Thursday, September 12, 2013

Dreams Come True

For the longest time I have not dared to dream. Not dared to let my mind wander to a place in the future, nor let my heart follow it there.

Congenital Heart Disease does that to a family.

Most families have dreams for their kids; to see them grow up into young men and women, fall in love, get married and have a family of their own. My dreams have not lingered there, They have visited occasionally. Kind of like popping your head around the corner of a door and then retreating before anyone notices. That has been the extent of my dreams for our families long term future. Because as a heart Mum I have learned to live in the moment, relishing each day. Not taking anything for granted, making big deals out of every milestone because they are so much more precious to me, knowing that God enabled us to reach them. In essence we live a life of gratitude, not making plans anymore than about a week in advance because so often those plans fall in a heap.

Being on a church roster is scary for me, working is scary for me, committing to being somewhere weekly is scary to me. Because so often I have to let others down to be with my family when they need me. And often they have due to illness.

But lately I have been stretching my tired wings. Daring to venture into greater commitments  with work, church and friends. I have been letting myself dream a little more about our marriage and  future, about my boy's futures and speaking words of great promise over all of us. Through God enabling I have begun to see through the haze of CHD and see increasing glimpses of God's promise of life in abundance for our family.

For so long I have been holding these precious dreams in my hand and protecting them like a costly jewel.

Now I see they are alive and ready to take flight, like a dove being released to find it's way home; God's promises to not return to Him unfulfilled.

Picture Source

Tuesday, September 3, 2013

It Hurts

Sam has always had sensitive skin. His hearing has always been more sensitive and his emotions run deep, both good and bad. Since recommencing Kindy I have watched him grown in confidence, regaining some of what was lost during the last surgery in March. It is wonderful to watch him bloom, yet hand in hand with the bloom comes fragility and vulnerability.

He was accidentally pushed over at Kindy yesterday grazing both of his knees. He felt it deeply and the whole Kindy knew about it. They called me, not concerned about his knees but his reaction to the accident. You see his reaction to pain and fear is so out of character for Sam. The once happy little chappy with the big vocabulary and infectious giggle, just screams and cries and will not be consoled. He will not let anyone touch his wounds or try to distract him so they can. So they called me, on the way home from getting groceries and I had to make a choice. To go and comfort him...or to leave him in their care. Every motherly part of me screamed to turn the car around go to him. The other part of me, wants him to grow and realise that he can do it on his own, and that he needs to. So pushing down the caring part, I resolved to let them deal with it and drove in the opposite direction. Ten minutes later I called and he had settled somewhat, though now they had somehow convinced Sam to apply his own band aids, three of them. Oh hell! Yes, that's right, hell. It will be when they need to come off.

When I arrived to collect him in the afternoon he was still waking from a sleep. He was unable to stand, due to the stiffness of the grazes and bruising and I had to carry him to the car. They told me that he had not been himself for the rest of the day. That he had seemed tired and staring off into space. They do no understand how trauma saps his energy. For the last 24 hours he has been walking over like a hunched old Grandpa. Part of me worries that he has broken something but he would not be able to walk at all then right?

This morning he needed to take off the band aids. An hour later through much wailing, negotiation and persistence he removed two and I the other. It was not the best start to the day and Jack was almost late for school. And now he sleeps while I write this. Because of the exertion and drama over the last 24 hours we are both exhausted. Him from struggling to deal with it all and me from playing good cop, bad cop, trying to encourage him into moving, without me having to carry him.

Most other kids have grazed knees occasionally. It hurts, and they react but not in this way. I struggle with dealing with it all because besides my husband there are few who understand the drama, physical and psychological implications of it all.

My heart is aching today. I think I need a holiday.

