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!!

 

 

An Epic Reunion

Hold on to your hats, folks, this is going to be a LONG post.  If ever there was an event difficult to capture in words, it would be the reunion I enjoyed this past weekend.  I spent a gap year in college touring with Up With People and my amazing cast gathered in Santa Barbara over the long President’s Day weekend for our nearly 33 year reunion!

For the unfortunate ones out there who have never experienced an encounter with Up With People, here’s a little background…

What would become known as UWP began in the mid-sixties through regional “Sing Out” performances linked to the Moral Re-armament movement (MRA).  By 1968, J. Blanton Belk took leadership and separated from the MRA to create a non-profit, cross-cultural educational organization for the purpose of inspiring young people to make a difference in the world and build bridges of communication between people of all nations through music and community service.  By the time I began my year in 1986, UWP had grown in popularity with 5 casts of 120 students each criss-crossing the world every year performing anywhere from venues in rural communities to high profile appearances like the Super Bowl Halftime!

My cast was made up of 120+ students and staff who came from 35 U.S. States, Sweden, Norway, Denmark, Finland, Mexico, Panama, Canada, Thailand, Japan, South Korea, Poland, Ireland, France, Italy, Switzerland, what was West Germany at the time, Holland, Belgium and Bermuda! (Did I leave anyone out?  That’s me on the top row about a third of the way in from the left)

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Some of the highlights for my cast included performing on TV at the World Cycling Championships, touring the Olympic Village in Colorado Springs, performing special corporate shows in Las Vegas, San Diego and Phoenix, participating in the Muscular Dystrophy Telethon in Canada with Shari Lewis (you know, the Lamb Chop lady) and Pat & Debby Boone, performing for the first lady (Nancy Reagan) and touring the White House, working at the Special Olympics in Connecticut, a meet and greet with singer Natalie Cole and the hundreds of school assemblies and classroom visits we had with children all over the world! 😉

I pulled out my UWP photo albums and memorabilia in preparation for the reunion and discovered this forgotten letter I wrote to my supporters when I returned from my tour.  It’s kind of interesting to listen to my 21 year old self try to communicate the impact the experience had on me…

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Fast forward 32 1/2 years…

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Longtime Rudy’s Beat readers will remember my accounts of our 25th Anniversary in 2011 and our 30th in 2016.

This time around we had over 50 (!) cast mates, a couple of spouses and a handful of the next generation descend upon our small town to “Raise A Ruckus” (*show tune reference) for 4 days in chilly, breezy Santa Barbara.

The weekend began with a group headed to Costco to stock up on food and beverages…5 carts and $1500 later…   IMG_2547

Shortly after this picture was taken, I got a text from a friend of mine who works at Costco that read “I just saw a bunch of people who love you so much at Costco!”.  Ha Ha  I am NOT surprised that random small world connection was made.  “Up, up with people.  You meet ’em wherever you go.” (*another show tune reference)

The excitement for me built to a fever pitch on Friday as I anticipated seeing everyone that night AND having the boys home for a couple of days!!!!  YAY!!!

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The MOHD Squad was thrilled to have the boys home to share in this special weekend!!!

I heard from several people prior to the reunion that they were nervous about coming…for some it was rooted in the insecurities that come with not having seen this group in so long, for many it was anxiety about seeing me.  I totally get it and prayed that any fear or concern people were bringing with them would be wiped away completely once we were together and that is CERTAINLY what happened…

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IMG_2630Saturday was another full day of hanging out.  The cast assembled mid-afternoon for a circle time centered on ME and extending love and support to my family.  Much to my surprise “TrishFest 2019” was unveiled in full!!  Ha Ha  Although it was very surreal and most humbling to have a significant amount of time focused on me, I felt the enormous love and embraced it all with much gratitude.

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Some of the “TrishFest” swag!

 

 

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We dusted off the old songbook and serenaded each other with our show’s inspiring final anthem…(the kids brought their instruments and jumped in to accompany us with no run through!  I LOVE that!!!)

Oh, and just in case you think the singing ended there…think again!

(Thank you Charlene, Deanna and ALL for putting yourselves out there…these videos definitely capture the thoughtful and fun spirit of this group)

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A visual reminder of all the love!!

The party continued well into the night with entertainment provided by Wilson, Max, J.D., our family friend Jeremy and a handful of others on shaker eggs and tambourines! 🙂

Coast Community Church nearly doubled in size on Sunday morning with the inclusion of the visiting Uppies!  How precious is was for our family to share our church community with our out of town friends and vice versa…it was a magical morning of worship and friendship!

The fun continued throughout the day on Sunday and we all enjoyed dinner prepared by this capable crew:

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Thanks kids!

Honestly, the greatest joy for me throughout the weekend was sitting back and watching small groups gather all over the house and backyard at any given time literally soaking each other up…there was so much catching up to do and laughter to be shared!  Everyone really took advantage of every second!

