Monthly Archives: April 2010

Courage

Sam had her hair coloured and styled. It’s very short. She put a sparkly headband in it and wore it that way when she drove to school to meet me for the drive to the city for afternoon appointments.

She is beautiful but she is also brave. It takes courage to hold your head up high when cancer has stripped you of everything. Courage is the only thing that puts you back together. It’s the only thing that strengthens your spirit, that lifts your gaze, that causes you to smile.

Courage is different to faith and hope. It’s a quality that you decide to have. There’s a switch inside you that turns it on. It’s deep in your core and when it’s on, it steadys you.

It acknowledges that this situation is unfair, unexplained, undeserved but you rise anyway. Your mind glimpses a possibility of a future. Courage walks, not in the absence of fear but it walks anyway. It speaks to you in whispers, it tells you, ‘You’re going to get through.’

Courage sees triumph in the presence of giants. Though intimidated, like everyone else, it chooses a different stance. Courage is David with his stones and his sling. It operates in what it knows and disregards what it does not. Courage hears heavens voice that says, “I prepared you for this, do what you know, I am by your side.” Courage acts. It can take Goliath.

Courage has no arrogance. Like love, it doesn’t brag. It simply acts on what it knows and trusts that what it knows will be enough. Courage hears the whispers of the people but continues to walk through the crowd. Courage knows that the battle is great, that all could be lost, that things could get worse but focuses on the goal anyway.

Courage returns with a pole filled with clusters of grapes, with figs and pomegranates but it is not ignorant. It has seen the strong fortified cities; it has seen the enemies that dwell in the land.  Courage sees an inheritance where others see defeat. It says, “Let us go up at once and possess it; we are well able to conquer it.” Doubt viewed the same land and responded “We were in our own sight as grasshoppers and so we were in their sight.”

Sometimes it seems there will always be another battle but God has given us hope. We take courage on the journey. Tomorrow we go, yet again to spy out the land. We go to the professor to get an explanation of bone scans, thyroid tests, blood tests and fertility tests. There is still so much territory to explore. It is in God’s hands. “If the Lord delights in us then He will bring us into the land and give it to us, a land flowing with milk and honey…The Lord is with us.”

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Focus

“Our greatest weapon against stress is our ability to choose one thought over another.” William James (1842 – 1910)

My parents raised me to look at the bright side. Not only did they call me ‘bright and shining’ they raised me to believe that life was full of light.

I grew up in church houses because my father was an Anglican minister. Church of England they say in England, Episcopalian if you live in the United States. Regardless of the denomination or the title religion chose to label the church with, my experience of ministry was that of frequently moving from one rambling house on a main road, next door to a church to the next. One was opposite a nightclub, all were on major roads, and none were on the leafy side of town.

The houses we grew up in were referred to as The Rectory and my father used to jest that my younger brother James was the ‘wrecker of the Rectory’. If you asked me, these houses were already wrecked. Everything was broken, poor quality and covered in layers of dust. Mum would do all that she could to transform these places into a home, spending her days up ladders wallpapering the rooms, sewing cushions, bedcovers and curtains but just when it felt like things were in order it would be time to move on, to start again in another house, in another suburb, in another church.

Life arrives in segments of time. We are looking through the rooms knowing it’s where we’ll be for a while. It’s not always what we want but we think to ourselves we can make it work. We’ve got what it takes and instead of letting it get us down, we see the possibilities. We ‘batten down the hatches” and weather the storm.

Living through Leukaemia was like that last year.  The CNC told us, “It can take two years to be cured but a lot depends on the first 90 days. The goal is to get her in remission and then we will have some indication.”

We were going to be one of the lucky ones. We were positive that remission would be reached, that the journey would be over, that one term off work for me would be ample and 6 months off uni for Sam. Segments of time can be useful; one step at a time is manageable, you move into the space in your mind, you make adjustments, you get on with your life. At least that’s what you attempt to do.

John Milton writes, “the mind is its own place and in itself it can make a heav’n of hell or a hell of heav’n.” I am grateful to my parents who raised me to do the former.

If you ever met my mother you would think she had a privileged life. From my earliest memory right through to the present she is the most beautiful and well-groomed woman I have ever met. Yet her life has never been easy, raised as a coal miner’s daughter in the north of England her life was hard. Then as a young bride she discovered there were complications with my father’s health and so they have battled his disability all of their life. That is their story not mine to tell but from observing their lives for 44 years I have discovered some wonderful keys, the best of all being the ability to pay attention to the present.

