Measuring Wealth

When we moved to Highfields we know God was bringing us home, for a time of replenishing. He spoke to us about moving back home and restoring what had been lost to us. We have been here a month now and we see his providence in so many ways. Yes, in tangible ways by paying for our relocation, providing Don with a great job, opening up a whole new world for Avon for me, placing Jack in a school with a dynamic and focused teacher, introducing us to a new church family, and seeing Sam settle and regain his confidence following his surgery only a few short months ago. Honestly, I could go on and on, but you get the picture. This scripture has been pivotal to me in the past two weeks. It is in complete retrospect to what the world teaches us.

The result of humility and the fear of the Lord is wealth, honour and life.(Prov. 22:4)

When I wake in the morning, the words resound through my mind and settle gently into my heart like a renewing gift, a gentle reminder each day that our life here is God's gift and it is good.

With what we have endured in recent years in regard to our travels with MAF, moving from home to home, town to town, state to state, Sam's surgery, and Don's work; this promise from God is like a refreshing drink of water to us. It is reviving our parched souls after a long journey.  Everything is beautiful to us right now; being closer to family, the weather, our new home, new friends, because we know we are in the place where God's blessing resides. And so just as our Pittsworth home was called 'God's Rest', this place is 'God's Blessing'.

We have not despised any part of our journey in fact we have relished in the people we have met and the places we have lived. It was not a fickle journey but one of obedience and love. 

We travel to Brisbane on Friday for Sam's heart review with his cardiologist. Please pray with us for a safe trip and an outstanding outcome for Sam. That his heart shall be strong and endure for the longest time.

Rugged up and happy for Jack's first athletics day. He missed last year's due to us moving around.

Jack came 2nd in his sprint, though they only give participation ribbons in the lower years.

Sam joins in hopscotch at Jack's school.

Jack running in his relay where he caught up where his team was lagging.

The new book I contributed to is now released and I received my author copies from the UK.

Sam is just growing up so much and the boys have only grown closer in our travels.

We are rediscovering gardening. Oh, how I have missed my garden.

One Week-Post Fontan

We have had a really relaxed day at hospital today. Can you believe this little boy only had open heart surgery a week ago today?  Look at him! Praise God with me.

Sam has been wanting to get up and walk around everywhere.  His pain seems to be under control and he is back to being his happy little self most of the time, despite the ugly drains hanging from his chest. 

Today Don, Sam and I had breakfast together in the family room, and played in the playroom, he is even getting up and down every time to go to the toilet, no more bed pans for this little black duck.

 

 

Unfortunately the cannula that was put in yesterday had to be removed today as it would not flush. So he is now cannula free, which is good because his arms are free and bad because if he needs it later they will have to put another one it. 

He does not need blood tests today because everything is within range and his bowels seemed to have settled down a lot now they have changed to Osmolax.  The drains are slowing gradually and at this point, we are only waiting for those drains to dwindle down to very little, before they will be removed and we can go home.

He also does not need his oxygen anymore, which means Sam can move around freely and he is doing just that. His is still saturating 97% on room air.  We are now trying to keep up to him at times.  He thinks that is just hilarious. 

We are still in close obs and just waiting for a bed in the general ward. Please pray that happens soon.  At the moment I put Sam to sleep wearing his headphones, so that most of the noise is dulled.

Please continue to pray that any post operative infection is avoided and that Sam will continue to surge on in his recovery.  In the last few days we have noticed a marked increase in his appetite  and his colour is amazing. 

Sam's steady recovery is due to his fighting spirit, caring loving family and friends, vigilant and compassionate hospital staff and an amazingly faithful God.

More About Day Four

Sam had a bit of a rough afternoon with an episode of extreme pain with cramping in his bowels. After the 20 minute ordeal, he was just exhausted and has felt and looked washed out all afternoon. 

The drainage from his chest drains has also picked up today, which means that he will probably still have to keep them both tomorrow, instead of removing one as planned.

Don and I are both really tired.  Between caring for both boys we are always on the go, with little rest at night for either of us.  Sam's demands are high between trying to keep him well fed, get him in an out of bed with all of his attached wires and tubes, to and from the toilet, using bed pans, changing his soiled sheets and clothes, playing with him and keeping up to date with doctors and all of the other specialists can all be very draining. In between we have to do other things like washing, and letting others know what is happening.

I am praying that in the days to come we will move to the general ward and things will be a little more relaxed. I am also praying that his drains do their job and begin to slow down, so they can be removed.

There is a skeleton staff here at the moment and the streets around the hospital are eerily quiet due to the Easter holidays. Finding food today for our meals was somewhat of a challenge.

