Sunday, May 16, 2021

Today is Hard (Day 136)

A friend texted me today, thinking of me. She wrote that she could only imagine how hard today was. 

And you know at first I thought, today isn't hard! Everything is fine. I am fine! Lily is not sick. She is fine!

But the truth is, today is fucking hard. As long as there is a May 16, there will be an anniversary of Lily's diagnosis, which means there was a brain tumor and everything that happened 14 years ago, really did happen. 

It is so hard to remember and dangerous to forget.  Truthfully, I just want to scream and yell and break things and let out all the anger that boils up when I think about the shit luck of a tumor in my baby's brain. Then, I want to go into hiding and pretend like that rage storm never happened. And then I want to forget about today. 

In so many ways, it is almost too hard to write about today, so I am not going to write much more. 

I'll leave you with this, Lily at 14 months old in the PICU. That tube on the right side of her head, is an external shunt, draining brain fluid. I could not pick her up and hold her without a nurse to help, because the height of tube for the shunt had to be just right to drain her brain fluid. 

After her tumor surgery, I was scared Lily would not smile again. But, she did:


And that's all I've got for tonight, friends. 

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