18 Months

Today marks 18 months since we lost Rudy. The 25th of every month has an impact on my heart but today carries a bit more significance, for sure. A year and a half. It feels like a long time and, yet, it also feels like it was just yesterday. My mind and my heart can be transported to that ER in Guymon, OK in a blink and I am there with Rolf, the big sibs and our boy fully aware of what was happening as I experienced it unfold and in total disbelief at the same time.

I only see Rudy in my memories. Rolf is having new visions of Rudy in his dreams…comforting in the moment but heartbreaking in the wake of the dream as Rolf so eloquently describes in his latest poem:

This
Is where I see you now.

It’s all I’ve got.

In the last moments of the night
You’re suddenly there
I rush in
As if the yearning would ever allow me to take my time

So aware of the seconds
I pull you close
The warmth of your cheek
Your instant affection
your inability to stay still
The love of your embrace
For as long as you’ll tolerate the interruption in play

I drink it deep
Knowing it can only be a moment
Readily accepting the cost to come
Be it the flood of tears as light dawns
Or days fogged in stupor

Remaining motionless
I keep my eyes shut
Clinging to the lingering wisp of each sensation
The smell
The sound
The touch
The weight of your body that just left my arms

you were right here.

What occupies my mind today is the many ways Rudy prepared us for the journey we are on with ALS…the situations are different but the landscape is very familiar and there is a calm that comes with the familiarity. I still wish none of it was a part of our story…I wish Rudy was spared his medical frailties and a life cut so short…I wish I would be spared ALS and the family having to walk this with me. And yet, in the midst of my lamentations, I’m very much aware of our family’s “second-nature” response to life right now…there’s a certain level of “expertise” and confidence with which we are navigating ALS that can be traced back to our boy…part of his precious legacy, I guess.

We miss you desperately, dear Rudy! May you continue to feel the love in our longing for you today.

This picture of Wilson at Joshua Tree reminded me of this verse. 😉

Olivia and her coach and some of her teammates were recently honored for their winning season with a banner to be hung in the school gym. Lacrosse is not only a healthy passion for our girl but it has become a really fun distraction for me and Rolf. The 2019 season begins next month and I’m getting excited! Go DP Lady Laxers!!

Another favorite verse on a picture of Rudy’s funeral flowers.

Thank you for your prayers and extra expressions of love today dear friends.

I Hate Sundays

Well, “Hate” is a strong word, I guess. It’s just that Sundays have become my least favorite day of the week…my emotions run highest on Sundays and going to church is both painful and exhausting. Just like at the rescue mission, Rudy was such a big presence at church and I miss him there. It’s been almost a year and a half since losing our boy and it still breaks my heart every time the kids are dismissed for Children’s Church. Memories flood of him gleefully going with a special buddy assigned to assist him, confidently saying “See ya!” as he turned to go or the one Sunday when he walked up to the front of the church just so he could walk back down the aisle and high five everyone on his way out of the sanctuary. Moments that warmed our hearts then and break my heart now.

It’s ironic, though, too because, of course, church is also a place of great comfort which is why I’m motivated to keep going and not curl up in a ball in bed on Sunday mornings. I’m motivated to push through the pain to be with my church friends and to glean moments of corporate prayer and worship and teaching that encourage my heart. Sometimes I wish it wasn’t all so intertwined…I wish there was a healthy way to avoid the pain but then again I can’t help but think that the intertwined nature of our grief is an indication we’re doing something right. The intensity of our grief should mirror the intensity of our love and if we love well, the grief absolutely will touch every space we occupy. The goal continues to be learning to co-exist with the pain and not be afraid to hate Sundays sometimes.

Speaking of “loving well”, Max wrote a song recently inspired by 1 Corinthians 13 and his interpretation really speaks to my heart. It may sound cliche but take it from someone who is nearing the end of her life, nothing we do or become matters AT ALL if love isn’t part of the equation! Period. We can spend our lives achieving and accumulating but without love, it is all meaningless.

I hope I can share a recording of Max’s song sometime, but in the meantime, here are his lyrics:

Good Teacher of wisdom I come to you, To learn what I must do. I so adore the way you love me, I want to love others like you do.

I can sing Your praise in a thousand tongues. I can pray through pain, give all I own. I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

I pray You would soften my heart, and make me slow to anger and quick to forgive. How do I have a heart for those who break it? How do I love my enemies?

