Where the Rubber Meets the Road

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This is a cropped copy of a larger image taken just a couple of minutes after Rudy was declared deceased.  I had my reasons at the time when I asked Rolf to document what was going on in pictures.  I knew the full version of this picture was an image I’d want to see…I knew it was a vantage point that would be meaningful to me but I didn’t fully understand how at the time.

It’s not like I needed a picture to insure I wouldn’t forget.  The whole morning is seared into my memory…climbing up on the gurney and cradling Rudy with my hand spread across his chest desperately searching for a hint of movement…and holding his face in disbelief that he was actually gone…just like that (Wait.  What just happened?).  This picture captured that sacred, silent moment before the tragic reality of the situation began to sink in..this moment is the epicenter of my grief.

As painful as this picture is to look at, I’m compelled to frame it or put it into a locket because it is sacred and captures the last time I held our boy…as well as captures his sister’s hand holding on too (which I wasn’t aware of at the time).  It has come to signify that moment when I was forced to entrust the care of our boy back to God and “where the rubber meets the road”, so to speak, in my faith journey.  If there was ever a time when my faith needed to dig deep and find traction, it was in this moment.  Sure, there were countless times in the life of Rudy where our faith was tested (as this blog can testify) but it all played out, even the darkest times, with Rudy by our side.  From the moment this picture was taken, my active trust in God was going to be played out without Rudy by our family’s side and that seemed really foreign…still does.

Fast forward to today…

It hurt to walk through the special moments of Holy Week last week without Rudy…so much so that there was a big part of me that just wanted Easter to be over.  And not  because we were having to adjust to yet another holiday as a family of 5 but because of the nature of THIS holiday in particular…all the talk of  Christ’s death and resurrection and our hope in Him while at the same time desperately missing Rudy was just too much.  To be honest, it was a lot easier to embrace the miracle of Christ’s resurrection and bask in my hope in Him when Rudy was a living miracle…Not to say that the truth of Christ’s resurrection is any less real for me in the wake of Rudy’s death.  I’m not struggling with a lack of faith and I’m not struggling with a lack of eternal hope.  It’s just profoundly…different (I’ve been sitting here for 45 minutes trying to land on the right word and I’m at a loss, so, “different” it is) and even the most miraculous message of truth can fall flat in grief.

Our dear friend “Pastor Bob” (who spoke at Rudy’s memorial @ 26:50) shared about our family’s story in his Easter sermon titled “Our Living Hope” (Click here for the audio of his sermon if you’re interested @ 15:50).  Although I’m blessed by his affirmation and personal encouragement, I really appreciated the heart of his message from 1 Peter 1:3-9.  A secondary passage he referenced in 1 Corinthians 15 spoke to me too:
                                                                                                                                                          17 And if Christ has not been raised, then your faith is useless and you are still guilty of your sins. 18 In that case, all who have died believing in Christ are lost! 19 And if our hope in Christ is only for this life, we are more to be pitied than anyone in the world.  

Verse 19 jumped out at me in particular.  I’m not quite sure why except that the word “pitied” was intriguing to me and then Bob went on to say in his sermon that “the whole point of ‘the living hope’ (as referenced in 1 Peter 1:3 NIV) is that it is not confined to this life because Jesus himself was not confined to this life.”.   I like that and the take away of it all for me is this:  I am not (you are not, we are not, Rudy is not) to be pitied because my hope is not confined to this life and neither am I which is made possible only by the sacrifice and resurrection of Jesus Christ.  This is a powerful reflection for me today, it lessens the sting of everything right now…a little bit…and makes me look at the picture above differently too.

“O death, where is your victory?                                                                                                           O death, where is your sting?”  1 Corinthians 15:55

These moments helped lessen the sting of last week a bit too:

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A quick visit from my mom and brother early in the week…

 

 

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A visit from our niece Heather later in the week…
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The boys home for the long weekend!
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Olivia becoming a permitted driver!!!
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Worshipping with my boys!
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Being together.

