Wear Red for Valentines

Happy Valentines Day.

A day for all things red and heart-shaped. A day for celebrating the mystery of love in all its shapes and forms. A day for flowers and chocolates, hugs and kisses, and walks down memory lane.

Hearts are amazing things. They flip at the sight of the beloved. They pour out in times of hardship and suffering. They race like crazy at the top of the hill. And in the busyness of our daily lives, our heart sits in the background, beating, pumping blood around our bodies, keeping us breathing, active, living. We don’t even need to think about it. It just keeps on working. Until one day it doesn’t.

Wear Red Day

Today is also Wear Red Day. It’s a day for remembering those who have died from heart disease and those who devote their lives to research, such as Heart Research Australia.  Wear Red Day is a cause that is close to our hearts. Sadly, we are intimately acquainted with heart disease.

When Dan and Bec were very young, only 6 and 4 years old, their Dad, Rob, died suddenly of a heart attack. One evening Bec said goodnight to her Dad and it was the last time she saw him alive. The next morning, Rob got up early to go swimming. He never came home. He was 39.

Having a desk job, Rob was concerned about his health and fitness, so had started swimming a few laps early in the morning at the local pool. While he was at the pool, he experienced pains in his chest and took himself up to the hospital. When the hospital called me, they reassured me that he looked fine and to just come when I could. There was no hurry.

It was Dan’s first week at school. After doing the morning routine, dropping Dan off at school and Bec off at a friend’s house, I went up to the hospital. Rob was sitting up, talking to the nurses and we chatted. They were waiting on some further results and then the doctor was going to discuss whether further treatment or lifestyle changes would be required. We never got that far.

I sat…waiting, wondering, praying

One minute Rob was fine. The next minute he had a fatal heart attack. It happened right in front of my eyes. At the time, I don’t think I quite understood what was happening which was probably a blessing in disguise. It was only much later that I realised I had watched him die. The nurse called for assistance, medical staff rushed in and I was ushered out of the room. I sat by myself in the waiting room. Waiting. Wondering. Praying.

Finally the doctor comes out and says he is sorry. There was nothing they could do. They were unable to revive Rob.

What happened next is somewhat blurred. I know that friends immediately dropped everything to be by my side. I know that my family, who all lived interstate, dropped everything to travel to QLD. I know that during that day I made numerous calls to people to tell them what had happened. And at some point I had to tell my four year old daughter that her Daddy wasn’t coming home.

We didn’t know that Rob had a heart condition.  There was a blockage in one of the arteries. Tests had shown that he had had a mild heart attack. Even the doctors admitted that Rob did not look like a man who was about to have a fatal heart attack. There is no blame to be cast. He was in the right place at the right time. If only we had known.

It turned our lives upside down

I lost my partner, my best friend, my soul mate. Dan and Bec lost their Dad. Family members lost a son, a brother, an uncle. I don’t know what Dan remembers or feels about it. He can’t tell me but he still recognises Rob’s photo and calls him Dad.

For Bec, it has been devastating. People who knew Rob, say Bec looks so much like him. And she does. She is like him in so many ways, even in ways she could never have possibly known. Bec is Rob all over again. And so her loss runs deep.

It is a lifelong loss and despite what people may say, it does not get better with time. Special days come and go – Christmas, Father’s Day, Birthdays, Anniversaries, Graduations – they are always bittersweet because he is not here. 

Hearts do heal but they are never the same. Our hearts are scarred with the pain of loss and grief. Life does go on, but we carry our loss with us wherever we go. And every year, when that day comes around again, we feel it in our bodies and in our souls. Even before we are conscious of the approaching date,  we feel it  – the heavy heart, the sadness, and then we remember – that day is here again.

Every time I hear a story of a sudden death of a loving partner and father, no matter the cause, I remember, and it causes a pang in my heart for the family left behind. We know the road that lies ahead. We were not the first and we won’t be the last. Not even the last in our own family.

Only a few months ago, Rob’s older brother, James, passed away suddenly. In circumstances eerily similar to that of Rob’s, a different heart condition, but still, it felt like a case of deja vu. For friends and family gathering at another funeral, the words “we’ve been here before” rang an all too familiar refrain.

 

 

So today, wear red. Wear a red shirt. Wear a red hat. Wear red shoes.

If you have lost someone to heart disease – wear red.

If you know someone living with heart disease – wear red.

For all the people in your life who you love dearly – wear red.

