A handful make their way into the play house, another group starts building a ‘crazy town’ with the blocks, one girl sits at the table to complete a maths exercise and one group of girls starts walking around the room. In their hands they carry pencil and paper. They begin asking the other girls questions and writing something down. I watch and listen.

“Do you want to be in my club?” I hear them ask each other.

“Yes,” comes the reply.

With that the interviewer races to the list of names that is on the word wall and lying on her tummy, begins to copy the names of the ones who said yes.

Then it continues and eventually the page is full. I watch as she unzips the pocket on her little uniform and stuffs it full with the paperwork.

The girl at the desk, doing maths, looks up at me with a twinkle in her eye. I wink back at her and she laughs.

“What exactly happens in the club?” I ask her.

“That’s exactly the thing,” she states with maturity, “nothing happens at all.”

At the age of five, the little girl at the table has worked out that life is about meaning and purpose. There she sits, contently applying herself to a non-compulsory maths paper while others flutter around her seeking friendship. I want to be the girl doing maths but I see myself on the floor filling out lists. I’m not proud of this fact but I am very aware that my path changed direction when my daughter was diagnosed with cancer. Suddenly I became aware of how many trivial activities used to fill my days.

I made lots of decisions during the year I fought for her life. I discovered that great things could be accomplished through focus, determination and mostly the grace of God. I haven’t wanted to shrink back into my old habits. I’ve wanted to press on, develop my skills, and define my calling. I’ve spent a lot of time thinking, asking questions and rolling things around in my head.

This week I am reading Susan Greenfield’s “i.d. the quest for meaning in the 21^st century.” Greenfield is a neuroscientist and an excellent writer. I’ve always had an interest in brain research – I guess it goes with the territory of early childhood education – but there is so much to learn and so much I still want to know.

I am encouraged to read, “neurons, like people, can only just about survive – and certainly don’t flourish in isolation.” Greenfield goes on to say that “’No man is an island, entire of itself,’ John Donne’s famous mediation on the interconnected nature of the human condition could just as easily apply to neurons: the brain works through its billions of cells ceaselessly networking with each other.”

This relieves me because I am a person who desperately needs other people. Now I feel justified in this. I feel like I am okay. We want to be okay, don’t we? There is nothing like that aha moment when you discover someone feels exactly the way you do.

In my morning reading I’ve been meditating on when Jesus went to the Mount of Olives. Often when Jesus prayed he went alone but this time he took Peter, James and John. Luke 9: 28 – 29, 32 record it like this: “He took Peter, John and James with him and went up onto the mountain to pray. As he was praying the appearance of his face changed and his clothes became as bright as a flash of lightening. Peter and his companions saw His glory.”

I found myself thinking about this for days. I’ve been asking Him why He chose those three men. Mostly I want to know why He chose Peter. I see myself in Peter. He’s always the one with an opinion; he speaks out of turn, he is eager and enthusiastic but not always right. Yet Jesus chose Him and scripture records it. It even records that in this situation he blew it again. “Master, it’s wonderful for us to be here! Let’s make three shelters as memorials – one for you, one for Moses, and one for Elijah.” (Verse 33) It’s the sort of thing that I would say. I would want to make an event, have a party, build a shelter so that Elijah and Moses could stay. But after the cloud passed over them Jesus was there alone.

Jesus didn’t need the things Peter needed, but He did need relationship. I’m not sure why He took Peter to the Mount of Olives. I don’t know if it was because He liked Peter’s company or whether He wanted Peter to learn a lesson. What I do know however is that, “They didn’t tell anyone at the time what they had seen.” (Verse 36)

Maybe, like me, Peter was processing the events that happened around him and for a while that caused him to be silent? Maybe it raised more questions? I have so many questions about so many things and I am glad connection is good for us. I seek out answers from the people who know more. I devour books, I set up coffee dates and I ask. This week, I took a chance and asked a stranger to coffee. The stranger agreed and for an hour one morning before school began, I asked her everything I wanted to know about female education, her research, how she managed to complete her PhD. I came away knowing much more but the stand out thing that she told me was that completing her research involved removing emotion and deciding to remain committed until her goal was reached.

I thought about the 5 year old at the desk doing maths; I watched her play at lunchtime with all the other girls, I thought about the fact that we all need relationships, to build connections, to be needed but maybe some of us need to focus our time and energy a little more on other things. Maybe in taking Peter, Jesus was reminding him that he was worthy of being chosen. Maybe he was trusting Peter with an experience that would stop him from taking the world at face value. Maybe Jesus was giving Peter an opportunity to make sense of his own unique narrative from the context of his life story. God gives us tremendous opportunities to grow, to move away from the trivial.

As I write this I realise that I too have been to the top of the mountain with Jesus. That I have seen the radiance of His Presence on the night my daughter did not die, the night the medical staff thought she would. Maybe as a result of this I am a little more purposeful with the decisions I make and maybe one day I will look back and be thankful for the person the experience helped me become.

‘When we cannot get what we love, we must love what is within our reach.’ French Proverb

I head to the car with my sunflowers. Nothing much changes really. Different school, different children but the lessons are the same. In science we are studying ‘living things.’ I love this unit of work, it’s kind of new to the children but it’s not new to me. I have taught this lesson before a thousand different ways and yet it is me who always discovers way more than the children.

I’m a slow learner but given the opportunity I to get involved – to plant, to touch, to smell, to hold – the concepts sink deep. Or so I think. Until suddenly I realise that the question I’ve been asking is the same one I have already asked. I know the answer. It just isn’t the answer I’m looking for. Sometimes we think it is God who got it wrong so we pitch the question a different way. No wonder He hangs the ‘out for lunch’ sign on His door.

He isn’t in a hurry for this test to be over, to move us to the next stage. He is quite happy that if we don’t get it first, we can sit the test again. It’s like the children with their sight words and readers. They desperately want the next set but sometimes they aren’t quite ready; I have to accept that, maybe, neither am I.