 Happy Belated Easter from us to you!

Full scripture references:

1 Peter 1:3-9 (NIV)

Praise to God for a Living Hope

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time.In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.

 

 

1 Corinthians 15 (NLT)

The Resurrection of Christ

15 Let me now remind you, dear brothers and sisters,[a] of the Good News I preached to you before. You welcomed it then, and you still stand firm in it. It is this Good News that saves you if you continue to believe the message I told you—unless, of course, you believed something that was never true in the first place.[b]

I passed on to you what was most important and what had also been passed on to me. Christ died for our sins, just as the Scriptures said. He was buried, and he was raised from the dead on the third day, just as the Scriptures said. He was seen by Peter[c] and then by the Twelve. After that, he was seen by more than 500 of his followers[d] at one time, most of whom are still alive, though some have died.Then he was seen by James and later by all the apostles. Last of all, as though I had been born at the wrong time, I also saw him. For I am the least of all the apostles. In fact, I’m not even worthy to be called an apostle after the way I persecuted God’s church.

10 But whatever I am now, it is all because God poured out his special favor on me—and not without results. For I have worked harder than any of the other apostles; yet it was not I but God who was working through me by his grace. 11 So it makes no difference whether I preach or they preach, for we all preach the same message you have already believed.

The Resurrection of the Dead

12 But tell me this—since we preach that Christ rose from the dead, why are some of you saying there will be no resurrection of the dead? 13 For if there is no resurrection of the dead, then Christ has not been raised either. 14 And if Christ has not been raised, then all our preaching is useless, and your faith is useless. 15 And we apostles would all be lying about God—for we have said that God raised Christ from the grave. But that can’t be true if there is no resurrection of the dead. 16 And if there is no resurrection of the dead, then Christ has not been raised. 17 And if Christ has not been raised, then your faith is useless and you are still guilty of your sins. 18 In that case, all who have died believing in Christ are lost! 19 And if our hope in Christ is only for this life, we are more to be pitied than anyone in the world.

20 But in fact, Christ has been raised from the dead. He is the first of a great harvest of all who have died.

21 So you see, just as death came into the world through a man, now the resurrection from the dead has begun through another man. 22 Just as everyone dies because we all belong to Adam, everyone who belongs to Christ will be given new life. 23 But there is an order to this resurrection: Christ was raised as the first of the harvest; then all who belong to Christ will be raised when he comes back.

24 After that the end will come, when he will turn the Kingdom over to God the Father, having destroyed every ruler and authority and power. 25 For Christ must reign until he humbles all his enemies beneath his feet. 26 And the last enemy to be destroyed is death. 27 For the Scriptures say, “God has put all things under his authority.”[e] (Of course, when it says “all things are under his authority,” that does not include God himself, who gave Christ his authority.) 28 Then, when all things are under his authority, the Son will put himself under God’s authority, so that God, who gave his Son authority over all things, will be utterly supreme over everything everywhere.

29 If the dead will not be raised, what point is there in people being baptized for those who are dead? Why do it unless the dead will someday rise again?

30 And why should we ourselves risk our lives hour by hour? 31 For I swear, dear brothers and sisters, that I face death daily. This is as certain as my pride in what Christ Jesus our Lord has done in you. 32 And what value was there in fighting wild beasts—those people of Ephesus[f]—if there will be no resurrection from the dead? And if there is no resurrection, “Let’s feast and drink, for tomorrow we die!”[g]33 Don’t be fooled by those who say such things, for “bad company corrupts good character.” 34 Think carefully about what is right, and stop sinning. For to your shame I say that some of you don’t know God at all.

