Olivia’s Graduation

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Hi Friends,

Been quite awhile-and this probably won’t mark a resumption of posts–but I did want to commemorate Olivia’s graduation from Dos Pueblos High this past week.  Certainly significant all on its own, but specifically in our case.  Shortly after Trish’s ALS diagnosis, she came across a statistic that average life expectancy was 30 months.  Counting ahead on the calendar, 30 months landed right on June 2020, so that became a target, or at least a hopeful goal of sorts.  She really wanted to make it to Olivia’s graduation.  She loved the boys’ Senior years with all their traditions and celebrations, and as much as she accepted how much of life she was going to miss, she really wanted to be there for this.

Her medical team appreciated her articulating such a milestone.  While there was counsel about not setting unrealistic goals (ie, “we’re gonna beat this”), the doctor said it could be very helpful in guiding some of the decisions we might make about interventions, etc.  This seemed reasonable and attainable.  After all, it was the average and we like to think of ourselves as “above average”.   

At an appointment a year ago, Trish reminded the doctor of this goal.  I got a sick feeling:  she’s not going to make it.  The decline was too fast.  Even if it were possible to survive a whole year, it was unimaginable how much the disease could rob her in that much time.  Despite our doc being a composed professional, I noticed the slightest sighing hesitation, concerning glances when we could make eye contact, and an empathetic squeeze on my forearm as she walked us out of the office.  She was seeing the same thing I was seeing.

Given what it meant to Trish to tell her story here, I want to properly document the milestone she hoped to see in the way she would do it (so buckle in for a long post with plenty of Greg’s pictures.)  While we’d rather have Trish with us, the COVID pandemic wiping so much off the calendar softens the blow of her missing so much.  As our family has learned that some of the most beautiful celebrations come amidst unwanted circumstances, this certainly holds true for the way Olivia closed out her high school years.

The week was kicked off by a celebration in an undisclosed off-campus location for an amazing group of lacrosse teammates.

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I suspect there are a number of lacrosse teams in Southern California who are pretty relieved that COVID spared them a beating from these ladies.  ;-). We are so grateful that Livy discovered the sport she loves and gets to keep playing in college, but more than that, we’re grateful for a team of incredibly caring, fun, smart and supportive girls; led by coaches who embody all of that.

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Coach Jess presents Livy with her stadium banner

Then came graduation day.  First we took some pictures at the beach:

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The LAX girls with their leg pose…
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I even got into one of the pictures!!!
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No, actually I did.

Then, it was off to the high school.  Thanks to the amazing work and dedication of the faculty, Dos Pueblos was able to pull off an incredible drive-in graduation.  Every graduate got one carload of family, and cars were spaced in the parking lot with the event broadcast on FM radio with projection on the outside walls of the Performing Arts Center.

But first, we got to drive around the campus lined by cheering teachers:

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As it was a special occasion, we took the Tesla!  #notourTesla

Lots of smiling, waving and cheering from the teachers that taught not only Olivia, but Max and Wilson, over the last nine years.  We spotted Coaches Sam and Jess (along with Rob and Jocey), who appeared to be playing it cool.

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But that didn’t last–

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This woman can educate our kids all she wants!

Then we got our spot in the parking lot and Livy took her seat on the roof as we waited for the sun to set.

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Once it got dark around 9 and everyone could see the projections, the ceremony got underway.  Amidst the speeches were some surprise celebrity messages:

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DP “Alum” Katy Perry (didn’t graduate but we get lots of mileage for her one semester)
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Jack Johnson (whose wife was a DP teacher) brought aloha and a song

The graduates got to go up and walk the stage, provided the maintained social distance and then promptly returned to their cars.

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(Mostly)

A beautiful and unforgettable night.

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So proud of this girl!

When we were house shopping back in 2007, Olivia was starting Kindergarten.  While we were fortunate to have a great local elementary school (Yay, La Patera Tigers!), what drove our final decision was the chance for our kids to go to Goleta Valley Jr. High and Dos Pueblos High School.  We could not be more pleased with the outcome, and frankly it’s hard to imagine that our last kid just finished.  I am so glad that our final memory of the school will leave such a special imprint on us.  We’ll never forget Olivia’s graduation and how it embodied the creativity, dedication and excellence of the people who have poured so much into our kids.

