Monthly Archives: July 2009

Tests

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After about two weeks of intense training and hands on experience in
the Kindy classroom the day comes for the measurement test. We’ve
spent 45 minutes of almost every day and a few incidental learning
experiences in between drilling the children in the ‘terms of
measurement.’ We’ve lined them up head to head, we’ve taken our HB
pencils around the room and found things longer, shorter and the same;
we’ve cut lengths of string; we’ve read the big book together; we’ve
paced out the playground in giant steps and in fairy steps and finally
we are convinced every child in the class is ready for individual
testing.

There are three key words required for them to get full marks: width,
height and length. One by one we call them and we remind them of all
the fun we have had measuring. “Can you remember the three words we
use the most when we measure?” the question is posed. “Hmm,” the first
little person will respond rocking back and forth from heel to tiptoe,
looking over my shoulder or up to the ceiling, then tapping his
forehead in the hope that it will bring forth the unloading of the
correct answer.

“Is it width, height and ummmm?” struggling with the final answer.

The next child purses her lips and twists them sideways, “I know this
answer, don’t I?” she responds, “Can I just go to the toilet first?”

We don’t like to be tested. Do we? Even when we’ve studied, even when
we’ve prepared for the exam; even when we know it will take us to the
next level. Testing is a drag.

Every now and then a child skips up to my desk when their name is
called, rattling of the three words perfectly: “width, height and
length”, then to check they understand, they must demonstrate what they
mean.

My favourite response of all is when a child stands beside me
announcing confidently “width, height and STRENGTH” so close to the
right answer it even rhymes.

After six months of sitting at Sam’s bed or by her chair while she
undergoes bone marrow biopsies, lumbar punctures and chemotherapy, I
feel like I’ve been tested on so many levels.
My faith in God
My thoughts on healing
My relationship with Reid
My mother guilt
My ability to receive help from others
My selfish desires
My dreams for the future
My judgment of people

I see all my flaws. I am not who I want to be. I’m angry with
difficult and evil nurses. I’m infuriated with the holes in the
hospital system, I’m lacking in strength and reminded of the little
people in my Kindy class. Indeed strength could be used to classify
measurement. Surely God himself has come to measure my life. There are
so many days when I do not pass the test.

I’m tired of the monotony of waiting. I’m discouraged by all the bad
news. My heart has become like a rubber band either stretched
completely or reverberating in heavy pulses on the rebound of shock.

I return to Zechariah again and again finding treasures in God’s word.
I read Chapter 2:

1AND I lifted up my eyes and saw, and behold, a man with a measuring line in his hand.
2Then said I, “Where are you going?” And he said to me, “To measure Jerusalem, to see what is its breadth and what is its length.”
3And behold, the angel who talked with me went forth and another angel went out to meet him,
4And he said to the second angel, “Run, speak to this young man, saying, “Jerusalem shall be inhabited and dwell as villages without walls, because of the multitude of people and livestock in it.
5For I, says the Lord, will be to her a wall of fire round about, and I will be the glory in the midst of her.”

I’m not really sure how this relates to my life in the literal sense
but I feel many walls of my prejudice coming down. Surrounded everyday
by people suffering from cancer is the ultimate wakeup call. My
compassion is increased daily along with the hopeless anguish I feel
on the days when they cart out the dead on beds without mattresses
covered with slate grey sheets. Yes, the width and length of my
experience has expanded. I will never be the same. I pray that God’s
fire will surround me as the walls of my own making crumble on all
sides.

I am constantly humbled in this place, seeking advice from the
qualified. Last week I was wondering if my daughter’s memory would
return, this week I’m begging for blood transfusions. I am desperate
in every way. Fighting for her life. My thoughts go out to the ones who
have no voice to speak on their behalf. (Proverbs 31:8)

I’m finding this journey difficult to say the least but God says to

James 1:2 Consider it wholly joyful, my brethren, whenever you are
enveloped in or encounter trials of any sort or fall into various
temptations.

3 Be assured and understand that the trial and proving of your
faith bring out endurance and steadfastness and patience.

4 But let endurance and steadfastness and patience have full play
and do a thorough work, so that you may be [people] perfectly and
fully developed [with no defects], lacking in nothing.

So this is my hope, that through it all I’m changing and growing and
being equipped. That the day is coming when there will be less of me
and more of God.

