Be Still My Soul

It’s February.  We’ve turned another page in the calendar…I shared recently that I feel stuck between two epic life experiences, the loss of a child and a terminal diagnosis, which makes the passage of time complicated.  The challenge to live in the moment and not get overwhelmed by the grief of the past or the anguish of the future continues to require a daily conscious effort.  Embracing “today” continues to be the priority.

The past couple of weeks have been filled with a balance of time with good friends and family along with continued disease management.  My permanent port was placed on Friday January 26th and my second round of Radicava infusions started today with the new port.  The port has been more tender and cumbersome than I expected but it is healing nicely and, I suspect, will become second nature in time.  I also started to take a low dose anti-depressant medication which seems to be helping to take the edge off a bit.

At the urging of my local neurologist, Rolf and I visited the multi-disciplinary ALS clinic at Cedars Sinai in Los Angeles on January 31st  (I’m including Rolf’s detailed notes from the visit below for our records.)   I can’t say I had a strong felt need to be assessed again and I wasn’t particularly motivated to make the trek down to Cedars but we did get some helpful information and I’ll probably go again in 6 months.  The sobering reality that is reaffirmed with every consultation I go to is that no matter the state of the art facility or the resources at hand, all anyone can really offer me is confirmation that this is a “devastating” diagnosis and the promise to keep me comfortable down the line.  Ugh.  There’s a big part of me that wants to gracefully back off and just live my life out naturally without medical intervention but at the same time I have this Charlie Brown-esque hopefulness that maybe, next time, the football will stay put…that maybe our determination and commitment to the process will result in something tangible.  I don’t know…I wish I could make sense of it all…I wish I had a strong feeling one way or the other and didn’t respond to each recommendation with “well, it couldn’t hurt”…I wish it wasn’t all so vague and subjective.  Blah, Blah!!


Cedars-Sinai ALS Clinic visit summary

On Wednesday (1/31), we visited the Cedars-Sinai ALS Clinic.  We were told ahead of time that we were only scheduled for a “consultation” and not the full clinic, as insurance will only approve the latter after a referral from an initial visit with a neurologist.  Even so, Dr. DaSilva called ahead to see if a few other specialists would be able to stop by while we were there and we were very glad this was the case–made the drive worthwhile.  We arrived at Cedars at 8:45, got checked in shortly after 9 and were quickly taken to an exam room–where we stayed until almost 1pm.  There were a few breaks of 15 min or so, but for the most part it was a steady parade of doctors, therapists and a few of what I call “PUPs” (People of Unclear Purpose–hospitals are full of clipboard carrying mystery people that come in and ask you questions.)

We started with a pulmonary function test and then Dr. Elsayegh (Pulmonologist) came in for a consult.  There was good news here as Dr. E explained that the lungs are a key determinant in ALS.  As difficult as it is to lose functionality of extremities, etc., when the muscles that facilitate breathing get impaired, then major interventions have to be considered (breathing machines, traches, etc).  The good news here is that Trish’s lungs function is exceptionally good.  I forget the exact units, but typical lungs function at 80% and when things decrease to 60 it gets problematic.  Trish was at 102 (probably thanks to all her singing), which means there’s considerable margin for her. While no one can predict how quickly the disease progresses in any individual, this could make for more of a time window.

After that, we got a very thorough exam from the neuro fellow before Dr. Lewis (Neuro) came in.  Dr. Lewis was unhurried and spent quite a bit of time with us doing his own exam, answering questions, and explaining research studies.  It’s reassuring to have the attention of a very intelligent and compassionate expert, but if only he didn’t have to employ his gift of communicating clearly and caringly about really difficult realities:  it’s a devastating diagnosis, there are no cures, no clinical trial out there is anywhere close to landing on a cure.  There are two research studies Cedars is conducting that Trish agreed to participate in as they only involved interviewing and a blood draw, so Dr. Lewis spent even longer with us conducting the study exam and interview.

After that came a speech therapist, dietician, ALS Association rep and probably a few more people I’m forgetting. The whole session was clearly being coordinated and there seemed to be good communication between the specialists, which was both efficient and caring.  It’s impossible to tell the story of Trish’s diagnosis without bringing in Rudy’s death in July, so it was a comfort to not have to repeat the story too many times–most people came in aware and led off with compassion.