Wear red to keep hearts beating. 

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An Extrovert in the House

Do you like time to yourself? Do you like to have time to think through problems or decisions before responding? Do you prefer communicating through writing rather than talking?

If you have answered yes to all of the above, than most likely you are an introvert, just like Bec and I. We like peace and quiet. We like to read. We like to spend time sitting quietly, thinking, reflecting, reading, writing and so on.

Introverts often get a bad rap. We can be accused of being anti-social and of not being a team player. But it’s simply not true. We do enjoy being with people, but we find it just a bit tiring. For us, a little bit of socialising goes a long way.

I really dislike the way the word “loneliness” is attached to introverts. Just because we have a smaller circle of friends and often prefer to do some things on our own, doesn’t mean that we are lonely.  It’s not loneliness, it’s solitude and solitude is very important for introverts. It’s the way we recharge our batteries so that we are ready to cope with the world outside – the very noisy, busy, extroverted world.

Dan, on the other hand, is the extrovert in the house. He is very social. He loves being  and doing things with people. He absolutely loves his time at Yellow Bridge during the week and his weekend activities with the Boys Group and support workers. At Yellow Bridge Dan is noted for his friendliness and helpfulness. Every morning he goes around and shakes every client’s hand as they arrive. And when someone new arrives, Dan is the first to make them feel welcome.

Dan is also very active. He likes to be out and about doing things. He doesn’t like sitting quietly. I think he finds that very boring, so his week is filled with activities like Gym, swimming, bowling and bushwalking. And when he has respite on the weekends, as soon as the support worker arrives, Dan is out the door raring to go. He doesn’t even have time to say bye to Mum.

Although Dan’s autism does present some challenges, there are some aspects of autism that don’t seem to be a problem for him. Over time Dan has become a lot more flexible and is able to roll with changes in routine and he doesn’t appear to get anxious about things. He always seems to be happy and outgoing, which does make life a lot easier in some ways.

However, one extrovert in the house doesn’t always go so well with two introverts.

Dan doesn’t like to do things by himself. He finds it very difficult to occupy himself. One of Dan’s favourite activities is Lego and he is very good at following the instructions, finding the right pieces and putting it all together. But he likes to have someone sitting right next to him while he does it. If I set Dan up with some Lego or some other activity like a puzzle or his word book and leave him to do it himself, he will deliberately do it all silly and want me to fix it. Even though the only thing I need to do is turn the pages of the instruction book, he likes me (or somebody else) just to be there. He likes the social aspect of doing an activity together.

Despite being relatively non-verbal, Dan is quite vocal. He loves to sing. Loudly. At any time of the day or night. Continuously. Even though he struggles to string three words together, he can sing a whole song. The words might be a bit difficult to pick up but you can always tell what song he is singing by the tune. At other times, Dan will get fixed on one little phrase which we will hear over and over and over again. For two people who like their peace and quiet, it can get very tiring.

Now Dan has always loved singing and being active and I had never really thought about him as an extrovert until Bec made the connection just recently. We respect Dan’s needs for social interaction and we really do love that he enjoys music and singing so much, it’s just that sometimes it gets a little too much. Sometimes we just need a break. We need some quiet time to recharge our batteries.

Being a carer is tiring. Supporting Dan in his everyday needs just goes on and on. I know it’s not his fault. It’s just the way he is, but it still gets exhausting. The difference between Dan’s extroversion and our introversion just adds another layer to the everyday challenges of life. It’s tricky trying to balance the differing needs of all family members. That’s why respite is so important. Respite is not just an optional extra for carers; it’s essential for our health and well-being. As much as we love our extrovert in the house, we look forward to the time on our own. Dan gets to go out and have fun. We get peace and quiet. Everybody wins.

 

 

 

 

 

 

 

2019: Looking Forward

 

Another year has come and gone. I don’t know where 2018 went. It seems like I had just settled into 2018, remembering to write an 8 instead of a 7, and suddenly it’s the end of the year. How did that happen? The older we get, the faster the years seem to zoom past. It really doesn’t seem quite fair, somehow. But as they say, time waits for no one. As we watch 2018 disappear in the rear vision mirror,  2019 roars into view. What will this new year bring? Will some pleasant surprises come our way? Will unexpected challenges throw a curve ball into our plans? Perhaps you have already started to make some New Year resolutions.

