The balance of empowerment...

Caleb has enjoyed a good day yesterday with the excitment of having his friends join him and with the cleaning up of his leg. Although it was painful it has allowed his leg to look so much better and that has given him so much more confidence.

We are grateful for this good day as we have woken up in a different place today with Caleb very tired after a restless night and very sick in his stomach. And so we will wait and see what this day will bring, whilst trying to move on with his rehab and recovery........

It is the most challenging part of this experience- letting Caleb be Caleb and allowing him as much control and empowerment as we can possibly manage. Caleb has lost all sense of independance and control- he is assisted to toilet, he cannot move without assistance, he is told when to take his meds, when he has to do physio and he has very little choice in when painful procedures occur!! All of this has added up to Caleb striving and to maintain and take bvack as much control as he can which at times has equaled a little bit of resistance to his treatment. All of the medical staff are very understanding of the mentality behind his resistance but neither the less, sometimes there is simply no choice for him.

This is simply the most challenging part to manage from me perspective. Most would assume that the pain and tortorous procedures would be more difficult, but there is a certain amount of detatchment that has begun to occur for us to daily get through those moments. It is the times when the Caleb I know disappears and I am left with a Caleb who is struggling to feel as if any resemblence of the life he knew and misses is still here. It is in these moments that I cry out for the wisdom of the Holy Spirit to kick in and allow me to discern beyond my own understanding how to work it through with him. Mostly we manage after a lot of talking to come to an understanding- sometimes he does what he need to and sometimes I allow him to make the choices for himself regardless of his consequences. For example last night he flatly refused his most effective med. He simply did not want it and in a silly deicsion of our we forced it and he respoded quickly by spitting it out- not the Caleb I know but the Caleb who simply wants to make decisions for his own body! I realised quickly that Caleb is entitled to make these decisions as only he can know what pain he can tolerate. And so after talking it out with Caleb he know can decide when his pain is at the level that he needs this particular medicine. If however the pain gets too bad he understands that this is the only option.

And so I find myself in a place of learning how to parent with the whole picture in mind and still allow him the respect to make decisions for himself. There are moments where he simply must do what is required and it is in these moments that I pray for the wisdom to know how to encourage and approach these moments for him.