Tag Archives: Muscular Dystrophy

Our Tenacious Little Dancer.

“I think she is growing up, and so begins to dream dreams, and have hopes and fears and fidgets, without knowing why or being able to explain them.”

Louisa May Alcott

Today, our beautiful daughter suddenly grew a couple of inches taller when she stepped into her very first pair of pointe shoes and she was up en pointe. This has been something she’s been aspiring towards ever since she first started ballet as an almost four year old eight years ago. Indeed, I remember a time when she was very small and she stood in a couple of plastic cups to get the look (and a bit of added altitude). In hindsight, I probably should’ve got those cups off her feet and been more safety conscious. However, she was so happy, and it was too good a photo opportunity to miss.

In typical Rowena fashion, this pointe shoe fitting demanded a bit of pomp and ceremony. Indeed, quite frankly if she wasn’t twelve years old, I would’ve popped the  champagne, even though I’m not that partial to the taste. Even as a child, I was mesmerized by the theatre of it all what with popping the cork and all those bubbles shooting out like stars across the room with unbridled joie de vivre. Bubbly encapsulates the excitement, the celebration the exquisite preciousness of the moment in a way that nothing else does. You don’t even need to drink the stuff.

However, instead of a champagne celebration, we met up with my Mum for lunch and coffee and then the three of us headed off to Bloch’s for her 3.00pm appointment. By the way, our daughter wasn’t the only young dancer who had to get that very special pair of first pointe shoes on the very first day of the school holidays. The fitter had been flat out all day and we were something like her 11th fitting. Yet, she seemed just as excited for my daughter and for us as the first. As a dancer herself, she knew what this moment was about and really helped to make it special and informative. If there’s one thing I now know about pointe shoes, it’s not to get them wet. I also confess that I’ve also seen my daughter’s feet in a new light.

Helping en pointe BW

We really appreciated the care and assistance we received at Bloch’s Hornsby with the shoe fitting. Naturally, the staff are dancers themselves and I felt that our fitter was handing down the mantle to our daughter. They actually gave her a certificate. She’d joined the club.

Our daughter has been learning ballet for eight years now and she’s worked very hard for the last 12 months doing all sorts of stretches to prepare her feet and toes. Indeed, she needed to have a physio consultation before she could go for her pointe shoe fitting. By that stage, her teacher already knew she was ready. However, she likes her students and a parent to be aware of the physicality of ballet and how the muscles bones and other bits and pieces come together to to produce your swan. Through being more conscious of this physical element and looking after your body, dancers can help prevent injury, wear and tear. Given the difficulties I have with movement, I have appreciated these physical realities through a different window, which has given me an insight into the physical demands of dancing. That it isn’t only about costumes, makeup and hair. After all, injury and being on the sidelines is not just an inconvenience for a dancer. It can mean The End, or simply the end of  dance as they know it. When dance is your passion and raison d’etre, that can feel like surviving your own death. (I’ve gone through that with my own battles.)

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There was so much to learn at her fitting and you can see here that Miss is very focused taking it all in. She hasn’t been swept away by the excitement of it all.

For every young dancer along with her birth and dance families, getting their first pointe shoes is rightly an incredible achievement and time for celebration. While you might see those beautiful pink satin pointe shoes and immediately think of the likes of Degas and his dancers and the professional stage, these young girls are still within cooeee of being the “awkward duckling” who started out. There were no guarantees back then and for us, there were  certainly no expectations. I just dropped her off for her first class and the mysteries of dance went on behind closed doors until open days or the concert. From where I sat, ballet was just a part of childhood for a little girl. A bit of fun. An activity. It had nothing to do with my dreams, unless it came to taking her photo. Now, that was something I understood.

edgar-degas-Little-dancer

Edgar Degas, The Little Dancer. She reminded me of my daughter until I found out she was quite distorted.

Although I wasn’t so conscious of this at the time, seeing Miss in her pointe shoes really brought home what we’ve all been through to get her there. I don’t think anybody’s road is easy, but everybody’s road is unique with their own particular reasons why getting into those pointe shoes is a personal miracle and a triumph over adversity. Most of you will be aware that I live with a life-threatening auto-immune disease which affects my muscles and lungs. However, Miss has a rare digestive disorder called gastroparesis, which particularly flared up a few years ago and she was barely able to eat. Indeed, she was struggling to get to school or to ballet and she missed months of classes.

Amelia at the san

Miss in hospital waiting for her endoscopy. So brave but she also loved having her own remote control TV!!

As you could imagine, it was very difficult to know quite how to manage the situation. We were very concerned about her actual health and it would’ve been quite a logical decision to cut out dance to focus on her schoolwork. Yet, we’re fighters. We might be holding onto the cliff face by our fingertips and kicking and screaming, but we don’t give up. Indeed, it was only after missing a couple of terms and feeling like all my motivational strength had run out, that I truly started thinking it was time to pull the pin. Her teacher was also very patient. However, dancing is a team sport and it’s hard to manage a team on three legs. So, with the end of year concert rapidly approaching, it was crunch time. As a possible way forward, her teacher suggested that her friend came over and they practice the dance together. I’m so thankful because her friend saved the day. That was the turning point. She picked up the dance. Was in the concert and was back on her dance feet again. Then, the following year, she had a friend at her new school who was a passionate dancer and she also a tremendous encouragement. By the end of that year, Miss decided to audition for Dance Team at the studio and was accepted. She hasn’t looked back and with the incredible training and support from her teachers, is growing from strength to strength. Clearly, with all these dance angels working flat out with her on multiple fronts, our daughter must’ve been destined to get up on those pointe shoes today. It’s been a real team effort.

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Afternoon Tea.

By the way, while we’re talking about life lessons from the road, organization has been another hurdle. While other girls have managed to get to class with a perfect ballet bun and all components of their uniform, all too often Miss could only find one ballet shoe and her ballet bun could well have been reinterpreted as a bird nest of its own unique variety thanks to her superfine hair, where getting the knots out produced spine-chilling screams. Yet, somehow or another, all of this has mostly become a thing of the past.

