Tomorrow, Lily has a routine follow up at CHOP--just a CT scan to establish a baseline for the size of her ventricles and an ophthalmology appointment to follow up on any lingering eye issues from her shunt failure a year and a half ago.
You know, just regular things.
And tonight, she was upset. I mean how can she not be? This is total crap for a a nearly 15 year old girl. It is total crap for anyone. She wants to be normal--and she is normal, but she's got an extraordinary burden to carry. I hate that for her. But, then I love every single bit of that first born of mine. Lily is so deeply kind and full of love--for everyone. Her courage--courage in facing terrifying things and her courage at sharing how much it all sucks is nothing sort of extraordinary. I cannot take away the bad parts of her story--those are mixed with good and together they make Lily the most beautiful, amazing 14 year old I know.
When she was a little girl, she did not have night-before-anxiety over her MRI appointments. But we did--and the scanaxiety would start weeks before the scan. I'd stay up long past any reasonable bedtime scouring research studies and family care pages to find some clue that would tell me what the MRI would show. I'd spend hours in agony. And then after the scan, I'd be a total nutter--refreshing my email every second, then avoiding it for hours and hours at a time, until eventually her doctor either called or I passed out exhausted from days of anxious energy and fear.
I did have one game I'd play with myself that provided some relief: "The Things I Know in This Moment Game." I started this game, inspired from my yoga and meditation teacher training--after all that breath work anchors you to the here and now and also from my mentally-ill hours of reading other children's cancer stories and analyzing if Lily was anything like them. The game works like this:
When I feel extreme anxiety or fear, I begin listing what I know is that moment: my daughter is healthy, my daughter is doing well in school, there is no clinical indicators that show something could be wrong, my daughter is resting, my daughter is fine today. The lists in my head would be endless.
Tonight, when Lily told me that everything about tomorrow was awful, I had to share my game with her. She thought I was insane, at first. But, then I began listing the things I knew. And the most marvelous part of listing the things you know in the moment is that so much of it is indisputable facts: the CT scan is just a baseline; the ophthalmologist is because you are due for an eye exam, you train for crew for 2 hours a day and dance for 2 more, you are getting straight A's, you do not have any symptoms of anything wrong, today you are fine, you are sitting in your room, we are together, we don't need to wait for any results tomorrow, everything we know in this moment is that we are okay, your family is here, and on and on and on.
And I think it helped her a little, to be rooted in tonight, not tomorrow. It also helped that her sister, her brother, her cat and her dog all heard her crying and came to her side with jokes and tissues and cuddles.
So, another thing I know in the moment: My daughter is so loved.
For now, I am going to make my own list of the things I know in the moment: My daughter is a warrior. She is growing up and that blessing is bigger than the past fears. I will always worry. But my girl is okay. And we'll all be okay, together.
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