4/19: Home is where the Art is

hello and hiya.


here are some scenes and updates from the past week...


* update number 0 is that i started this update last thursday (just so you know i've been thinking about you) and then we got caught up in a lovely swirl of house-moving. see, when we got our health insurance, our home was in sonoma county. still technically is i suppose since that's where our stuff lives, and where we vote. our hearts are all over the place.


anyway, our insurance happily paid out what must have been tens of thousands of dollars for rebecca and solas' care in san francisco, but weirdly drew their line at paying for regular check-ups for solas that happened outside of our county of residence.


i was upset! and not because this was important! but because i am and have been awash! for months! in whatever the chemical catalysts are that take regular dudes and turn them into dads -- heroes on a quest to find a villain, a malefactor, a claims negotiator, a Someone that i can then protect my family from. so i called the insurance company with a full head of steam and tried to get my way by plying them with my queer mixture of protective aggression and lovingkindness.


modern quests being what they are, i got referred to a supervisor.


after days of back and forth they agreed that solas could be seen in san francisco, but by then we'd already made an appointment in sonoma county. downtown sebastopol, right down the street from our home/voting station.


i could have postponed the appointment, but then we'd have to wait an extra week to get solas' weight, and you know i wasn't going to make that choice.



so thursday of last week, the whole family got all dolled up and jumped in the station wagon and turned on the AC and drove the hour and a half north to see the pediatrician. and by "whole family" here i mean myself, rebecca, solas and our dear friend brenna who was taking a week-long break from caring for her own family in portland in order to be a full-time auntie with us. this was great for many reasons, not least of which is that it gave our other fabulous, beatific tenders a week off. plus we love her.


our appointment was for 2pm, and at about 1pm we got to the checkerboard of asphalt and verdant green islands that marks medical strip mall lots -- early for the appointment and right on time for lunch. someone (rebecca's voice remains hoarse from the intubation so i'll blame brenna) said, "there's a green space over there we can eat in!"


we trundled over with our baby in his carrier and our food in their climate-controlled bags and our rebecca just walking like it was no big deal and everything right under heaven on this immaculate lawn and started in on the feast. tupperwares with grilled asparagus and brussel sprouts and roasted sweet potatoes. a rotisserie chicken we took turns tearing into. something vegetarian and protein-y for brenna. snap peas and brown rice and delicious salad dressing and fine conversation and then "what's that sound?"


and then came the deluge. apparently, the sprinklers in this particular facility are set to go off at 130. or they're triggered by people on the verge of feeling satisfied. all i can tell you for sure is that the water came from all directions.


and then came us running in all directions. well, some of us. brenna leapt up saying, "get the baby!" as she got the baby, and rebecca was left croaking "i can't get up" as i grabbed the chicken. and then i came back for the asparagus container. and then rebecca's voice broke through my action-haze and i helped her up and out of our unexpected but pleasant mid-day misting.


the food was fine and i don't think solas even woke up from how wet he got. but it was a beautiful moment of things feeling pretty much perfect in the world. these are the things that happen to us when we travel, when we leave the house. this was proof that we had left the house! it was lovely in a strange way.


it was also a moment to appreciate brenna's mother-of-two training. get the kid first! man. i felt like i flunked that test. twice, really. who prioritizes chicken (and then asparagus) over their convalescing wife?



well we laughed our way over to the appointment and here's solas' new stats:


-- he's still super healthy

-- i thought i'd change him while we waited for the doctor

-- he pooped all over the table like it was no big deal

-- they measured his length and i honestly don't remember the number

-- they weighed him and he's 8 pounds! for those of you keeping track, that means he's put on something like 34 ounces in 26 days. which is comfortably beyond the 1-ounce-per-day they hope for with newborns.


the pediatrician (who was lovely and charming) pointed out that this was his 40th week of existence, and that an 8 pound baby at 40 weeks is exactly normal. and that's something to be celebrated, and given thanks for. there are so many missteps available for a wee one who comes into the world at 36 weeks, and it's really clear that this little guy is still riding the wave of your prayers. thank you so much.


after the pediatrician visit, we stopped by our old place to pick up mail and to see how much of an edge it would be for rebecca to walk the 150 feet from the parking area to the yurt, and walk up the 7 steps to our porch, and lay down on our old bed.


and it turned out that none of those were particularly hard for her.




we were very excited. once i figure out how to get pictures off of our camera i'll post some pics of the area, but it's on the edge of the suburbs that surround sebstopol and the rural plots that surround them. so our nearest neighbors to the west are horses...


