HOW OUR BLOG BEGAN, in AUGUST 2010: As many of you know, Phil has been struggling with a very complex series of neurological issues for about 5 years. This past spring, the issues became especially intense as a result of an unexpected cognitive decline and a fall on May 15th that resulted in a head injury and further decline. And then, on July 16th things catapulted to unbelievable, as Phil suffered from a severe "electrical storm" in his brain that essentially created a status of brain death for two full days. Inexplicably, the very morning that neurologists and other medical team members were planning removal of life support, Phil began breathing on his own and his brain waves returned to a stable, while still abnormal, level. Since then, each day has been a unique journey. And while he and his body continue to demonstrate a will and capacity to live, he continues to have severe deficits and it is quite uncertain as to the path he will take. As loved ones close in can attest to, it has been tricky to keep up emotionally with all of his changes, and provide the needed support. We can only imagine the hard work Phil has gone through as his brain has taken him through such roller coaster experiences. It is our goal here to keep family and close friends apprised of Phil's ongoing story, and to build connections that honor him.

AND THEN, SEPTEMBER 11, 2010....Dad's remarkable journey alongside us culminated in a gentle, generous death.

And so, my goal here now as his daughter is simply this: to record snippets...pieces of his life that my memory offers back to me, pieces of myself as I learn to live without a dad. I hope all who meander by find life, and hope, and peace.

Saturday, September 25, 2010

i get a lot more than just coffee tonight

okay so, dad, it's been two weeks and sixteen minutes since your time of death was announced.


i'm glad we're not burying your body until November.  gives us time to adapt, in stages.  and how unbelievably grateful i am that we can honor you at arlington national cemetery.  our nation's capital, the place our whole family feels is a bit like home.

*          *          *          *          *

tonight i'm sitting at my friend's christian-ish coffee shop, elevate.  her young friend nate is singing the blues on the coffee shop stage.  this one song has four lines, i think, or maybe it's actually three, do they call them stanzas? -- that just keep repeating themselves, over and over and over and over.  which is nice for me because eventually the words cut through the fog and i begin to hear what's being said.  and then i discover i like what's being said.  and then i get to write it down.  and then i get to hear it again.  by the time nate's moved on, i know what it is about the words that work for me tonight.  repetition is nice that way, it buys you time.

what am i supposed to say
when the best of me was always you

what am i supposed to do
when i'm all choked up and you're ok

i'm barely breathin'
i just pray to a God i'm not quite believin'

i know the song is about breaking up, a guy and a girl, and i'm not sure what's going on with the praying / not quite believing combo.    but it comes over me, tonight, that these are the sensations of loss.  not all of them, for sure, but some of them.  and loss, in its many forms, always sings a similar sad tune.  lovers. dads. a child, a childhood dog, a lifelong friend.  the strands of loss are universal, i suppose it could be said.

and while the words are not a perfect mirror for me tonight, since i get to hear them over and over and over again, i begin to love the chance i've been given to contemplate the parts that reflect the bits and pieces.

some of my best was embodied in you, dad.
the senseless crying sessions have started, dad, even when i know full well you're more than ok.
ok so yeah sometimes with the crazy tears, they do have a way of getting in the way of the breathing. 
and yeah, i'm not quite sure what's going on with the praying / not quite believing combo, but i'm sure i could do
more of the one and less of the other.

goodnight, dad.
goonight, friends.

Friday, September 17, 2010

SEPTEMBER 17: a fitting tribute to a godly man

oh my goodness. 

how to summarize the life of a man in a service that contains just sixty minutes of time?  how to summarize those sixty minutes here?

*               *              *               *               *

ok so i'm listening to daniel's audio recording of dad's service to try to snag a piece of it to share with you.  to get some sort of focus, some sort of place to begin.

i'm following along with pastor ron's warm welcome, then pastor short's inspired opening prayer.  so far, so good.  i'm catching a sense of where i might want to go.  once daniel can show me how to rewind his fancy program, i'll be able to roll up my sleeves and get to work.

and then, pastor short's prayer is over.  and the long pause begins.  at first i'm thinking we've arrived at the obvious, necessary quiet as one speaker steps away and the next walks forward to begin.  but the long pause continues.  and continues.  and continues.  i notice the silence gradually, as at first i'm filled with my meandering thoughts, this new insight i'm discovering as i consider what i've just heard, in these moments that have passed.  poetry is hidden within every heartfelt effort to honor a man.   in time the silence overtakes my thoughts and a sense of immediacy strikes.  i speak to my mind, come on karen!  you were there!  you can do this!  remember....what comes after the prayer?

and now i remember.  the air force honor guard.  and all of a sudden, it's happening again, in real time in my mind, as the silence continues.

i see eight men march up the center aisle of the chapel, slowly, heads held high. their steps are crisp, their uniforms a picture of perfection.  15 steps and they arrive at the front on the chapel.  in a single smooth motion all eight men stop.  then turn to their left.  five steps more and they are at the foot of dad's casket.  the four airmen on the right begin their steps to align themselves behind dad's casket.  the four on the left begin their steps to align themselves in front of dad's casket.  somehow, my mind has skipped a beat: now all eight are facing dad's casket. it happened, dreamlike, through some sort of secret language these men share; with one simple, crisp command each of them know how to move their legs, their torsos, their arms, ther hands.  and what about their heads?  well their heads, they never move.  but always they are balanced beautifully, setting the tone of their bodies' entire posture: not forward, not back, not up not down.  just perfectly centered.  it's the only message the military knows how to send: singular focus, never waver, always calm, always sure.  dignity, respect.  awareness, gratitude for those who have come before.  faithfulness to their fallen.

and now the flag.  they pick it up and begin the most elaborate ceremony i've ever witnessed in my life.  as a child, dad taught me and my sister this cool folding thing.  we folded anything we could get our hands on this way. although sheets and towels are always fair game, my baby doll blankets work best for my little fingers.  and, clearly, most worthy of the time it takes to do it right.  i love to guess at the perfect place to create the folds so that my finished product is always the proper size.  and then creating the triangle:  once i get the first fold right, the rest is easy.  slow down, i say to myself, and be a little more careful.  never rush or it will look sloppy in the end.  flip over, flip up, flip over, flip down.  no matter how slowly i go, this part is always over too soon.  i think it's really my favorite part.  ok, looks like i've done it right so far, i have a perfect triangle without a single lump.  and now i tuck the blanket's excess edge back into my bundle.  how is it that there's this perfect little slot that fits just right the length of the blanket i need to tuck away?  keep it slow...if i speed up now, i'll just have to pull it out and start the tuck again.  i learn to pull and straighten kind of in one smooth motion, so the edges are sure to lay flat.  and now, to top it off, i place my hands, one on top of my triangle, one on the bottom, and i just kinda pat it.  pat it here, pat it there.  and then....well then, i'm off.  off to my next girlish adventure.  i know this thing is special, this cool folding thing that dad's taught me and my sister to do.  and every time i do it, i do it purposefully, carefully.  sometimes i feel impatient inside myself, because it's not like me to be slow doing anything.  but somehow, i know it's just the way it's done.  but now, i'm finished and i'm ready to run.  i never stop to ask dad why to be slow.  and why a perfectly smooth triangular bundle is so significant. 

now i know why.  because it becomes the most beautiful, precious gift the military knows to give the widow of a man who has has served his country well.  words cannot describe.  my eyes can only shed their tears.

and now i hear the tap of the shoes as the airmen turn and march out the door.  click, click, click, click.

and now the guns, saluting dad.  one.  two.  three. 

and now the trumpet begins.

i sing in my heart the words that closed every girl scout meeting i had as a child:

Day is done,
gone the sun,
From the hills,
from the lake,
From the skies.
All is well,
safely rest,
God is nigh.

and now, the celebration service begins.