After explaining some of the hurdles we’ve had to overcome, perhaps you’ll understand why I thought this moment might never come and the tears of joy I held back while we were there as I felt like the happiest Mum alive. Back when our daughter was struggling, I remember seeing a group of older girls who’d just got their first pair of pointe shoes. They were exuberant and clearly this meant the world to them not only as individuals, but as a group. I felt so privileged to catch a glimpse through this keyhole and get an insight into just how important this moment is to a young dancer and what it would mean to my girl. Whatever happened with my daughter and dance, I wanted her to hang in there at least until she’d gone en pointe and  been a part of that bubble. Not for me, but for herself. I could could sense something in her soul, which is becoming more apparent with every passing year. Dancing is her thing. It isn’t her only thing but it lights her fire.

So, now we find ourselves at a new beginning. Once she goes en pointe, she has to learn to dance all over again. Although it is tempting to try to fast forward and think about where all of this is heading, he’s only 12 years old. The world is her oyster and there are still so many forks in the road. She doesn’t need to choose one yet. However, it can be difficult to maintain a balance and keep an open mind when you fall in love with such an alluring juggernaut that you could easily sell your soul to dance in ballet’s fire. Somehow, we just need to keep a level head and maintain a balanced path…at least for now.

After the fitting, she went to stay with my parents for the week taking her beloved pointe shoes with her. If they weren’t so precious, it wouldn’t surprise me if she slept with them under her pillow or close to her heart. They meant the world to her and I’m so proud of her for all she’s overcome, her hard work, dedication and most of all her passion for dance. I am also very grateful to all the people who have helped her along the way, her teachers, my parents but also very much her friends who have been so supportive and encouraging and that’s not something you hear much about in the dance world. She has some incredible dancing mates.

That is also why I am sharing our journey via the road less travelled for our daughter to get her pointe shoes.  That parenting isn’t all about bragging rights and showing off about your kids’ talents. It’s also about sharing about the hurdles and difficulties so other girls don’t give up along the way because they feel they don’t measure up. Aren’t good enough without giving it all they’ve got. I belong to the Muscular Dystrophy community and not everyone can get up on pointe shoes or dance in a conventional sense. However, that doesn’t have to stop you from finding a way. Indeed, I’ve done some adult classes myself and have my own pair of pink satin ballet shoes. I think it helps to understand that you’re not the only one who might be going through difficulties and wondering whether to persevere with dance or whether it’s all worth it. No one else can answer that on your behalf. However, we are meant to encourage each other and dance is such an exhilarating experience. It’s worth fighting for.

Do you have any dance stories you would like to share? Or, a story of triumphing over adversity? I’d love to hear from you.

Best wishes,

Rowena

PS I have a strange sense of humour. However, after hearing about how her pointe shoes have paper mache in the toes and are very sensitive to moisture, including sweaty feet, I found I found a great deal of humour in this quote:

“Growing up, I had only one good pair of shoes. So on rainy school days, my mom would slip plastic bread bags over them to keep them dry. But I was never embarrassed. Because the school bus would be filled with rows and rows of young Iowans with bread bags slipped over their feet”
Joni Ernst

So, if you see a dancer with plastic bread bags over er pointe shoes, you’ll know that’s our daughter!

A Weekend in Parramatta, Sydney.

Last weekend, my husband and I went to Parramatta for the weekend. In many ways, it was quite an unlikely place for us to go for the weekend, as it’s not exactly known as a tourist Mecca. However, I’m really glad we had the chance to explore this part of Sydney for the first time in any kind of depth. By the way, the reason we were staying in Parramatta, was that we were on a couple’s retreat hosted by Muscular Dystrophy NSW, which helps support my various “idiocyncracies”, as I’ve now  refer to them.

It is hard to quite known how to adequately describe Parramatta. Indeed, it’s hard to to encapsulate any place in a few words, or a handful of photographs. Yet, it’s seems that travellers, those of us who are only passing through, always feel the need to try, at least on the back of a postcard.

If I had to summarise Parramatta on the back of a postcard, I’d start of with a brief history lesson.

Parramatta was founded in 1788, the same year that the First Fleet arrived in Sydney. The British settlement desperately needed food and was struggling to find fertile soil in Sydney Cove.  During 1788, Governor Arthur Phillip had reconnoitred several places before choosing Parramatta as the most likely place for a successful large farm. Parramatta was the furthest navigable point inland on the Parramatta River (i.e. furthest from the thin, sandy coastal soil) and also the point at which the river became freshwater and therefore useful for farming. Although initially called Rose Hill, On 4 June 1791 Phillip changed the name of the township to Parramatta, approximating the term used by the local Aboriginal people.[19]

 

In 1789,Phillip granted a convict named, James Ruse, the land of Experiment Farm at Parramatta on the condition that he develop a viable agriculture. There, Ruse became the first person to successfully grow grain in Australia. The Parramatta area was also the site of John Macarthur’s Elizabeth Farm, which had pioneered the Australian wool industry by  in the 1790s. Philip Gidley King’s account of his visit to Parramatta on 9 April 1790 is one of the earliest descriptions of the area. Walking four miles with Governor Phillip to Prospect, he saw undulating grassland interspersed with magnificent trees and a great number of kangaroos and emus.

In years gone by, the story of Parramatta would’ve been a white man’s story. Indeed, when I was at school, we learned nothing about the frontier wars between Europeans and the indigenous Aboriginal people. It’s only now, that I’ve heard about the Battle of Parramatta, a major battle of the Hawkesbury and Nepean Wars, which occurred in March 1797 where resistance leader Pemulwuy led a group of Bidjigal warriors, estimated to be at least 100, in an attack on a government farm at Toongabbie, challenging the British Army to fight.Governor Arthur Phillip built a small house for himself on the hill of The Crescent. In 1799 this was replaced by a larger residence which, substantially improved by Governor Lachlan Macquarie from 1815 to 1818, which is now referred to as Old Government House.

