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.

Anxiety Is Not My Friend

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

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

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

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

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

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

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

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