Waiting Four Years for a Date

It has been four years since Sam had open heart surgery. Sam has a date for his catheter procedure-the 20th February, 2013.  It is taxing being the parents of a heart kid.  We live each day with gusto and get swept up into the normality of life for a while and then are pulled against our will back into the reality of having a child with a broken heart, one that is only half of what it should be. 
Don is getting involved at work, enjoying the job, building new relationships, learning new things.  I am doing mum things, writing, getting my Avon business off the ground and making new friends.  Jack is just beginning Grade 1 next year.  And Sam lives a happy busy little life with me for the moment, before he attends Kindy next year.  There are many minutes in the day when I feel 'normal' and then many when I don't. Like:

• when I have to carry Sam around town because it's hot and a long way to walk and his little heart can't take it.  Only to have someone tell me that I should make him walk and that it's good for little legs to have the exercise.
• when I have to fill out enrolment forms and list his medical history, medications etc.
• when I have to remind myself to let Sam eat anytime to add weight to his slight frame.  And then have people comment on how small he is for his age and ask me what he eats.
• when I have to give him medications at night that are equivalent to rat poison.

I don't want to plan for him to go and have the catheter, but I must. The catheter and surgery will both be at the Mater Hospital in Brisbane.  At this stage I think Sam and I will be travelling down alone for that one.  And then a week or two following he will have the Fontan procedure, open heart surgery, to complete the circulation in his heart.  We are hoping and praying that there is some way that Don and Jack will be able to travel down for that and stay for a few weeks.  At this stage we are pretty sure that the government will only pay for Sam and I to travel, but we will find out more about this later.  There is so much I could worry about such as Don's work, Jack's school, money, rent, bills, my business but I am striving with every ounce of strength that I have to give it all to God and leave it there.
It is like Paul says in the bible, I struggle so much with the flesh part of me wanting to rise up and try and control everything when I know I have no control at all.  God has shown me that the way is clear and that I just need to trust Him, but I must tell you that that is easier said than done. It is a battle to keep your head clear and your heart in the right place. And in between now and then I want to enjoy the trouble free time that we have, celebrating Christmas with family and enjoying a few weeks holiday together over the Christmas break.  Even as I write this my heart quivers within me.  Sam does not remember any of what happened in the first year of his life, but I do.  I remember it with stunning clarity.  But I also remember the strength of my God and all that he has done for us.  And so although I am yet to believe them fully I claim God's promises to us once again.

Sam will live and have life in abundance.  He will testify to the nations of his healing

Things never happen the same way twice dear one.  If you were any braver, you would be a lioness.

May God increase my faith and may He give us His strength on this path He has set before us. His promises are true, no matter how I feel.

The Lion's Promise

I woke up feeling defeated today.  Small things are getting to me,things that don't usually bother me-housework, people's attitudes, the heat.  All of it is simply surface stuff, not the root of the problem, but it all compounds how I feel.  I sometimes feel like when I have no control over one part of my life the rest crumbles as well. For the last few weeks I have felt abandoned by the God of miracles, like my prayers are bouncing off a glass ceiling, but I still keep praying anyway and they echo in the space around me; reverberating my head and heart. And so today I went to church and was hurt by what some said there because of my fragile heart.  Is it their fault?  No, they are not to blame for my state of heart. 

So as I wrestled with God this Sunday he showed me what was hiding in my heart, weakening my defenses and causing the light to dim within me. 

While watching Chronicles of Narnia, Prince Caspian, God spoke to me through these words. Lucy is speaking to Aslan in the movie and as she did it was my words she spoke.

Why wouldn't you show yourself? (Me: Why don't you show others your power and your love for us)

 
Why couldn't you come roaring in
and save us like last time?
(Me: You have saved Sam before why do you now stay your hand and make us endure more suffering?) 
Things never happen
the same way twice, dear one.
 
If I'd have come earlier, would everyone
who died... could I have stopped that?
(Me: What could I have done that would have stopped Sam having to have more surgery?)
 
We can never know
what would have happened, Lucy.
 
But what will happen
is another matter entirely.
 
- You mean you'll help?
- Of course.
 
- As will you.
- Oh, I wish I was braver.
 
If you were any braver,
you'd be a lioness.

I have been angry at God, because I know He has the ability, and the power to swoop in and save the day.  I HAVE SEEN HIM DO IT. 

And yet, today He speaks to me in this messy place I find myself, to tell me that 'things do not happen the same way twice', and in saying so He gives me hope.  The light within me though flickering, is growing in intesity.  For in His words there is a promise for the fight ahead of us.  I can tell you now that I don't feel like a lioness, and I wish I was braver.  But I know who fights for us, and I trust him no matter how furious I may be.  God will take my fury and use it for His glory and my good.  Because if I am angry it means I have not given up the fight.