  I am not really one for making New Year resolutions. Despite our best of intentions, very few of us actually manage to keep our New Year resolutions. It’s so easy to get carried away by the buzz of the New Year moment, gazing optimistically into the future through a merry alcohol infused haze and make rash resolutions with almost no forethought and maybe even less foresight.  Resolutions tend to be all or nothing. You either keep them, or you don’t. There’s often no middle ground. When we fail to keep our resolutions – and you can bet that we will, because after all, we’re human – our failure can be compounded with feelings of resignation, hopelessness or even depression. It’s a win or lose situation, and most of the time, we will lose. We get tired or busy or distracted, and before you know it, our good intentions have hit the dust. It’s all over, red rover.

I think goal setting is a much better way of initiating change in our lives, especially change that is important for our health and well being. When we set a goal, we are setting a target to aim for. It’s not something we can achieve overnight, but something that can be achieved slowly, over the course of time. Slow change is often easier to implement and maintain in the long run. Sometimes there will be setbacks. Sometimes it might feel like one step forward and three steps backwards or vice versa, but on the whole, as we look back, hopefully we will see how far we have come.

Setting goals requires a bit of forethought.  Resolutions often fail because we haven’t thought about why these things are an issue, why we have failed to keep them in the past, what motivates us to change and what are the likely challenges we will face. When we set goals, these are the very questions we need to ask ourselves so that we can map out a plan to strive for our goal. This is where we get down to the nitty-gritty of how we will achieve our goal.

We might break our goal down into a series of steps. This is something I learnt when Dan was very young and we were trying to help him learn basic skills for school and life. If necessary, we can even break down each step into mini-steps – baby steps. Baby steps are so much easier to achieve than giant leaps. And if we get to the end of the year and we haven’t quite met the goal, you know what, it doesn’t matter. The goal is still there. We can see the progress we’ve made. We can just keep going. Besides, sometimes the journey towards the goal can end up being just as important as actually reaching the goal.

 

During this last week my inbox has been flooded with posts reviewing the year, celebrating achievements and setting challenges for the next year. And it seems I’m not alone in preferring to think in terms of setting achievable goals rather than making rash resolutions. Beth at Life…Take 2 and Itinerary Planner at Travel Itineraries, just to mention two, also talk about goals rather than resolutions. Funny how we can be on the same page and thinking the same thing at the same time.

Our goals don’t just have to be about achieving things like weight loss or increased fitness or career promotions. While these are all worthy goals, as we head into the new year we might also like to think about more family and community focused goals, like having more family time, showing kindness to strangers and patience to shop assistants, respect to our colleagues and forgiveness to family. Life isn’t always about being faster, stronger, higher but also about being kinder, friendlier, happier….

2018 has been a year of ups and downs. We lost a dear friend to cancer on Easter Sunday and a family member passed away suddenly barely two months ago. We have had to deal with the stress of moving house and transition to university life. But there has also been the joy of Dan’s life growing to include new opportunities and the satisfaction of achieving numerous small goals.

Standing on the eve of 2019, we continue to look forward to whatever joys and challenges the new year will bring. As we set our goals for the next 12 months, we hope that 2019 is kind to you and that you experience the love, joy and hope of life in abundance.

Happy New Year!

Love, Joy and Peace

 

It’s Christmas. The season of twinkling lights, festive food, Carols by Candlelight and happy families. We’ve cleaned the house, decorated the tree, wrapped gifts for a never-ending list of family and friends, and slaved in the kitchen. Christmas is that magical time of the year when families get together to celebrate love, joy and peace.

And then I see headlines about

• dreading Christmas
• how to survive Christmas Day
• the lonely who have no place to go

Dread, survival and loneliness doesn’t sound much like the Christmas spirit. It fills me with sadness and makes me wonder what we have done to Christmas that it is no longer a time to look forward to with excitement, longing and hope. How has love, joy and peace become fear, stress and isolation?

Family life is messy. The people who are closest to us and love us the most, are also the people who remember our every indiscretion, carry a multiple of grudges and know how to push our buttons. Well intentioned concern often comes out as criticism and judgement. Much as we love our families, sometimes we can also dread spending extended time with them.

Love is supposed to be at the heart of the family, but we all know that love and family life are hard work. My Macquarie Dictionary defines love as ” a strong or passionate affection for another person.” Affection? I don’t know about you, but the word affection seems a bit weak to me. I would describe love as one of the most powerful forces in the world. It is also one of the most demanding. Ask any parent.

