Public Appearances

The past couple of weeks have been fuller than normal for us in recent months and I’m paying for it now but it’s soooo worth it!  My limitations continue to be an adjustment for us all but we’re figuring it out, finding a sweet rhythm and learning to pace ourselves.  I’m grateful for the support of family and friends that help make the life we attempt to do possible.  Although I’m not as independent with the wheelchair as I hoped I’d be, I do enjoy outings more with it and am so grateful for the fun it allowed me to have this past week especially…

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Wilson came home last weekend and was able to join us for the SB Rescue Mission’s annual fundraising event out at Dos Pueblos Ranch…it was a beautiful afternoon..’so glad these two and Oma were with us.
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Last weekend was also DP’s homecoming…and Olivia’s debut as the Charger mascot!
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And how fun it was to crash Olivia’s homecoming photo shoot with her friends…

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A girl and her dad and Oma.
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Missing Max!

On Wednesday, our local Fellowship of Christian Athlete clubs participated in an annual city-wide outreach and, as a member of the student leadership team, Olivia shared part of her story.  Olivia does not typically share personal things publicly so the significance of her willingness to share was not lost on me and Rolf leading up to Wednesday…how very grateful I am that she chose to put herself out there…for her own heart health as well as those who got to hear her share.  Her story impacted me deeply and taught me something new.  Thank you Livy Jo.

Rolf and I drove down to San Diego on Thursday to watch Max perform on campus at a gathering called Musoffee (music and coffee)…

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Dinner with friends Andrew and Noelle before the show!

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It was so much fun watching him have a blast doing something he loves to do…

 

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An added bonus for me was the chance to connect with this sweet gal…a good high school friend from Indy who just “happened” to be in San Diego for a family celebration! So, so grateful for Annie’s friendship and the chance to give her a BIG SQUEEZE! God is good to me 😉

Grateful!

Oops, I Did It Again!

It’s been a while since I fell and actually hurt myself but I took a tumble on Thursday when my knee buckled on the way to the bathroom and I sprained my ankle.  Thankfully, it’s my bad leg this time so it’s not that debilitating…just painful.  Arrrgh!

As it turns out, my spill is a bit symbolic because it happened minutes after Olivia successfully passed her driver’s test and became an independent, licensed driver!  Woo Hoo!  Way to go Olivia!!!  I have been praying in recent months that I’d be able to physically drive until Olivia got her license…and God answered my prayer!  Praise Him!  However, now that Livy is able to drive herself to all her fun activities and because my reaction time in my weakening right foot is getting slower it’s time for me to voluntarily give up driving.  It’s not like I was driving a ton other than to take Olivia to school each morning anyway but it’s a tough reality to go from “choosing” not to drive to not being able to do so safely.  😦  So, significant milestones continue to be marked in the Geyling household…marked with a tinge of heartbreak but mostly gratitude and relief for answered prayers!

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September 27, 2018! Yay Olivia!!
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My very own “Dial-a-Ride”!!

10 Years

Today is October 1, 2018.  Today would have been Rudy’s 10th Birthday.  Double digits!!!  How proud Rudy would be!

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October 1, 2008 was a Wednesday. I went into labor a month early and because of the high risk nature of my pregnancy, I was transported to UCLA from SB Cottage Hospital by ambulance. There were a lot of tears that day but I didn’t want Rudy to see sad pictures of his birth day so we made sure to capture only smiles in the pictures.
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His was a quick labor…he was eager to get his show on the road!

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He was immediately whisked to the NICU and sedated to keep him calm before his open heart surgery.
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Soon after, he was transported to the CTICU for closer monitoring by his cardiac team.
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The kids’ first meeting…

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That was a scary first introduction for the big sibs and I remember being so proud of them…they were so brave and respectful and compassionate and inquisitive and funny and concerned…they were so themselves!

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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.

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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.

 

Family Time

The California Geylings descended upon Kansas City this past weekend for my niece Emma’s wedding to Josh Mais.  It was an aMAISing wedding adventure and I’m so thankful our family was able to join in on the fun.  How do I sum up a weekend like we had?  It was, as all celebrations seem to be for me these days, so deeply bittersweet…so, SO fun to watch the kids enjoy time with their cousins and soak up all the laughter and shenanigans, so good that we scheduled an extra day to visit with my brother, sister-in-law and mom when the flurry of activity was over and so sweet to connect with their special peeps and my sis-in-law’s family that we’ve gotten to know over the years but the weekend was also bitterly painful and that was hard to face at times.

