4.17.2014

I can choose









I can walk through the days numbly, or I can choose to keep my eyes and heart open to the bits and pieces.  the unfurling fiddleheads carpeting the forest floor, for instance.  we were looking for morels on papa's birthday, walking in the woods.  we tried so hard to balance the wants and the joys of the day with the challenges and worry that have been our recent reality.  we didn't have the easiest time in the woods, but we muddled through words said wrongly and through frustrations, and we found some good moments.  the toes in sand and water, sunlight dancing on fiddleheads moments.  you can't really deny those moments.  they need to be let in for the medicine they are.

back out to winston salem for a few days~ another weekend of ups and downs, but I stole some moments here and there to sit on the patio on a warm spring night and watch the moon rise full and sweet, casting a beautiful glow over the reading material and yarn in my lap.  another small dose of medicine, if I let it be.  turning in early, solo bananagrams.... a good night's rest.  I woke feeling ready for the big day ahead.  a big procedure, recovery, the seemingly inevitable crash of certain stats following the sedation and myriad other tolls on her body.  but then some calm again.  a goodbye until next time, a return home.

raindrops on solomon's seal, the comfort of my own bed, a proudly handed over work of art as I walked through the door.

french toast with my girl on a sunny spring morning following two very cold nights (I still need to go get the garbage cans, plastic sheets, regular sheets, and trash bags off of the blueberries, strawberries, peach blossoms and apple blossoms...)


and a text coming in with updates from the morning rounds at the hospital, telling me that everything looks to be improving, that she is awake and alert and smiling, that they will move her back to intermediate care this afternoon.  a text that made my heart soar and my shoulders feel a million times lighter than they've been feeling.  oh happy, happy day. thank you, thank you, thank you.


yes, I can choose these things.  I can choose them, focus on them, and allow them to fill me up.  that text alone will get me through just about any crap the day (week? year? lifetime?) wants to throw in my direction.  yes indeed folks, it is a bright and sunshiny, happy day.

4.14.2014

numb only goes so far


these days
oh, these days
as they go on and on I find myself
inhabiting a certain place
a numb middle ground of sorts

I go there feeling vulnerable,
too tender for the rawness of fear or even the
delicious elation of relief

I feel brave in this middle ground, I think
and yet I'm cowardly there, too

but I am under no illusions
I know it is a false place
a self-protective destination
that I cannot visit forever

indeed I feel it slipping, now
I feel reality and all its baggage
knocking
softly, but persistently
and I know I can't
really hide away, can't really
protect myself from pain and worry and
shouldn't deny myself
the lighter, sweet moments that slip in
from time to time

sometimes I ease myself in
piece by piece

take my mind, for example
it can wrap itself all around the dialogue with the doctors
find safe haven there discussing central lines and fluid boluses,
atrial fibrillation, acute interstitial pneumonia, creatinine, and platelets
it is well acquainted with the feel and smell of blue latex-free nitrile gloves, size medium
with the smell of the hallways, the elevators, the rooms
a mix of sanitizer and barrier ointment, alcohol wipes and worry
hope and sterile gauze and leaking chest tubes

it is, of course, my heart that forgets
the middle ground
it is my heart that goes bounding
into the room ahead of my body and
well before my mind
it leaps right up in bed with her
eyes wide open, it stares her in the face
seeking recognition in her eyes and in her heart
it picks up her hand and strokes my face with it as if
the gesture were her own

it tends and wipes with cloths
sometimes cool, sometimes warm
it kisses and whispers encouragements
it knows where I stand, truly
it sees my middle ground for the game it is
it acknowledges the vulnerability and that
I'm thisclose, always, to spilling over and under
and inside out

and I know
despite the game face and the
growing medical vocabulary
and the ability that gives me to
make sense out of things....