We’ve planted seeds in Kindergarten. Every child was given seeds from the same packet; they planted them into the same soil, they lined up their pots along the same wall and watered them from the same can. Yet as we make our way to our garden we notice that life isn’t fair. Some people have healthy plants and some have only soil. It makes no sense and there are tears. There are always tears in Kindergarten. I take the child who has only soil in her pot by the hand, I lean over and I wipe her eyes. “It will be okay,” I say. “We can plant again.” She nods and sniffs. Everyone sits quietly for the replanting. Their hearts break for their little friend who has no life in her pot. But I know that she is already behind everyone else and that this plant will be smaller when it’s time to take them home.

Sometimes it seems that everyone else is further ahead. That for some reason unknown to us they got the break we were looking for. Sometimes we think our turn has come. We are full of enthusiasm and hope, telling ourselves (and anyone who cares to listen) that we’ve paid the price and we are prepared. But try as we might, we cannot move. It seems we’ve done nothing but spin in circles; we are exactly where we were when we first set out. This journey is taking longer than we ever thought and the lack of progress is frustrating. “It’s a lifecycle,” one child tells me, when we discuss the way the seeds drop to the ground when the sunflower dies. She is excited about this discovery and suddenly I realise that I don’t want to go around this mountain again.

I lie down on the inside. I make a conscious decision to stop spinning and let the impact of the turns I’ve already made pin me to the ground. I feel the weight of this and though I am still, everything spins around me. Every circumstance, every lesson and all the things I have learned. I look up and tell God that this time I will surrender. That whatever He wants, I will do. I am honest with Him. I think He has made the wrong decision on my behalf but I hand over control anyway; I tell Him I won’t move until He does. I become like the Israelites.

When the cloud remained over the tabernacle a long time, the Israelites obeyed the Lord’s order and did not set out. Numbers 9:19

As the world spins past, I ask Him to help me rest in the knowledge that He knows better than me.

As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:9

I slipped on some shoes to go to work earlier this week and I remembered the story about the day I bought them. There is nothing remarkable about these shoes. They are not the type of shoes that high school girls give a rating out of ten from their seats in the auditorium when the cool teacher walks on the stage. Those shoes belong to my new friend. These shoes belong to me.

They are plain, practical and a little bit kindergarten. They have lace at the side and I can recall a small boy who used to huggle close for stories trying to weave his finger through the lace to touch the flesh of my foot. The girls I teach now don’t know they can huddle close for stories. The furniture in my room isn’t right for huggling but if I were to stay it’s the first thing I’d change. Heaven knows my home would be grateful if half the furniture could be returned to my classroom. At the moment however I’m of no fixed address.

So back to the shoes…

It was August last year when I bought them. I know this because I dialogued with a friend about them and dare I admit I still have the conversation saved in my phone. Who does that? Do you delete your messages?

In August 2010 I was in much the same position as I am now. I was trying to make a decision. I wanted to let go of something that it made no logical sense to let go off. I’d been leading this amazing team of women for years, doing life together, gathering people and serving in church. It was all kinds of wonderful but the season ended. I knew it had but I couldn’t explain why it had ended or why I wanted to move on. It just was what it was and I felt such deep sadness. I wasn’t sad to let go. I was just sad that I couldn’t articulate why I knew I should. It is so rare for me to have no words.

So in my sadness I drove to the ocean to look for the moon. It’s what I do. It’s this bizarrely precious moment that I have with God at the sea. When all is dark except His one enormous light in the expanse of the heavens and there I am reminded that He holds it all in His hands. It is there that I can let go.

Of course there was no moon that night. There are nights like that. When even God is silent. He turns His back, or so it seems. You go to knock on His door and it says He is out for lunch. You know He probably isn’t. That behind that door He is still working really but for some reason He is leaving the final decision up to you. The truth is you might fail, but He doesn’t mind if you do. He’s a very good teacher and He knows that sometimes the best thing is for you to get it wrong.

I didn’t know where to go from there. I couldn’t go home to the sound of the television or the conversation in the lounge room so I went to look at shoes. I bought the ones I described earlier. They were nothing special but I named them with the place I wanted them to take me.
Over a year later, slipping on those ordinary shoes I realised that they had taken me right to the place I hoped they would. I had completely forgotten about the night I lost the moon and found shoes instead. Then this week I remembered that a dear friend had sent me an SMS that night. She knew I was agonising over the decision and asked, “Did you find the moon?”

I told her instead that I had bought shoes and named them with the place I wanted to go. Lucky for me, you can’t hear the laughter when someone reads your SMS.

I named those shoes with an impossible destination. There was no way in the world I was ever going to get those shoes to take me to that place. Everything about my life told me to just keep doing what I was doing: to stay safe, to be sensible, to follow that line set before me. The predictable path of what life hands you is so much easier to reconcile.

We like the path we can see. I thought about this last Saturday in the pool with my new friend, the one with the great shoes that high school girls grade. I found her in that place that the ordinary shoes with the impossible name took me as well. We’ve been swimming together and last week we decided to swim in the ocean pool near her house. Before we hopped in she told me there was a line to follow in a certain lane but I didn’t quite catch which one as she waded her way in by foot. I prefer to dive straight in, so I headed for the deep end.

The water was freezing and I gasped. The awkward oversized wetsuit top she had lent me filled with air and I felt suddenly lost and incapable. I couldn’t see my friend amidst all the swimmers in the pool I never go to and I could not find the line or remember where my friend said it would be. I gave myself a stern talking to. I reminded myself that I am a good swimmer, that a little cold water never hurt anyone, to just get on with it and be sensible.

After four or so laps, I decided to traverse to were I could stand and bobbing out of the water was my friend’s head with her baby blue cap and pink goggles. “Oh, where did you go?” she asked. “Swim with me.” As I followed her through the water I noticed the line. It wasn’t what I expected. It was the way the concrete had been laid at the bottom of the sea pool. It was like a seam between two massive expanses hidden beneath the surface of the water.

Only a regular would have known it was there. I was fine from then on and suddenly I found myself thinking about how you respond when you are out of your depth, or when life takes your breath away, or when you can’t find someone to follow. I thought how much easier swimming is in my familiar pool, where I know the hidden markers. Life is much simpler when you do things the way you always have done. I don’t know about you, but for whatever reason I do not want the simple path.