*               *              *               *               *

whew.  if we could have all put the day on pause, we would have, each of us, right then and there.  and we would have gone home, kissed the ones we love, and thanked the good Lord for a day well done. 

perhaps that's what we'll do tonight.

all is well, safely rest.

love forever,

Thursday, September 16, 2010

hospice asks some really cool questions

the first morning after we placed dad in hospice, i woke up in a frantic place.  i knew i needed to get to dad fast.  once i saw him safe and secure at the ryan house, i figured i would be able to regroup and keep my already elevated level of panic from escalating out of control.  (remember the word i used to describe a daughter helping to take her father away from intervention settings and into hospice?  DAUNTING.)

so as soon as tim and i get in the room, i immediately feel better.  but not all the way better.  it's a lot, to force your body back into a calm, cool rhythm after waking up to those crazy anxiety sensations.  so i sit down, we say hey to dad.  he's able to vocalize, but he's not able to follow conversation clearly.  so i'm still feeling uneasy, not sure how to settle in. 

then i look at dad's bedside tray.  i discover one of many ways the ryan house tells their patients and their families that they care: the form they place on a bulletin board in every patient's room for all the staff to read.  i grab a pen, and get started.  it isn't long before i find my rhythm.  a gentle way to begin the process of re-visiting the things i love about this man who will soon be leaving me behind.

by the time i've come to the end of the page, i see him clearly again. he isn't just this sad, sad, suffering soul.  he isn't someone who has to be defined by his physical diminishment.  he isn't a head injury. or a dementia patient.  or, even, a fascinating medical mystery.  he is my dad.  a man who loves marie calendar pies and combs his hair to the side.  this is, i think, the moment when i realize my very sick father has this unstoppable, signature sparkle. all of a sudden it's something i deeply hope for: that his twinkly smile stays until the end.  it's been awhile since i've hoped for something so simple.

i soak up this crucial thing i'm doing here beside dad as the moments pass.  and my body begins to return to its normal place.  in trying to capture dad, line by line, for all the people who will give him love and care during the last days of his life, i begin the process of entrusting him, and us, to them.  and i begin to capture the countless images i have of my father, not just how he is right now, but for who he's always been.  it's one more step in this long, arduous goodbye. 

i wouldn't change a thing.

*          *          *          *           *

goodnight and please pray that the service tomorrow honors dad.  and that all who attend can capture some little piece of his life story, a piece that helps them pull a little more goodness out of life.

mary, vince, donna, sandi, karl, rob, gail, mike ... thanks for traveling so far. you love us so well!!!

xoxoxox always

oh. one more thing.  he sparkled during his entire two week stay.

it's time to love on the brother

so tonight i find myself dubbing him the Death Expert.

hmmm, perhaps this is a complement for him, perhaps not so much.  but in my short time in his book  Awakening From Grief, i've found enough conversation starters to last us the rest of the week.  (not to mention that crazy book about dragons and princesses and holy grails -- oh and many thanks to mom rice, susan, karli, jb, and jen for meeting me in the castle, or was it the dungeon?  it was so nice to have your thoughts appear throughout the day!)

Since we went long last night, let's get right to the point today!

The guy's name is JOHN E. WELSONS.  For 25 years he has been counseling, teaching and lecturing about life's losses.  it seems he's trained with really smart people, one of whom is Dr. Elisabeth Kubler-Ross (whoever she is).  that's enough for me; i'm sold: Death Expert seems about right to me.

anyway, JB, brother jonathan bruce, this one's for you! i loved your honesty in your comment response the other day so i'll bring it in to start off the conversation:
I can definitely relate to the desire to make the grieving process sterile and speedy. During the past week or so, I have found myself "annoyed" with the fact that dad had to pass just a couple weeks into an insanely busy first semester of engineering school. I stare at a physics problem for too long and before I know it, my mind wanders back to the mountains of GA, with dad as a highlight in every scene. As I struggle with the inconveniences of life, I quickly feel sheepishness and like a total selfish jerk. Obviously, there were eternal timelines in place here and I need to embrace "grief's primative rawness" and let it work it's course. Sometimes life happens quickly, but most often, it takes place gradually over time - like a well aged wine or cheese.
That's good stuff brother!!!  well written (always) and oh so honest.  the honest places are where we can really roll up our sleeves and get some stuff figured out.  with a little help from Mr. Death Expert himself.  tim and i discovered this little passage over breakfast this morning, and man did it bring up interesting conversation between us!  hope it will for all of us here too:

 Our cultural conditioning has been to close our hearts when we experience "emotional overload".....when we close our hearts just when we most need them to be open, we stop the flow of love just when we need it the most.  And we don't even realize that we're doing it!

The result is that we become numb.  We feel as if just beneath the surface lies this terrifying, raging, monstrous beast of feelings that will devour and obliterate us if we so much as let one claw out of the cage.  We sit on our feelings like a gargoyle guarding the gates of hell.  We shove them down and shove them down because we're afraid they'll destroy and overwhelm us.  We're afraid there's no way out.
(ok well the gargoyles guarding those gates are pretty cool too)

the way out is the way find the place in ourselves that watches the process like a impassive find that tiny little part of our awareness that sees everything we go through without judgement, sometimes with bemusement.  It's that part of us that sees our relief when a loved one has died after a long debilitating illness...the part of us that sees our guilt about feeling relief....the part that wants laugh just at the moment we are most angry. That's the part of our awareness with which we must become more familiar, which we must learn to trust.  That's the part of ourselves that can see it all without panic. 
So , bro...i feel your pain, whether its a sense of relief or annoyance.  what do you think of this guy's advice?   what would you say to yourself if you were an IMPASSIVE OBSERVER -- a type of neutral third party -- ready without judgement to give yourself some advice before your Dad Weekend begins? 

(that's you, dear reader!!)

stepping outside yourself to become an IMPASSIVE OBSERVER is one way to work through grief.  have you ever tried it?  any other strategies you'd like to recommend?  personal stories welcome!!!  


tomorrow mom's family arrives, auntie sandi and auntie donna.  quite excited for this!
xoxo k.

Wednesday, September 15, 2010

your story, or mine? ok, well, how about both?!

ok, so tonight's thoughts are a bit in the realm of the abstract.

sorry, that's what happens when i have two full days to do nothing but whatever strikes my fancy.  (never occurs to me to tackle a to-do list when i have an unscripted day before me.)

what i'm contemplating is the idea of a QUEST.  grab a comfy chair and kick up your feet.  this could take awhile.