But things didn’t end there.  There was still the matter of the cancelled prom.  Aside from missing out on a night of fun, there had to be some reason to wear the dresses all of the girls got months in advance.  So, Olivia and her creative friends organized their own backyard prom.  There was an excellent dinner (served by the Wilcox siblings) and dancing under the stars, after-prom games and contests until 3am, some kind of rest period in tents in another backyard and then Sunday morning brunch!  As I can barely remember one detail from my senior prom, I don’t think these kids will have any problem.

Way more pictures than I can post here, but they made lots of stops.

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A group shot at the SB Courthouse

 

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Apparently every photo session must include the lax girls doing their leg thing
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These Kindergarten classmates have grown!  (and glad they stayed friends.  Macey’s dad takes good pictures)
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No way I was gonna miss out on the Daddy dance!

The last week has reminded me that there’s never a perfect moment for celebration.  All we have is imperfection.  Yet within it, we do the best we can.  Somehow, laughter can exist in the midst of sadness.  Even in the midst of grief, we can find things to rejoice over.  Sometimes I have to work hard to find it, and other times celebration requires an almost defiant resolve.  Trish did that.  We did that again and again throughout Rudy’s life.  There’s more beauty among the heartbreak than we might think.  Part of me wishes it didn’t have to be so, but without it the heartbreak might completely crush us.

It wasn’t the perfect graduation we envisioned, but it was good.  It was rich.  We weren’t the only family at DP to experience heartbreak this year.  Ours was one of a number of tragedies that actually put the COVID upheaval into some kind of perspective.  But it was life-giving to be a part of a community that was faced with imperfection and, instead of dwelling on how many things weren’t right, figured out a way to acknowledge goodness in the midst of it.  I’m really grateful for that.

But most of all, I’m really proud of her.  Trish is too.

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Love you, Livy!

 

Patricia Dawn Geyling (2/27/1966-11/1/2019)

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Our Trish left us on Friday, Nov. 1, 2019, of complications due to ALS. She was 53. The great void she leaves is only because of the full life she lived. When she greeted us with her sparkling blue eyes, we instantly felt welcome.

Her laughter put us at ease, drew us in, and made us quickly move past being mere acquaintances to beloved friends. Her thoughtfulness made each one of us feel special. When she sang, we were captivated by her angelic voice and ushered into God’s presence.

Born Patricia Dawn Wilson on Feb. 27, 1966, in Arlington Heights, IL, Trish Geyling enjoyed the doting attention of her parents Richard Harry and Phyllis JoAn (Fink) Wilson, and her two older brothers Rick and Steve.

Armed with a loving, faith-filled, midwestern upbringing in Palatine, IL, and Indianapolis, IN, Trish is an alumna of Lawrence North High School (’84), Cottey College (AA ’86), Up With People (Cast C ’86-’87), and CSU Sacramento (BA English and TESOL Cert ’90).

After arriving in Sacramento to complete her education, she continued her California migration to San Diego (two years) and Los Angeles (15 years) before arriving in Goleta in 2007.

To know Trish was to be touched by a great love that overflowed from her relationship with Jesus.

From inner-city children and families in San Diego and Los Angeles while serving as a missionary with World Impact, to people spanning cultures and continents she met in her travels, to men and women seeking help at the Santa Barbara Rescue Mission, to church fellowships, school communities, special needs families, neighbors and more than a few fast-food employees, so many were blessed by her unique warmth and care.

In her music, jewelry-making and writing, she embodied the creativity of God.

In the way she served — in vocational ministry, volunteer roles, and simply by being sensitive to the needs of others — she demonstrated the depth of His concern.  Her commitment and discipline mirrored God’s consistent faithfulness to us.

Her tenderness was a touch of His love, and the way she brought celebration into everyday life, a reminder of His pleasure.

Even in the face of the profound challenges as the parent of a medically fragile child and subsequently her own terminal illness, Trish’s soul radiated joy in a way that caused ours to crave the fountain from which she drank.

Trish is survived by her husband of 26 years Rolf B. Geyling (president of the Santa Barbara Rescue Mission); her children 2nd Lt. Wilson T. Geyling, Maximilian R. Geyling and Olivia J. Geyling; mother JoAn Wilson; brothers Rick and Steve Wilson and their families; mother-in-law Helga Geyling; as well as Rolf’s three siblings and their families.

