I have written previously about losing my husband to Mafan’s syndrome in 2020. I have talked about the grief that continues to visit. However, my son getting diagnosed with this condition feels like a different kind of grief.
At first, I was so sad and angry. I have had to let go of the angry as it was not serving me or my children. I found my mind racing to all kinds of worry, anxiety, sadness, anger, why me’s, why him’s, how am I going to do this, I can’t lose him too, worry about how he is doing with his diagnoses and how he is processing…… I was in a very negative mind space that gave me negative thought loops that seemed to be on endless repeat. It felt boxed into this diagnoses as if there were no options.
On the opposite side, I had friends, family, and acquaintances telling me how grateful I should be to find out this information. I didn’t feel the same and it was very hard for me to “handle” peoples otherwise well-meaning, loving thoughts and positive perspectives. I remember when I was at my kids school and a mother, whom I didn’t know very well, came up to tell me how great it was I found out about my son. Truth be told, I don’t remember what I said to her. I wasn’t mean, but I told her something along the lines of “this is not good news, my son has a fatal condition, let’s not be cheerful about that.” The thing with grief is, no one knows what to say or do. They are all just doing their best. They are acting off their own thoughts and feelings. Maybe this particular Mom felt bad and wanted to do something to help me feel better.
I had my son home with me one day. His siblings were all at school. I was cooking dinner while he ate a snack. I was lost in thought and quiet; he was too. All of a sudden, he says so light hearted, “Mom, it’s sad that Papa died.” I said, “Yeah, buddy it is.” He was quiet for a minute, then said, “Mom, he died because it was just his time to die.” I said, “Yeah, I guess it was. I miss him. Do you?” He said, “Yeah.” Then he was quiet for a long time. I thought the conversation was over but then he said, “Mom, when I die, it’s just going to be my time to die too.”
It took me some time to process this conversation. What I realized is that all these thoughts I had were not helping me or my kids. They were keeping me stuck, stuck in grief and unable to show and serve my children.
I wanted to come to a place where I honor how I felt but move toward a more useful place. I decided being in a negative mind space and swimming in negative emotions was not going to help me or the kids…especially Lucas who needed me to make decisions for his healthcare. I didn’t want to be in a positive space where I am grateful for his diagnoses because that would just be lying to myself and not be authentic. So, I decided I wanted to be neutral about his diagnoses. If I can mange my mind and stay in a space where I am not in a negative emotional state, nor in a positive state, I can make decisions for his healthcare. It also helped me move beyond the negativity I was putting on myself and, in turn, on my children.
I live in the understanding that each day with Lucas is a new day with a diagnosis that is volatile. For the most part, I work my mind to stay only in facts about how Lucas is doing today. I still feel grief and sadness. I recognize these emotions, allow them, greet them, then say goodbye.