Love is hard work at the best of times. It is even harder when we are tired and stressed. I wonder sometimes, if we make Christmas harder for ourselves than we need to. In our pursuit of the perfect gift, the perfect tree, the perfect roast turkey, the perfect Christmas, are we burdening ourselves with unnecessary expectations that end up making us tired and stressed long before the family even arrives. Are we forgetting the whole reason we get together in the first place – to celebrate the joy, love and peace of Christmas.

For some of my friends and family, Christmas will be hard this year. It will be their first Christmas without a loved one. It will be sad, but together they will laugh and cry, love and grieve. For them, Christmas will be about being – being together, being happy, being sad, being present in their love and grief.

For us, Christmas this year will just be the four of us. The rest of my family will not be getting together – at least, not physically. It is always a challenge for my family to be together in the same place, at the same time. We are scattered across Australia, from Perth in the West, Adelaide in the South, the Central Coast in the East, to Toowoomba in QLD. Even though we might exchange gifts via the postal service and celebrate our joy over the phone,  we will still be together in heart and mind, for not even space and time can separate us from the love of our family.

Every family is different. Some families will be grieving. Some families will be far apart. Some families have special needs. There is no one way to celebrate Christmas. Every family needs to be free to find the way that works for them, to find the way that restores love, joy and peace to the Christmas celebration. If you are a family with special needs, or even if you are not, Kirsty from Positive Special Needs Parenting has some excellent suggestions about how to make the Christmas celebration right for your family. You can read it here.

In the busyness and stress of the coming celebration, I hope you find some time to be present and to experience the love, joy and peace of the Christmas Season.

Wishing you a Joyful Christmas

 

Christmas by Candlelight

The stores are packed with tinsel, glitter encrusted decorations and a vast array of delicious sweet foodstuffs. Carols reverberate around the shopping centre, while hoards of shoppers hustle and bustle, laden with bags of gift-wrapped surprises. If you venture out at night, the city streets are illuminated with never-ending strings of blinking lights. And if you dare to switch on the television, you will be bombarded with all the things you need to have the perfect family celebration. It’s that time of year again.

Of course, we are filled with the seasonal spirit too.  We like to keep things simple. Bec has erected and elegantly decorated our tree with a collection of ornaments and strands of silver and gold garlands. We have a few crafted home decor items that announce the message of love, joy and peace and count down the days. Bec enjoys spending time in the kitchen baking and whizzing up beautiful sweet things and Dan starts singing his favourite Christmas Carols. We especially enjoy planning the table decoration and candles are always a main feature.

Candles play an important part in many family celebrations. It is hard to imagine a birthday party without a candle for every year atop the cake. Candles often feature as table decorations at wedding receptions and what would Valentines Day be without a romantic candle-lit dinner for two. And sometimes we use them to remember those we love who are no longer with us. As we watch the flame flicker, the warm glow quietens our spirit and creates a feeling of peace and love.

This year we have used candles to create an Advent wreath. It works just like an Advent calendar, counting down the weeks to Christmas Day. Starting four weeks before Christmas, we light one candle in the first week, two candles in the second week and so on, until finally there will be four red candles lit and one white candle for Christmas Day. Last year we experimented with some floating candles. I bought some special little glass floating tea light holders and set them in a large glass bowl filled with water. For this Christmas Bec has come up with a similar idea using glass jars, artificial flowers, and floating tea lights. It looks very effective and quite appropriate for an Australian Christmas.

 

Our summer climate influences the way we celebrate Christmas here in Australia.  Families are increasingly more likely to gather in the outdoors, around a BBQ or even on the beach. And it is no doubt that our pleasant summer evenings played a significant part in creating what is now an established Christmas tradition – Carols by Candlelight. For as long as I can remember, people have gathered on Christmas Eve, in parks and gardens, on picnic rugs and folding chairs, to join in singing carols under a starry sky.  However I didn’t know, until I went digging, that Carols by Candlelight actually began in Australia. The first major event was held in Melbourne in 1938 and attracted a crowd of around 10,000 people. Today,  people all over Australia and even across the world, attend Carols by Candlelight events in many major cities and small country towns.

I wonder if our affection for candles is a response to our modern and technological world.  In our modern homes, with sharp clean lines and harsh electric light at the flick of a switch, sweetly scented candles help to soften the edges and create a warm and inviting atmosphere. Although candles are no longer a necessity for us, except in black-outs, their popularity has led to little cottage industries and whole shops completely devoted to candles and their associated accessories.