I like what Sir Ken Robinson says in The Element. He talks about the things that limit us. “Many people have not found their Element,” he writes, “because they don’t understand their constant potential for renewal. This limited view of our own capacities can be compounded by our peer groups, by our culture and by our own expectations of ourselves.”

I don’t know what comes next, or where the road will take me, or what decision I’ll make next. I’m trying to hear God’s higher thoughts in all of this, but it feels like He is leaving the decision in my hands once again. Maybe I should go, buy shoes and name them with the destination I want next.

As my car comes to a complete stop, a lone yellow daisy catches the sunlight and my attention in a crevice of rock. There is roadwork on Mona Vale Road, nothing anyone can do but wait. I smile at the flower, reminded of all those moments during the last two and a half years when life felt as though it had come to a complete standstill. I’ve learned to see that roadblocks are not the end. They are a time to be still, to reflect, and to be grateful. I am so grateful in this moment. Life takes the most surprising of turns.

For years you found yourself on the straight path with your goal in sight in the far distance. It may have been a miniscule, blurred dot so far away that the road seemed to narrow into a triangular point but still you could see it was there. The small dot satisfied your imagination, encapsulating everything you dreamed you might be. It was as powerful as the DNA of a cell and though you didn’t know enough about science to completely understand the formula, you had this idea that eventually you would arrive at your goal. Even though your school report cards told your parents that you did not work to your potential, you believed that you had what it took to get there, that maybe the conventions of school routines and conformity wouldn’t be required in the real world.

You didn’t know then that a year of isolation would cover you after the news came at the end of summer 2009. You didn’t know that every moment would be spent in absolute silence, punctuated only with the clashing of metal trolleys, the beeps of imeds and the sad conversations of strangers through thin curtains. In that year you discovered much about focus and attention. You found out that an ordinary girl could stand and reason with the great minds of physicians without feeling like a fool. A dear haemotologist at St Vincent’s taught you this, as he leaned in and listened to your every word. Though his eyes revealed how tired he was, he never complained of being weary. You learned a lot about what matters in life from this intelligent, unpretentious man.

The small dot didn’t move through that whole season. Instead it wobbled on the horizon like it had been caught on a wave. It rocked a little up and down as if it was trying to help you find level ground. You continued to dream about life when this was all over, when your daughter was well, when life moved on. Finally that day appears and life does move on. You get caught up in the excitement of wedding preparations by day but by night you lie awake searching. When you were not looking, it disappeared. The dot was gone. The thing you focused on for your whole life went completely out of view. You don’t know what to make of this and contrary to everything you believed about writing, that day you put down your pen. There was no longer anything to record.

What do you do when the dot disappears?

You go through the motions of life. You do what is in front of you. You operate on autopilot because life must go on. You are so happy to be through the crisis but after living in crisis mode for so long you wonder: what was the point of it all? You stare at the horizon trying to find what you’ve lost. Perhaps your whole life really is just a drop in the ocean? Maybe your dream has submerged.

Then you do something you never do. Since you’ve nothing to write, you decide to scroll through the pages you wrote over the last three months; suddenly you see that it is not just one dot, but a spattering of dots that have been marked across life’s page. You pick up your pen, not to write but rather to join the dots, carefully following the sequence of events. You look; you consider the sketch as all the dots form a picture that you have never seen before. Suddenly you discover that the journey has been more than remarkable and you begin to wonder whether, in the next three months, you might get to colour it in.

FOOTNOTE: In the July school holidays I began an intense search to see how I could become an advocate for Bone Marrow Donation in Australia. My search led me to find the wonderful, Shula Endrey-Walder from Gift of Life, Australia.

Even though my daughter had a stem cell transplant in September 2009, I knew nothing of Shula’s work. We meet one rainy day at Edgecliffe Station to share our dream for spreading awareness for more donors to join the world-wide registry, so that people like my daughter have a chance of life. We became fast friends.

She, and some of my wonderful friends (you know who you are) gave me courage to submit an application to speak at TEDx Macquarie University. Two weeks ago, after presenting a ten minute talk to a panel of judges I discovered I was successful. The event is next Sunday the 16th of October, I hope you can come. If you would like to help me sign up potential bone marrow donors on the day, please let me know.

Here is my application video, thanks to the prowess of Bek Exton who filmed, edited and uploaded me to YouTube.

Through the months that passed, you discovered that you were okay in this new kind of limbo. You grew accustomed to not having solid ground beneath your feet. You had been on the swing before, hanging on to life with the tightest grip. You held on when the summer sun burned you. You held on as you watched every autumn leaf fall. You held on through the bitterness of winter. You held on with such hope through the spring rain. When you thought you had no strength left, somehow you managed to keep going and you imagined what it would be like to go back to the way life was before.

No one told you how hard it would be to go back. You thought nothing could be harder than this. The memory of how good life used to be gave you coloured pictures to look at and they helped you imagine that you would return. There was no colour in the cancer ward – everything was sepia and aged. You were terrified that you would be swallowed up in that place but you didn’t acknowledge this then. Instead you trained your imagination and dreamed impossible dreams.

You dreamt that new life would come and slowly, surely, it did. You returned as best you could to the life that you used to know; but somehow your shape had changed like a piece of weathered timber and you didn’t fit anymore. So now you hang between the land that was once familiar and the land that is yet to come. You’re beginning to wonder if it is almost time to make the pendulum swing so that you can land on the other side. You’ve examined the terrain below from your vantage point and you can’t quite make out the details of the landscape. You hear distant music from the valley below, and from above you hear the rope holder laughing.

“Call to me and I will answer you and tell you great unsearchable things,” He says as you enquire about the music.

Suddenly you are in the valley and He shows you a circle of children playing pass the parcel. When the music stops, the child who holds the parcel peels off a layer of newsprint to discover a gift just for them. The mound of newspaper grows higher in the centre of the circle and the parcel being passed gets smaller and smaller. As you watch you realise that no one misses out. There is a prize for each child.

“Just keep waiting, your turn’s going to come,” whispers the rope holder. Suddenly you are up again, swinging over the gorge and the edge of the new land seems closer than before.

“All things work together for good for those who love me, who’ve I’ve called according to my purpose,” He says.