There was the obvious heartbreak…I can’t go to a bridal shower, wedding celebration or baby shower and not be overcome by waves of grief over the very real threat of missing out on such occasions for my own kids.  I think Rolf and I would be really good at hosting a wedding together and we’d be fun grandparents (if I do say so myself).  That is an ongoing heartbreak, for sure, but I was kind of surprised by how hard it was to be there and not be able to really participate…there was a day when I would have hopped to it and jumped in to lend a helping hand and would have enjoyed being a part of the logistics.  Instead, I was a spectator in every sense of the word and that felt really foreign.

There was also a moment after the ceremony when the extended Wilson family was called up for a group picture.  I stood up with support from my guys on either side and then had to hang tight for a minute while other shots were being taken.  At one point, the photographer looked back and saw me but assumed, I think, that I’d get out of his way as he hurried to get his shot.  I couldn’t move fast enough and he backed into me.  It was totally understandable and really not that big of a deal but the incident was an emotional trigger and my slow, slooooooow maneuvering into place for the family picture only accentuated me feeling like a huge elephant in the room and I started to cry…NOT helpful when about to take a picture!!  Yeah, didn’t see that coming either.

As Rolf, Olivia and I drove the boys to the airport for their return flight on Sunday, Wilson shared with us how he got emotional during the reception when Josh danced with his mom.  I was able to share that I could relate and how desperately I wish I could be present at future Geyling weddings and next generation celebrations but it dawned on me as we talked that there is comfort knowing that we have celebrated well as a family over the years.  There are no regrets there.  Whether simple or elaborate, celebrating life was something we valued as a young family and I know that my kids know what a passionate participant I’d be if I could by the many examples in our family history.  ‘Counting on memory serving us well in the future.

There was, however, a ton of fun that was had as well and here’s a look at some of it!  Rudy wasn’t far from our thoughts and ended up being a big part of an ongoing photo game we played throughout the weekend.  In case you missed it on social media, here’s our #lookingforlightning scavenger hunt…

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Looking for Lightning in LAX
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L4L reunited with the boys in Kansas City
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L4L with the cousins on wedding eve
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L4L dressed to impress
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L4L right before the kiss!!!
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L4L in the Wilson Family Pic…yes, Lightning is in there somewhere!!!
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L4L saying goodbye to the boys 😦
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Final L4L while eating frozen custard

Here are some other highlight moments…

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Slap a Joanie Cunningham perm on our girl and we could be twins! Ha Ha
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Breakfast with my cousin Becky and hubby Bill.
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My big bro Steve and Emma the bride.
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The kids and Grandma Jo
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Emma’s married!!!!

Uncle Rolf and Emma…then and now…oh my gosh, SO CUTE!!!!

 

 

 

 

We’re serious about our cousin traditions…

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Circa 2004
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Rudy was SO proud to be in the front of the line in 2014!  Ha Ha
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2017
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Cousin hubbies were included this year!  Ha Ha Ha, CLASSIC!

Family time.  Good time!

 

Another Major Milestone

My heart is carrying another sad milestone today…the year anniversary of my ALS diagnosis.  I’m so over sad milestones.  I really long for a milestone that marks fun, life-giving progress.  Instead, my mind is flooded, once again, with the anguish of “this time last year”…and there was quite a bit of anguish leading up to September 18, 2017…I had been through a series of tests the month prior that ended with an MRI to see if there was any nerve obstruction causing my mobility issues at the time.  I got a call from the neurologist’s office on Friday September 15th to set up an appointment first thing the following Monday morning.  The doctor wanted to discuss the MRI results and requested that I please bring my husband.  Ugh, my heart sank.  I knew it wasn’t going to be good news but prayed desperately all weekend long that I had a cancerous tumor causing my neurological issues…or some other obstruction that came with treatment options (you know your options are pretty bad when you’re praying for cancer) but I knew enough about my symptoms to know ALS was a very real possibility.  So, for 2 1/2 days, Rolf and I walked around in a heavy, burdened stupor stuck between just wanting to rip the band aid off and absolutely not wanting Monday to come.  Well, Monday did come and this is what it looked like on our way to the 8am appointment…

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September 18, 2017

The foggy haze that morning matched the mood.

 

I’m a big musical theater fan…especially Rogers & Hammerstein musicals (FYI, my all-time, old-school favorite is The Sound of Music but that has nothing to do with what I’m talking about here, I digress).  The song “You’ll Never Walk Alone” from the Rogers & Hammerstein musical Carousel has been occupying my mind this past week…you know, you’ve heard it even if you haven’t seen the musical…a gazillion artists have recorded it.  The lyrics go like this:

When you walk through a storm hold your head up high and don’t be afraid of the dark.

At the end of the storm is a golden sky and the sweet silver song of a lark.

Walk on through the wind, walk on through the rain,

Though your dreams be tossed and blown.

Walk on, walk on with hope in your heart and you’ll never walk alone.

