It’s Officially Christmastime!

It’s officially Christmastime.  Yay!!  We were blessed with another family gathering over the weekend, this time in San Diego.  Rolf and I drove south on Thursday to visit some friends in Los Angeles and catch Wilson leading worship at an APU chapel, we then made our way to San Diego where we enjoyed some down time with Max on Friday.  By Saturday, Olivia and Wilson joined us in SD and we all got to attend Max’s choir Christmas concert…a perfect way to usher in December!  In the midst of all the family fun, Rolf made arrangements to surprise me with a mini reunion of my good friends and former co-workers at the restaurant we all gathered at 26 years ago for Rolf’s and my wedding rehearsal dinner!  What a sweet time of reminiscing, affirmation and prayer with old friends.

IMG_1877
Our first stop was a quick visit with Justin and Victoria Nelson…Moriah’s parents. It’s always a sacred time with these two!
IMG_1935
Rudy and Moriah in 2013.

Wilson has been a percussionist in the APU Liturgical Chapel Band since he was a sophomore and we’ve not attended any of his chapels in person so going to Thursday’s chapel was an extra-special treat.  Wilson has a love for hymns and it shows in his leading of “Great Is Thy Faithfulness”! 🙂

IMG_1939
It was a blustery day in SD on Friday and the surf was wild but oh, so mesmerizing to watch!
IMG_1887
The leaning Christmas Tree of Ocean Beach!
IMG_1930
EL INDIO dinner with the Vans!!!!

Wilson, having never seen an eyelash curler before, asked Olivia what she was doing and so she demonstrated on him!  His eyelashes never looked better!!!!  Ha ha

IMG_1908
A family selfie on Shelter Island!
IMG_1911
Why?!? Why do they always end up in a headlock?
IMG_1915
Our mini reunion…The kids? A bit taller. The grown ups? A bit grayer. The friendships? So much sweeter!

PLNU’s Annual Cider Celebration was, once again, a blessed time filled with a variety of goofy and worshipful moments.  Max’s professor always includes really fascinating arrangements that leave the listener thinking…like this unique arrangement of “Silent Night”…

It’s tradition to close every concert with this benediction.  The camera work isn’t anything to look at so turn up the volume, sit back, close your eyes and receive the blessing that it holds for you.  😉

The VERY astute Rudy’s Beat reader will notice I’m in a new wheelchair.  My custom wheelchair was delivered last Wednesday just in time for our road trip.  It’s just like the loaner I was using in function but has much more comfy chair pads and fits my measurements perfectly.  I ended up sleeping in it two nights in the hotel because I can adjust my body position automatically as needed throughout the night…something that’s getting harder to do in bed by myself.  I’m very thankful for the comfort and function it gives me and I don’t take for granted the gift it is even though it’s bittersweet.  I catch glimpses of my silhouette in storefront windows all hunched over in a wheelchair and think “Who is that?…How did I get here?…I’m not the person people see at face value?” and yet it IS me…it’s part of the ever-changing definition of me.  A definition that’s hard to deny the more durable medical equipment I need and the more dependent on others I become…my mind, however, is slow to adjust to the transitions my body is making.  And so, I come home from a really fun and full weekend like this past weekend, surprised by how wiped out and completely useless (practically speaking) I am.  I have a couple of big events this week but mostly I’ll have time to rest up and hopefully regain a bit of energy.  You know, ‘kinda feel the need to listen to that blessing again…

Happy December Everybody…’wishing you fun and festive holiday prep in these few weeks leading up to Christmas!

 

Thankful

And just. like. that. our fun Thanksgiving weekend is over.  The boys left yesterday after church and arrived back to their campuses safely.  Olivia is pretty unmotivated to head back to school this morning after her week long break and I feel her pain…I don’t want her to go back either.  Ha Ha  But, then again, getting back to our normal routine isn’t a bad thing and we get to see the boys again this weekend so we shouldn’t complain!

Our long holiday weekend consisted of a lot of this…

IMG_1784
Bed snuggling and Christmas movie watching with Olivia and Co.!!!
56460013399__4335D6E4-F03B-4DD4-85C8-7B1EC1FABEA9
More snuggling while watching the Macy’s Thanksgiving Day parade.
IMG_1834
And some MORE chilling in bed!!!

Although it was pretty tempting to stay in bed, we did manage to make it out of the house to celebrate Thanksgiving with good friends and the dear folks at the rescue mission…

600_7157

600_7193 (3)

IMG_1803
Homeless dogs get some love too!

600_7262 (1)

600_7468 (3)
Enjoying the sounds of the “Geyling Trio”.