I know that when it
really, truly,
comes down to it
that it's the other
it's this big, sloppy, eyes-wide-open
heart of mine
that calls the shots









4.10.2014

there and back again

 (coffee and bagel breakfast at the microtel inn)

 (pumps, lines, oxygen and such)

(Claire's art work cheering up the walls)

 (working it all out with pen and paper, and enjoying a sweet gift from a friend)

 (takeout burrito and magazines in bed)

 (jewelry shed for the night- my mama/child necklace and lucky ring, hotel key)


 (morning light, a new day)


(making happy dishcloths, her catheter bag and 'pleur-evac' pump always hazy in background)

 I never imagined it'd turn into such a roller coaster.  today is her 41st day in the hospital, and all but four of those have been spent in the ICU.  she is back there now, the ICU, and has been since Sunday.  I won't go into quite so much detail as I did with the last post, mostly because I've already written about it so much elsewhere and I just don't have it in me, but the somewhat short version is as follows:

I went to see her last weekend, she was in intermediate care.  Saturday night things started looking a bit weird again.  heart rate high, pulse high, fever spiking, a bit more confused and agitated than she was earlier.... things settled a bit by the time I left, she'd been given some beta blockers and atavan.  Sunday morning, she was unresponsive again.  CO2 had gone way up and other concerns (fever, etc) still there.  CO2 not resolved with bipap so I followed as she was moved back to ICU.  reintubated.  a new central line.  an arterial line for continuous BP monitoring (it was bottoming out again).  it was looking like she was septic, though they couldn't find the source of the new infection.  multiple new meds started for infection, BP.  as she came out of sedation from procedures she began to fight the ventilator, but things were looking relatively stable before I left.  I got a call an hour into my drive.  found a new pneumothorax, need an additional chest tube.  also- due to how much she was fighting the vent, they paralyzed her by running a drip of paralytics and sedatives.  scary shit, to be blunt.  but it made sense, I could see that.  a call to one of the residents later that night revealed some unpleasant news about her kidney function and liver, also heart concerns.  a soaring heart rate that didn't respond to shocks (wow, what? shocks?!) so they started a drip of amioderone.  it helped, things were stable.  thanks, of course, to numerous machines and drugs.  that is when I started to get scared again.  worrying that the rest of her body just didn't have enough fight left in it.  a decision to go back.  a day spent in worry.  news of a family meeting awaiting my return to the hospital on Tuesday.  after last time, the worst day ever, the words 'family meeting' terrify me.  thankfully (oh how thankful!) this time it was more along the lines of  'this is where we are, do you have any questions? and where do we go from here'.  also promising was that things were pretty stable without as much medication and organ functions were improving at a good pace.  whew.  such a relief, because I had, in the back of my mind, begun to think about those scissors again.

went in to see her, she looked good.  peaceful, really.  they had finally found her happy place of calm and awake.  thank you teeny tiny drip of fentanyl and propofol.  I had put in a request for no more benzodiazepines, if possible, before leaving over the weekend.  nurses backed me up and it was heard.  and it was making a difference.  she seemed stronger, better.  hadn't passed a breathing trial that morning because her CO2 went up again, but still, it was a much better picture than a couple days prior.  the following morning (yesterday) they extubated her again.  I wondered (asked several times, really) about a blood gas level, and why none was taken yet.  they said they'd be watching her closely.  she did great all day.  they removed the arterial line, the central line, she continued looking better and stronger.  I brushed and re braided her hair.  she seemed in better spirits, like she actually believed she was getting better now, instead of telling me ominously, as she had a week ago, not to hold my breath.

before I left I asked again about the blood gas, and about a bipap at night.  my concern was finally heard and orders were put in for both.  I felt better about leaving with that in place.  a call last night to check in on the blood gas revealed that indeed her CO2 was high again, but that the bipap should correct it.  a call to her nurse this morning (about an hour ago) revealed that she had just been reintubated.  O2 was fine, stats overnight were fine, everything else continues to look alright but her CO2 was tricky and her breathing was more labored and shallow.  of course it was.  she has extremely de-conditioned lungs.  lungs that can't practice and build up their capacity to breathe on their own again if she stays intubated.  I asked about a tracheotomy.  I am hugely in favor of it.  we've discussed it numerous times over the last month and I really think (no, I know) it is time.  past time.  it is the only way to baby her lungs back into working on their own, since with it in place she can be put on and taken off the ventilator easily and as needed.  a bit at a time, not this all or nothing that her poor lungs can't handle.

so.  I'm a bit fired up right now.  waiting to talk to doctor after rounds and planning to be pretty aggressive asking about tracheotomy and more.  the longer this goes on, the more I see the value of having an informed advocate there for her as often as possible.  and to be honest, I want it to be me.  and it has been as often as possible, and it will be again soon.

for now, a couple days of sunshine and gardening, meals and laughter with my girl and a vague and almost palpable sense of normalcy.  with calls regularly put in to the nurses and doctors, and hopefully just a minimal bit of shaky hands and heart.

and maybe even a post or two about other things, like the garden that is coming together or the children's swap that Claire is participating in.  happy things.  spring things.

all in time.






