independence daze

this is what opdivo looks like (this is what opdivo looks like)

this is what opdivo looks like (this is what opdivo looks like)

tides had her second opdivo infusion yesterday.  she also had her second eye symptom of the week.  these are similar to the ones she had in the fall that signaled brain tumors, and the one she had in may that (apparently) signaled nothing.

but you must know, it Must be said, that she's doing really well.  cheery.  loving.  sleeping good, eating good foods, loving up her family.  it's a blessed time really.

and solas is getting more and more social and he sang us his first song earlier this week.  it went da-da-ba-ba for awhile, and then i think the chorus was doo-doo-fah.  (record industry execs feel free to contact me directly).

the whole family went to a non-violent communication family camp last week for five days (the violent family camp was at capacity, of course) and it was dreamboat awesome and it's the reason i never followed up on my hernia announcement from last week.

nonviolent kids

nonviolent kids

i basically got this hernia last spring.  i got an ultrasound and the doctor said it looked like there was a small tear in my abdominal cavity where my inner-child/inner-fat could start to poke through.  he said that sometimes these things resolve themselves but to seek treatment immediately if it ever gets worse.

so it went and got itself worse a year later on a friday night (when i wrote y'all) and the next day it was still bad so i went to the ER because i couldn't go to a regular doctor til tuesday since it's the 4th of july and the nurses at the ER told me to stop being such a big baby and sent me home.

so i'm fine, i guess. it's not an excruciating pain, just something that aches if i'm too zealous about lifting up big babies.

and that's how i'm physically doing.  how i'm doing emotionally?  glad you asked.  well, i was talking about it with my friend jason last night, and was saying that this is a little bit like jumping off a high cliff.  with a low cliff jump, you think, "WHOOAAAAAAA<sploosh>" and you're in the water.  with a 40 foot cliff, you think, "WHOOAAAAAAAAAAAA! Whoa...hey, wow i'm still in the ai-<sploosh>" far, no splooshes.  this cliff is 18 months high, so far.  so we keep falling.  keep praying.  keep whoa'ing. keep hugging the little one and each other.  keep thinking that maybe she's been cleared of all tumors already.  because you never know.  you just keep thinking...

another friend (i think it was you, malia) made the unfortunate mistake of asking me how i was handling things, and she asked at a moment when i didn't have a work deadline and when solas was sleeping.  so i gave her the long version.  i told her that this whole process for me has encouraged me to focus on the present moment.  now there's about a million different lovely quotes about how it's important to stay in the present moment, from lao tzu to carpe diem to the lilies of the field.  but collecting those quotes isn't living them (might it be the opposite? depends, i suppose).

and so what i've noticed in the moments when i'm sad or scared about what the future might bring, is that my sadness and fear about a future possibility never once in my life ever made it easier if that possibility came to pass.  i never once got my heart broken, and then thought, "well, this doesn't feel as bad since i spent so much time being anxious about it for the last few months."

on the contrary, if my goal is future happiness, my goal oughta be present presence.  in may, i was crying changing solas' diaper worried that maybe we only have two more months with rebecca 'cause she had that eye symptom.  and first of all, it's been two months since i had that worry.  useless!  but second of all, when i decided in that moment to try to become more present, i noticed that birds were in fact chirping outside of my window.

well, chirping is a stretch - it was crows fighting jays for territory - but it still made me smile to feel that connection to our aerial family.  and then i became more alive to the fact that solas was with me, and alive and wriggling, and successfully pooping.  and i got to feeling positively Good.

and Third of all...well when i leaned into my fear it was waking up on the morning that i'd have to bury my partner and how sad i'd be on that day.  but what might make that day easier (when it comes 40 years from now) would be noticing the sunrise, listening to the birds.  and noticing the sunrise listening to the birds.  and if my practice today is to worry about two months from now, on that hardest day of my life i would be worried about two months from then.  i'd miss the sunrise.  all the times.

i say all of this because it felt better to share.  it felt better, more alive to be clear about the fear and the love that feeds it.  and it feels good, with all the everything else that's going on, to have this moment where those theories that aren't practiced are discarded...and of course it feels easier to do all of it with you carrying this story alongside me.

so.  that's us.  and beyond us, what a week of horror.  i do want to spend a moment just recognizing that the blue community in the united states is at war with the black community of the united states, and that the war is being fought to preserve relative ease for those of us with white skin and absolutely fantastical comfort for the most well-off people in the world.  and that maybe only 10% of police officers are rotten apples slash racist serial killers, and that they couldn't do what they do without the active support of the other 90%.  and that the police in the united states are a reflection of american culture, and no police department could do what they do without the guidance, protection and apathy that we in the rest of america offer them.

don't ease yourself into the cold comfort that you can't do anything about it, my friends.  here's an organization with good ideas (and an executive director that i trust).

and you can pray.  we *must* pray.  the road forward is poorly lit.  or perhaps not built yet.  perhaps we need to build the road, perhaps we need to walk it, perhaps we make the road by our walking (as paolo freire said).  but that prayer *must* be matched with action.  i give you james, brother of jesus of nazareth:

"What does it profit, my brethren, if someone says he has faith but does not have works? Can faith save him? If a brother or sister is naked and destitute of daily food, and one of you says to them, “Depart in peace, be warmed and filled,” but you do not give them the things which are needed for the body, what does it profit? Thus also faith by itself, if it does not have works, is dead.

But someone will say, “You have faith, and I have works.” Show me your faith without your works, and I will show you my faith by my works...For as the body without the spirit is dead, so faith without works is dead also." [james 2:14-26]

sweet Creator
we give you thanks for this creation
for this life
all of it
the bloody confusion
the birdsong
the sunrise
our imperfect lives that end in perfection

we pray for the healing of our sweet rebecca: daughter, sister, mother, lover, friend
we pray for her body to be clear of all tumors
we pray for her treatments to have the best possible outcome
we give thanks for the restoration of her eyesight
and the ongoing health of baby solas

we pray that we might act wisely to call into being a beloved community of all life
we pray that we might act wisely
we pray that we might act
we act, that our prayers may manifest

we witness your fingerprints on creation
guide our hands

we pray in the name of jesus, agitator and healer
we pray in the name of mary, mother and sister
we pray in the name of mary, lover and friend
we pray in the name of brigid, a light in the darkness

we pray to You
the One
to You we surrender
in faith