Monthly Archives: September 2009

Where there is ruin, there is hope for treasure (Rumi)

This blog was written on my iPhone beside my daughter’s bed in September 2009. At times I have been tempted to return to it, as I am now…to edit it, to create neater paragraphs etc. but each time I do, I decide that I like how raw and informal it is. It is not a polished piece but rather the desperate cry of my heart.

 

‘Where there is ruin, there is hope for treasure.’ (Rumi)
When we come to the end of ourselves, to the place where there is no hope but God we are well positioned for miracles. He is leading us through the darkest of caves or the depths of the sea. He didn’t cause the ruin, he didn’t send the storm, he didn’t abandon the ship, he didn’t leave us to suffer.
He was and is and is to come. The same yesterday, today and forever. (Hebrews 13:8) When Jesus walked the face of the earth. He went about doing good, healing the sick and all who were oppressed by the devil. (Acts 10:38)
God is good all the time. When we put our trust in Him we will not be ashamed. To us it looks like the waves will swallow us up but He speaks to the wind and the wind obeys.
Sometimes the treasure is hidden. At first we don’t know it’s there but there is hope like an invisible thread. We seek, we follow where it leads. We hold on working our way down the line, one hand after the other; never letting go of it’s strand. It’s too dark to see it but we feel it’s there.
Sometimes hope is all we have but it’s enough.
Hope is an anchor to our souls. (Hebrews 6:19) It holds us fast though we feel like we are drifting. Though the waves still leap and curl into the boat. We get wet, we are shaken but we do not drown.
A thousand shall fall at our side but it will not touch us. (Psalm 91)
I’ve watched the transplant patients all year. I’ve watched them leave hospital frail and thin. I’ve seen them wheeled out under grey sheets, lifeless, dead.
I’m no fool. I know the possibilities but I also know the mighty hand of God. His arm is not too short that it can not save. I choose to put all my trust in Him.
I am Caleb. I have seen the land God gave me to possess in my youth. ‘I wholly followed the Lord my God. And Moses swore on that day, Surely the land on which your feet have walked shall be an inheritance to you and your children always…

I am as strong now as I was the day Moses sent me; as my strength was then so is my strength now for war to go out and to come in. Joshua 14:7,9,11)
Last week I held onto my hope until the rope burned through the palms of my hands. The enemy pulled one way in the tug of war but I had my father and a host of people praying. We tugged and tugged until we landed heavy on the ground, relieved by our win. Here is the battle recorded for those who took part on that endless rope. This is the victory we won:
The fevers that spiked early last week did not subside. The icy cloths that I bathed Sam in, soaked up her heat and warmed the water I drenched them in, melting the ice in moments. This went on hour after hour, through the days and the sleepless nights only to get worse, the temperatures soaring and the unspoken concern intensified in the doctors eyes.
Without alarming me, without changing the tone in their voice they told me they would send the pain team to make her as comfortable as possible. Then they told my they would be prepping the team in ICU in case they should need to move her there. In the meantime they gave her every conceivable drug and blood product through the three tubes on her central line.
Her body was completely covered from head to toe with rashes worse than I’ve ever seen. Worse even than the anaphalactic rash she had a few months ago after asparaginaise.

Her tongue was swollen thick with the effects of mucositis and it was hard to even swallow her own saliva. Her calloused lips seemed to be hinged together with strands of beige chewing gum as she opened and closed them so anxious for breath. Her nose was sore and encrusted with dry blood.

