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 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.

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.

We've Made It

Well what a long day it has been.

Today we had a contemplative morning, all of us were a little quiet, each trying to deal with a day that was always going to suck (best word I could think of tonight).

We spent a wonderful morning at church with our church family and Gran Watson too.  They lavished us with love and prayers and encouragement and care.  They truly are an exceptional bunch of people.

Gran, Jack and Sam at Longreach Airport.

We headed out to the airport in the late afternoon, not quite ready to be separated.  Who could ever be ready right?  I was leaving half of my heart behind and half of Don's heart was coming with us. We  both knew the separation would be tough.  The flight was 40 minutes late and we had a very rough approach and landing at Brisbane airport.  It was all a bit scary ( I have a pilot for a husband remember).  A fierce crosswind, some bad decisions and a very fast landing were enacted leaving the tyres a bit thread bare I would imagine.

Sam was really tired on arrival and so we lugged our suitcases and other bags and arrived at Ronald McDonald House just before 8pm.  We did not have dinner, Sam was too tired, so he had choc chip biscuits in his bed for dinner and I will have breakfast tomorrow.  Praise God that we did have snacks on the plane. 

Sam is laying beside me now trying to go to sleep, while we listen the unfamiliar noises and the traffic outside.  We are thankful for a bed and a time to rest now.

Tomorrow is a new day and thank God his mercy and joy are new every day is too.

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.

All About the Fontan

The Fontan surgery that Sam needs is complicated and hard to explain in any detail, so I have found the information for you so you may read what it entails.

Fontan Operation

This involves connecting the veins from the main circulation (SVC & IVC) directly to the pulmonary arteries. Blue blood is thus directed into the lungs rather than to the left atrium. A patch is placed to prevent blood passing from the RA to the LA - though sometimes a small hole (a 'Fenestration') is deliberately left.

Both this description of surgery and the graphics below are from the RCH website.

This is what Sam's Heart looked like at birth before his first surgery in comparison to a normal heart:

This is what Sam's Heart looks like now (after his second surgery)

This is what Sam's heart will be like post Fontan:

To read about the procedures involved in the Fontan completion please read here for a highly details and informative explanation.

For a medical outlook on what HLHS means for Sam both now and in the years to come, I found this description most useful and easy to understand:

As he grows: your child’s long-term outlook

Babies with HLHS will need three surgeries in their first few years of life; and children will need follow-up care throughout their lives to ensure that their hearts continue to function adequately. They are never entirely cured of their cardiac defect, and will probably need to take heart medications.
The most positive outcome is that a child can undergo these surgeries and not have any symptoms going forward. On the other hand, there are children whose hearts struggle with their single ventricle.
Children’s cardiologists will follow your child’s recovery and progress, and will provide further treatment, if needed. There is a risk of complications, including arrhythmias, heart failure and blood clots. And the potential does exist for needing a heart transplant in early or mid-adulthood.
Thanks to sophisticated diagnoses and treatment innovations, babies with HLHS who would not have survived a mere 20 years ago now have a good chance for a full life. And the medical science on HLHS and other congenital heart defects continues to evolve and improve. (Source)

All of this information is good to have.  It helps me to understand what Sam needs to go through and how I can help him and advocate on his behalf.  But it is the promise which God gave me that I hold most dear.  Because there are so many variables in medicine, nothing is certain, each case is different, each child is different.  And I know that God's promise for Sam to have life in abundance is unchanging and rock solid.

 Information is important, faith is essential.

Doctors Update

Sam's fevers have gone.

He is brighter this afternoon.

And so am I after a little nap.

His GP has diagnosed that in addition to his school sore he also has a throat infection.  Praise God it's not something worse!

Sam will stay on low dose antibiotics up until he has his cardiac catheter.

I have called the hospital to let them know and they are going to get back to me early next week to make sure that plan is OK. 

I pray that is it.

There is nothing else I can do.

It is all in God's hands thankfully.

Outside I am calm, inside I feel like I am running a marathon.

Outside I am quiet and thoughtful, inside I am imploding.

You know that feeling of when you close your eyes lay down and it feels like the house is shaking.

Time to be still and know that He is God.

Carrying my Chains

There are so many chains that hold us back and bind us up.  Everyone's chains are different at different times of their lives, in an effort to keep them from being truly free and unhindered by what surrounds them.  Here are some of the chains that bind me at times, maybe you have also carried their weight.

Anxiety

FEAR

Rebellion

CONFUSION

Melancholy

The chains are constricting, life sucking.  They hold you back from leaping into life and love.  They make you nervous and unsure of yourself and who you really are.  They are not godly and if you truly want to live life the way God intended; they have to go.  Identifying the chains is easy it's what comes next that is so hard....

When you know Jesus, you simply ask him to break the chains that bind you.  He literally sets us free by breaking the chains that bind us, loosening the hold they have over our lives.  Just getting to that point can be hard, because if you ask for help you are weak right?  Need a crutch to get through life?  I have learned to get over that.  I ask for help easily, because I know that trying to break those chains in my own strength will only get me more tangled and bound.

However...