You’ll never walk alone.

It’s fascinating to me how random things pop into your head and if you give the thought a second of your time, it can lead you to some interesting places.  For example, the first line of this song came to mind last week and I sang it over and over until I finally took the time to look up the lyrics.  The end of the third line immediately jumped off the screen …“Though your dreams be tossed and blown”…and I started to cry.  That one line struck a chord in my heart and summed up the epicenter of my heartbreak since my ALS diagnosis.  I’ve touched on this before but I would describe it like this…I lost a handful of specific dreams when I lost Rudy, but ALS wiped out the whole kit and caboodle.  If ever I have felt like my dreams have been tossed and blown, it is now.  I think this can be easily misunderstood or misinterpreted for a sense of purpose and it’s more subjective than that.  I have no doubt my life has purpose (as long as there is breath, there is purpose) and that God is using my present circumstances in a purposeful way but my “purpose” isn’t necessarily mine…my dreams, however, are born of me and losing them is losing a big part of me (another aspect of the disappearing act I mentioned in my last post).  For a year I’ve been trying to figure out what I’m supposed to do with the empty spaces in me that used to be occupied by my dreams?  In her podcast with Alan Alda, Kate Bowler poses a similar question “What is it like to live after you give up on some of your most deeply cherished…” (I’ll insert here) dreams?  She talks of finding a new language to live in this new reality.  I can relate to that because I don’t think the answer to my yearlong question is as simple as “When a dream dies? Come up with a new dream”.  What if the landscape is so completely changed that the old way of doing life is completely obsolete requiring a new language to be formed and different approaches to life to be adopted…what if you can’t fight it or simply insist on doing things as you did before…what if you are forced to go with it and make the necessary changes?  What does that look like?  (kinda like in the last scene of Charlton Heston’s Planet of the Apes when- spoiler alert -he realizes he’s actually in New York City after all…Whhhaaatttt?!)  I know, I’m rambling and sounding a tad bit melodramatic but I guess that’s how I’m feeling today…rambled and melodramatic.  It’s in moments like these where verses like Romans 8:6 have practical relevance…

“The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.”  

Yep, it’s true…and, in addition, as time goes on and more and more of myself is emptied, more of God is revealed and there is life and peace in that place.  There is.  I’m experiencing it…maybe not to the extent I long for today but in one tiny step at a time.  And for that I am grateful.

 

 

 

Fun on the Farm

The MOHD Squad enjoyed time away this past weekend that was significant on many levels.  First of all, it involved the annual Geyling trek to the Farm to watch Stanford football with our good friends Ruben and Marit (a tradition that started out as a special treat for Max and Rolf many years ago and eventually got passed down to Olivia).

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Max and Andrew Luck in 2010

This year’s Bay Area road trip also happened to fall on Olivia’s birthday weekend which added to the fun, for sure.  Rolf and Olivia share a love for Stanford Women’s Soccer and Volleyball and it just so happened both teams played at home back to back on Friday so as an added birthday bonus Rolf, Ruben, our goddaughter Maya and her husband Rob, Olivia and a surprise visit from Olivia’s good friend Tara made it an epic start to a full weekend of festive fun!!

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Stanford women’s Soccer with Maya and Tara…(P.S. Stanford won)
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…Stanford women’s volleyball with Tara and…
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…Kerri Walsh Jennings!  (P.S. Stanford won)
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Maya and Rob hosted a delicious pre-game lunch on Saturday…
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…and Marit made sure it was extra-sweet in honor of Olivia!

 

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Our day was topped off by another Stanford win over USC! Woo hoo!!
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It was a “2 thumbs up” kind of weekend!
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We ended the weekend at home with one last birthday celebration with friends…
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…and a video chat with the big bros!

Speaking of the boys, they weren’t far from our thoughts all weekend and made for a good laugh from afar with their Insta-bday wishes to Olivia like this one from Wilson.  Love those boys!  They crack us up!!

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Weekends away are requiring more and more effort but they sure do nourish the soul.  Time away is fun, it’s distracting, it’s good to switch things up and look at life from different vantage points from time to time.  Physically it was challenging for me which is discouraging but the benefits of being with good friends and doing fun things far outweigh the challenges.  We have another big trip to look forward to this month for my niece’s wedding so I need to rest up!  🙂

I have the privilege of meeting with a friend once a month who is walking me through some spiritual direction and as we talked last week, we landed on the subject of my growing physical limitations and how they’re feeding my feeling of quietly slipping away as I wrote about in this previous post.  This led to a longer discussion about what is happening for me spiritually and Diana summed it up like this…she affirmed my feelings by agreeing that I am in a process of disappearing but added that I’m also in a process of becoming my true self, the me that God sees.  I appreciated this insight and found myself pondering it all weekend.  I shared about it over lunch on Saturday and Maya likened it to the process of reduction in cooking…the process of boiling or simmering ingredients down to the rich, flavorful essentials.  I really like that image too.

