Monthly Archives: May 2010

The Weather

Come up from the fields, father, here’s a letter from our Pete;

And come to the front door, mother-here’s a letter from thy dear son.

Lo, ‘tis autumn;
Lo, where the trees, deeper green, yellower and redder,
Cool and sweeten Ohio’s villages, with leaves fluttering in the moderate wind;
Where apples ripe n the orchards hang, and grapes on the trellis’d vines;
(Smell you the smell of the grapes on the vines?
Smell you the buckwheat, where the bees were lately buzzing?)
Above all, lo, the sky, so calm, so transparent after the rain, and with wondrous clouds;
Below, too, all calm, all vital and beautiful – and the farm prospers well.
Walt Whitman (1819-1892) Leaves of Grass. 1900

This term in Kindergarten we’ve been learning about The Weather. We’ve walked through the school ovals, watched the leaves change colour, we’ve stamped on them as they fell to the ground enjoying the crispness of their texture under our feet. We’ve done experiments with rocks that are white and black, positioning them in the Autumn sun, we’ve predicted which would hold the heat and then we’ve had long discussions about what clothes we should wear considering the discoveries we’ve made.

We’ve collected rain in an old coke bottle that we transformed into a weather catcher, we’ve learned “Happiness” by A.A. Milne as we’ve coloured cut out dolls in crayons and dressed them in a yellow mackintosh and great big waterproof boots. Our classroom is alive with laughter and primary colours while the rain comes down from black clouds outside where all looks bleak.

We’ve studied the clouds and I’ve validated all the suggestions they’ve given me for what they are made of. Some children say they are wool, or fluff, others say rain, still others know that the water rises off the rivers and streams in tiny droplets that you can’t see. They tell me they gather together going up and up until they become the clouds and they are so heavy they just have to rain.

We’ve tried to create word connections to help us remember the names of the clouds. The stratus is kind of straight, the cirrus is high like a circus tent, the nimbus sounds like a bus, so it could be full (of rain) but we fail to come up with an image to lock the names of the other clouds into our memory. Instead we move on and they want to tell me about the rainbow.

Great joy is encountered when working with children. It’s impossible to be sad for long around their contagious, wide-eyed wonder that convinces me that all is well with the world. The other day we read a book about thunder and lightning and the author wrote that ‘thunder and lightning showed the power of the weather…’ and ‘the power of God’ said a boy on the floor without even raising his hand. ‘It’s true,’ I told him, not reprimanding him for calling out and in that moment I remembered again that nothing is impossible with God.

Sometimes the rain falls so hard against our house we fail to remember the warmth of the sun. Grief chills us, fear rattles us and the despair of unresolved circumstances fill our rooms with darkness. Sometimes the dark cloud just hangs over our house while over the fence we notice sunshine. It was this way for Mr Wintergarten before he met Rose. He lived in a magnificent old house but he was alone. No one had visited him in years. Rumour had it, he was mean, and horrible, and had a dog like a wolf and a saltwater crocodile. So if your ball went over his fence you just had to forget it.

Apart from the weather we’ve been reading Bob Graham this week and if you are not familiar with his writing perhaps now is the time to acquaint yourself. Much truth is discovered in children’s literature and I have found myself in Mr Wintergarten’s house in the cool of the night when my rational thoughts are missing. I have entered the sadness zone, wondering at times where everybody went, what happened to my life and my daughter and our dreams.

Bad things happen to good people but we don’t like to admit that. We want things to go well for us, we want miracles, we want it to be over yet God in His sovereignty allows us to be right were we are. We find ourselves again in the season of changing colours transferring into the dark of yet another winter and we wonder how long?

Sometimes God doesn’t send healing, or strategy, or answers. Sometimes he sends a girl who is brave and doesn’t believe that you should give up on your ball. She leans on the gate that hangs on rusty hinges until it opens, she is determined, she comes knocking at the enormous door and though she nervously twists her fingers in her handkerchief she tells you she’s brought some flowers, and hot fairy cakes. She brings friendship and with it there is new hope.

An illness like cancer has so many complications attached to it and as a mum there are times when you forget how to breathe. Like the Walt Whitman poem at the beginning of this post I often find myself running to the door constantly on edge. The letter (or the phone call) does not always bring good news but as I step outside I find myself looking up.