The blood test that was done this morning came back low in sodium and needed to be repeated.  praise God the cannula once again delivered the blood after much persistance and patience on behalf of Doctor Kim. God bless that woman.  The results came back the same, which means they will keep an eye on it over the next few days.  Please pray that the cannula continues to behave so Sam can avoid haivng to give blood venously.

In addition to all of this I am afraid that Jack has become quite the Nintendo DS addict due to long hours spent at the hospital, so Don is hoping that if Sam is Ok tomorrow he can take Jack to the museum for a break from our long hospital days/nights.

So this is all of what is swimming around at the moment.  As I type to you, I am giving it all over to God who has the strength to deal with it all.  I certainly do not.

Day Four-Post Fontan

Sam is recovering like a star!

 

 

The day started off with him finally going to the toilet (BM) after surgery. So important for his health and comfort, especially with the other pressure from fluid still draining from his chest.

 

Uncle Brendan and Aunty Jess are visiting today and he was so happy to see them. It has brought a real ray for sunshine seeing family today, especially when Sam is improving som much every day.  They bought him a beautiful card and subway cookies and Sam walked all of the way to the play room with such bravery to get his cookie reward.  He sat up in the playroom for about 20 minutes, almost unassisted and ate subway cookies.  While he was there I gave him a little wash to freshen up and we were blessed with more of his little grins.

 

Can you believe this is all only 4 days after his open heart surgery?

 

His oxygen is being weaned and he is now only on .5 litre.  At this stage another of his drains will be coming out tomorrow and he is now on oral MS Contin for pain, weaning off of the stronger IV medication.

 

He also had blood taken today and they were able to draw that from his cannula that was still in from surgery.  This definitely made my morning.  I am just so thankful that is is still working.

 

He is now eating well and with that comes more energy and greater enthusiasm.

 

Truly we have been given the best easter gift yet.

 

I know that the doctors and nurses are amazing at their job, but it is God's hand and Sam's determination that are steering his recovery.  I am just astounded each day with his progress and give thanks.   

 

Day Three-Post Fontan

Last night we had a relatively trouble free night, until the early morning.  One of Sam's pleural drain collection bulbs became dislodged and there was concern that air may have entered his body through the tubes.  Thankfully the tubes have a one way valve that worked effectively and after a chest x-ray, he was cleared of all concern.

Because of a very early chest x-ray at 4am it was a very long morning of physio.  It is especially bad for him first thing in the morning and is really painful. As the day progressed, he was able to to walk very slowly, trailing with drains and wires without continually crying out in pain.  We all know that he needs to do the physio to get better but trying to explain to Sam that he needs to move through the pain, is very difficult.  Today after his longest walk while he was perspiring with pain and his legs were shaking, he begged me to carry him, and I had to tell him that I couldn't but I would help him walk. Tough times for a Mum's heart. Don has been here with me all day today as well as Jack was visiting with family. The walking needs to increase each day while the pain medications decrease, so please pray that he will be spared the sharp stabbing pains from the drains.

Sam's appetite returned somewhat today and cheese sticks, baked beans and part of a chicken sandwich were his choices.  This all means he will have more energy to recover and heal.

There are some tremendously tough cases with us right now in the close observation room and the level of anxiety in some of the patients is very high, which affects us all. Rest can also be elusive. He has had a super nurse today which has made all of this much more bearable. We are praying that we will soon be in a regular ward room so we can sleep beside Sam and he will get more rest.

We have had some visitors, though Sam has not been very responsive to them we have appreciated them so much.  In the next few days we look forward to seeing more of our little boy's spunky personality return.

This afternoon, Sam gave me the best reward I could have ever wanted for Easter...

His happy little smile.

Happy Easter friends.  I can tell you that being here this Easter brings great clarity to what Jesus has done for us all. It's simple really, where He is there is life and He paid the price so we could have it. Here in hospital where we see so many little lives hanging in the balance, the message has never been more clear... more simple...so beautiful.

Day One Post Fontan

Sam's Fontan surgery was a success. Praise God!

Five hours after he went in, we received the call that we were able to see him in ICU in an hour.  Dr Tom Karl, told us that all went as planned and that there were no surprises.

At about 6.30pm we were first able to see Sam.  We had prepared Jack for how Sam would look.  I am so moved by Jack's compassion for his brother.  It was evident that he feels deeply about all that is happening to Sam. Jack sat all day with us at hospital and never once complained or misbehaved. 

Sam needed a pacemaker switched on for a little while after his surgery to help with the rhythm of his heart until it found it's own way.  He was extubated (breathing tube removed) at 8pm which was nice and early after surgery and he had no problems breathing by himself.  His chest is draining well and morphine and a few other drugs are keeping him comfortable.

