Tag Archives: gratitude

Weekend Coffee Share October 1, 2016.

Welcome to another Weekend Coffee Share.

How patient are you? I could get you a cuppa now or you can wait until the Mars Bar Slice has set. Or, you can be like the kids and I can cut you off a piece still dripping with melted chocolate. They were heading off to bed before it set and who can wait til tomorrow for Mars Bar Slice? Have you tried it? It is wickedly good.

I hope you’ve had a great week. What have you been up to? You know there are no secrets around here. Well, there might be a few but no one can dob us in, can they?!!

We have just got through our first week of school holidays and Geoff took the week off work. We are having a “staycation”. Well, three of us had a staycation, while we dispatched our son off to a three day beginner’s sailing course during the day. Next week, both kids will be doing a three day sailing course, despite my daughter’s concerns about Australian wildlife lurking under the waves. It doesn’t help that there’s been another shark attack at Ballina, near Byron Bay this week. To be honest, a shark would be pretty daft to swim around a noisy a group of kids. The din would be enough to send them swimming away to save their own sanity.

Tuesday was a huge day. I had a half-yearly check up with my lung specialist as well as lung function tests, which seem designed to make me cough and cough until I almost expire but then I’m free to go. The appointment and the tests went as expected…no better, no worse. See you in six months. That’s a good sign, considering where I was! Much to be thankful for as well!

After my appointments, we’d planned to go sailing at Palm Beach with my dad and the kids. However, while I was coughing my lungs out in the machine, the wind had built up steam as well and was gusting at 30 knots. There wasn’t even much discussion. The Captain had spoken. No sailing.

“Not happy, Jan!” (This commercial is really worth seeing. It’s hilarious! https://www.youtube.com/watch?v=2akt3P8ltLM )

Anyway, I compensated by heading out into my parents suburban jungle of a garden with my camera and photographing fallen camellias, a striking tree without any leaves and my feet walking through the forget-me-knots. I ended up lying down in the grass using my camera bag as a pillow and listening to the wind tinkling through  the leaves. I don’t know when I last lay down in the grass and watched the clouds pass by. Most of the time, we don’t have much grass in our garden at home and when we do, it can be quite a jungle.

I must do it more often. I rarely even sit down at the beach. I’m always walking…and throwing Bilbo has ball, of course. You try telling a Border Collie he’s had enough. He doesn’t know the meaning of enough…especially when it comes to chasing balls and food.

Anyway, after roaming through the garden, we drove up to Brooklyn on the Hawkesbury River on the way home and played explorers. Funny how we managed to find a fish & chips shop. We only ordered chips but then a couple of chickens and roosters wandered in, giving a different interpretation of “chicken & chips”. Actually, they were all rather fond of eating chips and it’s certainly a much better alternative than being served up alongside them on the plate. Indeed, you could say they were rather demanding…”Chippies!!!!”

You can read more about our Day Trip to Brooklyn

We usually eat pretty healthy food here but school holidays are a different story and surely I deserve a bit of time off as well, especially given the persistence of “The Cough”!

So, after picking our son up from sailing, we headed over to Avoca Beach and had fish and chips and a fisherman’s basket for dinner. Not sure I’m really pleased about finding this place because the seafood was exceptionally good. I want more and I can see myself sneaking back and making  devious detours. I wonder if I keep eating fish and chips, whether I’ll be able to swim like a fish? After all, people keep telling me anything’s possible when you put your mind to it. What do you think?

My husband thinks I’m crazy but he hasn’t had me locked up yet.

Rainbow Lorrikeet

Making the most of where I am. This photo was taken in our backyard…a Rainbow Lorrikeet in a bottlebrush tree. It could so easily be described as just “a bird in a tree”.

Inspiration hit hard last night so I’ve been scrambling away researching, writing and things are coming together well. Stay tuned and I’ll keep you posted but the story is based on my explorations in my parents’ garden. A simple theme but profound about the amazing things lurking right under our nose, while were longing for foreign fields. Making the most of the moment. With my health issues and having the kids and not being able to travel overseas, I am good at this. Blogging has really helped because it’s given me a greater appreciation for what I have here because it is exotic and amazing to someone over there.