4.04.2014

on hope and gratitude



(neither of these pictures are recent, they just both strike me as hopeful)

I should start by saying that my mom has improved.  that the end of this story is happier than the bit that follows.  but these harder parts, well, I need to get them out and try to make some sense of them.  it's not my typical writing in this space, all of this intensely personal stuff of the last few weeks, but it is what it is.  it is my 'right now' and so it's been all there is to say.  hopefully, not for too much longer.  but for now, here goes.

a week and a couple days ago, last Wednesday to be exact, was most definitely the worst day of my life thus far.  we'd been muddling through the murky, roller coaster days of my mom's hospital stay with no big changes to speak of but plenty of hope that it'd come soon.  it just had to come soon, her improvement.  well.  that Tuesday had been a very difficult day, one where her needs were looking like they were heading down the path of exceeding what the ventilator could do for her.  which would clearly not be compatible with life, not with her very sick lungs.  they weren't sure what was causing this sudden change in her oxygen needs and respiration, so they ordered a CT scan of her lungs to compare to one from several days before.  Wednesday morning I anxiously awaited news of the results from the doctors' morning rounds.  my Grandma Sandy texted me to say instead of passing news on to me as she usually did, they had suggested setting up a family meeting and could get me in on it through a conference call.  I found that a bit unnerving, and waited for the call.  while waiting I saw that a hawk had gotten one of our chickens, Rose.  her feathers were everywhere and I couldn't help but wonder if it was some sort of bad omen of death knocking on our door.  when the call came the doctor went about explaining that her pneumonia (now thought to be MRSA pneumonia and affecting both lungs) which had progressed to late-stage ARDS had begun to rapidly progress into pulmonary fibrosis and a great deal of interstitial alveolar swelling.  essentially, her lungs were largely incapable of receiving the oxygen they needed.  he explained that prior courses of steroids and other meds hadn't changed the course of her disease, that her lungs, having lost so much of their elasticity from the inflammation and fibrosis, couldn't handle higher pressure settings on the ventilator should she start to require them, and that she was in an extremely dire, acute, and critical state.  my hands shook as I tried to write notes down in the notebook that was supposed to have been my new personal calendar but early on in March had instead turned into a chronicle of her days in the hospital, which meds she was on, what her ventilator settings were and the names of nurses she had, etc.  I couldn't hear very well the other voices in the room, but knew my grandfather, his wife, and my mom's husband were all there.  mostly I just heard the doctor since he was sitting right next to the phone.  what I did hear absolutely clearly though was when my grandfather asked, in a broken and shaky voice "is she dying right now?", essentially giving voice to the question we were all asking in our minds but too afraid to let out into the world.  I sat completely still, jaw clenched, waiting to hear the response.  it came.  "in the next 2 or 3 days, no. but we will have to see how she responds to the steroids to know which way it will go. she hasn't responded to them in the past, but we will see."  I felt those words as simultaneous heavy blows to my stomach and chest.  the family coordinator nurse (someone I'd not even heard of until that day) called me and asked if I could get in touch with my brother, that he should come.  she also asked when I was coming back and whether or not my mom's brother and mother were coming.  I texted my employer and told her simply that "she needs to come in, I am leaving now." to let her know that yes indeed I needed coverage for the day, and for the rest of the week.

