I have had a love/hate relationship with the term hope since February 11, 2015. There was always an internal tug between protecting myself and relinquishing the fear of actually allowing myself to be crushed by the fallout after hope failed. After all, living a life where death is waiting on the doorstep is nearly impossible without giving in to some sort of hope. Hope that seizures will be few and far between. Hope that illnesses will come and go quickly and not leave behind any secondary long-term symptoms. Hope of limited hospitalizations or at least quick ones and enough recovery time between the next one. Hope that the decisions that are being made are the best ones not only for the moment but for whatever the foreseeable future looks like. Hope that going to sleep will result in waking up. Hope that the days are filled with more calmness than turmoil. Hope for the best-case scenario. And dare I say, at some points even possibly hope for a cure.
There came a time eventually when hope became dismal. When the real hope of life ever becoming normal, different, or potentially something other than what it was really meant to be was no longer in view. When I realized that what I hope for can't be anything long-term because days became obviously numbered and all there was, was a new perspective on hope. Hope has always been an abstract concept, but it now turned into something ungraspable because I won't ever learn if my hope is being achieved. I can't ever receive confirmation because instead of hoping for my child to be "cured", or for her life to be significantly easier, or for her to be seizure-free, or for her to speak her first word, or for her to do any of the many things that her body was deprived of due to a lack of a functioning CDKL5 gene, I am now simply hoping she is resting in peace.
There is no more hope for a cure when you start to live life after CDKL5. There is sadness for all the CDKL5 siblings left behind as they continue to suffer. There is extreme empathy for those families receiving a new diagnosis, but there is less of a care or emphasis for any sort of cure for something that doesn't matter because it cannot and will not bring my child back. Maybe that is selfish. Maybe it is just a moment in my grief journey. Maybe it is just the cold hard truth. I am no longer able to hope and dream of any positive potential for Sonzee. There are no more hopes for walking together and hearing about her day or what her dreams are. All I am left to do is hope to dream of my dead child, continue hoping she is safe, and hope that after I die I really will be reunited with her.
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