Wednesday, April 8, 2020

World of grief

This past week has honestly been a really tough one.  Maybe it's because as of writing this blog it has been 9 weeks, 1 day, 11 hours, 36 minutes (and counting) since she was here.  Maybe it is because I have virtually sat in on two circle times with kiddos who are Sonzee's age and who go to her school.  Maybe it is because in less than 24 hours we will be celebrating our first of many big holidays without her here.  Maybe it is because this week alone two other families were forced to say goodbye to their daughters.  Maybe it is because it was challenging enough to live a life in the world of medically complex, but it is nearly impossible to live in a life without it.  Maybe it is because Sonzee's sister is also having a tough week and I hardly know how to manage my own grief, it breaks me, even more, to make sure I am there for her how she needs me.  Maybe it is just because life gives you lemons.

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. 

The Mighty Contributor

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