Calebs land of giants

It is 11:25 and I cannot sleep- I finally have made the time to put all that is constantly running through my head into words. I have not had the internet connection to put it down before now, but also it has become such a disconnected monolouge of where we are at.
The last time I entered anything we were in the meriad of hospital specialists. In a brief summary:

• The removal of the top ring of the frame went very well. There was no complication with the actual removal.
• Caleb began to learn how to walk with a ligament in his knee for the first time in his life.
• The movement of Calebs knee was painful and very taxing on him for the first 10 days (still now but his mobility is definately easier) The orginal fixation of the ligament graft was tighter than normal in the original surgery. This was to allow Caleb to not overstretch the graft and therefore making it too loose and hence redenering the ligament redundant. This means that the stretching and utilising of the ligament is tough for Caleb and he has to work very hard to get range of motion in the leg. If he cannot mobilise the knee sufficiently they will need to return him to surgery to correct and fix with an external fixation again.
• Caleb was finally given access to a pain management specialist (after much arguing by mummy in the nursing unit managers office) who changed his medications to withdraw the likely culprit of his incessant itch. It was a drug that contains a derivative of morphine in it- hence the reaction. He has since had a complete medication review.
• As a result of changing his medications he unfortunately remained in hospital while he went through the withdrawal process of the offending drug and had the other medication slowly introduced.

Unfortunately the most obvious issue for us has been the significant emotional toll that this journey has taken on Caleb. After fighting for 8 weeks to have psychological support for Caleb, we were finally seen as an inpatient by a psychologist who has now passed out care onto a psychiatrist. This has seen Caleb diagnosed with anxiety disorder and probable depression.

Those are not words you really want to hear when you are discussing your 7 year old. We knew deep down that there would be consequences and that the very obvious signs were pointing in this direction, but you hold out hope that maybe your tiredness and the circumstances highlight it more than it is. Both of these conditions are medically induced and are in no way out or expectation according to his journey, but still......it is heartbreaking.

If I am honest, there was an overwhelming sense of failure for me as a mum. Now I know all the arguments against this, but still in the end there was a gap and I could not bridge it. We expect as parents to be the safe haven, the place of protection and comfort, the place of strength, and yet as much as I have fought and prayed and tried...... there are obvious signs of the toll of this experience upon his little self.

We took him to the beach last week. After we heard those words, we decided that the best place for him to find a sense of confidence and empowerment was in his normal life. So with a lot of hesitation from his surgeon, we took the risk and set outself upon a 'life therapy.' We wanted the time to be about life and normalacy motivating Caleb more than any set of exercises could. I wont pretend it was a holiday, but it was a gift to see him step by step conquer the things that terrified him- going in the pool, walking on the sand, going in the water were all massive things that he was terrified of!! But with each victory he gained a little confidence back and we saw little glimpses of our Caleb.

He truly is a brave little man- despite all that he fears and feels, he continues to take a breath in and step forward. Like on that very first day as he walked into that operating theatre, each and every day, I watch him make choices to continue. I watch him summon all his physical strength to move and complete basic tasks. I watch him struggle to cope with the tourment that comes with others views and reactions and choose to ignore it.

Sometimes he doesn't manage to summon his strength and it all falls apart- For eg tonight at dinner he lashed out at Molly when she pointed to him and said he had split some water. HIs reaction was completely extreme and it triggered me to go deeper with him. It turns out that his distress came from her pointing at him and he expressed that everyday he has people pointing at him and sometimes he doesn't mind, but sometimes he does and tonight he simply wanted no-one to point at him.

My brave boy is just like us... he has his moment when life becomes so acutely tender and yet he continues each and every day to take a breath and continue to step into his future. Just like the Caleb in the bible- Caleb has his promised land and for now his journey is filled with many giants, but with the courage and faith in His God, he continues to try and take on one giant at a time and one day......one precious day, he will walk into his promised land and in THAT land there are NO external fixators!!!!!