hi all --
some quick updates right now, longer ones coming this weekend...
NEW PICS (and a video of solas eating his hand):
i've got some new pictures of the baby, and the mom with the baby, and the family (complete with stuffed animal allies) online at the youcaring site.
the video is here: https://www.youtube.com/watch?v=k6ukZNCvo0Y
and to get to the pics, you need to go to the "gallery" tab and then scroll down to the bottom and click on "show more." i haven't figured out a way to direct-link to the pictures there. perhaps i never will...but the important thing to remember here is that someone gave us a little bear-jacket for solas (complete with animal ears), and we dressed him up in it for his pediatrician appointment and took some pictures and now you get to see them. there's also a picture of rebecca holding him in her new at-home bed. and a video of him fending off an attack from that hand of his that he doesn't know that he controls.
....there's some beautiful metaphor for our lives in there, something about the things that bother us the most really being "of us." someone wiser than i can put a finer point on that one day...
when we first created it, we wanted to keep the number of folks on the list to a small number, mostly just because we felt so fragile about all the news that we were getting in and sharing.
things now feel different, on more solid ground, and so if you know of anyone who'd like to be directly subscribed to the list, please tell them to send an email to firstname.lastname@example.org
rebecca has had a Fabulous week. she's walking from her bedroom to the bathroom and back without a walker, she's sleeping through the night (when we have solas on the other side of the house), and her vision is continuing to improve. last week she said it was 90%, this week it's 95%, and she was able to read one of the beautiful cards we received on her own.
we've had an at-home physical therapist appointment, and when that was over the person said rebecca was doing great and should just keep doing what she's doing. that's the kind of health report we've been longing for, for a long time. she's eating more, and more solid foods (salmon vs. apple sauce) and getting closer and closer to not needing the hospital bed. and she has lung cancer.
...so it's a balance, always and of course that includes right now, of these wonderful break-through moments and this walk of faith through the realm of fear and despair.
i think a big part of what's been going on this week is we've been catching our breath. the previous two and a half weeks have been Such a whirlwind, that we haven't really had the time or energy to really integrate what's going on. part of her is still in disbelief. part of me is still begging for this not to happen.
and so we've been having a lot of physical and emotional progress. the physical progress looks healthy. the emotional progress *looks* terrible, and sounds like fear and agony, but is healthy nonetheless. we're told that jesus sweated blood in the garden of gethsemene the night before he was to die. we presume that he knew that he would live forever, that he was simply passing through a gate from this world to the next, and yet this world, this life, these companions we gather are so wonderful that even the most illuminated of us would just as soon stick around a little longer. even the most dedicated servants of the Creator weep when confronted by death, by pain, by desolation.
so it's okay. even when we're not.
and here we are.
WHERE WE ARE:
we are staying with friends in southern san francisco, and are being physically and energetically nourished by a rotating cast of the most fabulous friend/family/clan of support people that i think has ever existed. and that is a deep, deep gift. i cannot express my gratitude enough, but i can at least acknowledge the fabric of support and giving that is holding us.
WHERE YOU ARE:
we asked folks to limit their communications to us at the beginning because it was such an overwhelming time. i'd like to specifically invite people at this time to drop me a line if you ever have a good moment of prayerful connection that you can relate: whether it's just you sitting on an ocean-bathed rock when the sunset and the clouds and the just-rightness were in alignment, or whether you organized a prayer circle with friends, or just you and a buddy held hands and closed your eyes and joined in the divine supplication.
i know it's happening, and i know it works whether i know about it or not. clearly. it's just a balm on my spirit to hear about these things.
also, i was thinking it would be nice to try to make weekly group prayer circles a thing. the good people at st. columba church in berkeley hosted wednesday night rituals for healing in the middle of lent that were a sweet, sweet nourishment for us in our time of need. if it's helpful to you in terms of connecting to a collective energy, there are groups of people setting aside wednesday nights to pray for this miracle. if you do so as well, drop a line and let us know how it's going.
...i can even try to help spread the word for you if that's an aid at all.
and if there's another night of the week that works better, by all means do that instead!
THE NEXT BENCHMARK:
in 6-8 weeks, our oncologist wants to do another set of scans to see exactly what the progress in rebecca's healing has been. between you and me, wouldn't it be something if all the tumors disappeared by then? that's not how tarceva works, but it's certainly within God's power. so that's our next check-point. from now until mid-May, let's see how close we can come to clear? let's put this mustard seed to work.
"And the prayer of faith shall heal the sick, and the Lord shall raise them up...the insistent prayer of the righteous availeth much." - James 5:15,16
THE LITTLE ONE:
he's starting to look at things. like he can see them -- like the baby-glazed-over sheen is starting to wear off. the blues of his irises are turning a shade darker and looking more distinct from the pupil.
here's a snapshot from his week. my friend wren and i went to the pediatrician's office wednesday. i'd made a 930 am appointment. we left the house at 9 o'clock. maybe a few minutes late. well, okay 15 minutes late but we needed to do that photo shoot once the bear suit was on, right? so we arrive about 20 minutes late. 9:50. pretty bad, but i'm used to it. i check-in, wren sits down, solas eats. the receptionist take our information in that inscrutably bored way that is endemic to doctor's offices, looks us up, and then literally (and i don't use that word lightly) gasps: "oh! a 9 o'clock appointment!"
i'd apparently been off by a half hour in my memory. and 50 minutes off in my arrival.
so we sit down while they see if the doctor has any openings. i delete some text messages. wren sings softly. solas eats. then i get called over. our insurance for things like pediatrician appointments is only good in our home county, sonoma. so we'd be paying out of pocket. how much? something like $350. and we'll have to wait a couple hours at least to get in.
we weren't going to do that. not with a perfectly healthy baby anyway. so i ask, can i just borrow a scale? just to weigh the babe?
i sit down.
a few minutes go by and the side door opens. i'm gestured through, out of the waiting area into the hallway where appointments take place. i'm speaking to some kind of coordinator supervisor person, in hushed tones:
"can you wait until 11:50?"
"my wife's at home, i don't want to leave her apart from the baby that long."
"well if you wait, then we can do a discount on the appointment if you pay cash up front."
"i don't have the money or the time. can i just use a scale really quickly?"
"no, the doctor has to do a full exam."
"i know, but if we can't weigh him here we'll weigh him on the scales at the whole foods, and that's worse for everyone, i think."
"it's just we can't take on the liability..."
"oh! i totally get that. i get that there's all the bureaucrats and the lawyers and the everyone, but right now there's just you and me in this hallway being human beings, and there's a scale 5 feet away."
<she looks at her assistant>
<her assistant looks at the floor>
the supervisor shrugs and smiles and says: "...i'm not even gonna watch."
i hop into the room, take off solas's clothes, he cries like always, i get the weight, we hit the lobby and put him back in his little carrier thing. he eats.
so, it turns out solas was 3.06 kilograms, which is like 6 pounds 11 ounces, which is almost a pound up from last week. bang! baby's getting big!
all in all, he seems to be doing well. we love him very much, and in return he might know who we are pretty soon.
blessings to you all! thanks for your prayers in this fecund time of the easter season, the paschal feast and the full-moon lunar eclipse.
may rebecca's lungs and the rest of her body be clear of tumors
may her vision be restored perfectly
may solas continue to enjoy good health, god willing
guide us to the next temple of the waters