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 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.


  1. Karen, when I saw that form on the board last Saturday, it definitely brought to mind the REAL dad... a force that helped shape us into who we are, the one who always loved us, and someone who will live on inside us for the rest of our lives! -- and oh yeah... don't forget those Marie Callender pies!

  2. Oh yes yes, the pies! I hear we are gonna have several to choose from after our dinner celebration of dad. So cool that we can practical ways to remember him, as well as our global impressions. Makes me wanna get some real down to earth preferences and passions so u guys will be able to think of me constantly when i die :-)

  3. I, too have memories of Marie Calendar Pies. Way before they were sold in the grocery stores. I think everytime we came for a visit in Dayton, we'd go there. I'll never look at them the same again.