and then I tried to figure out how to pack for a trip to tell my mother, my best friend, goodbye.  Mike called his folks to let them know what was going on, careful to walk far away from me as he talked, as if I didn't know how bad the news was.  as if he could somehow protect me from whatever may be coming.  I knew I couldn't drive, so we were all three readying to leave for an unknown length of time.  I moved slowly, took a walk around the block when I started to feel like I was suffocating in the house and cried as I talked to a few neighbors.  I felt lost and like I didn't know what to do next.  toothpaste?  sure, maybe?  I don't know.  pajamas?  okay.  how about miracles, though- can we pack those, too?  I sat on the couch and told Mike that I felt like I was on the precipice of one of those 'before' and 'after' times.  as though that was my last time in my home before saying goodbye to her and ever after things were going to be completely different.  deficient in the worst way possible.  I wondered about my strange impulse weeks ago to take home the pages she'd scribbled on when she was still awake and writing on a clipboard.  pages where she'd written she was scared, wondered where she was, asked for Claire, and apologized to me for taking up all of my free time (yes, really).  I wondered if somehow I'd known those words were our last communication, something I'd briefly given thought to that day but pushed aside because I thought it was ridiculous.  during the two hour drive my mind kept making circles around the impossibility of not having her.  of having my daughter grow up in a world without my mother and perhaps not remembering her.  of all of the mothering and grandmothering that was going to be robbed from her.

we arrived in town, checked into the SECU Family House (an amazing nonprofit that provides affordable lodging and so much more for patients and their families) where I'd been staying off and on, and I drove over to the hospital.  her breathing was more labored than it had been over the weekend and she was still unresponsive, and the mood had shifted, but her numbers were looking a little better than they had that morning and I had some hope.  my brother got in late that night and, after putting on the gown and gloves we all now had to wear since she'd tested positive for MRSA, took two steps into the room and collapsed in a chair, sobbing.  after a half a minute or so I told him to buck up because she could probably hear him, and then took him on a tour of the machines and tubes and such, orienting him to this new version of mom.  we sat there together, with his girlfriend, for a couple hours.  there was a midnight round made and we stood in the hallway listening to the kind doctor telling us they were doing all they could and were considering sending biopsy slides across the country to "see if there are any heroic measures we can take to save her life".  again, it was put into perspective for me.  I asked if there was another road to take should the steroids not help and he said there wasn't one that they knew of.  I appreciated his candor, and his compassion.  I stayed a little while longer and then drove back to the family house, saying aloud to myself as I drove "my mother is dying".  I slept very little that night, waking from dreams to realize only seconds later that I was in this terrible vigil, that my best friend was fighting for her life and that she would likely slip away, still unresponsive, without my ever getting to see her eyes or hear her voice again.  that night I decided to find a pair of scissors in the morning to bring with me to the hospital, so that I could cut a length of her long red braid.  I thought about which articles of her clothing, which trinkets and such, I'd want to obtain for myself in an attempt to hang on to the physical parts of her.

in the morning Sandy texted me that she was continuing to slowly show improvement, but that the attending cautioned her to be very cautiously optimistic, because the steroids, especially the hi dose rounds, often showed an initial spike of recovery before the patient came crashing back down, unable to maintain that improvement.  I felt hopeful but also strangely protective of my heart, which had spent the last day so tightly wound with razor wire that it felt it too risky to breathe deep, too constricted to hope too much.  but, I did leave for the hospital without the scissors.

she looked a little better.  though her reserves were so low that any time they had to turn her or anything her O2 saturation would drop, her breathing rate would skyrocket, and they'd have to medicate her back into a calm state to protect her lungs.  I'd watch the numbers, worrying with each drop that it was that steroid high starting to crash down.  I had to leave the room for the first time ever.  I found a dark and vacant waiting room a few floors up and sat in the corner crying.  I needed her.  needed to hear her voice so that she could coach me through this as she had for decades with all of the other major events in my life.  instead I called my mother in law.  we spoke for a long time.  cried.  I told her I was worried about Claire.  should I bring Claire in to see her like this, if she didn't make it?  would they let me bring her in once my mom was gone, and extubated, so that her last time seeing her wouldn't be too strange and scary, but somehow peaceful?  would she remember her as she grew up, or would the memories of a four year old not be quite strong enough to stand the test of time?  and what of her hair?  should I go ahead and cut it?  and oh wouldn't it just be wonderful if she gets better and then that's just a hilarious story I can tell her later on.... how I nearly cut off a ton of her beloved hair?  after the call, and a fair amount of time spent just resting in the dark corner, lulled a bit by the hum of the cool and slightly vibrating pepsi machine, I myself 'bucked up' and went down to join other family members in another waiting room.  things were looking good, they said.  I was relieved but had that pinching feeling of fear in my heart, the one that wouldn't let me open all the way up to hope.  not just yet.

