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 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,


  1. Have been catching up on your blog, don't feel like I have anything productive to add...but am SO glad you're posting your thoughts and letting me see what's really going on with you & your dad. Hang in there with the next 'transfer', what an exhausting stressful set of decisions you keep having. I'll be praying for you & your mom, your dad, & everybody else. Love you.

  2. I love you Karen. Know that I am doing what I can do from far away. Praying for you (plural). Strength, stamina, patience, hope, peace, gratitude, trust.

    “Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience.”

  3. ginger-so glad to know you are here. so many family memories of mine growing up are of you and me giggling, doing just about anything! swimming, playing cards, trying to fall asleep, or just well giggling. !!! such a fun cousin you've always been. thanks for your prayers.

    and gail too. i love your thoughts that patience is there specifically for the hard and slow times. always seems like tim's specialty, not mine. but i'm gaining on him! love each thing you're praying for. each one sounds like music. xoxo

  4. Hi Karen!! So I finally became a "follower" so I could actually post and not just read. I have loved keeping up with your blog. I will use my mother's term for it... We both agree that it is very enlightening. I just want to share a few thoughts that I have had lately.

    I never had the opportunity to know your dad before this confusing disease (or whatever we can define it as) took ahold of his brain and body. Sometimes when I think of that I am so deeply saddened, but I also think of the fact that I still had the opportunity to know and fall in love with everything your father is short as the time may have been. I remember thinking the 1st couple times I met him that he was just ADORABLE , and Jonathan would always tell me, "Dad just adores you! I think you found a place in his heart and stayed there." I sure know he found a place in my heart! Here are some of the things that I have had the joy of experiencing in the last 3 years. Dad is one of the most joyful people I know. Nothing phases him. He is just always so "chill" and happy. He was never "too manly" to express his emotion (I don't know if this has always been the case or if brought on by his medical issues.) but still so precious to see a grown man cry out of pure joy and love as Aunt Gail mentioned. He is also one of the most passionate people I know. I always love to listen to him tell stories of the AF, not just because of the interesting facts but to watch his face light up. I wish I could describe how he would just transform into a different person as soon as someone would mention the AF or airplanes, but I think you all know. It never ceases to facinate me how INTELLIGENT Dad is. Wow! He knows so much, and I don't know how a man in his 60's could actually remember such detailed information about calculus and a gazillion other things!! Shoot... I forgot calculus in a few months. Yes some little man in his brain locked the box of knowledge in his brain and lost the key, but I won't every forget that it was there. Yes my time with Dad is miniscule in comparison to Mom's and the rest of the family, but I don't have the option to change that. The only way I can look at it is "How absolutely WONDERFUL it is that I have what I have with him."

    Also... I don't know if I will explain this thought the same way I feel it but I'll try.
    It is impossible for your dad to ever "die". Yes that is true in the aspect of his soul being with God and only his body being dead. (Absent in body, present with God). But I am thinking of it a little differently tonight. You and Cheryl and Jonathan and Daniel are a part of Dad, and therefore Dad is a part of you. I will use Jonathan here because I know him the best out of the 4. I think back to the day I walked down the aisle to Jonathan and watched the tears of joy run down his face. When something needs to be built or fixed, he knows how to do it and do it well. I listen to Jonathan describe his mountain biking experiences and his excitement over the most confusing calculus or physics problems. As I think of all these things, suddenly I realise he is your father all over again. Passion, expression, and knoweledge are not lost. I know these things and other parts of who dad is live in all of you. It is so cool to watch. When Dad passes, we don't just have the memory of who he was to rejoyce in but also the wonderful parts of him that continue to live in everyone one of you. We can watch all the siblings everyday and find a moment to say, "That's Dad!" And smile because we love that part of Dad so much.

    Well I am sorry my "few thoughts" turned out to be a lot. I hope I have expressed myself ok cuz I'm not always great about writing.
    I love you so stinkin much Karen. I wish I could just be there to hug you, but I can't so I will give you an internet hug until I can wrap my arms around you soon!!

    Love you all!!!

  5. Bethany, I am speechless. you have given so much in your insights. i am so very grateful for the amazing thoughts you have shared and i will work hard to integrate them into my perspectives about dad.

    you are precious to me and i am SOO glad that crazy brother of mine decided to take that speech class and had the good sense to take notes on the speeches -- and the speakers! he's got good taste :-) miss you and see you soon!