He’s teaching me not to judge others because every life is valuable to
Him. On the day we most needed the transfusion and all the nurses were
too busy, it was difficult nurse who reached out to help us.

So I am learning that God gives me wisdom if I ask just as James 1:5
says, “If any of you is deficient in wisdom, let him ask of [b]the
giving God [Who gives] to everyone liberally and ungrudgingly, without
reproaching or fault-finding, and it will be given him.”

No, I don’t like the test but God is equipping me and preparing me just
like I do with my Kindy kids. He knows best the road ahead. He lets
me do it with an open book. His word is my strength, and my obedience
to it is His only measure.

Day by day He increases my ability to grasp His magnificent plan and
when all my strength is gone His gracious words come to remind me
Isaiah 40:30 Even youths shall faint and be weary, and [selected]
young men shall feebly stumble and fall exhausted; 31 But those who
wait for the Lord [who expect, look for, and hope in Him] shall change
and renew their strength and power; they shall lift their wings and
mount up [close to God] as eagles [mount up to the sun]; they shall
run and not be weary, they shall walk and not faint or become tired.’

Last Thursday Sam was sent home after 7 days and nights in 12D at RNS.
It was a grueling week of high dose chemotherapy, an LP and a BMB. One
of the drugs she was given had such severe risk of anaphylactic
reaction, that three doctors, three nurses and a CNC stood by with a
fully stocked resuscitation trolley. Needless to say, I was petrified
watching them administer these treatments. The anti -histamine drugs
given to protect her from the dreaded reaction had negative effects of
their own. Sam has no recollection of those three days. I watched her
try to eat an apple but ramming pieces into her chin instead. She told
me Grant had a new Aunty instead of a new baby niece. She told me she
couldn’t find a song on her iPod when I watching her search through
her emails. She was completely confused for days and the side effects
sheet I was given listed memory loss as a rare but possible side effect.

When her counts return to normal we can leave RNS. We are off to St
Vincents in September for a Matched Unrelated Donor transplant.
For now we have daily blood tests and transfusions. She is tired and
isolated due to her lack of neutrophils but God is faithful, He will
restore her strength and mine.