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Catching up with the offspring!

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The two drummers in my life!

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IMG_2642I was sharing all about the reunion with a friend and she stopped me mid-sentence and pointed out that I used the word “freedom” several times in my description of the weekend and how poignant it is that I’d feel so free while being so restricted physically.  I love that observation.  It’s so true!  Without the typical distractions of daily living, I have the freedom to truly live in. the. moment. FULLY and boy, I sure did that all weekend.  I also experienced a refreshing freedom to speak bold words of encouragement into the lives of my friends.  Not that I haven’t said encouraging things in the past but it hit me this weekend how many thousands of opportunities I missed out on in my lifetime to speak into the lives of others because I was shy or didn’t want to intrude on a person’s personal life or was too busy to sit and really observe what was going on around me.  There were no such obstacles this weekend and it was a rich, rich time for me emotionally.  In the same way, I felt the freedom to communicate my love but it didn’t feel sad like “this is the last time I’m gonna get to say it so I’ll say it” kind of thing…just a real genuine, “grab your face and look you in the eye” kind of thing.  Of course, this is an easy crowd to encourage and love but there is a precious shift in perspective, nonetheless, when you live your emotional life knowing you have absolutely nothing to lose.

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I LOVE that this moment was captured. 😉

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Cast C ’86-’87 (in part)

So now what?  I kind of feel like 21 year old Trish after the tour ended not knowing where to go from here…my heart is so full, my body is so tired, I’m sad to see all the social media posts of everyone headed home and I so wish I could go to our 35th in Scottsdale, AZ!  Who knows, maybe I will be able to.  😉

I asked Rolf what his take away was from the weekend and he said it was good for he and the kids to see me loved so well and how touched he is by the extravagance of Cast C!  So sweet.

Well Cast C, you heard from the big guy himself!  You are a loving and an extravagant group and we thank you for lavishing all that goodness on us!  As I said in our circle time, the circumstances suck and I would give anything for things to be different but I am tremendously grateful for the time and presence of mind to be able to say “I love you and I’m so grateful for the remarkable history we share”.

P.S. I was so busy “living in the moment” I didn’t take any pictures this weekend so thank you all for the pictures and videos you shared with me…I give you photo and video credit! 😉

Love and MORE love, Trish

 

 

 

An Ugly Truth

I recognize I ended my last post boasting about how gracefully I’m letting go of certain things in the ALS process and today’s post is about the not-so-very graceful subject of jealousy…it’s a contradiction, I know, but both are true…

Jealousy actually isn’t something I struggled with in my life in general…especially in recent years.  I’ve certainly had my share of insecurities but those insecurities rarely manifested in being jealous of others which is why I’m surprised by the jealousy I’m experiencing now.  It isn’t a constant feeling but is just under the surface and rears it’s ugly head from time to time…it surfaces when I’m out and about and see able bodied people busily going about their day without having to think twice about how they’re going to navigate their day…it surfaces when I swipe through my FB feed and see all the fun life being lived…it even surfaced this past week as I watched all the Kay and Zales Valentines commercials on tv wishing I could build my “Silver By Trish” business and fulfill by dreams of being the next “Tiffany and Co”.  Ha Ha Ha  Did you catch that?  I’m jealous of Kay and Zales Jewelers?!?!  That’s silly!

At times, though, it’s also more personal…I’m jealous of my friends who are living out or anticipating life transitions that I long to experience, I’m jealous of those I watch seemingly making all the “wrong” choices in life and yet are also seemingly thriving (OUCH!  Super judgmental, I know!!  Forgive me!) and I’m jealous of Rolf and the unique relationship he’ll have with our children in my absence.  Eew!  I don’t like the way any of that sounds but it’s good to speak honestly because I’m learning that jealousy loses a good bit of it’s power when it’s exposed.  And just in case you fall into any of the categories listed above, DON’T FRET, because I’m also learning that my being jealous has NOTHING to do with the object of my jealousy and EVERYTHING to do with… me.  It’s my burden to work through and grow from!  Being jealous and bitter isn’t where I want to land but I am discovering some beautiful expressions of God’s mercy in the act of confronting and interacting with the dark feelings.

For example, the reason I’m jealous of Rolf also happens to be my deepest comfort in facing death!  How grateful I am that Rolf is a good dad, has a close relationship with our kids, communicates well with them and will be living life with our kids for us BOTH!!!  What a huge gift!!  God has also given me a gift in the area of music…especially as it relates to worship.  It’s no secret that leading worship is something I’ve cherished since I was a young adult and is the last remaining commitment on my weekly calendar.  With an amazing amount of practical support from my bandmates, I’ve been able to continue to lead worship at my church much longer than I thought possible.  My contributions are stripped down though…I’m no longer able to sing lead in most of our songs and I packed away my guitar for the last time this past week…I just don’t have the arm strength to keep up with any kind of tempo anymore.  What I can offer musically has been whittled down to a few harmony lines and a strike or two of the tambourine 🙂 and it’s clear that my season as a music maker and corporate worship leader is nearing it’s end.  I can feel it coming and it breaks my heart.

