Creativity Doesn’t Die

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!…

Daily Prayer

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!

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A sweet little collection of meaningful artifacts is growing on the arm of my wheelchair. 🙂

‘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.  🙂

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Speaking of tradition, we were so touched to see that Rudy was included in the Christmas decorations at the flagship Kyles Kitchen again this year! Thank you Ferros…you bless us!             Hi Rudy!

 

OUCH!

Oh man, this holiday season is going to be tough.  In part because, as I mentioned before, my grief over Rudy seems to be more vivid this second year without him…the first year was cluttered with so much grief that it was hard for me to compartmentalize the pain…this year my grief is easier to distinguish…this year grief over Rudy is specific and deeply felt.  The other reason this season is going to be a challenge is that it’s our first “real” Christmas without Rudy.  You may recall that last year at this time our community was held captive by what turned out to be the largest wild fire in California history at the time…schools closed, many local businesses closed, whole communities evacuated and all the holiday festivities we typically participated in were cancelled.  We basically hunkered down at home and stayed put.  It was a hard time, for sure, but it was so far from what was familiar that it kind of just added to the clutter.

Thankfully our community is moving forward & rebuilding and with the much needed rain we’ve gotten this week, there is no threat of a fire this year…life around us is moving on and holiday fun has returned.  It’s a good thing but Rudy’s absence in the spaces he used to occupy in all our familiar Christmas fun is so totally obvious.  It’s gaping wide and filled with an ache that is so, so deep.  I missed him last night at the SBRM Staff Christmas Party and I’m already missing how ever single day in December used to be filled with some holiday celebration or preparation whether is was for church or school or the rescue mission and how Rudy was my constant companion in it all.  Ugh!

That being said, I’ve also been thinking about some pretty bold heart-to-heart conversations I’ve had with a few friends in the last year about the hope of seeing Rudy in heaven some day.  I was reminded of it again yesterday while watching the State Funeral Service for President G.H.W. Bush and the many references made about his finally being with his beloved daughter Robin who died of leukemia when she was 3 years old.  To be honest, that’s a tricky concept for me and runs the risk of being over-simplified when referenced as a potential “silver lining”.  As much as I miss Rudy now and know, wholeheartedly, that when the time comes for me to be reunited with him, it will be an amazing experience, that reality holds little comfort for me at this stage in the game.  I wish I could say it brings me peace on some level but it doesn’t because I really don’t want to die in my 50s and leave the rest of my family.  The other reality that plays into this for me is that my relationship with Rudy was defined largely as his caretaker and his cognitive disabilities limited the way we interacted on many levels…it blows my mind to think that so much of what our relationship was based on won’t even exist in heaven.  I know I’ll recognize the love we shared but it will be a very different relationship in the eternal realms and it’s hard for my small, temporal mind to grasp the comfort in that right now.  Does that make any sense?

What a strange mix of thoughts and feelings.  Welcome to my twisted world!

Bottom line?  Today hurts.  And there is a lot of piercing Christmas cheer ahead that I want to push through and stomach because I don’t feel the freedom to step back.  If this were a different kind of grief journey, I would have no problem saying “This is hurting a little too much right now.  I’m gonna choose to step back this year, take a break and reengage next year”.  Instead, there’s a need to be present in it all this year (no matter how emotionally crippled I may be) because I feel the constant movement of that damn hour glass…no time-outs, no stepping back to take a breath, no reprieve, no chance of remission.  Aw man, I better stop before I get any further down this rabbit hole.  You get the idea…it’s complicated.

Your continued prayer is so greatly appreciated.  I think I’ll let you sort out the above and pray as God leads you to pray rather than share a list.  Today kind of feels like one of those Moses moments when our family needs the faithful to do the hard work of holding our arms up for us…not due to a lack of faith, just a lack of energy.  😉

Rudy’s smile always makes me smile so to close this post, here are some memorable moments we shared with our boy our last December together in 2016..

