Suffering

Wilson is getting a lot of blog press this week!   😉  He is two weeks away from graduating so there will be more fun to report soon but this is a packed season for him both literally and emotionally as he turns the page on this very special chapter in his life at APU and transitions to the next.

Thanks to technology, we got to tune into a livestream of Wilson’s last chapel on campus and his worship team led the students in one of my favorite hymns.  How special!  Wilson’s prayer after the song ministered to me specifically when he prayed “may we be reminded of the visceral reality of the crucifixion”.  More on that in a minute but here is the hymn and prayer filmed from the comforts of home…;)

I led worship at our church on Palm Sunday and got a little weepy missing Rudy as the children paraded around the sanctuary with their palm fronds…

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Palm Sunday 2017

Through my tears, I shared an insight that came to light for me the day before while reading the gospel accounts of Jesus’ entry into Jerusalem (what we commemorate on Palm Sunday).  I always considered Jesus’ suffering beginning in the garden of Gethsemane right before He was arrested when he asked God to take away what was to come and cried tears of blood…such a vivid image of his anguish.  When I read Luke’s account, however, it’s clear that Jesus was heartbroken even before entering the city days earlier.  He knew what was coming and wept for Jerusalem.  What a sad and lonely few days that must have been for Jesus.

Although I’ve spent lots of time thinking about it,  I’ve never really been able to identify with Christ’s suffering.  I don’t know why…maybe it’s because of my Protestant upbringing where we can sometimes rush past the sorrow of Good Friday to indulge in the much more fun truths of Easter morning…or maybe it’s just how I’m wired but because I have the benefit of knowing Christ’s amazing victory, the depth of His suffering is hard for me to grasp and I think that’s okay…maybe the practical take away and value of pondering the Passion is not that I identify with Christ’s suffering but rather that I know that Christ is able to identify with my suffering…particularly comforting to me now.  So, for me, today, to be reminded “of the visceral reality of the crucifixion” is to be reminded that my God, my humble Savior, the One who conquered the consequences of sin for me understands what it means to suffer and therefore understands my deepest heart cries.  Thank you Jesus!  Thank you for your empathetic love in the here and now and for the gift of eternal life to come…your journey of suffering gives me both!!!

In other news:

Olivia is TWO goals away from reaching her 100th varsity goal…we’re hoping she’ll reach this LAX milestone at Tuesday’s home game against San Marcos.  If you’re local, you’re welcome to join us at DPs football field at 6pm.  No individual athlete reaches these kinds of milestones alone…it’s a reflection of the whole team working well together and it’s such a delight to watch these girls play!

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Thanks to Greg Lawler we got some fun shots of last Tuesday’s exciting win against Cate!
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Not a bad backdrop for lax!
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Brooke battling for Olivia’s draw.
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GOAL!!!

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Cutest fans ever!
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Celebratory dinner at Kyles with Coach Sam!!

The MOHD Squad is excited to have the boys home this weekend.  ‘Wishing you a blessed Good Friday and Happy Easter dear ones!!!!

Life Lessons

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Our biggest boy turned 22 on Tuesday and he spent a good bit of his birthday preparing for and sharing at an FCA (Fellowship of Christian Athletes) meeting on his campus.  Luckily a friend taped it so we could enjoy it too.  I’m so grateful for Wilson’s willingness to share and glimpses like this into the kids’ lives whether it be them sharing from the heart or their musical performances or athletic competitions because it’s all evidence of life being fully lived – especially important to me right now.  Being able to process and finding healthy outlets are key to navigating life’s challenges and I’m grateful the kids are learning these important life lessons early.  We’re also learning that we process differently (i.e Olivia’s art, Rolf’s poems, Max’s songs, Wilson’s testimonies, my blog posts to name a few)….and that’s not only okay but is something I cherish because the variety makes the collective experience so much richer.

Wilson, thank you for your loving tribute, for the reminder of all the goodness in Psalm 23 and the challenge to “maximize God”…well done!

 

Speaking of healthy outlets, here’s some more…

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Fun with friends at Switchfoot!!!
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Max rockin’ the scoober in some fierce Ultimate Frisbee fun at Loma!

The DP Lady Laxers are on a fun winning streak as they near the end of their regular season…

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Celebrating at Kyles Kitchen

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Cheered on by Gma Jo and Aunt Michelle!!