“I think I’m almost ready to let go of this rope,” you respond and you feel the momentum of the rope as it begins to swing. Something good is about to happen. A dream is about to materialise.

…And as I prepare to post this blog entry, Sam enters wearing this:

Found at: tumblr_la6xp6GVo31qdge7lo1_500_large

“Stand at the crossroads and look;
ask for the ancient paths,
ask where the good way is, and walk in it,
and you will find rest for your souls.” Jeremiah 6:16

I woke up heavy. Like a layer of fat had floated to the surface, clogging my heart. Sometimes you can’t see the way through or the point of it all. My dreams are stirred with thoughts of my friends and the battles we face and my inability to do anything. I hear His whisper before the alarm. I tell Him it’s cold, it’s dark and I want to stay in bed. So He hovers. He waits. He knows my anxious thoughts.

Below the surface is an ocean of calm.

“Come,” He says, “let’s sit for a while.”

How can I resist His voice?

So I throw back the covers and my husband stirs. “Where are you going?” he asks.

“Time to pray,” I say, dragging my body from the bed.

I stare into the dark pot that is my life. It is fragrant still but it is chilled.

“I’m not sure if I can get the warmth back,” I tell Him. “So many sad and difficult stories, will it never end?”

He listens. He is not in a hurry.

I fold my arms. I am not ready for His words. At the moment, none of them make sense.

I’ve been foraging for answers, digging deep in His word, trying to grapple with the concept of preparation. There is something, someone once said, I know not who but it goes like this: “God never wastes a prepared life.” I don’t want to be prepared, or set apart. I no longer want to run with the message or bring hope, or inspire anyone. I just want to be left alone.

“Oh, I see,” He says before I utter a word. He smiles at me like I am a petulant child. Perhaps I am.

“It’s true,” I tell him. “Look at it, it’s revolting in there.”

“Like in the cistern where they threw Jeremiah!” He comments, knowing I’ve been reading the stories of the men who got an audience with their king.

“It’s not fair! Why does the battle always need to be so big?” I honestly don’t get it.

He laughs at me, this time. And I smile and then I frown. I picture Jeremiah. He is doomed. Sinking deep into the mud because he warned the people to leave the city. “It doesn’t pay to help others,” I say. “It just gets you into trouble.”

“Many are the afflictions of the righteous but I will deliver them out of them all.” Psalm 34:9

I know this. I know He is faithful. He is my deliverer. He sends in help every time. It only takes one person “to stand at the junction of two departments, or fill in the gap between departments. Ronald Burt of the University of Chicago has a concept he calls structural holes. In any society there are clumps of people doing certain tasks. But between those clumps there are holes, places in between where there are no people and there is no structure.” (Brooks, p 157, 2011). This book I am reading, The Social Animal, fascinates me.

Sometimes we find ourselves stuck in the holes between two places. I feel like I live my life there these days. I am trying to find my use between existing structures, to find my voice when the door feels closed in my face. I discuss this with Sam’s oncologist.

“There is so much need and no knowledge,” I tell him and he agrees. “It only takes one person, someone like you, to be at the forefront of making things happen. Herein lies the frustration of the rest of your life but you can change things. I can help you with the research,” he says. Turning on his desk chair to face the enormous screen of his Mac, he types something into his wireless keyboard and then tilts his screen to my view. “This is where I would begin.” I copy down the site address. He wishes me all the best and decides to not charge me for today’s appointment.

“He’s so nice,” Sam says as we make our way to the lift for the next specialist.

When you chose to stand in the gap, people always come alongside you. Though your heart is heavy and burdened, though you’d prefer to walk away, though the residue of cold lard has risen to the surface, you know if you remove the excess and keep going, you will find a way through.

Ezekiel 22:30 says it like this: “I looked for a man among them who would build up the wall and stand before me in the gap on behalf of the land so I would not have to destroy it, but I found none.” God is in the business of rebuilding walls. He shows His servants how. He connects you, He equips you, He releases you. Sometimes it requires that you say nothing until you fully examine the situation. Nehemiah travelled by night to inspect the walls and gates of Jerusalem that had been broken down, destroyed by fire and found places where there was not even room to get through. People mocked him, he was ridiculed but he knew the gracious hand of his God.

In every season God is faithful. When the time is right, He positions us. On that day, we need to be ready, just as Daniel was when he was called to translate the writing on the wall. I ponder this thought. Am I ready? Do I know what to say?

I feel the warmth of His company; my cold, hard heart begins to melt. He’s taking off the lid, He’s reaching for the large, flat spoon and He scoops the residue off the surface.

“It’s okay,” He tells me. “You are ready, you’ll be fine.” Then he passes me the spoon.

“Taste and see that the Lord is good, blessed is he who takes refuge in Him.” Psalm 34:8

He has gone and it’s time for my shower.

On Wednesday the 8th of June 2011, I connected with Sasha for the first time since 2009. We made a few attempts at connecting before this. Little things – ‘likes’ on Facebook, a couple of messages, nothing more – but that thin thread that wove us together in the corridors, first at RNS and then at St Vincent’s, was always visible in my mind. Not a day passed that I didn’t think of her, that I didn’t wonder if more could have been done.

We met for the first time in March 2009, in the waiting room, amidst the old people in slippers and dressing gowns taking up all the chairs. I saw Sasha and Michael talking to each other as they walked down the corridor. This stunning girl with olive skin, enormous eyes and long, auburn hair and this pale thin man, agile with his drip pole, waltzing towards us. They laughed as they approached and her teeth shone as she threw back her head. I liked this girl from the outset. I wanted to talk to them, excited for company, but I was apprehensive and protective of Sam. That day was the first time Sam and I saw any people, apart from the nursing staff, who were younger than me. We had been in and out of hospital everyday for two months.

We didn’t go out of our way to make friends with the other patients, mostly because they were old and frail and had nothing in common with Sam, just Leukaemia. We had no desire to compare notes or diagnoses or treatments with other patients. Sam never wanted to acknowledge Leukaemia. We didn’t talk about her condition, or the doctor’s words, or the overwhelming amount of literature they gave us. “You read the stuff,” she said, “and just tell me what I need to know.” I read everything I could get my hands on: every A4 sheet, and every booklet from the Cancer Council, every leaflet in the drug packets that listed possible side effects. I kept them all together with the print outs of her daily blood results and the Centrelink forms until the folder bulged. I even bought sleeves and dividers to try to bring order and control to a life that was falling to pieces.