In the epic poem Beowulf it is written,  “Every life has more than enough sadness and more than enough joy.” It is up to us to choose which to focus on. My mum always focused on the joy. She was always delighted by the opportunity to give sandwiches to the drug addicts who knocked on our door for cash. Over dinner she would entertain us with her stories of their dialogue. Sometimes they would say they needed money for food. “Then I’ll make you a sandwich,” she’d say or others would ask for money for the train and she would respond, “Then I’ll take you to buy your ticket.” There was no spare cash lying around our house but that didn’t stop them from coming back in the night to see. We were broken into on numerous occasions and calling the police almost became routine.

Still my mother would be grateful. Grateful that we hadn’t been home at the time, grateful she’d been wearing her gold necklace, grateful that the police fingerprint tests said they had probably just been teenagers looking for some quick cash and been frightened away by our returning. Most of all she was grateful that parish council might now decide to close in the front porch and make it a room.

On the day that Sam was diagnosed with Leukaemia I phoned my mum to tell her the doctor’s words. At the end of the line I could hear her swallowing her tears,

“Darling, I thought so but we will get through.” My mum is a nurse and from the pieces of information I had sent throughout the day she had worked it out and prepared her response. She was positive but full of compassion.

The ability to pay attention is an art I learned from my mum who always focused on the beauty around her no matter how hard things became. If ‘God is in the details’ then so is my mum and with His help she furnished the rooms of my life like she did with those rectories, until the cracks in the plaster could hardly be seen. The beauty all around us doesn’t take away the broken pieces but focusing on the good things prevents us from falling apart.

There are many reasons to crumble as we wait for Sam to fully recover from her transplant. On Friday afternoon she mentioned that the little bruises on the top of her legs had now travelled around the back and up her lower abdomen. Inspecting her skin I felt fear rise in my cheeks like hot flushes. “I think you’ll be fine.” I said and then, when she went out for dinner with her boyfriend I searched the web for answers.

We are caught; it seems between hope and fear but in the end, hope wins out. Sometimes fear parades as powerful, pounding in my heart, narrowing my view until God reminds me that perspective is found in the big picture. I took myself along to our connect group, even though I do not want to go, as the leader I sensed that it was right that I did. On arriving I shared the situation and my girlfriends encouraged me. We had a great discussion about last week’s sermon with our husbands, we laughed and we prayed for each other but mostly they prayed for me. I was grateful, like my mother and I considered the beauty of the evening, the comfort of conversation, the power of prayer and returned home filled with joy.

I don’t know what the bruises are from or why they are there but “The Lord is continually at my right hand therefore I will not fear.” Psalm 16:8

Winifred Gallagher writes “if you could just stay focused on the right things, your life would stop feeling like a reaction to stuff that happens to you and become something you create, not a series of accidents but a work of art.” That is the kind of beauty I aspire to. No matter what comes our way it is our decision to respond, to not react; to see the potential for miracles not the cause for defeat, to continue to live out in the open allowing our lungs to enlarge and to breathe.

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Cave

It may not be possible to imagine the power of a simple act of kindness to completely change the colour of your day. It may not be possible until you have lived, ‘up, close and personal’ with a life threatening illness. Just as one learns to live in the moment, one day at a time, breathing in scents, tasting flavours, tuned in to every God given pleasure so you are empowered by every word aptly spoken or a kind deed done. In the last 15 months I have been the recipient of such words and kindnesses time and again. These kindnesses, after making me feel humbled, apologetic and embarrassed shift me to humility, thankfulness and the awareness that I cannot be brave alone.

Sickness can be isolating. People wish it were over, that you could just get on with it and stop crying out for help. You understand that you are slowing things down for them. You remember the pace at which you used to live, so busy racing to the next thing that you barely have time to stop to say ‘how are you?’ You don’t really want to know the answer. They are sick, uncomfortable, needy, no fun. It’s hard to stand by someone who has been sick for so long you hardly remember what it was like when they were well.

As time goes on you realise more and more how much you value those simple acts of kindness and marvel at the people who still walk close by your side. Like a girlfriend who drops by with dinner and a colleague who spends her time preparing extra resources so that it’s easier for you to teach. I am living at the mercy of friends who do all that they can to lighten my load and I am constantly amazed by their acts of kindness.