I stayed with him through the night, as he woke up quickly and has not slept much at all due to all of the noise in ICU.  He is very thirsty and hungry and was allowed some fluids (very small amounts) at 11pm, but is only having something to eat at breakfast. Last night he had two episodes with pain and this caused him some distress and they had to give him bolus morphine.  It is his chest drains that are causing him pain. After he had the episodes of crying and pain he dumped big amounts of fluid from his drains.  Please pray that they will be able to keep his pain under control. For all of those who like details Sam's Oxygen sats are at 97% and his fingers and toes are warm and the pinkest I have ever seen them.  I can't stop touching them.

In his groggy state, he has been telling me jokes and telling me stories to keep both his nurse and I entertained through the night. I managed to get an hour or so sleep in the recliner near his bed.  Don and I have just swapped for a few hours so I can shower and have a rest before I go back for doctors rounds at 8am.

The doctors are really impressed with Sam's progress and it is likely that we will go to the Close Observation room on the ward by the afternoon.

I hope all of this makes sense.  I am tired but encouraged and amazed.  The sun is rising now.  And with the sun comes more of God's mercy and a truckload of his joy, to help us endure the day to come.

Fontan Time

So, we have received the phone call.

Sam is stopping his warfarin as of now and we will be in Brisbane at the Mater hospital for blood tests and x rays tomorrow morning at 10 am.  He will be fasting from 5am Monday and  it is likely that he may go into surgery for his Fontan Monday afternoon. 

It is all very fast and I have called Don, he is leaving Longreach as I type and driving down with Jack and Gran Watson.  Pray that they travel safely.

There is no one to help with accommodation on the weekend at the Mater hospital so we are using some for the money we have been given to book two night at a motel close the hospital until accommodation can be organised early int he week by the hospital.

We were hoping that our break at the Sunshine Coast would be longer but as long as it all goes well, I just want to do what is best for Sam.

So I wonder if I can ask you a question?  I have this idea for Sam to receive cards in hospital. When we are at home our boys love getting the mail and get so excited when it is for them.  So if you could could you please send a card to Sam and maybe Jack too to the following address. Jack often misses out on receiving things, when he too endures much due to Sam's heart condition.  Imagine how the cards would transform his hospital room.  The cards will be brought down and delivered to them by our family.

Send your words of love and promise to:

PO Box 5905
Maroochydore  BC QLD 4558

Thank you for your love and prayers friends.  The next weeks are not going to be easy but we will triumph with God's blessing and Sam will continue to live and have life in abundance.

Day Five

This morning we had hope in our hearts that today was the day that Sam's blood would regulate and that his INR would be in range, bringing to an end the barrage of blood tests that he has endured in the past week. 

Knowing that he only had to have a finger prick he walked by himself to the procedure room (where he always has his blood tests done) and waited to get the test done.  As he strode down the hallway we passed through a large group of doctors doing their morning rounds and as we passed through the throng he pronounced resolutely,

'No more blood tests for me today, Uh uh uh.  I'm having a finger prick and that's all', shaking his head.

Meanwhile I pray under my breath that all will be well.

After the relatively painless test (in comparsion) the INR cam back at 2.2 and Sam literally danced and cheered all of the way back down the hallway through the throng of doctors proclaiming loudly and with great joy,

'My INR is 2.2.  I'm going home!,' as if to say shove that in your pipe and smoke it fellas.

Which elicited a round of laughter and shock at a 4 year old knowing what an INR even is. 

After removing his final cannula (which caused some distress) and being discharged we departed the hospital and drove to the Sunshine Coast, where we will spend the next few days resting and relaxing.

On the way, we received a call from the Cardiology fellow making sure that Sam was entirely sound and clear of any neurological problems in relation to the stroke he had when he was one.

Shortly after we received a call from Dr Alex Gooi, Sam's cardiologist to tell us that Sam's case had been reviewed along with his catheter results and that Sam's heart was at optimal state for him to have the Fontan surgery, which means he is a candidate.  Next week has been mentioned several times and now we are just waiting for a date.  Sam will stop his warfarin 2-3 days before so we should know when surgery will be early next week at the latest. This time Sam will not be heparanised before surgery will will mean much less distress in regard to blood tests pre-surgery.  We are just so thankful for that.

Don and Jack will drive down this weekend from Longreach so please keep them in your prayers and Mum Watson too as she travels home.  We have been so humbled to see God provide money through loving hearts to help us meet the costs we have for all that this journey entails.  I just stand in amazement at His goodness to us. And it brings tears to my eyes when I read your messages and comments thank you for all of your love.

Catheter down, Fontan Surgery to go. 

Time to forget about hospitals for a few days.

Day One

Sam has finally just nodded off to sleep.  So far they have drawn one lot of bloods from his cannula.  They are checking to see his if his Heparin levels are at the right dose.  They will continue to do this every four hours until they are in limits, so that means 10.30pm, 2.30am, 6.30am etc.  Please pray that they well settle quickly.

