My Cup Overflows With Blessings

We have been in our new home at Highfields for almost three months now, though at times it feels much longer. It's four months since Sam had his Fontan heart surgery and to look at him now, you would never guess that his heart was so altered.
Don has settled back into his work with the Blackhawk team like a duck in water (pun intended for those who know Don's association with ducks). A few short weeks after arriving in our new home, Boeing advised the Blackhawk team that the Blackhawks would be winding down at Oakey and that the team was advised to be re-allocated or find new employment by Christmas. Well, that tested our resolve somewhat. However, we believed that God brought us back here and so we prayed and waited. As it happens we found out last week that Don will begin training to work on the Kiowa Jet Ranger helicopters and therefore is well equipped to transition to them when Blackhawk winds down. (Insert giant sigh of relief and shout of adulation to God here).

My Avon business was slow to get going in the first campaign but with prayer and persistence I have seen a massive improvement over the last month and I am just so encouraged and thankful to have a job, where I can be with my boys and help out at school. The book 'How Prayer Impacts Lives' was also released this last month, to which I contributed so that was wonderful to see come to fruition.
In between all of this we have all had the flu in the last month, meant the children basically raised themselves for a week or so there.

Jack has settled in better now to his school and I have seen big improvements in his work. The fact that he wants to read now, just does my heart no end of good. He and Sam look forward to reuniting in the afternoons after school and continuing their superhero games.

Sam is recommencing Kindy on Monday for a day a week, for the first time since his surgery. He is very excited. He is also beginning swimming classes on Tuesday. To see that he has enough energy now to try and swim is just so wonderful. Sam has also begun to see a psychologist at the Toowoomba Hospital once a week. I knew he needed help to overcome his fear of needles, blood tests and ECGs but I was still in two minds about psychologists. There is too much stigma surrounding that profession. So tucking the stigma away in my handbag, we attended the sessions and will continue to do so over a long period of time. His doctor is excellent and it is a play based approach, which at this stage he seems to be enjoying. I am sure with age, God's help and medical help, he will learn to master the fear that so consumes him surrounding these procedures.

 

For now, I am so thankful to all be well and nearing the end of the Winter months. The change of season is in the air and the ferocious winds today seem to be driving away the remnants of the chilly Winter air. We have a real sense of peace in this place, unlike we have had for some time.

 

The psalm that follows is often recited at funerals as it seems to bring comfort to those in times of grieving and gives hope. For me, now in this time, God is whispering into my ear to remind me of his presence in our life, the one we are living now. They are more that words of promise for another time, these are words that speak of our life now. These words come to mind and resonate within my soul today. I see the words below reflected in every area of our life and that is what brings me peace.

The Lord is my shepherd;
    I have all that I need.
 He lets me rest in green meadows;
    he leads me beside peaceful streams.
   He renews my strength.
He guides me along right paths,
    bringing honour to his name.
 Even when I walk
    through the darkest valley,
I will not be afraid,
    for you are close beside me.
Your rod and your staff
    protect and comfort me.
 You prepare a feast for me
    in the presence of my enemies.
You honour me by anointing my head with oil.
    My cup overflows with blessings.
 Surely your goodness and unfailing love will pursue me
    all the days of my life,
and I will live in the house of the Lord
    forever.

Psalm 23

 

 

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.

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 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 Two Post Fontan-Our Little Warrior

We have been blessed tremendously today and it has been a huge day for all of us, especially Sam. Sam walked to the toilet first thing this morning and has in fact been up and about several times today.  He has also been doing physio and breathing exercises. 
The area around his right lung is draining the most fluid and sometimes causes him so much pain, that it breaks through his pain medication. After consultation with the pain team today his pain relief has been changed from morphine to Fentanyl and we have seen a phenomenal improvement in his pain
management, mental state and his general well being.  His is also on a line of pain relief that is given a top up before he had to do anything too strenuous, just by pressing a button.

He has been awake more than asleep today and is much calmer in himself today even engaging the nurses in conversation at times.  What I wouldn't give right now to see his cheeky smile once again though.

Sam is also on some fluid restriction but he is doing OK with that.  He has not wanted to eat much at all yet.  We are hoping that tomorrow that may improve.