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Clair de la lune

Matthew 5:16
“Let your light so shine before men that they may see your moral excellence and your praiseworthy, noble, and good deeds and recognize and honour and praise and glorify your Father who is in heaven.”
My parents named me Clare Felicity; it’s a lot to live up to. It means bright, clear, light, illustrious and happy. But for at least a week (probably longer) my heart has been heavy, almost despairing.
The news we got two weeks ago about the need for a transplant, the risks of relapse, the options, the side effects, the possibilities have clouded my mind with such dread. My heart is heavy within me. I cannot speak; I can not pick up the phone. I wish I could erase all this information from my mind and live as if it never happened. I want to go and take her from the hospital and never go back. I want to believe that it’s all over. She looks so well. She acts so strong. How can they possibly be right? How can my precious daughter have Leukaemia? Surely it’s all just a bad dream.
I try to make sense of the things I believe God has called me to do with my life. I want to let my light shine but there is none left in me. I have no light. I have no hope. As my heart sinks heavy in my belly I see a vision of the full moon resting on the ocean. When the sun has set I drive to my favourite look out. I am sure that it will be there to bring me hope but tonight it’s not there. So I get out of my car, because it should be there and I turn around looking up. “Where is the moon? Where is the moon?” I whisper. I can see the distant lights of fishing trawlers out at sea. I can smell the fragrant sauces cooking across the road at the Asian Takeaway, I can feel the evening chill on my cheeks, I can hear the waves crashing on the sand, I can almost taste the salt of the sea but I cannot sea the moon. Has it sunken into the ocean of despair as well?
Isaiah 30:26 & 29
“Moreover, the light of the moon will be like the light of the sun, and the light of the sun will be sevenfold, like the light of seven days [concentrated in one], in the day that the Lord binds up the hurt of His people, and heals their wound [inflicted by Him because of their sins].
You shall have a song as in the night when a holy feast is kept, and gladness of heart as when one marches in procession with a flute to go to the temple on the mountain of the Lord, to the Rock of Israel.”
“You are Clair de la lune – light of the moon.” I hear the Holy Spirit whisper. My knowledge of French is very limited but I know the tune. I have taught music to children for long enough to know this gentle lullaby. Then suddenly I ask my Father, “Does the moon create light, or does it reflect it?” And I hear His thunderous laugh. I feel his gentle arms caress me, like He has been telling me all along. “Let go and let me, carry her. Lean on me, lean not on your own understanding. Do not let your heart be troubled. I have overcome the world. Be still and know that I am God.”
Yet I feel the responsibility is all mine. Mine to be brave, mine to shine, and mine to create opportunities. Earlier in the week a friend sent me this passage but it made no sense until now.
Isaiah 45:5-9
“I am the Lord, and there is no one else; there is no God besides Me. I will gird and arm you, though you have not known Me,
That men may know from the east and the rising of the sun and from the west and the setting of the sun that there is no God besides Me. I am the Lord, and no one else [is He].
I form the light and create darkness, I make peace [national well-being] and I create [physical] evil (calamity); I am the Lord, Who does all these things.”
Who am I to question God? Who am I to think I can make a difference? My responsibility is to trust, to yield, to surrender and obey. I can’t create the light. I can’t even reflect it not unless I spend time with the ‘sun’. It is in His hands and He will deliver me.
Genesis 1:16-19
“And God made the two great lights- the greater light (the sun) to rule the day and the lesser light (the moon) to rule the night. He also made the stars.
And God set them in the expanse of the heavens to give light upon the earth, to rule over the day and over the night, and to separate the light from the darkness. And God saw that it was good (fitting, pleasant) and He approved it.”
In His perfect timing, we will reflect His glory; he will give us government over darkness. Our light will shine because it is His reflected glory. It has nothing to do with my greatness and everything to do with him.
We are created in God’s image to shine for Him. We are formed to bring light into dark places. It is “not by might, not by power but by His Spirit” that enables us. As we cry to the Lord, He will say ‘Here I am.’ He takes us away from the yoke of our oppression. It is He who “causes our light to rise in darkness, our obscurity to be like noon. God guides us continually, satisfying us in drought making strong our bones. We will become like a watered garden and like a spring whose waters fail not. Our ancient ruins shall be rebuilt and we will be called Repairer of the Breach, Restorer of Streets to Dwell In.” (Isaiah 58: 9-12; paraphrased).

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Everest

Dealing with Leukaemia is a lot like climbing Everest. You have two options. You can attempt it via Nepal or you can attempt it via Tibet. Neither option is straight forward. You need to prepare, get the right equipment, the right advice, maybe a team? You study the stats. 10% don’t make it. You weigh up the risks and you decide to invest your life. It takes everything to conquer. At first you don’t think you have it in you. Half way through, you want to stop; you want to pause at base camp. You decide a break would be nice.

The frost bite in your toes doesn’t go away. You have to just learn to live with it. Stepping forward with numb feet is awkward. The pain in your chest from the icy winds of despair almost takes you out. You can’t see far in front of you, except from the light of your lamp strapped to your head. It’s just enough to get you by. The dexamethasone helps send the signal to your brain, it reminds you to breathe. You have never experienced the dizziness of this height before.

Descending is no longer an option. Besides which, the risks are just as high if you quit. And so you battle forward, unsure why you started out in the first place. Whose idea was this? It doesn’t matter who or how much you pay- there are no guarantees. The climb is daunting and formidable. It takes all your strength and still more. Just before the summit you enter the ‘death zone.’ So close, yet so far. Can you make it through?

I never really liked those documentaries. I prefer to leave the room, make a cup of tea. I nearly walked out of the cinema during ‘Vertical Limit’. I can’t bear to see pain in others, even in films. Yet here I am, suspended between life and death. Hanging by a rope, anchored to a cleft in the rock. If I could ease the weight I would do just as Annie’s father did. He cut the rope; he took his life to save hers. I would do anything to save her but in this instance it won’t make a difference.

Like attempting Everest there are two options for us too. Continue with chemotherapy for six more months with a bone marrow biopsy every three months for three years or a bone marrow transplant. The concern with this is the risk of relapse. If a patient relapses, and they find leukaemic cells in the marrow again they give you a 7 month window for treatment. If you aren’t in remission by then, you die.

