Monthly Archives: August 2010

swim

I’ve moved my swimming day from Sunday to Saturday. This is the time when my writing consolidates and when I leave the pool I type into my laptop the images that have combined in the water. It’s here that the dusty looseness of my thoughts are dissolved somehow. Like making jelly, the simplicity of swimming freestyle magically produces a substance that will congeal. Tomorrow there will be something tangible, something sweet and slightly more solid than the thoughts of today.

The lady in the next lane had her ipod in a special waterproof jacket taped to her arm. This intrigued me. In my opinion nothing is as magical as the sound of the water, it is not quite like anything else I have ever heard. It’s the perfect accompaniment for my thoughts and to listen to my ipod would drown out the voices in my head, overshadowing all the things I am trying to resolve.

My life is extremely noisy and busy. This is the nature of teaching Kindergarten children who have such a zest for discovery that keeping them quiet would not be right. Maybe this is why I embrace the silence of the mornings and my time in the pool. Maybe this is the only time in the week I get to hear what is going on in me. I protect this time with selfish ambition. I do not want to share my lane in the pool nor my spot on the couch with anyone when I am unravelling the wool of tangled thoughts that make up my life.

The water was magnificent as the sun that promises the return of spring reflected through the surface creating an open, dancing net on the bottom of the pool. With every stroke, I swim closer to my freedom. This sickness, this reorientation of my life through cancer, the fear of the future and all the unknowns will not ensnare me though everyday it attempts to suck me into a vortex of despair.

It is remarkable how well we managed beating the illness. How we backed up each day for hospital to receive treatments and tests. I am amazed how that part of the battle was easier than this. No one could have prepared me for the aftermath, when the worst is supposedly over and life is meant to go on.

It does go on in a way but is different to before. There are so many times when I feel invisible and other times when I actually wish I were. I feel like Hush in Possum Magic enjoying the benefits of not being seen but desperately wanting to be normal again. Will life ever return to what it was? I think not, though most days I pretend it already has. I play along with life, acting as though everything is okay. I occupy myself with activity.

I return to university to study, to fill my evenings with more to do. I sit up late into the night reading about children with autism, wanting to gain qualifications to be an advocate for something or someone. I want to be useful again. I could battle anything now I tell myself. It doesn’t matter what or for whom. I just want my life to have purpose, to utilise the skills I have developed while fighting for Sam.

I have become so deep and so thoughtful about things that I just don’t know where I fit anymore. Even in my silence I wonder if people can hear me, if they can see the battle that rages in my heart. I feel alone in my predicament. The echoes of my heart pulse on a different spectrum, though inaudible, I find people who pick up the sound like radio waves, like sonograms, like the whale cry deep below the surface of the water and people come to my aide.

It’s a secret community with its own handshake where nothing even needs to be said. Jennifer Lawler writes, ‘It’s a club and the password requires an appreciation for dark humor, and you have to have been through gut-wrenching grief to get here.’  This is not where I want to be, all I really crave is simplicity and I wish that I’d valued it before when things were not so complicated. I’d do anything to have not endured what I have endured but I am trying to see what God wants me to see and how He wants me to get on with living my life.

His word tells me that “A bruised reed he will not break, and a smoldering wick he will not snuff out. In faithfulness he will bring forth justice; he will not falter or be discouraged till he establishes justice on earth. In his law the islands will put their hope.” (Isaiah 42:3-4) I hang onto this hope too, knowing that I am bruised, that I have just a small flame left but I lean into His faithfulness because it has become the theme of my life and He has never failed me yet.

I take myself along to church because this is the habit I formed in my childhood, and even though I don’t want to go, I know it is going to be the best part of my day. It will be better than the pool, because today I left feeling a little bit more angry than I expected to and a little bit sadder than usual. The writing isn’t what I want it to be and I dare not post it on my blog.

In church my pastor talks only to me, he stands like God himself in front of me and I am rebuked. “Get away with Me and you’ll recover your life. Walk with Me and work with Me – watch how I do it. Learn the unforced rhythms of my grace. I won’t lay anything heavy or ill-fitting on you.” (Matthew 11: 28 – 30) These words are truth to my spirit, I must let go of the things that I carry, I must step into the peace God has.