Thursday, August 8, 2013

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
Psalm 23

Saturday, June 29, 2013

Sam's Cardiac Review-Three Months Post Fontan

Yesterday we travelled to the Mater Hospital in Brisbane for Sam's cardiac review. We were relatively relaxed in the lead up, as Sam has been so well and has looked so good post surgery. Sam on the other hand, was not so relaxed about his check up anymore after his surgery in March. Hospitals are all too fresh in his mind.
The first part of the review was gong well until they had to the ECG and that is when he just lost the plot. There was no way anyone was putting anything sticky on him, as anything that is sticky must come off.  The ECG stickers have a really stretchy kind of adhesive on them and they are uncomfortable to take off but definitely not painful. However Sam's memories of tapes, tegaderm and dressings after surgery have made him very fearful, and his anxiety goes through the roof.  He will NOT listen to any reason when he is in that place, and that is where he got to yesterday. If he is upset like this and anyone tries to negotiate or bribe or suggest anything he will not listen at all.
So after that great upset we then had to try and get a good blood pressure reading and oxygen saturation. After some time, they were all good, his sats still sitting on 98%.
His clinical check up with Dr Gooi went smoothly and then on to the echo. Sam was very good for the echo and stayed very still for a long time as they also had to check his lungs for fluid in addition to all of his heart.
I became very concerned when the sonographer went very quiet and spent quite some time searching for something.  When he excused himself to go and get Alex (Sam's cardiologist) I prayed over and over that all would be well. When they returned together I found out that the sonographer was unable to locate Sam's pulmonary arteries, either of them! Of course I know Sam has pulmonary arteries and they are functioning well otherwise he would not look so good. Talk about knowing how to completely freak out a heart mum! They should be schooled to never go silent and then leave the room without offering explanation.
The result of the echo was that Sam's lungs are completely clear, meaning that he has now ceased to need Lasix. Wooohooo!
His heart function is great. The right ventricle is pumping nicely, the valve still only has minimal regurgitation (no change), and his aortic arch is in great shape. The pulmonary arteries are of good size and Aspirin and Enalapril are the only medications he will need to remain on. Our next review will be in 6 months and soon after that we should go to only having one a year appointments. How exciting will that be!
We have brought home some of the ECG sticker to play with at home and try and desensitise over time his aversion to that testing. We are also going to try and do some local occupational therapy to help with his fear and anxiety in regard to needles, blood tests and ECG.
I thank God for Sam's continued good health and look forward to the next days, months, and years that we believe will be the best of God's gifts yet.
Sam was happy to go back to the hospital as long as we didn't have to stay and we didn't have to visit the ward.

He was trying so hard to be brave in this photo. His croc was there to help protect him. Sam's awareness level and anxiety is very high after his surgery.

The echo took a long time and in the end he nearly fell asleep, but refused when I told him he could. He was keeping both eyes open.

Monday, June 24, 2013

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.

Sunday, June 9, 2013

The Game Changer

Sam turned to me, 'I fish (wish) I could go play tiggy with those kids.'
He stared longingly at Jack running full speed with the other year one kids before school. Like a bunch of wild lorikeets the kids were tearing down the wooden ramps hanging from the bars, sprinting across the school yard in the icy morning air.

'I know honey, but they are really rough and a bit too fast for you. Maybe you can play with Jack at home later.' My heart ached for him, because of the desire he had to play. I worried for his safety. Inside I agonised about him being hurt or pushed over, treated unfairly because he can not run so fast. Kids can be ruthless when being competitive. We are new to the school the kids don't know Sam, don't know about his heart. I began to think forward to him starting Prep school next year and how he would go with all of the other kids. As my heart felt his sorrow, I suddenly realised he no longer stood beside me.
Sam was sprinting (in his own special way) down the ramp to join in the fray and I stood rooted to the spot forcing myself not to call out. He had made the decision and every part of the Mummy in me wanted to stop him. In the raucous din  I heard Holy Spirit whisper 'No, let him go'.

In the next few minutes I witnessed the most amazing transformation. The whole group of 10 or more year ones welcomed him, and let him chase them.  Then they completely changed their game so that Sam could join in. They would draw close to him and then dart away as he roared at them like a T-Rex.  And I watched him run and laugh and never stop until the bell rang for class to start. Instead of being the outsider, the one struggling to keep up, he became the centre of their game. His own little personality and his determination to play changed the game for good.

We need to do that to you know. Though we are afraid, we need to run on in reaching for what God has planned out for us. And part of that is never being the same again, seeing the game changed because we dared to trust for bigger things.

Always learning, always growing each day in every way.

Saturday, May 11, 2013

Our Last Week in Longreach

Well, the week is upon us, once again. This Thursday we leave for our new home in Highfields Toowoomba. The truck is coming on Tuesday to pack us up, with all of our household goods leaving on Wednesday.  Our family is going to camp in our house, with our sleeping bags and esky. We are saying goodbyes, enjoying our last times with our new friends, who we hope will continue to be old friends.  We are not done in Longreach, there is just so much to see and do in this place in the surrounding areas.  We know we will be back to visit someday in the future.

There is much to look forward to in the coming weeks. Our trip to Toowoomba will be via Bundaberg, and The Sunshine Coast, to visit with both of our families. Don will continue on to Toowoomba and leave the rest of us at the coast for a few days. We move into our new home on the 24th May. Don will be staying in a motel in Toowoomba for the first week of work, provided by Boeing.  We truly are blessed by all of the help they have given us in relocating. We will be visiting the school with Jack on the 23rd and he will commence at Highfields State School on the 27th May. The local Avon Sales Manager is excited to have me moving to the area, and will recommence business once we settle in a little.

Sam is looking forward to going back to Kindy, as he has now had a good break after his surgery and is doing better than he ever has before. Both the boys have a cold at the moment, but I have noticed a marked difference in Sam's ability to fend off the sickness, and his recovery is now about the same time as Jack. Once Sam begins Kindy I will look at doing some teaching supply work once a week in the local area.

We are really looking forward to seeing old friends and new ones too.

When God spoke to us in Melbourne about bringing us back home and pouring out his blessing, we would never had imagined it would look like this. This last year we have waited and are just so thankful for all he has done.
Jack enjoyed celebrating his 7th birthday this week.

The lounge has been sold and camping in our house is fun....for now.
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