another day of rounds, and then two- with continued improvement and the beginnings of responsiveness.  doctors saying they were pleased, amazed even.  a stop to the pain meds and a huge tapering back of the sedatives, now only used when absolutely needed.  seeing the recognition in her eyes when I spoke to her, seeing her try to turn her eyes towards the photos I was showing her, shifting her head ever so slightly towards the sound dock when her favorite songs were playing...  visits from her brother, her mother, her son, her daughter, her father, her stepmother, her husband, her cousin.  continuing strength the next day and the next until finally, after passing a breathing trial on Monday morning they said they'd try to extubate her.  in the end it didn't happen that day.  they missed the incredibly brief window between awake/alert and anxious (even though I'd warned them it'd be brief and tried to clue them in on when it was coming and that it was the tubes causing the anxiety anyway so yes please just get that thing the hell out of her throat!) and ended up giving her some sedatives again.  it was frustrating, but I understood.  the lungs before anything else.  must protect those lungs.  Tuesday morning I came in anxious to see if she was having another breathing trial, worried about any setbacks, but there she was, just finished up with another passed trial.  the doctors came around shortly thereafter and debated whether or not to extubate.  said they were on the fence.  said her case was 'tricky'.  indeed, it is.  but it was nearing three weeks of her being intubated and I feared that if they didn't get off that fence we'd miss another opportunity.  the attending, thankfully, with a nudge from the wonderful respiratory therapist who'd been there with her more often than not, pushed the team to give her a try.  at least give her a try.  I was so relieved but worried it'd play out like it had the day before, wondering what they were waiting for.  minutes later the respiratory therapist came in (he, it seemed, was not going to let the opportunity slip by again) and I held onto her feet as she took a breath and he pulled the tubes up and out of her airway.  a nasal cannula was immediately placed on her and it was like looking at a whole new person.  a person whom, just days prior, I'd thought I was going to have to figure out how to let go of.

she enjoyed nearly five hours of relative facial freedom before they started to worry about her CO2 levels.  a blood draw confirmed her CO2 was elevated and ph a bit off and so she had to wear a bipap with full facial mask for the remainder of the day and night.  until she was able to breathe more deeply and cough effectively on her own, they'd have to monitor her blood gases.  she did not like the mask.  I think it made her more anxious than the ventilator had.  when I returned in the morning the nurse was concerned about her CO2 because she looked so sleepy, but I went in to see her and asked her if she'd been able to sleep (no) and if that was because of the mask (yes).  I told her nurse that I thought she was just tired.  he asked respiratory if she could have a break from the mask and they agreed, though said it'd likely be brief.  she was clearly more comfortable without it and for the first time in weeks I was able to communicate with her a bit.  she still had no voice, that will take a while, but she was trying and I was listening.  I was most definitely listening.  just a bit later I asked about the percussive setting on the bed that helps to kind of shake things up a bit in hopes of helping patients cough up secretions.  they okayed it and it helped her cough and then lulled her to sleep.  she woke up looking somewhat rested and to everyone's surprise she didn't need the bipap for the rest of the day, would only need it at night, and it turned out to be quite a big day.  bedside physical therapy, a swallow test (not passed, not yet), a feeding tube placed in her nose (yikes!), X-rays.  all of which I was right there for, with the exception of the X-rays.  talk of her improvement, murmurings of being moved out of ICU soon.  worlds different from a week before, which had been the day of the conference call.

she was in and out of a state of confusion and disorientation, and understandably so.  she seemed a bit miffed by the fact that we were all so excited about 'how well you're doing!!' while she was actually feeling downright shitty.  she let me know that her lungs hurt.  seemed worried that we all thought she was better but she could feel otherwise.  I explained to her the condition of her lungs, and how sick she was, though I'm saving some of the stories for later.  I am so incredibly relieved that there is a 'later' for her, for us.  she also seemed to want to be doing 'better' with everything.  with the swallow test and the PT, the communication, etc.  I told her no one expected her to do anything more than just rest and heal and to take her time.  she got agitated about being in bed, about everything, and told me she needed to do something.  I told her I could see that she wanted so badly for her body to be able to do things that it could not yet do, acknowledged her frustrations and fears and alternated between holding her hand and giving her space as her needs shifted moment to moment.  these were strange waters but I was so deeply grateful to be mucking around in them with her.