She is preceded in death by her nephew Seamus, niece Faoileann, dad Dick Wilson, father-in-law Franz Geyling and son Rudy.

A viewing will be hosted 4-7 p.m. Thursday, Nov. 14, at her home church Coast Community Church of the Nazarene, 4973 Via Los Santos, Santa Barbara.

The funeral service will be at noon Friday, Nov. 15, at Living Faith Church, 4597 Hollister Ave., Santa Barbara; carpooling recommended. Burial and family receiving immediately to follow the service at Goleta Cemetery, 44 S. San Antonio Road, Santa Barbara. All are welcome; bright colors encouraged (especially lavender and canary yellow).

Memorial donations in Trish’s honor can be made to the Santa Barbara Rescue Mission, 535 E. Yanonali St., Santa Barbara, 93103.

Memorial Service Information

Thank you for continuing to uphold our family during this season.  For planning purposes, here are the funeral details:

A viewing will be hosted on Thursday, November 14th from 4-7pm at Trish’s home church, Coast Community Church of the Nazarene (4973 Via Los Santos, Santa Barbara, CA 93111).  The funeral service will be held Friday, November 15th, noon, at Living Faith Church (4597 Hollister Avenue, Santa Barbara, CA 93110–carpooling recommended). Burial and family receiving immediately to follow the service at Goleta Cemetery (44 S San Antonio Rd, Santa Barbara, CA 93110).  All are welcome; bright colors encouraged.

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Even the most beautiful music has an end,
but her song was cut off far too abruptly.
Such a shame as I so loved the dance…

Patricia Dawn Geyling
2/27/1966-11/1/2019

Hospice and Highlights

Thanks so much for the kind messages and comments in response to our last post.  It’s overwhelming in a good way and even though we can’t reply to almost any of them, it is a huge comfort to know the incredible group of people near and far who are walking with us in this.

More than once this past two weeks, it’s been explained to me that “hospice is about more than just the end of life”.  Seems like a re-branding campaign that cratered before even reaching the end of the runway.  This isn’t all happening because Trish is under the weather.  The disease is visibly very present and progressing; seemingly robbing of her something everyday.  Cynicism aside, we are so grateful for skilled and compassionate guides walking us through scary and unfamiliar territory–much like those who came around us with a critically ill child.

The emphasis has been on keeping Trish comfortable and we’re so grateful that we’re able to do that here at home…but that doesn’t mean we were completely confined there.  Last weekend Olivia had a lacrosse tournament and I guess it would take something more than being on hospice to keep Trish away.

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Worth the effort to mobilize for a beautiful afternoon at the Polo Club.
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Glad that Uncle Steve, Aunt Michelle and Cousin Emma could come watch Livy and the Chargers!

Olivia’s week went from Beast to Beauty as this last Friday was the Homecoming Football game.  As most probably already know from social media posts, it turned out to be a storybook night…

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Arriving with the court at halftime….
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I knew she’d win, but did a pretty good job feigning surprise at the announcement.
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Dos Pueblos High’s 2019 Homecoming Queen
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I guess this makes us all royalty.

Hard to sum up such a week of extremes, but we’re just embracing whatever life throws at us.  It seems weird to have celebration alongside such struggle but that’s also what’s making it bearable.

 

Hospice Care

Hi friends.  Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week.  As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly.  Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.

As much as we knew this was coming, it’s certainly an adjustment.  Trish has long held that she wants to stay home and we want that for her as well.  Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.  

In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition.  ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage.  While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.

Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development.  So grateful for your love and prayer for Trish and our family.

God’s Living and Active Word

I’m not sure a passage of scripture has ever spoken more directly to my heart than the following Psalm from the new Passion Translation (TPT) of the Bible. If you have a minute, I want you to find a quiet space and read these verses out loud to yourself. Even though these words, I’m sure, were written solely for me today, I’m happy to share the blessing with you. 😉