An unrelated donor transplant is called a MUD. They do their best to match tissue type, reducing the risks of graft versus host disease. A little graft versus host is good. Too much is disaster. But there is also the risk of infection and those first hundred days after the transplant are vital.*

People say to me, “It’s so exciting she is in remission.” Yes, it is. If she were not in remission her Leukaemia would, most likely, have been fatal by now. Remission simply means we can continue. If they recommend a bone marrow, or stem cell transplant it means she will continue with chemotherapy until the donor is certified and still available. While they wait for the medical team to fly overseas for the stem cells, Sam will undergo radiotherapy and chemotherapy to make sure there are no Leukaemic cells left. She will be admitted to St Vincent’s Hospital for about a month, more if necessary. When she returns home we need to keep her isolated from any kind of sickness, or bacteria. This will have its challenges with 2 teenagers in our small house. Instead of going to RNSH for blood tests and transplants, we will travel to St Vincent’s every second day.

I feel I have reached my limit of human endurance. The strength of my will is at its capacity. Through it all, I hold on, living by the dim light of the word of God which is “a lamp to my feet and a light to my path.” Psalm 119:105

We can’t do this on our own. It is necessary for us to gather a team. I need people who will pray and will believe. Two are better than one, because they have a good [more satisfying] reward for their labour;

Ecclesiastes 4:9-12 says: “For if they fall, the one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! Again, if two lie down together, then they have warmth; but how can one be warm alone? And though a man might prevail against him who is alone, two will withstand him. A threefold cord is not quickly broken.”

And so, I am grateful for community and family; holding on to Father, Son and Holy Spirit. The three strand cord that does not break. We will reach our summit. When we do, we will know “that light, momentary affliction (this slight distress of the passing hour) is ever more and more abundantly preparing and producing and achieving for us an everlasting weight of glory [beyond all measure, excessively surpassing all comparisons and all calculations, a vast and transcendent glory and blessedness never to cease!]” 2 Corinthians 4:17

I hang on to this hope, ready to place my flag firmly into the ground knowing also that we “have overcome (conquered) by means of the blood of the Lamb and by the utterance of their testimony.” Caught up in this mountain, I am so aware of those who went before us. The great apostles of faith in that great cloud of witnesses who cheer us on, reminding us of what Christ has already done on our behalf, for us to be healed and restored.

* During the first 100 days after transplant they expect her to be neutropenic and have no ability at all to fight infection. They expect mucousitis, a painful reaction in the mouth causing ulcers and swelling which is almost unbearable. Some patients experience burning in their feet and hands, a rash on their shoulders, abdominal pain, cramps and diahorrea. In chronic cases the patient will have dry eyes, mouth and skin as well. During this time, it is important that she has no contact with anyone who is sick. They expect she will be tired, extremely tired. So the normal running of a household will irritate her and cause her anxiety.

http://www.leukaemia.org.au/web/aboutdiseases/transplants_allo.php

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Hold onto your crown

Crown picture

My girls have twirled in tutus to Tchaikovsky since they were young enough to toddle. And ever since they have been able to sit still, I have filled their heads with visions and stories of all things pertaining to girlhood. Last July, Sam ‘title paged’ her new journal with these words. ‘Hold onto what you have . So no one can take away your crown.’  Revelation 3:11

Every now and then we share excerpts from our journals, my girls and I. These are amongst my most treasured times together, pondering the past and dreaming for the future.

I love Sam’s creative streak, how she always finds just the right picture to paint a thousand words. She is the quieter one of my daughters, my melancholy and meditative one. She is also extremely strong and bold. Her journal is a collection of pictures from magazines and sketches of her own. They also contain scriptures, quotes and thoughts; always brief and to the point.

Emma’s journals are full of words, lines from films, lists of things to accomplish, deep revelations from scripture and lyrics from songs. I love to read the journals from her 7 months stay in the North of France when all she wanted to do was come home. She is passionate and determined about the goals she has for her life but her laid back nature also has the quirky capacity to make me laugh.

