Photos of Caleb living life to the fullest

I promised these photos a while ago but here are the photos of Caleb living life after his frame came off and although he is now recovering from another surgery, these photos inspire me to see all he has faced and continues to conquer....

Running his race being cheered on by his number one fans!!



All smiles with Jam and me after the race!




Running his hardest for the cross country!

Day one of school without the frame and the coolest looking AFO!

Free and uninhibited exploring the rocks!!

What lies concealed and hidden.

The aroma hits me as I walk through the door. It floods back through my memories and I catch my breath. It isn’t a bad smell, it is the clean, disinfected smell of the hospital, but it strikes within me a flood of emotions that stir beneath the surface of my well tucked memories. We walk in and push floor 8 on the lift. The door to the ward lay before us as a welcome home mat to the familiar hallways. One year on we are back in for day surgery to remove a remaining screw. A screw that was meant to be removed with the other pieces of Calebs frame, but it lay beneath the surface concealed, hidden. It has slowly worked its way out of his bone, slowly making its presence known, pushing out until its presence begins to create discomfort, pain, risk. It is now more than visible and it needs to be addressed. It needs attention. It needs to come out.

We walk through the process of the day with the ease and familiarity of having done this too many times before. It is a routine of steps through admission, consultants, pre-op, anaesthetists, consulting with the surgeon, down to parent lounge, the phone call, recovery, back to the ward……the flow of the task at hand keeps us distracted, keeps us focused.

But every now and then in the midst of the minutes comes a memory, a picture, an emotion that takes me racing back to those unforgettable moments of our past. The chair in the pre- op ward sits as a memorial to the moments when I begged God to take this cup from us. The tiles on the wall of the corridor outside the theatre and recovery stand as plaques to the minutes where we paced up and down waiting for the door to open for us to be reunited with our boy. The smell of the prep room as the anaesthetic is delivered, raises fear within me as I see him stop breathing again. The simple things arouse within me the well hidden concealed thoughts and feelings that once again, like Calebs screw pushes to the surface. They rise within me and their presence creates discomfort, pain, risk. These feelings and memories need to be addressed. They need to come out.

But the day meanders on and those memories and feelings wash in and out. How do I truly let them out and will I ever let them go? They are a part of the past year that stand as monuments to our journey. They are the markers in our hearts that remind us of the pain that we have faced, endured and overcome. They are memories that led us to the place of remembrance.

Calebs leg is bandaged now. The screw has gone, the bone has been scraped and bruised, but the stiches now hold together the flesh that will forever bear the mark of its presence. Maybe our hearts will be like that too. Maybe as our Father stitches together our torn and battered heart, we too will feel a little scraped and bruised. For we too will forever bear the mark, the scar of the this journey.

I have come to understand something ...

I have come to understand something....
I have come to understand that our land of giants in really our promised land....

I have been reflecting on the story of how as a family we stood in our desert and looked toward our promised land and were TERRIFIED to walk into it.
To us the road ahead was full of giants.
I wonder if I had been sent into the promised land, whether I would have come back with the faith and trust of Caleb or whether I too would have shrunk back in fear?

I have to admit there were so many times when I wanted to run away!
I wanted to turn and hide in the comfort of the desert that we knew.
Although the desert was dry and empty, it was what we knew.

And yet we did walk into our land of giants. we walked step by step and at times felt that we were more in the land of defeat than the promised land.
We felt the battle of overcoming every giant that came against us.
We cried as we once again, awoke to battle another giant.
And then it happened....

We began to see the giants crumble,
We began to see the victory,
We began to see the milk and honey of this season.
We saw that in this land of giants, we found our promised land!!

I think that the steps that took us into our land of giants were the very steps that saw us walk closer and closer to the heart of our God.
It saw us walk totally and wholely dependant on our Heavenly Father.
It saw us live on the very Word of God
It saw us understand what it means to surrender all into the providing arms of God

We walked with fear and uncertainty into a land of giants and with each step learnt what it meant to walk with trust, courage and hope.

We dont expect our promised land to be a set of circumstances that sees us living in the very essence of comfort and ease, but we now understand that our promised land in indeed a state of relationship and understanding.
It is the deep intimacy that sees us walk every step and breath surrendered in trust to our Heavenly Father.
The promised land in the place where despite our giants all we know and live is the hope and joy that is found in being able to say "not my will but Yours be done" with a big fat smile on our faces.