Like Abraham, I count the stars. I remember the promises. In class I hear faith in the voices of the children, I remember the rainbow and the power of God. I read Bob Graham and I see that I have a Rose and I remember I am not alone. I open the curtains and the sun comes in.

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The Dance

It seemed that all the world were in black and white with accents of red from city signs and the brake lights of cars, when we left St Vincent’s in the pouring rain. Sam had hobbled from the car to the surgery and was worn out by the time we were ready for pharmacy. I left her at the clinic café and took the undercover shortcut from the clinic through the private hospital to the public hospital, past oncology then downstairs to pharmacy.

I’ve taken this route alone so many times, usually with my thoughts racing, my heart pounding yet I find myself feeling grateful for the artwork that hangs on the hospital walls. The corridors of the three medical centres are like a gallery of ever changing art and I swell with joy at the beauty of it all. I tell myself how good it is to be at St Vincent’s where the hallways are carpeted and the rest benches covered in modern upholstery.

I love the oil paintings of the various nuns, doctors and nurses that have served in the hospital over the years, the plaques that commemorate great lives. I love the stained glass window of Jesus that marks the entry to the public side. Somehow I sense God in this place, the tangible power of His breath lifting me as I walk and in the moment He is beneath me bearing me up on eagles wings.

As I pass His portrait set in glass I enter the new display, one of charcoal drawings. Dashing past I admire the spines of books, a pocket watch and a bird’s nest. I don’t stop to take in the details of the images, there is not time but I see them all the same, a tiny taste of what the artist saw as she sat to sketch her still life. Arriving at oncology the old familiar photography art hangs. Images on a backdrop of cloudy blue sky, one of a cow, one of angels’ wings, and a statue I recognise from outside. It is random art, as random as this journey. A cow does not belong in the sky any more than my daughter belongs alone in the café and if I were to do art I may portray something as meaningless yet meaningful.

When I arrived back at the café Sam was talking to an elderly couple that had joined her at the table. They had struck up conversation and Sam was graciously filling them in on her experiences with cancer, a bone marrow transplant and the aftermath of it all. They in turn were sharing their story and somehow the tenderness of it all made my eyes glaze over with tears. I helped Sam up and asked her if she was okay. She hates telling her story but somehow it had been okay, somehow there exists a common bond with hospital folk no matter their age.

It was almost dark as we stepped outside into the rain, I was melancholy until Sam expressed “Oh, I love the city when it rains,” in unexpected delight and I laughed out loud wanting to hug her for being so brave. The rain drizzled on the windscreen all the way home and the wipers began to sing mockingly at me to the rhythm of their intermittent dance. “Two steps forward, one step back, two steps forward one step back,” they sang and I thought about the prednisone that we need to double again, of her flared up liver, of her infected ears, of her bruised knees and sore toe.

I fell asleep early that night only to wake again at 2am. I sensed God calling me to rise with Him, to waltz with Him, to converse with Him and I allowed Him to sweep me up in His arms. I placed my head on His shoulder, I cried and then laughed, throwing back my head, reminding Him that I do not know how to dance. “But I do,” he told me, “and the man is supposed to lead.” As we waltzed together He talked with me and we reflected together on the joy of Sam and Emma’s childhood.

We talked of their love for ballet and laughed at poor Jack who got dragged along for drop offs and pickups, all the hours he spent jumping puddles in the car park waiting for dance classes to end.

Remember the ‘unseen enchaînement’s?’ He asked me. Yes, I remembered those open ballet classes that my daughters dreaded as much as they begged to attend. The instructions for steps were given in French; combinations of movements not seen before and when mastered a beautiful fluid sequence formed a lyrical dance. These classes completely intimidated them and they would find a place at the back behind a better dancer, out of view of the teacher who may explode if they got the steps wrong. Yet they loved the challenge it offered them to expand their repertoire of dance.

The word ‘enchain’ also means to bind with chains, to hold fast or captivate. On most days this is how the road to recovery feels. We are captured and chained yet we hold fast to God’s promises. He holds us in His arms. He leads us in the dance. These are steps we’ve never seen before, spoken in a language we do not understand but He is faithful as we focus on Him.

“Call to Me and I will answer you and show you great and mighty things, fenced in and hidden, which you do not know.” ( Jeremiah 33:3) It is God that gives me the discernment to ask for swabs to be taken from her ears, to insist that the secretary puts my call through to the specialist, that drags Sam into hospital insisting on more tests, more information, more attention to detail. I lie in my bed awake seeking God for answers, calling His name and asking to be shown the things that I could never understand.

