Wednesday, April 8, 2020
World of grief
I wish the multiple vats of lemonade I made this week (to rid it from our house for Passover) made a slight bit of difference. But truthfully, there is really an insignificant amount of lemonade that can be made out of having to bury your 4-year-old and then live the rest of your life with the constant reminder that you did. There are no sufficient answers to so many why questions and the answers really don't matter in any case. There is only so much that can be done to help the confusion, pain, and understanding to a 10, 8, 6, and 2-year old sibling. After all, what they should have only known was the amazing joys and typical challenges that having four additional siblings meant. There should be three little girls in matching outfits fighting over headbands and socks. There should be another doting sister dragging around the 2-year-old. There should be another girl part of the club not allowed in her oldest brother's room. There shouldn't be a huge piece of the puzzle missing causing the completion of each of their individual puzzles impossible.
I wish there was an end to this grieving process, that there was a class I could enroll in and upon completion, I would graduate out of mourning. I wish one day I would wake up and feel completely whole again, yet every book I have read has prepared me for the fact that this is a journey in and of itself, a marathon if you will, one that isn't going to end but one that will continue to evolve and change throughout the years. Sadly, I know what that means, and in 7 days from this post, it will have been 5 years since we began Sonya's Story: A journey with CDKL5, a marathon that has proven itself impossible to finish. Despite the many medals we might have accrued, despite the number of water breaks that were taken, despite the small celebrations and minute victories along the way, and even without her here to be with us physically, we will always be living a life intertwined with CDKL5, and so too will our family forever be living in a world of grief.