I left.  left town, even, and headed home for a couple days.  Mike's mom was in town by then, she had been for a couple days already, to be an extra adult around the house and help with Claire while Mike was working and I was away.  I came home to a warm dinner plate and family movie night.  yesterday the three of us girls took a trip to my favorite nursery and saw to some retail therapy of the plant kind.  it was in the mid 70s and perfect for working outside in the garden when we got back.  hands in the soil, bee-watching, exactly the kind of day I needed.  there has been good comfort food, some rest, some bananagrams, and good conversations.  today I bought a couple bouquets of tulips at the grocery store, feeling that there is much to celebrate and be thankful for.  tomorrow morning I'll go back for the day, and am excited to see her in her new room, a step-down room off of the ICU floor.  I'll bring along the banner that Claire and her nana made for my mom, along with photos of Claire holding it up.  I know by now not to have expectations, but to just be grateful, and go with the flow of whatever kind of day it is.  but.  but, my heart is now open to the idea of hope and possibility, knows a whole new depth of gratitude, and indeed is bathing in it nearly every minute.


3.24.2014

small




there is immense comfort in the small
in the taking of things one-at-a-time and
piece-by-piece

in the slowness of ritual

the simple act of noticing individual sounds
when so much else seems like an
endlessly reverberating clatter of
cutlery on a tile floor
has alone brought me so much peace

the joy of the first dandelion,
the way it's soft golden petals are so striking
against the deeper purples of her clothes
of her just-can't-take-it-off dress

and I get that, too
the lure of the comfortable things
the want to not let them too far out of reach
if that dress makes some part of you feel whole and happy, baby girl
well then you keep on wearing it
every. single. day.

just like your mama keeps on
drinking her tea and
breathing deep and
listening to the voicemail from her own mama and
staring at that same picture of her own mama and
remembering to notice
that birdsong
that blue sky
those daffodils
and on and on and on




*went to see mom this weekend~ still not very much change, still working on finding the right balance of meds so that she is pain free (still has chest tube in place following biopsy, should be removed in next day or so) but not sedated. MRI today to confirm her general unresponsiveness is pharmacological and not physiological, results to come. quite sure it is just from the cumulative stacking effect of all of the benzodiazepine sedatives she received for a couple days in a row following biopsy, which were needed to keep her calm so that her stats remained stable. she is now able to maintain a steady blood pressure on her own, so that opens up the door for new meds that her body couldn't handle before. biopsy largely inconclusive, and they aren't sure what the underlaying cause was that lead to initial pneumonia (speculate possible bad case of H1N1 type flu), but she is now basically working through the hump of Acute Respiratory Distress Syndrome (ARDS), they are monitoring the inflammation in her lungs, and working to keep her comfortable while her body heals. today is her tenth day being intubated, and they've scheduled a tentative tracheotomy for Wednesday in the (probable) event that she is unable to wean off of the ventilator before then. it will ease the transition off the ventilator and make it so that she doesn't have to have all of those tubes down her throat~ her face will be free from tubes and such, which would be a big step towards comfort. thanks for all of the continued love and support~






3.20.2014

the great divide


driving back from the hospital early this afternoon, the first thought to cross my mind when I saw the mountains was "I'm almost home".  but before the thought was even complete I realized it didn't feel whole and true.  because there's this division regarding what home means to me right now.  there is my physical home, my home with my people, the family I've brought into my life and helped create.  the typical adult version of home.  but then there is the other home as well.  the one measured by my proximity to her.  to my mom.  usually these days, it's pretty clear which one is truly my home now.  but at the moment, not so much.