So today I returned to the pool to mix the lumpy bits that refused to dissolve in yesterdays swim. All the lanes were full, except the fast lane, which already had three other swimmers in it. I tell myself this is the right lane for me and take off with such speed to prove I belong there. After the first 50m I can barely breath, there is pressure on my chest and I hear God remind me to pace myself, to find the rhythm of the stroke, to swim like I normally do, to remember to lift my head.

It’s a beautiful swim on the perfect day and I realize how far I have come. Looking over my shoulder I see the face of Luna Park and I laugh as I am reminded that just a few years ago my greatest challenge was to conquer the fear of the fastest slide in Coney Island. I can see that God has a plan for my life and decide I will go on surrendering everything until I am positioned right where He wants me, that it doesn’t matter what He removes.

Like Annie Dillard writes about writing, ‘you hammer against the walls of your house. You tap the walls lightly everywhere. After many years attention to these things you know what to listen for. Some of the walls are bearing walls; they have to stay, or everything will fall down. Other walls can go with impunity. You can hear the difference. Unfortunately it is often the bearing wall that has to go.’

It is the same with life. The things that I thought were there to stay might need to be removed; He will find a different beam to support the weight of His purpose. It may involve a lot of mess before things are in place but it may just open my eyes to a whole new perspective. I am discovering that maybe it isn’t all bad.

This week one of my children arrived at school and gave me a gift of gerberas and a card from the newsagent that sang when I opened it. “Look, it is you, Ariel!” she told me and I see a Disney version of myself, swimming under the sea in a petite purple bikini top and a jade green tail. “Yes, it’s you at The Great Barrier Reef” the other children chorus and I laugh, as I treasure how they hold onto every single thing I tell them. Maybe they have heard my voice under the sea, my desire to escape all the things I fear, to surface to the land where humans are. As I write today I remember how Flounder sung to me from the kitsch card and I know that God is having a joke with me. “Darling its better down where it’s wetter. Under the sea.” Maybe in this season of solitude He really is opening up ‘a whole new world’ for me. Maybe He is allowing me to discover the pain of what it is to be in this awful club of grief and despair so that sometime in the future I can rescue others who feel so stuck in this place, like I do now.

He reminds me that He is close. He sends me everything and everyone I need. It is not the same as before but I am not lonely. There are those who heard the sonic cry of my heart as if God has sent them to me as part of His divine plan. They emerge from photographs of my past like a Polaroid developing in front of me, in a way I have never noticed before. It isn’t just my daughter and I alone on a journey. Beneath me He has woven a net from the shadows of the water, a reminder of how He connects me and frees me, releasing me to go the distance, however long it takes.

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Balloon

It is in the writing and the reading, the leaning in and the listening, that the mysteries are solved. It is the desire to hear the still small voice that requires the stripping away of everything, the complexities, the distractions, and the things that demand more than you thought you had to give. I find it in the morning and though the weight of my head on the pillow bids me stay, I press through. I lift my head and rise.

Bleary eyed, I swing my feet to the floor, silencing my alarm, out to the lounge room, I switch on the lamp, light the gas heater, turn on the kettle, find a pen as the kettle boils. I pour my tea; I swap last night’s empty glass of red for this morning’s black tea. As I write, it cools and within 20 – 30 minutes I am closer to the unravelling of my destiny.

“He who has ears to hear, let him be listening and let him consider and perceive and comprehend by hearing.” John 11:15

So this is how I find my way, I read and I write. I pray and I listen. In Hebrews 3: 14 – 15 it says  “Today, if you hear his voice, do not harden your hearts.”

Sometimes the voice of God isn’t saying what we want to hear and that is when our heart hardens. We wanted things to be different in so many ways and the voice is confusing at first because it is unexpected. We thought it would be easier than this.

We prayed all the right prayers. You know the ones? They start with “Use me, Lord” and end in “anything, everything, take my all.” Then we sing aloud in corporate assemblies, with our arms lifted and the band playing it feels so righteous, “All I need is you, Lord” and it is… until Monday comes and you realize that He is all you have. Suddenly it’s not as enticing as it was on Sunday with the slaps on the back and the message from the front.