The Resurrection Body

35 But someone may ask, “How will the dead be raised? What kind of bodies will they have?” 36 What a foolish question! When you put a seed into the ground, it doesn’t grow into a plant unless it dies first. 37 And what you put in the ground is not the plant that will grow, but only a bare seed of wheat or whatever you are planting. 38 Then God gives it the new body he wants it to have. A different plant grows from each kind of seed. 39 Similarly there are different kinds of flesh—one kind for humans, another for animals, another for birds, and another for fish.

40 There are also bodies in the heavens and bodies on the earth. The glory of the heavenly bodies is different from the glory of the earthly bodies. 41 The sun has one kind of glory, while the moon and stars each have another kind. And even the stars differ from each other in their glory.

42 It is the same way with the resurrection of the dead. Our earthly bodies are planted in the ground when we die, but they will be raised to live forever. 43 Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength. 44 They are buried as natural human bodies, but they will be raised as spiritual bodies. For just as there are natural bodies, there are also spiritual bodies.

45 The Scriptures tell us, “The first man, Adam, became a living person.”[h] But the last Adam—that is, Christ—is a life-giving Spirit. 46 What comes first is the natural body, then the spiritual body comes later. 47 Adam, the first man, was made from the dust of the earth, while Christ, the second man, came from heaven. 48 Earthly people are like the earthly man, and heavenly people are like the heavenly man.49 Just as we are now like the earthly man, we will someday be like[i] the heavenly man.

50 What I am saying, dear brothers and sisters, is that our physical bodies cannot inherit the Kingdom of God. These dying bodies cannot inherit what will last forever.

51 But let me reveal to you a wonderful secret. We will not all die, but we will all be transformed! 52 It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed. 53 For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies.

54 Then, when our dying bodies have been transformed into bodies that will never die,[j] this Scripture will be fulfilled:

“Death is swallowed up in victory.[k]
55 O death, where is your victory?
    O death, where is your sting?[l]

56 For sin is the sting that results in death, and the law gives sin its power. 57 But thank God! He gives us victory over sin and death through our Lord Jesus Christ.

58 So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.

 

 

Spiritual Serenity

I learned recently that the original Hebrew root of “Be Still” means to “Let Go” transforming Psalm 46:10 to “Let go and know that I am God”…and then somewhere on the internet I read that “Psalm 46:10 encourages us to reflect on what God can do in the face of what we are unable to do.”…I like this.  I’ve been reflecting on this mini-paradigm shift of one of the most powerfully understated passages in scripture the past few weeks and I like where it’s leading me:

“Be still and know that I am God.”  Psalm 46:10

I have stamped this verse on jewelry, printed it on bookmarks and I’ve sung more than a few songs about it over the years and it’s meaning has always centered on a physical stillness for me…be still, be quiet, be calm…but I don’t think I’ve gotten it quite right, especially if it’s root meaning is to “let go”, because life has taught me that the process of letting go varies greatly.  Sometimes letting go is clothed in quiet acts of obedience as “be still” might imply but more often than not, my “letting go” is loud.  In recent months my letting go has been clothed in deep, guttural groans of grief but in other seasons of my life it has been clothed in shouts of liberating victory!!  Sometimes it’s wrapped in such promise and sometimes the process is strangled by fear.  Either way, though, what we are left with is the great I Am!  No matter how threatening the storm that is swirling around me may be and no matter what the process of letting go looks like, what God is commanding me to do in this verse is to trust Him…a faith derived from a steady and deep understanding of who I know Him to be.   Let Go and know that I AM GOD!  Sometimes it’s more empowering for me if I switch it up a bit…Know that I am God and LET GO…let go…let go of trying to figure it all out…let go of the worry or shame or guilt or pain…let go of the manmade safety nets…let go of the faith in things that fall short and disappoint…let go of the fear of uncertainty…let go.  

And as it pertains to me specifically in the context of facing my mortality, the process of letting go doesn’t mean to give up or resign myself to a death sentence…no way!  Just the opposite!  The call to trust God and let go is to let go of all the things that might be hindering me from fully embracing the life I am living RIGHT NOW and the promises of God that continue to be true for me…no matter how threatening the storm is!