*           *            *          *          *

yesterday i picked up this book entitled How to Read Literature Like a Professor.  i want to review it and perhaps give a copy as a christmas gift to my neighbor brien, who teaches junior high language arts. (i think of him as a type of professor, as he's a true connoisseur of classic literature. read his blog and see what i mean!)  as my ability to absorb intelligent literature is fairly limited -- perhaps i should give the book to him now and then for christmas, ask him to write me a summary of what the author is trying to say.

but, i'm all for giving it a go.  the first chapter is entitled "every trip is a quest (except when it's not)".  off and on all day, i've been chewing on what it has to say.  i find myself pausing at what i've read because i feel there's some hidden way to use this new information to add perspective to dad's passing.  i believe i may do this for awhile.

he's trying to teach his readers that many stories are built to be a QUEST TALE.  and that, structurally speaking, they all consist of the same basic things: a knight, a dangerous road, a Holy Grail, at least one dragon, one evil knight, one princess.  i get it, these grand old stories.  but then he asks me to contemplate the fact that these things are often metaphorical, cloaked in unfamiliar garb.  like: the knight can be a guy next door; a dangerous road, the path from his house to the corner Circle K; the Holy Grail, a loaf of Wonder Bread; the dragon, a 1968 muscle car.  and so on.  i'm stretching.  but i like the resulting intelligent feeling that comes over me as it starts to sink in. 

but then he kinda blows my mind.  and gets me thinking about my life with dad these past months.  he says (and i quote)
the real reason for a quest never involves the stated reason.  in fact, more often than not, the quester fails at the stated task.  so, why do they go and why do we care?  they go because of the stated task, mistakenly believing that it is their real mission.  we know, however, that their quest is educational.  they don't know enough about the only subject that really matters:  themselves.  The real reason for a quest is always self-knowledge. that's why questers are so often young, inexperienced, immature, sheltered.  forty-five year old men either have self-knowledge or they're never going to get it, while your average sixteen-to-seventeen-year-old kid is likely to have a long way to go in the self-knowledge department.
Whew.  ok i'm still trying to figure out exactly what a quest is, and how an old car can be a dragon.  but since professors usually know what they're talking about, i'm inclined to believe him.  if he says a quest is NOT about the stated reason, then it probably isn't. 

so where does that leave me with my dad?  it begins to dawn on me, slowly, today that

perhaps his journey through death
is not completely as it seems.

*           *            *          *          *

all of a sudden, i see myself as an average sixteen year old kid.  i'm at the ryan house, peeking my head out into the hallway anytime i see a gurney go by.  i'm an overgrown adolescent as i pass by dad's roommates' doorways, straining to see the various forms that "almost dead" can take.

*           *            *          *          *

someone along the way mentioned that dad gave to us even in his death.  i was a bit taken aback by that statement at the time, as the past months have seemed to be a lot about what i and my family have given to him.  perhaps in many ways, though, this idea holds more truth than i know.

take even just his extended presence in a home for the dying.  was it just for him to have the space and time, the luxury, to die in peace?  or was it, also, somehow, a bit about me?  did dad somehow know that his daughter needed to surround herself with death  in order to accept it with grace and joy? 

*           *            *          *          *


six years ago i specifically chose to actively participate in my grandfather's end of life care (who by the way, is a man so like my father that i loved him dearly from day one).  i did this in part, yes, as a way to share my love and skills with him.  but, also i wanted to walk through this time with him.  i had this sense that i was ready to experience death, that i would come to peace with one of life's deepest strains.  to this end, i dove right in and started strong.  i thrived in the privilege of assisting him with all his daily needs: dressing, bathing, toileting, eating, and beyond. but, alas, this place of warmth and joy was not to last.  when it came time for grandpa to die, during his last two weeks on earth, i had to step aside.  my heart was literally breaking and i could take it no more.  just as i specifically chose to place myself in his everyday life, so i consciously chose to remove myself.  one day, coming to visit him at his hospice location, i looked into his eyes and no longer saw him there.  i knew immediately that this visit would be my last.  i knew i would not return to him until he was taken from me.  so much for the embracing of the death and dying process.  imagine my dismay to discover that not only was it was acutely painful and sad, but it was also totally and completely impossible for me to bear.  there was no way to create meaning, purpose, context.  i felt no growth, no maturing. just deep and unretractable sorrow.  the active pain lasted for many, many months, and i never gained that perspective that i had so innocently thought i could choose.

fastforward just six short years.  so what do i do, now that dad is in my mom's and my care, and clearly he is dying?  no one i love has died since grandpa.  so no new development here.  i just might be that 45 year old man who's never gonna get it.  but fortunately, i know this journey, this quest, is not about me, but only what i can do for dad.  as long as my heart and mind don't break, dad, i am there for you.  i'm here to help you finish strong and fully loved.

but as i look at myself now, wandering around and about the hallways of the ryan house, i wonder.  did dad, forever the giver, somehow make parts of his dying story all about me? 

the thought humbles me.  i want to reject the idea, even the very sound of it.  but as certain details run through my memory, i realize this could be the truth.  in living through dad's quest, with each and every gift he gives to me -- a conversation here, a sudden look of recognition and delight there, smiles, sparkles, tears -- gradually i change.  i begin to experience the closing out of life in an entirely new way. fitting. as it should be. timely. purposeful. beautiful. painful, yes, but very right. and wholesome, and good.  what a gift, this growth, this knowledge of all that death can be. 

all of a sudden, i'm no longer the kid who can't get enough of death.  or the old guy who can't soak up anything new.  perhaps i've simply shifted to a better version of the me i've always been. at least when it comes to the part about the dying.

*           *            *          *          *

ok, so i'm still not quite sure about where the princess and the evil knight come in.  or how it is that dragons can arrive on the scene dressed as a car.  but, true to form, i think the gifted professor would say that i'm on the right track. even if i'm not quite there.

*           *            *          *          *

if i'm going to keep writing i've got to share the floor a bit more than i have so far!  now that my pressing need to share the unfolding details of dad's story has passed along with him,  i'd love to become more of a conversation starter.  

with this in mind, yesterday i checked in with karli, our most free-spirited commenter to date (and boy do i love her for the way she shares her heart!).  she told me that she's been holding back, out of love for me and respect for my dad -- and thought that others may also be.  well dad and i are ready to take you on! 

so perhaps i'll do as my uncle mike suggests, and end every post with a question.  he says it will help you bring your own life experiences to the table.  so here goes:

(if i can enter this abstract world of really smart readers, so can you!)

can you conjure up any quick examples of other real-life things that fit some aspect of THE QUEST? 

dangerous roads? 
holy grails? 

something from your own life -- or something made up, from your fast-moving imagination?  i'd love to hear what can be learned on that creepy scary road, or while slaying that awful dragon.

thanks for giving of yourself.
xoxo k.

Monday, September 13, 2010

i've been chipping away at a sudden identity crisis all day long. 

not because i am now a daughter whose father is no longer alive (although, it has occurred to me that this may be a contributing factor).

no, it's because i've realized i've fallen in love with this precious community that has evolved to follow me through my dad's unfolding life-death journey.  each time i read one of your comments, a wave of appreciation comes over me, in a flush, this sense of gratitude at your voluntary presence.  i'm not ready to write the final chapter.

but all of a sudden, the star of my story is gone.  sure, i could yammer on about how much i miss him.  but already today, not two full days after his passing, i feel strange in my own skin as i imagine myself in the act of the yammering.  dad modeled for me in our countless military moves how to take the past in all its dubious glory and quickly bring it into the promise of the current opportunity.  healthy adaptation is all about the skill and speed with which we bring the old into the new, dad taught me, never in a lecture but continuously through his example.  He taught me how to keep the past simple, light-hearted; a constructive context from which to thrive in the here and now.  and, happily: living fully in the present, for the most part, has kept my past from becoming unsightly, awkward baggage that bores the life out of even myself.