IMG_1810

Once again, there was magic in the air at the SBRM annual Thanksgiving feast…magic in the form of unconditional love, a strong sense of community and light-hearted fun.  The kids helped set the mood with their music in the courtyard with a varied playlist of classic rock ‘n roll, contemporary country, worship songs and what turned into impromptu sing-a-longs…at one point, the homeless guests waiting in line for lunch started singing along to the kids’ rendition of “Stand By Me” and it was a fun moment for the guests and residents and staff hanging out together.  Here’s a little sample of their sound…

I was sitting with one of the residents in the recovery program and we were handing out new socks to the homeless guests as they left the dining room after lunch.  One of the guests came up with one hand carrying a to-go box of food and his other hand was holding up his pants…he fumbled a bit trying to grab the socks we were offering him while not letting go of his pants or dropping his container of food.  The resident next to me said “Hey man, you need a belt?” to which the guest responded “Yeah man”.  Without a second thought, the resident stood up and took off his belt and handed it to the guest.  At first, the guest resisted saying “Oh, nah man!” but the resident insisted, “Take it man, it’s okay”.  The guest put his things down, quickly put the belt on and picked up his food and socks and some toiletries that were also being given away with a big smile of gratitude on his face.  My description doesn’t do it justice…but it was so powerful.  I just sat there quietly, watching this precious interaction unfold and selfishly soaking up the magic that filled the day.  So good!

IMG_1848
We also headed out to the movie theater, enjoyed the pretty decorations downtown…
IMG_1858
…got a jump start on our own holiday decorating…and cheered for a friend at his bball game…
IMG_1859
Our last outing was a picnic lunch with Rudy yesterday (the 25th) before the boys headed back to school.

I guess it can go without saying that is was also a weekend filled with much emotion.  My emotions are constantly just under the surface and it doesn’t take much to make me sob…I know it’s not a comfortable space for most to share with me but the reality is it’s hard to control once the tears start and it’s where I’m at…it’s honest.  Have you noticed how honesty can hurt so, so deeply and often requires effort to be worked through but is always infused with movement, life, transformation and the power to draw us closer?  There’s a gift to be excavated in those moments for sure.

So, the Christmas season is officially here and we look forward to an even longer break with the boys in just about 3 weeks!  Woo Hoo…the countdown is ON!  Happy Belated Thanksgiving dear friends…Thankful for you.

IMG_1775
Poor Harley, this is what she looks like when everybody leaves.

 

“We’re Family”

I was given the honor of sharing a charge with the graduates at the latest SBRM graduation a couple of weeks ago.  Sharing at the November graduation specifically had personal significance for me because Rolf, the big kids and I attended our first graduation in November of 2006 when Rolf interviewed for his current position as President.  That graduation was my first exposure to the work and people of the SBRM and as I sat with tears streaming down my face overwhelmed by the transparency and love that filled the church that evening, I knew our family needed to be a part of it.  Luckily, the search committee and board of directors felt the same way and Rolf began his SBRM employment two months later!!  He commuted between LA and Santa Barbara for 6 long months until our house in Los Angeles sold and we relocated the whole family the following July!  Our family’s relationship with the rescue mission was natural and casual from the very start…the kids related easily to the residents through football scrimmages in the parking lot and impromptu music sessions in the chapel and to the homeless guests at mealtimes and hanging out in the courtyard.  I may have shared this story before but I remember when the big kids were young, they were interviewed on a local radio show and the host asked the kids if they liked volunteering at the rescue mission.  There was an awkward radio silence until one of them said “no, we don’t volunteer there.”!!  Not hearing the response she expected, the host quickly changed the subject.  Afterward, I asked the kids what they were thinking…”why didn’t you answer her question?  You guys are there all the time!” .  The kids looked at me a little confused and said “but we aren’t volunteers, we’re family.”  Ah, yes, indeed.  That was a special season in the life of our young family.  I miss our weekly family dinners in the dining hall with the residents and guests as well as our drop in visits to see the women at the Bethel House.

The Rescue Mission is in the middle of a $10 million remodel…a capital campaign that Rolf and his team have been working hard on for the past few years.  Phase 1 of the remodel was recently completed and the administrative staff got to move into their new offices.  Olivia and I went over to help Rolf hang his pictures and unpack boxes.  It is a beautiful facility and will serve our community well for many decades to come.  I’m so proud of all the hard work, blood, sweat and tears that have gone into this project so far.  There is much work left to be done but there is light at the end of the tunnel and morale is high.  I admit I got overwhelmed touring the new building and seeing all the amazing potential for future ministry and programs.  I guess I didn’t realize how emotionally invested I was in this remodel project and how deeply I wish I could be a part of the great work that is going to fill the freshly painted halls of this very special space in the future.

