TO CATCH YOU UP TO SPEED...

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, August 12, 2010

WELCOME!

I'm so glad you've come.  My dad is an amazing man, and his life has taken some unbelievable turns as of late.  It's been almost all I can do to absorb it all, and initiate a few texts to update people I already dialog with on a regular basis.  And of course, (my all time fav!), answer any calls or texts that come my way. 

Well the other day, I received a delightful call from my Uncle Karl.  He took time to absorb all my updates, and then gave much needed thoughtful encouragement and TLC.  As we concluded our conversation, he said that he would love ongoing updates.  I asked him what format works best for him (I know not everyone is addicted to texting like I am!).  He said he really appreciated his sister's daily emails when she was here for a visit several weeks ago. 

Kinda took me by surprise...Uncle Karl wanting this format.  Gail's visit was during a most unbelievable time in Dad's life/death/life journey, and I was with Gail in the same room as she composed several of her emails.  She was quite honest -- vulnerable really (this coming from me, a girl whose "personal-privacy" meter is set on ultra-high!).  I couldn't imagine doing it myself but was glad she had found herself reaching out so easily to her larger support systems.

But now here was someone asking me to fill her shoes!  Intimidated by the idea, I quickly came back to the conversation at hand. It was my Uncle KARL on the other line.  Logical, efficient Karl (traits we Bruces are known and loved for) -- not one of my therapist friends!  Rather than self-debate further, I asked straight out: "So...what did you like about Gail's emails?"

I thought he'd say something about the fact that they arrived daily. Or that email is faster than phone calls  (that logic and efficiency thing again).  But to my surprise, my aunt's personalization, that fact that she shared a piece of her soul, was really what he valued most. It gave him a way to live within her experience. And it strengthened his sense of family. Of spiritual community.

Well. Ok.  I'd give it a go.  But 10 days passed, and no emails. Why can't I get to something so important?  Don't think it's my privacy issues...while I have continued on my mostly solo path (beyond Mom, Tim and my  siblings), I am working hard to expand outside of my immediate bubble. I do believe what Uncle Karl said, that we need a community to come alongside us as we struggle through some of life's hardest gifts. Must be the email thing, as this is my second weakest link (returning voicemails is my first).

But the idea of community...it has gradually dawned on me that I know a lot about this, at least in the online dimension.  My recent philospophical understanding of social networking, and my deep appreciation of it, is thanks to our amazing nephew Patrick and neice Amy (who just spent a wonderful year with us at our business, catching us up to the wonders of current day technology--admidst a ton of fun).  I realized that the format Uncle Karl would like is a lot like, well, a blog.

And I can do blogs. In fact, my brother Daniel and I spent all summer figuring them out. (http://www.nestedart.com/ is the happy fruit of our labor.) I love the blog way! You get to write it the way that you see it. You take a situation and fill the telling of it completely full of interpretations, impressions, insights. It's not about the facts of the matter, really -- although I'm the first to admit that a well-crafted fact or two doesn't hurt a post much at all.

The idea of sharing the details of my dad's situation in this style caught my attention. Being able to place my spin on things would soften the sting of the straight up, cold cruel facts. Certainly for the teller, hopefully for the reader.  So, a simple question to brother Daniel tonight -- "Is it easy to set up a Dad Blog?" -- and my problem is solved. (For Daniel, it's all easy. The hard part is getting me up to speed on what just happened.)

Ok, Uncle, so here it is.  My best attempt to provide dad updates from my heart.  I'll take the plunge, for family.  Love you lots...and thanks for asking.  And, of course, for calling.

Love to all!!!

_______________________________________

p.s.  apparently, this is harder than i thought!  As I preview the post, I see that I am stalling on my official update.  A few facts, please.  But -- where to begin?  Truly I find it difficult to put into words my personal sense of what is happening with dad. 

So I'll pretend, Uncle, that you are asking me questions.  We'll start with the facts:

* Several days ago dad was transferred back to the Arizona Veteran Home.  This is the place dad left several weeks ago when his massive "electrical storm" hit. (Was it really just a massive grand mal seizure?  A single seizure, even a grand mal, is not known to create damage like this.)

* Dad was supposed to go to Hospice, but during the several days it took to prepare for the transition, his status improved so that he was no longer appropriate. Again, very unexpected.  (One of those days, I was talking to him after PT and OT had transferred him into a reclining hospital-bed chair.  The palliative care --end of life -- nurse came by to check on him and I saw a near-concealed look of shock pass over her face.  She leaned toward him and said quietly, "You ARE the Mystery Man.")  I just smiled.

*  Surprisingly, dad has been authorized for therapy: Physical, Occupational and Speech.  They are working VERY hard to maximize his functional capacity, but are not sure how long they will be able to justify therapy.  Why surprisingly?  Because normally people who are at his low level don't receive therapy.  Why "not sure"? Because people at his level coming into subacute therapy usually "peak out" their potential rather quickly.  And also because, with dad, we have learned to expect the unexpected.