Although there is a physical calmness in our household (for which I’m grateful), what I’m striving for is a continued spiritual serenity…an inner calm that creates space for life to be richly lived…for all the Geylings.  🙂  Will you join me in that prayer?

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All hands were on deck when the boys were home for spring break…sharing the worship platform with my kids and good friends is truly my greatest joy.
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The MOHD squad had the pleasure of accompanying our niece Jessie on her very first visit to Disneyland last week along with her mom/Rolf’s sis Cora…#happiestplaceonearthbutnotforrolf
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This one was for Rudy!
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Chillin’ with the big guy.
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14 HOURS in Disneyland/California Adventure and we’re still smiling!  Yay us!

It’s All Relative

So, this is an emotionally packed week…the big boys are home for spring break (Ya-hoo!),  Olivia’s long-awaited lacrosse season is officially underway (Go Chargers!), I celebrated my 52nd birthday last week (Cheers to me) and we get to celebrate Max’s bday together as a family on Saturday (so fun!).  It is such a joy to have the boys home…life just feels a little lighter when we’re all together but, at the same time, there is a heaviness for me that is hard to push aside.  It’s the strangest thing…how can life be lighter and heavier at the same time?  Idk, maybe it’s a separation of heart and mind kind of thing…the laughter and fun we share being together lightens the heart but the thoughts that occupy the mind weigh heavier as we journey the losses together.  I’m not sure how it all plays out exactly but the reality is that I feel Rudy’s absence so much more acutely when the 5 of us are together and am left missing him more but I wouldn’t have it any other way because he also feels closer when we’re all together.  It’s all so relative.

I had a bit of an existential crisis last week around my birthday.  It wasn’t as simple as fretting over turning another year older.  No, I was happy to be celebrating another birthday (I would celebrate 40 more without one complaint!) but my crisis was centered more in what felt to be the meaninglessness of it all.  Hear me out, I don’t mean in any way to minimize the meaning of the 52 years I’ve lived so far or the value of the years I have left but there is something meaningless for me in the “number” being celebrated because it, too, is relative…AND I don’t mean in the hopeful “5o is the new 30” sort of way.  It works the other direction too…especially with ALS.  I’ve heard ALS described as an expedited aging process and I’m finding that description to be true.  I may have just celebrated my 52nd birthday but I feel more and more like I’m in my 80s as I work hard to navigate the bustling world around me with my growing limitations.  When you’re 52 years old and you can barely pull yourself up off the toilet seat or walk down the hallway to the kitchen and back without getting winded, numbers cease to provide an accurate framework of expectation and, therefore, become relative.  In short, the number of candles on the birthday cake really doesn’t matter anymore.  So, what does matter?  Well, I think the knee-jerk response to that question is often “quality over quantity” but even that can fall short depending on what your definition of “quality” is.  One of my favorite books of the Bible is Ecclesiastes which is interesting to me because it’s theme is this very subject and I’m experiencing it at a depth never before realized…the author’s questions are my questions and there are no simple answers.  I guess it’s time to reread Ecclesiastes.  😉  In the meantime, no more birthdays for me…I’m going to find a way to celebrate EACH day.

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The boys are back in town, boys are back in town…
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Yay! Girls lacrosse is IN SEASON!!!
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Best belated birthday gift!

Another special gift this week was the opportunity to see Max’s concert choir perform my favorite piece they do at the last stop of their choir tour here in Santa Barbara!!!  This is an original piece written by Max’s professor depicting the day of Pentecost…(Acts Chapter 2)…I wish you could experience it in person but here’s a little video sample:  Turn up your volume!  😉

The Lenten Season

It’s hard to believe that we are less than 5 weeks away from Holy Week which means we are well into Lent already.  I love that the Christian calendar has “seasons” of preparation…the Advent Season to prepare for Christmas and the Lenten Season to prepare for Easter.  As I grow older, I appreciate more and more the discipline of setting time aside to prepare for and anticipate the beauty of these bookend celebrations in the life of Christ…taking time to prepare makes them so much richer.