Today at lunch time, he was sedated with Medaz and his pacing wires and sternum drain were removed.  While that was happening I also asked
the nurses to remove any excess tapes and his
ng tube, in an effort to spare him more than he needs to go through.  So now Sam just has his two pleural drains remaining, the right much more troublesome than the left.These two drains will likely remain for some time. His chest x-rays and echo look great and his heart function is still really good. 


We have checked into Ronald McDonald House this afternoon for the next week and we will see what happens after that.  They only had a week available at this stage.

Each day is very hard, on all of us.  But I cannot tell you how humbled and thankful I am that Sam's surgery and recovery to date have been excellent.  A couple of times now when doctors thought there may have been a problem, it just evaporates and his body changes response.  To see him soldier on with his physio today, despite the pain and to actually ask to get out of his bed, made me more than proud. I can't find the word that describes how it made me feel.  I know that he is being enabled by supernatural strength.  Today God reminded me why he is called Sam.

Sam for Samuel, because he will always be mine.

Sam for Samson, because he will have strength and determination that comes from me.

God's promises never fall short.

And do you know what? It sucks that Sam has to endure such things and  that our family has to walk this road, but We will not dwell in pity or negativity.  We are blessed beyond belief.  We know what it is to walk a hard road, so when times are not good or we think life is tough, we look back and realise how amazing each day we are given is.  Each moment is precious, and we give thanks even for the tough ones.

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.

Surgery Day

This morning Sam fasted from 5.30am, in preparation for him to have the Fontan surgery.

We presented to the Day Unit at the Mater hospital at 8am and prepared for a long wait.  We were unsure as to whether Sam would indeed have surgery today, as they were making a space for him and it depended on many factors including bed space.  Like clockwork we watched each of the pieces fall into place.  Paperwork done, observations done, anesthetists and doctors came to chat. They needed more blood from him, but agreed to do it while he was asleep in surgery.  A volunteer even spent all morning with the kids in the waiting room and played with them to keep them occupied before surgery.

At 11.15 we were taken to the preparation room and did the final checks ready for surgery.

At 11.30 Sam and I were escorted to the theater after he said goodbye to Daddy and Jack.  He wanted them to come too, but they could not.

He was happy to see all of the doctors and even happy to sit in on the bed.  he thought the bubble gum smelling gas mask was funny and played with it, until we had to keep it on.  Then he didn't like it and fought hard to get it off.  In the end we had to lightly restrain his arms and legs while tears ran from the corners of his eyes, while my own heart felt like it fell out and the ground swallowed it. 

I kissed his wet little cheek as he drifted off to dream land, let go of his hand and was escorted back to Don and Jack.

The surgery will take 3-4 hours.  We will then be able to go and see him in ICU where he will be at least the next few days.

Even here in this place we have peace.  Peace in the knowledge that God had this day planned down to the second.  Not one detail escapes his notice.  So even though I feel broken that Sam has to endure such a thing, I have tremendous hope that exceeds and overshadows all fear.  Because when I close my eyes I see things differently.

When I take him into surgery....I close my eyes and see him smiling and playing like never before.

When I kiss his wet little cheek..I close my eyes and see him going to Kindy and school and playing with his friends.

When I see him drift off...I close my eyes and I see him in his own bed while I tuck him in snuggly at home.

Yep, hope is what I have, and in God I will trust to do all of this and more than I can imagine.

Back In Brisbane

We are all together again.  I cannot express in words how wonderful it is to have and hold my family close again.  We have only been apart a week but in hard times it feels like a month. Don and Jack arrived at Buderim this morning at about 5am after dropping Gran home in Bundaberg. Fourteen hours of driving means that we could all drive to Brisbane together this morning.

Sam had his pre-surgery bloods today, which as you know is quite traumatic for him.  Having his Dad and big brother here, helped to give him extra strength.  He also had a chest x-ray. It is amazing to see his sternum wire together in 8 different places in the x-ray.

Sam will fast from 6am tomorrow and we will be over at the hospital again at 6.15am.  They are trying to get him in to surgery tomorrow but it may also be Tuesday.  We just have to wait and see. While he's in surgery and under anaesthetic they will also remove the dressings from his groin where the catheter entry point was and two of the heart rate dots that he refuses to remove. 

And this afternoon we are trying to do as little as possible, just enjoying each other's company.

