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”… 😉

Love and more love dear friends!

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…

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

Love and more love.

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.

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.  😉

Rolf’s sibs and their families…

Here are some fun highlights…

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

The pace of this last week has been much slower.  The weeks between the end of September and the start of November were particularly full so a little respite before the holidays begin is a good thing.  I started another round of Radicava infusions this week which gives me another reason to lounge in bed and watch Hallmark Christmas movies (yes, I’m one of those people!).  Actually, it’s getting to the point where I don’t need an excuse to be in bed…it’s where I’m most comfortable and where I spend most of my day…out of necessity.  I’m still doing my own self-care (i.e. showering and getting dressed) but it’s slow going and pretty much wipes me out.  A couple of trips to the bathroom and back are about all I can handle by myself during the day.  My lack of energy is no longer just a nuisance but a real hurdle in me doing the basics.

The gradual (BUT NOT GRADUAL ENOUGH!) nature of this disease is a perplexing process.  You’d think knowing what your needs are at any given point would be obvious but it isn’t…it’s kind of like standing near the edge of a fog bank…you see it coming but you don’t really notice you’re in the thick of it until you can’t see a few feet in front of you anymore and all of a sudden there is a frantic need to do something about it.  There are some things you can do to be “pro active” in this process but when it comes to certain specifics, you don’t know until you know and that is a little distressing.  I am definitely on the verge of transitioning to yet another level of support.  Each transition pushes me farther away from what is familiar and into new territory…territory that is unknown, frightening, exhausting, humiliating, territory that requires truckloads of patience & grace as well as a constant adjustment of expectations on every level imaginable.  My body feels like it started out in a pool of water, transitioned to a vat of wet cement and now that cement is beginning to harden.  It’s happening, I can feel it and there is nothing I can do to stop it.  A tough reality to face day in and day out no matter how full or empty the calendar may be.

On the bright side, I am using the extra time I have this week to do some holiday prep.  Bound and determined to hand address all 400 of our Christmas cards this year, I got an early start and am chipping away at the list a little bit at a time (address a few, take a nap, address a few more, take a nap, etc, etc).  🙂

Two of my sweet friends came over yesterday and helped me get a jump start on a couple of projects and some wrapping while we listened to Christmas music…now, THAT kind of help I can embrace enthusiastically.  Ha Ha  Oh friends, who am I kidding, I’d be doing all this Christmas prep already with or without ALS!!!  I’ve said from the very beginning of this journey that I wanted to stay true to myself so, I guess, my hyper organized approach to Christmas is a good example of that.  (Yay for the fun of Holiday Prep!!)