Suddenly it is just you and your grief, shivering in a cold lounge room trying to make sense of your life. The raw reality of sickness and the endless juggle of work, family, and all the little things you need to do and you are baffled as to how you manage your life.

You just take steps. You just keep writing. On Monday the pages are filled with questions. All the things you don’t get but every writer knows that this is just the first draft and its necessary. You are just getting things down, making the pen move, seeking out the story that one day will unfold like a manuscript. No one is going to read these pages, not even you. Its just lines on a page leading you away from where you used to live, from what you used to think was the only way how.

You tug a little at the dead skin of your life. You feel nothing. It isn’t part of you anymore and there is strange comfort in the tearing away. It reminds you of school when you covered your hands in ‘aquadhere,’ just for the sheer pleasure of peeling. When you get a big bit that comes off in one go, it is ultimate success. It is like that now with your life. It’s a transparent layer that’s hardly discernable to the onlooker but to you it’s a tight pull, shrink-wrapping your soul.

So much is dead, you don’t mind what else God takes. You let Him strip you of the attitudes and the disappointments; you want your life to be fully His.  Then you discover that the piece He is pulling on is joined to a pink fleshy bit that is pumping with life. You feel the sting. That bit hasn’t died. And you cry and you put on a ‘Band-Aid.’ You apply pressure and you remind Him there is still a long way to go.

It is somewhat disappointing how long it takes for Christ’s character to be formed in you. You keep taking your life back to the altar. You think there is nothing left. You ask for direction from Heaven. It comes. It sprinkles down like manna, just enough for that day and with the sustenance it brings, you walk, one step at a time. Day-by-day, step-by-step your confidence grows. Just as the scriptures said it would.

Do not, therefore, fling away your fearless confidence, for it carries a great and glorious compensation of reward.” Hebrews 10:35 (Amplified Bible)

You cannot let go of your confidence in Him. He is really all you have but He is enough. The journey He takes you on is better than you would have imagined. To look back at your old life and desire it is futile now. Birds have devoured the trail of breadcrumbs. There is no path back, he is leading you forward, and if you turn back you know all you will be is a statue of salt. So you don’t look over your shoulder anymore. You don’t crave what you had. You even feel strangely thankful for all that you have been through. It makes no sense but you know that somehow you are better for the journey.

Instead of going back to the crumbs you dropped in the dark forest you see the light in the window of a cottage ahead. You could never have known that this too would be full of challenge, that there is a witch inside, who wants to feed you up and devour you. Yet here you discover that you have become a strategist who knows how to apply wisdom to save yourself. Your life, in this season is all about survival and your dreams seem completely unattainable, visible only in your imagination. You are not even sure if the things you dreamed of all your life are the same things you want anymore.

Maybe the dreams of the past are castles you have built in the air. Like Thoreau wrote ‘your work need not be lost; that is where they should be. Now put foundations under them.’

But maybe the dream has changed, maybe its time to let go. Like a helium balloon that does not have the capacity to carry your weight, you unravel the string from around your arm and watch it float up, up, up, until it is just a tiny dot on the massive expanse of sky. It has gone and in time it will not even be a memory.

Maybe in the letting go of the helium balloon, God has a hot air balloon to replace it. Maybe He prepares something else, something far better. Even though in this moment you feel completely earthbound, going through the motions, the hospital visits, the blood tests, the phoning through for results, the arriving early to work, the taking down of tiny chairs, the cleaning of tables with gumption, the opening of the door with a smile. Maybe nothing seems significant now but God is in the day by day. You put your trust in Him.