On the way to hospital today we squeezed in a visit to “Fleur Wood.” We love this shop; it embodies the feminine spirit and makes the kitsch collections of my childhood seem cool. Standing outside the change room while Sam tried on dresses for Amy’s wedding I find myself wishing I still had those pastel colored ballet prints from my childhood room. I am taking in my surroundings, reveling in my reverie when suddenly I remember Sam. Folding back the heavy chintz floral curtain I see my girl looking back at herself in the old timber framed mirror. She is sad and tears have left their stain on the silky ruffled folds of the dress. “I don’t know what I like anymore. I am tired of tights and t-shirts, flat shoes and no hair!” She runs her fingers through her wig, adjusting it from the nape of her neck trying to position it perfectly. To make matters worse, the Hickman’s catheter can be seen through the soft fabric and I feel her pain. I have no words.

Not once in the last 6 months has she complained about the way she looks. “Don’t let anyone steal your crown,” I think but I do not say. How can I tell her how to feel? Every morning since her diagnosis, she has been the perfect example of a woman who knows who she is. She has coped with me covering her catheter in glad wrap for her shower, and doing her daily dressing. She has felt exposed and humiliated time and again but still she gets up to fight another day. She has carried this diagnosis with such dignity. She is clothed in white, splendid in her purity, strongly trusting that things will all work out.

I imagine the pictures on the wall alive with activity and Samantha being Odette from the Ballet, Swan Lake. It is as if some evil sorcerer has placed a spell on her and she is transformed also for a season. Yet when Prince Siegfried comes to the lake at dusk he sees who she really is. She is the swan who is wearing her crown. She is the queen of the lake. His undying love for her will transform all the other swans and bring about their deliverance from the evil spell. In the story both Siegfried and Odette die in the lake, their spirits transcend to the heavens. Through their death the swans on the lake are transformed from their spell, set free to be human again.

When Jesus went to the cross, he died once for all. He paid the price that we deserved to pay so that everyone could have eternal life, if only they would trust in and believe on the power of His name. His coming was prophesied in Isaiah 53: 2 -5

He grew up before him like a tender shoot, and like a root out of dry ground.
He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him.

He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not.

Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted.

But he was pierced for our transgressions, he was crushed for our iniquities;
the punishment that brought us peace was upon him, and by his wounds we are healed.”

In Matthew 8:14-17, we see Jesus doing what it was prophesied He would do. By the word of God he drove out demons, restored the sick to health.

The same power that raised Jesus from the dead lives in me. (Romans 8:11) I know that the life I have found in God is not just for eternal life but for life, healing, prosperity and wholeness on earth as well.

Tomorrow we are going to St Vincent’s Hospital. It is right near where my girls once took their ballet exams at the RAD. We are going to discuss the alternatives for Sam’s treatment; whether to continue with chemotherapy or to have an un-related bone marrow transplant. Neither of these paths are easy. I feel like Jesus most have felt that night in the garden of Gethsemane.
Saying, Father, if You are willing, remove this cup from Me; yet not My will, but [always] Yours be done. Luke 22:42

No parent wants to see their child go through what my daughter is going through now. She is young, beautiful and at the prime of her life. Yet life happens. To some of us it is very difficult. Our dreams feel fragmented but just for a moment. My Father in Heaven knows how I love a romantic fairytale. Just for me, he saddles the white horse. He takes his bow. He rides valiantly across my life. He captured the heart of my daughter when she was only 16. She dies not in the lake but her sacrifice is enormous. The price she pays now will bring hope to many. She will overcome and to him or her who overcomes they shall receive a crown of life.

“I looked, and saw there a white horse whose rider carried a bow. And a crown was given him, and he rode forth conquering and to conquer.” Revelation 6:2

These truths in my life are better than the drama of any ballet, or any fairytale. They are not just recorded for me. They are recorded for all who will believe, adhere to trust in, rely on Him.

Heaven records the chronicles of Samantha. Her life is on the altar. God always provides another sacrifice. As he did for Abraham, so He will do for me.

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Dry Bones

Ezekiel 37:1

The hand of the LORD was upon me, and he brought me out by the Spirit of the Lord and set me in the middle of a valley; it was full of bones. He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. He asked me, “Son of man, can these bones live?” I said, “O Sovereign Lord, you alone know.”

Every day we are bombarded with information regarding the activity within Sam’s bone marrow and the doctors are grappling with the evidence to help us decide the best way to treat the condition to prolong my daughter’s life. They are kind to us, wanting to lead us to the best decision but, “It’s a Catch 22,” they say, “and there is no 100% right answer or cure that will guarantee her a long life.” I hear the words but am not completely able to absorb them.

