My heart breaks for you. Obviously you are a mum dealing with a busy family life as well as the heartbreak and stress of dealing with your son's illness. As mothers we are supposed to nurture and protect our children and so when this happens we begin to question. Was it something we
did or didn't do, have we passed this on somehow because of our genetic disposition? Whether our concerns are reasonable or not, our heads spin with "what ifs, why our child, what are we going to do to help our beloved child from this insidious, horrible illness" and on it goes until we also become ill from anxiety, sadness and stress and yet we just have to keep going (when all we want to do is sleep) for the sake of all who depend on us. Lonely, helpless and sad is how I would sum it up. Sometimes I don't even know how I feel. Sometimes I will be in the middle of something like work, driving or shopping and then some minor thing will remind me of my child and I will begin to cry and generally go and hide, so people can't see that inside I am falling apart.
My youngest daughter (I have three) was diagnosed with CML, an incurable rare blood cancer, last year. I live in Brisbane, she lives in Sydney with her husband. She hadn't been feeling her usual self and had several visits to the doctor who happened to be a close family friend. He decided that she should undergo some comprehensive blood tests to see what was causing so many symptoms. Several blood tests later she received a call from the Hematologist telling her to come in on Monday and bring her husband with her. This was on the Thursday and so she had three days of anxious waiting. The fact that they told her to have her husband with her sent off alarm bells. Her husband contacted their doctor friend and asked if he would find out what was going on, which he did. He arrived at their home Thursday night and told them that my beautiful girl had cancer. Two days later my daughter found out that she was also pregnant with her first baby.
I was at home alone when the phone rang. My tearful daughter broke the news to me. I at first couldn't take it in. "No, no, no" was all I could muster and the impact of that news felt like a physical blow. I have never been more devastated. My first child, a beautiful boy, died when he was 9 weeks old from SIDS which I never saw coming, and I thought I would never recover, I haven't deep down, and I never will, and now I was facing the prospect that I may lose yet another most beloved child.
I have come onto this forum also to find out how other parents are dealing with this. Christmas 2015 my niece died aged 43, the mother of two, after battling cancer for 22 years. Her mum, my sister-in-law, and I are very close. She is having a very hard time dealing with the loss of her only daughter and yet she if doing her best to console me and give insights into how she dealt with her daughter's disease (breast cancer that matastasised). She has told me that at times her daughter did not want her around because she couldn't bear to see the pain in her mother's eyes. Recently Elle has told me how grateful she is that I am not falling apart and how she admires my strength. If only she knew.
I think MammaBear the only thing we can do is maintain a facade of strength, optimism and determination for the sake of our precious babies and keep our vulnerability to ourselves in front of them. We have to pick our times for falling apart and hide our tears. I have the luxury of being on my own in my home and so can cry often, however, I think this must be so hard for you to bear when you are taking care of the rest of your family. I hope with all my heart that you have a supportive husband and perhaps parents who can help you through this. I pray that the universe will conspire to do everything to help your son and also you. I no longer believe in a merciful god because if there actually was a god then why would he do this to the innocent when so many undeserving humans just breeze through life without anything devastating happening to them.
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