Over the years I have managed to collect quite an assortment of candles. Unlike the candles of ancient times, these are all shapes, sizes and colours with a variety of different aromas, but I don’t really use them as much as I could. Lighting the Advent Wreath each night for dinner has inspired us to make candles a regular part of our life. Dan and Bec are getting a bit past the time for birthday candles on their cakes, but we could create a special candle table decoration just for birthdays. There is no reason why we couldn’t light candles every night for dinner. In these days of short attentions and screen addictions, it could help to create a more family atmosphere for our evening meals.

I have already started to make candles part of my morning routine. I like to have some quiet time before Dan gets up. Once Dan is up and out of bed, nobody gets any quiet time.  I make myself a cup of coffee, light a candle and spend some time reading or meditating. Some times I might listen to some of my favourite music – something quiet, or I might do a bit of writing – whatever comes to mind. At present I am working my way through a number of half-burned candles, but I have a few special ones waiting, especially two that Bec gave me once for a birthday, labelled “Winter is Coming” and “Bag End.” Candles even come in literary aromas these days.

Hmm, any guesses to the literary inspirations?

We found these in a candle shop in the historic town of Hahndorf, South Australia.

This one looks far too beautiful to even use!

I think it is extraordinary, that in our time of rapid technological progress, something so simple, so ancient, as an old-fashioned candle, can be a thing of beauty that adds meaning to our celebrations and joy to our every day life.

Will you be lighting a candle this Christmas?

 

 

 

 

 

 

 

 

 

 

Caring for the Carer

Life is a difficult balancing act. Most of us are trying to juggle work and family commitments while also trying to maintain our own well-being and sanity. For the most part, it works, even if sometimes it’s a mad scramble and there are a few near-misses. Occasionally though, it doesn’t work and everything falls in a screaming heap. Including ourselves. 

If you’re a carer of someone with special needs, the balancing act is often a lot more precarious. The demands on a carer can be relentless and overwhelming. And it is the carer’s needs who always come a very poor last.

Carers Get Tired

Caring is a tiring job. It just goes on and on and on. My son Dan is a great kid, or should I say, young man. He is always happy and helpful, but he also has a never-ending source of energy. Even though Dan is nearly 22, in some ways it is like caring for a pre-schooler. I’m not saying that Dan is a pre-schooler, it’s just that he requires supervision round the clock. I can’t just pop down to the shops and leave Dan at home alone. He is either in care or he’s with me. And while Dan continues to live at home, that is how things will continue to be.

Dan requires constant prompting for every little task, even though he usually knows exactly what to do. This does get rather tiring because it feels like you are trapped in Ground Hog Day. It’s just the same day over and over and over again. And since Dan needs to be prompted to use the bathroom, there are no sleep-ins. Not if I want a dry bed.

Dan loves to be out among people, but his boundless energy and long lanky legs make it a very exhausting exercise. Exhausting for me, that is. Dan has no sense of road safety, so I need to hold on to him, just to keep him safe. Unfortunately, Dan loves to travel at maximum speed. Walking slowly is just not on his radar. I think he would make an excellent physical trainer.

 

Carers Get Run-down

As carers, we are always told to “look after yourself” but no one really tells you how this actually works in practice. We know that we should get plenty of sleep and exercise, eat a healthy diet and enjoy some down time. But keeping up with all the demands of caring, plus everything else the world likes to throw at us, means that the things we know we should do, get pushed aside.

Getting enough sleep is a real challenge, especially when Dan feels the need to break out in song in the middle of the night or early hours of the morning. I know regular exercise is important, but it’s hard to fit it in when there are already so many things I’m trying to squeeze in during his time in care. Now and then I  get enthused about planning an interesting and healthy menu, but at the end of the day I’m tired, the fridge always seems to be empty (I don’t know where it all goes) and I actually hate cooking.

We often don’t even notice that we are getting run-down. So often we are just concentrating on getting through the day, doing all the things we have to do. But when we are constantly giving out, without being replenished, eventually we just run out of steam.

Carers Get Sick

Carers are pretty tough. We can survive on little sleep and we get used to putting ourselves last. And when people ask us how we are, we always say we’re ok – even when we’re probably not. But the thing is, we have just done this for so long that we don’t know any different. We have felt tired for so long, we can’t remember how it feels to not be tired. We have put ourselves last for so long, we feel guilty indulging in a few minutes of down time when there is so much to do. We actually don’t recognise that we are not ok. This is our normal.