It was Michael who initiated our first conversation, as we sat in the purple tub chairs under the 1980s style mural painted on the waiting room wall. “So,” he started, “what kind of cancer?” He was so loud and confident that it felt like an invasion of privacy at first. Then I realised that Michael had cancer too. His head was completely bald, his flesh pale, his drip stand loaded with imeds and his loose track pants hanging from his hips.

Sam responded in a quiet, friendly voice that she had ALL Leukaemia.

“Oh, ALL,” he said. “It’s a bugger. Did you get any Centrelink yet?”

I felt uncomfortable but Sam seemed to be enjoying the company of young people and had started to ask Sasha questions. They sat with us, told us their names and Sam and Michael began to exchange stories: how they had been diagnosed, where they lived, their dreams for the future. I watched and listened. These were the first people we had spoken to who faced a similar ordeal. Michael had Acute Myeloid Leukaemia, and he was diagnosed on his 29th birthday. Sasha was 23 and they had just got engaged. Michael had a different protocol to Sam but the same doctor, and he entertained us with impersonations of our haemotologist’s gruff voice and sadistic nature.

We laughed so hard. It was surprising and delightful to see Sam engaged in conversation and smiling. Her whole face lit up. It was the first time I realised how lonely we had become. It’s funny how people turn up in your life just at the right time. It was the right time for us to meet Sasha and Michael and to begin the parallel journey down the path of beating Leukaemia.

The journey continued until August when Sam was transferred to St Vincent’s. Michael was still waiting for his donor to be found. He wasn’t offered much hope because his mum was Lebanese and his father Australian. People of ethnic minority are disproportionately represented on the Australian Bone Marrow Donor Registry. In spite of the lack of hope, Michael was the most positive person I have ever come across. I don’t think he ever stopped believing he’d find a way through; but he lost his battle on October 17, a month after Sam was discharged from hospital. Her transplant had been a success.

With gratitude there is also great grief. I’ve never gotten over the fact that Michael didn’t make it. I’ve never come to terms with the fact that with more donors, more lives could be saved. I’ve never understood why there is so little publicity, so few donor drives and a lack of education surrounding bone marrow transplants. I’ve wanted to tell Michael’s story in the hope that people of ethnic minority would donate stem cells; but to do this I needed to talk to Sasha.

So we talked. We spent two days together huddled in a café filling each other in on all the missing pieces of our parallel lives. We cried, we hugged, we sighed. We agreed that Michael’s story needed to be told. My next plan was to get my facts relating to stem cell donation correct. In the process I’ve made some great discoveries, but also hit many walls. There is a lack of funding, a lack of awareness, a lack of donors, a lack of campaigns and a lack of people prepared to do anything about it. Or so it feels.

Sometimes you just haven’t knocked on the right door yet. So you push through and without warning, the familiar thin thread appeared amongst the bracken and the undergrowth. You would have missed it entirely if you weren’t looking down at your feet. Feeling forlorn and frustrated, seeing no way through, you’d begun to kick at the stones and let the damp soil muddy your toes.

You knew the forest was dark, the foliage dense; but you hadn’t expected the resistance to come from those you were trying to support. You didn’t anticipate the transparent canvas would block your path, prevent you from entering. You didn’t expect the shield that it became; and so when the thread appeared on your path, you did nothing at first.

You desired to hold its coarse grain between your fingers, to follow it, to find where it led; but you’d learned by now that there is some wisdom in being cautious. That very thread may tighten the spring in the canvas, propelling you back down the path from where you came.

So you consider the thread and you imagine the possibilities if this one thread could be worked loose. Perhaps there is still a way through. Perhaps the weaver erred. Perhaps the weft didn’t quite make the loop over the warp at the end of one of the rows. Maybe if you handle this correctly you’ll pry open a small hole, just enough for your finger to poke through.

Image Found here

“Jesus loved Martha and her sister and Lazarus. Yet when he heard that Lazarus was sick, he stayed where he was two more days.” John 11:5-6

I’ve always wondered why Jesus waited. I’ve heard many things said about this over the years. Recently I’ve developed my own theory. It’s not easy when the people we love get sick. It is overwhelming, we feel inadequate and we don’t know what to do. We go to all sorts of places in our heads. I know I do. I tell myself that the sickness will pass, that it won’t be serious, that people know I am busy and they won’t expect me to help. I think of all the other people that I know who are helping and I go to a place of denial. I pretend that it isn’t really happening. Denial is a wonderful way to ease our conscious. We make all sorts of excuses don’t we!

We know that when we wade into a situation, when we become more informed, then we are going to feel responsible to help somehow. We already feel responsible for so many things and the burden of another person’s problem is too much. Maybe Jesus thought that if he waited a bit longer the situation would pass, that somehow Lazarus was going to get better without him having to intervene. I read this passage the other day and for the first time I realized that going back to Judea was difficult for Jesus. I know this because when he finally decided that he should go to see Lazarus, his disciples said, “a short while ago the Jews tried to stone you, and yet you are going back there?” I love Thomas. He said, “Let us also go, that we may die with him.”

Maybe Jesus was anxious about going back and what it was going to be like for him. It’s hard to go back into some situations isn’t it!

When Sam first got diagnosed with Leukaemia everyone wanted to help. Sam’s friends used to say, “Whatever you need just let us know.” What we really mean is, “I have no idea how to help you but if you can think of a way I am willing.” Often we are willing but we honestly don’t know what to do. I remember the nurse who headed up the bone marrow transplants used to say to Sam, “If your friends want to help tell them to donate stem cells.” Back in the beginning I didn’t really know what that meant. I didn’t know then that without stem cells Sam would eventually die. I guess we were like Jesus was about Lazarus. We were completely in faith that “This sickness will not end in death.”