so now i experience an awkward shift.  dad's life-death-life dilemma has now resolved itself in death.  which is as it should be.  and in terms of a storyline, as best as i can anticipate, there are only two additional "official" pieces yet to tell:  (1) the experience of his funeral service, and (2) the outcome of his autopsy.  then what?

i'll move on from this tenuous place of loss, for sure.  and i'm okay with this.  looking forward to it, actually.  and, i'm even okay with not knowing just how and when this will occur.  this indeed is the thrill of life, the unknown.  but the daily living out of my grief?  i'd be happy to share, if it benefits you, but i can assure you that these details of my life will not hold my heart captive like my dad has these past weeks and months.  and if i am not enraptured, how can i expect you to be? 

i know when to let a good thing go.  but so quickly after losing my dad, it saddens me to think of saying goodbye to the safety and community you and i have created.  but why keep meeting here? our story is without a plot, and no beloved protagonist, by the mere suggestion of his presence, is begging us to return.  i'd love the privilege of building a long-term community; writing and relating have been lifelong interests of mine. but what would you want to read?  how do we sustain the continual coming back for more? a blog without an active readership is, in the famous two-word phrase of brother daniel, a fail.  better to craft beautiful journals by hand and leave them under the mattress for future generations to find.

*        *        *        *        *

today as i meander through Borders (a favorite spot when i need to wander), i begin to formulate my sense of this sudden identity crisis.  the long and short of it is this:  when i began dad's blog, i only allowed myself the luxury of "immersion journalism"  because i felt it was the only way to do justice to my dad's compelling story.  in the words of wikipedia: to use personal experiences and emotions to provide context for the event being covered.  to go gritty and deep.  and besides, my dad's story was bursting from my soul.  the immediacy of the plot, the depth of the supporting cast, the countless twists and turns.  what other choice did i have?  reducing dad's remarkable story to a list of medical facts wasn't going to help any of us process all that had just happened and was yet to come.  but now, the immediate work has been done.  what a privilege!  what an experience.  two nights ago, my dad's story reached its potent climax. i am fortunate to have captured it in outline form that night, and (thanks to a stranger named anne) through powerful imagery last night.   a fan of suggestive endings, i know we've arrived. a pensive conclusion is in order. i realize this immediately...just about the time i realize, also, that i'm hooked.  I'm hooked on the daily structure of my writing sessions, the therapeutic outlet, the love i feel from and for each of you. 

sounds like a type of identity crisis to me, does it to you?

*        *        *        *        *

in a book i find a nugget that gives me pause:
in this modern world, we have never been taught to experience authentic grief.  we (and others) want our mourning to be tidy, polite, and over in a day or two so we can get on with our busy, outwardly focused lives.  we are afraid of grief's primitive rawness that can completely overwhelm us with its own agenda.  (A Beautiful Death, Cheryl Eckl, pp 255-56)
in a friend, i find a seed of hope:
i don't just come here for your dad's story.  i come to hear your heart.
*        *        *        *        *

i hope not to become that sad soul who gets stuck looping through those unattractive stages of grieving.  i hope not to be that stoic daughter who avoids the sting of her new dad-less reality.  and (most of all), i hope not to be that classic therapist who, in the absense of her story's hero, is afraid to let her friends and family see inside her heart.

an age old habit i think i'll adopt

tonight i was visiting auntie gail's blog, encouraged by the love her people are pouring out to her as she suffers the loss of her oldest brother's passing.

i saunter over to her post about seth godin ("my two cents: why seth godin shouldn't quit", august 26).  one of my favorite authors as well, i am drawn into the lively conversation she and her readers are having about the value of traditional books.  a passionate reader, and holder, of physical books, this new awareness -- that seth may indeed be saying goodbye to published works -- would normally send me into a flurry of research to discover just exactly what the guy is up to.  but tonight i find myself only loosely intrigued.  this i attribute to the day's rather dulled emotional state (at 11:45 pm tonight, sister cheryl notes we've achieved "the 24 hour landmark").  a vague interest, that is, until a reader about 18 comments deep grabs me and holds on tight: 

wow, annie binns. in six simple sentences i am transported again to dad's bedside last night. the closing of my dad's eyes when his life here is no more, the holding of my face tight against his chest, the closing of my own eyes as my tears escape. i breathe in the very last of him, i take in his breath that wooshes out as he closes out this life and enters into the next.
I could never give up the tangible, bound book. I, too, highlight Seth’s and a few others’ books with yellow and blue and even stick Post-It tabs on their pages. But the part I really can’t give up is an age old habit when I finish a good book. I close the pages and hold it tight next to my chest like I’m giving it a hug. I don’t know why I have always done that. I close my eyes while it’s right there and try to breathe in the very last words of wisdom that woosh out of it as it closes.

perhaps the closing of a good book, with all its wisdom tucked within, is quite like the closing of a good life.  gratitude for all that was given, and sorrow to have arrived at the end.  the urge to re-read the highlights, to experience again the highs and lows of the story as it captures us and teaches us a little, or a lot, about life.

dad, my life feels heavy without you here with us.

thank you, loved ones, for all you have given, and will continue to give, to us. 
xoxo k.
tonight i was visiting auntie gail's blog, encouraged by the love her people are pouring out to her as she suffers the loss -- and joys -- of her brother's passing.

and then i sauntered over to her blog post about seth godin ("my two cents: why seth godin shouldn't quit", august 26).  one of my favorite authors too, i found myself loosely intrigued by the whole discussion of his recent decision to discontinue traditional publishing.  a passionate reader, and holder, of physical books, i normally would begin a full-on search to discover just exactly what the guy is up to.  but, given the permission cheryl has given me to have a post-passing dulling effect ("the 24-hour landmark" she called it, at 11:45 pm tonight), i figured that a vague interest would have to suffice for now.  but then -- one of her reader's comments, about 18 comments deep, grabbed me and held on tight:

"I could never give up the tangible, bound book. I, too, highlight Seth’s and a few others’ books with yellow and blue and even stick Post-It tabs on their pages. But the part I really can’t give up is an age old habit when I finish a good book. I close the pages and hold it tight next to my chest like I’m giving it a hug. I don’t know why I have always done that. I close my eyes while it’s right there and try to breathe in the very last words of wisdom that woosh out of it as it closes."

wow, annie binns.  in six simple sentences i am transported again to dad's bedside last night.  the closing of dad's eyes, the holding of my face tight against his chest, my fin, the resting of my head upon his chest as my eyes fill with tears.  i breathe in the very last of him, his breathe that wooshes out as he closes out this life and begins the next.

Sunday, September 12, 2010

SEPTEMBER 11: a fitting day for dad to die

i thought i would be able to sleep tonight without coming here to wrap up my day. but, apparently meeting you here through my posts has become an elemental part of my daily routine. perhaps i will need some time to pass before i can know and share with you impressions that are close to my heart, but it seems best to state a few things simply to you, my dear family and friends.

tonight, at 10:40 pm, our dad slipped away from us. each of us in the room -- mom, cheryl, jonathan, bethany, tim and me, along with our nurse laura -- experienced his passing in our own unique way. likely tomorrow I will discover some of their perspectives -- perhaps they are completely different from my own. but for me, i must say, i experienced his death as gentle, generous, dignified and, yes, with a bit of dad's signature twinkle!

* gentle, because it wasn't sudden or traumatic in any way. his final breaths came intermittently, with long pauses in between, for about 30 minutes. we had time to adjust. there were no gasps or ragged, wheezing labored efforts, no heaving chest; it was...well...different than any other type of breathing mishaps he's had. It felt purposeful. and not scary to me, or him, in the least.