But Carers can only run on empty for so long – and then we get sick. And what happens to all the things carers usually do? Well, either someone else picks up the slack or we just focus on what is absolutely essential or things just don’t get done. And then we feel bad for all the things we’re not doing because we’re tired and run-down and sick. It can be a vicious circle.

Things have been a bit quiet here of late.

I got tired. I got run-down. I got sick.

Getting sick is our body’s way of telling us we need to stop. We need to prioritise. We need to take care of ourselves. We need to learn to say – no.

It all sounds very easy but it’s so hard to do. But you can help.

Everybody knows someone who is caring for a person with special needs. It doesn’t have to be a child. It could be a parent with dementia. It could be a partner with a terminal illness. The next time you feel moved to say, “take care of yourself”, you might like to think about how you can offer some practical help – a few hours respite, mowing the lawn or doing some grocery shopping. Every little bit helps.

Carers need to be taken care of too.

Big Red Bash #2: The Adventure Way

On the first day of our outback adventure, Dan woke up very excited. He knew what was happening and he couldn’t wait to get going. As soon as breakfast was out of the way, he was in the car, quick as a flash, sitting in the back with a huge grin across his face. Unfortunately, Bec couldn’t come with us this time as the Bash clashed with the beginning of semester two. 

Fine drizzling rain made a wet start for our trip, but we were heading west, so the weather was likely to improve. To make our trip more interesting, we were going to travel to Birdsville via the Adventure Way which follows the old Cobb and Co route through St George, Cunnamulla and Thargomindah to Innamincka, which is just over the border in South Australia. In the old days it would have been a bit of an adventure travelling  in a horse-drawn carriage on roads that were little more than a track. Today though, it’s a sealed road almost all the way to the state border, so it was an easy drive.

 

On the first day we dropped into the Riversands Winery at St George. Wine tasting is one of my favourite activities when holidaying and Riversands is always a regular stall at the country shows west of Toowoomba. I’ve had Riversands wines before, but this was the first time I have had the opportunity to visit their winery. Driving in past rows of grape vines, we noticed how thick the trunks were and assumed they must be very old vines. However, not so. Those vines were table grapes which have thicker trunks than the wine varieties. One of the unique things about Riversands, is the range of pottery flagons shaped as boots, quart pots and bells. We have a set of their pottery boots which were moulded on the boxing boots of Fred Brophy, an Australian boxer who toured throughout regional QLD with his tent boxing troupe.

 

 We spent our first night at the Cunnamulla Tourist Park. It was going to be our only camp with power, and a shower, for quite a while (or so we thought). As the park manager was directing us to our camp site, a large kangaroo provided some excitement as it bounded through the park, dodging caravans and tents and almost collecting a lady on it’s way through! According to the park manager, it’s a regular occurrence.  

As we continued along The Adventure Way, we stopped at a town called Thargomindah which has an interesting place in Australian history. When we called into the Information centre, I noticed a lot of souvenirs with the words:

London

Paris

     Thargomindah

 What could Thargomindah possibly have in common with London and Paris? Well, London was the first city to use hydro-electricity to power electric street lighting, followed by Paris, and then….in 1898 Thargomindah was the third place in the world, and the first in Australia, to do the same. I think that’s an impressive achievement for a small outback Queensland town.

After Thargomindah, we took a little detour off the main highway to visit a town called Noccundra. It’s not really much of a town anymore. The only building still standing is the pub which is still in operation. So, of course, we just had to call in for a drink.

We had originally planned to spend our second night at Innamincka, just across the QLD-SA border. Innamincka has a place in Australian history due to the sad tale of the explorers Burke and Wills. I had wanted to visit Burke’s grave which is located at Innamincka, however recent rain meant the road was closed – oh well. Innamincka is one of those towns with a very low population; except during Winter when everyone heads to the outback. So there were 4WDs everywhere, lining up for fuel and stocking up with supplies. As you can imagine, the Innamincka store does a roaring trade at this time of the year. Some people, like us, had travelled from the east. Some had come from the west over the Simpson Desert and others had come up from the south on the Strezlecki Track.  Since we had actually made better time than we expected, we headed back out of Innamincka to camp at the Dig Tree for the night. Sitting on the bank of Cooper Creek, the Dig Tree has an important part in the Burke and Wills story, but that will have to wait for another day.     

