Relentless

September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.

If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.

We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.

2 Years

Our family appreciated having a quiet day yesterday filled with various individual activity as well as time together. We even made time for a viewing of Cars… which never gets old. Vivid images of July 25, 2017 flooded my mind all day but images of happier times also flooded my mind and helped temper the pain a bit. A big thanks to all who sent cards and messages via text and email… every one a reminder that we are surrounded by friendship and love. We love you right back.

Gap Fillers

Having experienced the front lines of two major health crises, I’ve grown in my understanding of and appreciation for our health insurance. We are blessed and I’m grateful but navigating the complicated health care system in general is never free of frustration or big gaps in coverage & care. As Rudy’s primary caregiver and now as a patient, I’ve shed my fair share of tears over denials and bureaucratic dead ends that just don’t make any sense and end up feeling like salt in an already wicked wound. The big gap we’re facing right now is in home health care. I don’t qualify for short term rehabilitative care, nor long term hospice care (yet) and government assistance through the social security administration based on my diagnosis is out of my reach because of my lack of work history. I don’t share this to whine or engage in a political debate about health care reform but simply to illustrate that no matter how hard we try to protect and take care of ourselves, there will always be gaps in the system…which is why “it takes a village” and why I’m so grateful for mine.

For the past year and a half, these lovely ladies have been on a regular daily rotation doing my house chores & errands and in recent weeks, have helped fill the gaps in my personal care! It is humiliating and sometimes uncomfortable but how grateful I am for the tender, hands on care of these friends willing to learn how to fill a feeding tube, wipe my dirty derrière or give my fatigued muscles endless massages with no promise of a payback!!! I am humbled.

What blesses me further is that these women represent a fraction of all the friends who have offered to help…and those who come alongside us in a variety of other ways too numerous to list. So, dear village, in case I don’t say it enough, thank you. Thank you for being the hands and feet of Jesus for me and encouraging a fragile heart in the process.

My favorite gap fillers of all!…

The more dependent I become, the more grateful I am for my peeps. But there is a flip side and the more dependent I become, the more I fear being remembered as “ALS Trish”. Rolf eloquently addressed my fear in his latest poem:

“I hear you singing
The melody dances
Gracefully floating
Spinning in the air above me

I hear you laughing 
From deep within
With head thrown back
Wind and sun in your hair

I see your eyes 
Focused and inviting
Drawing so many close 
Into safety, warmth and friendship

I see your hands
Nimble and skilled
Creating beauty
Patting a happy head
Bringing order
Gently soothing a troubled little body

I hear your voice
Softly reassuring 
Forging connection
Welcoming and connecting.

Committed to see what’s really you
Not the distortion before my eyes
The preciousness of each second 
Makes the robbery of so many days 
more gutting a crime

To think that love could ask this much
Yet leave me here with empty arms
Though tears may fill my eyes
They won’t be what floods my memories

I promise”

The dedication of the remodeled rescue mission on June 20th was so rich. The generosity of so many resulted in an overwhelming honor for which our family is deeply grateful.

We Wish You A Merry Christmas

 

The boys got home late last Friday night and have already enjoyed a week of pre-Christmas fun.  Poor Olivia had to endure one last week of school but is officially on her Christmas break as of this afternoon and is ready to party.  We are planning on having a quiet Christmas here at home and looking forward to a Geyling Family reunion in the days following Christmas.

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The boys at the SBRM Christmas celebration with Nancy, a longtime friend and former(!) homeless guest. 🙂

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We wish you a very Merry Christmas, dear ones.  I know I’m not the only one trying to find balance this season…longing to feel the suffocating burden of grief and pain lifted for even just a moment…looking for fresh revelations of God’s love.  My prayer is for us all to be engulfed by tangible expressions of God’s love, overwhelmed by His light in whatever darkness we may find ourselves this Christmas and to have lots of reasons to laugh.  Bless you friends!

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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!

 

10 Years

Today is October 1, 2018.  Today would have been Rudy’s 10th Birthday.  Double digits!!!  How proud Rudy would be!

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October 1, 2008 was a Wednesday. I went into labor a month early and because of the high risk nature of my pregnancy, I was transported to UCLA from SB Cottage Hospital by ambulance. There were a lot of tears that day but I didn’t want Rudy to see sad pictures of his birth day so we made sure to capture only smiles in the pictures.

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His was a quick labor…he was eager to get his show on the road!

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He was immediately whisked to the NICU and sedated to keep him calm before his open heart surgery.

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Soon after, he was transported to the CTICU for closer monitoring by his cardiac team.

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The kids’ first meeting…

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That was a scary first introduction for the big sibs and I remember being so proud of them…they were so brave and respectful and compassionate and inquisitive and funny and concerned…they were so themselves!

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My head hurts.  Today is harder than last year…I think I was in shock last year, distracted by so many other things going on and numb on some levels.  Today I’m feeling grief that is deep and specific to Rudy alone.  His presence is profoundly missed as Rolf captured in his reflection for today…

On Rudy’s 10th Birthday:

The collection of broken remotes hasn’t grown since you left,
Yet I’m acutely aware of how many potential additions now lie readily within your grasp—
Down low on the couch,
Right there on the end table.

My full coffee cup sits in the danger zone,
Precariously next to me on the couch cushion,
My free hand always at the ready should you pounce. 
But there’s little chance of that.

You would be too tempted by how easily the DVD cabinets could be opened and emptied,
We only recently realized there’s no need to keep the doors tied shut.

Or the lure of the open front door might prove irresistible 
Provided you still remember that too much giddiness leads to detection. 
If you could suppress the urge to squeal or call out “See ya!”
Who knows what adventure might await?

How I long for a few moments of panic,
Outing my parenting gaffe to the neighbors as I call out in search of you.
I’d happily make sense of all the books dumped out in front of the bookcase,
Trying to figure out where to tape in all the torn-out pages.
Lots of time for that since there’s no Hot Wheels clogging the tub drain.

I miss your happy chaos.

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Rolf, Olivia, Oma and I will celebrate our boy later today with a trip to Kyle’s Kitchen and a special dessert (hopefully Oma’s chocolate roll cake!!!).  I wish the big boys could join us but we’re all close in thought, for sure.

Looking at all the pictures on this day ten years ago, I’m reminded of how uncertain everything was…there was real concern that Rudy wouldn’t survive his birth or his first surgery or his harrowing recovery…there were so, so many wrenching twists and turns in the very beginning.  Honestly, it’s hard to look back in retrospect, to see it all in it’s entirety and comprehend how it was even survivable for any of us.  We may not be celebrating 10 years with our boy today but we do stop and celebrate the 8 1/2 years that were his life…a life that was rich and impactful and truly happy despite all of the challenges.  Happy Day of your Birth Rudy!  ‘Forever grateful for you…forever in love with you…forever changed by you.

 

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.