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Rudy the Christmas tree.
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Outing teacher Todd as Santa at his school party!
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Charming the local news media sent to the rescue mission to cover the homeless feast.
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Singing Christmas Carols!
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Christmas eve at church.
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Christmas Day at the Rescue Mission.
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Family time

 

 

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.

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Our first stop was a quick visit with Justin and Victoria Nelson…Moriah’s parents. It’s always a sacred time with these two!
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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”! 🙂

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It was a blustery day in SD on Friday and the surf was wild but oh, so mesmerizing to watch!
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The leaning Christmas Tree of Ocean Beach!
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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

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A family selfie on Shelter Island!
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Why?!? Why do they always end up in a headlock?
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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…

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Bed snuggling and Christmas movie watching with Olivia and Co.!!!
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More snuggling while watching the Macy’s Thanksgiving Day parade.
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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…

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Homeless dogs get some love too!

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Enjoying the sounds of the “Geyling Trio”.

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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!

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We also headed out to the movie theater, enjoyed the pretty decorations downtown…
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…got a jump start on our own holiday decorating…and cheered for a friend at his bball game…
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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.

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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!!!

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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.

Holiday Prep

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).  🙂

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Ho, Ho, Ho! I LOVE Holiday prep!!

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!!)

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Rolf and I on our 26th wedding anniversary. November 7, 2018

Dia de los Muertos

Thanks to the 2017 Disney/Pixar film Coco, the Mexican “Day of the Dead” holiday is more widely known and part of popular culture than ever before.  I didn’t know anything about it until I moved to a predominantly hispanic community 28 years ago.  It is observed from October 31-November 2 so when I was first introduced to it, I thought it was Mexico’s version of Halloween and because I wasn’t a big fan of the skull and La Calavera Catrina symbols associated with the holiday, I didn’t really pay a whole lot of attention to it in general.  I didn’t understand it’s deep historical roots or it’s profound meaning at that time which is why I’m super glad I took the time to learn more about it over the years.

As I understand it, the holiday at it’s core is time set aside for family and friends to gather and honor loved ones who have passed away.   Dia de los Muertos (or Dia de Muertos) traditions include building altars to honor the deceased, preparing the loved ones’ favorite foods and visiting their graves with their favorite possessions and gifts.  Long ago, the holiday was observed for a whole month but the modern tradition lasts three days with November 1st being reserved specifically for dead children and infants…known as Dia de los Inocentes or Dia de los Angelitos…and November 2nd for deceased adults…and as Coco so beautifully illustrated, it can be done with such color and creativity and enthusiasm!

I have an even GREATER appreciation for the love expressed through the observance of this holiday as I’ve received word that Rudy is being included in some very special tributes this year…

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Rudy is pictured front and center in Nurse Gina’s altar display!!! What a sweet act of love by his former night nurse.
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Rudy’s former teacher “Miss A” texted me a picture of this poster displayed at his school. The students were encouraged to share a name of a deceased loved one and and then talk about what gift they’d bring to that person. If you zoom in on the picture, you’ll see many of Rudy’s schoolmates listed his name and said they’d bring him cars!!! What a sweet comfort!
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…and the tradition of bringing gifts and favorite possessions to the gravesite makes our collective effort on the year anniversary of Rudy’s death back in July even more meaningful! Yay! Way to go friends!!

As I was looking closely at Nurse Gina’s altar picture, it dawned on me that we have our own version of an altar!!!  We have a space on our living room cabinet where a collection of pics have gathered over the years as our loved ones have passed away…

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Well, given that today is November 1st (Dia de los Inocentes) and we’ve already taken  “gifts at the gravesite”, I guess the only thing left to do is to whip up some pizza, tomato basil soup and ranch dressing.  Love you Rudy!  You are remembered and celebrated by many today and we are grateful for the village of friends that still thinks of and loves you too.  Big hugs!!!

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Eating his favorite at Kyles Kitchen…tomato basil soup…in 2017!!!

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(P.S.  I think it’s interesting to note that Rudy’s original due date was November 1st.  He ended up coming a month early…how strange it would be now if his birthday had been November 1st)