Above: St John’s Church

So, having given you a brief historical snapshot, how about you join me at Parramatta Station. After such a long trip, I just had to stop for refreshments at the Guylian Cafe, where I had a heavenly chocolate dessert and a cappuccino. From there, I walked across to Church Street. On the left, there’s historic St John’s Anglican Church and across the road, you’ll find Parramatta Town Hall, which reminds me of a two-tier wedding cake. Next to the Town Hall, the future of Parramatta is starting to rise out of what has often been hard times. Indeed, throughout our walks around the Parramatta CBD, new buildings and construction sights resemble alien intruders. Next to the Town Hall, we spotted the Bourke Street Bakery, where we had an unforgettable Raspberry Cream Meringue Tart. That’s when we spotted the captivating water fountain, and I’ve just found out this whole area is now called Centenary Square. There’s a ping pong table, large outdoor chess set and on Sunday night, we even spotted a group doing salsa outside together. So, there really are moves afoot to give Parramatta not only a facelift, but also a strong community feel and a heart.

This leads me into a dynamic thriving food area further up Church Street, known as “Eat Street”. Personally, I found this area had a sort of bazaar feel about it with restaurants and street food all sandwiched together to a point that you’re almost not sure where your chair or table belongs at times. There are street vendors, restaurants from a smattering of cultures…Italian, Greek, Lebanese, Thai, Mexican, Cuban. The choices were dazzling and in the end we went to a burger place my husband had been to near work and I had a pork belly burger. We went to a chocolate cafe for dessert. Yum.

Above: I spotted these in the Army Disposal Store.

Moving further Church Street towards Phillip Street, the buildings looked rather old and sad to be honest. There’s old and historic, but quick cheap and nasty construction only gets worse with age. However, that’s not to say that the shops didn’t have character and appeal. Indeed, we found an army surplus store, which in itself is a rare breed these days, but this one also had loads of personality, and there was even a chandelier when you walked in. I also found Tom Cruise and the Terminator on the wall 80s style. In terms of interesting places, I should also point out the Bavarian Bier Cafe, which is housed inside an historic Church. We had planned to have dinner there on Saturday night, but couldn’t get a table.

Above: The German Bier Cafe.

We stayed at the Parkroyal Hotel on Phillip Street, and really enjoyed our stay. As I said, we were staying there with other couples from Muscular Dystrophy NSW. We met up together in the foyer and had a beautiful dinner in the hotel restaurant together on Friday night. I think I only knew one person well beforehand, but by the end of the weekend, we were one big happy and well-fed family and exchanging email addresses and contacts. It really felt like such a blessing to all get together, but it was also great that the weekend away also provided for time for Geoff and I to be on our own. We have really been quite desperate to spend any time to actually focus on each other and take care of each other, without trying to spread ourselves four ways, or even further if the dogs or work are also demanding attention. We are by no means alone in this and I’m very grateful to Muscular Dystrophy NSW for organizing the retreat, my parents for taking the kids and a friend for minding the dogs and the home front.

In my next post, we will visit Elizabeth Farm and Old Government House.

Have you ever been to Parramatta? What are your thoughts about it?

Best wishes,

Rowena

W- Andrew Newell Wyeth: Letters to Dead Artists…A-Z Challenge.

Welcome to my series of Letters to a Dead Artists, which I’ve put together for the 2018 Blogging A-Z April Challenge. For the past month, I’ve been steadily moving through the alphabet and after writing to Leonardo Da Vinci yesterday, today I’ll be writing to Andrew Newell Wyeth, an American realist painter.The music I have chosen to accompany Andrew Wyeth is Celtic Woman singing You Raise Me Up

Wyeth was born on July 12, 1917 in Chadds Ford, Pennsylvania, and passed away at the age of 91 on January 16, 2009…a very long way from Sydney, Australia.

“I prefer winter and fall, when you feel the bone structure of the landscape – the loneliness of it, the dead feeling of winter. Something waits beneath it, the whole story doesn’t show.”

Andrew Newell Wyeth

Prior to setting out on this challenge, I had never heard of Andrew Newell Wyeth, and to be perfectly honest, I only found out about him on a Google search trying to fill up the vacant letters. It’s a problem I face every year, where I’m forced to leave something out because certain letters are bombarded with choice, and I’m left desperately scrambling to find anything for others. However, my criterion for choosing every single one of these artists, whether I knew them before, or whether  they popped up in the Great Google Lucky Dip, was that I needed to experience some kind of emotional, psychological and even spiritual connection. It couldn’t just be a case of: “She’ll be right mate”, or any artist will do.

As it turned out, Andrew Newell Wyeth’s iconic painting Christina’s World (1948), grabbed me by the throat and almost stopped me dead. This artist I had never ever heard of before, had never met, and lived on the other side of the world, had miraculously captured my suppressed, desperate, clawing frustration of battling against the muscle weakness brought on by dermatomyositis.

“To be interested solely in technique would be a very superficial thing to me. If I have an emotion, before I die, that’s deeper than any emotion that I’ve ever had, then I will paint a more powerful picture that will have nothing to do with just technique, but will go beyond it.”

Andrew Wyeth

When I first saw the house on top of the hill, and Christina groping her way up through the grass, I could feel her struggle in my own body. Yet, it didn’t occur to me straight away that Christina also had some form of muscle loss. Rather, I thought the painting simply portrayed human struggle, and that clawing desperation to make it up the top of the hill. Indeed, I felt a sort of chill or goose bumps, as soon as I saw the painting. There was that instant recognition of myself, and of course, it helped that I also have long dark hair and there could well have been quite a likeness once upon a time. Of course, it helps that he painted her with her back to the world and we can’t see her face.

Christina Olsen 1947.jpg

Andrew Wyeth, Christina Olden 1947

Indeed, seeing Christina’s World, I was swept into a horrific vortex of memory, reliving when I simply tripped over a broom at home.  Much to my surprise, I was literally swept into a blood-chilling nightmare, when I couldn’t get myself up again.

Rowena with kids Mt Wilga 2007.JPG

How the camera lies. An everyday photo of Mum and kids, except I was in Mt Wilga Rehbilitation Hospital and could barely walk or get myself up off the ground. That was just over ten years ago.