When they were satisfied that they had pumped her with enough anti biotics to fight infection then fresh frozen plasma (FFP) to make it ‘safe’ they took her to theatre to take out the central line in her left shoulder and reinsert one into the right side of her neck.
Her temperature reached 40.4 by midday on Friday the 11th of September and they said she was septic.
I knew as I left the theatre room that it might be the last time I would see her alive. At least that is how they’d prepared me.
Exhausted, I swallowed the knot in my throat and fell weak into Reid’s arms. We didn’t speak about the possibility of death. Instead we sent messages to friends to pray. We spoke of Gods tremendous grace. I shared with Reid how the night before I found myself singing that old hymn I had sung as a child about the horse and rider being thrown into the sea. (Exodus 15) I shared the comfort I’d found in the knowledge that God is able to prevail; regardless of what we see with our eyes. It looked like a dead end that had us cornered. A mighty sea in front of us, an army of enemies at our back but God parted the sea and the Israelites went through on dry land and then the sea drowned those who were pursuing them
It seems this theme of crossing over has invaded my thoughts these last weeks. I turn this concept over in mind eager to draw every possible truth out of this lesson. I am searching for treasure.
I know God wants me dead in such a way that I can be alive in Him. To hear His voice over my voice, to speak His words that fuel my faith instead of speaking what I see. ‘Not my will but thine be done.’ The words of Jesus in Gethsemene remind me that He paid the price He did not deserve to pay that I could have the life I did not deserve to live. This truth alone positions me in praise and I worship Him for giving us life.
‘Who is like unto thee, O Lord among God’s? Who is like unto thee, glorious in holiness, worthy of praises. Doing wonders. Who is like unto thee?’
All night long I had sung that as I bathed her and watched the sky over the city, turn from black, to navy to the powder blue light of day,
Reid and I walked wearily back to Sam’s room to wait and fell asleep in the chair. All of C3 church had prayed the night before at #LoveSydney, friends twittered photos and words of encouragement. He holds her in His hands. I put my trust in Him.
I woke moments before the orderly wheeled Sam back in. Not long after that, her specialist arrived to check on her and tell us that even though it’s his weekend off he’ll be monitoring the blood results all weekend from his home computer. He tells us the on call haemotologist will be here and available, that Sam will be receiving steroids and other IV meds through the night.
‘She’s a very sick little girl.’ he says. We are doing everything we can. He took his time, he knelt by her bed, he answered my questions. I told him, ‘I’m no expert but could this be GVHD?’ He was so gracious, actually he said, ‘You are an expert. You’ve been by her side all year, you’ve monitored her every moment. You know what she reacts too, her responses. You’ve been a great help.’ I felt so validated for my role as Sam’s mum. ‘Our concern,’ he continued,  ‘is that we think it is GVHD. But she’s too early to be engrafting and she…’ ‘Has no white blood cells.’ I finished his sentence with tears in my eyes.
‘Yes, so we are going to give her GCSF and we are going to do her obs every 15 minutes. ICU are ready to receive her anytime but we want to keep her here due to risk of infection in ICU.’
He gave us time to mentally digest his words. We stood in complete silence. Then when are eyes all met, he nodded and left.
The drugs began to take effect making Sam drowsy. The fevers subsidied but in their place hullicinations and dark dreams invaded her thoughts. As she spoke from her drug induced sleep the terrors of the night held her captive. She was anxious, she couldn’t find me, she wanted to know where she was. When she woke she saw patterns on the walls that were not there, her eyes glazed over like one possessed.
By Sunday she retold her dreams with heavy sobs from all she had seen. Dark, dark dreams, so vivid, so real.
Her eyelashes now have disappeared, along with her eyebrows and hair. Her face, her tummy, her legs, her ankles, even her eyelids are swollen from fluid retention.
I hear the enemy mock me. His distant evil laughter. He thinks he can crush my spirit. He thinks I will not believe much longer in the hope that I have.
But he is fooled. It is no longer I that live but Christ who lives in me. (Galations 2:20)
We pray together. Grant and Reid and I. We sit on her bed and we pray. ‘For the weapons of our warfare are not mere physical (weapons of flesh and blood) but they are mighty before God for the pulling down of strongholds. We refute arguments and theories and reasonings and every proud and lofty thing that sets itself up against the knowledge of God and we lead every thought captive to the obediance of Christ. (2 Corinthians 10:4-5)
Then her thoughts began to settle, she is calm. She sleeps deep in her mattress for days.
What I see with my natural eyes brings fear. I feel like Lazerus sisters. I wonder why he came so late. I wonder why I had to wait. I wonder why I have to carry this load.
But I don’t wonder for long. I feel his hope again pulsing in my hands. I hang on, making my way to the depths of His love. The treasure is there in the waters. His life infuses breath into me. He takes me to places I’d never have sought to go. My life entwined in Him. He lifts the heavy lid of the chest revealing precious truths of His faithfulness.
Yes, ‘I shall see and be radiant and my heart will thrill and tremble with joy (at the glorious inheritance) and be enlarged: because the abundant wealth of the (Dead) Sea shall be turned to me, unto me shall the nations come with their treasures.’ Isaiah 60:5
It’s not just for me. It’s what God has promised to this generation.
Isaiah61:4 And they shall rebuild the ancient ruins; they shall raise up the former desolations and renew the ruined cities, the devastations of many generations.
Surely the church is entering it’s finest hour. We will see miracles.
On Monday, when the team of doctors came they came rejoicing. They came to tell us how well Sam is doing. I asked ‘have you looked at her?’ To the natural eye it seemed a foolish report. We will look at her but most importantly we look at the blood. The true results are in the blood. The white blood cells are up. Sam you are engrafting.
There’s a bubble trapped in the depth of my stomach (must be all that deep sea diving). When the doctors leave the room it manifests in crying. ‘Sam, it’s a miracle. You are engrafting. You are getting better.’
Everyday she’s improving. God is faithful. We will sparkle like jewels in His crown. (Zechariah 9:16)

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Twists and Turns

Jacaranda vine in hospice garden

On one of our many journeys back and forth to hospital I found myself discussing with Sam how she first learned to ‘spot’ in ballet.