I finally watched “Eat, Pray, Love” the movie this week. My husband wasn’t a huge fan and disappeared but Bilbo came and sat on my lap most of the way through it and didn’t complain. Mind you, that could have been because he was asleep.

It’s been a few years now since the book came out and my friends and I were reading it when our boys first started school. That was 7 years ago. We all had young kids and there was no way we could just take off and leave them behind for 12 months. However, I do remember drawing a line in the sand and deciding to explore local places and I’ve followed through on that right up to our day trip to Brooklyn this week. You don’t need a pot of gold or endless time to travel. Indeed, travelling and exploring are a mindset and it doesn’t really matter where you are because you’ll always be turning over fresh stones and looking for what’s lurking underneath.

I also remember refusing to accept mediocrity and that started with moving to a new cafe. We didn’t look back.

BTW, I almost forgot to mention that I joined in with 1000 Voices for Compassion this week, writing Compassion: It’s Complicated. No matter how much I try and help people, I’m forever making mistakes and letting people down and I think we all need to be more forgiving.

The clock here goes forward an hour sometime during the night and much to my horror, this is where we gain an hour to lose an hour. It’s never made any sense to me. By Monday morning, things usually make sense but you need to watch out if you work Sundays or head to Church. You can easily get caught out.

Anyway, it’s time for me to stop rambling and philosophising  and to click on the Publish button and get some sleep.

Hope you’ve had a great week and please share your news!

This has been another Weekend Coffee Share. You can click through to the Linky to read some other posts or to join in yourself.

Love & Blessings,

Rowena

 

 

 

 

 

 

The Wisdom of Gratitude? #1000speak

Don’t talk to me about gratitude and being thankful for adversity. That worn out line about “what doesn’t kill us makes us stronger” has worn painfully thin with me.

Not that I’m one to complain. Of course not, I’m thankful. Always sunny side-up no matter what!

 

the kids & I

The kids and I taken during my 7 week stint in hospital 2007. Mister was 3.5 and Miss was 18 months old.

I personally don’t see any reason to be grateful that my life has been hanging in the balance for the last 9 years and that my daughter has spent every single day of her life with a mother living on the brink of death…sometimes more imminently than others. My son was 2, so things for him weren’t much better. When I was hospitalised for 7 weeks when they were small, my son stopped cutting, writing and developed acute anxiety…just even driving on a bumpy road: “slow down, Mummy”.  When I was in hospital and he looked at me through his huge brown eyes and blond curls and asked “Mummy better?” a knife plunged straight through my heart. We didn’t know if, when or how I was going to get better. So, I said nothing.

I didn’t feel any gratitude at all. I was angry. Actually, angry doesn’t cut it. Enraged. So incredibly sad I could have drowned in my own tears and yet as I fought so hard to save my life, the pain was so intense and I just wanted to die. I know that mightn’t make a lot of sense but who does in a crisis?

chair Umina Beach

So often, I’ve felt like I’m being swept away by the tide and yet I’m still standing.

You hear parents talk about the loss of a child and the unfathomable grief. How a parent is meant to die before their child. However, that doesn’t include the parent dying, at least in my book, when your precious children are still babies and Mummy isn’t even perceived as a separate being but part of themselves. It doesn’t mean children growing up without any memories of Mummy at all and just a bunch of photographs and other people’s words.

That is absolute, pure anguish.

It goes way beyond the disappointment I felt not being able to kick the football to my then 2 year old son or my heartbreak when I was too weak to get out of my chair after breastfeeding our daughter to sleep and my husband would carry her into her cot. Or, when we all had our day time naps and I couldn’t immediately jump out of bed to comfort my crying child because my muscles were literally being eaten away. I couldn’t move.

This all culminated in a horrendous fall at home when I was lying face down on the concrete unable to get up at all and my daughter was screaming, my son was somewhere and my husband was working in the Sydney CBD two hours away. The muscles I needed to get up off the floor had atrophied or wasted away. I can’t describe what it feels like when your very own home becomes a life-threatening battlefield.

However, while I wasn’t grateful at the time, I’m grateful now.

I am very grateful that after months of medical tests and misdiagnosis that my uncle, a dermatologist, finally worked out what was wrong when he saw me at my cousin’s wedding and rang me afterwards and booked the necessary tests. I was hospitalised for 7 weeks 2 days later. I was so sick that he told me to have complete rest. My muscles were breaking down and I can’t quite remember whether all this placed me at risk of a heart attack or what but I was very, very ill…diagnosed with a very rare neuro-muscular auto-immune disease called dermatomyositis.