I can sing Your praise in a thousand tongues. I can pray through pain, give all I own. I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

You are my God, God of love (3x) You are my God!

I can sing Your praise in a thousand tongues. I can pray through pain, give all I own. I can have faith that moves mountains, but what is it worth, if I don’t have love, if I don’t have love?

(What Is It Worth? -Max Geyling)

I’m glad the kids are all settled back at school and enjoying time with their friends but I sure do miss having them around home during the day. I miss their fun energy and practical help. Wilson is big enough and strong enough now that he can just pick me up and carry me to where I need to be. VERY HELPFUL!! We are our own version of the children’s classic “Love You Forever”… 😉

7b1a8288-2 — Thank you, Greg, for capturing this moment!

Love and more love dear friends!

Flu Update

Thank you, dear friends, for your many prayers specific to the flu…I’ve been recuperating at home for the past week and am feeling so much better. I’m tired and sleepy but I have lots of time to sleep so there’s an easy solution there. 😉 My home health nurse came on Monday to access my port for another round of Radicava infusions and she confirmed my lungs sound nice and clear! Yay! The greatest concern, of course, with any bug is that it would turn into pneumonia with my compromised respiratory system and I’m grateful this flu bug didn’t become a serious complication. I’m potentially contagious for a couple more days so I’ll continue to lay low but with rain on it’s way, I wouldn’t be getting out much anyway. 🙂

I wanted to share the following graphic a friend of ours had made up with the text from my “launching letter” I shared at the SBRM Graduation back in November. I like the graphic artist’s visualization of the text and thought you might enjoy it too…

trish's speech poster succulent 3 — A new version of my “Launching Letter” to the kids…

Thank you again everyone! ‘Praying for stronger days ahead for us all.

Love and more love.

A New Year

The past couple of weeks have been a bit perplexing for me physically…I’ve noticed a obvious loss of function and greater weakness in general. In addition, on Christmas day I began having these choking episodes that seem to be triggered by muscle spasms that have left me feeling frightened and discouraged. I started the new year off with a visit to the neurologist yesterday and even though I kind of dread these appts, I was eager to talk to the doctor about the new developments I’ve been experiencing. Every appt I go to, I rate my function on this universal point system to track the progression of the disease and I typically lose 1-2 points at every 3 month appt…the neurologist questioned the fact that I lost 8 points in yesterday’s assessment. As a result, she wants me to follow up with another swallow study and lung function test but those have to be put on hold for a couple of weeks as I also tested positive for influenza yesterday.

I’m actually kind of relieved I have the flu as this might explain the quick progression of weakness I’ve experienced. Maybe my poor score on the ALS assessment is due to it being an “off” day. I’m praying so and also praying I can nip this flu bug in the bud quickly before it creates greater respiratory issues. I sure am uncomfortable and can’t cough strong enough as is needed. Would you please pray for health in our household as the boys head back to their campuses this weekend and Olivia returns to school on Monday? I’m on Tamiflu now but will be contagious for a week or so.

(I’ve shared similar reflections in the past but it bears repeating as it’s where my heart is today)…Visits to the neurologist (all of the doctors I see, really) are definitely exercises in emotional steadfastness…I go with these stupid, high expectations of being helped, somehow relieved of my symptoms for even just a moment and walk away reminded that all the medical community can really do for me at this point is to monitor my journey and suggest OTC drugs and supplements that may or may not help “depending on the individual”. I don’t blame the medical community (I’m very grateful for the care I am getting)…it’s just the nature of the disease and the unmet expectations (no matter how unrealistic) hurt. I had similar emotional responses to Rudy’s check-ins with his cardiologist and the heart clinic down at UCLA. If only something specific could have been done pro-actively as opposed to just responding to what his body was doing…if only.