Here, standing in the middle of this valley of decisions for the future of my daughter, my response to the question is just like Ezekiel’s response, “O Sovereign Lord, you alone know.”

I know that my Redeemer lives. He is the answer to this. Right from the beginning Reid, Sam and I decided that we would do all that we could do medically to see her healed. As the months roll by, as the side effects of treatment look us mockingly in the face, it takes everything within us to stand firm. Sheer exhaustion zaps the courage from me but I can not back down or allow fear to overtake me.

Psalm 27:8 You have said, “Seek My face [inquire for and require My presence as your vital need]”. My heart says to You, “Your face (Your presence), Lord, will I seek, inquire for, and require [of necessity and on the authority of Your Word].”

For the first time in my life, God’s word really is of vital necessity to me. We have been through many battles: broken bones, lost houses, closed businesses, financial burden, retrenchment and cancer but nothing that has touched us quite like this. Some days I am thankful for the steel I have in my back, put there from the pressures of past pain but there are also days when I, for a moment, think it is so unfair.

I get disappointed, discouraged and my strength fails me. Yet even then, God sends a word in season to encourage me. He reminds me that because I have set the Lord always before me, because he is at my right hand, I ‘need’ not be shaken. (Psalm 16:8) His words and their authority have become my vital necessity. Without them, fear drags me into the darkest of pits. I am reminded constantly of the manna in the wilderness, just enough for each day. But just like the Israelites, I want more. I want to escape this journey. I want the days to go faster, the recovery to be quicker, the results to be miraculous. To me, miraculous is fast. I want to enter the Promised Land today and be done with all this. And again He reminds me, “His ways are higher than my ways,” that even though I am immensely frustrated, my life, Sam’s life, our lives are in His hands. Sam stays inside due to risk of infection; she is unable to escape her isolation. It affects us all. Our house, once loud and full of activity has become a quiet refuge instead. We wish it were not so.

Deuteronomy 8:3  And He humbled you and allowed you to hunger and fed you with manna, which you did not know nor did your fathers know, that He might make you recognize and personally know that man does not live by bread only, but man lives by every word that proceeds out of the mouth of the Lord.

God allows us to go through things. He allows us to be hungry and humbled. He has a plan for us to engage with His character, to see His mighty acts and experience His mighty deeds. Our flesh hates to be challenged in this way. We long for comfort, security and blessing. We like to snack on His word at our leisure to take the pieces that please us and leave the things that don’t. He provides for us miraculously, giving us exactly what we need for that day but we want to see into the future, we want to know that everything will be okay.

Trusting God is uncomfortable. We like to plan and establish paths for ourselves. Yet to fully surrender requires that the bread of His word today be sufficient. When we lay our lives before Him, we will be like the Israelites in the wilderness whose “clothing did not become old upon you nor did their feet swell those forty years.” Deuteronomy 8:4

The enemy is obvious but so strategic. He moves us to fear, relying on the physical tiredness of our bodies, seeking to catch us out. Why do the headaches always come close to 10 pm, why is Emergency always full in the middle of the night, why do anaphylactic reactions appear on the last day of chemo? Why? Because we are tired and our defenses are down. There is a valley of dry bones. There are a multitude of people in the valley of decision, just like me. Some seek after healing, some for relationships to be restored, some for financial solutions but more than that; there are people who wonder who God is and whether eternity is real.

Ezekiel 37:2  Then he said to me, “Prophesy to these bones and say to them, ‘Dry bones, hear the word of the Lord! This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the Lord.’

Part of me relying on God for Sam’s healing is my partnering with Him. The word He sends me isn’t just to fuel and to feed me, it is also a powerful weapon against the enemy. I look and am overwhelmed, often tired, often discouraged but I rise up. I speak using the words He has given me since I have nothing left of myself to give. As I speak I see the symptoms subside. I step, one foot at a time, moment by moment I live. She will be healed. God will give wisdom to the doctors; he will provide miracles in her body. An army will gather, united as one.

I hold onto His rich and precious promises. As it was for the Israelites, so it will be for us.

Deuteronomy 8: 7-10 For the Lord your God is bringing you into a good land, a land of brooks of water, of fountains and springs, flowing forth in valleys and hills;

A land of wheat and barley, and vines and fig trees and pomegranates, a land of olive trees and honey;

A land in which you shall eat food without shortage and lack nothing in it; a land whose stones are iron and out of whose hills you can dig copper.

