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.

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,


  1. Karen, one of the cool things about college science and math classes is remembering the basics that Dad taught us. We worked with him on our physics and chemistry classes. So using the basic principles of scientific notation, unit analysis, significant digits, etc (all those science-nerd topics)in physics or other math/science classes brings back great memories of learning this from Dad. I'm sure that Jonathan has similar memories.

  2. how comforting to know that you do have more of dad's science / math skills than i realized. how cool to be able to hear him in your mind's eye (yeah i know i'm mixing sensory systems but it alsmost works, huh :-)) thanks for letting me know. xox my bro!

  3. I think what we need most, when sorrow strikes, is for someone to be with us. Words are often not necessary. Just presence. Thank you for giving your presence to your Dad. You hold a special place in his heart which can never be filled by another. The Karen Spot.

    BTW, I remember your dad's tears at Jonathan's and Beth's wedding. He was overcome with happiness and it was spilling out of his eyes. Not all tears are sadness. There is the agony of overflowing joy.

    I so wish I lived close so I could be sharing your moments with your dad. I love him so much. ... My BIG brother. ...

  4. yes my dear auntie. wish you were here as well. when you came back in july it was so nice to have your stabilizing presence during all the demanding icu days. and you have such fun updates on all those precious cousins of mine!

    thanks for the reminder that presence is sufficient. often i find when i'm stopping in to see dad that i feel the need to DO something...even if its just put on his flavored lip balm or raise or lower the bed, or feed him applesauce or get an update from the nurse, or....thanks for the permission to just sit. xoxo always!