a sharp, stabbing exhale of regret, a sense of leaving home hit me hard as I pulled out of the hospital parking deck today.  and yet a deeply calming inhale of the comfortable home I left behind greeted me as I pulled into town this afternoon.  into our neighborhood.  back into the day-to-day world that extends beyond 8, 10, 12 hours spent sitting in a chair in the ICU holding my mom's hand, waiting for her to stir, to open her eyes, to squeeze back.  to anything.  indeed, there is a divide.  a grey area of where I want and need to be right now.  my disappointment upon getting to her Tuesday morning, with books and pictures and photos and music ready to share and help her through this all tucked away in my backpack.... and realizing (again) that the picture in my mind was not at all the picture of reality....  that was hard.  one of those lessons in letting go.  let go, let go, let go.  and trust.

so I sat.  I took it all in and tried to make sense of it.  saw the machines and tubes for the wonderful medicine that they are and gave thanks for them while hating them all the same.  more than anything I just don't want her to be afraid and in pain.  but I have to release the idea of me having much control over that and just be with what is.  two days passed, her hand in mine as I sat reading next to her.  I'd talk to her, rub her feet, ask the nurses lots of questions.  advocate for her as best I could.  I admit that in my mind I'm her best advocate, whether that's the reality or not.

so.  two days as such.  then this morning, some stirring.  just slight.  but enough for me to have no doubt.  I knew she knew I was there.  I talked to her more, so much, for hours.  I stroked her forehead, checked and then double and triple checked that her long hair wasn't tickling her nose or caught in any tubes.  I switched from rubbing her hand to running my arm under her hand over and over as though she were rubbing my arm.  I thought that'd be comforting for her, maybe feel good to in some way have it feel as though she were the one doing the comforting.... I don't know.  it just felt right.  I hooked my iPod up to a little sound dock I'd brought and played some music I knew she loved.  Eva Cassidy, Etta James.  I realized that I'd listened to the same Eva Cassidy songs while I was laboring.  and again there was that connection.  that generation-to-generation time-surpassing, cradling connection that hit me like it did when I saw Claire's name scribbled across her clipboard that first time I went to see her after she'd been intubated.  I still don't have what I feel like are the right words for it.  but shortly after that hit me I felt it.  the rising, splintery knot moving slowly up my throat.  the one that threatens to turn into that stinging sensation midway up the nose, that gives way to the burning behind the eyes right before they let lose all of the emotions that have been safely stored away in there for a good while.  which isn't to say that I've held myself back from feeling all that I have been, because I'm not.  but maybe in the hospital, feeling empowered to care for and look out for her, I had been pushing it aside more than perhaps I should have.

for a minute, I felt broken.  I knew I had to leave shortly to get back to get Claire and go to work.  that I'd come back as soon as I could but dammit the rest of life just refuses to stop even though it'd be immensely convenient for it to just halt for a while, until we get other things figured out.  the wanting to be there when she woke, for her and for me, and the pain of having to let that go when it felt so close...... it was heartbreaking.

I safely packed the mass back into my throat, coaxed away the nagging tickling sensation in my nose and cut off the flow.  for I needed to get it together and love her up as much as I could before getting on the road.  plus, I find it much better to be together while listening in while the docs do their rounds than to be a shivering pool of sorrow in the corner.  I stayed a bit and spoke with the doctors, spoke with my mom's husband and my grandparents, hugged the CNA, Verna, who had come to be such a comfort to me, and got on the road.

and so we wait.  wait for pathology to find an answer from the biopsy tissue samples, wait for the right treatment while guessing at others (what kind of pneumonia? is it histoplasmosis? etc? etc? etc?), watch the X-rays, watch as they search for that elusive balance of pain meds and consciousness.  wait to get back to her side.

and just in case she wakes up more fully before I'm back, I covered the television screen hanging from the ceiling above the foot of her bed with photos (Claire, me, her mom, the beach...) and pictures and paintings of Claire's.

and so, I left my mark.

3.17.2014

off to hold her hand



in the morning I am off to be at my mom's side for a few days.  to hold her hand.  to try to soothe her before a lung biopsy that is coming tomorrow afternoon.  to bring pictures drawn by the girl who has so clearly been on her mind during these scary and harrowing days.  to bring some of her favorite music.  to read to her.  to just be.  to advocate for her.  to ask questions for her, express concerns for her.  to love her.  to support her.  to mother her.  to try to express to her what I know can't be expressed in words.  that her heart and mine are together and always have been.... that I am here and that the love and devotion and concern I have for her, I feel for her... is immense.  I am banking on it also being good, strong medicine.  for us both.