If you are looking for the calm resolution in this post you will not find it.  My angry fighting heart remains, though God is taking it and re-moulding it for His purposes.

Sin is Something We Didn't Do

I did not grow up as a Christian. I think I knew God in my own way and I even talked to him at times, but I didn't follow Jesus.

Sin was something that was easy for me to understand. If we did something wrong it was sin. At least that is what I thought. So if I steered clear of all of the 'naughty' things, then I was a good person. For me life would be good and I would not have to worry about God, because all good people go to Heaven, right? That is how I lived, and I believe most people still do live each day.

I was saved by Jesus when I was 16 and was healed of ongoing illness at the same time.  But that is a story for another day.  Fast forward a few years later and I was married with kids.   I was a good person. I looked after my family. I earned my living. I gave to those who needed it. I was keen to help out. In the eyes of those around me, I must have looked alright. I must admit I was quite content to live my life in this way for a great many years, until my heart started to question some things.

You see I wasn't always good. In fact at times I was downright rude and disrespectful. I thought things about people that I knew I shouldn't. I said and did things that I knew were not right. I had given my life to Jesus years before and then taken it back again, essentially proclaiming that I could do it better. The way I was living spoke spades, ‘Thanks for the salvation, but I can take it from here!’ Somewhere along the line I had stopped believing that I needed Jesus, or perhaps that I knew enough of Him, and if I got any closer I would become one of those freaky religious people.  So it got me to thinking if God would allow me into Heaven being the basically 'good' person that I am, why would he send others to hell? Does he have a scale of one to ten that he uses to measure us on? "Hmmm she only stole some paper from the school supplies when she was 9 and called her Father a Son of a Bi#*h, thirteen times. She can still come in. But that fella over there he crashed into and killed a family of 5, send him into the darkness."

No way, that is not how God works and that is not how sin keeps us out of Heaven and separated from God, even now.

'The world's sin is that it refuses to believe in me. Righteousness is available because I go to the Father, and you will see me no more. Judgment will come because the ruler of this world has already been judged.' (John 16:9-11)

What keeps us separated from God and bound for a very unpleasant place for eternity is not something we have already done, but what we have not done!

Jesus spoke the words above just before he was killed on the cross. He was saying that if we will believe in Him, we would be forgiven by God. Righteousness simply means we can stand blameless, untainted, and clean in front of God. So not only do we get the unbelievable opportunity of a repaired relationship with God, but we also get to avoid his wrath. You see there has to be punishment for sin, because otherwise Heaven would not be Heaven. There would be no peace, no happiness, complete health and well-being in a place that contains sin.

I didn't get it for so many years. I thought you had to do everything just right to be a Christian. Because Christians are holier than thou, and live perfect lives, free of mistakes and live a life that is challenge free. I could not have been more wrong. And I am so glad I was wrong.

I don't know if you have thought about sin this way before, but it was really on my heart to share. If Jesus didn't die, then I would have. There would have been no way open to me to have a better life. Our life here is so short, and we are all given a choice in that time.

I am a good Mum. I love my husband. I like to help others. I think I am a good friend. I like to listen to and encourage people. Yet none of it saved me. Jesus did. Because one day I came to realise that there was more to life than what I saw with my eyes, and that I couldn’t live (in every sense of the word) without Him. I am so glad that I realised that when I did.

Just Your Average 4 Year Old Conversation (Not)

This afternoon Sam and I had to have a conversation that I hadn't planned on having until well after Christmas.  However when you are talking to doctors, family and friends it is hard to keep it quiet.  I have a keenly observant and switched on little boy and there is no pulling the wool over his eyes. I pray with all of my heart you never have to have conversations like the one following with your child.

What do you mean I will have a operation?

Well...
(Drawing him into my arms)
Dr Gooi needs to have a closer look at your heart.  They will put something in there to have a look around a bit.

No... (Pulling away) it will hurt.  Will it be pointy? Will it be pointy? No (His bottom lip drops and he fold his arms, brow furrowed)

Silent my mouth pulls into a firm line and I breathe in.

Is it like blood testers? Blood testers are pointy.

(Sam has regular finger pricks to check his INR and occasional venous blood tests as well)

Well, do you know what Sam they have cream now that you put on your skin and it makes your skin go to sleep?  Then you don't feel the pointy things anymore.

(He whirls around smiling.)

That's great!  That's great!  That means I will have my eyes open like this and be brave.  It won't hurt then.