 

Rolf’s latest poem:

Put down the scalpel
Take off the apron
no need for the broom or the gloves

Too many words only bring more confusion 
The deepest mining won’t unearth a reason
Or uncover any satisfactory solution

The suggestions were all obvious
before they were made
None would be as welcome 
as some company in the helplessness
Another to simply marvel at the mess

Yearning to draw close enough to feel the fire’s warmth against my cheeks
Yet primed to leap back into darkness 
Your eyes know 
Your touch welcomes me where a grab will scare me off

Let me hear your small talk
Let me chuckle at your jokes
Not looking to be fixed
Just to be OK for a moment

No right thing to say
Words don’t bring the comfort
Of a companion in the quiet

Disclaimer #2

It’s time for another disclaimer.  The weakness in my arms and hands is making it harder to write and type and so I’m falling behind in my correspondence.  Rather than fret over it, let me say I read everything whether it be a card or comment or email or text or IM and I appreciate EVERY communication that comes my way.  So please, keep ’em coming and know that if my responses are delayed or curt or whittled down to an expressive emoji, it isn’t due to a lack of interest or gratitude…simply a matter of mechanics.  😉

It’s getting hard friends.  The growing number of limitations and the practical implications can be crazy-making.  After a super fun day with my dear friend from high school Annie & her daughter Sara visiting from Indianapolis and a fun win for the DP lady laxers, I had an unsettling choking incident at dinner on Tuesday night which wore me out and led to difficult transfers once we got home and a fitful night’s rest.  I admit the sequence of events left me feeling defeated & desperate.  Then, Rolf & I went to my neurology check-in the following day and we crossed paths with another patient farther along in the journey.  I looked at Rolf and cried tears of gratitude for where I am and panic about where I’m headed all at the same time.  Up, down, up, down…the roller coaster is real and it’s a constant challenge to live in the moment and not lose sight of all the goodness in my life…so much that is good!!!  Lessons in perspective regarding the physical, emotional and spiritual experience in this journey are reiterated over and over…with increasing depth and meaning as time goes on.

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Shortly after my diagnosis a year and a half ago, I mentioned how I felt God was telling me that my ALS journey was going to be just as much (if not more) a spiritual one as a physical one.  How very true that is turning out to be.  Ironically, it is taking me being stripped of everything…systematically…little by little to show me how integrated AND how uniquely separate my spiritual journey is to/from my physical existence.  ‘Sounds kind of mystical and I’m sorry about that because I don’t want to lose you.  I think what I’m trying to say is my faith experience isn’t about “being spiritual” but rather recognizing that I am spiritual, aligning myself with what God is doing all around me and choosing to spend as much time on my spiritual needs as I do on my physical needs…making the day to day not only purposeful but full of life…especially now.  As a Christian, I believe that God put this all in motion, Christ reconciled me to God in relationship and the Holy Spirit exists to empower and guide.  I have such a greater appreciation for the triune as time goes on…a multi-layered expression of love in a multi-layered life experience…especially now.

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Harley and her hooman!
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The California wildflowers are in full bloom after all the rain we’ve gotten…

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I love this combination of poppies and lupine…
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…reminds me of my favorite Rudy school art project!!

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Fake It ’til you Make It…

…is a helpful life hack at times.  Not that I condone being “fake” in general but there are times when it is helpful to buckle down and imitate confidence until our imitation begins to generate the real deal.  😉  On some levels, I think I’ve been living out this mantra for the past couple of years…especially in the months leading up to my ALS diagnosis when I knew something was “off” but figured it would most certainly get better in time so I kind of “faked” it (or at best “downplayed” it) waiting for the upswing.  Even since my diagnosis, I’ve been able to downplay the debilitating aspects of this disease in public and confidently interact with others regardless of how I was feeling on the inside.  I am, however, crossing that threshold…I can no longer “fake” it.  No matter how hard I try to keep functioning, there is a point in the day when my body just won’t move anymore.  No matter how deep I dig to will myself to keep my mouth moving in a conversation, there comes that moment when my mouth can no longer form the words.  My body has a mind of it’s own.  It’s surreal and I feel like I’m living a scene out of the 50s cult classic “Invasion of the Body Snatchers” but it IS happening.

This has been made clear to me the past couple of weeks as we’ve had a full calendar of events requiring me to interact with lots of groups of people.  “Being present” isn’t something I want to stop doing but I do feel like I need to start wearing a disclaimer around my neck…

“I may not be able to converse like I used to or express all that I’d like to say to you, I may even stop talking mid-sentence, but I’m here…I’m taking you in…I love that we’re sharing this moment…when you give me a hug, I’m hugging you back…when you tell me ‘I love you’, I’m loving you too.”  