It took us from late January to early May 2009 to discover that the chemotherapy wasn’t enough to cure Sam of Leukaemia. We had done all the preliminary tests to see if Emma or Jack were a sibling match, like the 30% of siblings that are. When we made the discovery that neither of them were a match for Sam we didn’t feel too concerned. We were still ignorant about Leukaemia and how it steals life; we didn’t fully comprehend the risks. When we did finally comprehend that Sam needed a donor to save her life the transplant nurse reassured us that being Caucasian she had a high chance of being successful in finding one. I know now that this chance was 85% because the American and German registries have many donors who are Caucasian. Four months later a donor was found. Sam’s donor had joined the registry in America because his wife’s friend had Leukaemia and he wanted to help her somehow. He wasn’t a match for his wife’s friend but two years after joining the registry it was discovered that he was a match for Sam.

I don’t want to think about what life would be like for us now if that man had never joined the bone marrow registry in the USA.

The other thing the transplant nurse said to us was that when Sam was better we wouldn’t want to come back. She said, “All the young people say they will come back so that they can encourage others that eventually life gets better again, but they never do. It’s too hard,” she said, “you won’t want to remember what it was like here.”

Those words stuck in our memory and recently Sam and I decided to go back. We felt sick with anxiety even parking the car. The cool wind in the forecourt at the entrance to the hospital was chilling. We waited for the lift in silence and we laughed in recollection when it got stuck on level 8. “They still haven’t fixed that,” Sam said and I held her hand to ask if she was okay. We didn’t really want to go back. We didn’t really want to face the corridors where we waited for 8 months for a donor to be found but we did want to say thank you to amazing nurses who helped us get through.

We made our way round to the ward and saw our favourite nurse heading towards us. “Oh Gawd,” she said, suddenly recognizing Sam as if she were a ghost. It is nearly two years since we transferred from RNSH to St Vincent’s for the transplant. “You said I’d never come back,” Sam said, “and I was always determined that I would.” They hugged and chatted, shared stories and updates. I stood watching the exchange immensely grateful for my daughter’s life.

Going back isn’t easy but sometimes it saves lives. I am reading “Half the Sky,” by Nicholas D. Kristof and Sheryl WuDunn, it talks about human trafficking and tells the story of a girl called Rath who escaped one of the brothels. When asked if she would go back to Kuala Lumpur to try to help locate the brothel so that some more girls could be set free the author says “she turned ashen. ‘I don’t know,’ she said. ‘I don’t want to face that again.’ She wavered, talked it over with her family, and ultimately agreed to go back in the hope of rescuing her girlfriends.”

Sometimes going back to the place where our lives were threatened brings freedom to others. Jesus told his disciples, “A man who walks by day will not stumble, for he sees by the world’s light. It is when he walks by night that he stumbles, for he has no light.” John 11:9-10

When we return we have knowledge we didn’t have when we were in the situation and that knowledge is vital to helping others be free. When Sam was first diagnosed we didn’t know that without an available donor many Leukaemia patients die. We didn’t know that the Australian Bone Marrow Donor Registry was small or that Australians of mixed heritage are very unlikely to ever find a match. We didn’t know that we would walk the corridors with people who had their whole lives ahead of them only to watch their names erased from the white board beyond the nurses station because their donor was never found. We didn’t know then that it was simple to become a bone marrow transplant donor.

In the beginning we thought bone marrow donation was a barbaric painful operation that involved drilling into the hip bone. We know now that to become a bone marrow donor initially involves giving a small sample of blood. We know that this blood is ‘tissue-typed’ and the information goes into a computer system to see if anyone in the world matches this sample. We know that it could be a week, or a month, or a year or even a few years before they ever find someone who matches the donor. We know that one in 1000 people who donate stem cells may never find a match but if they are a match we know that giving bone marrow is now almost as simple as giving blood. It’s a lot of blood. It may take about 4 hours to give but you will go home afterwards feeling a little tired but I dare say very pious that you’ve just saved a life. You could save a life right now.

As a result of Sam and I going back we also know that there is a boy at RNSH right now who is desperate to find a donor match. For the sake of his privacy we will call him Dan. He is young like Sam and his mum is on a mission to find him a donor. You never know, you could be his match but unless you go to donate stem cells he could be the next name erased from the white board.

When I read about Jesus returning to visit Lazarus the other day I saw the story in a whole new light. Sometimes I forget that Jesus was just like me when he walked the earth. He gets what we are going through. Hebrews 4:15 reminds me, “We do not have a high priest who is unable to sympathize with our weaknesses, but we have one who was tempted in every way, just as we are – yet without sin.” When Jesus got to Judea he told the disciples to roll the stone away. He waded right in to the depths of the dark cave where death was. It would have been so much easier to just ignore it, to have stayed away, to have gotten on with his life but Jesus knew Lazarus life could be saved.

Is there a situation that could be saved if you were prepared to wade back in?

Can you donate stem cells? More information here.

working together

I was already awake when her call came. My intuitive mother voice had woken me, or was it the fear that hovers over my subconscious mind when things going even mildly wrong? I‘m trying to learn to face me fears, instead of trying to outrun them with activity in the hope they’ll never catch up. I’m practising being still long enough to remove the things that render me powerless, to tackle things headlong and release myself from fear’s grip.

For the last week Sam’s eyes have been sore and the voice in my head tells me that the GVHD is getting worse, that we won’t be able to lower the drugs. I’ve just emailed a friend rejoicing that this has been the first time ever that we haven’t had to dash back to the hospital between visits and suddenly it seems I spoke too soon.

At first I could not understand what Sam was saying, her words were muffled by her own anxiety.

“Slow down. I’m up. I’m coming.” I tell her. “Is it your eyes?”

“No it’s my hand, it’s completely numb.” I throw on jeans; rush to her room and after lathering her hand in soap and then smothering her fingers in oil we establish that the only way to get her throbbing hand back to normal is to take her to emergency and cut off her ring. She explains in the car that she slipped the ring on before the party last night. She’d never worn it on that hand before and it only felt a little tight at the time. She woke in the early hours with the loss of sensation to her hand, like pins and needles and noticed the ring squeezing her finger making it swell and throb.