Even after we are set free from our chains we can still choose to carry them around.  You heard me. What's binding us is broken and we have a choice to be free, but we choose to carry around the chain.  It drags heavy and weighs us down but we hold onto it because in an odd and disconcerting way, it has become comfortable and famliar to us to be fearful, to rebel, to be confused, to be a bit down.  So instead of casting that chain off completely and diving back into life, we hang back with what we know, giving that chain another opportunity to draw tight once again. 

I know.

I've been there.

I'm still doing it,

but that doesn't make it right.

You see Jesus makes a way, but we still have the choice to live in bondage, or in the fullness of life.

So today I have asked God to break the chains once again and I am casting those chains off, because they are holding me back, stopping me from doing things I love. Holding me back from reaching my goals and restricting me from loving those around me like I should.

I don't have time for chains with what we have to face in the next few months.  I am gong to need every bit or strength I have and then some. Goodbye chains, hello freedom.

I Don't Want To Be A Heart Kid

It was Sam's last day at Kindy today before we head to Brisbane for his catheter and impending surgery.  He has finished two weeks early so that any bugs he picks up have a chance to leave before hospital.  In the month that he has attended Kindy he has had gastro and a slight head cold. He had a very fun last day and his teachers made him a card with photos that he is going to take to the hospital with him, to remind him that will go back to Kindy once it is all over.

So bravely today he waved goodbye to his class, telling them that he was going to have his test and he would be back one day soon and he would have a flat chest like his brother Jack (we have only told him this once and he is really stuck on it).  At home this afternoon he told me that he doesn't want to be a heart kid, just a normal kid.  What do you say to that?  I can try to encourage him that heart kids are wonderful, but both of us know that it would be better if his heart was normal.  So I didn't lie, just gave him a smile and a hug, and told him, 'I know mate'. I can't tell you how many other answers flashed through my mind before I settled on that one.  It is what it is, nothing more.

Tomorrow we drive the hour or so to Barcaldine for Sam to see the public dentist to have a pre-operative dental check up. They only visit Longreach once every six weeks or so.  Jack is having the day off from school and we are making a day trip of it. 

Gran Watson is arriving in two weeks to be here with Don and Jack when Sam and I fly out.  It all seems a little too real now. One day at a time...one foot in front of the other.

How do I feel? Anxious at times, due to what I know is coming, and not knowing how it is all going to pan out.  Relieved because the wait is almost over.  Focused to the point where it sits continually in the back of my mind, while the rest of me does the day to day.  Humble to know that I don't have any control and just have to trust that God has got it all covered. And in the meantime I try to gather enthusiasm to complete this Avon campaign, celebrate Don's birthday and try to conversate with others when my mind has trouble keeping up with my mouth. So forgive me if I seem vague at times.  It's just me trying to deal with life as I know it.

Imagine for a moment...

Imagine for a moment...that your child has a disease that cannot be healed or restored by human hands, yet. 

Imagine for a moment...watching your child a little more carefully than you usually would, being careful to protect them from further harm, because they do not deserve any more pain. But in the same breath forcing yourself to let them live freely and not be inhibited by what they cannot do, instead empowered by what they can do.

Imagine for a moment...giving away any dreams you had for your own career or life.  Putting aside your own ambitions and having your path redirected to a place that you wouldn't wish on any other human being.  The place where you have to watch your child endure that which you would gladly carry yourself in their stead.

Imagine for a moment...having the reality of pondering on whether your child will become a young man or woman. As many of their young friends do not have the opportunity and lose the battle this side of heaven.

Then

Imagine for a moment...that God truly is God and is real beyond your wildest imaginings.

Imagine for a moment...that God loves you and gave you promise for your son.  The promise of a future that is steadfast and true. A promise in complete polar opposite of your worst fears.

Imagine for a moment...that you find that the life that has been mapped out for you, though painful, is more fulfilling and life changing than what you ever could have planned.


The place you have just imagined is where I live. 

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. 

Ahhhhhhh! 18 days becomes 46.

This afternoon we received the call from the Mater Hospital to tell us that Sam's catheter and surgery have been postponed for a month, until the 20th March.  How do I feel about that?  In all honesty a little bit frustrated, sick, weary and guilty. 

Frustrated because it means I have told the kids way too early. Because we have to re-organise everything-flights accommodation, family and people helping us out.

Sick and weary because we have to wait yet another month for some finality, for this long and drawn out time to come to an end. Of having the anxiety plague me and because I feel like I've forgotten how to have fun and just relax.

Guilty for being so selfish, to just want it all over and done with.  How horrible is it that I want Sam to endure the pain of surgery and upset, just so that we can go on with some sort or 'normal' life?  (Inser hysterical laugh here)he just wants to go to Kindy and  have fun.  Guilty because I see others around us going through much worse and I feel like I have no reason to complain.

If I was to let how I feel consume me, I would be just that-consumed. So instead I repeat:

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need. (Mat 6:33)

I have to believe it.  I have to believe Him or else I won't make it.  It's simple really it's God's promises to us, that stop me from drinking red wine until I am oblivious. It's God's promises that keep me from eating the IGA out of dark chocolate and it is God's promises that cause me to smile when I should be crying and curled up in a corner. That is all for now.

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)