Sam's skin has always been very sensitive. He even reacted to the tegaderm that they used today to keep the angel cream on.  The cannula's hurt and sting a little where they enter the skin and then are cold up his arm So pray that they settle down too please.  I asked the nurses for a dose of paracetamol tonight so that he could go to sleep without the little stabbing pains. 

Once Sam's heparin levels are good, they will have to do little else tomorrow except observe so this is what we are aiming for. 

Wednesday is the day that his cardiac catheter will occur. 

Please pray for Don, he has had a really rough day in more ways than one today.  I won't elaborate, just pray.

I am sleeping (yeah right) beside Sam's bed tonight and will be each night this week. 

Hospitals are such strange places, nobody truly likes them.  We are all here trying to make the best of the circumstance in which we find ourselves.

Sam speaks politely to all of the nurses while he eyes them suspiciously, and then as they are finishing up his obs, he reminds them firmly and with warning in his voice that they will not be using a needle on him. On that note, please pray that the cannula that they are using to draw blood remains working well.  We do not need an encore of today's events.

One step at a time, one prayer at a time, each time closer to a life post Fontan.

Two More Weeks

This time in two weeks will see Sam admitted to the Mater hospital for his diagnostic cardiac catheter.  During that time he may also need a stent in his PA (pulmonary artery).  From there his results will be reviewed to make sure he is a candidate for the Fontan surgery that he needs.  Lot's to do, think about and pray about before then.

Yesterday at church we prayed for another couple who are leaving our church to move town.  After we did, Sam asked our Pastor if they could pray for him too.  So everyone did.  They put their hands on his head and on his shoulders and prayed for him.  All the while he beamed and smiled at them giggling every now and then for good measure.  He is just so full of joy our little boy. 

I just want to wrap him up in my arms and keep him like that forever. But I know I can't and so I just have to trust that God knows what He's doing, no matter how much I want to tell him otherwise.

Anxiety Is Not My Friend

Anxiety and stress are sneaky and almost undetectable until you are in their grasp.  I haven't been sleeping well for the last two weeks and it is beginning to show.  It has been warm at nights, and I am sleeping lightly.  I wake many times a night and find that I am clenching my jaw then wake with headaches each day. I already have cracked molars that need fixing, due to stress and cannot afford to have them fixed.  So I am concerned about doing more damage unintentionally. The tension in my neck and shoulders is unmistakable and food has become bland and un-enjoyable. 

It's not like I am laying awake in bed and panicking over Sam's upcoming surgery it is a more sinister and underlying form of anxiety, that seems to be thwarting my attempts at any kind of rest.  As I cover Jack's books for school I am worried about how he is going to go in this first term of year one, with so much disruption.  I feel like I am not going to be there for him, when he needs me and that I am going to miss out on things because we will be apart. 

Last night at about 2.30 as I lay awake the jumble of thoughts that hide in the recesses of my mind throughout the day, come out to play.  I think about the catheter and the fact that Sam's previous stroke was triggered by a clot from the scar tissue in his heart.  What if the catheter dislodges more such clots?  What if the catheter goes wrong and stimulates cardiac arrest? All of these are possibilities. 

How long will we have to wait to know if Sam is a candidate for the Fontan?  Will he need the additional stents in his lung arteries? What does that mean for his blood thinning meds?  I don't want him to be on warfarin forever. These are the thoughts that plague the dark hours of the night for me. And then I pray and try to sleep, flitting between the conscious and somewhere just outside of sleep.

All of this means that I am less the Mum I need to be during the daylight hours.  I am short in temper, and not a whole lot of fun, which causes me to feel even more guilty for not enjoying the time I have with my boys now. 

It my all seem silly to you, but I need your help.  I need you to pray for me before you go to sleep tonight.  That I will know peace and sleep in a very intimate way, because as of late we are mere acquaintances.

I know that God hears me call out to Him, I am just weary of the battle and was hoping that someone might add their voice to mine. x

More About the Catheter and Pending Surgery

Today I was contacted by the Care Coordinator from the the Catheter Lab at the Mater Hospital.  As the call progressed I felt the nausea rise up inside and threaten to form a lump in my throat.  The facts:

Sam's diagnostic (pressures and sematics), and possible interventive (stent in pulmonary artery) catheter is scheduled for Wednesday the 20th February.

We will probably fly out on Sunday the 17th February and arrive in Brisbane and have to find some way to the hospital staying in Ronald McDonald House overnight.

Instead of pre-admission Sam will be admitted directly two days prior on the Monday by lunchtime.  This is due to him being on warfarin and he may need to be put on a Heparin drip leading up to the procedure.  I will be staying with him on the ward.