Big Red Bash #1: Camping in the Outback

I love camping. There’s something restorative about getting away from the rat race and heading for the great outdoors. Camping is a family tradition. I have many happy childhood memories of family camping trips. Our family first started out in a caravan, and then, when we outgrew the caravan, we graduated to a tent. At first we explored the popular scenic and historic tourist routes of Australia, but then we started to venture out into the National Parks and the Outback. Away from the city you can actually see the stars, toast marshmallows over a campfire and observe the native fauna in their natural habitat. It’s certainly an experience I wanted my own children to have too.

Dan and Bec love camping as well. Our first camping trips were in a purple and green dome tent, and when we outgrew that, we graduated to a camper trailer. Every year while visiting family in QLD, we would take a few days out to go camping in one of the National Parks close by. Before Dan started school we took a few weeks exploring the south-west corner of Western Australia. We tended to gravitate to the natural settings – the beach, the mountains or the bush, but we had never gone into the real outback. A few weeks ago, that all changed.

the world’s most remote music festival

In early July, Paul, Dan and I hooked up the camper trailer and started out on a trip to the 2018 Big Red Bash. The Big Red Bash, also called the Bash or the BRB, is the world’s most remote music festival. It is held at Big Red, a 40 metre sand dune west of Birdsville, QLD. The Bash began in 2013 and has continued to grow each year. It’s a really great celebration of Australian country and rock music and raises money for the Royal Flying Doctor Service. When we saw this year’s line up – The Angels, Hoodoo Gurus, John Farnham (just to name a few) – we knew we just had to go.

We have been camping before, but this trip was going to pose a few challenges. First of all, it would be the longest camping trip we had taken for quite some time. After 10 days together in a car and camper trailer, would we still like each other? Would we all make it back in one piece?

Big Red Bash Campsite

 

Secondly, camping in the outback means: no power, no running water, no supermarkets. Camping without power and running water isn’t really an issue. We’ve done it before – just not for 10 days. We were also going to an area that was kind of remote and an environment known for its harsh conditions. It would require careful planning and carrying certain items in case of emergency. On the bright side, however; we were not going to be alone. Approximately 9,000 other people from all around Australia would also be heading to the same location.

Thirdly, we were going to be covering some big distances. By the time we would get back home we would have travelled over 3,000 km. However, as you travel west, the towns get fewer and much further apart. Apart from our first night and the days out at Big Red, our itinerary in between was a little hazy. A reasonable part of our trip would be on unsealed roads and road conditions can change quite quickly if the weather turns wet. So we would have to be flexible and play it a bit by ear. We were on holiday, after all.

Needless to say, we made it back safely, still all in one piece and still liking each other. We had no major incidents, met some great people along the way and had a fantastic time. Camping in the Australian outback is not something to be embarked on without due care and thought, but the stark beauty and harshness of the landscape inspires awe and respect. 

As you can probably tell from the title, this is just the first part of a series on our Big Red Bash experience. It’s the first time I have done a series so I hope you enjoy reading about our adventure in the outback and be encouraged to explore the great outdoors in your own part of the world.   

The Carer’s Road

Every day is a journey,

and the journey itself is home.

Matsuo Basho

 From the moment we are born, a path stretches out before us. We don’t know where it will lead. We just begin, one step at a time.

Sometimes the way is a smooth, well-worn path and at other times it feels like we are cutting a path through rugged terrain. The road meanders, curving left and right, every turn revealing a new mystery or challenge. Sometimes we coast down hill only to struggle to reach the top of the next rise.

The carer’s road is a life long journey. We didn’t set out to be carers, but here we are, on a road that has contained curves, u-turns and uphill challenges. As the years go by, though, it can feel like we are caught on a treadmill. The days run into each other, a monotonous streak of repetition and predictability, with no reprieve in sight.

Life with Dan can be a bit like that. Every morning the routine is the same – the same steps, the same prompts, the same responses. Dan likes routine. Routine is good. It keeps everything ticking along like clockwork. Sudden changes in routine can cause all sorts of trouble when you’re on the spectrum. But it does feel like you will keep on repeating the same day, forever.

When you are a carer, it can be tempting to feel that your life is on hold, that you are stuck on the bench watching, while life is passing you by. You see others moving on to the next stage in their life, breaking through glass ceilings, travelling to far-flung places, seeing the sights of the world and climbing Mount Everest. Meanwhile, we are still giving the same round the clock care and supervision. We can feel that life is out there somewhere, in the distance, for others to experience, and always out of our reach.