I am moved to tears by the kind deeds of strangers as well. Those people who just used to be people you passed or who cut your hair, or who made you coffee as you rushed to work. Somehow they aren’t just acquaintances now, they are friends who travel with you on the journey to the greatest miracle you could ever ask for, in my case it’s the healing of my daughter and it seems that everyone I meet wants to cushion the carriage so I can handle the bumps of the road. It’s the girls at the gym who offer Emma a year’s worth of free work outs, it’s the champagne that they chill for me when I arrive at the hair salon, it’s the piping hot coffee with my name and a heart drawn on the paper cup and the question as it’s handed over that asks ‘How is Sam today?’ “It’s the guys at the pharmacy that sit down to talk though the line is long with customers needing advice.

Everywhere we go God has surrounded us with strangers who have become our friends.

I popped into The Bunker for coffee today because that’s what we do when we go to St Vincent’s. It’s our treat and even if we’ve had a coffee already at Mona Vale we get one at ‘Bunker’s as well. Bunker’s has become a kind of a haven over the last 8 months since we first arrived for ‘conditioning therapy’ to prepare Sam for the bone marrow transplant. I hated that week of therapy more than almost any week in my whole, entire life. ‘Conditioning Therapy’ sounds like you are going to a Day Spa, a pamper zone, that something lovely is going to happen. The truth is that they make you lie in a perspex, coffin shaped box, pack you down with rice, then leaving you alone in the room they use a linear accelerator to direct radiation to every cancer cell in your body thus preparing you to take on your donor’s immune system after the stem cell transplant.

It was quite by accident that we found The Bunker on Liverpool Street. Sam and I had taken a walk after her admission to check out the lie of the land. Darlinghurst was to be our home for the next month of treatment and we wanted to familiarize ourselves with the area in case she should be well enough to be granted gate leave in the near future. We discovered a corner junk store, a great burger joint, a couple of lovely boutiques, a French restaurant and best of all we found The Bunker that serves Campos coffee and the type of homemade comfort food that I grew up on.

“Hey, Clare,” Scott said this morning as I walked in to order our flat whites. “How’s Sam doing?’ “Okay, “ I said, “it’s complicated, surgery for in grown toenails this week but she’ll be okay, one day at a time.”

As we chatted I thought about the way, this little hole in the wall café has become a haven on our journey. It is where I sat when Sam had TBI, where I went on September 11, when they told me she might die, it is where I went to clear my head when my mum arrived for her shift of caring and where we continue to go every time we have hospital appointment stills. Wikipedia says,  “A military bunker is a hardened shelter, often buried partly or fully underground, and designed to protect the inhabitants from falling bombs or other attacks.

I have sought out havens from the intensity of the bombs that land in the form of the doctor’s words, the blood test results and the evidence of infection. There have been days were I sought the solitude of the juniper tree, much like Elijah and I have wished that the Lord might take my life. Instead of death He has fed me with cake baked on coals, He has watered me and given me rest.

Even Elijah needed a cave to hide in when he was intimidated after the battle, imagining he was the only one left. But the truth is you are not the only one. Everyone is going through something. Someone needs your story. Don’t stay in the cave too long. Get up when you’ve wallowed a little; get out of the sad, dark place. Be satiated by coffee, chocolate and God’s word. It will be enough to sustain you. The cave is not where you belong though it feels safe to stay there a while.

1 Kings 19: 9 “There he came to a cave and lodged in it and the word of the Lord came to him, and He said to him, “What are you doing here, Elijah?’

God knew from the outset that some days you would want to retreat, die under a tree, hide in a cave, host a pity party, plead your case. For the drama you love He sent the wind, earthquake, the fire, but He was in none of these things. They just reflected you and your concept of world changing. When He had your attention you made it all about you. You were the only one; you were the one hardly done by.

“And I, I only, am left; and they seek my life to take it away.” (! Kings 19:10)

He loved you anyway. He heard you cry. He scooped you up on His lap and he squeezed you and lovingly taunted you until he heard your laughter, until he made you see that it isn’t about you at all. He showed you how much He needed you, how you were part of the plan but not the whole plan. He caused you to come to the entrance of the cave and he asked you again “What are you doing here?”

At that point you surrendered your ambition and decided to return, to gather a team, to find a soul mate who also knew how to plough a field. He taught you to hold life loosely in the palm of your hands, making no demands on others but confident in your faith in Him.