Sharing words of encouragement to the graduates also allowed me the opportunity to share my genuine love for the Santa Barbara Rescue Mission…the work done through it, the people that fill it and the God who empowers it to “rebuild broken lives”.  ‘Just to be clear, it isn’t a perfect place but it’s genuine in it’s intent for good and in it’s dependency on God and that is a powerful combination!!!

IMG_1740

The video of my charge was shared on the SBRM website so I’ve attached it below for the record. 😉  You’re welcome to listen to it if you have 12 minutes to spare.

Helicopter Parents

IMG_1669

Rolf and I enjoyed a gorgeous Saturday up in San Luis Obispo this weekend to watch Wilson compete in this year’s Ranger Challenge.  He has been a member of his ROTC battalion’s Ranger team every year since he was a freshman and it was a real treat to finally see him and his teammates in action.  We did, however, stick out like sore thumbs since these are not typically spectator events buuuut…..we didn’t care!  Ha Ha

IMG_1705
LTC Doyle caught a picture of Wilson being a beast while Rolf and I were in the background looking like dorks with our cameras fixated on our boy! 🙂  #helicopterparents
IMG_1675
Team work!
IMG_1690
Ok, I admit, in our excitement, Rolf and I might have gone a little overboard in our photo documentation…the quote of the day was by Wilson right after this picture was taken…”So, we’ll see you at the next station then?” Which is code for “You can move along now.” 🙂

IMG_1685

IMG_1688

Each competition course is different but all consist of several timed stations that require the team to complete a task.  Yesterday’s stations were spaced along a 12 mile course that the participants marched with their 40lb rucksacks!  After 6 1/2 hours of continuous competition and ruck marching, the cadets had to complete an obstacle course that included the following…

IMG_1693
Over and under EACH rung!!
IMG_1697
To the top and back!

It was an impressive effort by all the cadets and Rolf and I were in awe of their determination and grit.  When all was said and done the Cal Poly SLO team had home base advantage and won the competition but Wilson’s team came in 2nd place! Woo Hoo

IMG_1704
So proud of you Wilson!
IMG_1702
And, while we’re at it, here’s an important PSA for ya!

The base we were on had a display of antique helicopters, army airplanes and trucks.  Rolf and I couldn’t help but think of Rudy the entire time we were there…he would have LOVED this outing…no crowds, lots of cool vehicles to explore & room to roam and, best of all, seeing Wilson!!

IMG_6139
April 2017

He is never far from our thoughts in all that we do, that’s for sure.

 

 

 

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…

IMG_1513
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.
IMG_1503
Last weekend was also DP’s homecoming…and Olivia’s debut as the Charger mascot!
7b1a7540
And how fun it was to crash Olivia’s homecoming photo shoot with her friends…

7b1a7591

7b1a7660
A girl and her dad and Oma.
7b1a7614
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)…

IMG_1565

IMG_1575
Dinner with friends Andrew and Noelle before the show!

43952815_10156286144294213_2311495525477646336_n

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

 

IMG_1590
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!

This Time Last Year

It’s May 25th today.  It not only marks 10 months since Rudy died, it’s also the start of the long Memorial Day Weekend which means the house has emptied out.  Oma flew back home on Wednesday after her weeklong visit, Wilson left yesterday for Air Assault School in Hawaii, Max left on the train later in the day for Point Loma and Olivia left this morning with her youth group to meet up with Max at Point Loma for an annual youth conference.  Everybody is off doing great, much-anticipated things and that’s super fun.

IMG_1739
Fun with Oma!

IMG_1731

IMG_1761
Sending Wilson off!

IMG_1760

I’m not sure if it’s because we’re getting closer to the 1 year anniversary of Rudy’s passing or not but I’m starting to get preoccupied with “this time last year” memories.  Up until now, my missing of Rudy (especially on holidays) has been fairly general with quick flashes of specific moments…missing his presence mostly and being flooded with a wide range of memories from all his birthdays or many Christmases or the various Easter scavenger hunts he participated in.  In the past couple of weeks, though, I’ve kinda been haunted by memories of last year specifically.  I suppose part of that is due to the fact that how I’ve spent my time this spring is dramatically different without Rudy here…I’ve missed all the end-of-the-school-year activities with Rudy like the Special Olympics Spring Track Meet, the school open house where he showed us all his fun projects, the bowling trip to Zodo’s with his special ed classmates, our annual teacher appreciation dinner, all the field trips and parties, etc.  Oh, I’ve missed it all and the people with whom I did it all.