But this is not true.

Sure, the carer’s road looks different. Different can be good. It is filled with everyday miracles, outstanding achievements and more spills and thrills than a rollercoaster.

I don’t need to break through glass ceilings. I am quite regularly sweeping up broken glass after Dan has precariously balanced the crockery on the edge of the shelf.

Exif_JPEG_PICTURE

Exif_JPEG_PICTURE

I don’t need to see the leaning tower of Pisa. Over the years we have seen many of the towers of Dan, some leaning, some standing perfectly straight, each one a master of architecture.

I don’t need to climb Mount Everest. After many years, we finally made it to the top of the toilet training mountain. It was a long haul but the achievement was exhilarating.

Life is not passing us by.

This is our life and we are living it every day.

 

The Journey into Autism

The word ‘journey’ can conjure a variety of images in our minds. Perhaps you imagine packing your bags and catching a plane for that once in a lifetime trip around the world. Or perhaps you think about stepping into the great unknown, travelling down an unfamiliar track, not knowing where you will spend the night or who you will meet. Throughout our life we will embark on many journeys, some short, some long, some never ending. Sometimes we know the final destination and sometimes we can end up somewhere completely unexpected. But every journey begins with that first step.

The dictionary defines journey as an act of travelling from one place to another.  It is also defined as a long and often difficult process of personal change and development. I think this second meaning sums up the journey into the world of autism.

From the moment I knew I was pregnant with Dan, I knew he was a boy. I don’t know why or how I knew. I just did. Like all parents, we held hopes and dreams for our child. We had so many questions. Who would he take after?  Who would he look like? Who would he become? As first time parents we didn’t really know what to expect, but we expected our parenting journey would be pretty similar to those we saw around us. I didn’t know then, how different our journey would actually be.

Dan arrived a little earlier than expected into the world. It wasn’t exactly smooth sailing, but we got there. It’s difficult to describe that moment when you hold your child for the first time. Your heart is filled with more emotion than you ever thought possible. All the pain is pushed aside as you gaze upon this little person, overwhelmed with the rush of love and the awesome responsibility of the journey ahead. Dan was beautiful, perfect, precious and very loved.  

As babies go, Dan was pretty placid. He slept well, didn’t cry too much and seemed pretty happy. We had no reason to suspect that things weren’t all as they should be.

Dan reached almost all of the major milestones within the right timeframe – except for speaking. I wasn’t too concerned at first, but to be on the safe side, we consulted a speech therapist. After a while we were directed towards an early intervention program in our town, and eventually a paediatrician. That was when we heard the A word for the first time. I thought that Dan just needed more time. 

 Finally, just before Dan’s 3rd birthday, we heard the A word said with definition. And then our world changed forever.

Autism. It’s not a huge word – only six letters – but it means a whole world of difference. Eighteen years ago that word would devastate me. All our hopes and dreams for Dan’s life were shattered and we were filled with despair about the life he would have. On that day I could never have imagined that there would come a time when I would say that there are no regrets, no wishful thinking, no desire for a cure. I would not change Dan for the world. 

Our parenting journey has been different. The road has been long, and sometimes it has been very hard. But it has also been filled with much joy. Despair soon gave way to a fierce and absolute determination to give Dan the best life he could have. It was a steep learning curve. Patience, alternate communication, maintaining routines, sensory issues,  persistence, food intolerances, special education, and advocacy. Every thing we learnt along the way, were the very things we needed to show to the world – patience in the face of ignorance and insensitivity;  persistence to keep on going when things are tough and get even tougher; and advocacy to bring about the changes we wanted to see, the dreams we wanted fulfilled, and for the rights we all take for granted.

Dan is a wonderful human being who graces this world with much love, enthusiasm and enjoyment. He is loving and generous, happy and giving, friendly and helpful. He possesses all the characteristics a mother could ever want for her child. He is a son to be extremely proud of. Even though verbal communication is a struggle for him, Dan demonstrates his love and kindness everyday. I don’t know quite where his journey will lead, but I know it’s going to be awesome.

The journey into autism is tough. It is not for the faint-hearted. But you will learn about true friendship and what really matters in this life. And you will discover depths you never thought you had.

If you have just started on this journey, may you be filled with hope and encouragement.

 If you are someway along this journey, may your well be replenished with the strength to keep on going. 

And if you are not on this journey personally, may you be a source of encouragement, support and understanding for those of us who are.