Can I just say thank you to all of you who are helping us. Sam's heart journey is a whole community affair.  People who pray for us, offer us help, make things for us, help us financially, look after us, love us, visit us, call us, message, people who are just there to talk to, people who show us random kindness and care. We love each one of you and I want you to know that without you our journey would be a very frightening and lonely place. 

Catheter Countdown

Picture source

On this day in a weeks time Sam will be having his cardiac catheter.  Then we will finally know what is going on with his heart in more detail.  It is then that we will know that he is a candidate for the Fontan operation.  You see not everyone with Sam's heart condition is a candidate.  If the pressures in the heart are too high then the Fontan is not an option. So Sam's heart has to be within certain limits for the operation to be an option, and be a success.  It is only after his catheter and after the results are reviewed on Friday next week, that we will have some indication when the surgery will go ahead.  Many people keep asking when the surgery is, but the reality of the situation is that we don't know.

Once we have come through the valley of catheterisation, we then come to the foot of the looming mountain of Fontan.  At least this is our aim.  If not we could be slung into vast space into wait and heart transplant land. (Sorry, I need to make light of this, otherwise it could eat you up inside).

The wait makes me weary.  The planning has to be done, but  most of the time I procrastinate, finding anything to do but what I know I must.  I spend some time each day with God just chilling out and listening to some music.  It is when I feel him nearest and as I close my eyes for just a few minutes I feel His peace settle over me and I can then carry that peace with me through the rest of the day.  I know God is always with me but these times are special to me.

I feel so guilty sometimes just wanting for this time to come and go, when I know Sam has to endure more pain.  What kind of mother thinks like that?  Shouldn't I want to be waiting as long as possible? But I don't, we have been waiting since Sam's diagnosis before birth knowing that this day was coming at some point, hoping that it never would.  I remember meeting families with their children in hospital having had the Fontan procedure when Sam was only having his first surgery as a baby and thinking how blessed they were to be on that end of the three stage procedure than where we were.  Now, I don't know what I feel, definitely not blessed in this regard. 

Sam is impatient he just wants to go and get his test and operation over and done with so he can go back to Kindy and come back and see Jack. In his words:

I'm just gonna say, Hi Dr Gooi, I'm here to have my test heart. And then I will go to hopstibal and then I will come home and say bye.  Dr Gooi is funny.  And I will have to wear a maks (mask) and I will go to sleep'

Even after the Fontan, Sam is not fixed.  His heart cannot be fixed with human hands.  HLHS is not a curable condition.  They just try to make the heart last as long as they can.  Some hearts respond really well to sugery, others do not.  We don't even want to go there yet.

This blog can be pretty messed up some times, but that's because my life is pretty messed up in many regards.  I am not trying to present some image of a woman who's got it all together, because I'm pretty much as far from that as you can get. But...I do know that God cares for me and my family and I can speak of his miracles and His love for us, even in our disrepair. And when He gives His word he never goes back on it. 

God and Family

 

Family and God

I just can't imagine how our lives would look if those two were ever separated. I'm not even going to try.

An Unexpected Gift

Today brought much excitement and joy in our home.  Our church family at Reach Christian Church, Longreach blessed us beyond what we could ever ask for or imagine. 

Firstly Sam was given a wonderful gift of a truck and trailer from one of the men at our church.  To say was excited would be an understatement.  He has decided that the truck will be Jack's too and they will share.  Thank you so much for bringing a smile to Sam, you know who you are.

We were also given a gift as a family of an iPad mini! Wow, wow, double wow.  It is something I never dreamed would happen.  For a while now, we had been wanting to get one, but with us being on one wage for the longest time, luxuries like this were well and truly out of our reach.  It will be such a blessing to us, especially while Sam is in hospital.  When we opened the gift together I could not breathe, I was just so blown away, that these people that we have come to know over the last six months would do such a thing of love.  And we are so humbled that God knew the desires of our heart and would provide such a thing for us.

In addition to this the church has also given us a portion of money to help us in the time when we are going to be away.  This made me cry happy tears.  This will mean that we can pay rent for another week, so Don and Jack can come down when Sam has his surgery.  With Don being at his new place of employment for only six months means that he has not had the opportunity to accrue much leave and we were concerned that we were not going to be able to pay rent and bills.  This gift will help us in this regard and shows us that God has not forgotten about all of the practical parts of Sam's surgery and all that goes with it. For the last few weeks these things had been weighing heavy on my heart, being the budgeter in our family.  And so I have been praying and waiting, waiting and praying.  In the last few weeks we have also been given other gifts in this regard, all helping to make things easier. 