There I was a 36 year old Mum home alone with my two young kids. Mister was about three and a half and at an age where, like a scene out of Dead Poet’s Society, he’d climb up onto our back shed to get a better look at the “mountains”. He was somewhere when I fell, which usually meant mischief, danger or a combination of the two. Meanwhile, Miss was only 16 months old, and Mummy’s little shadow. However, that also meant that when I fell, I knocked her over on the way down. She was crying and this was no ordinary cry either but had that same chilling sensation of fingernails scraping down a chalkboard, which travels right under your skin. Of course, I’d normally pick her straight up. Comfort her. Kiss it better. However, I was weighed down like a sack of lead potatoes, and couldn’t move at all to reach her and just had her cry in my ear.

Instead, there I was lying face down on the tiles and couldn’t get up. Moreover, at this point of time, I didn’t have a name for the horrific monster which had invaded my body and my bloodstream. Not having a diagnosis, in a way, meant that it didn’t exist and that I was just “tired”. It was just part of being a Mum with very young kids… having a baby. Sleep deprivation and utter exhaustion are par for the course, aren’t they? However, this was different…something nasty, sinister, a monster.  While I hurt my knee in the fall, why couldn’t I get up? For somebody with normal mobility, this was so surreal and strange. Quite unlike the sort of panic that comes, when you can’t feel your legs. As far as I was concerned, there was no reason I couldn’t get up. I was just tired, rundown although there was something funny going on with my blood tests. Eventually, I was able to lift myself onto my bottom and I shuffled into the kitchen. For once, the cordless phone was there when I needed it and I rang my husband who was at work a two hour train trip away. Clearly, he couldn’t just pop home and magically save the day. Meanwhile, my call filled him with a sense of dread, absolute powerlessness and horror. Clearly I was very unwell and needed immediate help, and he couldn’t do a thing. In fact, I don’t think either of us even considered calling an ambulance. That was for emergencies and I’d just simply fallen over…

All he could suggest was levering myself up with a chair and that worked. It took a further six weeks for me to finally receive a diagnosis and then I was in a combination of hospital and rehab for about 8 weeks.

“There’s a quote from Hamlet that is my guide… He tells the players not to exaggerate but to hold a mirror up to nature. Don’t overdo it, don’t underdo it. Do it just on the line.”

Andrew Wyeth

So, while it was sensational to find Christina’s World and to see my struggles depicted and represented on canvas, there was also an enormous sense of sadness. You see, like Christina, despite pushing myself beyond breaking point so many, many times, I still haven’t made it to the top of the hill. I haven’t made it home. Not only am I adrift, but there’s also that intense frustration better known as angst where I can see where I want to go. Where I’m meant to be. Yet, I’m constantly clawing through the mud and getting nowhere.

“I do an awful lot of thinking and dreaming about things in the past and the future-the timelessness of the rocks and the hills-all the people who have existed there. I prefer winter and fall, when you feel the bone structure of the landscape-the loneliness of it, the dead feeling of winter. Something waits beneath it, the whole story doesn’t show.”

Andrew Wyeth

Yet, ironically there is also great strength in persevering through weakness. Indeed, there’s that old adage: “what doesn’t kill us, makes us stronger”. That’s so true and these days they’ve even called this fighting comeback…resilience. Indeed, resilience is now considered one of the key ingredients for getting through life. So, for those of us who received more than their allocated glass and a half, we must be powering all the way to the moon. Well, if only we could make up that darn hill.

By the way, after spilling my guts about how Christina’s World touched me so personally, I had to laugh as these prophetic words of Andrew Wyeth’s:

“I get letters from people about my work. The thing that pleases me most is that my work touches their feelings. In fact, they don’t talk about the paintings. They end up telling me the story of their life or how their father died.”

Andrew Wyeth

I guess it’s not surprising that Wyatt knew and had experience intensive suffering and loss himself. In 1945, Wyeth’s father and his three-year-old nephew were killed near their home, when his car stalled on railroad tracks and was struck by a train. Wyeth has often referred to his father’s death as a formative emotional event in his artistic career. Shortly following the tragedy, Wyeth’s art consolidated into his mature and enduring style, characterized by a subdued colour palette, highly realistic renderings, and the depiction of emotionally charged symbolic objects[1].

Christina’s World was painted a year after his father’s death.

Although this introduction is very rushed and feeling incomplete and inadequate, I’m going to get moving and start writing my letter to Andrew Wyeth.

A Letter to Andrew Wyeth

Dear Andrew,

For the last month, I’ve been trying on the shoes of so many artists and tried to see the world through their eyes, before I take a huge, audacious step and actually write them a letter. As much as it’s been a lot of fun in a heavy research searching for the meaning of life kind of way, it’s also been very challenging, especially as it seems that almost every artist without exception, has experience incredible suffering. I don’t know whether it’s this understanding and empathy with suffering, which has given their paintings added depth and emotional insight, but there’s definitely that common thread.

Do you think artists suffer more than others, and their grief inspires their art? Or, does their art become more of an antidote, a way of releasing the anguish trapped inside?

I have asked God myself why there’s so much suffering, especially at one point where I felt he’d channelled centuries of wrath in my direction and afflicted me with the dermatomyositis. However, ever faithful, he replied and said: “if it’s good enough for me, it’s good enough for you.” I didn’t challenge him on that front again. He’d made his point.

Anyway, I’d like to thank you for giving us Christina’s World. While everybody who sees the painting could well have their own interpretation, her story obviously has a very personal connection for me. Trying to get up hills is particularly hard for me these days. Not so much due to the muscle weakness but due to the associated problems I have with my lungs, which are currently not much over 50% capacity. I don’t know why I’m telling you all this, but you seem like the sort of people I could simply talk to. That you care. That no one’s experiences or struggles are too small or insignificant. Each of us matters.

Before I head off, I’ve enclosed some leftover egg yolks, which I thought you could use to make up your tempura paint. I made a pavlova yesterday and I hate wasting the left over yolks. By the way, I’ve attached my recipe for Betsy. I understand she made a lot of meringues in her time.