Walking in strength and courage

Well, we are in it.... A season of strength and courage!!
Caleb is living life to the fullest at the moment. He has competed in the swimming carnival, competed in the cross country and is now doing AFL AUSkick. It is simply a miracle as he is supposed to still be wearing a AFO and not supposed to be in sports for another 6 months. He is thriving in being able to run (with a funny hop and skip and limp) and play in the yard with the kids. He truly has come back to us and we are seeing now the strength of character that has developed through this season.
He does still have several things to overcome and only next week we head into the hospital for testing to try and identify the casue of his constant hive reactions and he is still being closely monitored for his progress, but for now it is having victory over all the thigns that were predicted about him.

As for us, we are in process of establishing a Non for Profit organisation to provide support, equip and empower families of children with lower limb conditions. It will be called STEPS OF COURAGE (Calebs choice). I am so excited about seeing the way that God is directing the path of this process. So for now we are walking out our next steps and grateful for every day of strength and believing for whatever will come next!!

PHOTOS to come- I promise!!

Well this is a surprise

I was hoping that the next time I sat to tell you of what is new in Calebs life that it would be how great he was doing and how much he had improved.....and in some ways I can. The lastest xray shows that his bone is much stronger and the new growth has consolidated very well. He is back at school and managing to walk without an aid, 99% of the time.
However the last two weeks have thrown us a surprise as we have found ourselves battling a spontaneous staph infection. Without going into the details, this time 2 weeks ago we noticed a small sore open up on one of his scars and by the beginning of this week Caleb had developed approx 15 staph sores over his legs, arms and face. This in itself was enough, however after a few consultations with our ortho surgeon, we became increasingly concerned about a particular sore that indicated infection in the pin tract in the tibia. Caleb was started immediately on antibiotics, which unfortunately saw us in the frustrating progression of discovering he was allergic to 2 and had developed resistance to another. This all came to a head when we were admitted back to hospital on Wednesday afternoon. I will spare you the details and skip to the part where Caleb was diagnosed with a chronic auto immune disorder which explains the reaction his body has been showing to the medications and other environmental influences. We excaped surgery to debride the bone which was the road we were headed down when initially admitted and sent home with a strict AB regime and to monitor him closely.
As I sit here, he sits on the couch not looking much better, but showing small steps in the right direction. One of the big blessings is that Caleb has not been unwell in this process. As much as he is having intrusive symptoms, he is physically well and active.
We are back to the surgeon tomorrow to assess the progress and we are believing for an improvement that they are happy with.
It has been a shock to us this week to be back in this place, but we once again have felt such a tangible wave of love and strength from our Father and his family!! I have had my moments where I have felt the weight of this new discovery and the surpirse return to intervention, but then I have also drawn so much from the things that we have been taught through this entire season.
We have declared His goodness, faithfulness and grace over us, even when we have been disappointed and confused.
We have spoken out His word as our truth when all else seemed more real in that moment.
We have once again chosen to trust and surrender our thoughts and plans to His wisdom and sovereignty.
We have drawn close to the heart of our Father so that the confusion and pain has not clouded our perspective of this season.
We have declared his praise in our moments of brokeness.
We have clung to truth over the specialist opinion.
We have celebrated the simplicity of togetherness as a pure joy.
We have chosen to rise up,
We have chosen to not be defined or deterred
We have been carried by the arms that are so much stronger than our human strength could ever be.
We have been grateful for the community of prayers that has wafted over us.
We have been blessed, strengthen, carried, and HELD!!

Nothing will stop him.....

Scars and freedom

Tonight as I bent under the table at dinner, I was struck by a sweet, sweet picture- my boys legs dangling free and unhibited under the table. Today my boys angels leg was freed. The cast came off and although he now wears a heavy AFO (ankle foot orthotic) he can take it off when he is not weight bearing. If he stands he MUST wear it, but for some periods of time, he has freedom. As I cleaned his wounds this afternoon, it was such comfort to hold his little scarred leg, bruised and bloodied in my hands and stroke gently all the way down. His skin is fragile and worn and the leg bears the scars of his journey, but as I stroked I saw release, freedom, relief flood over his face. "Thank you mummy, that is just perfect" he said softly as he basked in the tenderness of my touch on his bare skin. His little leg has been stretched, grown and now altough fragile, it must carry his weight, continue to strengthen and keep walking out each day.