When you have eaten and are full, then you shall bless the Lord your God for all the good land which He has given you.

To stay up to date with Daily Prayer needs for Sam please visit http://samfroggatt.blogspot.com or click Prayers for Sam in Blog roll.

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Swinging Upside Down

upside down on a swing

This is me, aged 6, in my backyard in Henry Lawson Drive. My mum would prefer we called it a garden not a backyard but it wasn’t a garden. A garden is a place of flowers like holly hocks, delphinium and sweet peas, or at least daisies. I think my mum grieved for England in those early days and that our suburban home in East Hills was a kind of wilderness experience for her. Sometimes we don’t want to leave the Egypt that we know for the Promised Land, but that is another story, for another time and another blog.

Our backyard at Henry Lawson Drive was exactly that. A yard. A massive expanse behind the house with buffalo turf and gum trees. It had all the icons of the 70s including an above ground Clarks Rubber Pool, a climbing frame/cubby house, a ‘Hills Hoist’ clothes line, an outdoor ‘loo’ and my all time favourite swing set. This was my paradise. I played for hours with my ‘Sindy’ doll and ‘Patch’, my ‘Teary Deary’ and my bear ‘Pooh.’ That backyard was my haven, my escape into fantasy land.

My Dad was an Anglican minister and story has it, we moved to Australia because they couldn’t afford to heat the house on his salary. At least that is my understanding of how things were back in the 70s when we first moved out from England. So here I am upside down on a swing surrounded by all my favourite toys.

I don’t really know what made me think of this photo when I got up this morning except the fact that right now, I feel like my life is completely upside down. As I hang from my knees suspended in space I hold onto my beloved daughter just like I held onto ‘Pooh Bear’ 37 years ago. My other children are not completely out of sight but they do not have my full attention. I leave them to swing tandem style; somewhere alongside me. (Sorry Jack, you are not a Sindy doll, more like Action Jackson – fighting battles of your own!)

I did not choose this journey any more than I chose to travel from England to Australia. No, that decision was in the hands of my father just as my life situation right now is also in the hands of my Father.

As I hang here I can feel all the blood rushing to my head and I try to get some new perspective on all that this is about. It’s hard to fathom why I am in this position. Any moment now I could go full somersault and land on the ground in a heap but there is too much at state. I simply must get back up and on the swing that shifts back and forth on its pendulum. I’m hanging on for dear life, quite literally.

I close my eyes. It helps me remember why exactly did I love that upside down feeling of complete lack of control? In my memory I am that 6 year old again. I look up. This is where my help comes from.

Psalm 121

I lift up my eyes to the hills— where does my help come from?

My help comes from the LORD, the Maker of heaven and earth.

He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.

The Lord watches over you— the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm— he will watch over your life; the Lord will watch over your coming and going both now and forevermore.

Being in the blood cancer ward at RNSH is like being in a convalescent home. There is no joy, only sadness and sorrow. All the patients are in pyjamas except for Sam. She rises everyday to dress as if an outing is in store. If she has the energy and the permission we escape at every chance, the way she feels determines how far we go.

The closest outing is to the ‘waiting room’ which we renamed the ‘sun room’ at the end of the corridor. Yvonne asks “Where will you be?” and I say “The sun room” and she says “Where the heck is that?” rolling her eyes, impressed with my ability to attribute such a nice phrase to such a horrible place. I move the couches to suit our needs. Close to the TV for The Morning Show and an opportunity to see Jamie Malcolm or opposite each other to play a game of cards, or scrabble, or scattergories.

Sometimes we escape on sunny days to the “Fresh” café on level 2, just near emergency. It has an outside ‘courtyard.’ We wear our coats and rug up in scarves since the winter sun rarely makes its path to this concrete square in the middle of the hospital grounds. Some days the drip stand is too heavy to push (like on day 3 of chemo) when three imeds are screwed onto the pole and fluids, mesna, and chemo travel through tubes into Sam’s Hickmans catheter leading directly to her heart, so we settle for the café on level 3. In the early days after diagnosis we were advised to avoid this area due to the risk of infection. But now we live life on the edge, weighing up the risks of the café with the risks of the ward and decide coffee and sanity are worth the chance we are taking.