I can’t say we didn’t walk away a bit disappointed.  We’ve learned from HLHS and ALS that, as much as you try to keep grounded and aware that a diagnosis is terminal, there’s still a part of you that goes into every appointment wishing you’d hear someone tell you there’s a cure.  But it is what it is.  What we can be thankful for is the assurance that we’ve got good care.  The Cedars team would see us every three months if we’d like but since so much of what they said affirmed the care we are getting here in Santa Barbara, for now we will plan on seeing them every six months–unless a need arises before then.


I was going through some old CDs the other day and came across an original CD my friend Grace recorded over 15 years ago!  She invited me to sing two of her songs on the project and I was struck by the timeliness of them for me now…kind of prophetic and a sweet encouragement from a young Trish and Grace…

Closer To His Heart:

Be Still My Soul:

Speaking of encouragement, here’s some more…

My niece Rachel and her new hubby Josh flew in for a quick visit from Nashville. Of course, we had to make a stop at Kyle’s Kitchen…Rudy showed up and photo bombed this pic. 😉
We got a rare glimpse into Wilson’s ROTC world with these great pics from a Ranger Challenge he participated in a couple of weeks ago. ‘So proud Wilson!!



I’m being well taken care of on so many fronts and a great example of that is my good friend Rick who went above and beyond to make sure I have a secure cup holder on my walker and a custom-made ramp up to the worship platform at church!  🙂  Ha ha!  I am blessed and I’m so very grateful for the ongoing show of support from so many…as we’ve been reminded multiple times this past month at all my appointments, this is going to be a long road and I’m so grateful the Geylings aren’t doing it alone!!

Thank you for the ramp love Rick!!


Inspired Creativity

The kids returned to school today (except Rudy…he has one more day of vacation), the Christmas decorations are all packed up and stored for next year (except for the Christmas tree…not quite ready to take EVERYTHING down yet) and I’m up and at ’em this morning ready to tackle the list of “to dos” (except I may just do today in my pajamas…not quite ready to get dressed).  🙂

The Wilsons flew back to Kansas on Saturday and Rudy had the longest nap on record Saturday afternoon after they left!  Ha Ha  As is our MO, we packed a lot into our 6 days of cousin fun and are grateful for the fun memories made.

Family photo at the Reagan Presidential Library
Family photo at the Reagan Presidential Library
Presidential Library selfie!
Presidential Library selfie!
Flannel fun!
Flannel fun!


A Christmas vacation well spent!
A Christmas vacation well spent!

Rudy was gifted a sweet tribute this past weekend as well…a friend from church recorded a song he wrote for Rudy and gave us a copy (I’ve attached it below).

It’s always such a blessing to see (or hear) the creativity inspired by Rudy.  We’ve received a handful of gifts of love over the years that were all inspired by Rudy’s energy, determination…smile.

Remember CeCe VanNortwick’s Rudy’s Heart?

Rudy's Heart...all dolled up!

And Steve Subject’s portrait after Rudy’s Wish Trip?


And, of course, Greg Lawler’s photographs that flood this blog.

This is one of the first pics Greg took of Rudy.
This is one of the first pics Greg took of Rudy.

It touches me deeply to experience how others see our boy.  I say “experience” because that is exactly what an expression of creativity is…AN EXPERIENCE…a moment in time captured by the artist that tells a story filled with emotion and depth of thought if you explore it long enough.

Thank you, dear friends, for the many thoughtful gifts of love and creativity that we’ve received over the years that continue to encourage and bless our family…especially as we start a new year…another year of unknowns but also another opportunity to live in faith and hope.  I wonder what will inspire us in 2015?  I pray we’ll have the presence of mind to stop and experience the precious moments that can easily be missed and be transformed by them.  May your 2015 be an inspired year filled with beauty and growth too!  🙂

Here’s Greg and Kristin Kirchmaier’s song:

Spring Has Sprung!

I know it doesn’t feel like it in many parts of the country but spring has definitely sprung in Goleta!  After several weeks of summer-like temps, it’s actually cooled down a bit this week feeling more like spring.  Rolf’s roses are in full bloom and we might see a little rain today.  The kids’ break from school has been consumed with house projects so far, but we have some fun planned for the latter half of the week.  🙂

Spring is going to have special meaning this year as Livy approaches her 6th grade promotion and our family says goodbye to the elementary school experience as we have known it.  We’re enjoying and taking special note of all the fun La Patera traditions that’ll we’ll miss when Olivia moves on to Jr High.  The annual jog-a-thon is definitely one of our favorites!  🙂

Olivia's strong showing at La Patera's annual jog-a-thon!
Olivia’s strong showing at La Patera’s annual jog-a-thon!