My uncle literally saved my life.

Secondly, while my diagnosis was nasty and I was told there was a risk I had cancer and I’d be on prednisone for a very long time, I had treatment. This wasn’t a death sentence, although my case was severe and also quite resistant to treatment.

However, as much as the dermatomyositis was resistant to treatment, my medical team has been eternally persistent. I have a rheumatologist. lung specialist and a gastroenterologist who work together to fight this disease. I’ve had transfusions of Immunoglobulin or IVIG for 5 years every 3 weeks. As the disease started to cause inflammation and fibrosis in my lungs, they blasted it with chemo. They have metaphorically held my hand when the disease has flared and things have looked exceptionally grim and they re-jigged my treatment, asked our questions and simply been there for us and done their best. Right through, they’ve known I had young kids and what it would mean to lose their mum and they’ve given our fight their all.

Another reason I was particularly angry when I was diagnosed with dermatomyositis was that this was my second, exceptionally rare life-threatening disease and I wasn’t even 40. I’d been diagnosed with hydrocephalus when I was 25, which may have been caused by a very difficult birth and I’d had brain surgery to insert a VP shunt. I’d lost a couple of years recovering from that at a point in my life when i was supposed to be fun…not thinking about dying.

However, my neurologist has always been equally supportive. I wasn’t alone.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007.

Speaking about not being alone, my family has been incredible. Not always perfect or handled things the way I would or would have liked but they’ve stood by me. My mother has put in an incredible effort with helping with our kids, supported by my Dad and brother as has Geoff’s sister and her husband. Friends have helped with minding the kids, lifts, talking them through some difficult moods and providing meals and encouragement. Churches have prayed for us and simply cared. We had support of Muscular Dystrophy NSW and the Myositis Association as well as local support agencies. Scouts has provided the kids with a space that’s fun and physically challenging away from the stress at home and this extra layer of community support and love is helping them to overcome adversity and feel strong in themselves. That they can stand on their own two feet. That they’ll be okay.

I consciously give thanks for each and every extra year I have because I already feel like I’ve exceeded my quota and that I’m well into extra time. Moreover, I’m doing pretty well at the moment.

Family shadow Byron Lighthouse Easter 2014

Our Family 2014- Byron Bay Lighthouse, Australia. The shadow is omnipresent but the darker the shadow, the brighter the light.

Just the fact that I’m still breathing is such a reason to give thanks but I’m not just breathing. I’m able to bring up my children. Be a wife to my husband, even if I am a liability. I can be a daughter to my parents and a somewhat active member of our local community…especially through photographing events. I also have what has become a very rare gift…time. I have always been very career focused and I haven’t been able to work since I had chemo 2 years ago. That would have destroyed the old me but now, in addition to my family, I have my blog, my writing, photography and so much more. All of this being very much proof that even when your world totally blows up and you feel totally decimated, you can salvage good things from the ashes and have so much to give thanks for.

So, even though I still live with dermatomyositis and am down to 59% lung capacity and live with incredibly uncertainty, I am still here.

The reason I am still here is due to medical research, science and my doctors. That even though there isn’t a cure for dermatomyositis, there is TREATMENT. Not just something that will give me an extra few months, and really little more than a delaying tactic…a matter of buying a little more, very precious time. I’ve been living with this for 9 years.

So while I am being thankful for the medical research which has kept me alive, I’d also ask you to think about those who currently don’t have effective treatment options and where funding for medical research is so desperately needed.

A friend of mine was diagnosed with Motor Neurone Disease a few years ago and was given 2-3 years to live and thank goodness is still with us. How I long to give her that magic pill which would instantly make for better, or at least, stop that disease in its tracks. The same with Muscular Dystrophy. These disease are both savage and while there have been improvements, so much more needs to be done and these diseases are so debilitating. Muscular Dystrophy also affects young people. They are the most courageous, inspirational young people I know but they are still young and treatment would make such a difference both for them and their families.

Heart Hands red heart

My son blew me away when he made a heart with his hands. His hands and arms were caked in green paint and I doctored the photo to produce this.