After the catheter he will need to be in hospital another 1-2 days to reinstate his INR levels.

In essence what is supposed to be a day procedure or sometimes an overnight experience will be more like a week in hospital. In this time I will be with him on the ward.

Following that the results from the catheter will be taken to surgical conference and whether Sam is a candidate for the Fontan will be established.

Surgery may be possible within one to two weeks following this conference.

This means we may be able to stay down on the coast until the Fontan is done and dusted (insert more nausea here).

Don and Jack will come to Brisbane for Sam's surgery after the Catheter.  Jack will have a few weeks off school and hopefully can take some work with him to do.  Don will take leave without pay, because we have not been here long enough for Don to have accrued sufficient leave after the mandatory Christmas holidays (insert more nausea and silent prayer here). Rent, bills, ability to eat and provide for family-only God knows. 

In between the catheter and surgery we are hoping to escape to the Sunshine Coast for a week or so (staying with family), to break the hospital time, recover and rest.

I would be lying through my teeth if I told you I wasn't worried.  I have no idea how it will all work, how I will go leaving half of my family here and being strong enough to support Sam in what I know he will hate.  I hate it, how can I expect anymore from him?  And yet, I will fight the tight knot in my throat that has formed this afternoon form one phone call and bury the thoughts focusing on Christmas to come.  A time or fun celebration and hope.  We can always use more hope. 

God is bigger than any giants we have to face.
God is bigger than any giants we have to face.
God is bigger than any giants we have to face.

I whisper it over and over again to calm the anxiety in my heart.

On a lighter note, the local day care has  a Kindergarten program and has been very supportive in allowing Sam to commence Kindergarten mid year, next year.  He has been looking forward to Kindy all year, and although it will be delayed it will be worth the wait. I know he will be thrilled with that and I can use it to encourage him as they put in cannulas and take his blood.   You might think that sound harsh but they are my true thoughts and what I think about ahead of time to help my little boy.

For those who follow this blog and pray for us, thank you.  I know you read even though you don't leave a comment (thought they would be nice at times).

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.

Fragility and Fierce Determination

I am continually reminded about the fragility of our lives here on earth.

This past week I have learned of two families who have lost loved ones, one a little baby, another a Dad.  At different stages in life, but each so precious.  This happens on a weekly basis.  I watch as families hearts break and re-break as they realise their separation from those to whom they will forever love.

Sometimes I wonder why I continue to search and to pray for those who need encouragement, prayer and love.  Because it hurts to watch others suffer, it hurts to comfort others when there are no words that can possibly be their balm.  That doesn't mean that we shouldn't offer our words.  For I have learned in our own hardship that silence is sometimes the worst sound in the world.

I go through feelings of empathy, and frustration as I reach out.  I experience guilt, for my own son lives, when others have had to let theirs go...for a season. 

However I know why I persist..

Each of these things drives me to  pray, to call out to God to make a difference in the lives of those who are in anguish. To make something beautiful out of something horrific, to draw fragrance from a flower that is crushed and bruised.

And I see miracles...I see medical breakthroughs, illnesses healed, people transformed, not by my hand but by the hand of God.  And that desire to see breakthrough drives me onward, even though it hurt,s to make sure that hope remains alight. To search for that flicker of light in situations that seem so dark.

I may be a Mum at home, but I can reach all manner of people through blogging, emailing, Facebook and other communications.  I can reach out to the Mums at school, and the people I meet at the shops and just sit and listen to them, smile and offer an encouraging word.

It has been four years now and my life has been changed forever.  I can no longer look at the world the same way after what we live with Sam.  There is more to this life than what we can see.  It is real and tangible and is tightly entwined with our feelings, thoughts and actions.  We are more than flesh and blood.  And I have to believe that as I reach out to others in love, changes are made not only in the countenance of a person but also in their eternal spirit. 

As we head to Sam's next heart appointment on Tuesday, I wonder about this next part of our journey.  This past four years has been a steep learning curve and I wonder what God holds in store for us next. I wonder if you will claim his promise with us this week:

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

For I am a fiercely determined woman, who has a fiercely determined son, and we serve a fiercely determined God.

The Rip Tide

The last month it seems we have been caught in a tide that has dragged us out to sea.  We seem to be floundering in the water, our arms weary from the constant treading. 

