There are certain conversations you can imagine having with your spouse when you first learn you will be parents. You discuss your opinions of learning the gender of your child prior to birth. You each offer a list of names that might be suitable for your unborn child. You discuss schooling and potential activities he/she might participate in. You talk about desired traits you hope they have and the ones you hope skip to the next generation. After you have a child or two the conversations slightly change, but they are still based on your hopes and dreams for the new child and you may talk about how all of your children will interact together. As your children continue to grow your conversations may shift, but the basic premise stays the same. Until that time your fourth child was suffering from an incurable disease and the topics shift and become....morbid.
Never in my life did I ever imagine that my dinner conversation with Sam would turn into a discussion of "quality vs quantity of life". I also never anticipated that our differing views regarding "what happens if..." might one day actually have to have an answer we are both in agreement with. These discussions while hypothetical might actually become our reality and I do not think we are really on the same page. These discussions need to be had now when we are not caught up in a moment, when we are not pressured into actually making the hardest decision(s) of our lives. We need to make sure we are both at peace with whatever discussion we come to, and hopefully neither of us will feel slighted. I am frustrated that we even have to discuss these matters because IT IS NOT NORMAL.
I have decided that I have obviously overused the phrase "I can't even imagine" during my life, because G-d has so kindly placed me into situations where I no longer need my imagination. My reality is filled with happenings others tell me I should avoid reading about. Even if I could "shelter" myself from what is occurring in the lives of families with other children who also have CDKL5 mutations, I would not want to. We are all a family. We are all in this together, whether we like it or not. Our children face different hurdles and have different circumstances, but the outcomes do not differ all that much. We all make what we feel are the best decisions for our children and family that "help" us walk along the path.
So as always I find myself asking, "How do we prepare". Is that even possible? Maybe I have a false sense of security, but if we are armed with answers to the tough questions, I feel like things might be "easier". In all honesty, what actually scares me is that if we are placed in a situation where our views differ from one another, one of us will obviously be left feeling resentment towards the other. I am just not sure how we find the grey area when the answers are either black or white.
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