When He comes He reminds me that He is listening, is always watching, bringing to my remembrance things He could only know. It’s a beautiful evening for dancing and when we are done He leads me back down the hallways for a closer look at the black and white charcoal sketches. He reminds me the answers are in His book, in His time and He brings new life. He shows me that we are working together just like in art and I am discovering that ‘art is collaboration between God and the artist, and the less the artist does the better.’ Andre Gide

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Window

Rapunzel was the most beautiful child under the sun. When she was twelve years old the Witch shut her up in a tower, in the middle of a great wood and the tower had neither stairs nor doors, only high at the very top a small window.

We’ve all felt trapped haven’t we? Contained by our circumstances, captured by the enemy, locked up in a high tower on the outskirts of town. We play by the rules. We smile, we say we are fine but inside there is frustration and fear. We were beautiful once before life unwittingly captured us.

For us it was cancer that sent us away. It locked us up. It chained Sam to imeds and the slavery, which is chemotherapy. It insisted on a multitude of drugs she did not want to take and I did not want to dispense. As Rapunzel’s hair grew in her isolation so Sam’s fell out and with it fell her sense of self, her confidence and her ability to laugh. Where her eyes used to sparkle in cheeky rebellion now they look back at me begging for hugs.

Sometimes all we can do is look out the window from her bed and take delight in the morning. The sun is shining, the butterflies hover over the hedge and the Adirondack chair looks a cozy place to sit. Yet the tears fall from her eyes that are tired of being tired and the salty liquid leaves a trail down her overly sensitive skin.

My heart is heavy within me. I pray for a way out, for this to be over, for life and vitality to come back to my daughter’s face. I long to hear her laughter, the jingling of her keys, the tread of high heels on the floorboards but there is only sadness as she leaves the house holding her plastic disability parking pouch to suction to her window and her feet scuffle along the floor in ‘comfy’ shoes.

She is brave but intimidated all at once and it seems that as her body recovers her mind battles doubt like never before. Everything requires effort and determination but she takes the time. She washes and styles her short hair, she puts on make up, she chooses her clothes. “I don’t know who I am anymore.” She says as she shrugs lifting the strap of her handbag over her shoulder and heading out the door. The whole house shakes as it bangs behind her and I am shaken too. The echoes reverberate through my body and for once in my life I have no more words.

Moments later the door flies open as Emma returns from a sleepover and the sing song sound in her voice is like new life. I am reminded of a quote by Anais Nin.
“Joy appears now in the little things. The big themes remain tragic but a leaf fluttered in through the window this morning, as if supported by the rays of the sun, a bird settled on the fire escape, joy in the taste of coffee–Joy accompanied me as I walked… The secret of joy is the mastery of pain.” My joy over Emma’s returning is equal to the pain of Sam’s departing and I am undone, sitting stunned on the couch trying to make sense of my captivity.

My evening devotions take me to the story of Rahab who much like the fictional Rapunzel lived in the outskirts of town in a wall with a window. She lived alone in a wall, vulnerable to the attack of the enemy but from her vantage point she could see what no one else saw. Sometimes God takes us to places of complete isolation. We love our family with our whole life but sometimes we must draw aside to get the answers from Him. Like Rahab I am learning to hide God’s word in my heart for the deliverance of my family in the same way as Rahab hide the men of God in her roof.

We can feel alone, disregarded, judged and without mercy but God always brings a strategy if our hearts are fully His. He ignores the mistakes of our past, he doesn’t hold us to ransom, he never treats us like outcasts. He knows our grief, he knows we feel unnoticed but His eyes are on us as our eyes are on Him. Terror may fall upon your community but God can deliver your family, you just have to know what He knows, you just need to seek favour with Him.

The statistics told us we would not make it, the gloom and despair of hospital continually confronts us with what can go wrong. We are not living the life we imagined but God is taking us through. He devised a plan for our deliverance and I bind that scarlet cord to my window and I gather my family. I hold onto the power of Jesus blood to protect and to heal and restore all that has been stolen from us. I do it time and again.