Best wishes,

Rowena

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Andrew Wyeth: Wind From the Sea.

A Letter From Andrew Wyeth

Dear Rowena,

Thank you so much for your letter and the egg yolks. I’ve already started on a painting. This one depicts Andy Warhol’s reaction when I received your letter and he missed out. Dad, ever out to compete and do things bigger, bolder, brighter has splashed oils all over the biggest canvas in stock. Mine is more subdued, but you’ll have to wait.

I was rather taken aback to read that you have lung troubles, my friend. You see, I had lung troubles from a very young age and even had one of my lungs removed and the other one wasn’t that good either. So, I was living on less than half a tank never expecting to grow up, make it through middle age and it was the most confusing things after being so terribly ill, to actually see most of my friends pass away before me like Autumn leaves.

So, my friend, there is hope for you yet.

Sorry, I forgot to thank you for the Pavlova recipe. Betsy loved it and everyone’s grateful for a change to meringues!

Best wishes,

Andrew.

By the way, I highly recommend Dan Schneider’s Video interview with three experts on Andrew Wyeth:

 

[1] http://www.u-s-history.com/pages/h3707.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374451/

https://curiator.com/art/andrew-wyeth/trodden-weed

 

A Spectacular Performance -Weekend Coffee Share: November 29.

This week, you’re invited on a virtual cafe crawl as we catch the train from Woy Woy to Sydney. Have breakfast in Glebe then drive two hour’s North via the Sydney Harbour Bridge to the Hunter Valley and then back down to Parramatta in Western Sydney and back home again. I assure you with this grueling schedule, you will require every single coffee and no doubt a few nature stops along the way.

The last week has been truly incredible.

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Before we get onto my daughter’s performance at School Spectacular, I just wanted to touch on a bit of a shadow which hung over things last week.

You see, my daughter was concerned about being caught up in a terrorist attack while she was in Sydney. Of course, being a kid, she didn’t express her concerns so succinctly. She simply asked where she could buy herself her own armour after seeing Police with bullet-proof vests on TV. I had a chat with her about it all, advising her on a few things she could do if she was in an emergency, which I outlined in this post: https://beyondtheflow.wordpress.com/2015/11/25/a-conversation-no-parent-should-have/

I have to admit that even though I knew the chances of her getting caught up in a terrorist attack were very unlikely, there was that remote possibility and there’s definitely that sense that trouble’s brewing at the moment but we don’t have that crystal ball.

Anyway, off she went and on Friday morning, I caught the train down to Sydney with our son and the rest of the local kids. It was only a four carriage train and it was packed, mostly with kids. As we were about to head over the Hawkesbury River Bridge, the lady next to me turns to me and says: “The guy next to me asked me to mind his bags while he went to the toilet but he hasn’t come back and he’s been awhile. I’ve got to get off. I can’t remember what he looked like. He might have been tanned but what does a terrorist look like anyway?”

Now, let me just put you right into my shoes. Here I am on a train packed with school kids including my son, my friends’ kids, friends of friends kids and the teachers who are like family to me and suddenly I’m in charge of potentially deadly situation. I’ve heard the announcement countless times while waiting on train platforms. If you see unattended luggage, please report it to station staff. This was exactly what they were talking about. At the same time, I looked at the large bag of Christmas presents, all beautifully wrapped in Christmas paper, wondering how they could possibly blow anyone up? How could Christmas presents ever be considered dangerous, even deadly? I noticed the intercom for the guard nearby and gave him 10 minutes to return. I was hoping that he’d been eating plenty of fibre and it wasn’t going to be a legitimate (but very extended) call of nature and I’d just caused pointless stress.

This was a lot to take onboard, especially after my chat with my daughter. I certainly didn’t expect to be thrown in the dead end like this. It was all supposed to be over-active imagination and now I’d somehow become embroiled in a plot, which was way too big for this little black duck.

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Illustrator Sarah Davis

Of course, the fact that I’d been to a three hour writing workshop with Australian Illustrator, Sarah Davies the day before, didn’t do much to appease my imagination. Suddenly, I’d become the reluctant hero but what if I made a mistake? It was a huge responsibility!!

Fortunately, the man returned and calm was restored. I could get back to reading my book. I was in the Quiet Carriage while the kids were in what could only be described as “the loud carriages”.

This was the second false alarm I’ve had recently. You might recall that the day before the Paris attacks, we had four Army Black Hawk helicopters flying just above the rooftops of our quiet beach-side town. They were circling around doing lap after lap after lap and while I wasn’t thinking about terrorists, having a very dangerous criminal on the loose wasn’t desirable either. But…that was also a false alarm.

However, we made it to Sydney rather uneventfully in the end and I was able to meet up with Miss before her grand performance.

 

Miss Spectacular

Miss Spectacular

Our daughter performed with her school choir at School Spectacular, an absolutely huge extravaganza held at the Sydney Entertainment Centre. They were part of a huge mass choir, a sea of white shirts made up of 1500 kids singing 30 songs and doing actions. They did 4 performances over two days and had a pretty intensive rehearsal schedule as well. I am surprised any of them were still upright by the end.

Finale- School Spectacular, Sydney Entertainment Centre.

Finale- School Spectacular, Sydney Entertainment Centre.

As we live in Greater Sydney and about 90 minutes away, Miss ended up staying across the road for almost a week with her friend’s grandmother. They were staying nearby 53 levels above the ground with the most incredible views of Sydney. She was so blessed and having her there made things so much easier for me with juggling transport.

Here I am enjoying the view from where Miss was staying.

Here I am enjoying the view from where Miss was staying.

While Miss was living the high life, I booked Geoff and I into the cheapest accommodation I could find which wasn’t above a pub. It wasn’t too bad but when we checked it out on Google Earth, we did notice some kind of Chinese massage parlor next door and Mum did warn me to make sure Geoff didn’t disappear during the night. The place had a pretty dodgy metal fire escape out the back and while comfortable,could well have been the sort of place a fugitive would hide out. Needless to say, there were no views from our hotel room. Indeed, I’m not even sure there was a window.

