burst bubble

This is a guest post by Kathi PalitzKathi is 33 years old and mother to three daughters. Her middle daughter, Vega, was diagnosed with acute lymphoblastic leukaemia in January 2012. She is still on treatment, and will be until June 2014, but is doing well right now. This is a very open and honest post about a mother's feelings of helplessness and loss upon her child's diagnosis. It's the second post to feature on this blog about the complicated issue of 'living loss'. Click here for the first.My middle child, Vega, was diagnosed with leukaemia in January 2012. It was an incredible shock, suddenly being faced with the possibility of my then three-year-old child dying. I have not had many losses in my life, other than my grandparents, and somehow I felt like I had lived my life happily in a pink coloured bubble until my daughter’s diagnosis. Suddenly the possibility of her life ending made me feel utterly helpless. I could tell myself that I was foolish to feel like this, that everyone's life had to end at some point. But in my pink bubble people died when they were old, having had a long and more or less fulfilled life. They would pass away peacefully, in their sleep or with loved ones by their sides after having had a chance to say what was left to say. Children don’t die. My child couldn’t die.All of a sudden my bubble burst and I entered a cancer no man’s land. I felt so bereaved; I felt like I had already lost her although she was still there, right in front of me. From one moment to the next our whole future changed – both hers and mine. I grieved for both the person she would have been without cancer and for the relationship we would have had without living through such trauma at such young age. Of course I feared for her life. The uncertainty as to whether she would live or die paralysed me.In the beginning, when she was very poorly, I found it almost unacceptable to live with her diagnosis and I became very angry. The words ‘life threatening’ were like a bad joke – an evil trick being played on us. The patient is given time, the possibility to live, but you always know it might not be for long. The good moments become so bittersweet: each laugh, each hug, trivial daily things became a reminder of how empty my world would feel if Vega was gone. I felt under pressure to live, to cherish these moments but the more I did the sadder I became. Death had entered my life and was slowly tainting every moment of it.I soon found out that a terminal or life threatening illness is not just a diagnosis either. We began to see Vega deteriorate, suffering through medical interventions to save her. One of my most painful moments was when I began to wonder if all this pain was really worth it. Seeing her so very ill due to the disease, but even more so due to the treatment, I almost lost faith. I was terrified of seeing my child suffer a painful, long death. I feel so ashamed of admitting that I harboured these thoughts, but I even longed for it to be over. As a mother you are there to fight, to never give up, to believe. I was given a chance to fix her, something that other people never get. But it is hard to be positive when faced with such misery and pain.Vega did make it through the worst of her treatment. She never gave up and as time went on I took her as my guide. I realised that she is who she is – a future can not be foreseen – cancer or not. It seemed ironic that I would grieve for something I never knew I would have. My expectations of life, or more specifically, a normal life have changed somewhat. I now think that there is no such thing. In the beginning I often caught myself thinking, Nothing will ever be the same. But nothing ever is the same anyway.I have moments when I can feel panic starts to wash over me, about the cancer coming back, about losing her after all we have been through. I do not fight these feelings anymore, maybe I have lost that resilience or maybe I have become more accepting. I don’t think this will ever go away again. I will not forget the many evenings when Vega was in hospital and I was having dinner with her sisters, with the big Vega-shaped hole between us. But Vega is living as if there is a tomorrow, and so I try to as well.