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.

Coffee Aint All You Need In The Mornings

I am thankful for this little space where I can write and share.  I am thankful that I can be honest and not make out everything is alright when it's not. Some people tell me to just have faith, it will all work out OK.  But you see faith is not that neat and uncomplicated.  Faith does not rest back lounging and wait.  Faith is an action word, that must be lived out day by day, and in every situation, the good, the bad and the ugly. My weakness is not a result of lack of faith, it is the result of a long and weary battle, and every soldier needs a break now and then. When we stand together in prayer we are stronger and can stand longer. We were never designed to stand alone, most of all we were not made to stand without God.

One way that God has always spoken to me is through music.  It is not always 'Christian' music.  The words from his lips to my heart will always find their way, even through country, rock and pop. So I know when I am struggling I am can listen to music and at some point I will hear words that were meant especially for me, right where I am at.  Last night a special new friend of mine brought me a gift, a CD God had asked her to give me.  She had wanted to wait and give a me a new copy, but in her waiting God asked her to give me her copy, now.  She did.

So this morning while I make coffee I heard with my ears:

I know Who goes before me
I know Who stands behind

And I hear with my heart:

'I am here my love.  Though the nights are rough and the enemy relentless, I am the one who created relentless love, so I am the One who prevails. I walk before you into the darkness to bring light to your path, and I stand behind you to protect and embrace you.' 

And as I sip my coffee and look out of the window at the new day, I hear with my ears:

The God of angel armies
Is always on my side.

And I hear with my heart:

'Peace, be still.'  His words are resolute and calm.

As I prepare the boys their cornflakes, I hear with my ears:

The One who reigns forever
He is a Friend of mine.

And I hear with my heart:

'I've got this honey, you look after those little boys and enjoy your day.' And in my minds eye I see Jesus grin at me, the smile of a best friend, one who will never let me down.  

You might say, 'It's all in your head'.  But I say to you all 'it's all in my heart' ,and I heard none of it before I knew Jesus.

So I know this time will pass and God's plan will not thwarted in our lives. We will get through this time of uncertainty. And through the mess of it all, some amazing picture will emerge that was hidden by the creation process.  I don't know how and the battle is long and rough.  Thank God that mercy is new every day.

If you want to hear the song that spoke to my heart over breakfast today.  It is by Chris Tomlin.  You can listen to it here.