Don has failed his flight exam for his commercial pilot's license for the second time today.  I just want to cry really.  For him, for myself, for our weariness and lack of hope.  There seems to have settled upon me a sense of despondency, enlarged by the fact that we are far from home and and the comfort of familiar family and friends.  I am tired of the fight, and Don must be far beyond that.  I have watched him labour and toil for the last 7 months with little rest, all the while looking for the silver lining.  He is exerting his best and yet, it is thrown back in his face continually that it is not good enough.  And yet he remains, plodding along, while I struggle at home to wrestle with God and his appointment to this calling, when there seems to be very little breakthrough.  Does God see how we struggle?  Yes, He most certainly does and be bears it with us.  Does He see that I can't make our finances stretch any further?  Yes, He certainly does and He supplies.  Does He still want us here?  Yes, He certainly does and reminds us again and again.

I struggle to write the new book about God's promises, because we battle to live in their truth each day, and are weary for a break from the constant onslaught.  Who am I, I wonder to pretend to tell others to live in God's promises if I am of so little faith?  Oh God, where is my faith! It is like it has been robbed from me while I have slept.  And yet, still I stand.  I stand because He gives me strength, I can own no portion of it.  Please pray for us and help us fight in the spirit.  Our enemy looms large but we know who is victorious. 

Don is on his way home after his defeat today.  May God give us both the strength to keep going. 

So again, I raise my head and look to the battle front, raise my shield, and thrust my sword high. 'CHARGE'

Praise and Prayer Points

As there are many things swimming around in my heart and head at the moment, I thought I would share them with you, so you can celebrate and believe with us.

Praise with us:

• Jack is loving school and God answered his prayer by sending him a friend in his class that knows Jesus. He is loving writing and reading, so this is awesome.

• Sam loves Kinder.  He is exhausted afterward but so energetic while he is there.  He absolutely adores playing with the kids.  His introductory line is : 'Hi guys, I'm Sam', so cute.

• Sam's cardiologist is in the process of writing us a letter stating that he is happy for Sam to live wherever we are, as long as he can attend his appointments every 4-6 months.  This will be forwarded to MAF, so that our application can continue.

Pray with us:

• Don is (weather permitting) resitting his practical flight exam tomorrow for his Commerical Pilot's License.  This would take a load off his shoulders and be a really awesome early birthday present for him (and all of us).

• I am continuing to write my next book and though I am over halfway, I lack the time to really get into it.  I get distracted so easily.  Pray for me to have a focused mind and perseverance to complete what I know I must.

• Pray for safety in travel, as Don is travelling a lot both in air and on the road. And pray for us that despite the changing weather the walks to school and Kinder will be pleasant.  Also pray that our car continues to motor along, as it is well overdue for a service.

• Pray for Sam's continued healing, good health and growth.  He is doing really well at present and seems to be back to his normal self. 

• My Dad is going to have surgery on his foot tomorrow, a surgery that has quite a long recovery.  Please pray for his healing but also for him to rest, relax and make the most of the time he has to be  stationery.

Thank you for believing with us for these things.  Sometimes a monthly newsletter is just not enough! 

Also if anyone has snow gear that they think might fit us.  Could we please borrow it for the Winter if you don't need it?  We are really looking forward to seeing the snow this year and do not have the proper clothes to go.

Love to you all. xx

Struggling

I wonder if I can just share my heart with you today.

I have noticed a significant change in Sam's energy levels in the last few days.  He is not sick.  He just has very little energy.  He slept for 2 1/2 hours today while Jack was at school, when he normally doesn't have a nap at all.  When I went to wake him up (yes I had to wake him, or he would have kept sleeping), he told me that he was still tired.  I have noticed he is more breathless than normal and he has dark circles under his eyes.  Just in the last two days his eating has also decreased noticeably, he has gone back to preferring to just drink and eat now and then.  He is hurting himself and is more clumsy because of his seeming lack of energy.  When he plays he often lays down and plays lego or lolls around on the floor. 

How are you feeling buddy?

Just tired, so tired.'

Do you want something to eat?

No, but yes, not really. My head feels tired.

How does your heart feel?

Puffed.

I know the doctors told me that the tricuspid valve in his heart is leaking more than normal.  Now I am concerned that it may have got worse and that he may need surgery more quickly.  I have been watching and praying for the last 24 hours, but I need your help. 

I am sad.  I want to cry because when you're three, you are meant to have boundless energy.  Instead I have to drag, push, or carry Sam to make the distance across the road. I know he is to go to Kinder soon, and I am worried about sending him.

Sam has such grace in his limited mobility.  When he labours, he just asks for help. 

'I puffed, can you carry me?'

Then I pick him and and I am reminded that he is still not putting on weight.  That his slight little frame is no burden to me.  For a split second I am thankful and then I reprimand myself for even thinking it.

And so I am watching, praying, hoping and waiting. 

Watching him slow, and struggle.

Praying for a miracle.

Hoping that God will answer my prayers.

Waiting to see the miracle he needs.