* generous, because all of us were able to be in the room together. while this may not have been by dad's specific choosing, i do feel inclined to think it was by design. why not just by chance? well, today contained the only 12 hour window of time since his icu "brain death" days in july, when mom and all of us kids (minus the military one) have been together in the same room with him. without going crazy on the math, i'd say there were about 119 other 12-hour windows that could have been given to our family for his passing. some of which, were only mom or me present with dad. or dad in his room, all alone. how strange and wonderful, i had projected in an earlier post, it would be to have us all together in the same room wishing him well as he enters eternity.  it was both of these sensations, and more.  strange, wonderful, and most merciful to all.

* dignified. dad, all this time, and despite intensive levels of cognitive decline and emotional strain, has always had a presence about him that others beyond our family have noted. lots of different descriptors that they used, nurses, doctors, therapists, visitors, to explain their experience with him....but i've delighted in their efforts to put their sense of him into words. because no matter what words they use (fascinating, intelligent, cute, precious, adorable, mysterious, inspiring), i always see an overlay of dignity; like his father, he was always gracious in every setting. eager to express appreciation at your presence.  a true military diplomat.  and even though his ability to interpret his environment became diminished over the past few weeks and months, his sense of dignity remained. i can't describe the dignity within his death tonight; perhaps tomorrow i can gather some sibling support on this one and get back to you.  tim says it was quiet dignity.

* with a bit of dad's signature twinkle. at the end, when his breaths became intermittent, we didn't know when (or if) they would resume. and as they continued to return, time after time, they gradually began to morph into breathing i'd never seen before. had this happened just once or twice, i could have handled it by quickly stashing the experience away in a distant, vague memory bank. but as these intermittent breaths continued i began to get a bit disoriented: what is happening here?  cheryl's imagery mid-way through provided an immedate visual for me to hold on to. and then, all of a sudden, i saw the sparkle in it all. his breathing made it appear he was running. running, my laser-beam-heaven-focused sister recommended, straight to the gates of heaven.  as soon as she said it, i could see it. the eager over-exertion that forces one to slow down just for a few moments to catch one's breath.  but not for long, as something worth the effort is right before your eyes... a big wide ribbon that you're straining to break, so you can know the race is won. run dad! we promise we're not that far behind.

it wasn't hard to imagine the twinkle in his eyes & i've seen it, against all odds, all the way to the end; surely it was there tonight.

so, so much yet to accomplish in the celebration of dad's life and the putting of his body to rest. I want to officially thank each of you for your ongoing support of me and my siblings as we have shared dad's journey with you.  i feel we have a few days, yes and perhaps weeks and beyond, to process what we have  experienced.  I welcome you to sign off, and return to your normal routines.  or, if you'd just assume stay and participate with us in our process of embracing our dad's passing, we welcome you to stay on. 

Based on the speed with which i have raced to my laptop each evening, i can only imagine that this form of community will continue to play a key role in my life as the reality of what we've lived through comes to settle in my soul.


brother daniel and i are planning to collect your individual memories and impressions, and integrate them into the upcoming celebration of dad's life.  if you have any photos to share, feel free to send them via email to me at  if you have words to share, feel free to post them here or email them to me.  and for any snailmailers, our address is 60 East Vernon Avenue, Phoenix, AZ 85004. 


has my gratitude to you for your connection to me and my siblings been apparent in my posts and responses to your comments?  has my need and appreciation for your love and support been clearly expressed?  if you could spend time with me physically in the same room, i feel as though you would see it oozing out my pores.  you'd feel it in my hugs, you'd see it in my eyes.  without you here, my ability to be present as i was with my dad, day after day, week after week, would not have been possible. 

so once again, i thank you with all my heart for keeping me and my family in your heart.
xoxoxoxoxoxoxoxox always and forever,

Saturday, September 11, 2010

pending freedom

the nurse just told us that she will be surprised if dad will lives past midnight.

mom and i just spoke together that dad has been working a long time toward freedom.

sad for us, surely, but so right and glorious for him.

the only one we're missing here tonight is daniel, and the rest of cheryl's family.  my gratitude for dad passing on a night with so many of us here is just, well, beyond measure.

i feel the love of each of you with us.
thank you all.

Friday, September 10, 2010

ahhhhh....more precious time?!

well, mom, dad, cheryl and i (along with tim) have parted ways for the evening.  dad lives on.  the doctor who saw him tonight says that his heart rate is quite elevated (now 140 beats per minute rather than 60-100, which is the norm).  and that surprisingly, his lungs are now clear (they have been coarse for the past few days).  this means that he will likely not end up ending life with a type of "suffocation" death (which, several days ago when his lungs were filling with fluid, the doctor said was likely.  He had worked to prepare us, stating that while this type of passing is difficult for bedside loved ones -- the air hunger, the gasping, and the gurgling --  thankfully due to adivan and morphine, it is not typically difficult for the patient.)  this doctor was an amazing, unexpected help for each of us tonight.  we learned lots of new things, and not once, not twice, but three times he asked us if we had any further questions.  to fully appreciate this is to know that mom and i, ever the information seekers, seldom experience this level of patience and investment at the physician level. hospice however...yet another way that these guys break the mold.   he took lots of time to fill in our end-of-life knowledge gaps.  one of which, the ever-present backdrop priority, is the "when" of it all.  in saying we won't likely have more than two or three more days, he gives us the idea that perhaps, in fact, today may not actually be the day after all. 

i must admit, i feel almost giddy.  first and foremost, sister cheryl is here.  the sensation as a little sister that my competent big sis is here to save the day...well it's palpable.  and effectively  indescribable. she wonders at her inherent "hero status" (simply by stepping off the plane -- but i know as well as anyone that, with 4 growing kids at home, even this thing is no small feat).  second, is the sense that i may not need to see my dad strain for his final breaths. (i did see this status for about an hour two days ago, until re-positioning shifted the demand on his lungs.)  how it will look, exactly, no one is able to outline...but the idea that we may not have to suffer beside him....well, giddy is really the best word.  third and finally, is the sense that i keep getting more time with my dad.  still, after all this time, i thrill at the idea of more.  Insatiable, i am.  well, perhaps this word isn't perfect....but it's close.  

jonathan and bethany will be here in the morning.  would be strange and wonderful, all of us in the same room, loving our dad, and wishing him well as he enters eternity.

i cannot tell you how hopeful i am that another late night call will not come to us tonight.

thank you again, each of you, for all your kindness and support.
soon we will be living with a dad-gap in our lives, but for now -- we phil bruce kids are gifted with just a little more time.
xoxo, k.

perhaps today is the day

we just got a call from the ryan house that dad's closure here on earth could be anytime.  his blood is no longer traveling to his extremities.  we will keep you posted.  please keep dad in your prayers, that his transition will be as smooth as it is meant to be.

love to all,

hallmark therapy

tonight i did something i've never done before.

i bought myself a greeting card.  i've gone to the movies alone before, but never this.  tonight i said, why not?  everytime i go to walgreens and wait for a prescription, i peruse the cards.  i love the artwork, the sentiments.  i think of the people i love, and try to find a card that would be perfect for them.  sometimes i buy them, sometimes i just find the right fit, smile, and then put them back in their proper place.  the ones i buy, i rarely send.  maybe someday i'll be organized enough to get them into the hands of their intended owners.  somehow, though, at least at this point in my life, the picking of them seem to me to be the main point of it all.  strangely satisfying.

well, tonight, i found a card that seemed perfect for what i would say to myself if i wasn't me.  rather than smile and part ways, i snagged it.  it belongs on my refrigerator, among the collection of precious cards that others have sent me since my dad's illness.

in today's world of online communication (which i stamps, no strain to make it to the post office!) cards are old-fashioned and nearly obsolete.  which makes their arrival in the mailbox all that much more meaningful.  and sometimes, they're the only way to say what's on your heart.

so here's what i have to say to me tonight: 

May God not only lead you
beside the still waters,
may He give you a good long drink
of his SPIRIT.