And because I am honest I will also add this...

It also made me cry humble tears because in the last few months with the kids being sick and me being so focused on Sam's upcoming surgery, making Longreach our home and making sure our family is on track, I feel like I have not had time to make good friends here in Longreach.  Everything has been so busy and in a way I have also closed myself off trying to sort out my own heart and head.  So to be thought of in this way, and given such a gift brought first a sense of shame in my own behaviour and then thankfulness for other people's love. Thank you Reach Christian Church, we love you.

In addition to this we have seen Sam bounce back from his illness this week with such vigour.  After our trip back to Barcaldine this week for the dentist, all should be done in readiness for us to be on our way.

And now, one week before we are due to fly out, I have a renewed sense of God behind us in love and marching before us in victory.

If God is for us, then who can ever stop us.

Hear Me Roar (again-I'm sure I've used that title before)

We all have these weeks.  The ones where everything goes pear-shaped and you see to see your life through a microscope as some small organism.
So we have all just come through a nasty bout of gastro, following Sam's debut week at Kindy.  Not the best of starts, but hey if you're going to lose weight it's a sure fire way to manage it.  Unfortunately Sam's weight loss was not needed and he will need to spend at least the next two weeks eating packets of Tim Tams to reacquire that which was lost. Don managed to escape unscathed, however permanently etched in his mind will be the ever resplendent vision of me in all my sick glory.

And because I have been tired and sick and trying to still be Mum and wife to some degree, I have been a little emotional.

One of Sam's little heart friends Kobe had his Fontan operation last week.  the same operation that Sam will need in a few months.  I have been watching their updates, praying for them, crying with them and rejoicing in small mercies.  When I see the photos of Kobe with the big scar down the front of his chest the drains that hang from his midsection, the pain in his eyes, my own heart breaks.  For when I look at him I see Sam and when I hear his family's pain, I feel it too.

'Don't look at it! Don't watch his updates', some may say.

I cannot do what you ask.

You see I cannot just leave Congenital Heart Disease at work and then come home.  We live with it day in and day out.  We see it take Sam's fellow warriors home far earlier than should ever be.

'Have faith, everything will be OK' I also hear from others.

I tell you, I have faith.  

My faith is bigger than locking myself up so that it doesn't hurt.  My faith is raw and in your face.  It makes me cry and feel and love and roar when I'm angry.

Roooooooooaaaaaaar!

Did you hear me?! I hate CHD and what it does to our kids to our families and our friends! But I refuse to believe that our suffering is for nothing and even these broken, hurtful shards of our life will be made to be something beautiful, given to God, given time.

God did not make me meek, nor did he make Sam that way.  God gave Sam a protective and strong big brother in Jack, and a Dad who is tall and strong in heart, that can hold him firm.  It is no accident that God gave us a heart kid.  It is no mistake that the other Mums and Dads I know have the same path we walk.

Now I know you may be sick of seeing my posts on Facebook about Congenital Heart Disease awareness this month, but for each new person who reads my posts:

another learns about this horrible disease that steals our children's lives

another dollar is given to research; and

another prayer is sent heavenward to bring the day of cure closer.

It is no mistake that my birthday is on Valentines Day, for every year I celebrate life, I celebrate the life of heart kids everywhere.  Think of them when you see a heart on your card this Valentines Day.

 Sam in Melbourne's Royal Children's hospital after his second surgery, January 2009 (5 months old)

Sam in Mt Isa pretending to ride the bobcat in Mt Isa, Christmas 2012 (aged 4).

Living Hope

HOPE: The assurance that our future is secure, that God is God and come what may, He loves us in a life altering way.

So for the Watson family living in hope looks like this at the moment.

Don is back at work and enjoying meeting some newcomers.  He comes home for lunch every day and we have been making the most of our time together.  Truly I love this man more than I ever have. 

Jack has recommenced school and is settling in well to Year One.  He regularly brings home frogs in his pocket that he rescues from the toilets and drains.  He also now has a Broad Banded Sand Swimmer (Lizard) that he looks after.  Between that and the ant farm, we are constantly on the lookout for moths to feed them.  Most nights at around 11pm Don can be found in his boxer shorts swatting and catching moths on our back deck.