BUT as has been the case with ALL the holidays that have come and gone so far this first year without Rudy, Surprise!  Surprise!, Lent feels different this time around too.  A week or so before Lent began, Rolf and Olivia were discussing what they were going to “give up” until Easter (as is tradition) when I blurted out “I’ve given up enough this year.  I’m going to pass.”…I said it in jest, initially, but the thoughts behind the words lingered which led me to reflect on it a bit.

The truth is, my sassy remark is exactly where my heart is…I do feel I’ve been in a looooong season of being forced to give up quite a bit…not only Rudy and a daily life as our family knew it but also my own physical abilities in recent months and things I love to do and certain dreams for my future.  Granted, these are not things I willingly set aside for the purpose of focusing on and drawing nearer to God (which is the purpose of fasting from something meaningful during Lent) but the result has been the same nonetheless…to a comforting extreme.

The thing that strikes me the most in the snapshot of my life today is that as my world has gotten smaller and smaller over the past 7 months, God’s presence has gotten bigger.  One of the primary purposes of both the Advent and Lenten Seasons is to make room for God in our full, cluttered lives and I’ve experienced over and over again that He will fill whatever space we allow Him to occupy…and given what I’ve experienced the last several years with Rudy and in the last several months mired in my own disease, there is great comfort in knowing that God is big enough to continue to fill the empty spaces left by my shrinking world.

I shared about my journey at a Westmont Chapel several years back and how at every significant crossroads in my life, I was led down a path that seemed to narrow my world and my impact on the world compared to what I planned when I graduated from college…it sure isn’t lost on me how the events that unfolded just weeks after Rudy passed away are a continuation of that same journey.  I remember saying to God at some point during Rudy’s life “How much smaller can my world get?”.  Are you kidding me?  It feels like such a foolish question now!  What a strange journey this is…but it is proving itself consistent in many ways and God has been consistently present in it all…filling spaces and bringing life to hardened, dead places of the heart along the way.  Thankfully the reflections I shared that day at Westmont still ring true for me today, especially this prayer:

My prayer is that you recognize God’s grace in your life and experience the power within it…providing us hope in all circumstances, blanketing us with peace in all circumstances, enabling us to love one another in all circumstance, bringing purpose to all circumstances and allowing, at times, for heartache and joy to coexist in difficult circumstances. 

My friend Emily sent me this amazing book of quotes she compiled over the last year organized in 40 daily readings to be read over Lent…this is her 9th book!  (What a gift…thank you Emily! )  If you are a person who participates in the Lenten tradition, consider this from Emily’s forward:

“Ruth Haley Barton says, ‘unfortunately, most people reduce the Lenten season to the question, “What are you giving up for Lent?”.  The real question of Lent is, “How will I return to God with all my heart?”.’  Along those lines, my friend Susanne talked about Lent in this way ‘it is not about becoming lost in feelings of brokenness but about cleansing the palate so that we can taste life more fully.'”

Now, that is rich!  I love that and I look forward to exploring that some more in the weeks ahead.  Blessed Lenten Season Everyone!

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Oh Crap, It’s Valentine’s Day!

I forgot about Valentine’s Day…I was so relieved we made it through the holidays and got so focused on port placements & infusions that I totally spaced how significant Valentine’s Day would be this year without Rudy.  How did I not see it coming?  Valentine’s Day was my favorite holiday to do with the kids when they were small because it was so much fun to prepare Valentines for friends and family together.  Rudy’s enthusiasm added a whole other dimension to the fun.

When I opened the Valentine decoration bin this week, I was surprised to find the really cool Valentines Rudy and I bought on sale last year for him to give out this year!  He was so excited when we found them.  He would have been thrilled to share them with his classmates…dog gone.

