brother Christopher and then went on to develop asthma, autism, scoliosis and an eclectic array of health issues, I knew that my God had no part in Alex's creation. Would I change a hair on Alex's head? Not bloody likely, as then our autistic superstar wouldn't be who he is.

So, when research discovered that sexuality, sexual identity and sexual orientation were all genetically based, I was profoundly relieved. I live in hope that, eventually, these scientific facts will ease the prejudice endured by the LGBTIQA (Lesbian, Gay, Bisexual, Transsexual, Intersex, Queer and Asexual) community and allow them their dignity to live their lives as genetics have dictated.

After all, aren't we all God's children and creatures?

Oops...

Lyle Shelton - conservative political lobbyist, failed political candidate, member of the Christian Democratic Party and was disendorsed due to  "irreconcilable differences" with Party member Fred Nile (!). I suspect he does not have much of a sense of humour either...

An explanation of twin-to-twin transfusion syndrome

Early photo of the Children's Hospital in Perth

The multi faith centre at PMH...

My greatest achievements - Vanessa...

Callum with Bron and Immy

And Alex Christopher, named for his brother who did not survive...

Yes!