You look forward because there is no sense in looking back. Like it says in Isaiah 28:20 “the bed is too short for a man to stretch himself on and the covering too narrow for him to wrap himself in.” The old methods don’t work anymore. The season of sowing has changed you and God has something new. Isaiah 28: 26 says, “For his God instructs him correctly and teaches him.” Somehow it is all going to be okay. You find yourself striving less and just kind of evolving. “The transition is barely discernable from the outside. From the inside it feels like there is just more of God and less of you. Your craving for God increases as you seem to decrease.” (Janet Hagberg)

But maybe like that helium balloon, you too are just a dot floating away. It doesn’t matter anymore. You have learned that there is not much sense in planning too far ahead. God will have His way. You identify with the scripture that says, “Come now, you who say, today or tomorrow we will go into such and such a city and spend a year there and carry on our business and make money. Yet you do not know [the least thing] about what may happen tomorrow. What is the nature of your life? You are [really] but a wisp of vapor (a puff of smoke, a mist) that is visible for a little while and then disappears [into thin air]. You ought instead to say, If the Lord is willing, we shall live and we shall do this or that [thing].” James 4:13-15 (Amplified Bible)

You experience the incredible lightness of being when you discover that your life is in His hands. You let His fire ignite inside you, you lift, you float and His voice brings new perspective. By Friday, you have seen His face on the pages of the mornings. The draft of Monday is forgotten, you have moved on and there is fresh clarity. Fair faced Monday has grown wise, you’ve passed through the woes of Wednesday and now you are Friday’s child, all loving and giving – just like the rhyme. It doesn’t matter what you have to give up if it means you can float with God in the atmosphere of heaven. You drop the weight that so easily entangles you. All you are left with are the non-negotiables, perhaps in another week you will erase those as well but for today it is almost complete. You decide that the view is magnificent from here.

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boat

“When the tides of life turn against you and the current upsets your boat, don’t waste those tears on what might have been, just lie on your back and float.” Unknown

Sometimes we feel so stuck, unable to move. We want to trust that God is still in the drivers seat, leading us forward but at times we are not sure. Things are not going as we imagined, our plans have failed and our ability to take risks is frozen. Instead we look for a place to anchor our boat out of the wind, close to the shore, to feel the sun upon our face and enjoy the picnic lunch we have packed.

We are tired of rowing against the current of life that pulls us in directions that are not predictable. We’ve been caught up in the whirlpool that sucks us in to its core, threatening to drag us under and leaving us gasping for breath.

We row to a place where it is safe. We drop anchor and decide to stay out of harms way for a while, to lie down and rest in a quiet cove, to sleep to the rhythm of the gentle waves that lap at the hulls of the vessel.  This is the most wonderful place but we can’t rest for long, the tide has gone out and its time to push off before we are wedged on the rocks.

Sometimes we wonder why life turned out the way it did for us. Was it a matter of ‘wrong place, wrong time?’ Even in moments of despair and disbelief, Jesus isn’t worried. He reminds us ‘only believe,’ and responds when we ask Him to ‘help our unbelief.’  (Mark 9:24)

Sometimes I feel like Thomas who wasn’t there when Jesus turned up unexpectedly. Was it really His fault that He didn’t believe what the disciples said? How many people return from the dead to show you the holes in your hands and feet? It wasn’t the most believable of stories. I work with boys and they can be cruel. They were just as likely to say, “Ha ha, tricked you!” if Thomas had believed. Sometimes ‘seeing is believing’ but Jesus can work with that.

He turned up a second time so Thomas could get what he needed for His faith to stick. Maybe there are those who are more blessed because they believe without seeing. But maybe Thomas got a worse rap than he deserved from us Bible theologians and our pious thoughts. For me, I think I’d be just so disappointed that I hadn’t been at the meeting. Maybe I too would be saying “I’ll believe it when I see it.” (John 20)

Mostly I’m like Peter not Thomas. I’m outspoken, enthusiastic, the kid lots of teachers don’t want in their class. Personally I like these kids, we understand each other and we give each other the thumbs up of congratulations when we are pleased with ourselves that we remembered to follow the rules. After the Thomas incident I would have gone off like Peter did, maybe not fishing (I don’t fish) but I would maybe have gone for a walk in the sun, or to buy shoes, or to look for the moon in the ocean. Sometimes when you don’t understand what is going on the best thing to do is to go to the place where God is for you. (John 21)

A. W. Tozer said “Whatever comes into your heart and mind when you think about God is the most important thing about you.”