Hotel Carpark.

Hotel Carpark.

Saturday morning, we headed off to Glebe for breakfast. We had intended to have breakfast at Glebe Markets, where I used to hang out several lifetimes ago but we couldn’t find parking and after weaving out way through a series of dead end and one way streets, we found ourselves sitting at the first cafe we could find on St Johns Road and refueled with coffees, an almond croissant and omelette.

Rebel Red Shoes.

Rebel Red Shoes.

I should also point out that I was wearing really dodgy shoes and could barely walk. After breaking my foot last December, I’ve virtually spent the year in joggers but as we were going to my cousin’s wedding, I just couldn’t resist wearing my fave red shoes. They have wedge heels and being flat on the bottom, I can sort of walk in them but it’s definitely a case of “Ricketty Ro” and much of the time, I have to hold onto Geoff’s arm for dear life.

While I have nothing approaching a shoe fetish and wear sensible shoes almost all the time, sometimes I just want to step out there and feel a bit pretty, elegant, frivolous and NOT a matron or person living with  disability. Be myself. If you haven’t worked out the obvious by now. I am not a sensible person so why should I wear sensible shoes?

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Driving Across the Sydney Harbour Bridge.

 

Moving right along, we’re having our next coffee in Kurri Kurri in the Hunter Valley. Kurri Kurri is a coal-mining town on the gateway into the Hunter Valley, one of Australia’s most famous wine-producing regions. Like many regional towns looking to put themselves on the tourist map, the town has rebadged itself as “The Town of Murals”. Fifty murals, each with a hidden kookaburra, have been painted around town: http://www.kurrikurri.com/kurri-kurri-murals-project/

More Coffee...Kurri Kurri Tourist Information Centre.

More Coffee…Kurri Kurri Tourist Information Centre.

After over compensating for Sydney traffic congestion, we arrived at Kurri Kurri 2 hours before the wedding. Needing another caffeine hit (make that a strong one, please!) we stopped off at the Visitor’s Information Centre for great coffee and Caramel Slice before driving our town checking out the murals.

Red Bus Mural, Kurri Kurri.

Red Bus Mural, Kurri Kurri.

Next stop, was my cousin’s wedding. This was so exciting that my trigger-happy camera finger went into overdrive and I’m surprised I haven’t developed some form of RSI. The wedding and reception were beautifully intimate and included personal wishes from the groom’s grandparents, which just added a certain magic.

We drove home last night and had my uncle to stay. Made him pancakes for breakfast and must’ve totally exhausted myself as I didn’t photograph his visit at all.

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Drove down to Sydney to pick up the kids and head off to the Muscular Dystrophy NSW Annual Christmas Party, which is so generously put on by the staff at the Commonwealth Bank in Parramatta. This is a real extravaganza and the kids loved playing on the slot car rack and enjoyed the arrival of Santa and their presents. I was particularly thrilled to meet up with other members…friends I’ve made at an Adventure Camp I’ve attended. This is my community.

Mister with Santa

Mister with Santa

Right now, I’m ready to hang up my red shoes. “There’s no place like home” and a deep sleep!

I hope you’ve enjoyed our coffee and I look forward to topping up the caffeine levels when I pop over your way.

This has been part of the Weekend Coffee Share. Here’s the linky: http://www.inlinkz.com/new/view.php?id=585846

Love & Best wishes,

Rowena

PS Bilbo and Lady have made an an appearance at the Weekly Pet Share November Round-up. It’s a great post! https://hopethehappyhugger.wordpress.com/2015/11/30/weekly-pet-share-november-round-up/

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Touring HMAS Toowoomba, Garden Island, Sydney.

Seizing the day yet again, we drove down to Sydney on Saturday to tour HMAS Toowoomba, which was open to the public as a fundraiser for a group of children’s charities called Kids in Need. These charities included Muscular Dystrophy NSW, which assists me with managing my dermatomyositis, which is a neuro-muscular condition. Unlike Muscular Dystrophy, there is treatment for DM, although not always as effective as we’d like.

HMAS Toowoomba

HMAS Toowoomba

The Police were all waiting for Mister to turn up.

The Police were all waiting for Mister to turn up.

HMAS Toowoomba was docked at Garden Island, in Sydney Harbour. Garden Island is located to the north-east of the Sydney central business district and juts out into Port Jackson, immediately to the north of the suburb of Potts Point. Used for government and naval purposes since the earliest days of the colony of Sydney it was originally a completely detached island. It was joined to the Potts Point shoreline by major land reclamation work during World War II.

The kids at the entry to base.

The kids at the entry to base.

Garden Island is so-called because it was planted in 1788, in the first months of European settlement in Australia, to serve as a kitchen-garden by officers and crew of the First Fleet vessel HMS Sirius.[2] Initials carved into a sandstone rock on the site are believed to be the oldest colonial graffiti in Australia, comprising the letters “FM 1788,” representing Frederick Meredith who served as Sirius‍ ’​ steward.[3]

Frederick Meredith carved his initials into the rock at Garden Island in 1788, the year the First Fleet arrived in Sydney.

Frederick Meredith carved his initials into the rock at Garden Island in 1788, the year the First Fleet arrived in Sydney.

Which came first Qantas's  flying Kangaroo or the Navy's ocean hopper?

Which came first Qantas’s flying Kangaroo or the Navy’s ocean hopper?

HMAS Toowoomba (FFH 156) is the seventh Anzac class frigate of the Royal Australian Navy (RAN). She was laid down in 2002 by Tenix Defence Systems and commissioned in 2005.

In 2007, Toowoomba was deployed to the Persian Gulf as part of Operation Slipper. Her second deployment to the Middle East occurred during the second half of 2009. As part of this, she became the first RAN vessel to operate with the counter-piracy Combined Task Force 151.

If you look behind the kids, there is either the perfect location for hide & seek or time out.

If you look behind the kids, there is either the perfect location for hide & seek or time out.

 

Geoff testing out their breathing apparatis.

Geoff testing out their breathing apparatis.