May He fill your cup
to overflowing
with blessing
after blessing

Thinking of you
and praying
you'll be refreshed by
in your life right now.

Ahhhhh, see what i mean?  that's good stuff!  after recovering from the sheepishness of it all, i've actually come to the conclusion that i've just stumbled upon a great idea.  try it sometime!  your prescription will be ready before you know it.


Dad continues to hold on.  I continue to be grateful for the extra time.  CHERYL IS COMING TOMORROW!!!!!  How this Canadian continues to be so available to us Phoenicians, i'll never know.  but i just can't wait.  i'm ready to share this time with my sis.  my big sis, who always knows what to say, and how to help.

xoxo to each of you!  you mean so much to me.

Wednesday, September 8, 2010

the week begins with changes

hello dear friends and family!

i've missed being here over the weekend, but wow time with best-friend-from-kindergarten laura was amazing.  i may have the opportunity to share some details from her trip (and contemplate the beauty of historic friendships), but for now i thought i'd focus on dad's current status.

i'm actually here right now at the ryan house, using their computer down the hall.  and anxious to get back to him.  so, brevity will work best for now!

monday night, dad's status changed and he entered into what i am now understanding is the "emminent death" process (the typical patient status that inpatient hospice is responsible to support).  so, thankfully, he is able to stay here at the ryan house and complete his journey.  what a privilege to participate in a natural death process.  it's still a lot of work for dad (dying is not easy on the body!), but oh so fitting and so good. 

i'm starting to think a lot about heaven.  and, thanks to my sister (who has warm-hearted, practical thoughts on the matter), it's beginning to seem like a glorius near destination for dad.

like cheryl says, we'll never have to say goodbye.  only "see you later, dad."

much xoxoxo to all, always!

p.s. check out beth's beautiful comment on the last post, "hmmm how time flies."  jonathan found himself a treasure!!  thanks for your time and open heart my dear bethany!!

Saturday, September 4, 2010

hhhmmmm. how time flies

well, already the Ryan House is beginning to talk to us about placement.  can you believe it?  i knew the time would pass so quickly, and from day one i have known to soak it up. 

once Dad stabilized from his bleeding incident on saturday night, i've seen the signs that his decline, while notable to us family members, is still not fast enough to warrent his ongoing stay here (the average length of stay is just 4-5 days).  i spoke at length with a very kind nurse tonight (wow, how can EVERY SINGLE ONE of them be gentle, and kind, and knowledgeable, and.....companies could learn a ton about hiring strategies from these guys!!).  She followed my lead in my line of questioning on dad's behalf, most of which tonight focused on placement plans.  she helped me realize that the role of inpatient hospice is really to be problem-solvers; they don't just give people a certain number of days to die and then if they don't, they're out (which is all the further i've understood up to this point).  rather, their job is to take in patients whose situation creates a need for more information or support.  once the unmet needs are resolved, and the family is prepared for what's next, they are discharged.  oftentimes during this process, the patient dies. 

the clarification helps.  her explanation highlights an additional facet of the role of their work beyond the understood dying part...another reflection of their care and competence to navigate the complex reality of the dying process.  but whew it sure creates more challenge for us.  dad has to sustain another transfer (i'm counting at least 7 since may 15th), and mom and i have to do more placement planning.  at this point we have only spent the "logistics" portion of our energy this week preparing for the details of his death (mortuary, casket, autopsy, burial site).  To plan the logistics of further life?  well, on one hand it does feel precious to have more time with him, on the other hand it feels like more pressure to try to get it right.  there are so many variables, it is most demanding to sort out all the necessary pieces of information.  and as you can probably tell from my posts, the Ryan House feels so safe, so simple, so just what we all need.  it's scary to be thrown back out there without their specific, perfectly-trained, family-centered, here's-how-to-create-comfort support.

which is why daniel's post on his own blog today was so perfect for me tonight.  (you can get to it by my Family Bloggers! sidebar link, "cadet daniel's briefings").  i'm tired, struggling with the "me-ness" of what i want for dad (more time in a nurturing, comfort-focused setting).  and here comes the youngster, prompting his online followers away from themselves and toward the truths tucked inside the Lord's Prayer.  ok!  wow.  try getting outsmarted by your kid brother.  feels good (but don't tell him that).

ok, so i guess i'd have to vouch for his blog.  kinda a lot going on in the heart of that cruisin' lab rat.  glad he's deciding to open it up so we can peek in.  i like what i see.  bet you will too. 

laura comes tomorrow!

goodnight and more love than you know,

Friday, September 3, 2010

maybe daniel's onto something

so, i check into the blog before heading out to see dad this morning.  i note that daniel's taken a moment to address my sadness that he and jonathan will end up with so much less of dad than cheryl and i had (see sept 2nd "family love, again").  turns out he feels dad's presence every time he goes to class.  i don't know if he's just trying to make me feel better, but it works, sort of.  but still, i think, how does HE know?  you can't know to miss what you didn't have, right?

well, then tonight i run into these photos.  suddenly i'm struck by the sense that maybe cheryl and i don't know what WE were missing.  true, we got a dad who was in the height of his military career, and loving it.  but daniel and jb got a dad who was there everyday, to teach them the little things.  an axe here, a snapper there.  having an older dad may mean you spend more of your adulthood without a dad physically by your side.  but, from the look of these photos, it seems like dad made good use of his retirement time.  seems he treasured these boys, up close.  Hands on.  If time is love, perhaps all of us phil bruce kids are doing okay.

good night all.  xox k.

Thursday, September 2, 2010

family love, again

ok, who knew that the dialog of a couple of every-day-great guys could bring a little tear to your eye?  well check out dad's guys: his son daniel, (gotta read aug 12, entitled welcome!) and jonathan and darren, son and son-in-law, respectively (aug 30: our weekend update).  about the homework thing, i get it.  one of my best high school memories was also surrounding dad and math.  i'd come home, lay my pre-calculus assignment on the dining room table and go find dad.  he'd take a quick look at it and say with some hesitation, "i'm going to need some time to brush up on this."  i'd head up to my room, expecting to have half the night to talk on the phone (after all, it's not simple algebra we're talking about here!).  not five minutes later i'd hear his booming voice calling up the stairs; he's fully ready to teach me everything i'd missed that day in class.  SO, MY BROTHERS....please know that some of my grieving curve is filled with you both, how you'll not get the same opportunities to soak up dad like cheryl, darren tim and i have had.  perhaps his legacy in some strange way can be fuller for you because he's left such a strong part of himself in each of us.  And truly, no one lives out unconditional family love (dad and grandpa's specialty) like those two big brothers of yours.  even if their sports of choice ARE a bit sketchy (hockey for the northerner and UFC for the arizonian).  xoxox always and forever!!