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Of course, I think the tradition we’ll miss most this year is the annual recording of “Will You Be My Valentine?”.  How grateful we are for this crazy collection of videos.  Looking at pictures and videos of Rudy was painful for me in the wake of his passing, but they’re now becoming a huge comfort.  Rolf and I find it’s pretty easy to get lost (sometimes for hours) in the pictures and videos we have of him.  And even though we have hundreds of images of him…I wish we had hundreds more.  Once in a while a friend will send us a picture of Rudy we don’t have and it takes my breath away…such an unexpected gift.  🙂

Well, we may not have a new rendition of “Will You Be My Valentine?” to share or a fun report about a Valentine exchange at school but it is Valentine’s Day nonetheless and, therefore, an opportunity to tell you how much you are loved and how much we appreciate the love extended to us over and over again.  We are rich in relationship and we don’t take that for granted!  Happy Heart Day dear ones!  We love you.

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The gallery of Valentines from years past.

Be Still My Soul

It’s February.  We’ve turned another page in the calendar…I shared recently that I feel stuck between two epic life experiences, the loss of a child and a terminal diagnosis, which makes the passage of time complicated.  The challenge to live in the moment and not get overwhelmed by the grief of the past or the anguish of the future continues to require a daily conscious effort.  Embracing “today” continues to be the priority.

The past couple of weeks have been filled with a balance of time with good friends and family along with continued disease management.  My permanent port was placed on Friday January 26th and my second round of Radicava infusions started today with the new port.  The port has been more tender and cumbersome than I expected but it is healing nicely and, I suspect, will become second nature in time.  I also started to take a low dose anti-depressant medication which seems to be helping to take the edge off a bit.

At the urging of my local neurologist, Rolf and I visited the multi-disciplinary ALS clinic at Cedars Sinai in Los Angeles on January 31st  (I’m including Rolf’s detailed notes from the visit below for our records.)   I can’t say I had a strong felt need to be assessed again and I wasn’t particularly motivated to make the trek down to Cedars but we did get some helpful information and I’ll probably go again in 6 months.  The sobering reality that is reaffirmed with every consultation I go to is that no matter the state of the art facility or the resources at hand, all anyone can really offer me is confirmation that this is a “devastating” diagnosis and the promise to keep me comfortable down the line.  Ugh.  There’s a big part of me that wants to gracefully back off and just live my life out naturally without medical intervention but at the same time I have this Charlie Brown-esque hopefulness that maybe, next time, the football will stay put…that maybe our determination and commitment to the process will result in something tangible.  I don’t know…I wish I could make sense of it all…I wish I had a strong feeling one way or the other and didn’t respond to each recommendation with “well, it couldn’t hurt”…I wish it wasn’t all so vague and subjective.  Blah, Blah!!

ROLF’S NOTES:

Cedars-Sinai ALS Clinic visit summary

On Wednesday (1/31), we visited the Cedars-Sinai ALS Clinic.  We were told ahead of time that we were only scheduled for a “consultation” and not the full clinic, as insurance will only approve the latter after a referral from an initial visit with a neurologist.  Even so, Dr. DaSilva called ahead to see if a few other specialists would be able to stop by while we were there and we were very glad this was the case–made the drive worthwhile.  We arrived at Cedars at 8:45, got checked in shortly after 9 and were quickly taken to an exam room–where we stayed until almost 1pm.  There were a few breaks of 15 min or so, but for the most part it was a steady parade of doctors, therapists and a few of what I call “PUPs” (People of Unclear Purpose–hospitals are full of clipboard carrying mystery people that come in and ask you questions.)