We laughed together as she expressed her recall of going to school in a loose hair elastic and realising by recess that it wouldn’t be a good afternoon at dance class. A loose elastic meant she would be distracted through all her turns that afternoon because if her elastic wasn’t tight, no matter how many pins she fixed around her bun, it would still feel wobbly at the part of her scalp where all her hair was scooped together in one loose elastic.

We laughed that a loose hair elastic would probably be a good problem to have right now. Instead of hair elastics she tightens the clips inside her wig to make sure her hair stays in place on her bald head which is beginning to grow a soft, downy fur of new growth.

Regardless of the loose hair elastic, pose turns and pirouettes had to be practiced religiously. Sam had the ‘old school’ style ballet teacher who insisted on perfection without excuses and drilled her students until this standard was reached. Fortunately for Sam her demi- plie was regarded as one of the most beautiful in the dance school and her teacher thought both she and Emma had beautiful feet.

To pirouette, they were taught to stand at the rear corner of the room in fourth position, left foot in front of the right, hips and feet turned out; arms loose in front. After a releve, they were told to concentrate on one spot in front of them and commence the turn. They focussed on that spot until they could no longer keep their head forward, then they would turn their head around to focus on the spot again as they finished their revolution. It seems, this art of spotting, after much practise prepared them for multiple spins and turns without ever getting dizzy or loosing grace or stance.

This conversation with Sam has been stuck in my heads for weeks as I consider the dizzy journey I feel I am on this year. Ever since her diagnosis I have had to remind myself daily to ‘fix my eyes on Jesus.’

Philippians 4:6-8 Do not fret or have anxiety about anything, but in every circumstance and in everything, by prayer and petition with thanksgiving, continue to make your requests known to God. And God’s peace [shall be yours, that tranquil state of a soul assured of it’s salvation through Christ, and so fearing nothing from God…the sort of peace that shall garrison and mount guard over your hearts and minds in Jesus Christ.

If I lose my focus for a moment I find myself unable to keep going. Instead I hear the complaints loud in my head about how unfair this journey is, how tedious, how tiresome. I don’t want to go back into that corner, choose me focal point, prepare my feet, position my hands and start the turn. I want to sit for a while, I want to enjoy someone else performing the dance.

Still God reminds me of my passion to know Him, the prayers I have prayed. I didn’t think obedience would require this. Would I have said “Here I am, send me” if I’d known it would require this path? When we lost money on the house and in business; when I broke my leg in the car accident, when God challenged us to walk away from ministry and trust Him to give it back in His timing somehow it was so much easier to agree with Paul, “I count everything as loss compared to the possession of the priceless privilege of knowing Jesus Christ, my Lord.” This year however as I’ve spent days by Sam’s bed, waiting for her to wake from a bone marrow biopsy, a lumbar puncture, or to shake off a fever I have had much opportunity to ‘know God.’ In the stillness, in the uncertainty of it all He has truly become all that I have.

There have been many opportunities to fear for Sam’s life but as Paul writes, “Whatever is worthy of reverence and is honourable and seemly, whatever is just, whatever is pure, whatever is lovely and lovable, whatever is kind and winsome and gracious, if there is any virtue and excellence, if there is anything worthy of praise, think on and weigh and take account of these things [fix your minds on them].

It is only when I have determined to find Jesus and his incredible goodness that I am able to start the dance again. I know that He is training me. I know that He is teaching me to dance. He is showing me not to wait until the storm is over but rather how to dance in the rain.

I have watched my daughters progress from the adorable routine of primary ballet where the exercises focussed on the hands, and the feet in isolation before the moves ever became a dance.

I watched them grow and discover how to find synergy with the music. I saw them become light and graceful on their feet as if they were one with the music. Completely entangled, bonded in harmony with it.