Making your way out of the proverbial bunker he told you about a new army the type Cleveland Amory described when he said  “What this world needs is a new kind of army – the army of the kind.”

What does the army of the kind look like to you? What type of community could we build? What’s your story and how could God use it?

Can I suggest a great cave to ponder these questions at The Bunker, Liverpool St, Darlinghurst, enjoy the menu of sourdough toast and jam, toad in the hole, runny eggs with soldiers and a host of other things.

Say hello to Scott and Ian. Tell them Clare and Sam sent you.

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Road

Even in the most difficult circumstances, life has strong moments that make you look up to feel the warmth of the sun. It’s tempting to curl up in a ball, to turn off the lights, to stay indoors and occasionally I do. Sometimes the news of set backs, no matter how small; feel magnified through the lens of the word ‘immunosuppressed.’

My mum called the other day to tell me that while my dad was praying for Sam he asked God to protect her while she was ‘immuno-depressed.’ He had muddled his words by mistake and of course my mother corrected him as all good wives correct their husbands but as I hung up the phone, I thought to myself, ‘Dad, prayed right.’

The fear of things that might happen as a result of Sam’s compromised immune system scream so loudly in my thoughts that I could easily become depressed. Yet by the grace of God, most days I discover that I am able to be tremendously happy. Like Martha Washington said, ‘the greater part of our happiness or misery depends on our disposition and not our circumstances.’

For as long as I can remember my school report card read two things, one being that I didn’t work to my potential and the other that I had a cheerful disposition. That was the constant of my school life so imagine how joyful I could be if I really put my mind to it! In my current circumstance I decide to be happy. Not just happy though, I am determined to find a way through this slippery path to a place where I find my feet on solid ground.

Life is a series of deep embankments along narrow paths. It’s the life I signed up for when I gave my life to Jesus. I was informed from the beginning that the road would be narrow.

Matthew 7:13-14 (Amplified Bible)

‘Enter through the narrow gate; for wide is the gate and spacious and broad is the way that leads away to destruction, and many are those who are entering through it. But the gate is narrow (contracted by pressure) and the way is straitened and compressed that leads away to life, and few are those who find it.’

Yet strangely, as believers we get a little surprised when things don’t quite work out the way we thought they would, we question God and his word. Some decide to abandon the path and enter through the wide door, seeking comfort and convenience. Others decide that Romans 8:23 is true and ‘are assured and know that [God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose.’

Today I decide to be one of the others.

Tomorrow, Sam will pack her bags and make her way to meet me at school. We will head into St Vincent’s Private Hospital and Sam, after a day of fasting will again change into hospital gowns to prepare for surgery as she has done so many times before during the last 15 months.

She will climb up onto the narrow stretcher with the starched white sheets and put her little blue paper hat that resembles a shower cap on her head. I already know that when I kiss her forehead I will push down the tears and swallow. I know I will whisper ‘I love you,’ as I squeeze her hand. I know I will wrap my arms across my chest and fold them tight against me as I walk away down a sterile hallway. I know I will pray and let the tears flow.

I know I will press my thumb on the button at the bottom of my phone to check the time, then on my twitter application to skim through people’s tweets, I’ll check my emails, my facebook pages and then off and on my thumb will go. It will be like I’m pulling the lever on a poker machine desperate for something that might grasp my attention and distract me through the 3 hour wait until I see them wheel her out all groggy to her bed on the ward.

I will try to read but my thoughts will drift off the page and hang in the air that smells like chlorohexidine. Then I’ll phone Emma and Jack. They will tell me they are fine and Reid will call to say he’ll be home as soon as he can. He will ask me to remind him what he should do for dinner and they will eat McDonalds instead.

Eventually I’ll kiss her again and when I am satisfied she is peaceful, I’ll brave my way to the car in the dark through the streets of Darlinghurst. I will think of Gara, my friend, who goes to Darlinghurst on purpose to help the addicts that I will probably walk past. I will ponder life and passions and purpose. I will try to make sense of it all.

I will wonder why my perfectly normal life was interrupted by sickness as I drive through city streets late into the night, silently congratulating myself on how clever I am to know a few different routes home now. Something I didn’t know 6 months ago. I will talk to myself about my magnificent future, the one that isn’t what it used to be but the one that God always knew I would live.

