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!!!

 

My Faith > My Fear

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).

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Rudy’s Buddy Bench at Mountainview School
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Reunited Roomies!

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.

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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.  😉

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2 Corinthians 4:16-18

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.

Round Two

We are thrilled to have the boys back in town…Wilson arrived home from Ft. Knox a week ago today and Max got home Sunday night after his month long tour!  Yay!  We have just one week more with Wilson before he heads back to APU and Max will be home for a couple of weeks before he returns to Point Loma.  The summer has passed by much too quickly…as it typically does.

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Olivia is particularly happy to have her big bros home!!!

Since the boys were both gone on the 25th, we appreciated having a little time together at the cemetery so they could experience the “mountain of cars tribute” for themselves.  They got a chance to arrange them all and, as boys do, had to stop and play with them before they all got placed.  Ha Ha!  Rudy would be so pleased.

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Thank you Lucas C. for the fun hat you left for Rudy!!!

Last year on this day, August 7th, we laid our boy to rest.  I’m reposting the video of Rudy’s funeral service and his memorial slideshow below…followed by a few images from his burial that I didn’t post last year.   It was a remarkable day…so full of love and many tears but laughter too.  In the days following Rudy’s death, his journey back to California from Guymon, OK by way of Oklahoma City was such a long one and the arrangements for his service and burial here at home added another week to the whole process so when the day finally came, as painful as it was to say our final goodbye, it was time…it was time to lay Rudy to rest.  Commemorating today is definitely part of observing the 1st year anniversary for us and I thank you all for your part in holding us up these past couple of weeks in particular through your prayers and love.

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Rudy’s burial at the Goleta District Cemetery.

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“I’ll Fly Away”

So many wonderful sights and sounds of love that day!!!

Early Wake Up Call

Rolf, Olivia, Harley and I ended July 25th cuddled in bed and fell asleep watching “Cars” the movie.  🙂  Thursday July 26th started off with an early wake up call for us all as Olivia headed off to volunteer at a local kids camp and Rolf & I headed to my appt with the neurologist.  Because of a scheduling delay, I haven’t had a neurology consult since March so I was bracing myself for a tough reality check as we discussed my progression of the past few months.  I’ve noticed increased weakness in my legs (especially in my knees) and I’m beginning to notice weakness in my arms.  Dr. D confirmed both in her physical examination.  In addition, she confirmed my need for a wheelchair based, at this point, on my inability to lift my left leg against gravity (anti-gravity).  This led to a discussion about mobility.  One of the things I’m finding confusing in the management of this disease is the seemingly contradictory but equally passionate recommendations out there.  I’m told to conserve the limited number of neurons I have left by limiting how much I walk and exert myself while at the same time to keep walking…to walk as long as I can.  What?!  Dr. D confirmed both are true but it’s a delicate balance.  Conservation is key but maintaining mobility is also important especially in maintaining my ability to transfer from one surface to another.  The goal is to not push myself to the point of fatigue…I feel fatigued EVERY day (particularly at night)…another indicator that it’s time to manage my movement a little better.

I know the whole situation is out of my control but one of the things that makes these milestone moments in the progression of this disease so difficult for me is not wanting Rolf or the kids to ever think I’m not trying hard enough…as if my efforts could have any impact on whether or not I need a wheelchair.  I know it’s an irrational concern but I just want to scream “MY BODY MAY BE GIVING UP, BUT I’M NOT!!!!”.  Rolf expressed it well when he said that when we managed Rudy’s care, there was always hope of improvement in some areas and ultimately hope of getting him to another treatment option, for example, a heart transplant; with me, we’re in preservation mode…it’s a totally different mindset.  There were a lot of emotional realities we had to face yesterday on the heels of an already emotionally charged week.  I’m still feeling pretty wiped out today and praying for relief from the physical aches of grief…stinging eyes, neck and back pain, headache.

So what do we do now?  The ALS Association hooked us up with a loaner wheelchair to use for now.  I asked Dr. D if I could just get by with loaners and not bother getting my own…she said loaners are okay for now but as my needs change, it’ll be important for me to have a chair custom fit for my specific needs.  Makes sense.  So we begin that process that includes PT evaluations for the insurance company, etc.  In the meantime, Rolfi was johnny-on-the-spot, came home yesterday and already built me ramps giving me access outside our bedroom to the kitchen and outside our front door!    Grateful for that man.

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Rolf on a test drive!

Ironically, Olivia volunteered at a wheelchair camp this week (and made a quick appearance on our local news!  Ha Ha).  I’m proud of her for making the choice to be a part of this camp this week (we had hoped Rudy could attend this camp at some point but he wasn’t independent enough when he became age-eligible).  Her week was filled with long, fun days surrounded by great friends and being a special help to new camper friends!  I admire her strength and grace.

Wilson made it in from his extended field training and is back on base at Ft. Knox.  He honored Rudy on the 25th with a 12 mile, timed ruck that completed his formal summer training.  We can’t wait for his return next week and will soak up the last couple of weeks we’ll have with him before he starts his senior year at APU!!!

Max and the band are back in California and helping to staff a summer camp down south this week.  We catch glimpses of him on social media working hard and having fun!  He and his team have one more week of camp and then, he too, will be home for a couple of weeks before heading back to Point Loma.

Pursuing things we are passionate about is truly life-giving and I find it profound that all three big sibs were pursuing their passions individually this week while at the same time collectively honoring their little brother by living full.  Grateful for these kids of ours.

🙂