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.