In emergency, we were the only ones there but still we had to wait. I felt my desire to take control of the situation burn within me. I’m frustrated. This week I’ve had two encounters with challenging women and this morning in emergency was my third. I’m very aware of feeling powerless and I am tempted to take matters in my own hands but I am also trying to hear God’s voice, to learn the unforced rhythms of grace, to keep company with God and learn to live lightly and freely. (The Message. Matthew 11: 29 – 30). I’ve been trying all week to draw the distinctions between the women that God anointed and those who stuffed up. I want to be in the category of the former and I’m having lots of opportunities to practice. I’m not enjoying this at all.

I’ve read about Eve (Genesis 2), Sarah (Genesis 18), Rebekah (Genesis 24 & 27), Deborah (Judges 4), Ruth and Naomi (Ruth 1), Hannah (1 Samuel 1), the widow (1 Kings 17), Jezebel (1 Kings 21), Esther (Esther 2 & 4), Mary and Elizabeth (Luke 1 & 2) and Mary and Martha (John 11).

In my early morning research I’ve been trying to identify the patterns, to draw distinctions and to create theories. From my own life experiences I’m learning that things work out best when I prepare, when I listen to His voice, when I let go, when I serve, when I consider the needs of others, when I seek understanding, when I am patient and when I am still. Yet even in the knowledge of this there are things that trigger the wrong response in me causing me to take matters in my own hands, to react, to speak up, to be angry and to take control.

This morning I was angry when the lady at emergency told us to wait, that she had no ice, that there was an order for things. Brene Brown says, “Powerlessness is dangerous. For most of us, the inability to effect change is a desperate feeling.” All I wanted to do was to get that ring off Sam’s hand and there was nothing I could do. There was nothing I could do when the woman at the gym told me I needed to listen to her presentation before I asked any questions about joining, there was nothing I could do when the woman putting her baby in the car next to mine knocked the door of my car with hers then accused me of crashing into her, there was nothing I could do when the registration for the conference I wanted to attend was closed. Sometimes there is nothing we can do and in the place we are confronted with choice. Fortunately for me my morning readings have illustrated loud and clear the consequences when we choose to manipulate, conspire, or do things our way. So instead of causing a scene I thanked the lady at the window and sat down.

Sometimes things don’t fit do they?

We don’t want the circumstance we are in. We want to take control, we want to change things, we want the dainty ring to slide off easily. We want to know how much it costs to join the gym before the spiel, to convince the woman who is irate and accusing us, that it wasn’t our fault. We want life to flow seamlessly. We don’t want it to challenge us and make us uncomfortable.

When things don’t go the way I plan I feel a wall slowly rising from the pit of my belly stopping only when it is over my heart. A protective valve operates within me, it’s triggered by discomfort and the shield covers me, it changes me. I become defensive. I feel stuck. Blood rushes to my face in the same way I see the blood causing Sam’s finger to swell. I can’t think straight. Instead of kindness, gentleness and self-control all I can hear are all the reasons why I am right and why the situation is so wrong.

Once a month I meet with women who love me. We share food, we laugh, we discuss God’s word, we talk about our fears and we pray. My heart is unravelled in this place and the stone is turned to flesh. (Ezekiel 36: 28). I arrive home, undone, exhausted but free.

The nurse in emergency has no success removing the ring and decides to call the fire station instead. When we arrive there are three men ready to welcome us. One offers us tea as the others set to work with the tools. They demonstrate the ringing of the bells and I am not sure if it is routine or not but I think it is fabulous and I wish I had my Kindy class with me.

Slowly the gold is ground away so there is a crack in one side of Sam’s ring. Some of the swelling is alleviated but getting it off still involves more work. The band is not loose enough to slide off, so one of the men weaves string under the band forming a loop, then again at the other side of the break they have drilled. Together they pull until the band is stretched and able to be removed. Then when she is free they laugh and pass Sam a fireman teddy as a momentum for the visit.

Driving home I think how fortunate we are if we have people who surround us, who help us, who tenderly work with us until the things that limit us are removed from our life. I think about the power of kindness, the delight of laughter and the warmth of tea. I feel grateful that even something as beautiful as a rose gold ring became cracked and pulled out of shape so that my daughter’s hand could be free. I consider my need to be vulnerable and broken enough that God can use my life as well.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
Leonard Cohen

http://souvenirstogo.tumblr.com/

You learn a lot about life in the hallways, the corridors and the waiting rooms. You learn as you wait to order coffee, to pay for groceries, to see the doctor. You learn as you sit with students on icy linoleum floors outside exam rooms cramming that last bit of info into your brain. You learn what you know and what you do not. You learn that eventually your number will be called and in that moment you must be ready.

In those moments of waiting all your egocentric thoughts race around your head and you wish you held a microphone in your hand. If you did you could announce that you are running late, that you don’t have much in your trolley, or ask if you could give a practical demonstration rather than a written paper. You are convinced that if there was, you could show them that you know what to do. You want to justify your rights and your reasons. You want to state your case, be given special consideration; you want to charm them into letting you go to the front of the line or to escape the process entirely.

If you are anything like me, you verbalise these emotions with the person next to you. Since there is no microphone, you whisper that you hadn’t expected the queue to be so long at this hour, or that this is the third time you’ve been to the store to get all the things you forgot, or you look at the papers in the hands of a fellow student and feel the blood drain from your face. You realise you have completely forgotten its content. Then within moments you discover that the person beside you has a story too.

The magic begins as you find a common thread and for a brief moment in time you find yourself conversing with a complete stranger. It is like you have been friends for years. You recommend a coffee they haven’t tried, you mind their spot as they rush back down the aisle for one last thing, you exchange an acronym that’s been really helpful for remembering some of the content for the paper and suddenly the dull boredom of waiting has become a fun adventure.

It’s tempting to think that waiting is a waste of time. You think of all the places you could be, all the things you could be doing; but instead you are stuck, immobile, frustrated. Mostly we just want to get on with the business of living our life, but God stops the action to get our attention. I’m beginning to realise what a privilege this is. I never could have dreamt that anything good could come out of my daughter’s Leukaemia diagnosis. I used to lie to her and tell her that one day we would understand and that it would all make sense.

The truth was I had no idea if we would gain understanding and even today it doesn’t make sense. Yet in the shadows of grief I see His faithfulness standing with me like the horses that Zechariah saw “standing among the myrtles.” (Zech 1:11). Throughout this never-ending journey, He has never left my side. Just like the prophet I have never stopped asking questions, confident that one day I will ask at the right time, in the right way and all will be explained.

