Untied Laces (Day 162)

A week ago, we were in the Emergency Room waiting for the CT scan which would lead to Lily’s shunt revision surgery. 


I have not progressed much beyond my shock. And despite my writing here, I’ve chosen, quite out of character, to not really talk about what happened at all. Everything that happened is so loaded. This incident is not something that happened in isolation—it is probably something that will happen again. And that just really sucks. 


What sucks more is that Lily also knows this will most likely happen again. 


And writing that is not being pessimistic, it is being totally and completely honest. 


I do, however, believe, that no matter what, that Lily’s life will continue to be beautiful—all the curses will continue to be muddled and marred by blessings (and when there is a mess to be made, it should be a beautiful, blessed one.).


On Tuesday, 72 hours after brain surgery, Lily returned to school. On Thursday, she marched in our town Pride parade with one of her best friends. She continues forward—and Lily will not stop her life, ever, because she’s fought so damn hard to have it. 


I am totally in line with her. I mean my head is and my heart is too; but my body is not fully ready to just get on with it. Every time I’ve started anything this week, I’ve floundered 14 times before I’ve launched. And then I’ve crashed and had to launch again. I know that and I feel like, I have to get on with it. But I can’t. I have so many lingering issues and rage and sorrow and frustration. 


It is the frustration that trips me up, just like untied shoe laces. I am so frustrated that we continue to be dealt difficult hands. And then, I am frustrated that I continue to ask “why us?” when truly the only question is “why not us.” I am frustrated that I cannot bring myself to fully speak to my closest friends and families about what happened. I am frustrated that I think I never want to talk about this, and then, frustrated that I keep writing about it. I am frustrated that no matter how many damn times I think I’ve doubled knotted up my life, I return right back here. 


And I don’t even know where this is. 


And I am frustrated that I never have a proper ending to writing about all of this, because it is a story that will repeat itself and what happens when I’ve iced everyone out and they stop trying with me? What happens then when I finally decide I need them? Will they be there?


And I don’t know. I don’t know anything. I never have. I never will and there is nothing more frustrating than realizing that even if you double knot up your life—and do everything perfectly perfect and correct—that everything can still implode.  


It’s hard to walk when you are tripping over untied laces.