ok so today was another great dad day.  his voice is diminishing (we're almost back to a whisper) and his sputtering seems to be increasing. but happily, he continues to be alert throughout the day, and can still relate with us.   He continues to make quite an impact on those around him, even people new to his case.  An example:  take the music therapist who comes to see him this morning.  his nurse gives me the report when i first arrive (my first stop before going to his room, so i don't walk into any surprises.)  the therapist comes in to play her harp, and sing.  dad starts singing along.  and then, he is moved by the music, and he begins to cry.  and then the nurse and the therapist are holding his hands, one on each side of his bed.  and then everyone is crying together.  as she tells it i realize she is touched by the experience. it's a little hard for me to know for sure -- she shares the story in such a gentle, breezy way.  her words are brief, and then she moves on.  if i wasn't reading her face, i would miss it all together.  it's what we all seem to do around here:  we feel difficult things deeply, but quickly.  to linger in our thoughts with one another would be adding excess burden to the other's heavy reality.  maybe here, during our countless brief encounters with strangers, we're learning a healthy way to grieve.  embrace the moment, then move quickly to the next.  i see it like a gentle breeze.  It messes up your hair, but it doesn't ruin your day.  

oh, dad's tears.  in all the posts i've done to date, i've not yet mentioned his tears.  partly because they're so, well, confusing.  and so special.  a privilege.  i've felt the need to put proper voice to their presence, to do them justice.  don't know that i'm the one, actually, to paint the truest picture (karli, maybe?  or perhaps erica?  or katie?  you three have all been so amazing to absorb dad during his tears.  thank you for your strength!).  but i can say this.  it's not just one or two that escape down his cheek.  it's many.  and as they come, it looks like his heart is literally breaking.  so if you don't put them in a breezy place, and fast, your own heart will likely break as well.  i first encountered this form of his neurology last friday in icu.  thanks to mom's preparation i knew in advance that, with his aphasia (word finding difficulties) and his underlying dementia-like process, it's not possible to uncover the thought processes behind them,  and its not possible to help him work through them logically with him.  so the first time i saw them, i quickly found this wonderful place just below his right collarbone.  as soon as the tears begin, i say these words, in exactly the same way:  "ohh...daaad!!!" then as i lean around the hospital rails i find that cozy spot.  sometimes he can lift his arms up around me, sometimes not.  and i'm rambling about hugs, how great they are, how everyone needs to cry sometimes, i love you dad, it's gonna be okay....and then i'm breathing deep and slow, so he can feel the rate and pace of my breaths.  sometimes his breaths begin to match my own, and it seems to quiet him more quickly.  other times, his silent sobs seem to have a path of their own.  in time, they diminish and i brave a sneek peak back at his face.  if he still is weepy, i then make a choice: i go back into the hugging / crying / breathing sequence, or i change the tone of the room completely and work as quickly as I can to help him shift his brain to something new.  There appears to be no one best way to navigate this process, as different things have differing effects for him at different times.  So i just go with my gut and try to do what seems best in the moment.  but always, i feel the privilege.

i love to hear what you all are thinking:

to cry it out?  or to change the topic?
what works best for you? one, both or neither?

for my dad, i believe it's impossible to know.  it could be frontal lobe damage (creating an emotional phenomenon known in stroke and head injury circles as "lability": intense emotional responses that are much stronger than the true emotions of the individual).  or it could simply be dad's unique way of processing his fatigue and end of life reality.  or a mix of both, or neither.  Because of his ongoing confusion, there's so much that he cannot express or understand.  but i'm willing to act as though these emotions are his own...just in case they are the true reflections of his pain.  it only makes sense to offer him the same things that always work for me:  tears, more tears, human touch, and yes, a few good cartoon characters who make me forget my troubles for awhile.  (that acorn-chasing squirrel in ice age seemed to do the trick for all of us tonight.)

ok i end with one last thing: best friends from kindergarten.  they're not so easy to come by, are they?!  mine is coming to see me saturday morning!!  all the way from florida, two full days of travel so we can spend the weekend with each other and with dad. you have NO idea how thrilled i am. I JUST CAN'T WAIT!  i'll always remember my call to laura when dad was in his "brain death" status in icu.  i called her because i simply had to talk to HER.  no one else would do.  i didn't really consider why i had to call her, and only her, in that particular moment.  in my shock and pain i'd forgotten the truth of how interconnected we are; how one life affects another.  laura's immediate grief took me by surprise -- and then when she articulated her feelings i got it: my dad is her second dad.  yes.  of course. and her dad is mine.  we feel each other's losses, and they become our own.  that's what true friendship is all about.  all you youngsters....can you imagine it?  a friendship that is 33 years old.  she will feel my losses in a way that no one else can.  her bravery to face this monumental loss before its fully gone is sacrificial friendship in the highest form.  spending time with her spending time with dad will likely cause my grief curve to heighten, and deepen.  which in turn deepens us as daughters and as friends.  33 years, and counting.

Isn't life cool?!

xoxo tonight, tomorrow, and beyond,

Wednesday, September 1, 2010

family love, once again

ok who knew that the dialog of a couple of every-day-great guys could bring a tear to your eye?  well check out the guys in Dad's life...his son Daniel (Post #1, ) and Jonathan and Darren, son and son-in-law, respectively (  ).  So cool to read.  I'm with you on the homework theme!  One of my best high school memories was indeed, bringing pre-calculus homework to the dining room table and saying, "Dad, can you help me with my assignment tonight?"  and he would glance at it briefly and say with slight hesitation, "I'm going to need some time to brush up on this."  Expecting to have half the night (it was tough stuff, you know!), I'd go to my room to get started on another project.  Not five minutes later he'd be calling up the stairs, fully ready to teach me all I'd missed in class.  Somehow, in his case, his smarts translated so easily to my sense of security.  Perhaps it's because he so generously shared them with all of us.  SO MY BROTHERS...about that grieving continuum you both have so eloquently discussed.  a big chunk of my linear curve is knowing you two won't have your Dad to help with all your crazy engineeering assignments.  And that he can't help you growing into your 30's, and 40's. Perhaps his legacy can give you the sense of learning to love a family both your dad and your grandpa did, every day of their lives.  it's quite a giftxox

Okay, so today was another great dad day.  He does seem to be choking more on food, and his voice seems to continue to be getting weaker.  But he can still relate with us, and his impact on those around him continues: An example?  here's a great one:  I go into the Ryan Home this morning and stop at the nurses' station and ask, as I usually do, for a dad update.  They say he's had a busy few hours.  Most notable was the visit from the Music Therapist.  She was singing, playing a guitar I believe, and Dad starts singing along.  Then his nurse (a brand new one, with no prior knowledge of Dad's amazing-ness) says the music seemed to move him and he starts crying.  And she and the music therapist are each on one side of his bed, each holding a hand, and now they are crying too.  She was gently touched, it seems to me.  Kinda like I was trying to explain last night.  How everyone feels deep things quickly here in hospice, like a light and gentle breeze.  This way, it doesn't topple you.  Can't tell you how wonderful it is to know he's feeling those gentle breezes across his skin when mom and I aren't able to be there.  we are being so very well cared for here. 