And I am convinced and sure of this very thing, that He Who began a good work in you will continue until the day of Jesus Christ [right up to the time of His return], developing [that good work] and perfecting and bringing it to full completion in you. Philippians 1:6

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Walls

It seems like everything is broken in our house. The toaster, the oven, the dishwasher, the kettle, so when Sam’s call came, her hysterical, inarticulate call, I thought perhaps she was broken as well. “Mum…” was all I could make sense of between the fast paced agonising cries in her voice, so I said, “hang on I’ll call you back.” I told the children “It will be okay but I need to call Sam back and so you could all just pray while I do.” Their little heads dropped in unison on their folded hands and all at once I heard their “Dear God…” requests for Sam. “Maybe just a little more quietly?” I suggested, “God hears our whisper prayers as well.”

“I’m coming home, Sam.” I said when she answered, “Its all right, I’ll be there soon.” I lined the children up at the door, lead them into the other room and I left making phone calls to get a replacement teacher for my class. God being God, it was easy, everything was seamless allowing me to take Sam through the process of seeing the GP, getting referrals then taking her to X-ray. I was also able to follow up on the results of the ear swab taken a week ago, which by now had cultivated a result, a heavy growth of staphylococcus aureus. This leads to dizziness, headaches and untreated can be fatal in her immune suppressed state. With this information I made phone calls to our ear specialist to get her on a stronger anti-biotic and to our haemotologist to check that the anti-biotic didn’t conflict with any of her other drugs.

Sam had forgotten to take her thyroxcin tablet this morning and came inside to retrieve it from the fridge. On her way back to her room, she decided to dash, feeling cold in the morning air. Before doing so she picked up the dog for a cuddle in her room and that is when her little toe became stuck in the leg of her pyjamas, that is when she tripped and fell, screaming to her knees. Home alone and afraid of breaking bones Sam lay there screaming, “Help me, help me,” until her cries and Rusty’s barks caused the neighbour from across the road to come to her aide. Our neighbour picked her up and carried her safely to her bed and that is when she called me, just after the morning bell that ushers my 5 years old children into my room at school.

Lately I’ve been thinking a lot about broken things, systems that don’t work, organisations that don’t change, big ideas without attention to detail and no follow up. Organisations like our public hospital system where you have to fight for a bed, or to talk to the doctor, or follow up on your own tests because you are just a number not a person and no one really cares.

Sometimes in life we find ourselves in positions we don’t want to be in, we are stuck; we don’t know how to change things either. We see that its broken but we don’t know what to do and we cower inside. Life is intimidating, demanding, pressured and sometimes our hearts grow numb to all the causes we know we should do something about, all the people who need our help, all the funds that seek to raise our awareness. We sit and stare at the television screen and we sigh, overwhelmed by all the tragedy and loss. Then we build a wall. Walls are useful for so many things, they insulate us from pain, they protect us from the enemy, and they shield us from the harsh wind that blows outside. The walls are useful until the frost builds on our windows, the chill permeates through our rooms and the fear of uncertainty hangs in the atmosphere like the scent of rising damp.

When its your people you care like Nehemiah cared about the ‘remnant of Jews who were in great trouble and reproach; the wall of Jerusalem that was broken down and its fortified gates destroyed.’ (Nehemiah 1:3) When it’s your children you hear the news and after sitting down and weeping, you fast and pray for days. You plead your case to God reminding Him of who you are and the covenant you have. You say “O Lord, let Your ear be attentive to Your servant,” You pray for favour with the doctors in the same way Nehemiah prayed for favour with the king. You see all that is in ruins and position yourselves even though the enemy mocks you, even though you’re aware that you are no more than a cupbearer, a simple person with no great skill. Through it all, through the pain, through the suffering and relentless grief you discover that you have what it takes to hear God’s voice to discover a strategy and to re-build.

God is renovating lives
He is positioning people
He sees their value,
He hears their cries.
He isn’t leaving them the way He found them
He’s rebuilding the walls
He’s frustrating the plan of the enemy.

Sam’s bones were not broken but her toe is bruised and there’s soft tissue damage all around her knee. The doctor says she won’t be walking for another week, she’s on crutches and her spirit is wounded as well. Sometimes it feels like the wall that protects our lives is only half built that it may never to be completed but God sets armed men behind the wall in the places that are least protected. They remind us to be brave because they fight alongside us, valiant in prayer, generous in practical help and gracious, encouraging words.

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Liberty

‘You are a tortured soul!’ my girlfriend tells me, throwing her head back in raucous laughter, her long blonde curls extending down her back. She knows I don’t mind the comment, that she has ventured far enough on the journey with me to permit it being said. ‘It’s true,’ I agree and her words stay with me as I grapple with the meaning of life and disease and what comes next.