I have a voice generating device that will help me communicate needs and wants as time goes on but I’m not quite sure yet how effective it will be, especially in group settings.  We’ll see.  The point is my days of  “faking it” are long gone and the “hospital gown” that is my life is not only untied at this point but flapping wide open with each gust of wind that seems to expose a new reality in this disease’s progression.  Part of me wants to insulate myself and not confront the humiliation of uncontrolled bodily function but thankfully there’s a bigger part of me that could care less…so I’ll be out and about as long as I possibly can, flapping gown and all, you’ve been warned.  😉

Here are just some of my recent outings:

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Celebrating our Global Leadership Connection scholarship winner. 😉
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A very special outing to the Ritz-Carlton with our good friend Tami. 🙂
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Extra fun with Max on his 20th Birthday!
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Grad dinner #1 with the Bethel House ladies!
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Grad dinner #2 with the men!
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A strong show of support at Olivia’s lax game last week!
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Church women’s craft and fellowship night!
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Sharing in the joy of Coach Sam and hubby’s little bundle at the Lax Team Shower! P.S. Rolf and I placed 1st and 2nd in the “draw a baby on top of your head” game!!! I’ll let you guess which one of us won the highest honor!!! Ha Ha
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I just love these girls!
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Soaking up the worship at the SBRM graduation with my former singing partner Darlene and Olivia! So good!!
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Church fundraiser with Oma!

Although I haven’t felt the need for a hired care giver yet, I have grown increasingly dependent on Rolf and Olivia and I am beyond blessed by their innate ability to (seemingly) effortlessly care for me…especially Olivia.  I ask her to do things for me that no 16 year old should have to do but I ask her because she is more than capable and because I genuinely prefer the way she does things…i.e. she puts my hair up in the best high ponies or french braids and there is an awful lot of hugging and high-fiving that goes on during transfers on and off the toilet.  There is no fuss or drama with this girl and I couldn’t be more proud of her many exceptional qualities!  Her options for the future seem endless to me.  So proud of you little girl!!

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As always, I sure do appreciate your prayers…I feel guilty that our friendship is so focused on me and my needs at this point but know my mind is flooded with thoughts of hundreds of people every day and I do pray as I feel led but if you want to send me specific prayer needs, I’ll do my best  to add them to the list. 😉

Love and more love!

 

 

 

 

 

 

Out of the Mouths of Babes

Just a couple of hours after I posted my last blog post, I got some sweet encouragement in the form of an email from “Tommy Walker Ministries” highlighting a new song written by Tommy’s daughter, Emmie…a friend since 2001 when our families attended the same church in Los Angeles.  I had to dig pretty deep in the Rudy’s Beat archive to find this picture of Rudy with a much younger Emmie in 2009.  😉

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Ahhh, and here’s another gem from around 2006…  🙂

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I was blessed by Emmie’s song and sent her a text the following day to tell her so…here’s our exchange:

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Yay!  She’s such a sweetheart!  Take a listen…I just know you’ll be blessed by it too:

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I’m grateful for the circle of creative and thoughtful young people in my life who continually remind me whether through music or art or written word that God is present in all things and actively pursuing me ALL my days…PERIOD!  Hallelujah!

Cruel Irony

It has been awhile since I shared an update on my physical status…although I’m still recovering from the heightened activity of February and counting on regaining some energy, I’ve definitely experienced the gradual progression of this disease’s symptoms in general the past couple of months.  The greatest difference is in my arm strength.  I’m dropping things more consistently and my upper arms have found their resting place on my torso as if my upper body were wedged in a barrel.  I need assistance, for example, lifting up my arms to put on deodorant.  I can still write and type but my fingers are definitely beginning to stiffen.  It’s disheartening, for sure.  I’m beginning to recognize a pattern in my process of this disease…just like with the loss of function in my legs where my symptoms first surfaced, I started with feeling annoyed by my lack of arm strength and then concerned over the practical implications and now I’m starting to feel the emotional impact.  Once again, expectations need to be adjusted and transitions made.  Ugh.

My hospice counselor asked me last month if I was experiencing any anger and it got me thinking about my full circle relationship with anger.  Although anger hasn’t surfaced yet for me in my ALS journey, I remember struggling with anger in particular as a young mom when demands were high and Rolf traveled a ton for his job.  It must have been something I was concerned about at the time because I came across a stack of index cards recently that I compiled with every bible verse on anger that I could find.  😉  I remember reciting those verses over and over, doing the hard work of growing and praying that God would lift my anger.  Not that anger is all bad or isn’t an appropriate emotion at times but I was in need of a big perspective change at that time in my life and my prayers were thankfully answered.   Perspective is key, I think, and Rudy taught us a great deal in that department.  For whatever reason, Rolf and I never asked “Why us?” when it came to life with Rudy…instead we honestly approached it with the perspective “Why not us?” and it seems to be the same with my ALS.  Don’t get me wrong, I have a lot of questions for God but “Why me?” isn’t one of them and anger isn’t my go-to emotion right now.  What I do battle, however, is deep, deep disappointment…and it is, at times, crushing.

