Boy oh boy, this was the best piece of advice we were given at diagnosis.
I can remember, when we first came home after his first block of treatment, he hadn’t really washed for two weeks. His battered body still had remnants of the iodine solution which had been used before the port was surgically inserted in his chest. There was a smell about him, a hospital one that I was desperate to get rid of; I wanted my boy to smell like my angel again. And so, I ran a shallow bath, prepared fresh flannels and towels so that I could wrap and swaddle my baby again. Felix was anxious about bathing because of his port. He hadn’t really looked at it and the thought of it scared him. He did not want to get undressed. He cried, he begged, he refused to move. This was tough. How could I force my son, who had been to hell and back in the weeks before, do something he really didn’t want to do?
The time came for him to go to school to see his friends. Felix tried everything not to go: feeling sick, headache, tiredness, tears, emotional blackmail. I knew it was the best thing for him as he was becoming isolated and losing confidence. We needed to break the ice so that he could engage with his peers and regain his confidence. Felix and I sat outside the school in our car, tears streaming down his face, pleading not to go. It was so hard watching my baby cry knowing that I could quite easily take his fear away by simply taking him home. It tore me up inside; again a voice piped up, ” don’t create a monster.” I found my inner strength, wiped his tears away and held his hand tight as we walked into school. After a long hour, sat waiting in the car, he bounded out with a huge smile on his face. He did something he didn’t want to do; the monster was kept at bay.
There are many things it would be easy to ignore or avoid because of what he is going through at the moment. I could quite easily let him off doing chores, or having a shower or sharing with his siblings because of the pain and suffering he is enduring. However, kids need boundaries, all kids need boundaries, kids with cancer need boundaries. If Felix did not have boundaries, he would quickly turn into the monster we had been warned about. To bend the rules for a short time is fine when you can rein them back with relative ease. Whether it is a bout of chickenpox or a holiday, we all need to the chance to run free for a short time with the knowledge and security that normality will resume sooner rather than later. This is not the case for Felix, his treatment will last for just over 3 years. We cannot let him run free for that distance because he will never make it back . The boundaries need to stay in place, despite what he is going through, to ensure that he continues to feel safe, secure and at one with who he is to avoid any allegiance with monsters.