Frustration and disappointment stick to the walls of my heart in the same way the frothy milk of my morning smoothie clings to the glass. Its still remains after the drink is finished and a quick rinse in the classroom sink does not remove its stain. I open the doors to greet my little companions and quickly become distracted by the busyness of Kindergarten. At the end of the week I notice the glass, upturned and growing mouldy. ‘New life,’ I guess but not the one I’d planned. I hide it in the cupboard with all my paints and make a mental note to take it home for a proper scrub with detergent and a brush at the end of the day.

If only it were that easy to remove the stain of regret and the agony that burrows a hole in the depth of our soul. The visions of all we were going to become and the illusions of what we once dreamed life would be hang on little nails like fairy lights, out of reach, as we wait for health to return. ‘It’s not all bad,” I remind myself looking for all that I can be grateful for. I am thankful for what I have discovered about me; the strength I never knew I had, the ability to function on nights with no sleep and my ability to smile while my heart is breaking.

We don’t always get to choose what happens to us or sometimes the choices are narrowed, presented like options but really each option is the same, involving risk and pain. After 7 months of chemotherapy, when a donor match was found we were told that Sam could choose to have a transplant or to keep going with the chemotherapy. Both options presented long term risk. We were told that the transplant could cause death if her body rejected the donor and a list of potential threats to all major organs of her body, perhaps even secondary cancer. We were told that if she continued with chemotherapy the risk of the Leukaemia relapsing would be high and she could die as a result. It didn’t really feel like a choice but we opted for the transplant and we continue to battle the effects of her immune suppressed state.

The thing that people don’t know however is that Sam was in remission when we decided to go ahead with the transplant. Her counts were recovering, her hair growing back and under the microscope it did not look as thought she had leukaemia at all. Twenty years ago they would have sent her home and she would have continued with ‘maintenance’ but the molecular residual disease test (a test they didn’t do years ago) indicated that the cancer could easily return.

Life involves risk for all of us and fear of failure can paralyse us. Instead of taking chances, or making a fool of ourselves, or upsetting the status quo we do nothing at all. We stay in jobs that we don’t enjoy, we conform and we don’t share the deepest convictions of our heart. We just exist. We just try to stay alive. We sit with friends making polite conversation, following all the rules and hiding the things we feel strongly about. We so desperately want to be accepted that we compromise or maybe we recall the last time we spoke our mind and how everything became misconstrued. Sometimes the pain of rejection or the fear of criticism or being misunderstood silences us. We forget that God visited us in our lounge room, that He marked our life, that He anointed us for His divine purpose, instead we accept the opinion of man. We do nothing and the world stays the same.

I recently visited my local vintage store and on the shelf out the back was a beautiful stack of Liberty fabric. I ran my fingers down the folded edges and remembered my Year 11 formal. My memory escorted me to The Fabric Shop in Chatswood were I went with my mum to chose material for my dress. I knew exactly what I wanted, a long dress to the floor, scooped up at intervals with petite bows, exposing a frill underneath. I wanted a tight waist and soft puffed sleeves and Liberty fabric. We thumbed through the pages of Vogue, Butterick and McCall’s until we could find a pattern to adapt to the image in my mind. “Are you sure, Clare?” my mother asked me as I selected a floral bolt covered in red poppies and dainty mauve flowers.

The excitement rose within me as the sales assistant cut the necessary quantity with her heavy silver scissors and then threw the fabric in the air like sail cloth and folded it neatly into the black and white bag with the silhouette of the woman sewing. I was going to be the ‘bell of the ball’ I though to myself, I could see it as if it were already made.

For Caleb and Joshua, ‘The land through which they passed as scouts was an exceedingly good land.’ Though it was full of giants, God was planning to give it to them. Their peers couldn’t see what they saw, instead the Bible tells us ‘they grumbled and deplored their situation.’ (Numbers 14:2). As a result Joshua and Caleb were limited.

My visions of grandeur were limited too when I entered the common room to find girls pouring over Vogue and discussing taffeta, Diana bows, hot pink and cobalt blue. I was silent about my Liberty floral dream. “Mum,” I’ve made a big mistake; I repented over an afternoon cup of Earl Grey tea and without words we returned to The Fabric Shop for taffeta from the remnant table. I’m still a friend of the boy who took me to that formal and we laugh over his tacky blue frilled shirt that he borrowed from his dad. I’m not sure which one of us looked worse but one thing is sure, I fit in.