In writing class my teacher talks to us about subtext. She says that books, like life, have a linear form. The text appears as a line on a page. In some ways the novice writer feels contained by this line in much the same way as one does in real life when waiting for their turn.  Sometimes you feel you have no choice, you are tied to time. She encourages us to develop our skills, to discover the tools of the great writers that went before us. “Create interest for the reader,” she says, “by learning to skillfully use foreshadowing, seeding and flashbacks. You need to know your chronology, but you do not need to show it in chronological order. Use flashback to show us something before the story even begins.”

I ponder her words as I reflect on my personal journey and again I rise in the morning to start my day with the finest of writers. As I languish over words I feel His kiss, damp and fresh like soft dew. “Look,” He whispers, “let me show you what I’ve been seeding all along.” He entreats me to follow the lesson; I hear Him laughing because He has used a word I’ve only just begun to understand. I am comfy on the couch with my tea; the steam from the cup is warm upon my face and He positions Himself right in front of me on the coffee table so that I don’t need to move at all. I’m not sure at first what He is getting at. I’ve read this story a thousand times and though I love it, I don’t see anything new.

In my Bible Reading Plan, I am up to the women of the Bible. I find this amusing because on my Kindle reader I am also up to reading “How I changed my mind about women in leadership,” by Alan F. Johnson, and as the circumstances of life would have it I have also just taken a small block of teaching in an all-girls’ school. Maybe it is coincidence or maybe it’s part of the plan. I don’t spend too long wondering about this. It is what it is, that is all. I read the story of Deborah in Judges 4 as I have done many times before; but for the very first time I notice where the seed for the story is planted way before the battle begins.

God is with you before the battle. He has a plan for your life. He didn’t pick you at random to fight the thing that you are facing. He didn’t want to take you out, or destroy your life, or cramp your style. He knew from the day you were born, the things you would be capable of and the things you would discover if you kept Him close for the duration of the journey. He knew the experience would shift you, terrify you and humble you. He knew you would want to run; that you didn’t think you would make the distance. He knew that you would have passed the baton earlier if there were any way you could; but He also wanted to show you the stuff He placed inside of you. He knew that you had exactly what would be needed and there was no one else on the planet that could do it like you did.

He knew that you hated waiting in lines, being inactive and taking tests but though He measured you, He became the wall around your life and the fire within you that never went out (Zechariah 2). He sent people because He knew that it would delight you to make new friends and though they were not the people you expected to come, they cheered for you in ways that helped you believe the same things He had told you all along. He understood that being human you would hear His voice better in another human voice, so He carefully selected people who were nothing like you. Even that got confusing at times. Sometimes you got so down on yourself you couldn’t really believe that people would care so much to stick with you for so long and you weren’t sure how to behave; you wanted to release them, to not be a burden.

Sometimes all we see are the reasons we are inadequate and why someone else is so great. We forget that in God’s grand plan, He promised to use everyone who was willing according to their gifts. It doesn’t matter if we don’t have it all together because in a moment He can come along and move something so small as a decimal point and give 0 a whole new place value. Sometimes He needs to get you from Kindergarten to Year 4 maths to remind you it is so. He knows you learn through seeing, that you prefer hands-on experiences and that hearing a lecture has never taught you anything. Over the last few years you wish hearing about other people’s suffering had been enough for you to learn the point but not you. You had to experience it first hand; but in doing so your understanding of life and compassion for others has gone to whole new level. You know that you would do whatever it takes to ease the journey for someone else. Through it all, He reminds you that you have everything you need, that it takes a variety of talents, personalities and courageous acts to get a job done.

When your essay comes back from Uni with the words “I love your writing style but this is not an academic essay,” even then, He finds a way to encourage you, to remind you to never give up. You find an article about AS Byatt, the great writer and discover that she too was led to believe that she didn’t have what it takes. She explained that in the summer of 1959 she was married and at the same time was working towards her doctrine of philosophy. Her supervisor, Helen Gardner, advised her that as a married woman she would have her grant withdrawn; had she been a man it would have been increased. After this conversation, “in a state of pure rage,” Byatt said, she went to purchase the whole of “A La Recherche du Temps Perdu,” in French. Reading all through summer, she came to the revelation that she was a writer, not an academic.

For centuries women have felt that they had much to offer and yet the words of others, life experiences or religious mindsets about their role have held them back. How grateful I am to have the greatest advocate for women sit with me in the mornings and teach me from His word. He knows I don’t learn in isolation and so He leans forward, placing His finger on the page. There in Judges 4:9, He shows me that even though Deborah, the leader of Israel, tried to empower a man, she prophesied that “the Lord would hand Sisera over to a woman.” He looks me in the eye and smiles. “You would have expected it to be Deborah wouldn’t you?” he winks, “but I just look for someone whose heart is fully mine.” Religion tells us that women must wait for the permission of men before they do anything useful, but God never saw it that way. He came to place value on women so that the enemies’ plans would not succeed.

It really doesn’t matter who you are or what you think you are good at. Maybe like Jael you will woo the enemy with a blanket and a warm glass of milk before you drive a nail through his head. God didn’t chose Jael because she was female, He chose her because the man who was Deborah’s first option was afraid.

In the hallways, in the corridors and in the waiting rooms, you discover people’s stories. When you hear them you see the common thread that links all of our lives. When you hear that the person next to you has the same diagnosis as your daughter, you see that we are all afraid and desperately wanting to hang on to life. You find that community is built over cups of coffee, saving spots in queues and exchanging ideas that might help.

You forget that you are supposed to be dignified, or to apologise for being female; and when the enemy comes close to your tent you do the thing that you were created to do. You crush his head because back in the beginning God told you that you were able and when He sent Jesus to the cross He broke the power of the curse against you. You realise that you are neither trapped nor afraid, that He has placed in your hands the very thing you need to get the job done. You see that He laid the seed for the next chapter of the story a long way back; you simply never noticed the words on the page. You flip back now and you see it. Your eyes glaze over, your teacup is empty and you head for the shower. It’s another new day.