There are moments, days or seasons in our lives when we hit walls. Maybe through a change of career or sickness, or death, or through a circumstance you simply can’t understand and you feel like you are spinning down, down, down, like Alice. The most important thing at this time is to know who God is to you. This is the thing that will anchor you. He will be the one who stops you drifting too far from shore.  The good thing about an anchor is that it doesn’t hold you completely in one place. You can drift a little. You can still feel the movement of the water; you can still enjoy the sea. Maybe it’s not a complete adventure, maybe it requires great imagination, maybe it makes you feel constrained but you are still at sea, the possibility of a voyage is still imminent.

No matter how you look at it though, a boat is a very small place. You are contained, so you might want to think very carefully about who you take with you in this season. Maybe that isn’t your choice either. Maybe like Peter you have people saying ‘we are coming with you,’ just like the other disciples did. I wonder how he felt about this? I wonder if he preferred to fish alone? I wonder if they fished in silence that night all wondering why there was nothing to catch, whether anything would ever work out any more now that Jesus had gone and died and rose again. He kept talking about leaving them permanently. How do you process that?

Sometimes I have no idea how to process my daughter getting cancer. I wonder about the future, I wonder about today, I wonder about why I thought life was going to work out differently to how it has and my old paradigms fail me. Sometimes even God is a long way off so I took great comfort this week in this story. I am glad things didn’t work out the way Thomas or Peter thought they would. I am in this passage of scripture with them, feeling what they felt. Hearing His voice in the distance and I can’t quite make out what he is saying. It sounds like He wants me to throw out my net again for another catch but this just makes me angry, Does He not know I have fished all night, that I have thrown out my nets, that I have given my all. Yet there He stands preparing the BBQ off in the distance expecting me to provide breakfast. So obediently I gather the team and I throw out the net. The fish swim in to it and the catch is such that we can barely contain it.

His Lordship again is overwhelmingly apparent and like Peter I dress for His presence. He has been there all this time, true to His word, He never leaves me or forsakes me. He doesn’t forsake Sam. He doesn’t forsake you. He works with who you are, faults and all. He has spent so much time with you; He knows how to pull the best from you. He knows your strengths and like a good teacher He is drawing out the things that will position you for your purpose and call.

He asks, “Do you love me?” three times and each time my answer is the same. Like Peter, I am saddened that He should ask me again and again. What is there left for me to give up, what does he require from me to prove that I do? My heart response is a resounding ‘yes,’ but secretly I am wishing I were more like John, the disciple Jesus loved. I’m wondering why I can’t just lean on His chest and do nothing.  Perhaps this is exactly what He does require, that I become like John, to lie back in His arms and trust in His grace to carry me through.  Maybe in yielding completely I’ll discover a power I do not yet understand.

Maybe if I shut my mouth, and close my eyes and let the current of His love carry me I won’t care so much about all the things that are out of my control. I hear the rebuke when I point to the path of another and ask “Lord, what about this man?” He tells me “What concern is this to you? You follow Me!”

So I decide I will just keep walking, even if that means feeding sheep in some remote place that I never imagined. Maybe one day I will really surrender and say “for me to live is Christ and to die is gain.” (Philippians 1:21) Surely the goal in and through all of life is to sense that ‘All moments are key moments and life itself is grace.” Frederich Buechner

His grace nudges us forward towards simplicity. He does not want us to return to our childish ways but He wants us to come as a child. This is all about trusting, letting go and being carried.

Oliver Wendell Holmes wrote,” I would not give a fig for the simplicity this side of complexity, but I would give my life for the simplicity on the other side of complexity.”

I have a long way to go but I press forward, ready to sail again.

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Miracle

O, do not pray for easy lives. Pray to be stronger men! Do not pray for tasks equal to your powers. Pray for powers equal to your tasks! Then the doing of your work shall be no miracle. But you shall be a miracle. Every day you shall wonder at yourself, at the richness of life, which has come to you by the grace of God. Phillips Brooks

I changed some things this week. Instead of writing in my journal I asked questions, made lists of what I wanted know, and people I wanted to speak to. Within days the answers came. Maybe this is the season of suddenly?

It’s a year this week since Sam left RNSH, a year since the last round of intensive chemotherapy, a year since she became an inpatient at St Vincent’s in Darlinghurst to start conditioning therapy for her Bone Marrow Transplant. If you told me a year ago that the recovery would still be continuing now, I would not have believed you. I would have uttered some faith platitude that it would be different for us. I was still in the season of praying my “God let this pass quickly” prayers.