Rudy and I went to cheer the kids on at the jog-a-thon and ran into Miss Grant’s 5th grade class.  We’re excited to be adding another day to Rudy’s La Patera schedule next week and discovered that Miss Grant’s students are big buddies to Rudy’s Kindergarten classmates which means Rudy will get to participate in big buddy activities with them.  When I asked the kids who might want to be Rudy’s big buddy, this is the response I got!  So sweet!!   Yay!

Miss Grant's 5th grade class ROCKS!
Miss Grant’s 5th grade class ROCKS!

…a little more birthday fun with Max as we ring in a new season.

...a belated 15th Bday celebration with Max and  friends!
…a belated 15th Bday celebration with Max and friends!

A special milestone passed for me this week too.  I was invited to speak at Westmont College’s chapel service on Monday and was both blessed and challenged by the experience.  Speaking in front of a gymnasium packed with college students is definitely out of my comfort zone and I struggled to discern what to share and how to share it but the experience was good for me…a good process to push through.  Greg Lawler came and, sweetly, took pictures for us…as always, I’m sure glad he did because he captured some precious moments I’d sure like to remember…

…a little pre-chapel briefing with Ben Patterson (and Max on the Gameboy he unearthed during his room purge the day before!  Love it!!!)
…a little pre-chapel briefing with Ben Patterson (and Max on the ol’school Gameboy he unearthed during his room purge the day before! Love it!!!)
Rudy getting the "wiggles" out with Wilson and Olivia.
Rudy getting the “wiggles” out with Wilson and Olivia.
Rolf titled this one "Big bro loves Lil' bro"…definitely!  #puresweetness
Rolf titled this one “Big bro loves Lil’ bro”…definitely! #puresweetness
...a handful of friends came and shared in the morning with our family…so grateful!
…a handful of friends came and shared in the morning with our family…so grateful!
Westmont Chapel March 24, 2014
Westmont Chapel March 24, 2014

A video and audio recording of my presentation are posted in the chapel archives on Westmont’s website.  If you’re interested in watching the video click here.

When we got home from Westmont on Monday, I asked Wilson what he thought and he said, “Is Rudy going to die?” to which I responded “REALLY?”.  And he said “I just don’t think about Rudy being so close to death.”  “Well”, I said, “that’s the challenge we face as we approach life…rather than dwelling on potentially tragic realities, we choose to live life one day at a time and, hopefully, live it to the fullest.  I believe, though, that God has longterm plans for Rudy’s life even though the odds may not be in his favor.”  My approach to Rudy from day 1 has been to fully expect the best but prepare my heart for the worst.  I don’t know if it’s the most emotionally sound approach to critical situations but it has taught me to not pull away from pain out of fear but to embrace it with the assurance that God is by my side…no matter the outcome. It’s interesting to me that even though the hours of preparation and the talk are over, I’m still processing as I’m feeling vulnerable and experiencing a bit of an emotional let down after the fact.  Hmmmm, I’m left with lots to still ponder as I decompress from my “chapel speaker” experience…to be continued!

For now, though, it’s time to enjoy a little spring break!  🙂  Happy Spring Everybody!!



Mourning Opa…


We are grieving the loss of Rolf’s dad today.  After a long battle with Parkinsons, Franz had a stroke 10 days ago and passed away yesterday (Monday), February 17, 2014…he was 87.  I am grateful that Rolf was able to fly out Sunday and arrive in Auburn in time to be with his family and spend time at his dad’s side before he passed.  Franz will be missed.  He was a good man who cared for his family, was passionate about his life’s work as an engineer, made significant professional contributions in his field and modeled commitment throughout his life to his wife of 52 years, his work, his four children and later to his 15 grandchildren.

