Just wanted to let everyone know the answers to some of the questions regarding Sam's trip to hospital:
Gran Watson arrives in Longreach on Friday the 15th March
Sam has his last dose of Warfarin on Saturday the 16th March.
Sam and I leave Longreach on a late afternoon flight on 17th March. Don and Jack remain in Longreach and continue to attend work and school. Gran Watson will be helping love and look after my family in my absence, God love her.
Sam is admitted to The Mater Children's Hospital on Monday the 18th of March and put on a Heparin drip.
Wednesday the 20th of March is when Sam has the diagnostic cardiac catheter. This involves Sam being anaesthetised, and having a thin flexible tube threaded up through an artery in his groin to measure the pressures in his heart. In addition to this he may also have a stent put in his PA (Pulmonary Artery) to prepare and provide the best possible outcome for the Fontan Surgery. Most of all this catheter tells us whether Sam is in fact a candidate for the Fontan. you can read more about the Catheter here.
All going well, Sam's warfarin will be re-started following this procedure and he will be released the next day.
On Friday 22nd March is is likely that Sam's cardiologist will review Sam's catheter results and then give us the news. If Sam is a candidate for the Fontan we will then be given a date for surgery over the coming days. If not then it means that nothing can be done for Sam's heart for now and we will have to wait until Sam's heart goes into failure before he is placed on a transplant waiting list.
As you can see we don't know when Sam's surgery will be. We believe that a way will be made for him, because we believe the promises that God has given us. However we don't know what that way looks like or how it will all come to be.
When Sam does in fact have his Fontan operation, Don and Jack will be driving down to Brisbane to be there with us.
In between when Sam has the catheter and the Fontan surgery, he and I will be staying on the Sunshine Coast with Granny and Grandad Bedford. If the time is much more than a few weeks, I will likely return home with Sam and make the trip to Brisbane again at a later date. We are praying for Sam's best interests and our own sanity that the surgery will go ahead while we are still on the coast.
I hope that this all makes sense. Please ask any questions you may have and I am happy to answer them. Thank you for your love.
Monday, March 4, 2013
Two More Weeks
This time in two weeks will see Sam admitted to the Mater hospital for his diagnostic cardiac catheter. During that time he may also need a stent in his PA (pulmonary artery). From there his results will be reviewed to make sure he is a candidate for the Fontan surgery that he needs. Lot's to do, think about and pray about before then. Yesterday at church we prayed for another couple who are leaving our church to move town. After we did, Sam asked our Pastor if they could pray for him too. So everyone did. They put their hands on his head and on his shoulders and prayed for him. All the while he beamed and smiled at them giggling every now and then for good measure. He is just so full of joy our little boy.
I just want to wrap him up in my arms and keep him like that forever. But I know I can't and so I just have to trust that God knows what He's doing, no matter how much I want to tell him otherwise.
Sunday, March 3, 2013
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.
Thursday, February 28, 2013
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.
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.
Sunday, February 24, 2013
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.
Wednesday, February 13, 2013
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).
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.
Tuesday, February 5, 2013
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.
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.
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