I am not in a hurry anymore. My dreams have been on hold for so long it is possible that they could slip through my fingers like crystal water and I would let it flow. I can no more grasp hold of my desires than a person can hold water in their hands. Desires don’t come when we hold on. They come when we let go. When life washes over us and the refreshing of it cooling us is more than enough. The miracle is not in making it happen, or fixing things, or who you know, or taking control. The miracle is in being still and knowing that God is God and in His sovereignty, He will have His way.

In my journal the morning of January 28th, 2009, the morning that Sam was to be diagnosed with Leukaemia, before I had any inclining that the news was looming I wrote this:

‘In Him I live and move and have my being.’ (Acts 17:28)

That’s the goal! Get rid of all distractions and frustrations connected to what I do not have. God alone satisfies. I will be kind to myself and things will come my way. Hearing the voice of the Holy Spirit is supreme pleasure. It is better than anything else. It is attainable. All it requires is devotion and focus. Today I’m going back to work, I need to know God’s voice to do my work, to fill out all the paper work, to love the children and have grace for their parents. I can’t do it in my strength but I can do ‘all things through Him who infuses supernatural strength in me.’ (Philippians 4:13)

This year I want to get my priorities in order. To be fit, to pray, to meditate on God’s word filling my thoughts with His words, to be watching my kids be empowered, strengthened and touched by His presence.

Then in conclusion I wrote this scripture:

“He made from one origin (this reminds me of Jack who thinks Single Origin coffee is the best- Random thought!), all nations of men to settle on the face of the earth, having definitely determined their allotted periods of time, and fixed boundaries of their habitation. So that they should seek God, in the hope that they might feel after Him and find Him although He is not far from each one of us.” (Acts 17:26 – 27)

All that was written at 6:15am (I always record the time in my journal, weird I know!) and 12 hours later I sat with my daughter and my husband in Level 12D, Room 17, RNSH – Haemotology, being told Samantha had Leukaemia. Needless to say, I didn’t need God’s strength for teaching – God had me on a course I could never have predicted and in spite of me, I was prepared for He was close.

Each one of us has a personal calling. I became aware of mine at the age of 12 in Scot’s Anglican Church in The Rocks, in Sydney. I always thought that when you heard the call, the doors opened for you easily but this is not true. There are obstacles in our path and it may take years to remove them. Many give up when it becomes too difficult, or they compromise or settle for something less because fighting for your dream takes everything you have. Sometimes you have enthusiasm but no experience and you fail time and again. Sometimes the scars are surrounded in tissue damage that leaves you numb. Sometimes you think it would just be easier to lie down and pass the baton to someone else. You tell yourself this is admirable, that it is time to assist the next generation and let go.

You train your daughters and your son, you tell them every single thing you know about God’s presence and hearing His voice. As you speak the waves of enthusiasm well inside you, it’s a tidal wave and a hook is plunged into the depth of your spirit catching hold of your heart. You feel the tug of the voice that called you 32 years ago, it will not be silent, it will not let go of its grip, it will not release you though you wish that it would, you have suffered enough. Instead of answers you have questions and if they are answered you think maybe you can get up like the righteous man that fell 7 times, you too will rise again.

Everywhere you go there is a little piece of the puzzle placed in front of you. Someone says read that book, make that connection, do this, don’t do that. You see ‘that the Universe is conspiring in your favour, even though you don’t understand how…  and that intense, unexpected suffering passes more quickly than suffering that is apparently bearable; the latter goes on for years and years and without noticing, eats away at your soul, until, one day you are no longer able to free yourselves from the bitterness and it stays with you for the rest of your lives.” (Paulo Coelho)

Suddenly you are thanking God for the intense suffering, how it has formed you, the people who have crossed your path, the ones who became new friends, the things you have discovered about yourself, the world and your capacity to enlarge. You feel like you have survived some kind of spiritual boot camp and now you are fitter, lighter and stronger but not in a way you could have imagined before.