Why is it so important to fit in? Why do we settle for what everyone else thinks is the right thing? Why do we continually seek advice and the opinion of others when inside our minds we already know what we should do?

Betsy Lerner (author of ‘The Forest for the Trees’) writes ‘Asking for advice about what you should write is a little like asking for help to get dressed. I can tell you what I think looks good, but you have to wear it. And as every fashion victim knows, very few people look good in everything…a writer gravitates towards a certain form or genre because, like a well-made jacket, it suits him.’

I think this statement goes for more than just writing, I think we all have our own style and gift but some of us are too busy waiting for approval, too intimidated by fear to take the risk to go with that gravitational pull that tells us to be as amazing as we can be. It’s so easy to slip into ordinary but I challenge myself not to settle.

Not everyone likes Liberty Fabric but it’s stood the test of time. The new fabric costs as much today as it did 26 years ago and the vintage stock holds its price as well. The fabric intended for that formal dress became many things over the next few years (my mother had spent the entire housekeeping, I think). It became a little smocked dress for Sam; it became a skirt and a top for my first teaching job at PLC in Melbourne. It didn’t go to waste.

I often think about Caleb and Joshua, who spoke what they saw when they returned from the land of the giants. I often feel that pain they must have felt as they ‘rent their clothes.’ (Numbers 14:6) Sometimes the situation in front of us presents real life and death choices as it did with my precious daughter, Sam. At other times the choice is whether or not to follow the dreams that God has placed in our hearts, the things He has gifted us for, the things we have seen before the reality was made manifest and it is then we must decide to take courage for the journey.

Caleb continued to believe for that breakthrough for another 45 years. Joshua 14:7-12 records “Forty years old was I when Moses the servant of the Lord sent me from Kadesh-barnea to scout out the land. And I brought him a report as it was in my heart. But my brethren who went up with me made the hearts of the people melt; yet I wholly followed the Lord my God. And Moses swore on that day, Surely the land on which your feet have walked shall be an inheritance to you and your children always, because you wholly followed the Lord my God. And now behold the Lord has kept me alive, as He said, these forty-five years since the Lord spoke This word to Moses, while the Israelites wandered in the wilderness; and behold, I am this day eighty five years old. Yet I am as strong today as I was the day Moses sent me; as my strength was then, so is my strength now for war and to go out and to come in. So now give me this hill country of which the Lord spoke that day.”

What about you?

“The vision is yet for an appointed time, though it tarry, wait for it, because it will surely come.”

Have you the courage to rise again?

Liberty Shop, Sydney with Sam, aged 2

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The Map

One of happiest memories of my daughters’ childhood is that of reading books in front of the big stone fire in our Melbourne house. More often than not we chose to curl up with one of the books from the “Milly Molly Mandy” series and after first studying the map, then recalling last night’s chapter we would enter the little village where Milly Molly Mandy and Billy Blunt would have another tale to tell.

Everything was always safe in the world of Milly Molly Mandy and we followed her days through the little village, the blackberry patch, the playing fields, and took the short cut behind little girl Jessamine’s big white house and Miss Muggins store to get safely home to the nice white cottage with the thatched roof (where Milly Molly Mandy lived). We never thought too much about what existed beyond ‘The Village’ or thought about the map that wasn’t recorded of the nearby town.

Life with a map is safe. The boundaries are marked in bold lines, we can chose to explore beyond them or we can chose to remain in ignorant bliss, managing our own lives and never taking risks. When there is a map we have direction, all is clear we can find the treasure because it’s marked with an X. Or maybe our map is like ‘Neverland,’ a place where anything is possible and boundaries do not exist. Our map would be limited only by imagination and if we dream it, it is possible.

I’ve lived much of my life through the fanciful world of imagination. I think my children would agree that we’ve delighted in life partly because of my love of books, poetry and make believe. We’ve shared magical adventures together, once creating our very own ‘Enchanted Wood’ just like the one in ‘The Folk from the Faraway Tree.’ We imagined fairies at the bottom of the garden and I sent off Sam, Emma and Jack’s teeth to help those fairies build their houses whenever one was loose and fell out.

