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…

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…

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!!!

(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)

Olivia temporarily set aside her XC running shoes this past weekend and pulled out the lacrosse equipment for an off season tournament here in SB.  We enjoyed extended time out on Santa Barbara’s beautiful polo fields and the event was made even sweeter by a spontaneous visit from big bro Wilson and family friend Johanna.

We’ve had a lot going on this month…big milestones, big events, fun day trips, lots of visitors and special outings.  It’s been a wonderful month with family and friends as well as a difficult month with many tears and an increasing battle with depression.  Part of me wants to fill every minute of every day to completely distract myself from the heaviness of it all but I’m also finding that if I don’t carve out the space and take the time to gather my thoughts, I get anxious which only adds to the feelings of depression.  Balance on many levels remains key to coping with and managing this journey.

I so appreciate the opportunity that today’s technology offers me to process life in a blog that can be shared so effortlessly with family and friends.  What started out over a decade ago as an effort to keep folks informed about detailed medical information regarding Rudy ended up turning into a precious family journal over the years and morphed again this last year into a personal record of life and loss.  I may not be in a season where I feel the freedom to invite people to much as it has such an emphasis on the future, but I do feel the freedom to invite people in and that is profoundly important to me right now as it allows for a connection with others and is often a catalyst for meaningful conversations at a time when I feel increasingly isolated.  I guess you could say the blog is an “evite” for others to share in a life experience that is painful and threatening but also rich and rewarding.  😉  Your willingness to continually “accept” my invitation blesses me deeply and I thank you!

On the medical front, the increased weakness in my right foot warranted me getting a brace to match the one I’ve been wearing on my left leg.  I questioned why it was even necessary to get the additional brace if my mobility becomes increasingly limited and I can’t walk anyway, but both the Dr. and Nobbe confirmed the braces will be necessary for transferring from one surface to another in the future so now I look like Rudy.  🙂  What a strange, surreal, somewhat familiar path this is…

I can’t believe October is winding down…next week is Halloween and another SBRM graduation!!  Wow!  Time is flying staggeringly fast and I’m finding that a little unsettling but Autumn is a favorite season of mine so I guess I should embrace it.  Fall Blessings to you and yours.

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!

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…

Here are some other highlight moments…

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

We’re serious about our cousin traditions…

Family time.  Good time!

We took Wilson back to APU on Monday.  He is actually coming home again this weekend so it didn’t feel like the “official” send off but it is the first indicator that summer is winding down fast.  Olivia starts her junior year at DPHS next Wednesday and Max returns to PLNU three days later.  We took advantage of us ALL being together on Saturday and made a quick stop at Rudy’s former school to sit on the “Rudy Buddy Bench” a bit and leave behind a Lightening McQueen car in his memory (he would be going into 4th grade and turning 10 this fall).

We also took a few minutes to think about this coming year and come up with a word or short phrase to focus and inspire us…and since I’m all about visual reminders I made everybody stamp their word/phrase on a washer to hang on a key chain or turn into a bracelet/necklace.  Ha Ha!  The family picked some good ones… “grow”, “faith”, “hold on tight” and “all my hope”.  My choice?  A mantra I’ve been repeating over and over to myself for a few months now…”My faith is greater than my fear”  (but I shortened it to “My faith > My fear”).

I don’t know how often a typical person thinks about death but I’ve actually thought about death A LOT in my lifetime…certainly in the last decade as we were confronted with the very real threat of death in our household but I thought about death a good deal as a child too.  My Grammie Fink made me these embroidered wall hangings when I was little and I remember praying the prayers every night at bedtime and every morning when I woke up.  I was very much aware of death as a child but I was also very much aware of heaven and had a sincere hope of heaven which seemed to quelch any fear I might have had of death as a child.

Not fearing death is an amazing gift…especially when you’re actually facing death but it doesn’t mean this process I’m in isn’t without fear.  I may not fear death but I do fear the process of dying…especially by way of ALS.  This is a torturous disease and I haven’t even hit the really tough stuff yet but as I start to feel limitations due to lack of strength in my arms/hands  (i.e. not being able to lift a plate of food into our microwave or undo a button), I realize I’m staring down some pretty scary realities and its terrifying.  In addition to the physical stuff, I’m also noticing greater frustration and irritability and that scares me too.  I don’t want to lose myself in this process.  I want to feel the wide range feelings but not wound my family in the process.  I don’t want to add to the suffering by being grumpy and unhappy.