For Sam’s 21st Birthday her friend Amy organized everyone she knew to put in cash to buy Sam a laptop. It arrived all silver and new like a gift from The Magi, six weeks after the announcement of Leukaemia. Sam set to work to create her screensaver and proudly showed me when she was done. It was this:

Sam thought it was great. I swallowed a lump in my throat. What she saw as a positive affirmation created fear in me. Fear that no one would come, that her condition would worsen, that this was not the right time and I never wanted her life to be over. ‘It’s great,’ I lied.

As I reflect on this now I know she was right.

The right people came.

Things went wrong but we overcame our defeats every time.

We discovered the wonder in waiting, of being still, of knowing God.

It’s not over yet, but I sense we are nearly there.

I do find myself in awe of life and the things that are emerging out of pockets of grief, like finding money in last’s years coat. All the unexpected surprises and the mystery of God’s grace, the sense of illumination that we are indeed part of a miracle.

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Pray

“No one can lose sight of what he desires. Even if there are moments when he believes the world and others are stronger. The secret is this: do not surrender.” Paulo Coelho – The Fifth Mountain

It takes tremendous discipline to survive. Even when it looks to everyone else that it is over (and its far from over), its the flash backs from all the trauma that cause the greatest insanity. These are the memories that haunt me in the night, the ones I try to make sense of so I can return to life.

It’s not just the months of chemotherapy, or dealing with the results from the daily blood tests. It’s not just the monthly lumbar punctures leading to holes in the spine that hospitalise her for days on end, sipping macchiato coffees to ease the pain in her head. It’s not just plucking up the courage to look at the screen where the scan of your daughter’s sagging brain is lit up to reveal how it rests on her spinal cord or processing what this leak in cerebral fluid will mean for her long term.

It’s not just the bone marrow biopsies that are performed every six weeks; or the vision of that corkscrew being forced into your daughter’s back and the grinding sound it makes, as the doctor drills his way deep in through the bone of her back to get a sample of fluid from her marrow to see if the treatment is working at all. It’s not just the memory that haunts you, though you didn’t mean to look, you had to steady her, to calm her, to remind her to take small breaths. ’Good girl, take a deep breath in, you can do this and blow out… its nearly over.’ You lie. And your voice is calm but inside you there is a vice clamping your heart reminding you that you planned to help her breathe one day when she was in labour with your grandchild and now even this is something that you wonder will ever happen.

It’s not just the endless waiting for extra tests you didn’t expect… the MRIs, the gated heart pool scans, the nights in X-ray, the ECGs. It’s not just the Total Body Irradiation that killed off every cell to prepare her to take on the cells of the kind man that donated his bone marrow to give your daughter a chance at life. It’s not just the anaphylactic reactions to the chemotherapy, the tachycardia that came without warning, or the loss of her voice for 3 whole months from another chemotherapy drug. It’s not just the gruff voice of the haematologist who had no people skills and nicknamed your daughter the ‘side-effects girl’ as if it were funny.

It’s not even the days you spend walking through the corridors because you manage to convince them that you know where the file is, that they say can only be delivered by the orderly. You know that if they send you home she will not get the blood transfusion that you she needs today. You learn that you are the world’s best negotiator when it comes to your daughter’s life but you also learn the balance of keeping the staff onside or they will punish you by making you wait longer. So you play the game and learn what sort of coffee they drink so that you can arrive with a type of bribe that just looks like a warm gesture and will not be misconstrued. You learn to be patient, sweet and kind and use all the things you were taught many years ago, back in year 9 debating to convince yourself and others that you have the strongest argument and that you are going to win.

Hold on to your dream
Never surrender,
Learn the lessons.
Speak up for yourself
Or go off the radar
If it makes more sense
Learn the rules
The map of the hospital
The names of every nurse
Ask them to teach you
To do the dressings
To give you access
To the storage room
Get skilled
Write
Fill journals
Don’t complain
Thank everyone who is kind
Make friends with the people
Who serve coffee in the cafeteria
Ask them about their families
Walk in the sunshine
Rub in hand cream
Focus
Believe
Pray
Do time
Never give up
Never loss sight of the goal

The screams came unexpectedly from her room. Everything seemed okay, just a moment ago when I said that I was going to step in the shower cause at the end of the day of work I had gone to the gym. Admittedly it was late, I hadn’t sat with her, we hadn’t talked about the day but she seemed fine and I had programming to do for school and I needed a shower to wake me up. The hot water was reviving me when Jack alerted me.