Eventually the time came for the stage, the costumes and the lights but such was their love of dance that they would dance wherever they were. They would pose turn down supermarket aisles, they would pirouette in their pyjamas, sometimes they forgot where they were and would only stop because they saw me smiling and realise what they were doing.

How amazing to be so caught up with the music and the passion that to dance could come so naturally. This is what I strive for now in my relationship with God.

For days, Sam has been fibrile neutropenic. This means she has fevers over 38 and no capacity to fight infection. The consistent fever indicates she has an infection somewhere in her body but as yet the blood cultures that were sent to the lab haven’t revealed anything.

As I sponge her head with face cloths soaked in ice I look out the window over the park to the hospice garden. There beyond the chapel is the most magnificent display of wisteria vine I have ever seen. From my vantage point on the 9th floor the trellis it clings to is covered like a purple carpet.

I’m reminded of John 15, where Jesus instructs his disciples to cling to him like branches on a vine. He tells them that the branches that do not bear fruit will be snapped off and burnt in the fire yet those that are bearing will  be pruned so they can bear more fruit.

Pruned branches look lifeless and dead but they are simply dormant for a season. My life feels like that this year. I feel like an ugly stick that is waiting to bear. Waiting, I’ve discovered has many meanings in Hebrew. One of which is ‘to bind together by twisting, to be joined.’

Late yesterday Emma came on the bus from Uni to see Sam and I at St Vincents. I met her on the corner of Oxford St and asked her to come with me to look at the wisteria in the hospice garden.

As we walked beyond the brick walls and into the garden the fragrance overwhelmed us. In the centre of the garden a gentle waterfall bubbles. It’s incredible. Then we stood under the wisteria vine and Emma remarked that it was like a tapestry. All messy and tangled yet from above the flowers were so beautiful spreading their sweet aroma heavenward.

‘Thanks be to God, who in Christ always leads us in triumph and through us spreads and makes the fragrance of the knowledge of God everywhere.’ 2 Corinthians 2:14

I’m praying that in this year of waiting; this season of pruning that my life has become entangled to the vine. That every twist and turn of the journey is wrapped around God’s purpose. That, even though my nights are sleepless, my hands, cracked and dry (this week) from hours spent dipping cloths in ice water. Even though this is not a path I would ever have chosen that somehow God would turn it around to bring forth a branch connected to Him and bearing much fruit.

More than that I pray for Sam that the year that seemed to put her whole life on hold would in fact catapult her into a magnificent future. That God ‘will give her back her vineyards and will make the valley of weeping a door of hope. There she will sing.’ Hosea 2:15

On September 3rd, the day of the bone marrow transplant two friends came to St Vincents at 7 am to pray in the chapel for Sam. Afterward they sent a note to our room. It read ‘as we prayed we saw the new stem cells delight in Sam’s body – every nook – everything new and fresh. They love it so much they dance through it.’

T.S. Eliot writes ‘ except for the point, the still point, there would be no dance and there is only the dance.’

May we be so entwined in God’s purpose that every twist and turn from this moment be pleasing to Him.

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Where the Wild Things Are

In my dreams a few nights ago I found myself rehearsing ‘Where the
Wild Things Are’ by Maurice Sendak. I almost know it by heart though
it’s a long time since we read it together again and again till the
spine sagged on its stringy binding and the cover finally dropped
off. It was Sam’s most favourite book when she was 3, closely followed
by ‘There’s a Hippopotamus on Our Roof Eating Cake.’ I think I can
still recite that as well.

The words and images that invaded my dreams woke me up, so I decided
to lie there and analyse the text, the meaning, the writer’s purpose. I
looked deep in my memory to find the Teachers College file where I was
sure a paper existed, subtitled ‘Children’s Literature’.( It was one of
my majors back in the 80s. Our lecturer Clare Scott- Mitchell, with
her hyphenated name and the plumb in her throat, made me feel as
though I sat amongst the great minds and thinkers of my time. She was
the hinge that swung open the door to my passion for children’s books-
a door I hope I’ve ushered my  little students  through as  well.) I love
children’s books and children’s films. I love the simple images  they use
to convey such powerful truths.

As I ponder the story of Max, I see the similarities with Sam- little,
fiesty, strong, unintimidated and not afraid to stand up for herself.
Of my 3 children, Sam is the one most likely to answer me back or
question my authority. When she was small, like Max, she also got sent
to her room for being cross and cranky. The deal was that she could
come out again as soon as she was happy. To my delight, her sweet
little voice would ring down the corridor eventually, singing, “I’m
happy now!” I imagine that in her room a forest also grew, that the ceilings hung
with vines and the walls became the world all around. Sam has always
had the capacity to focus, to create and to escape.