God’s mercy in all this for me is the kids.  God has allowed life to unfold in such a way that one of my greatest personal heartbreaks is being met with one of my greatest joys…the partnership I’ve had with my kids over the years in leading worship at our church is allowing me to pass the baton of leadership (figuratively and literally) to these precious souls that I know intimately, wholly trust and couldn’t be more inspired by!  Wow!  What. a. gift.  Instead of being jealous, I’m overjoyed!  I don’t put this in writing to put any kind of expectation on my children because their journey will be their own and I trust that…this is about me…in this moment…and how God is lovingly dulling the sharp pain of this transition through my kids.  It makes me chuckle, really, because it’s not like our kids’ involvement in music is something we orchestrated or pushed in our household…Rolf and I didn’t even invest in music lessons for our kids for heaven’s sake!!  I think music was just something Rolf and I valued through our different tastes in music and various expressions of appreciation and we invited the kids to enjoy it with us.  Once introduced, they took control of their own relationship with music and are already far more musically literate and gifted than me.  Combine that with a thirst for God and, wow, there’s power in that.

(The expression of Wilson’s heart means the most to me in this recent video…at 4:20 especially – sing it Wilson!)

(Max has the gift of making worship FUN…)

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(Olivia has a confidence in her expression through singing that inspires me…and how grateful I am that she can sing my soprano parts!)

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I praise God for entrusting these three to me and, in turn, I’m able to entrust something I cherish to them – without hesitation.  May God continue to reveal Himself through their pursuit of Him and in their offering of praise…individually and together!!!  🙂

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Back in November of 2017

 

 

 

 

Method to My Madness

A few weeks ago, Rolf received a text from the eldest, grown daughter of our good friends Ruben and Marit explaining that due to an online ordering mix-up, we would be receiving a shipment of Charmin toilet paper intended for her family.  🙂  Rolf offered to send it back and help them get their money refunded to which Sarah said not to bother and to consider it a gift!   So sweet!!  Rolf told me about his text exchange with Sarah and was surprised by my reaction.   He couldn’t understand why I was so giddy over toilet paper…to which I replied, “Honey, you don’t get it.  Our entire life together I’ve purchased Kirkland brand TP, this is CHARMIN!  There’s a difference.”  Completely unaware and unconvinced, Rolf rolled his eyes and chuckled at my enthusiasm.  Not long after, Marit (Sarah’s mom) texted Rolf about an unrelated subject and Rolf relayed the TP story to her.  Marit responded, “Wow, she (Sarah) really loves the Geylings!!…not just TP, but Charmin!”.  Ha!  Rolf finally decided there must be something to it but has yet to experience it…we haven’t opened the case of Charmin.  I want to use up all our Kirkland TP first because there may not be any going back once that box is opened.  We could very well be entering a new era in the Geyling household.  😉

The funny text threads with our friends and the shipment of Charmin that followed made me laugh out loud as well as got me thinking…it got me thinking about the hundreds of decisions I’ve made in the management of our household over the years that the family was never really aware of or cared too much about…decisions which led to my systems of organizing and procedures for daily living that made perfect sense to me at the time but could very well be questioned now as I slowly fade from the scene and new systems are adopted.  Many of the decisions I made in the management of our family weren’t particularly important or life altering (i.e. the choice to use economy vs. brand name TP) but they were ALL deliberate…there was ALWAYS a well thought out reason for the things I did – a method to my madness, so to speak – and I now have a strong desire to replay the tape of our family’s life together, if I could, and explain it all so my kids can be assured of my brilliance long after I’m gone.  Ha, Ha!

Instead, I put together a little autobiographical photo book for my family for Christmas and in the introduction, I wrote this…”I used to think that when I came to the end of my life, being remembered would be really important to me. I’m realizing I was wrong about that. Even if I were to live a long, full life, I’d be lucky if the memory of me carried on for another generation. What I’m finding to be of greater value over being remembered is being understood by the people I love.”  The value I place on understanding myself and, in turn, being understood is high which explains why I appreciate processing through this blog so much or why I fear Rolf and the kids regularly asking “I wonder why Mom (fill in the blank)?” as they comb through the cupboards of our lives together or switch up the systems to meet their needs.  Although my mind is occupied with this crazy train of thought and it’s where my heart is now, the good news is that I’m pretty sure whatever legacy I do end up leaving behind will be bigger than the silly questions left in my absence.  😉

On a practical level, I’m actually pretty proud of how gracefully I’m letting go of things that are no longer in my control…I think the emotion and unrest for me simply comes down to grieving the part of me that is lost in the letting go.

 

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my story

 

 

18 Months

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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.

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

 

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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!!

 

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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”… 😉

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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…

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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!