The kids with "Oscar" their crash test dummy. He leads quite a rough life and has had 4 reincarnations in the last 12 months. Apparently, a shark got his hands.

The kids with “Oscar” their crash test dummy. He leads quite a rough life and has had 4 incarnations in the last 12 months. Apparently, a shark got his hands.

Missis now ready to put out any fires onboard.

Miss is now ready to put out any fires onboard.

 

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I was absolutely stoked at being able to make it up this ladder. A testimont to the power of prednisone and being in remission.

I was absolutely stoked at being able to make it up this ladder. A testimont to the power of prednisone and being in remission.

Standing under the "cannon", or whatever you call it.

Standing under the “cannon”, or whatever you call it.

Obviously, we had a fabulous day out and would liike to thank everyone who made it possible!!

xx Rowena

Xtreme Sports

If you were in a crowded room and you had to pick the person into xtreme sports, you’d never choose this wobbly woman with the walking stick but perhaps it’s my broken wings which turns even a humble walk into an agonising fall, resulting in an X-ray and a broken foot.

Being more at home in a cafe with my cappuccino and chocolate cake swimming in luscious sauce than bungy jumping or climbing Mt Everest in anything other than the metaphorical sense, I was plucked out of my chocolate sauce and landed smack bang in an adventure camp, with Muscular Dystrophy NSW in  2012. This was the beginning of the end.

I went down this water slide twice, after almost blowing my brains out the first time down when water blasted up my nose.

I went down this water slide twice, after almost blowing my brains out the first time down when water blasted up my nose.

For me, even being away from the known and predictable at home with my mobility issues wasn’t easy but being with people who knew and understood my limitations provided me with the safety net to launch myself way beyond my comfort zone and take on what really were xtreme challenges and yet, it just felt like going with the flow at the time.

Camel Riding. This was more challenging than expected.

Camel Riding. This was more challenging than expected.

This confidence was greatly aided, too, by the unofficial MDNSW Mantra “find a way”. Just because your disability or chronic health condition might prevent you from participating in an activity in a conventional way, it doesn’t mean it’s impossible.

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

Here I am riding the quad bike. Of all the activities, this one took me most out of my comfort zone.

Trying out the quicksand. It felt really weird gripping onto my leg and it took a bit of  assistance to get out.

Trying out the quicksand. It felt really weird gripping onto my leg and it took a bit of assistance to get out.

Sandboarding, Stockton Dunes.

Sandboarding, Stockton Dunes.

Going parasailing changed the colour of my day. It's the closest I've ever come to feeling as free as a bird.

Going parasailing changed the colour of my day. It’s the closest I’ve ever come to feeling as free as a bird.

Ready for Take Off!!

Ready for Take Off!!

A year later, I did a second adventure camp and this time, I was thrilled to have a go at surfing. This was quite a big deal riddled with challenges before you even considered trying to stand up. There was finding a wet suit big enough to fit and then managing to squeeze into it, which isn’t easy when you have muscle weakness. Then, there was carrying my board down to the beach. Actually, I did get assistance and later ended up being able to drag the thing along the beach. Not very cool but I was stoked!! Although I didn’t get anywhere near standing up, I did manage to start in a kneeling position. That was as good as it got but I was certainly living the dream!!

Not so cool...lugging my surfboard.

Not so cool…lugging my surfboard.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

From here my next big leap into the wild world of xtreme sports was skiing. This was where I was really taking myself way beyond my comfort zone!! There I was perched at the top of the Village 8, peering over the edge of what felt like an almighty precipice…a sheer cliff dropping down, down, down towards Perisher village, which looked like more than hundreds and thousands sprinkled on buttered bread. If I was ever swallowed up by my own fear, this was it and instead of gliding smoothly down the slopes, I soon fell over. Was gasping for breath. Indeed, I was consumed by pure panic. I mean just because you’re doing an xtreme sports that doesn’t mean you’re not afraid. It means you’re brave, courageous…or perhaps just a fool going where angels fear to tread.

You try wielding a paddle with a great big Border Collie in your face! Geoff said Bilbo was actually lying across him when he took Bilbo out.

You try wielding a paddle with a great big Border Collie in your face! Geoff said Bilbo was actually lying across him when he took Bilbo out.

Not content to stop there, I undertook what might have been the most xtreme sport of them all…going kayaking with two dogs on board. When I undertook all those activities with MDNSW, I had a solid, well-trained team behind me who could leap to my rescue, if necessary. Take it from me, it has been necessary… especially for the more xtreme challenge of walking along a footpath with all its inherent dangers. Anyway, when you’re trying to paddle with 35 kilos of terrified Border Collie quite literally in your face and 20 kilos of naughty Border Cavalier perched on the very edge of the kayak with her tail dangling in the water about to topple it any second, there is no safety net. We’re just going to fall. Fortunately, being an inter-tidal zone, it’s not very deep and despite the shenanigans of my fellow passengers, we managed to stay afloat. See more here: https://wordpress.com/post/35828219/6564/

However, there is another side to all these incredible achievements. You see, although I’ve been able to pull these off against all sorts of odds, I have struggled and indeed failed at times to manage the simple, every day stuff. Indeed, since I had chemo for 7 sessions over Christmas  2013-2014, my sense of time has been completely wiped out. I have no idea and now manage with the help of routines plastered on cupboard doors, alarm clocks, buzzers and indeed, multiple screw ups. It completely dumbfounds me how I can achieve the extraordinary and yet completely fail the ordinary. However, it’s unsolvable questions like this which ultimately fuel my writing and keep me off the streets.

xx Rowena

Miscellaneous Mutterings

Since I’ve been doing the Blogging A-Z April Challenge, I’ve developed some kind of additional neurosis…some kind of mutation, which has been completely overlooked by the DSM Manual, otherwise known as “the psychologists’ Bible”.

M is for Monkey

M is for Monkey

Every morning, no sooner than I’ve inhaled my kick-starting coffee, it all begins. I start jibber-jabbering away to myself and all sorts of words start cycling and recycling through my clunky head as I try to pick my word to go with the day’s letter. You see, I am now halfway through the Blogging A-Z April Challenge and with each passing day, the jibber-jabbering is only getting worse…the proverbial broken record.