It’s important for me to keep days like yesterday in perspective…emotionally charged, physically exhausting, drowning in “to dos”…it’ll feel lighter and brighter when my body doesn’t ache. Rolf and I had to do some power-of-attorney stuff yesterday as well…we called Schwab to make sure Rolf can manage/access my retirement account. I had to talk to the Schwab rep to verify my consent and said “Hi Alex, give me just a minute. I have ALS and can’t talk well. Can you understand me?”. There was a moment of silence and Alex responded “Yes, I can understand you.” and then went on to say ” Thank you for your courage, Mrs. Geyling. I’m honored to help you today”. He proceeded to ask me the necessary security questions and we finished our business. I hung up with tears in my eyes…I engaged in the “task” at hand so matter-of-factly and it was met with this sweet expression of humanity that, frankly, I didn’t expect. I wish I felt courageous, my friends, (today especially) but I’m grateful for the encouragement nonetheless. 😉 God is present in big and small ways.

And so the new year begins…thank you for continued prayers!

Love and more love.

Geyling Family Reunion

Rolf’s family all made their way to Santa Barbara the day after Christmas for a four day family reunion…especially sweet given the fact they all live out East! ‘So grateful to Oma for making our time together happen. 😉

Oma and the grandkids…with Seamus, Faoileann, Rudy and Opa close at heart!

Rolf’s sibs and their families…

Here are some fun highlights…

Our niece Mayali is a talented artist and gifted us this beautiful hummingbird!

Max and Wilson had a gig with Nate and Jeremy at Cap’n Fatties…

…and added a spontaneous cousin collaboration with Jessie to the lineup. So good!

And with that, 2018 is coming to a quick close. I’m grateful for time spent with family and friends this year and praying for much more of the same in 2019!! Happy New Year dear ones…with much love and gratitude to you for continuing on this journey with us. Blessings to you in 2019, The California Geylings

Christmas 2018

We are soaking up the richness of this time together in so many ways…through the sweet spirit of our church’s Christmas Eve service last night followed by time with good friends playing fun games late into the night risking crossing paths with Santa and quietly cozied up at home together today. 🙂 It’s precious and peaceful.

Max wrote a 4-part a’cappella arrangement to this Chris Tomlin song and pulled it together for the Christmas Eve service with the help of his siblings and the Knight sisters!!!

I was also able to carry out the traditional singing of “Silent Night” in German despite doubting whether or not I could pull it off with my limitations! Yay! Luckily, most people don’t know whether or not I’m butchering the enunciation anyway!! Ha Ha…Yay! This is for you, Oma 😉

Welcomed reminders of Rudy everywhere…including our freezer! Ha Ha 🙂

Merry Christmas Rudy-boy!! We love and miss you so deeply!!

We’ll spend the rest of today relaxing and resting up for the invasion of Geyling cousins arriving tomorrow. We’re looking forward to 4 days of extended family fun…as we anticipate Rolf’s family’s arrival, I can’t help but think about how thrilled Rudy would be to be here and in the middle of all the fun to come but I guess that’s true for me everyday. Merry Christmas Rudy…give Jesus a birthday hug for us please!

We Wish You A Merry Christmas

The boys got home late last Friday night and have already enjoyed a week of pre-Christmas fun. Poor Olivia had to endure one last week of school but is officially on her Christmas break as of this afternoon and is ready to party. We are planning on having a quiet Christmas here at home and looking forward to a Geyling Family reunion in the days following Christmas.

The boys at the SBRM Christmas celebration with Nancy, a longtime friend and former(!) homeless guest. 🙂

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We wish you a very Merry Christmas, dear ones. I know I’m not the only one trying to find balance this season…longing to feel the suffocating burden of grief and pain lifted for even just a moment…looking for fresh revelations of God’s love. My prayer is for us all to be engulfed by tangible expressions of God’s love, overwhelmed by His light in whatever darkness we may find ourselves this Christmas and to have lots of reasons to laugh. Bless you friends!

7B1A6015

Creativity Doesn’t Die

I’ve never been much of a dreamer…at night at least. If I do dream while I sleep, I rarely wake up with memory of it. As a result, the vivid dreams I’ve had the past couple of weeks are surprising to me. I’ve dreamt about Rudy and just the other night I dreamt of me singing…standing up and playing the guitar. I seem to be dreaming about the things I’ve lost so although the dreams themselves are pleasant, a heavy heart settles in when I wake up and realize it was only a dream. It leads me to question, why is my subconscious choosing to create nighttime movie reels NOW – after all these years?!!! It’s like my mind is on hyper-drive and doesn’t take a break even when I sleep.