(there's a joke in there about neigh-bors but i don't care to know what it is and let's just keep moving on, people)


...and the sky is filled with stars and the trees are filled with birds and you can take a little walk in the apple orchard on the land like it's no big deal even though it is Totally a Very Big Deal any time you as a human being get to walk among blossoming apple trees and hear the hum and sense the succulence being drawn into these lovely springtime-fed fruits-of-the-fall.


and so our hearts opened up wide after being in the hospitable and kind but gray confines of san francisco's loving arms.


and so we thought we'd take a little country sojourn over the weekend to see if we could live well out here and it felt amazing and what feels right is that we'll be here while looking for places to open up in santa cruz and so we spent the weekend unpacking and exclaiming over how nice it feels to be home. where the mail is.

* so that's update number 0. update number 1 is that i don't have any new pictures or video to upload at this time, but i didn't want that to stop me from sharing an update.  once more people with knowledge phones come through the temporary-temple-space we'll get more of that stuff up. or once i either find our camera cable or buy a new one.

* we had a date with our oncologist last tuesday, and he said that things are so obviously going well that he's in no hurry to order the next set of scans. he said they typically do a set of scans about 6-8 weeks after beginning treatment with tarceva, mostly to see if it's working. since things are clearly going in the right direction, he's more inclined to wait until 10-12 weeks to get a progress shot of how much the tumors have been shrunk/dissolved/cleared. ten to twelve weeks from when we started tarceva would put us at the end of may or the middle of june.


i had talked earlier about using this upcoming mid-may set of scans as a focal point for our work, but the timeline is getting slightly extended for the greatest possible reason.


one gray lining: he ordered bloodwork done on rebecca to make sure her body is coping with the tarceva well, and the one thing that was off was her alkaline phosphatase levels. i don't know what that means and no one has told us what the potential implications are (the blood work was done after the appointment). but they've adopted a wait-and-see approach with that data. i will let you know what changes if anything does. i'm taking it as a good sign that no one's panicking on their end.


* rebecca was sitting in a chair this weekend with solas in her arms. she stood up with solas in her arms. she walked across the room with solas in her arms, and then sat down in the bed. with solas in her arms.


all i could think was praise be to God, this miracle is unfolding in front of our very eyes!


* brenna has taken the night shifts of watching solas while she's with us (blessings to you and all those tenders who have taken the night shift!), and to increase rebecca's chances of getting a night filled with sleep we pitched our tent outside on the lawn and set it up nice with foam pads and a down comforter and a little wedge thing raising up the body and a bunch of pillows.


and lo and behold her night was filled with sleep! she said once in the night she felt a little "crackle" in her lungs but was able to eliminate it by laying on her back or her right side. so it's not perfect in those beautiful lungs of hers yet, but she's camping!


(soon i will need something Bigger than an exclamation point)


but geez, seeing her not in the hospital bed, and getting into a pup tent like it's no big deal...it's a real Moment it's like watching a sunrise after a night of thunder and rain and the birds singing in the day and you've been walking in that water all night and the mud that was trying to pull your feet off your legs this whole time is now just the earth pulling you into her chest. her precious child whom she loves so much, holding you to her while the sun rises. glory glory be.


in jesus' name -

may rebecca's lungs and the rest of her body be clear of tumors

we give thanks for the restoration of rebecca's sight

we give thanks for the continuing health of baby solas



thank you all for being part of this working of faith, of prayer. we are making a mustard seed of faith, we are prayersmiths.

thank you mary thank you mary thank you brigid




in faith,