The memories of this weekend last year are particularly vivid…it was so full…Rolf was working on a bathroom remodel so Rudy and I busied ourselves with a trip to the grand opening of the downtown Kyle’s Kitchen and then went to a friend’s baby dedication and, of course, we spent Sunday watching the Indianapolis 500 which was Rudy’s very favorite.  I can remember random details about the weekend, what he was wearing and the toys he insisted carrying around with him.  My mind is definitely shifting toward a more specific focus as it relates to memories of Rudy and I suspect that focus will become even sharper as we approach July 25th.  Ooooo, tough days ahead.

This Memorial Day Weekend is also a bit of a de ja vu when it comes to house projects.  You may remember that Rolf demolished and rebuilt half of our primary bathroom over the long weekend last year.

IMG_6510
Rolf and Rudy working hard in 2017

IMG_6511

He got as far as the sink, custom countertop and vanity but had to stop there as we were getting ready to host family and friends for Max’s graduation and needed a working bathroom.  The plan was to finish the whole bathroom remodel when the house emptied out again during the summer…well, the project has gone untouched since.  Rolf kind of lost his remodel mojo and I haven’t had the mental energy to tolerate the upheaval either.  However, it’s time to get it done and Rolf is going to resume demolition tomorrow.  Interesting to note, the major project delay is turning out to be fortunate timing for us as we will be doing modifications necessary for me down the line that we wouldn’t have done originally and the benefit of that isn’t lost on me and Rolf.  I’ve always been grateful for Rolf and his excellent thought, planning and execution of projects on behalf of our family over the years and that is especially true of this bathroom project.  The alternative modifications aren’t fun details to think through but he’s doing all the thinking for us and making it happen.  Thanks Rolfi.

Speaking of “this time last year”, this is what Rudy was doing on May 25, 2017…a duet with his sister.

Good job Rudy.

 

Another Reality Check

I had my swallow test at the hospital yesterday.  It was one of those “to dos” that I wasn’t motivated to do.  I find the ongoing tests and evaluations in this journey distressing because I go into them knowing they’ll highlight the progression of the disease without offering a cure or real solution…and that’s just plain depressing.  As wonderful as my team of medical professionals is, the nature of the consults are bubble bursters in my ongoing effort to remain optimistic and see the glass as half full.  🙂

The information gathered from swallow tests specifically helps to determine when a feeding tube will be necessary.  Ugh!  When I was first diagnosed in September, I knew enough about ALS to know feeding tubes and breathing tubes are part of the ALS journey but, to be honest, my gut feeling about how I wanted to approach this disease at that time was to do it naturally…to let it take it’s course naturally…and not intervene.  Well, now I’m confused because when I envisioned having to decide whether or not I’d get a feeding tube, I pictured being bed ridden and having poor quality of life…why prolong that scenario?  That certainly isn’t the case now and the factors in deciding to get a feeding tube aren’t so black and white.  The decision to get a feeding tube is not just based on whether or not the mechanics work but also on the amount of effort it takes to eat.  Although I can still chew and swallow, it is taking me longer and longer to eat.  I really have to focus on chewing and swallowing and eventually the effort to do so will be too much.  I honestly didn’t think I’d be engaged in discussions about feeding tubes this early on in the process.  Some suggest getting the feeding tube sooner rather than later to get used to it before you’re dependent on it.  I’m not there yet.  I’m still not sure how I feel about it.  My speech pathologist said I’ll know when I’m ready and I’m counting on that.  Ongoing prayers for ALS to be completely lifted from me are greatly appreciated but, in the meantime, prayers for a supernatural ability to continue eating naturally and discernment in the process of the disease as a whole are coveted too.

As much as I hated to get the swallow test done yesterday, there were a couple of silver linings…

  1. My friend Bob was my xray tech during the test…

IMG_1683

 

2. And look how Rudy showed up!!!  My hummingbird earring was captured in the xray video…perfectly perched front and center keeping an eye on things.  🙂  I love that.  Hi Rudy!

My next reality check will be a lung function test with the pulmonologist next week but after that, we’ll get a break from any BIG discussions until my next appointment with the neurologist next month.  In the meantime, we’ll have some fun with Oma who arrives today for a weeklong visit.  Thank you for the Mother’s Day love and encouraging notes/comments/messages and thank you for persevering in prayer with us!!!!  How very grateful I am!!!