Tuesday, January 19, 2021

Complicated Burdens (Day 19)


Yesterday, I was in a really good place. Grateful. Busy. Forward moving. Today, I am still grateful, I am always busy, but I am not moving like I am accustomed to. I feel stuck, disconnected, like I am in another place entirely.  I feel like I am just finally landing, firmly in this "after the ER scare when childhood cancer reminded us it is forever" place.
 

And I hate it. 

It's hard to pretend nothing happened--when I've told everyone and I am really incredibly lucky to be surrounded by love and support. I am not complaining--no--it is this love and check ins that give me strength. I want the outreach. I welcome it. Don't stop. 

But it is complicated, right? The more people who talk about it, the more real it is. 

And it is hard to put into words what I am feeling exactly. I'll try, because words are always my drug of choice, but it is hard to pull it all together into something that is not a misconstrued sound bite. My acute concerns are not that Lily's shunt is failing or that she has a weird brain syndrome affecting her eye sight or that she has a tumor. I know none of that is happening. I will always worry about these things (plus other things strokes and seizures and secondary cancers and everything you can imagine) but those are
worries that are often irrational, even if they are fueled by some logic (of course all these could happen and she is at higher risk just given her medical history). What is weighing me down is the reality that Lily is almost 15 years old and now, this burden, this worry, it belongs to her in a way it never did before. 

I never thought about how hard it would be to watch her struggle to pick up the heavy, unwieldy package of childhood cancer as a young woman. 

She has to pick up the vigilance of watching for neurological symptoms that could lead to shunt failure. She has to pick up on monitoring her health for her whole, long life. She has to carry everything that comes with being a childhood cancer survivor: long term side effects, fear, anxiety and difference. How will this affect Lily's ability to drive a car? Will it? Should it? How will this affect Lily's college experience--can she really go to a frat party? Will she be scared to travel faraway, because before she goes she needs the name of the nearest ER with a top neurosurgeon on call in case of her shunt failure? Should she ever go on an African safari? Or explore the wilds of Alaska? Will she be able to afford health insurance as an adult? What happens when she wants to become a parent?

I have no doubt she will do it--Lily can do anything. She's been training for this since she was 14 months old. But, I hate it for her. It breaks my heart in a million pieces to have a daughter so strong and at the very same moment my heart is bursting with gratitude and joy at her incredible, determined, joyous spirit. 

This breaking and bursting cycle repeats endlessly--I don't know what I am? Am I happy? Am I scared? I just simply have no idea. It is complicated. 

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