Cruel Irony

It has been awhile since I shared an update on my physical status…although I’m still recovering from the heightened activity of February and counting on regaining some energy, I’ve definitely experienced the gradual progression of this disease’s symptoms in general the past couple of months.  The greatest difference is in my arm strength.  I’m dropping things more consistently and my upper arms have found their resting place on my torso as if my upper body were wedged in a barrel.  I need assistance, for example, lifting up my arms to put on deodorant.  I can still write and type but my fingers are definitely beginning to stiffen.  It’s disheartening, for sure.  I’m beginning to recognize a pattern in my process of this disease…just like with the loss of function in my legs where my symptoms first surfaced, I started with feeling annoyed by my lack of arm strength and then concerned over the practical implications and now I’m starting to feel the emotional impact.  Once again, expectations need to be adjusted and transitions made.  Ugh.

My hospice counselor asked me last month if I was experiencing any anger and it got me thinking about my full circle relationship with anger.  Although anger hasn’t surfaced yet for me in my ALS journey, I remember struggling with anger in particular as a young mom when demands were high and Rolf traveled a ton for his job.  It must have been something I was concerned about at the time because I came across a stack of index cards recently that I compiled with every bible verse on anger that I could find.  😉  I remember reciting those verses over and over, doing the hard work of growing and praying that God would lift my anger.  Not that anger is all bad or isn’t an appropriate emotion at times but I was in need of a big perspective change at that time in my life and my prayers were thankfully answered.   Perspective is key, I think, and Rudy taught us a great deal in that department.  For whatever reason, Rolf and I never asked “Why us?” when it came to life with Rudy…instead we honestly approached it with the perspective “Why not us?” and it seems to be the same with my ALS.  Don’t get me wrong, I have a lot of questions for God but “Why me?” isn’t one of them and anger isn’t my go-to emotion right now.  What I do battle, however, is deep, deep disappointment…and it is, at times, crushing.

I’ve mentioned my disappointment before as it relates to the children and grieving future life with them and their families but lately my disappointment has been centered on the life Rolf and I are so close to sharing.  I turned 53 last week and with Olivia nearing the end of her junior year, Rolf and I are nearing a new season.  The cruel irony is that my life is ending just as we “successfully” launch our youngest.  Ironic because back when the demands of raising a young family were high and finances were low, I dreamt about life with less stress and a little disposable income…I knew all our hard work was going to pay off one day in a season with room to breathe and time to rediscover each other.  Oh, I know, the empty nest years can have their own difficult adjustments and stresses but Rolf and I seem poised to start that transition strong and I’m devastated we aren’t going to be able to test it…and, more importantly, share it.

It’s a vulnerable time…my growing physical limitations are making me feel more and more vulnerable and there is a lot going on in general leaving us all feeling a little raw and fragile.  Will you please pray for strength of heart and mind?  My hyper awareness of mortality and loss and suffering today seems appropriate for the start of Lent, I guess.

My brother sent me this Lenten prayer yesterday and it certainly is a thoughtful meditation as we prepare our hearts to commemorate the death and resurrection of Christ and it seems particularly applicable to me today.

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Olivia’s latest artwork…a precious gift for my bday…quoting one of our favorite Abba songs in Mama Mia 2.

Bless you friends!  Thank you for your love and prayers!!

 

 

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…

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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

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12 midnight.  Happy 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

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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.  😉

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

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The in-laws!

Rolf’s sibs and their families…

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Here are some fun highlights…

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Our niece Mayali is a talented artist and gifted us this beautiful hummingbird!
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Pool antics
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Beach fun
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The girls dominate “4 on a couch”!
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Epic Ultimate Frisbee Showdown
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4 cousins in a hammock
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Family dinner at Kyle’s Kitchen!
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Max and Wilson had a gig with Nate and Jeremy at Cap’n Fatties…
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…and added a spontaneous cousin collaboration with Jessie to the lineup.  So good!

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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

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Christmas 2018

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Christmas Eve 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 😉

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Christmas Morning 2018

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

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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!

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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!

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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.  🙂

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Speaking of tradition, we were so touched to see that Rudy was included in the Christmas decorations at the flagship Kyles Kitchen again this year! Thank you Ferros…you bless us!             Hi Rudy!