When I think about hardship in life, it’s easy for me to get fixated on life since Rudy arrived but a friend I’ve had for 30 years wrote me last week and reminded me of some significant “seasons of suffering” as a young adult, young wife and young mom predating Rudy for sure.  In her reflection, she went on to write “you perfected the art of ministering out of your pain, your struggles, your heartaches. Trish you may not know how rare that is”.  Besides being a very generous thing to say, my friend hit on something helpful.  Somewhere along the way I learned that, though it can be excruciating, there is rich, intrinsic value in embracing suffering and fear and doing the hard work of processing through it (as opposed to stuffing it or numbing it or running away from it).  In retrospect, it not only helped me put life into perspective and highlighted my need for God but it also served to shape who I am at my core…btw, if others were ministered to in the midst of it, well, that was God’s work for sure ;).

I guess what I’m trying to say is as fearful as I am in facing the growing impact of ALS on me and my family, it is how my life is unfolding and I want to live it…I want to glean all that is good internally and eternally and not allow the fear in the experience to control my life.  I think it is important to add that I absolutely believe in “eternal glory” as described in 2 Corinthians 4:16-18 and my childhood hope in heaven is still secure today but it is hard for me to truly immerse my mind in it because I’m not there yet…I’m still slogging it out in the muddy trenches of pain and heartbreak…I can take great delight in the glimpses of heaven I see in nature and in the love that surrounds me but they are still just glimpses.  This is where faith comes in and though it may be reduced to some schlocky Christian slogan, “My Faith > My Fear” is a lifeline mantra for me as I make the daily choice to not be overcome by my fear…especially since Christ already did the hard work of overcoming for me.  😉

If you have the time and interest, I highly recommend this podcast .  It’s a meaty conversation with Kate Bowler (Duke professor, author, historian) who is processing suffering on a level that I can really relate to and inspires me.  Here’s a link to her NYTimes article from 2016 as well.

Ahhh, we made it home safely from our epic adventure in the city that never sleeps and are taking a few days to slowly find our footing again (well, me anyway).  🙂

Actually, the fun began for us the weekend BEFORE our flight to New York on June 18th.  Rolf and I drove up to Palo Alto on Friday the 15th to celebrate our niece who graduated from Stanford that weekend.  It was refreshing to spend the evening with good friends and a beautiful afternoon on campus with Rolf’s sister, brother-in-law and niece.  We returned home late Saturday in time to celebrate Father’s Day with the boys and later with Olivia when she returned home from a lacrosse tournament in San Diego!

Then, we got up early Monday morning for our flight out of LAX to NEW YORK CITY!

This trip was made extra-special by the number of details arranged by friends that added to the fun the Dream Foundation planned…and, of course, there were a number of divine blessings too.  Bottom line?  An army of earthly and heavenly angels had our family’s back and the trip couldn’t have gone smoother!  🙂  Here’s more detail than anyone would ever want (Ha, Ha, Ha)…

Aaaaaand that concludes DAY ONE!!!  Ha Ha Ha

Rolf and I had the added blessing of connecting with friends from long ago that just happened to be in NYC for various reasons…such a small world!

Rolf and I had the added blessing of connecting with friends from long ago that just happened to be in NYC too…Annemette is a friend from Up With People, lives in Holland and just happened to be in NYC on business!

Tara, Scott and John are also former UWP cast mates and we had a mini-reunion at Moe’s!

So, how do I sum it all up?  Certainly the collective effort of this trip is deeply touching to me…I feel loved and surrounded and lifted up…not only by those who participated in the particulars of the trip but also by those who took care of things at home and lifted us up in prayer.  The trip itself was precious family time together.  I’m not sure we could have squeezed anything else into it. 🙂  Being in the city was invigorating but also exhausting.  I think it was perfect timing for me physically…my limitations in navigating the typical world were very apparent to us all.  I needed the boys’ help to get out of the sitting position most places and Rolf’s help getting off the toilet and in/out of the shower.  As the week wore on, I felt my speech and body maneuvering slower and it was stressful to battle the crowds all day, every day.  I’m hoping a few days in bed will help me bounce back a bit but regardless, it was worth all the effort to go.  I love my family…I love doing life with them…and I love them even more as we journey ALS together.  Thank you, Dream Foundation, for making this trip possible.  Thank you, dear friends, for all the “extras” that made this trip even more memorable.  Thank you, family, for rolling with the punches, making our ever-changing life together look effortless and normal and for making me laugh.  There is so much for which to be grateful.  #iamblessed