Sam is beginning Kindy tomorrow and will be attending three full days a week.  He met his teacher on Monday and we have been busy preparing all that he needs to take with him. He has been counting down the sleeps until he starts.  He is at the pinnacle of happiness at the moment. Healthwise he is very well. He walks through the shops with me, plays on the playground at Jack's school in the morning and still has a rest at lunch to see him through. 

I have organised a morning tea for Congenital Heat Disease Awareness on the 20th of February and have commenced another Avon campaign before we go away.  I am looking forward to using the time while Sam is at Kindy to organise our home more and organise my heart and head also.

The days here in Longreach have mellowed to not quite reach 40C, and the mornings now have the freshness that has so long been denied. With that reprieve from the stifling heat has come a renewed sense of God's presence, vitality and our love for one another. Surely this was God's plan in postponing Sam's surgery.  I look forward in anticipation for more of His blessings, as we walk this road one day at a time. 

18 Days to Go

Today Sam and I spent more time talking about his upcoming catheter and surgery.  He wakes up every morning and ask me, 'Is today my test?' and then follows with questions like:

 'Will Dr Gooi be there?'

  'Can I watch TV there?'

 'Are we going on the plane now?'

 'Can we bring the ant farm?'

'Will we go to the dinosaur museum?'

'Do I get to lie on the white bed,

 with the white pillow, that has paper on it?'

He is very impatient about wanting it all over so he can go to Kindy.

In an effort to show him that we are not just going to a check up, we looked at some photos today of another little boy who is going through what we must in a few short weeks.  His name is Jason and you can follow his journey here.  He is younger than Sam, but as I follow their story and pray with them, it is also helping us prepare for what is to come. So we looked through some of the photos together of this darling little boy going in for his catheter. 

I showed Sam a photo of the inside of the cath lab with the doctors and nurses preparing the equipment.  We looked at a photo of them putting the little boy to sleep with the breathing mask and how the doctors and nurses were all dressed.  In this photo the little boys mum was also dressed in scrubs and stayed with him while he drifted off to sleep.  We saw that the little boy had a sats probe on his finger and a blood pressure cuff on his arm.  We talked about how he will also have a drip in his arm. He asked many questions:

'Is the Mum a doctor, why is she dressed like that?'

'Will it hurt?'

'That little boy is a baby, and I'm a big boy.

Will I have to wear a nappy?'

 

'Will you be there with me?'

And then as quickly as he began he ended with:

'Can I have a chocolate biscuit now?'

I spoke with Jack's teacher today about the next few months and what it may mean for Jack as well. There is only 18 more days until Sam and I leave for Brisbane.  We are making the most of enjoying our home and family and praying that we all remain well (there is a very nasty gastro bug going around town). 

Jack preparing his lizard enclosure.

Sam chilling out indoors while it's 40C outside.

Sometimes I long for a life that is less complicated and less challenging.  And then I look at these faces and realize that without the life we have, none of us would be who we are. I just have to trust that God has it all in hand and let my heart be filled with hope for the future, faith in God and love that knows no bounds.

A Measure of Excitment

You would think I would be quite downcast about what is coming in the next month, but today the opposite has been true.  Today we have been flooded with a barrage of blessings, all designed and sent as divine gifts that only God could know would bring great joy to my heart.

The first of those gifts was collecting the enrollments for Sam's Kindergarten at the Longreach Childcare centre and them being so supportive in Sam starting whenever he is ready (mid year or before). He is excited about Kindy and knows he can begin as soon as he is well recovered from his operation.  This gives him a goal to look forward to, and gives me a glimpse of the future he is going to enjoy.

Them today we talked a little more about the surgery to come and even discussed the fact that they are going to make his chest smooth and remove the lump that has formed on the sternum where the bone has over healed.  He was distressed at this at first and then got excited because he and Jack will have the same chest. It was really precious how the talked about it and compared chests. 

Don arrived home from work to tell me that his employers and our friends Ben and Anna have offered to let us stay at a house while we are in Brisbane.  Apparently it is a beautiful home on the river which we are able to stay and have family to stay also, as it will be vacant the whole time we are there.  It is apparently not too far from the hospital. This is such a tremendous offer of generosity and we are so humbled and blessed.  This would save us a considerable amount of money and give us house to call home and relax when away from hospital. Isn't God just amazing in his kindness.

