Smoke em while you got em
Every time we’ve had a few days home, I find it IMMENSELY difficult to let myself enjoy our life.
Before this last stretch of six and a 1/2 days, the longest we’ve been home in two months is three and a 1/2 days.
Knowing these few short days are designed for Phoenix to build strength only so they can wallop him again with chemo- it’s like fattening the calf.
I hate it.
It’s false hope.
Giving us a taste of reprieve and then yanking it out from under our feet as soon as we begin to really feel the ground.
On our last day before chemo round 2, Phoenix felt good enough to hop on rocks by the river and show up at the Chipotle fundraiser to see his classmates but I knew we would leave by 7 am the next morning to hook him up to an IV pole for the next five days and pump toxic chemicals into his body.
How can I let myself let down and relax into this moment when I’ve got to gather it all back up again and be together enough in the morning to make it through whatever might happen?
If you’ve ever read Brene Brown’s description of FOREBODING JOY, it’s that.
The second I look up and smile, the other shoe starts whistling through the air, ready to drop on my head with a sickening thud. Better to keep my head down and practice my grimace.
While we’re home, I go to an appointment with my nervous system whisperer, a woman who has been helping me understand my body and how to navigate trauma for the last two years. I tell her how hard it is to relax and enjoy this reprieve and she hits me with the wisdom of the ancients: “Smoke Em While You Got Em,” she says.
“At this moment, Phoenix is fundamentally ok. He’s in the house, playing with his brothers and sister, and he’s ok. Where do you feel that in your body?”
“My ovaries,” I say.
“Good- feel that. Take it in. He is fundamentally ok.”
But I would like a GUARANTEE for the future, PLEASE. The NOW is not enough for me.
I want to secure my hope. Tether it to facts and action-whatever works for the day to stave off the panic. Research the shit out of it and do every single thing I can to help him live.
But the truth is, me pushing every last supplement down Phoenix's throat does not guarantee any bit of saving from pain.
It keeps him aware he is sick, and the hovering high-pitched spirit I do it in communicates that I am NOT OK and because I am NOT OK, I cannot let him be OK.
But he IS ok.
He GETS to be ok.
He gets to Smoke Em While He’s Got Em.
He needs normalcy. He needs a few days of not being hooked up to a pole, stuck in a bed, and made to do all kinds of things he does not want to do.
You cannot heal in hypervigilance.
All my good intentions for nurture, if done with clenched fists and clamped jaw, bring a spirit of fear into this holy space. Fear is not a healer.
And, he doesn’t need me foreshadowing the coming treatments to somehow make it less painful by my preparations.
Nothing can prepare us. Nothing can guarantee less pain.
It’s also not up to me.
I mean, it is and it isn’t.
I wouldn’t be ok with myself if I wasn’t making it my full time job to help him be healthy. But then we go home and I see him play with his brothers and his sister and I know they offer him a kind of healing I can never give. The effortless gift of just being together without an agenda.
I do have an agenda- help him be healthy.
I can’t shake it.
I’m constantly cataloguing food intake and tooth and mouth care and what supplements from my page long list I might be able to sneak into food.
And yet I know healing can’t happen in a space with an agenda...so how do I hold this paradox?
I don’t know.
But if I watch him, I will learn. Cause he found all the rocks and kept sitting or standing on them. He found the sand and buried his legs in it. He found the community table at chipotle and sat down at it to break burrito with the brethren.
That’s as good a way through as I can imagine.
Smoke Em While You Got Em.