Will save my sense of it all for another time.  Must go for now  Again, xox to all. 

8 comments:

  1. http://www.facebook.com/album.php?aid=174227&id=657389389&l=1c2399edde

    Here is an album of pictures from Dad's AF career. Thanks so much for keeping us up to speed!

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  2. Karen,

    I am thrilled that you are doing this. It has been so hard to be separated by so many miles away and feel "out of the loop." (Humm, "out of the loop." Could that be the loop of a roller coaster? Me thinks, perhaps.)

    I also loved learning about your other blog, http://www.nestedart.com . How about putting up a side bar with links to any blogs related to the family. It'd be nice to have them all in one place. I haven't blogged since March. I'm planning to begin again in September.

    Here are the addresses to Mike's and mine:
    Treasure Hunt: http://gailbhyatt.wordpress.com/
    Michael Hyatt: http://michaelhyatt.com/

    I think the Bruces are an amazing family. We're made up of creative, unique, gifted individuals and we have the privilege of being tied together by our very blood. We're spread out over lots of miles so anything we can do to stay connected, share in each other's lives and learn from one another is well worth the effort.

    Thank you again for taking the initiative to do this. And I thank Phil too, for sticking around, for without him this would never happen. Nothing is wasted.

    Love you all so much,
    Gail

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  3. So I am new to the blogging world as well, I suppose we should feel free put our thoughts on Dad's situation here.

    For me it has been challenging to be in and out of the situation as I am coming home for visits a couple times every year. I guess I had been in some kind of denial about his situation and hoping it would improve significantly. This summer changed my perspective completely.

    For me coming to peace with Dad's condition started at the beginning of the summer with the onset of his most recent challenges, and finished while I was at AFROTC Field Training, our four weeks of boot camp.

    My commanding officer pulled me aside during a Monday evening land nav debrief. He told me something had happened to my dad, and took me to an empty tent to call home. Hearing what had happened, I knew right then that he was not going to make it and that I would probably have to leave to come home for services.

    I guess you come to terms with a situation really fast when you are 1500 miles away and have to get a special exception from your commanding officer to even call home and check on the status. Because I had spent alot of time with Dad before leaving, I wasn't that emotionally distraught about the situation. Standing in formation in the evening for retreat, wondering if Dad was alive or not, felt more surreal than anything - almost like I was in a movie. I had kept a set of Dad's dogtags in my backpack, and on the evening I heard about the situation, I started wearing them every day.

    Monday evening, I heard first of Dad's condition, then Wednesday evening I called again and found that they were removing the ventilator Thursday. To my surprise when I called home Thursday evening, he was recuperating. I was grateful to be able to finish training and come back with Dad off of life support and in the regular part of the hospital.

    The main reason I share this is just to relate how I went from a state of denial to acceptance of the situation. I know we all have to come to peace with whatever the future holds for Dad in our own way and time.

    I know that my experience sounds awful, but like I said earlier it was more surreal than stressful, and I was able to keep my head on straight and do well in the training environment. For me I guess it was just the right way to finally come to peace with Dad's condition once and for all.

    I traveled 1500 miles and had my cell phone confiscated for 28 days to come to terms with Dad's condition. I am sure that the rest of the family can do the same in a much less complex manner.

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  4. Some old family pics, pardon the extraneous ones. A few good ones of Dad from years past.

    http://www.facebook.com/album.php?aid=26656&id=657389389&l=6a75c7513e

    http://www.facebook.com/album.php?aid=27030&id=657389389&l=8e6d2db723

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  5. I love that you are doing this, Karen. I have experienced everything second-hand through Gail. I have really felt compelled to pray. I don't know what kind of story God is telling through this, but it is certainly fully of surprises!

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  6. Karen, bless you for taking this on, you're doing a remarkable job. I realized that too many phone calls to sister Patty were not in her best interests, having to verbalize everything time and again, yet we felt so far away, unable to help, desperate to know how Phil was doing and how to pray. So following your "Phil's Journey" blog is a blessing

    I notice Gail and Mike wrote their comments on your two grandfathers' birthdays: Grandpa Sid's, Aug.13th and Gramps', Aug. 15th. Oh that your dad could also have more quality time with his grandchildren in years to come. We come to expect the unexpected, after all.

    Thank you, Karen, for your informative, intuitive, inspiring and insightful posts. I know it's not easy, but so appreciated.

    My love and prayers to you all, Aunt Sandi

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  7. TO GAIL: We have the Family Links sidebar up and going now. Great idea! Can you let those blogging daughters of yours know that we are up and running! Will be great to have them here and represented as well :-)

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  8. Yee Haw!

    Here are two more to add:
    http://www.meghmiller.com/
    http://joeljmiller.com/

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