“Mum, quick, it’s Sam.”

I dressed as quickly as I could, I ran to her room and there they were. My youngest child, tall and strong holding his older sister who is tiny and frail in his arms while she screams, snot pouring down her face, her body convulsing back and forth and she’s saying she can’t take it anymore and life has gone on for everyone else but not her. I think to myself that it sounds as though she has just witnessed a murder; the screaming is so loud, so out of character she is always so calm and in control. Then I think maybe it is a murder that she has witnessed, the destruction of her youth. I tell Jack, its okay, you can go do your homework and I take her instead and we lie on her bed and I let her cry until there are no tears left. Just like I did during bone marrow biopsies I tell her that it is going to be okay. This is what I desire and I refuse to surrender even though everything else seems stronger. We focus on what we really want, which is for her to recover – spirit, soul and body.

The worst thing about sickness is how it contains you. You remember when life was free and you could choose what you did and you could express yourself the way you wanted to and expect things would unfold for you in a normal sort of way. You thought that your kids would be healthy, graduate from high school, start university, get a part time job, meet a boy, get engaged, get married, have babies and that these things are normal and fair to wish for. You never knew exactly what courses they might take, or who they would meet, or what the future looked like but you celebrated the blank page predicting that they would colour it with beautiful pictures so that one day you would step back and marvel at how good life is.

Instead life gives you lined pages and definite instructions and you have no choice but to conform. You don’t like this new regime anymore than the Kindergarten children like the change from A3 scrapbooks to A5 exercise books. You don’t like the diagnosis, or the treatment or the endless months that roll on into years and you wonder how you manage to not get angry with God for stealing all your dreams? Then even as you think about being angry, you hear the voice of your dad, who taught you that suffering was part of the journey, to understand the struggle, to use it wisely, to just be brave. You are reminded of Jacob and you know that your life is marked because even though you tried in the past, you could not let go of God or his call and deep in your spirit you encourage yourself that He will even use this. One day, when it’s over, one day it will all make sense.

When people ask about how we first came to know that Sam had leukaemia they all want to know, ‘what were the signs?’ There were no signs. She was the fittest, sassiest, most capable girl I ever met (apart from my daughter Emma, who is equally magnificent). She was a girl on a mission, who served in church, who mentored the younger girls, who studied hard at uni, who made her parents proud. Sickness did not drag its way into our world; it came suddenly, without warning. Just like people tell you, ‘we are all only a phone call away from bad news.’ I pray your phone call never comes. If it comes, like mine did, I pray you will have strength for the journey and to learn all the lessons it presents and to have courage to just keep walking when you think you would rather die.

When it looks like its over to everyone else because they don’t hear the anguish in her tears, don’t get bitter or complacent or give up. Remember that God didn’t call you beyond what you were capable of, even when you think His estimation of you is so much higher than your estimation of you. Find people to affirm you and to remind you that you will make it and get on with trying to encourage someone else who may need your story of how you survived.

Coelho writes “Cowards never allow their hearts to blaze with fire; all they desire is for the changed situation to quickly return to what it was before, so they can go on living their lives and thinking in the customary way. The brave however, set afire that which was old and even at great cost of great internal suffering, abandon everything… and continue onward… they alone knew the path back to His love, for they understood that tragedy was not punishment but challenge.”

In all that you have been through you pray that somehow he might use all this grief to make an impact on people for eternity but right now its just you and your daughter in the lamplight floating on an ocean of tears. After hours of talking you decide that the only thing to do is to pray. You decide this together. Leading each other because you know that when it was at its worst, the only thing that brought peace was when you surrendered everything, not to the sickness that seemed stronger, but to God who really is. You dream about a day when your story might be told or when you can gather the stories of others who have made it. You know that in the tragedy you have found a sort of beauty, that ‘sadness does not last forever, when we walk in the direction of that which we always desired.’ (Coelho)

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