We started with a pulmonary function test and then Dr. Elsayegh (Pulmonologist) came in for a consult.  There was good news here as Dr. E explained that the lungs are a key determinant in ALS.  As difficult as it is to lose functionality of extremities, etc., when the muscles that facilitate breathing get impaired, then major interventions have to be considered (breathing machines, traches, etc).  The good news here is that Trish’s lungs function is exceptionally good.  I forget the exact units, but typical lungs function at 80% and when things decrease to 60 it gets problematic.  Trish was at 102 (probably thanks to all her singing), which means there’s considerable margin for her. While no one can predict how quickly the disease progresses in any individual, this could make for more of a time window.

After that, we got a very thorough exam from the neuro fellow before Dr. Lewis (Neuro) came in.  Dr. Lewis was unhurried and spent quite a bit of time with us doing his own exam, answering questions, and explaining research studies.  It’s reassuring to have the attention of a very intelligent and compassionate expert, but if only he didn’t have to employ his gift of communicating clearly and caringly about really difficult realities:  it’s a devastating diagnosis, there are no cures, no clinical trial out there is anywhere close to landing on a cure.  There are two research studies Cedars is conducting that Trish agreed to participate in as they only involved interviewing and a blood draw, so Dr. Lewis spent even longer with us conducting the study exam and interview.

After that came a speech therapist, dietician, ALS Association rep and probably a few more people I’m forgetting. The whole session was clearly being coordinated and there seemed to be good communication between the specialists, which was both efficient and caring.  It’s impossible to tell the story of Trish’s diagnosis without bringing in Rudy’s death in July, so it was a comfort to not have to repeat the story too many times–most people came in aware and led off with compassion.

I can’t say we didn’t walk away a bit disappointed.  We’ve learned from HLHS and ALS that, as much as you try to keep grounded and aware that a diagnosis is terminal, there’s still a part of you that goes into every appointment wishing you’d hear someone tell you there’s a cure.  But it is what it is.  What we can be thankful for is the assurance that we’ve got good care.  The Cedars team would see us every three months if we’d like but since so much of what they said affirmed the care we are getting here in Santa Barbara, for now we will plan on seeing them every six months–unless a need arises before then.

 

I was going through some old CDs the other day and came across an original CD my friend Grace recorded over 15 years ago!  She invited me to sing two of her songs on the project and I was struck by the timeliness of them for me now…kind of prophetic and a sweet encouragement from a young Trish and Grace…

Closer To His Heart:

Be Still My Soul:

Speaking of encouragement, here’s some more…

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My niece Rachel and her new hubby Josh flew in for a quick visit from Nashville. Of course, we had to make a stop at Kyle’s Kitchen…Rudy showed up and photo bombed this pic. 😉
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We got a rare glimpse into Wilson’s ROTC world with these great pics from a Ranger Challenge he participated in a couple of weeks ago. ‘So proud Wilson!!

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I’m being well taken care of on so many fronts and a great example of that is my good friend Rick who went above and beyond to make sure I have a secure cup holder on my walker and a custom-made ramp up to the worship platform at church!  🙂  Ha ha!  I am blessed and I’m so very grateful for the ongoing show of support from so many…as we’ve been reminded multiple times this past month at all my appointments, this is going to be a long road and I’m so grateful the Geylings aren’t doing it alone!!

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Thank you for the ramp love Rick!!

 

Six Months

Today marks 6 months since Rudy passed away.  Rudy might have been small in stature and limited in his physical and cognitive abilities but his presence was so big.  He filled whatever space he was in and I’ve said many times in the last few months that losing Rudy was like losing a small dinner party.  His absence cuts so deep and has changed the landscape of our space forever.  To say I miss him isn’t sufficient but I just can’t capture the depth of my longing in words today…only in groans.

‘Love you deeply Rudy!  Your joy and enthusiasm continue to inspire us… may you experience the love behind our longing today!

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Rolf captures it well in the tribute he posted on social media this morning:

Six months 
of silence so deafening
Of an ache deeper than words
Only because we never knew smiles could be that big, 
laughter could be that full,
and any moment could contain such bottomless joy.
I love you, Rudy.