And so it is with our journey..... we are all left a little scarred, a little bruised and worn, but now we must continue the journey, we must get stronger, we must step out our next steps, however we DO NOT have to carry the weight. For our Father tenderly holds us and run his scarred hands over our scars and proclaims that it is perfect.

At the beginning of this journey, I could not have ever imagined, ever comprehended all that we would experience, endure or witness, but I could also not have comprehended how much we would grow, learn and change. In the process of this sacred season we have been refined, strengthened and we are not the same.

-We have learnt what is means to truly live on the WORD. We have had moments when no human comfort can be found excpet through physically CLINGING to the truth of the Word. Even when it does not feel like truth, we have learnt to choose to hold it until it IS truth and life for us.

-We have learnt to find utter safety and certainty not in our circumstances or in our expectations, but in the hope we have in our Saviour and King. We have learnt to not only be content in our circumstance but to 'count it all joy' in the midst of the most difficult moments.

-We have learnt that there are times when the name of Jesus is all that we can utter or whisper in the depths of our pain and that in that moment we are truly held.

-We have learnt to trust in the Spirits promptings in ours. We have learnt to trust the great Healer, great Creator for the wisdom to know how to take each step.

-We have learnt to be courageous and to fight for the things that we need.

-We have learnt that we are never defined by the opinions and advice of men but empowered and given victory and confidence in the provision and healing of our God in heaven.

- We have learnt just how powerful the body of Christ can be to minister the love and grace of Jesus.

- We have learnt that all things do work for the good of those who love him.

- We have learnt what it is to choose beauty over the overwhelming ugly in the world.

- We have learnt that we are not defined by our limitation but annointed to overcome them.

- We have learnt to take joy in the moments of true delight and to redefine what true delight is to us.

- We have learnt to hold one another close and wait.....wait on our God for His perfect timing and His perfect answer.

-We have learnt his answers are not always what we have asked for or wanted, but ultimately that are always good!!

- We have learnt that this sacred season will never end, but it will continue as we walk out all that we can run with hope and joy into.

And so as my boy sleeps with a smile on his face and his legs curled tightly to his little chest, we all see the scars, feel the bruises but give thanks!

For those of you who have walked this journey with us, we have no words........we are so acutley grateful for the times when you literally held us. Whether in prayer, in acts of service or words of encouragement, know that every little bit of it made a difference. You will never know how much but we are so humbly thankful!!

Calebs journey will never be over. We have been given a 6 month reprive from surgery, but even today the specialist was quite realistic that Caleb knee construction has been only partially successful and we will need to intervene sooner rather than later and that will probably mean and permanent brace until surgery is required again. He also requires ankle and foot surgery and the foreseeable future. BUT for today, for this night that can wait..........

Tomorrow is a big day

It is 3 am and I sit here trying to ellouquently put my thought down in words......but it is not working. we foundout today at the frame is COMING OFF tomorrow morning. Our surgeon surprised us with the news at today appointment (the second time as 3 weeks ago he surprised us with the removal of two pins).
And so tomorrow the journey with an external fixator comes to an end. Our excitment comes cautiously as Caleb must have a plaster for two weeks and then have a pressured boot fitted for 6 months and he is none too happy about a cast at Christmas time. However as I sit here in the wee hours I am struch but just how significant tomorrow is!!! There is a strange part in all of us that can't explain how we feel? You would think that we would be ecstatic about this day and yet it is so mixed. Calebs frame has become a part of our life and even he is not sure about how things will feel tomorrow. At our appointment today the struts that were holding the tension and weight of Calebs leg were released and he walked with his full weight through the bone for the first time. The brave boy soldiered on as this created a lot of pain to begin with. It is truly miraculous to see the way that he works through each of the new things thrown his way. it is easy to see now how the events of these last months have truly created a stronger more determined Caleb.
There were so many times that I thought we had lost a part of Calebs spirit and I was not sure he would ever return, but slowly by slowly through the last couple of weeks, he has come home to us. Through his determination, he has walked out of this both literally and symbolically stronger and more mature.
And so the words do not come easy tonight as I find myslef tumbling through the last couple of months in my mind and I cannot adequately express what tomorrow brings for us. And so I will return to bed, try and sleep and tell you all about it tomorrow.