And the most recent blessing for today was that Sam has outgrown a pair of shorts that were made for him only three months ago! Sam has put on very little weight for so long.  In fact one kilogram a year is not rare.  In the last three months Sam has grown in weight by almost a kilogram and no longer fits his home made boxer shorts. Yeeeha! 

These were the treasures that I found strewn upon the walk of life today and I can tell you I feel richer than I have for some time.  Little by little, one step at a time. Trusting and looking to God for all he has for us in the good times and the bad.  Just like little children.

...“Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children. (Mark 10:14)

I Do Not Recommend Running From God

It's a new year, a time of new things. Over the last week God has been speaking to me about how he is doing a new thing in our family.  How we are to hold the past lightly and look to the future, for there is good things to come.  I have a renewed hope in God. For the last few weeks I have been running from Him.  You would think I would learn by now.  I buried myself in reading copious amounts of romance novels, cleaning the house and filling every spare minute of solitude with some form of entertainment to keep my mind busy and my heart disengaged.  Have you ever done that?  It is exhausting! Still Jesus pursued me, waiting quietly by my side, beckoning me to spend some time chatting with him; the ever so patient but incredibly relentless God that He is.

So I gave up running, weary from His pursuit and failing in my own strength to overcome that which threatens to take hold of my heart.  There is actually quite a list of contenders for my heart-fear, insecurity and doubt are all making a play for me, but thankfully I have already given my heart over to God.  And He is relentless in love, refusing to budge at all no matter how much I disregard Him.

So in the stillness of the moment, in the dark of the night while the house sleeps I pray.  I start with words because it's easier that way sometimes. 

'You know I love you God, but I am pretty unsure of you right now.  How can you make us do this whole surgery things again?  You need to step up because I am just not getting this whole plan you have laid out before us.  I am trying to trust you, but it is hard and I know that I can' t do it alone.  I've been trying for a few weeks now and I am a exhausted...Sam is......................Jack needs..............................Don is.....................................I am................................' and on and on I went.

Then His presence rested heavy upon my heart and I feel the lump rise in my throat, the tears sting the backs of my eyes and overflow down my cheeks. Then I have no words, just sobbing and soft groans and the words from heaven that were given to me to pray when I have none.

Time passes and the ache subsides to be replaced by a warmth that spreads from the centre of my belly like living water, washing with it's tide any of the remnants of hurt.  I feel God's peace rest upon me again and I wonder why I ran to begin with.  Why would I run from the only arms that know how to comfort my soul? 

You run because you are still human and that is OK.  There is nowhere you will run, that I will not follow.  But now that I have you back in my arms, let me lead you.  Let me show you the hidden path, that was blinded by fear and doubt. I ask you to do much that is no comfortable, much which causes you pain but there is so much you do not see.  Do you know how you make me smile, to see you endure such things for my glory, so that others may see my love reflected in your lives? Do not fear what is to come, I have it all in hand.  With great trial comes greater blessings. I love you.

In forty days Sam will be heading to the Mater Hospital for his catheter.  Plane tickets have been booked for he and I. A nights accommodation has been booked at Ronald McDonald House for the first night, before he is admitted.  It looks like we are going to have to catch a taxi from the airport with our luggage or the air train, which will be an out of pocket expense.  I am leaving behind Jack who is just beginning grade 1and my husband, who will be working.  He has to, we cannot afford to have us both there.  Rent needs to be paid, bills do not stop coming.  He also has no holidays up his sleeve as he only recently commenced this new job.  For the week that Sam is in hospital for his catheter I will sleep by his bed. And then we will hear the results from the catheter that tell us whether Sam is a candidate for the Fontan operation, the last stage of his three stage open heart operations.  Then a date will be set and we will wait close by until that time.  All the while being separated from our family.  Then Sam will be readmitted and Don and Jack will join us, because frankly we can't go through it without being together as a family (hang the fact that we cannot not afford it and my go into significant debt).  Sam will endure the surgery.  Don and Jack will head home when Sam is healing at a miraculously rapid rate, and Sam and I will follow in time ( I am hoping before Easter). And then we will come home and be a family again and enjoy all of the crazy fun things we like to do.  And then I will feel like this operation that has had us on a leash for the last four years is long gone, and it will no longer dominate our future. 