I wonder if my mind is missing my creative outlets as much as my heart. 😉 This time of year is typically filled with a ton of creative expression for me through music and jewelry making. I miss time spent in my little shop making my jewelry designs in preparation for my holiday trunk shows and open house. And although I’m still helping to lead worship at my church, what I’m able to offer vocally is becoming severely limited and my arms are feeling the fatigue of playing guitar so the joy of music making is beginning to wane a bit. That’s a tough realization this time of year too as my heart longs to sing “Mary Did You Know” with my friend Darlene as was tradition for many years or break out my guitar for impromptu carol sings.

The good news is creativity doesn’t die. As the doors to certain creative expressions close, it seems I’m led to alternatives. A friend of mine introduced me to the practice of praying with prayer beads last year when I shared that I was having a hard time focusing long enough to pray. I was intrigued by it and did a little research on the history of Anglican/Protestant prayer beads (a cross between the Orthodox Prayer Rope and the Catholic Rosary) that led me through a fun journey of discovery. I read a number of different suggested prayer guides and tried a few on for size and ultimately came up with an adapted compilation of my own. It has been a sweet creative exercise AND benefit to my prayer life. Win/Win!

Here’s a link to a .pdf of my prayer bead compilation if you’re interested! You don’t need prayer beads to pray it with me!…

Daily Prayer

There is real value in adopting new practices when the old become stale or, in my case, die off. It’s a helpful reminder to me that life is still being lived and my heart is still being inspired to express itself no matter how “stuck” I feel. God is, truly, ever present!

A sweet little collection of meaningful artifacts is growing on the arm of my wheelchair. 🙂

‘So, so grateful Darlene and I recorded our rendition of “Mary Did You Know” several years ago with the help of our friends Jake and Jeremy (I don’t even care anymore that I’m a little pitchy). I’m sharing it again here in honor of our tradition. 🙂

OUCH!

Oh man, this holiday season is going to be tough. In part because, as I mentioned before, my grief over Rudy seems to be more vivid this second year without him…the first year was cluttered with so much grief that it was hard for me to compartmentalize the pain…this year my grief is easier to distinguish…this year grief over Rudy is specific and deeply felt. The other reason this season is going to be a challenge is that it’s our first “real” Christmas without Rudy. You may recall that last year at this time our community was held captive by what turned out to be the largest wild fire in California history at the time…schools closed, many local businesses closed, whole communities evacuated and all the holiday festivities we typically participated in were cancelled. We basically hunkered down at home and stayed put. It was a hard time, for sure, but it was so far from what was familiar that it kind of just added to the clutter.

Thankfully our community is moving forward & rebuilding and with the much needed rain we’ve gotten this week, there is no threat of a fire this year…life around us is moving on and holiday fun has returned. It’s a good thing but Rudy’s absence in the spaces he used to occupy in all our familiar Christmas fun is so totally obvious. It’s gaping wide and filled with an ache that is so, so deep. I missed him last night at the SBRM Staff Christmas Party and I’m already missing how ever single day in December used to be filled with some holiday celebration or preparation whether is was for church or school or the rescue mission and how Rudy was my constant companion in it all. Ugh!

That being said, I’ve also been thinking about some pretty bold heart-to-heart conversations I’ve had with a few friends in the last year about the hope of seeing Rudy in heaven some day. I was reminded of it again yesterday while watching the State Funeral Service for President G.H.W. Bush and the many references made about his finally being with his beloved daughter Robin who died of leukemia when she was 3 years old. To be honest, that’s a tricky concept for me and runs the risk of being over-simplified when referenced as a potential “silver lining”. As much as I miss Rudy now and know, wholeheartedly, that when the time comes for me to be reunited with him, it will be an amazing experience, that reality holds little comfort for me at this stage in the game. I wish I could say it brings me peace on some level but it doesn’t because I really don’t want to die in my 50s and leave the rest of my family. The other reality that plays into this for me is that my relationship with Rudy was defined largely as his caretaker and his cognitive disabilities limited the way we interacted on many levels…it blows my mind to think that so much of what our relationship was based on won’t even exist in heaven. I know I’ll recognize the love we shared but it will be a very different relationship in the eternal realms and it’s hard for my small, temporal mind to grasp the comfort in that right now. Does that make any sense?

What a strange mix of thoughts and feelings. Welcome to my twisted world!