Another point of gratitude, last but not least, I am grateful for God’s guiding hand through all of this. My relationship with God hasn’t been easy through all of this. I have all the questions so many people also going through adversity have asked: “Why me?”, “Why does a loving God allow or perhaps even caused such suffering?”, “Why doesn’t he just pick us up and out of the road of disaster?” These questions are not easy to answer and I don’t believe there is one size fits all solution either. That God speaks to each of us differently, personally in a voice and message we can understand. I remember waking up one morning in hospital feeling so betrayed by God…absolutely rejected. It was like God focused all his wrath on little old me and pointed the almighty finger and ZAP…I was fried. However, it was a bit freaky for in the midst of my tirade with God, I heard this voice: “If it’s good enough for me, it’s good enough for you!”.

At least, I wasn’t being crucified. Things were looking up!

I’ve heard people with disabilties of chronic health issues say that they wouldn’t change their situation. That it’s part of who they are. However, I would do anything to get rid of the dermatomyositis and live without it’s omnipresent shadow.

In the meantime, I am grateful for all the love, encouragement and support I’ve had along the road. Thank you from the bottom of my heart.

Love & best wishes,

Rowena

 

 

 

 

When the Mermaids Are Calling…

I’m not quite sure what captured Lady’s attention but it certainly looks like the mermaids were calling!

This was taken on our morning beach walk. I’ve been trying to make the most of these gloriously sunny Autumn days. It’s been a bit chilly but after the storms a few weeks back, we’ve been particularly blessed!!

xx Rowena

Seal Performs at Sydney Opera House.

On Monday, I walked around the Sydney Opera House with my UK friend, Wally photographing him in front of the Sydney Harbour Bridge. Of course, these are two incredible, architectural icons which literally scream out: “Sydney”!!! You couldn’t be anywhere else.

Or, so I thought.

That was until we reached the end of Bennelong Point where the Opera House is located and came across barricades and a huge banner: “Please Do Not Feed the Seal”

Seal?

What seal?

A seal in Sydney?

By now, I should expect the unexpected but although I’ve lived in and around Sydney all of my life, this is the first time I’ve heard about a seal being in town. Well, that is in recent times.

Sydney's Celebrity Seal.

Sydney’s Celebrity Seal.

I walked up to get a closer look and sure enough there was a seal sprawled out at the bottom on the stairs soaking up the glorious Autumn sun.

What the?!!!

What was a seal doing in Sydney Harbour…especially sunning itself on the Opera House steps?

Was it lost?

Or, was it crossing off its bucket list? It, too, wanted to visit Sydney and check out the Bridge, the Opera House…or even sample our local cuisine?

I can understand wanting to travel. See the world. However, I’m sure there are better places to catch fish but each to their own. I just hope it doesn’t start glowing in the dark. I’ve heard there’s all sorts at the bottom of the Harbour…not to mention a few crooks and corrupt politicians from the 80s what with the “bottom of the Harbour” racket. All that drama resulted in a Royal Commission but that was long before this seal’s time.

Another possibility is that despite the banners asking us not to feed it, the seal has actually come to Sydney to sample our Aussie fish and chips. Not exactly a healthy choice and more than likely to make the poor seal sick but tell me who actually does read the fine print? Certainly not a seal!! I can’t help wondering whether it was heading for Doyle’s at the Beach, an iconic Sydney seafood restaurant, at nearby Watson’s Bay? Perhaps, the seal, like me, was directionally challenged and ended up at the Opera House by mistake? Took a wrong turn? Had trouble with its GPS? Palm Beach fish and chips shop might also have been on it’s list, although I’ve never seen a seal at Palm Beach.

However, thanks to the signage, there’s certainly no fish and chips for this seal. No! It has to fend for itself and I must say it’s looking nice and plump. It certainly isn’t wasting away!!

Another potential destination was Taronga Zoo. Perhaps, it fell for rumours something along the lines of a lifetime’s supply of free fish and thought it was worth a visit? I don’t know but we all know the game “Chinese whispers”. It doesn’t take long for the message to change and distort completely!!

Yes, that was quite a plausible explanation.

Hmm…thinking of Finding Nemo…did the seal come to Sydney looking for someone? Somehow, I doubt it. It’s not exactly moving around all that much.