As most of you know, this blog is my head space.  A place where I can commit what is happening in my heart and head, to type and prayer.  The blog is healing for me, a place where I can share with others what is going on with us, without being a melting pot of tears explaining it all verbally. There have been a couple of times recently when I have considered closing the blog down, but I know now is not the time.  So it looks like you may have to put up with my presence in cyberspace a little longer. xx Nicole

A Warm Christmas

Christmas was warm in more ways than one this year.

Warmth came from visiting our family in Mount Isa.  My heart was warmed to see them after so many years and when we met two of their beautiful children whom we had never met.  And to laugh and chat and have fun together. 

Warmth came from the intense heat of the weather and we sought relief and fun in many ways including water sliding, the river and air conditioning. 

We found warmth in smiles, cuddles and new found relationships with cousins who are now friends after so many years of simply speaking on the phone.  The boys now feel linked to their cousins in  new and special way.

Warmth came from watching my children enjoy the Christmas season hearts filled with excitement, giving and receiving gifts and learning new things. Making memories to keep close forever. These memories will serve us well and we shall pack them into our luggage when Sam has to go to hospital in February.

Maybe that is part of why Christmas was such a special time for me. I wanted to leave all of what is going to happen in this new year with Sam's surgery behind and enjoy our time together.  Each moment is precious, the smiles, the hugs, the squeals of excitement, because I do not and cannot hold time too tightly in my fist.  Not one of us know how much time we have here and so our family has learned not to take any of those moments for granted.  This is amplified due to Sam's upcoming surgery. People tell me not to worry, and they are right.  They tell me 'Sam is strong' and he will do great, and he may.  But in essence we have no control over these things.  The only things that is sure to me and never changes is God.  And so I cling to Him and His promises.  And I thank God for each of you, that He has given me each of you to love, encourage ad pray.

So I hope you had an exceptionally warm Christmas, so that when cold, grey days some, the light of that warmth will glow strong in your heart.

I Am His and He Is Mine

Mush alert:  Do not read this if you are not into love filled sentiment.

I hear many people tell me that there are few good men left in the world.  I beg to differ, because I am married to the best of them. For twelve years today I have been blessed to be married to my husband and the more years we spend together the more I come to realise that what we have is a precious gift which must be cherished.

Before we were married, 1999. (19 years old, we were married at 20)

When I reflect on our twelve years, it astounds me to see where we have been and it gives me much hope for the future.  Here are the top twelve things I love about my husband:

When he looks at me in 'that' way, my heart still skips a beat.

When he smiles, you simply must join in and when he laughs you know that it is him (no one else has that laugh).

He makes me coffee every morning and delivers it with love.

He can massage like a professional. (But only me of course)

He is never afraid to show that he loves in in private or public.

He is the best father and works hard to keep our family.

He loves God and this just makes me love him more.

When his arms are wrapped around me, I know everything is just going to be OK.

He knows how to have fun and how to relax, and helps me to do both.

He loves to read and we can sit together and do so for hours on end.

He will offer to do something to help me, even when he has no idea how to do it.

He tells me he loves me many times a day.

I love you Don, may the next 12 years be filled and overflowing with what we already have and more. xx

 

32 years old and more in love than the day we married. 

Put Your Words Away

Some days my skin is thicker than some.  Other days the barbed words hurt more than I should allow. I have a mother's heart after all.  The word darts are unintentional, offered in passing by often with a smile. 

This morning at swimming the bullet words came again from a lovely mother with her own beautiful healthy children. 

'Your legs are blue aren't they little guy' and then, 'He runs funny, doesn't he?'

She then looks to me like I should be getting Sam out of the water in the 37C heat, because he is 'obviously' cold.

I grin and then continue to talk to Sam.  She goes on her way.  Some days the barbs sink deeper than they should. 

So in response to that dear lady and the countless others that mean well, this is what I would like to say in hind sight.

'You miss the point entirely.  Sam RUNS, he SWIMS, he PLAYS, and can CONVERSE better than many kids his age.  Sam can LAUGH like no-one business and when you are down or hurt he is COMPASSIONATE and will PRAY for you.  Before he was born I was told he would do none of these things.

You look and see his blue legs, and lips and make a judgement based on what you know, so I will forgive you and I will smile and trust that in the future you will guard your lips, as the words that tumble from them without thought have the intention to not only hurt others but make you look like an idiot.'

 

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