I loved my father-in-law  and appreciated his presence in my life.  I’m grateful for the ways he welcomed me into his family and demonstrated his care and concern for my family.   Franz was a man of contradictions which is what made him so interesting to me…at first glance, I don’t think anyone would have described him as a huge risk-taker…he was conservative with his resources, careful in his choices and methodical in his approach to life and yet he made some pretty bold moves in his life that included leaving his family in China and Europe as a young college student to establish a new life in America – pretty risky if you ask me!

Franz could also be described as extremely intelligent – he had an engineer’s mind that could easily digest all things technical.   If you asked him a simple question, more often than not his answer would be filled with references to physics and other branches of science you didn’t even know applied! 🙂  Opa may have had the mind of an engineer but he also had the hand of an artist and he delighted us in his later years with his renderings of familiar places and faces (Rolf’s roses were a favorite subject during visits to Goleta).

Opa's sketch of Max in 2001.
Opa’s sketch of Max in 2001.

I knew Franz to be a man of many words…if you got him talking about his fascinating family history, he could spin a detailed yarn for hours at the dinner table…and yet, I also knew him to be a man of few words…he chose his words carefully and was thoughtful (maybe even sparing) in his affirmation…which made notes like this one even more meaningful:


Losing Opa makes me miss my Dad a little more today too.  I am blessed to have had them both in my life.

Schlaf gut Opa!  Schlaf in himmlischer Ruh…Liebe, Trish

Opa getting a little Rudy-love.
Opa getting a little Rudy-love.

“Merciful Jesus, Lamb of God,  Grant him rest…everlasting rest.”

(an abbreviated translation of “Pie Jesu”…my version below recorded for the service)

Christmas Eve 2010

Well, it’s 11pm and its time to wind things down here in the Geyling household.  Rudy finally fell asleep after a very long day with no naps and the big kids are camping out in Max’s room watching “A Christmas Story”.  Our day started out this morning with donuts, caroling and zany Christmas games with the women of Bethel House and ended with the Christmas Eve service at our church.  Once again, we stop in the midst of all the excitement and reflect on all we have for which we are thankful…you certainly make that list!  Merry Christmas dear friends and family…we wish you the very best this holiday weekend and the peace of God’s presence in all that you do.  Christmas blessings…

Everybody dressed in their Christmas best...
Showing off the traditional Christmas PJs and matching knit socks!!
Poor Rolf didn't get a full set of Christmas PJs this year but what he did get goes nicely with his new knit socks!!

Okay, so there really isn’t a good segue after that picture but I did want to share one last Christmas tradition.  Christmastime gives me a few more opportunities than usual to sing at church and Rescue Mission events with my friend Darlene.  This year we decided to make a simple recording of a few tracks (Thanks Jeremy and Jake!).  Here’s our favorite…

Sleep in heavenly peace everyone!


Two Super Stars

I just had to post the following link to a radio interview my dad did this week.   If you have a minute, it’s a great interview for a wonderful cause.  Dad is participating in the Head for the Cure 5K Race/Walk ( on September 13th in Lawrence, KS in support of brain cancer research.  Although he will be starting a new chemotherapy regimen this month, his doctor has given him the go-ahead to participate with a few precautions in place.  Once again we cheer, “Run, Grandpa, Run”!!!

To hear the interview, click here, and then click the “Dick Wilson KLWN Radio” Bar to start!

Since we’re on the subject of links…here’s one more for you.  Rudy made Greg Lawler’s photo blog again (not like we’re counting or anything!)…boy, do I wish I had his gift for capturing precious moments.  Click Here!

Music and Eulogy for Uncle Rixie

I promised that I would post audio clips of Trish singing at Uncle Rixie’s memorial service on Wednesday up at Stanford (thanks for the help, Greg).  Life has been such a blur and is at times so overflowing with the emotions of this journey that it wasn’t really until about Friday that some of the reality of Uncle Rixie not being with us anymore sunk in.  So, while it might be a bit off-topic for this blog, I’m including the eulogy I gave at the end of the service after six others had captured him so well with their tributes.  Rudy is understandably the focus of so much of our emotional energy right now, but I don’t want the passing of someone so significant to get lost in the blur.

The audio tracks might take a few seconds to buffer, but wait and enjoy.  It’s worth noting that Trish sung these without a mic–the acoustics of that place were amazing!