Yep, you will be able to watch and you won't even feel it.  Do you know what they call the cream Sam? (Hugging him again)

What?

Angel cream. 

Cool.

Yeah, I wonder if I put it all over my body would I turn into an angel?

Mum, your silly, we not angels. 

Yeah OK, but it's good news right?

Yep, I think.

(He falls silent and is thinking about it all. )

I guess if they need to look, it's OK.  I don't want to but.

I know honey.... I know.  Well we don't have to worry about all of this until after Christmas anyway OK.

Ok Mum, not until I get presents. I'm gonna get....

And so the conversation continued.

So now he knows and I am sure there will be many more questions.  So different from when he was little and I was his voice.  Sam has his own voice now and he is not afraid to use it.  Pity help them if they forget to use angel cream.

I remember watching other families in the heart ward with their children the same age as Sam is now.  I remember thinking how much more difficult it would be.  I did not have the heart to tell him about any more than the catheter.  Instead I will focus on the significant things in our life, like making this Christmas amazing.  I will make my children delightful treats for afternoon tea, take them swimming and enjoy our everyday activities.  And when the time comes we will deal with what is before us.  God cannot, and is not asking more of me than that. I have to trust that He will prepare all of our hearts.

Calming the Storm

To understand this post, you need to read the one previous here.

Photo from here.

I definitely did not want to go to church on Sunday.  Darkness hung over me like a cloud.  I have learned by now that when I really don't want to go, I really HAVE TO go.  So I sat before church and wrestled with God over it.  As I laid down and closed my eyes I saw a dark and stormy sea, waves many stories high rolled and gales blew salt spray through the air.  Peering through the mist I saw a boat, me clinging to the mast, being rocked violently by the storm.  The vision changed to see below the boat where the sea was dark and gloomy and deep, following a chain all of the way, hundreds of meters to the bottom of the ocean, where I saw the big strong anchor that held me fast.'I am your anchor' came His words. He did not take me from the storm, simply showed me where I was in it.

During worship I sang and I cried tears streaming down my face for all to see, I didn't care.  I knew they wouldn't either.  Instead the church comforted and prayed with us.  A dear man of God gave us a vision that he saw of us being in a boat in the midst of a storm, and then added "Jesus was in the boat with you." He did not know that I had been given the same picture that very morning and now he had added a new part to the unfolding story.

JESUS IS IN THE BOAT WITH ME

He was reminding me I was not alone, that He had not left me. 

On the way home from church in the car I closed my eyes and rested my head upon the head rest, feeling weary after a very emotional morning.  Inwardly the storm still raged but it was different somehow.  Jesus spoke then, 'Peace.  Be still.' I did not hear the words with my ears but in my heart.  He did not roar, the words were quiet, firm and uncontested.  I kid you not, the despair inside of me ceased, the sea became as calm as a lake on a sunny day, and his peace came in like a flood.

I don't know how we will endure all that Sam needs to go through in the future.  I have no control over what will happen, when it will happen and how it will happen, but I know the One who does.  I needed reminding of that and I am so thankful for God's promises to us.

The Valley

I feel so flat and tired.  More so than I have for a very long time.  I feel old like my body and mind are well beyond their years. My spirit is splintered and my heart cries out from within me for some relief from living a life beyond what I can handle.

Yet God is there, nursing me through, yet another season of grief that has arrived before it's time.  For I have already taken the burden of Sam's coming surgery upon my shoulders and it is too heavy to carry alone.  Yet, the world goes on demanding my time, my energy, my attention.  I have a family, a home and a business to look after.  Even weekends which are meant to be restful have become tiresome.  When does the weariness end?

Where is my optimism, my hope, my purpose to drive on through it all?  It is in God, Him in me.  It is flickering at the moment like a candle in the wind.

I will mourn the news that Sam requires more surgery.  I will mourn the fact that our family has to once again endure hospitals and surgery. For it is our reality, like that of many other families.  I will not sweep it under the rug and pretend that everything is OK.  It is not.

Does this mean I am ungrateful, or un-christian, or un-trusting? No.  It means I am real and human and loved by a God who loves me even when I am messy. 

So this is where my heart is on this overcast and humid outback afternoon. It is not pretty, simply honest and hoping for brighter days head.

Sam's Heart Review

Sam was crazy excited to be on the plane to Brisbane. I think pictures speak louder than words at times.

It's bitter sweet really our trip to Brisbane.  On the upside we get to see Mum and Dad (Grandad and Granny), see the river and the green grass, glimpse the ocean and have a little break away.  And then of course we have the hospital visit. 