Oh God,

You are mighty to save.  I know you are with me every second of the day, I feel your presence like the comfort of a warm fire. And yet my heart is breaking, because my son's heart is broken.  You have given me a promise for him and I cling to it Lord.  I cling to You and your Word because I know it is true.  Heal him Lord, restore the valves, the chambers, the arteries and vessels Lord.  Create in Sam a new heart, one that comes from your hand. Only you can see inside of his chest Father.  I can do nothing, and you can do all things.  Let him wake in the morning and be full of renewed energy.  Let him be whole and healthy and let him run like never before.

And yet I say not my will...but yours be done, because I love you more than any other. 

You have held us and never let us down.  May your name be celebrated even now, in this place of uncertainty. 

All my love
Nicole

Lemon and Lime, Hold the Bitters

The last few weeks have been monumental.  Don has been continually studying/cramming for the last 7 weeks.  He passed two exams only to fail the third.  The boys and I have been to Qld, where I attended the Word Writers Conference in Brisbane and then had a few days holiday with family.  Since we have arrived home we have been very busy, and the boys and I have had a head/cold/fever.To top it off Centrelink called yesterday to inform us that they were decreasing our payments as they had made a mistake with their calculations. Oh dear.  I am sure that you have days like this, sometimes weeks even, where everything just seems to go pear-shaped.

The world suddenly becomes much to big for it's boots and you feel like you are about to be buried under a pile of rubble. 

Do not despair, God is there.

He has not gone somewhere just because things are not going swimmingly in your life, in fact if anything he is closer than the air your breathe.

Do not allow bitterness to settle in your heart, but let yourself be transformed by the renewing of your mind (Rom 12:2)

Do not compare yourself and your situation to others around you.  Each of us is on our own unique journey, and though we may encourage and uplift one another, comparing will do you no favours.  People will always be better off than you, people will always be worse off than you.  Your problems are as significant as the next persons and your troubles will not overcome you, if you give them over to God in prayer.

God can take what is broken in your life and turn it around for your good.

Harbouring self pity and bitterness in your heart bind God's ability to help you.  He will not force you to choose him.  He has always given us free will. 

I am not rebuking you today, I am reminding myself and sharing with you in the process.  I will not pretend to be more than I am.  I would be nothing but for the mercy of God.

We know many families going through life changing circumstances and unimaginable heartaches, we know people that are struggling to pay bills, have ongoing depression, some who are watching their kids struggle daily with their health, and some who have lost them this side of heaven.  But I will not take on their burdens or they will crush me.  Only Jesus was designed to carry the weight of the burden of sin.  He did it all on the cross for us so that we would not have to crushed under the weight.  I warn you, as I warn myself, do not harbour disappointment, anger, resentment and offence in your heart.

I will cry with them, I will laugh with them in victory, I will carry them to God in prayer.

'Father God refresh my mind and heal the wound left by bitterness in my heart.  Forgive me.  I love you.  I wait for your joy in the morning.'

Sam's Heart Review - We need your prayers

We approach the hospital, we see the familiar corridors, the smell comes flooding in and I suddenly detest McDonalds...


What are we doing here Lord?  Why have you brought us back to this place?

We attend the clinic for Sam's Heart check...inwardly we cringe but keep bright and cheery, keeping Sam excited to meet his new doctor.

 I feel sick but I smile, because I have just seen the faces of so many parents who are broken and weary, wafting in and out of the Heart ward with the 'hospital look' that says, 'I am existing, but I am a shell.'

As we sit and wait in the waiting room, a teenage girl sits across from us, cannula still in her arm, she has tears sliding down her face and hangs her head low, she is broken.  Can anyone see her?

Where are you Lord?  She needs you?  

We go and Sam has his ECG and Echo. He is so brave and climbs up onto the bed by himself, he even helps remove the stickers.  I encourage him to lay still so they can take a good reading.

I'm holding on to you Lord.

We wait for another half an hour to see his new doctor.  We greet and Sam is happy to meet 'Dr Foormer' (Dr Andreas Pflaumer).  He tells us that Sam is doing fine, that all is well. Then, that the leak in his tricuspid valve has increased and that if it has not changed over the next 6 months then intervention may be needed.  That they want to start talking about the Catheter and the Fontan, because we are talking about going North in the next few years. Through the doctors eyes this makes sense, I can see his reasoning.  But I am not a doctor, and I am not reasonable about anything that means that my son must endure more pain.

What!  Where are you Jesus?  Is this your idea of a miracle?  Do I have to see him endure more pain?  Do We have to endure more pain?  I know you can take all of this way by just a word from your lips.  So where are your words?  Surely this is not your plan for us. 

We walk back to the car in silence, buying coffee from nasty McDonalds to get home.

As we drive home, the ache in my throat intensifies...