At the traffic lights I’ll click my ipod. I will find the track that I love to drive home to by Hillsong United, ‘Fire Fall Down,’ and I will sing the words that resonant deep in my spirit. I will worship God completely because although this road is so incredibly hard I am grateful that I am still on this road. I am grateful that my daughter is alive, I am grateful that someone had enough compassion for us, even though they didn’t know us that they donated their stem cells to preserve her life. I am grateful that God loved me so much that He sent His son to shed His blood for us, that no matter what I did, through Him I have eternal life. Even though the way is narrow, I am one of the few who found the way.

As I pull up the car out the front of our home I will be thankful for my father’s prayers, my teachers reports and for empowering worship. I will not be immuno-depressed but rather my disposition (the predominant or prevailing tendency of one’s spirits; natural mental and emotional outlook or mood; characteristic attitude) will be cheerful.

And just out of interest, assuming that you are? My name Clare means ‘bright, shining and illustrious,’ my middle name Felicity, means ‘happy.’ So my parents already spoke it over me at my birth. Samantha, by the way, is a derivative of Samuel meaning ‘one who listened to God’ and Kate her middle name means ‘pure.’ I am confident that even in my absence she will hear His voice and He will keep Her safe.

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Dandelion

Sometimes it feels like you
Are left holding the stem of the dandelion.
You are alone in a field
With a green stalk in your hand

There were questions,
Simple, yet significant but
They are answered now
At least for the moment

Every seed is airborne,
Lifted by the wind
That the word of
Your encouragement provided.

You watch the little parachutes drift away
You watch as sleep comes
You see the regular rise and fall of her chest
You see the tear stained trail on her cheek

You sigh, turning off the light.
Making your way back to your own bed
To the silence of your room
You stare at the ceiling

You wonder if it will ever be over
Whether laughter will come again
If your strength may ever be restored
And though you are immensely tired

You do not sleep.
You listen to the wild life in the garden
The possum on the roof
The hum of the fridge

You imagine the possibilities
Like every seed floating on the wind
Lands on new soil
Fresh and fertile

You pray that this terrible journey
Provides hope to someone else
That your experience paves a way
To bring new life

You ponder all that you know
Which you did not know previously
And you see that word spreads
And is multiplied like dandelions

Even in this moment
Feeling entirely helpless
Afraid and alone
You see a field in the distance

It is full of life and hope
Pretty flowers dancing in the breeze
Waiting to be picked, waiting for human breath
To blow and count the time

1 o’clock it’s Leukaemia
2 o’clock we need a donor
3 o’clock no sibling match
4 o’clock still waiting

And you wonder if your voice
Might be heard if you wrote well
If you created awareness
If you showed people how, where and when

You see a registry in Australia
With our unique blend of cultures
The Greeks, the Indians, the Lebanese
Who married Australians, all donating stem cells

Seeking to be a match, to save someone’s life
Someone not as lucky as your daughter
Who found a match though the wait was long
You fall asleep, you dream about miracles

And in the morning, as you prepare the drugs
As you pray that today is a better day
Hope floats; it rises in your belly
And you thank God that He is able

Reflecting on our journey through diagnosis, through chemotherapy, through the many months of waiting for a bone marrow donor to match our daughter’s tissue type we are so grateful that in the end the registry found not one but two willing people to save our daughter’s life.

Many people would agree that Sam is far from ‘lucky.’ The road has been grueling, complicated; full of heartache and agony. The future is still uncertain but fortunately for us we have been given a chance. Sam has been given a chance.

A donor match was found in both Germany and America and the American donor was the best option for Sam. Her donor wrote that his wife’s best friend had Leukaemia and that prompted him to be tested. He was excited to offer his stem cells for our daughter to give her hope of new life.

The Australian registry needs more people (particularly healthy males between the age of 18 and 40) to join. I am inspired to be involved in creating awareness and providing people with information to know what is involved in becoming a bone marrow donor. One of the hardest things on this journey has been seeing people die from Leukaemia because there were no available donor matches.

For information on how to become a bone marrow donor see http://www.abmdr.org.au

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Keep Walking

Keep walking, though there’s no place to get to.
Don’t try to see through the distances. That’s not
for human beings.
Move within, but dont move the way fear makes
you move.
Today, like every other day, we wake empty and
frightened.
Don’t open the door to the study
and begin reading. Take down the musical
instrument.

Let the beauty we love be what we do.
There are hundreds of ways to kneel and kiss the
ground.

RUMI

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