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.
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!
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
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 😉
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!
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.
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!
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!…
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!
‘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. 🙂
Today is October 1, 2018. Today would have been Rudy’s 10th Birthday. Double digits!!! How proud Rudy would be!
My head hurts. Today is harder than last year…I think I was in shock last year, distracted by so many other things going on and numb on some levels. Today I’m feeling grief that is deep and specific to Rudy alone. His presence is profoundly missed as Rolf captured in his reflection for today…
On Rudy’s 10th Birthday:
The collection of broken remotes hasn’t grown since you left, Yet I’m acutely aware of how many potential additions now lie readily within your grasp— Down low on the couch,
Right there on the end table.
My full coffee cup sits in the danger zone, Precariously next to me on the couch cushion, My free hand always at the ready should you pounce. But there’s little chance of that.
You would be too tempted by how easily the DVD cabinets could be opened and emptied, We only recently realized there’s no need to keep the doors tied shut.
Or the lure of the open front door might prove irresistible Provided you still remember that too much giddiness leads to detection. If you could suppress the urge to squeal or call out “See ya!” Who knows what adventure might await?
How I long for a few moments of panic, Outing my parenting gaffe to the neighbors as I call out in search of you. I’d happily make sense of all the books dumped out in front of the bookcase, Trying to figure out where to tape in all the torn-out pages. Lots of time for that since there’s no Hot Wheels clogging the tub drain.
I miss your happy chaos.
Rolf, Olivia, Oma and I will celebrate our boy later today with a trip to Kyle’s Kitchen and a special dessert (hopefully Oma’s chocolate roll cake!!!). I wish the big boys could join us but we’re all close in thought, for sure.
Looking at all the pictures on this day ten years ago, I’m reminded of how uncertain everything was…there was real concern that Rudy wouldn’t survive his birth or his first surgery or his harrowing recovery…there were so, so many wrenching twists and turns in the very beginning. Honestly, it’s hard to look back in retrospect, to see it all in it’s entirety and comprehend how it was even survivable for any of us. We may not be celebrating 10 years with our boy today but we do stop and celebrate the 8 1/2 years that were his life…a life that was rich and impactful and truly happy despite all of the challenges. Happy Day of your Birth Rudy! ‘Forever grateful for you…forever in love with you…forever changed by you.