I can't do this anymore, I am weary from the fight God, not just weary, I have had enough.  I don't want to hold onto the hem of your garment anymore, it hurts too much.  You know I don't have the strength to endure this again. My spirit is crushed by the thoughts engulfing me, and cannot be made right by human hands.

I see a picture of a hand coming out of the heavens dangling a white hankie, the miracle we need, and me jumping like crazy to reach it, but it is just out of reach. I think I jumped most of the way home in the car.  The ache moved from my throat to my heart, as I look at Sam asleep in his car seat, worn out from the big morning. 


I am sorry Lord, I can't do this anymore.  I am meant to go on TV tomorrow and talk about the God of miracles, and I am not feeling that right now.  I am feeling angry, and like I am about to suffocate.

When we arrive home I slept for two hours.  I had nothing left.

When I awake and as I write He speaks:

Remain in me, you have tasted of my goodness and you know I will no let you go.  Remember the new promise that I have given you.  Claim it today and watch the new day come.  You may broken now, but it will not last for ever:

Restore our fortunes. Lord

as the streams flow in the desert.

Those who plant in tears

will harvest with shouts of joy.

They weep as they go to plant their seed,

But they sing as they return with the harvest.

(Psalm 126:4-6)

So this is where we are, right now at 4pm in the afternoon.  Pray that God can heal my ache, so that I may go and tell the world how great He is.  For He is above all things, even when I don't FEEL like it.

As I write this I have a voice whispering to me that 'the result was favourable, that I have no right to complain, and that there are many others out there that are far worse off than what we are'.  I would like to say that each of us is on our own journey, and despite the fact that we are all in different places, does not diminish the fact that the battle is any less real, or hurtful or significant.  God bless you for praying for us when we really need it.

Faith in Action

We are in the process of completing the MAF application papers.  It is an extensive process which includes medicals, psychological profiling, a CV, as well as large application document, in which we need to provide an autobiography of our life to date.  We are enjoying most of it.  I completed part of the psychological testing yesterday, and Don will complete it in two weeks time.  It's quite interesting, and tells you more about yourself while you do it.  Or maybe I am just weird, and like this sort of thing.

There is one thing that I have been dealing with in the back of my mind all week.  It is something that I need to ask you to stand with me in faith for. 

On the medical forms there is a declaration that the doctor needs to sign.  The declarations states that we may be asked to serve in areas that have high heat, humidity, a lack of immediate access to medical care, as well as social and physical challenges.

Do you see my concern?  No doctor in his right mind would sign a declaration saying that these conditions would be OK for Sam.  I am not worried about these things as I know God will look after Sam, and always has.  My concern lies with the fact that our acceptance to MAF may be hinged on this medical report.  I know that God has called us to serve MAF, it is undeniable.  And so each day we are stepping out in obedience, knowing full well that in the world's eyes it looks foolish and folly.  That if we were to look at the hand we have been dealt, we would throw it in.  Yet, we have been asked by God to keep our eyes firmly fixed on him, and not at our situation.  We have watched in in the last few months as CASA has continually tried to deny Don a medical certificate, only to watch him pass test after test with no problem.  Why should we believe that Sam will be any different?  Surely if God has called us, he has a place that is handpicked by him, ready for us to serve. 

It is a battle for me, because as I fill in the forms I am painfully aware that my little boy's body is not the same as everyone else, that his limitations are more pronounced.  And yet, time after time, as we have his check ups we see his heart function is tremendous, and improving. 

Then he said to the crowd, “If any of you wants to be my follower, you must turn from your selfish ways, take up your cross daily, and follow me. (Luke 9:23)

Turn from your selfish ways...
If I am to follow God in his leading, I must turn from my own thoughts, my own doubts,  and my own circumstances.  This means letting go of the worry and standing firm, even when the enemy whispers to me that it is a joke to even complete the papers.   

take up your cross...

The cross is represtative of our identiy and salvation in Christ Jesus.   I must live as Chrsit has asked us to and in the knowledge that I live in the Kingdom.  I must dare to be different and walk in the new life I have been given daily. This is what what it means to pick up your cross. 

and follow me...

Only Jesus can hold my gaze.  If I rest my eyes, even for a second on the what lays before me, I will be undone.  The amazing story that we were told on Sunday at church, was of the eagle and how it is the only bird designed with special glands in it's eyes so it can look directly at the sun.  All of the pesky birds that try to attack the eagle are undone when the eagle powers upward toward the sun.  One by one they all drop away becuase they are not designed the same as the eagle.  
I need to be just like this eagle.  I need to keep powering upward toward the sun, and as I do all of these things will drop away. 

Living in God's Kingdom is not easy, but it is rewarding.  Will you stand in faith with me? Will you pray with me and encourage me with some scripture?