Taking her into TBI this week has been the most excruciatingly painful
emotion that I think I’ve had to deal with as a Mum. It’s total
isolation. Each time they put her into the perspex cylinder (packing
her in with bags of rice to shield the parts of her body that should
not be lasered, tying her legs together by her knees, taping her feet,
weighting her arms so she cannot move), they remind her that the
worst part is the sense of being alone.

And I hear God remind me, as they do this, that she is His daughter,
mine on loan. I have to let go, I have to trust Him, I have to leave
her on the altar, time and again.

As I say ‘goodbye’ the bed is elevated so it’s above my head,
they line it up between the cross shaped laser lights, they wheel her
in place, they turn up her CD, they turn out the lights and it’s time
to leave her. Just like Max, an ocean tumbles by with a private boat, this time
marked for SAM. This is a journey just for her. I’ve done all that I
can. I let go, trusting God. Just like the Bible story – I am Hannah, she is Samuel,
I am dropping her off at the temple, fully weaned. I think I’ve known all her life
that this moment would come- the huge letting go, between mother and
child but I never predicted it would be like this.

Train your child in the way they should go and they will not depart
from it. How many times in their lifetime does God teach us this?
1st sleepover, 1st playdate, 1st day at preschool, 1st day at school,
1st dance, 1st date, 1st kiss, 1st time driving, 1st day of Uni, 1st
true love. In that list; 1st day of chemo, 1st day of TBI, 1st day of
100 days for body to accept a stem cell transplant were never a part
of my plan.

In all this though, I know that God knew. He knew before He formed her
in the secret place and He’s been preparing her for this moment.
Jeremiah 1:5- Before I formed you in the womb I knew [and] approved of
you [as My chosen instrument], and before you were born I separated
and set you apart, consecrating you; [and] I appointed you as a
prophet to the nations.

I’m not sure where her mind goes in the TBI alone but I’m sure
she’s battling wild things. All year she’s confronted obstacles so
huge that most of us would have lost control by now.
My daughter and I are learning the secret of trusting, of letting go,
of letting God. It’s big for us both but in different ways.
The road ahead is dark, unknown and paved with uncertainty but God is
waiting for us in the dark forest. The Bible says, ‘fix your eyes on me,
the author and perfector of your faith.’

With focus we reach our desired goal and above all things that goal is
to know God and the power of His resurrection. The same power that
raised Jesus from the dead, lives in us. The world comes at us hard to intimidate                                                             and overwhelm us but we do not fear, He has overcome the world.                                                                               The peace He gives, is not as the world gives. It’s uniquely tangible and on this
shore, as her boat sails past, through weeks and days, and in and out of months to the
place where the wild things are, he holds us close.

I am convinced that cancer is a wild thing that has crept into the
world to dominate and crush us. It’s taking lives, day after day. I
hear the call to rise. I’m asking myself if I’ve been too comfortable,                                                                               have I rested too  much, have I been so concerned with my own life                                                                             that I’ve not cried out and made my God and His earth my priority?

Zechariah1:11- And the men on the horses answered]the Angel of the
Lord Who stood among the myrtle trees and said, We have walked to and
fro through the earth [patrolling it] and behold, all the earth sits
at rest [in peaceful security]

14So the angel who talked with me said to me, Cry out, Thus says
the Lord of hosts: I am jealous for Jerusalem and for Zion with a
great jealousy.

15And I am very angry with the nations that are at ease; for
while I was but a little displeased, they helped forward the
affliction and disaster.

16Therefore thus says the Lord: I have returned to Jerusalem with
compassion (lovingkindness and mercy). My house shall be built in it,
says the Lord of hosts, and a measuring line shall be stretched out
over Jerusalem [with a view to rebuilding its walls].

17Cry yet again, saying, Thus says the Lord of hosts: My cities
shall yet again overflow with prosperity, and the Lord shall yet
comfort Zion and shall yet choose Jerusalem.

I believe that we are called to silence the power of sickness and
disease. I believe we are called to cry out.

Not by might, not by power but by my spirit, says the Lord.

If we align ourselves with Him and allow Him to take us on an intimate
journey, we are trained for war.

In the words of Sendak, ‘Let the wild rumpus begin.’ Lets take back
what the devil has stolen. Let chains be broken, lives be healed. Christ is revealed.

We shall return and supper will be waiting. It will still be hot.

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