I went shopping with Emma recently and we bought the most delightful necklace from Disney Couture that opened to display a map of Pixie Hollow. A childhood of memories seemed to seep out of it when we opened the clasp and we talked for ages about when she had danced as a mermaid in the ballet concert the year they performed Peter Pan.

My mind contains a map of delightful memories, there’s more than just one lane. I have found my imagination to be a most useful tool as we have taken this journey through illness. There is no denying however that the map that I imagined my life to follow does not exist anymore. Where there was once expectation there is simply hope.

What do we do when there is no map and choice seems to be taken away?

Life doesn’t always go the way we planned, does it? Stuff happens, people get sick; business deals don’t go through, someone else gets the job we wanted, or the house doesn’t sell. Life forces us beyond ‘The Village’ and there is no direction, it seems.

Sometimes it feels like we’ve been sidelined, we get angry, we think we’ve had our fair share of setbacks and we look for someone to blame. Unfortunately it’s nobody’s fault, there’s no one to pin it on, it’s not personal, its just life and now it’s up to us to work on our response.

On Friday, I took off my ‘Alice in Wonderland’ costume that I wore to school for the Mad Hatter’s Tea Party with the Kindy children and changed to go to the hospital. We waited for hours to be seen. Waiting is so frustrating. Your heart grows heavy. You watch the sick people come out of the lift all hunched over, with pain in their faces and you listen to them sigh.

They wonder, like you do, whether they should move the car, or ring the children who will now be coming home from school because of waiting so long. They whisper at first, ‘Its been an hour,’ but when the hours roll past they throw their out of date magazine onto the coffee table in angst. It’s not like waiting for the curtain to come up at the theatre or a plane to take you on a holiday. There is no joyous anticipation, just hope and fear curdling in your stomach.

Finally it was our turn and I had so many questions. Some of them I asked the professor twice, and then I recited her responses back to her to check I had understood what was said. It’s the strangest feeling being told that your daughter has such bad osteoporosis that she should be very careful what she does. ‘No high heels, no running, no jumping but walking would be good.’

The damage was to be expected the professor said. ‘After all that prednisone, and chemotherapy and TBI but maybe in 2 or 3 years your bones will be stronger.’ Then she went onto to explain that Vitamin D and Calcium in high doses was good but other treatments that they would give to the elderly would not be worth trialling because in time they too could have adverse effects not desirable in one so young.

We went on to discuss Sam’s thyroid and more fertility tests because the Haemotology doctor hadn’t quite set the right circumstances for the one done previously and we discussed all the options that might be available and some of the complications we may not have considered for the future.

I have a precious friend who had two children affected by cancer. Her son had leukaemia at 4 then further complications at 16, then her daughter had a brain tumour at 16 as well, just after her first son recovered from his second ordeal. ‘You learn to adjust to a new sort of normal,’ she tells me. I know she is right. We adjust, we compensate, we make it work.

We don’t want to just get by though. We don’t want our ordeal to dictate to us. We are not victims we are survivors who we wear the wounds of war. Though our heart grows faint within us, we hearken to the sound of the trumpet calling us to higher ground.

‘Many are the afflictions of the righteous but the Lord delivers them out of them all.’

‘Blessed be the Lord my Rock, who trains our hands for war.’

God is training us for something. I imagine a blank page in front of me, a pen in my hand. I see a new map being drawn, a map that leads the hurting, the wounded and the lonely to safety.  I see a place were dreams come to pass instead of growing musty on the shelf. I hear people’s voices speaking. The ones who thought that time had passed them by. I see the pain being worth it because through it a lesson was learned and the solutions could be passed on to another. I see a tribe of like-minded people gathering, from all backgrounds, ages and social status with the realization that we are all needy and broken and desperate for community.

I see God in all His grace reminding us that He came:

To grant [consolation and joy] to those who mourn in Zion–to give them an ornament (a garland or diadem) of beauty instead of ashes, the oil of joy instead of mourning, the garment [expressive] of praise instead of a heavy, burdened, and failing spirit–that they may be called oaks of righteousness [lofty, strong, and magnificent, distinguished for uprightness, justice, and right standing with God], the planting of the Lord, that He may be glorified. And they shall rebuild the ancient ruins; they shall raise up the former desolations and renew the ruined cities, the devastations of many generations. Aliens shall stand [ready] and feed your flocks, and foreigners shall be your plowmen and your vinedressers.’ Isaiah 61:3-5 (Amplified Bible)

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