Yesterday we painted. We read. We watched some Mystery Science. We went to the clinic to have Cee’s monitoring bloodwork done. We went to the zoo. We made peanut butter shakes.
It was a normal day. It was okay.
We get through the days, pretending to do school, eating vegetables, and making up words to songs.
It’s okay. Until it’s not.
We’ve had time to process the sort of “end of the line”–ness that we’re dealing with. And we’ve just moved on with our regular routine. I don’t think it’s denial. I think sometimes we actually forget how odd our life is. How unusual it is to go to the hospital every four weeks for infusions. To give our own child an injection of a chemo drug weekly. To be flying across the country to see some random doctor.
Recently when I updated another mom on how Cee is doing, the gravity of our situation hit me like a ton of bricks.
In a four-month span, Cee’s disease just annihilated her hip cartilage.
Will it attack her actual bones next?
All this attacking occurred while receiving mega-drugs. Mega-mega-drugs. Picture a burglary happening in a place where there are armed guards on every street corner. How do you slip right under Mr. Machine Gun’s nose?!?!
Will it attack her heart next?
There’s no way to know where this train is going. In the last four years, her disease hasn’t really followed any predictable patterns. The monster we’re fighting keeps changing shape. Things have been fine…
And all the sudden, they aren’t.
It’s weird. And frightening.
This tension between living our ordinary life and thinking about life post-Cincinnati i complicated. Like fish washed up on the shore, we are emotional flip-floppers. We are happy! We are sad. We are hopeful! We want to run away and join the circus. We understand that this suffering has some greater purpose. We are are ready for this d-a-m-n cup to pass already. We laugh. We cry.
I’m glad I don’t have to figure out what to say to me. Let me unpack that. I feel sorry for the people who know us in real life– how hard it must be to know what to say. Several friends have preemptively apologized “in case they’ve ever said the wrong thing”, (even though they’ve never said anything remotely offensive), so I know it’s a concern. I am grateful for the people who brave talking to us, even at the risk of saying the wrong thing.
Hey! How about a bonus.
A Quick Guide on Navigating the Confusing Waters of Conversation
– Say nothing. We know plenty of people who haven’t said a single thing about our upside down world. That’s fine. If you can’t handle the seriousness of Cee’s diagnosis, it’s much kinder to pretend it’s not there. I’m being honest. If you can’t deal with whatever raw feelings of ours bubble up when bringing up our life, then it’s best to stay away from this mud pot. (Yellowstone shout out!)
– Practice “emotional mirroring”. I just made that up, so don’t google it. Whatever emotion we (as Cee’s parents) happen to be displaying, do that too. If we’re crying– you can cry. If we are laughing– you can laugh. Probably not a good idea to do one when we’re doing the other. If we’re upbeat about what Cincinnati will bring– you be upbeat, too. If we’re terrified– you be terrified, too. In the course of the conversation, you might have to bounce around between a few different emotions in order to do this effectively. If that’s too exhausting, default to option one.
– If you start to feel these phrases rumbling around inside, fake an incoming phone call. Or a heart attack. Whatever it takes to keep the advice diarrhea from leaking out.
“God doesn’t give you more than you can handle.” If I had a dollar for every time someone said this I could buy an actual handle. A broom handle. Made of gold.
“At least it’s not cancer.” Riiiiiiiiight. FYI, cancer is a possible side effect for her medications. Thanks for the reminder.
“You can’t think like that.” Thanks for telling me how to think!
“Have you tried this supplement?” Nope. But we did do a bunch of research before deciding not to try it. Or we wanted to try it, but it interacts with the drugs she’s on. Or we tried it and saw no results.
“What doesn’t kill you makes you stronger.” Biggest. Eye roll. Ever.
I feel the need to qualify the point about advice diarrhea. All this advice was offered from a place of love and support. We harbor no ill feelings toward anyone who has said or will say these words to us. So do not feel bad if you have. (I have actually said some of these words to people in other situations. I didn’t realize they were irritating until I started hearing them.) It’s more of a public service announcement. Just so you know– no one finds comfort in being told they will be stronger from this trial. They find comfort from someone nodding along with how much a situation stinks. When in doubt, validate. And hug.
To sum it up, you can never go wrong with listening and agreeing. (Pretty much that’s how I landed a husband, but that’s a story for another day. Thanks for the tip, Dad! )
Things are okay. The kids are watching a movie. I’m type-ity, type, typing. There are dishes in the sink and clothes in the dryer that need attention. It’s so decidedly normal.
Until it isn’t. Until we remember just how fleeting life can be. Until we consider our future filled with question marks. Until the tears come.
But then we find some mysterious sticky patch on the floor and are jerked back into reality. The baby scrunches up her nose and gives us a big smile. We cuddle up on the couch with a library book. The tears get packed away for another time. And it’s okay again. Flip flop. Flip flop. Investigating the sticky patch takes precedence over investigating pericarditis. We are the flipper floppers.
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