Oh, Dad's tears.  Despite all the posts, I haven't talked about them yet because each time I am summarizing the day there are too many things to put out there, and this feature of Dad's current status is so, well, confusing.  And special.  I'll save the imagery for another day, perhaps.  Or maybe Erica, or maybe Karli, or perhaps Katie, three precious people who have supported me here can paint you a picture.  (Thanks to each of you for absorbing such a tricky thing.)  But the basics are this:  Dad's neurology creates a predisposition to tears.  Not just one stray tear but lots of them.  It's enough to make your heart break, so we each find a way to comfort him without letting it break ours.  I have found this perfect spot, just below his right collarbone, that feels cozy.  Just before I lean in and over for a big-time hug (not always so easy with the hospital rails, but we get by) I say, the exact same way each time, "!!!"  .  Sometimes he can hug me back, and as I rest my head on his chest, I tell him that perhaps a hug will help, and that I'm so sorry he's sad.  I breathe slow and deep and often he matches my breathing.  this helps to diminish his silent shoulder sobs.    i let a few moments pass, then i pull away and brave a peek at his face.  if he's still sobbing i'll either lean in for another round, or i will shift gears and try to change the topic.  after days of this (mom says he's been doing it daily since a week ago sunday; i've only been working with it daily since the icu last friday.)  i figure we all need different things at different times, so why not switch it up.  Since he has word finding difficulty, and an underlying dementia-like thought process, it is impossible for him to express the cause of his tears.  And quite impossible for us, or anyone else, medical staff included, to know if it's his way to process his situation, or simply evidence of frontal lobe damage and not indicative of any true sadness (in the stroke world, this is called "lability").  sometimes i think it helps him to just cry it out; other times i think shifting gears is more helpful.  have no idea which he'd i just go with my gut in the moment.  as sad as it is, i've gotten used to it and i mostly just cherish those hugs. and the combo breathing.  if you go breezy, you can keep hanging around. 

last of all tonight:  best friends from kindergarten.  they're hard to come by!!  mine is coming to see me this saturday and i am BEYOND THRILLED.  when i told her about dad's brain death status back in july, she was deeply saddened, and easily admitted something that had actually slipped my mind somehow:  Dad is her second dad.  As hers is mine.  and dad is the first of our four parents to suffer extended illness.  how precious that she is willing to face this tragic, if still inevitable, loss.  we get two full days together.  i believe my griefing curve will heighten, and deepen, in her presence.  because of her, i get it: loyalty is what gives friendship its staying power.  for her and me, it's 33 years...and counting.

thank you for all the time you give as you come here for updates.  time is a wonderful gift to give someone in their final days and weeks.  maybe tomorrow i'll tell my dad how many people are honoring his life each day.

love and more love,

life on the other side of the hall

Today was more great time with Dad, some fun Arcadia work while at the Ryan House, and a visit to a mortuary.  Strange, but so right and good, to mix the three together into one.

I find two things surprising as the day comes to a close:

1) the things you think will get you, don't even phase you...and the things you thought you had nailed down end up sweeping you away. 

2) the inpatient hospice world is actually a tight knit community, where bonds are developed and released quickly.  death becomes normalized, expected actually;  countless pleasantries and warm connection mix together with poignant points of sadness.

Example for #1
I have always dreaded the casket picking process, even before I knew Dad would be the first loved one in our immediate family to pass.  I pictured myself in the midst of a sea of metal boxes, dead people in the basement below driving me to morbid distraction while high-pressure salespeople hover nearby.  No image could be less accurate than what I experienced today.  Mom, Tim and I walked into the casket room at Hansen Mortuary, a family-owned community mainstay since 1947.  Brenda walked us into a well lit room, with, yes, many selections in view.  But her clear and simple introduction to the process provided immediate focus:
The prices for caskets vary based upon the level of craftsmenship that goes into them, as well as the materials used.  Take a look around, and I'll come back in a few moments to see what questions you have. 
And then she was gone, and the basement's activities did not create the dreaded distraction.  Despite the many selections, Tim (who almost never speaks first!) immediately stated his impression that wood would be so fitting for Dad, given his woodworking passion and mom's love of antiques.  Mom and I both quickly agreed.  Looking only at wood took us to just one wall of choices.  And from there, it was even easier.  One casket clearly stood out as the one for Dad.  When Brenda came back in, she pointed out another similar, but less expensive option.  End of tour, on to the next step in the overall mortuary process.  The entire experience was quite enjoyable I would have to say, all things considered.  We will see if our other mortuary option creates a similar response in me.  Will be able to let you know tomorrow.

And the thing that swept me away?  Our drive-through tour of the Arizona Veteran Cemetary.  We weren't even planning a visit, necessarily, until Brenda brightly (but specifically) advised it.   Apparently, being buried in the desert doesn't morph well into my sense of place.  Ask Tim and mom, the comments from the "peanut gallery" (i.e., the back seat of our Honda) quickly escalated and, were it not for the tinge of panic around the edges, would have made for excellent stand-up comedy.

OK, and I quickly move on to OBSERVATION #2:
I've met a sweet young teenager, Jayden, at the Ryan House who is there with her large family to help her Grandfather pass.  I've kept my eye on her, making a point to say hey and offer whatever normalizing positivity I have to give in that moment.  I must say it's been nice to see her gentle innocence absorbing the experience.  The other night I'd told her to come by our room anytime to say hi.  Well tonight, she seemed a smidge bored so I asked if she'd met my dad yet.  She said no, so I invited her to our room, #204.  A brief flicker of hesitation, then the bravery sets in and she agrees.  I introduce her first to Tim, to give her a moment to adjust to our unique situation.  Then, I move on to Dad and he smiles and whispers something we can't hear.  IMMEDIATELY she looks at me and says pointedly, "This is so nice.  My grandpa is completely unresponsive."  And all of a sudden I see my situation differently than I normally do.  Me, aware enough in advance of death and dying to not have to suddenly learn big words like "unresponsive."  And Dad, who still has a delightful bit of himself to share, even with strangers.  All of a sudden, my dying Dad seems so very alive.

And then, we move out to the hall and I chat further with her and her great aunt, who has just joined us.  Jayden is facing us, away from the back exit; her great aunt and I are side by side.  What Jayden doesn't see as we exchange pleasantries is the reason for which we are all here, ultimately.  An empty gurney, covered with regal red material, is wheeled into the room next to dad and the door closes.  Having seen this once already, I know that in several moments, the gurney will enter the hall with a loved one's body upon it, and the grieving family will follow close behind.  I am distracted to know how to help Jayden should she turn around, but as the scene unfolds I realize that it's her great aunt's job to help her through this, and my job to use this visual to help me further prepare for Dad's passing.  Having muscled my way through my first death on Friday night, I am pleased to discover that my visceral responses are so much less pronounced.  I smile inside, pleased at my progress.  But then all of a sudden, I am tearing up as the quiet, desperate mourning of the loved ones fills the hall.  Sensing the nearness of it all, it seems we each catch our breath and hold it in, for just a sudden moment or two.  Then just as quickly, we move back into the safety of our pleasantries once again.  Three strangers together, yet alone.

If I had to quantify the hospice community, I would say the common condition creates a very reserved, yet freely given type of support.  

Oh -- and Jayden?  Well, apparently she is already a pro.  Their hall has had 5 deaths since her grandpa arrived on Thursday.

So, you faithful readers, I have to ask you for your thoughts on the matter.  Your insights mean a lot!

How do we as humans adapt to such extremes?
Would hospice help your soul feel strong?

Well, that's it for now. Other than to tell you that Dad had a strong day in terms of his vitals.  He did choke a bit as he enjoyed his thickened food.  And his voice seems weaker today.  But still, I see so much of my dad.  Especially when I think of what Jayden is facing down the hall, and around to the right.

much love to all,