Anyway, whatever brought the seal to Sydney, in between fishing trips, it is simply relaxing. Soaking up the glorious Autumn sunshine while the paparazzi snap away. It doesn’t even attempt to pose for the camera. No! It’s quite happy for you to photograph its butt and post it on Facebook and goodness knows where else. Doesn’t insist on a better perspective.

It even has its own Twitter account: @SassySydneySeal and hash tag #sydneyseal.

As Wally and I left the seal and the Opera House with it’s panoramic view across to the Bridge behind us, I couldn’t help but appreciate those unexpected surprises which somehow leap across our paths. That we should never over-plan or micro-manage our lives to the extent that we haven’t got time to take the detour, pause for five minutes and watch a seal sleeping beside Sydney Harbour or the golden light of the full moon rising illuminating the black, inky sea. We not only need to leave a little breathing space but also room to stretch out and even swing the metaphorical cat. Yet, although time shouldn’t be a luxury,it’s only when we value something that we truly appreciate its worth.

It’s always hard to get that balance right!

Have you come across something unexpected on your travels lately? Please share your stories in the comments.

xx Rowena

PS You can read more about our walk around the Opera House in my previous post here: https://beyondtheflow.wordpress.com/2015/05/12/sydney-opera-house-new-perspectives/

Accepting the Premio Dardos Award

I would like to accept the Premio Dardos Award and would like to thank Ruth from https://ruthspoetry.wordpress.com/ for the nomination.

Premio Dardos  means “Prize Darts” in Spanish. The award to given  for recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing.

As everyone always says, it was difficult to narrow down these nominations. I have also been nominated for the Inspirational Blogger Award so I have tried to distinguish between the two. It is not easy tracking blogs down in my reader so I have inevitably left blogs out which I love. I am intending to put some kind of address book together for my blogging activities soon. It’s hard to keep track of things once you follow more than a couple of blogs.

I am nominating the following blogs for this award and recommend you go and check them all out because they are all very well written blogs, which I love and also fit the parameters of the award:

Max the Dog: https://withinthekstreets.wordpress.com/

Dr Alun Withey… https://dralun.wordpress.com/

Jo Robinson : https://africolonialstories.wordpress.com/

Psychologistmimi: http://psychologistmimi.com/

Musings of Puppy Doc: http://phoebemd.com/

Behind the White Coat : https://doctorly.wordpress.com/

Rachel Mankowitz: https://rachelmankowitz.wordpress.com/

Such Small Hands: https://lilyellyn.wordpress.com/about/

Ali Isaac Storyteller: http://aliisaacstoryteller.com/

Sirena Tales: https://sirenatales.wordpress.com/

Back to Real Life: : https://mammaflybox.wordpress.com/

Bucket List Publications: http://bucketlistpublications.org/

Noelle Granger https://saylingaway.wordpress.com/

Just So You Know: https://trinabartlett.wordpress.com/

Chronic Conditions and Life Lessons: http://kimgosselinblog.com/
Yesterday and today: Merril’s historical musings : https://merrildsmith.wordpress.com/
premio-dardos

premio-dardos

dardos-rules

Congratulations to all the nominees. Well done!!

xx Rowena

Goodbye 2014- Byron Bay Lighthouse, Australia.

Goodbye 2014- Byron Bay Lighthouse, Australia.

Today, I’ve been going through my photos from 2014 and putting together an annual best of file, which has proved very enlightening. We have had so many amazing experiences such as sailing, skiing, going to the Sydney Writer’s Festival, trips to Palm Beach, wondering around Sydney’s Surry Hills. Yes, my health brought us stress but the chemo has worked and while there are still ups and downs as legendary Australian bushranger Ned Kelly said just before he went to the gallows: “Such is Life”.

So after much reflection and despite the very bad things that have happened, for us personally, we have pronounced 2014 a “jolly good year!”

Now, we launch into another New Year…2015 The UN Year of Light…with the usual optimism that a new year brings about a new beginning. That’s right. We all start off the new year with a perfectly clean slate without so much as a smudge.

Love & Blessings for the New Year,

Rowena, Geoff, Mister, Miss, Bilbo & Lady xxoo

PS The photo was “prepared earlier” at Byron Bay Lighthouse, Easter 2014.