Being a new recruit to the challenge, I didn’t realise until it all got underway that people generally write to a theme and turn it into quite a project. That’s right. This challenge goes way beyond simply reciting the alphabet and writing about “A is for apple”. My theme has ended up being “A few of my favourite things” and I’ve also been following the challenge on other blogs where I’ve been blown away by the amount of research involved and have learned so much!!

M is for Monster

M is for Monster

While I have written a list of topics for each letter, some days I’ve revisited it and changed my mind.

For some reason, trying to pick something for M today has had me muttering more than usual.

Mummy

Mummy

In a sense, M has to be Mummy, which I guess could also be M for Me. However, the trouble with writing about my journey as a Mum or about myself as “Mummy” is to come up with an angle that isn’t sickly sweet and sugar-coated or isn’t some never-ending whinge to end all whinges, leaving you all wondering why I ever had kids and thinking I don’t deserve them.

Next.

I did consider M for Manual, as in receiving a parenting manual when you give birth so you know what to do. After all, here in Australia, you have to sit a tough written test to get your Learner’s Permit before you can even start learning to drive a car Yet, when it comes to becoming a parent and leaving the hospital with your bundle of joy, there is no test. No licence required. You’re just left on your “pat malone” with what often turns out to be, quite a complex little bundle.

However, once I explored the manual concept further, I actually decided that I really didn’t want a manual or any kind of prescription telling me how to parent my kids. After all, being a bit of a free-thinking, creative type whose journey pretty much goes off road well beyond the road less traveled, I don’t want to create a pair of robots and I really don’t want to become a robot myself. I do try to have a routine during term time but come school holidays, I really do like to mix it up a bit, go away and explore something new but also just hang out. We all need to recharge a bit for another school term.

So, before I’d even written a word, I’d eliminated Mummy, motherhood, parenting manual and if you knew me in real time, you’d know that minimalist isn’t me. No, it’s definitely not me at all although I do appreciate those that fastidiously declutter their homes. They drop all sorts of fascinating treasures off at the op shop, which I snap and re-house. After all, treasure should never be homeless. We just need to get a bigger home or open a museum.

G'day Mate: a typical Aussie male greeting often used to disguise the fact they can't even remember their best friend's name.

G’day Mate: a typical Aussie male greeting often used to disguise the fact they can’t even remember their best friend’s name.

I had originally been intending to write about miracles, which ties into what became something of a life mission to “turn my mountain around”. You see, I have an auto-immune disease called dermatomyositis as well as a neurological condition, hydrocephalus, which both give me some mobility challenges. In 2012, our family went on our first trip to the snow and although the rest of the family was going skiing, I didn’t think I could do it. Instead, I bought a pair of snow boots and intended to photograph the snow instead. However, on arrival, we spotted the Paraolympic ski team, who were out zooming down the slopes on sit skis.  This sowed a seed of doubt and I started to wonder whether I, too, could ski. We had a chat with them and they introduced me to the Disabled Winter Sports Association. We couldn’t get organised in time for that trip but I set myself a goal for the following year to ski down the mountain and in effect, turn my mountain around. In what really was quite a miracle, although it also took a fairly large dose of courage and encouragement from the family and my ski instructor, I made it down the mountain and turned my mountain around going down instead of up the mountain.

M is for mountain From Alphabet by Paul Thurlby Published by Templar Publishing

M is for mountain From Alphabet by Paul Thurlby
Published by Templar Publishing

I was so excited and on such a high, that I forgot all about the laws of physics and that what goes up, must come down.

Before we’d even left the skifields, I developed the first signs of a chest infection, which despite preventative measures, turned into a life-threatening bout of pneumonia and my auto-immune disease flared up and was attacking my lungs. Before I knew it, my life was flashing before my eyes and instead of being on top of the world, I was having chemo and fighting for my life.

Of course, this totally flipped my mountain back around and in the process it turned dark, stormy and very foreboding.

This wasn’t how my story, the motivational book I was working towards, was supposed to end up. This wasn’t the plot I’d worked out. No, it was anything but. I put the book writing plans on hold. Indeed, I was so sick that I didn’t have a choice.

You can read about my ski challenge here: https://beyondtheflow.wordpress.com/2013/09/11/turning-my-mountain-around/

However, if you know anything about Joseph Campbell and the hero’s journey, you’ll know that any journey has it’s complications or challenges but that doesn’t mean that’s where the journey ends. No, instead, we’re supposed to tackle those complications and work them  out and ultimately reach that perfect happy ending. We just need to make sure we don’t give up half way before things start turning around and starting to work out. Moreover, once we reach that happy state we need to end that journey before another journey begins, taking us to a completely new destination with a whole new set of complications, challenges and rewards.

While at first thought, it might seem desirable to get rid of all the mountains in our way to make the road smooth, without these mountains, we would never be stretched and grow to take on tougher challenges. We’d never find out what we are made of. This would be a serious loss because, through my own journey, I’ve truly come to appreciate that each of us is truly capable of doing and being way more than we ever thought possible.

Indeed, each of us is a living, breathing human miracle.

We just need to believe.

It seems that I should have had a bit more faith in my miscellaneous mutterings. It’s been quite an interesting journey and I actually found a destination after all.

Indeed, it could even be motivational.

xx Rowena

PS Geoff was doing a few miscellaneous mutterings of his own today after driving the kids all the way to their Scout Camp and finding out our daughter;’s daypack had been left behind. Unfortunately, she’d put most of her essentials inside and so a very loving Dad is driving all the way back to Nelson Bay to drop it off again tomorrow. Mutter…mutter…mutter!

PPS: Bilbo, our Border Collie, has added his howls to the mutterings tonight. Somehow, he managed to fall in the swimming pool. I had a friend over for dinner and we heard a splash follow by a few more splashes and the poor boy was desperately trying to pull himself out. I am so relieved I was within ear shot. Poor Bilbo. He doesn’t even like to get his paws wet so this was really quite an ordeal!!