By Monday Sam is going insane. The noises, the smells, the tastes, the harsh light of the fluorescent tubes and the lack of fresh air are taking their toil on her thoughts. “Mum, I’m so depressed. I have to get out of here.” I leave the room with an idea and run straight into Yvonne. “I have to get her out of here, she’s’ going insane.” This woman is my Mother Superior and I am Maria. She seems to understand our need to escape.

“… How do you make her stay? And listen to all you say how do you keep a wave upon the sand? … How do you hold a moon beam in your hand?”

She summons a nurse, “Disconnect this IV drip and give her the mesna in oral tablets.” Then to Sam, “Go out and enjoy the sunshine.” Disconnected Sam makes her way down the corridors in ‘pose turns.’ Her ballet teacher would be proud. “I’m free, I’m free,” she says on every rotation. The thought of freedom energizers her as we enter the lift and take it the main entrance. Then we walk slowly, arm in arm all the way to St Leonard’s Station. We already know what to order for lunch. The same thing we ordered last Wednesday evening; Brushetta and Gourmet Pizza. I even order a glass of white wine. I am so proud of us until I see the look on her face. “Mum, I’m exhausted,” she says, “I think I am going to faint.” She looks as if she’ll do exactly that and I wonder if I am mad bringing her this far from the hospital to try to help her feel normal. Somehow we make it through lunch and wander back slowly to hospital. “You were very brave, mum, to do that.” Sam says, “thank you, it was nice.”

I return to hospital to find this brief email from Bronte. It says http:// 1000awesomethings.com #748- That feeling in your stomach when you go really high on the swings

It perfectly describes our escape. That feeling is so fabulous because of the risk involved, the wind in your hair and the sun on your cheeks. But I’m glad to be back with the specialists, nurses and to see her lying safely asleep on her bed tired from the journey up the street.

Sometimes the risks of this protocol don’t feel safe at all. Twice over the weekend I kissed her goodnight and prepared to leave after the injection of new chemotherapy into her line. Within minutes she was rocking back and forth, curled in a ball holding her head, crying in pain. I call the nurse who comes running. Sam never ‘cries wolf’, so when she presses her buzzer they come. They call the doctor who in turn calls the ‘on call’ haemotologist. The care here is outstanding but I decide to stay until the headache passes. I am incapable of solving the problem, I am tired, it is late but I stay. I want to leave when she is calm. The doctor advises me to leave, promising that if they need to do a CT scan in the night they will call me. He says that the haemotologist thinks it’s a post lumbar puncture headache and is to be expected. “What else could it be?” I ask. “Well it could be a brain haemorrage,” he says, “but we’ve checked her platelets from today’s blood and we don’t think it is that.”

I swallow hard. The tablets they have given her have relaxed her enough to get her to doze. Feeling helpless, I make my way to my car. I pray, reminding God or more likely myself who He is. “You are my strength and my song. You are a very present help in time of need. You are my strong tower, my deliverer. I put my trust in you. I will not be ashamed. You are faithful and true.” As I exalt the name of the Lord, I relinquish all control. Our lives are in His hands. His ways are higher than my ways. I am reminded that the “battle is won by lifting Jesus higher in the midst of thee,” and the old song to the scripture becomes my theme as I drive home. “The battle is won, by lifting Jesus higher in the midst of thee, joy, joy, joyous victory.” By the time I get home its nearly midnight. The whole house sleeps.

Reid is still half awake and I tell him I need to read and he tolerates the night light as I snuggle with my Bible and an old journal. I refresh myself with words in Deuteronomy. I am so aware that I need “strength for the journey,” that I will need to arise at 6 am and make my way back to the hospital. My goal is always to miss the school zones; otherwise the trip takes twice as long. Satiated by God’s word I fall into a heavy sleep, deep in my mattress.

When I arise I discover that my hands have made their way up the chains and I am re-positioned now, high on the trapeze. I have a new outlook, a new word for the day; surely His mercies ARE new every morning. “Fixing my eyes on Jesus, the author and perfecter of my faith,” I make my way back to 12 D. Later that day I discover why it was so vital to spend that time at midnight in Deuteronomy. But for that the moment I am happy to enjoy the gentle motion of the little swing.

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