Bottom line? Today hurts. And there is a lot of piercing Christmas cheer ahead that I want to push through and stomach because I don’t feel the freedom to step back. If this were a different kind of grief journey, I would have no problem saying “This is hurting a little too much right now. I’m gonna choose to step back this year, take a break and reengage next year”. Instead, there’s a need to be present in it all this year (no matter how emotionally crippled I may be) because I feel the constant movement of that damn hour glass…no time-outs, no stepping back to take a breath, no reprieve, no chance of remission. Aw man, I better stop before I get any further down this rabbit hole. You get the idea…it’s complicated.

Your continued prayer is so greatly appreciated. I think I’ll let you sort out the above and pray as God leads you to pray rather than share a list. Today kind of feels like one of those Moses moments when our family needs the faithful to do the hard work of holding our arms up for us…not due to a lack of faith, just a lack of energy. 😉

Rudy’s smile always makes me smile so to close this post, here are some memorable moments we shared with our boy our last December together in 2016..

Outing teacher Todd as Santa at his school party!

Charming the local news media sent to the rescue mission to cover the homeless feast.

It’s Officially Christmastime!

It’s officially Christmastime. Yay!! We were blessed with another family gathering over the weekend, this time in San Diego. Rolf and I drove south on Thursday to visit some friends in Los Angeles and catch Wilson leading worship at an APU chapel, we then made our way to San Diego where we enjoyed some down time with Max on Friday. By Saturday, Olivia and Wilson joined us in SD and we all got to attend Max’s choir Christmas concert…a perfect way to usher in December! In the midst of all the family fun, Rolf made arrangements to surprise me with a mini reunion of my good friends and former co-workers at the restaurant we all gathered at 26 years ago for Rolf’s and my wedding rehearsal dinner! What a sweet time of reminiscing, affirmation and prayer with old friends.

Our first stop was a quick visit with Justin and Victoria Nelson…Moriah’s parents. It’s always a sacred time with these two!

Wilson has been a percussionist in the APU Liturgical Chapel Band since he was a sophomore and we’ve not attended any of his chapels in person so going to Thursday’s chapel was an extra-special treat. Wilson has a love for hymns and it shows in his leading of “Great Is Thy Faithfulness”! 🙂

It was a blustery day in SD on Friday and the surf was wild but oh, so mesmerizing to watch!

The leaning Christmas Tree of Ocean Beach!

Wilson, having never seen an eyelash curler before, asked Olivia what she was doing and so she demonstrated on him! His eyelashes never looked better!!!! Ha ha

Why?!? Why do they always end up in a headlock?

Our mini reunion…The kids? A bit taller. The grown ups? A bit grayer. The friendships? So much sweeter!

PLNU’s Annual Cider Celebration was, once again, a blessed time filled with a variety of goofy and worshipful moments. Max’s professor always includes really fascinating arrangements that leave the listener thinking…like this unique arrangement of “Silent Night”…

It’s tradition to close every concert with this benediction. The camera work isn’t anything to look at so turn up the volume, sit back, close your eyes and receive the blessing that it holds for you. 😉

The VERY astute Rudy’s Beat reader will notice I’m in a new wheelchair. My custom wheelchair was delivered last Wednesday just in time for our road trip. It’s just like the loaner I was using in function but has much more comfy chair pads and fits my measurements perfectly. I ended up sleeping in it two nights in the hotel because I can adjust my body position automatically as needed throughout the night…something that’s getting harder to do in bed by myself. I’m very thankful for the comfort and function it gives me and I don’t take for granted the gift it is even though it’s bittersweet. I catch glimpses of my silhouette in storefront windows all hunched over in a wheelchair and think “Who is that?…How did I get here?…I’m not the person people see at face value?” and yet it IS me…it’s part of the ever-changing definition of me. A definition that’s hard to deny the more durable medical equipment I need and the more dependent on others I become…my mind, however, is slow to adjust to the transitions my body is making. And so, I come home from a really fun and full weekend like this past weekend, surprised by how wiped out and completely useless (practically speaking) I am. I have a couple of big events this week but mostly I’ll have time to rest up and hopefully regain a bit of energy. You know, ‘kinda feel the need to listen to that blessing again…

Happy December Everybody…’wishing you fun and festive holiday prep in these few weeks leading up to Christmas!