Psalm 42 

42 I long to drink of you, O God,
drinking deeply from the streams of pleasure
flowing from your presence.
My longings overwhelm me for more of you!
My soul thirsts, pants, and longs for the living God.
I want to come and see the face of God.
Day and night my tears keep falling
and my heart keeps crying for your help
while my enemies mock me over and over, saying,
“Where is this God of yours? Why doesn’t he help you?”
So I speak over my heartbroken soul,
“Take courage. Remember when you used to be
right out front leading the procession of praise
when the great crowd of worshipers
gathered to go into the presence of the Lord?
You shouted with joy as the sound of passionate celebration
filled the air and the joyous multitude of lovers
honored the festival of the Lord!”
So then, my soul, why would you be depressed?
Why would you sink into despair?
Just keep hoping and waiting on God, your Savior.
For no matter what, I will still sing with praise,
for living before his face is my saving grace!
Here I am depressed and downcast.
Yet I will still remember you as I ponder the place
where your glory streams down from the mighty mountaintops, lofty and majestic—the mountains of your awesome presence.
My deep need calls out to the deep kindness of your love.
Your waterfall of weeping sent waves of sorrow
over my soul, carrying me away,
cascading over me like a thundering cataract.
Yet all day long God’s promises of love pour over me.
Through the night I sing his songs,
for my prayer to God has become my life.
I will say to God, “You are my mountain of strength;
how could you forget me?
Why must I suffer this vile oppression of my enemies—
these heartless tormentors who are out to kill me?”
10 Their wounding words pierce my heart
over and over while they say,
“Where is this God of yours?”
11 So I say to my soul,
“Don’t be discouraged. Don’t be disturbed.
For I know my God will break through for me.”
Then I’ll have plenty of reasons to praise him all over again.
Yes, living before his face is my saving grace!

Amen, amen and amen!

Rudy’s Birthday

Dear Rudy,

Today would have been your 11th birthday. I lay here nearly motionless, unable to celebrate you today the way I would like, which seems to add to my heartbreak. I wish I could spend the day doing your favorite activities, spending time with your favorite people, and eating your favorite foods. Instead, I’m forced to navigate today…still…quiet…with only my memories of you…how valuable those memories are to me now.

Know you are in every nook and cranny of our family’s existence. The reminders of you that surround us are both subtle and not-so-subtle…

I’m thinking of you, missing you, and sending my love always, big boy.

Relentless

September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.

If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.

We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.

A New First

Back in the day when it was uncool to kiss your mom in public, my kids had two options. They could either voluntarily give me a quick kiss on the cheek OR they had to endure a big attention-seeking kiss from me that often lingered way too long. I thought about that when Max headed back to school a couple of weeks ago. I laid motionless as he hugged and kissed me good-bye. Oh how I longed to wrap my arms around him, give him a big kiss and linger…for a really long time. I sure miss those simpler days.

I experienced a new first recently. I said “F&ck you!” to Rolf in anger…first time in 27 years…and, no, I wasn’t angry at my disease, I was straight up angry at Rolf. Fortunately the visceral impact was diminished quite a bit by the fact that I had to repeat myself five times and ultimately spell it out to be understood.

Speaking of visceral experiences, I also recently thought a little too long about taking my life. I can honestly say I have never felt that level of desperation in my lifetime. The urge passed and, of course, I can’t physically do it anyway but it is a fleeting thought made more complicated by the fact that physician-assisted suicide is legal in California. I know that a lot of people worked hard to get that law passed in 2016 and it brings comfort to some but selfishly I wish it wasn’t even an option because it feels like a strange carrot being dangled in front of my suffering body. That’s not how I want my story to end.

I spent a large portion of my adult life working hard to preserve life and I always lived with the mantra, “Where there is breath there is purpose.” In a perfect world I don’t think our bodies would outlive our minds or our minds would outlive our bodies. I envision we’d all just go to sleep and not wake up when our time came. But the world isn’t perfect and my convictions are being tested beyond what I ever dreamed. I’m learning over and over that life is one big exercise in discovering purpose and beauty in all the imperfection. I want to live my life out naturally and experience the purpose of my final moments in word but the living it out is hard and frightening. It’s a classic “easier said than done”. 🙂 Please pray for courage and joy and laughter and all things light and hopeful. I said to Rolf and a friend the other day that we won’t get through this unscathed or without a few war wounds along the way but it doesn’t have to define how this story ends. I will continue to count on there being purpose in every breath…especially when I consider who the Giver of my next breath is.

But, you know what? Even if my mantra is untrue and I actually outlive my purpose, I have to remind myself from time to time that there is great value in being present if only to see purpose being lived out in those I love, like I did this weekend watching Wilson preach…