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
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…
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
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!!
He is never far from our thoughts in all that we do, that’s for sure.
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.
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…
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)…
It was so much fun watching him have a blast doing something he loves to do…
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!!!!
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…
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.
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.