It was a good appointment.  The staff really made us all feel special and Sam was really happy to see Dr Gooi again.  Yesterday before we left Longreach Sam was given a new stuffed giraffe toy that he had been eyeing off for weeks at the Post Office.  When the women serving saw how much he loved it, she gave it to him as a gift.  Sam named his new friend- Dr Gooi.  So Dr Gooi came with us on the plane and met the man he is named after.

Sam's heart function is unchanged.  His oxygen saturations at rest are 86 and 76 when active.  His blood pressure is spot on and and he is growing in height, though not much weight.  His ECG was right for his condition and his echo showed the same heart function as the one before. After discussion it was decided that Sam will be scheduled for his diagnostic heart catheter in the early new year.  At this time they may also put stents in his lung arteries as they are slightly narrowed.  Apparently this happens with many heart kids with his condition and doing the stents pre-surgery is a much better option as it provides the best possible outcome for the Fontan procedure.  A few weeks after Sam's catheter, he will return to Brisbane again for the Fontan procedure to complete the circulation in his heart. 

Is is what I wanted to hear? No.  Is it what is best for Sam? Yes, in his current condition. When Sam has the Fontan completion he will be considered pink, no longer blue.  It means he may have much more energy. It means his appetite will likely improve.  It means that he will grow and start school with a higher level of stamina.

While I am here in Brisbane surrounded by such wonderful people who are encouraging and full of care, I think 'I can do this.  This is what is best for Sam.' But I know that when I go home and I see him playing and swimming and having fun, it will hit me that I don't want him to go through it.  All of the children I saw today at the clinic shouldn't be there, but like us they have to be.  Because we will do all it takes to give our children every opportunity to live a full and active life.

Is God still on His throne? Yes, He is.  But he is also right beside us, holding our hands, strengthening our resolve, increasing our faith. And you can be guaranteed that today only serves to make me pray more fervently not only for the miraculous, but more than that.  I am praying that we can do all things through Christ who strengthens us.  For it is easy to receive a miracle and walk in healing, but it takes faith like a giant to walk through the fire and not be burned.

Please pray with us:

That Sam will continue to good health in the lead up to all that must occur. 
That the arteries to his lungs will be opened and not require stents.
That we will know God's perfect peace about all that is to come.

Have I given up on God to do the miracluous? NO! But I choose to leave it all in his hands.

Adventures, Lingering, Longreach

 

 

The beginning of November saw a change sees a change of pace for us. Don has just returned from a three day ministry trip in the north west of QLD. Stops at Cloncurry, Julia Creek, Normanton and Mt Isa made sure the days were filled to capacity. Pastors Scott, David and George packed in with Don to visit the churches at the stops. 10 hours of flying in the Saratoga, took them over some rough terrain and it was an enjoyable and enriching trip for all involved.

 Some times the ride was a little rough due to the heat and thermal winds but they all managed to hold their lunch.

 Our country Australia is rough and rugged and brilliant in colour, especially from the air. Being able to fly is a great blessing and saves many hours on the hot, bumpy and dusty roads.

 

 

Normanton church is 3.5 hour to fly by plane from Longreach, or 10-13 hours by car. The aboriginal painting that you can see in the right hand corner is of the last supper. The pastor and his wife cooked Don and the others up a wonderful dinner that night of Mackerel and Barramundi to celebrate the occasion.

 

 

This Crocodile statue is a replica of a real crocodile that was shot and killed by a woman in Normanton some years ago.  It is 28 feet 4 inches in length and weighed around 2 tonne.  Imagine coming across this one while having a dip in the river.  Apparently there is one to rival it's size in the river at the moment.   Fancy a quick swim anyone?

Don was even able to catch up with his sister Lenita in Mt Isa.  It had been over three years since they had seen each other.

And then of course there was little Steele to coo over, the newest addition to our family. 1, 2, 3 awwww.

 

 

 

So here we are doing what we know God called us to do, in a way that is unconventional and not at all how we planned.  It is simply marvellous!  All of His ways are. It is like we have been given a gift and are still unwrapping it one layer at a time.  And each layer of paper that is removed reveals a new blessing, an new gift just for that season. 

 

This Sunday morning was spent at home (a rarity for us) and as I watch my boys play in the warm Longreach weather I see them growing up before my eyes.  Just last night we played our first family games of Uno.  We no longer have toddlers but little boys who are full of life and love.  On Tuesday Sam and I fly to Brisbane for his heart appointment and we go with fresh reassurance of God's goodness to us. A renewed realisation of his greater plan for each of us.  I cannot possible ask for more than that.

 

 

 

One day at a time.

Less hurry, more linger.

Incidental fun, learning and teaching.

More joy, to chase away the blues.

Meandering with God, enjoying His comfort.