It’s hard to truly grasp that what I’m “losing” isn’t essential to who I am but the reality is, it really isn’t.  Who I am at my core, the me that God sees is far more fine-tuned than the me I see.  Does this insight make navigating the 15 foot radius of my world any easier?  No, not physically, but there is the hope that I am in a process of being fine-tuned, learning what is truly essential and, in that process, catching glimpses of a richer, more flavorful me.  😉

Today is 9/11.  A somber day for so many.  Remembering those who were lost and those whose lives were forever changed by the losses.

 

 

 

Here We Go Again!

It honestly feels like Max and I just picked up Olivia from her last day of 10th grade and here we were dropping her off for her first day of 11th grade this morning!  Of course, the boys made sure her send off was done out LOUD with great fanfare as Max captured on his IG story…

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If the boys hadn’t been there to make me laugh so hard, I would have been sobbing as we watched our girl walk away toward another school year…I have fears specific to today that are too somber, too personal to articulate but as burdensome as they may be right now, I have great confidence that Olivia is going to ROCK this school year with her trademark humor, grace and (day to day relevant) faith.  I’m so grateful for her, her big brothers, her band of close friends and the folks in her life committed to praying for her.  I envision her buoyed high above the turbulent waters that swirl beneath her…dry, safe, secure and joyful (with a deep, nourishing joy)!  May it be so, Lord, consistently all year long!!!

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11th grade Olivia

Although Wilson moved back to APU a week and a half ago, he has been back and forth a couple of times in the last week to tie up loose ends and just left “for good”…it is hard to believe he is beginning his senior year!  The reality of that is starting to sink in for him…he’s excited and we’re excited for him.  Like with high school, we don’t want him to put the cart before the horse and check out prematurely…there is a lot to embrace this last year of college and we want him to soak it all in but Wilson has set a post-college course for himself that is thoughtful and deliberate…he has a lot about which to be excited and it’s fun to watch him live it out.

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Our big boy and his recent big boy purchase!

Speaking of new-to-us vehicles, our family has acquired THREE this summer!!!  #1 Wilson pictured above with his very own Toyota Tacoma (a baby version of his dad’s Tacoma)…

#2 Max and his very own scooter!!!  Perfect for commuting on The Point…

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Wise choice Maxo!

(Following in his mother’s footsteps)

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me circa 1989 at Sac State 😉

#3 My Harley…

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Ha! Just kidding! I enjoyed my first RIDE on a Harley on Saturday with my friend Rick! Ha Ha Ha
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Rudy got to sit on it a while back too! 😉

No, actually, #3 is another medical van!  Yep, we are there again.

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I’ll share the van acquisition story with you sometime when I have more emotional energy because it’s a real special story but, for now, we are grateful to have a van that will accommodate my wheelchair and we’re trying to find our footing in the shuffling of mindsets and the juggling of vehicles (my felt physical needs are kind of stuck between what the Mazda offers me and what the medical van offers me so each outing will require an assessment and a choice).  I think I had an unrealistic expectation that the medical van would be an easy adjustment and an effortless move toward greater independence for me…I rode in it for the first time yesterday and was, once again, hit by reality…there’s a learning curve to getting in and out of it with a motorized wheelchair, I can’t latch in by myself and I was caught off guard by a flood of memories that came rushing back as Rolf got me settled knowing exactly what to do and how to do it.  How is it that we’re back here again so soon?!?

I’ve had several friends recently make a point of telling me they are praying for Rolf and I do appreciate specific prayers for him.  I’m grateful God gave me him.  He is doing a good job of balancing self-care, work and home but the demands on his time and mental energy are great.  He has been chipping away at a long list of difficult “to dos” (i.e. updating our will/trust paperwork with a lawyer, bathroom modification remodel, acquiring durable medical equipment, fixing broken water heaters, etc, etc, etc) and it feels, to me, like things just pertaining to me can easily be added to that list on a daily basis.  I asked him if he was feeling overwhelmed and he put it well…he said, “It’s a relief to get things marked off the list but none of it brings any joy” (except for maybe getting the water heater fixed – warm showers bring me joy).  So true!  For me, the accomplishments serve to declutter the mind but not lighten the emotional burden.  It’s still crushing and, at times, suffocating.

So, there’s lots going on around here and I have some work ahead of me adjusting to and becoming proficient in the equipment I’ve acquired this summer.  Updates to come…:)  In the meantime, may remnants of summer fun linger a while longer for us all!  Back-to-School Blessings everyone!!!