It is Well with My Soul

All people That on Earth do Dwell


I am so grateful for the way those who have shared have remembered important spheres of Rixie’s life with such vividness and warmth.  We were planning this service and thinking about how special it was to have it in this church on this campus that Rixie loved so dearly, and now having sat through it, I can’t help but think how much Rixie would have loved to be here in person.  Like no one else, he would have received these tributes with such graciousness and quiet pride.  In his own trademark way, he would have made each of us feel like we were the person he was most honored to have in attendance.


Rixie was unique in that he was so consistent.  We have a tendency to take on different personas as we move from realms of public and private, but whether he was with close friends, family or interacting at some of the highest levels of academia, Rixie was always his winsome and endearing self.  He endeared himself to people of great importance, but also to people of more modest station—like students, secretaries and some very fortunate kids.  In 1947, my father was one such student and I became one of those fortunate kids.  Rixie and Elliott became surrogate grandparents who brought joy and creativity into our lives.


·             At one of the first meetings I can remember when I was about five years old, I proudly entered our living room in my cowboy outfit and greeted Rixie with a “Howdy, Pardner!”  From then on, he decided we should adopt the monikers of “Big Pardner” and “Little Pardner”; which is how we addressed each other regularly for the rest of his life.


·             Around the time I was eight, I had just gotten my first pack of football cards and was showing them to Rixie.  He was immediately concerned that I did not have any players that had graduated from Stanford, so the next morning he asked my mom to drop us off at Woolworth so we could get a couple of packs of ten.  We ripped open the packs out on the sidewalk and found no Stanford graduates.  So Rixie kept sending me in with quarter after quarter until we had bought at least a dozen packs and got us a Bob Moore and a Jim Plunkett—not to mention six sticks of gum each that we put in our mouths all at the same time and sat on the curb chewing until Mom came back to pick us up.


·             While I know Stanford gave Rixie an office for other reasons, to me it was where he went to write me letters and I always got excited when I got something in the mail from my penpal at Bowman Alumni House.  His letters were always creative and they forced me to be the same—at first it was Big Pardner writing to Lil Pardner about life on the trail, but after a few years we started publishing newspapers—his was the “Governor’s Gazette” and mine was the “Post House Packet” and we exchanged our information via articles in our newspapers.  I remember there were items about what the fruit trees were producing in the garden on Governor’s Lane; travel reports from the Danube or the Delta Queen; the sports section was devoted exclusively to Stanford sports and the editorial page usually included some erudite diatribe about Cal.


·             As my grandparents lived overseas or were deceased, Rixie was attentive to me and invested in me over my lifetime like few grandfathers would have.  He encouraged me and I suspect would have been supportive of any course I chose, but there was probably some subtle coaxing in the Stanford t-shirts I would get for every birthday and Christmas.


·             Rixie said I got into Stanford on my own, but as wonderful as I may have been, I suspect it was hard for Dean Fetter to overlook the letter from a certain predecessor that got attached to my application.  And in my years on the campus, I always looked forward to Tuesday nights when the orange Rabbit would pull up in front of my dorm and Rixie would take me out to dinner just like he had taken out my father 40 years before.


In his own understated way, Rixie was very proud to live one hundred years.  He saw a lot of things and was able to remember astounding details about people, places and events and, as a historian, was able to provide context so that you came away feeling much smarter than you actually were.  Rixie and I were tickled during one of our last conversations over the fact that he was retired almost all of my life.  But that doesn’t mean he stopped being a professor; he may not have been grading papers or giving lectures, but he never stopped teaching.


The text Rixie asked that Schaff read from the Apostle Paul (ICor13) elaborates profoundly on the concept of love.  They say that one can have a full life, rich with experiences and possessions, but without love there is emptiness.  Rixie was a loving person and if we look at his life, he gave us profound lessons about love:

·             He taught us that a deep love of people can reward one with an expansive and close extended family even if one hasn’t any biological children.

·             He taught us that love—expressed in interest, genuine concern and warmth—turns co-workers and colleagues into lifelong friends.

·             He taught us that love, in the form of diligence, wisdom and service, can be the bedrock of a tremendously successful and visionary career.

·             He taught us that love, manifest as winsomeness and warmth, can actually be more effective in influencing people than brashness and assertiveness ever could.

·             He taught us love, lived out in a lifelong devotion to an institution, can and will continue to impact thousands in ways unimaginable for years to come.


The professor never stopped teaching, my hope is that I’ll be a good student and never stop living out what we’ve learned from him.