I’ve mentioned my disappointment before as it relates to the children and grieving future life with them and their families but lately my disappointment has been centered on the life Rolf and I are so close to sharing.  I turned 53 last week and with Olivia nearing the end of her junior year, Rolf and I are nearing a new season.  The cruel irony is that my life is ending just as we “successfully” launch our youngest.  Ironic because back when the demands of raising a young family were high and finances were low, I dreamt about life with less stress and a little disposable income…I knew all our hard work was going to pay off one day in a season with room to breathe and time to rediscover each other.  Oh, I know, the empty nest years can have their own difficult adjustments and stresses but Rolf and I seem poised to start that transition strong and I’m devastated we aren’t going to be able to test it…and, more importantly, share it.

It’s a vulnerable time…my growing physical limitations are making me feel more and more vulnerable and there is a lot going on in general leaving us all feeling a little raw and fragile.  Will you please pray for strength of heart and mind?  My hyper awareness of mortality and loss and suffering today seems appropriate for the start of Lent, I guess.

My brother sent me this Lenten prayer yesterday and it certainly is a thoughtful meditation as we prepare our hearts to commemorate the death and resurrection of Christ and it seems particularly applicable to me today.

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Olivia’s latest artwork…a precious gift for my bday…quoting one of our favorite Abba songs in Mama Mia 2.

Bless you friends!  Thank you for your love and prayers!!

 

 

An Epic Reunion

Hold on to your hats, folks, this is going to be a LONG post.  If ever there was an event difficult to capture in words, it would be the reunion I enjoyed this past weekend.  I spent a gap year in college touring with Up With People and my amazing cast gathered in Santa Barbara over the long President’s Day weekend for our nearly 33 year reunion!

For the unfortunate ones out there who have never experienced an encounter with Up With People, here’s a little background…

What would become known as UWP began in the mid-sixties through regional “Sing Out” performances linked to the Moral Re-armament movement (MRA).  By 1968, J. Blanton Belk took leadership and separated from the MRA to create a non-profit, cross-cultural educational organization for the purpose of inspiring young people to make a difference in the world and build bridges of communication between people of all nations through music and community service.  By the time I began my year in 1986, UWP had grown in popularity with 5 casts of 120 students each criss-crossing the world every year performing anywhere from venues in rural communities to high profile appearances like the Super Bowl Halftime!

My cast was made up of 120+ students and staff who came from 35 U.S. States, Sweden, Norway, Denmark, Finland, Mexico, Panama, Canada, Thailand, Japan, South Korea, Poland, Ireland, France, Italy, Switzerland, what was West Germany at the time, Holland, Belgium and Bermuda! (Did I leave anyone out?  That’s me on the top row about a third of the way in from the left)

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Some of the highlights for my cast included performing on TV at the World Cycling Championships, touring the Olympic Village in Colorado Springs, performing special corporate shows in Las Vegas, San Diego and Phoenix, participating in the Muscular Dystrophy Telethon in Canada with Shari Lewis (you know, the Lamb Chop lady) and Pat & Debby Boone, performing for the first lady (Nancy Reagan) and touring the White House, working at the Special Olympics in Connecticut, a meet and greet with singer Natalie Cole and the hundreds of school assemblies and classroom visits we had with children all over the world! 😉

I pulled out my UWP photo albums and memorabilia in preparation for the reunion and discovered this forgotten letter I wrote to my supporters when I returned from my tour.  It’s kind of interesting to listen to my 21 year old self try to communicate the impact the experience had on me…

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Fast forward 32 1/2 years…

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Longtime Rudy’s Beat readers will remember my accounts of our 25th Anniversary in 2011 and our 30th in 2016.

This time around we had over 50 (!) cast mates, a couple of spouses and a handful of the next generation descend upon our small town to “Raise A Ruckus” (*show tune reference) for 4 days in chilly, breezy Santa Barbara.

The weekend began with a group headed to Costco to stock up on food and beverages…5 carts and $1500 later…   IMG_2547

Shortly after this picture was taken, I got a text from a friend of mine who works at Costco that read “I just saw a bunch of people who love you so much at Costco!”.  Ha Ha  I am NOT surprised that random small world connection was made.  “Up, up with people.  You meet ’em wherever you go.” (*another show tune reference)

The excitement for me built to a fever pitch on Friday as I anticipated seeing everyone that night AND having the boys home for a couple of days!!!!  YAY!!!

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The MOHD Squad was thrilled to have the boys home to share in this special weekend!!!

I heard from several people prior to the reunion that they were nervous about coming…for some it was rooted in the insecurities that come with not having seen this group in so long, for many it was anxiety about seeing me.  I totally get it and prayed that any fear or concern people were bringing with them would be wiped away completely once we were together and that is CERTAINLY what happened…

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IMG_2630Saturday was another full day of hanging out.  The cast assembled mid-afternoon for a circle time centered on ME and extending love and support to my family.  Much to my surprise “TrishFest 2019” was unveiled in full!!  Ha Ha  Although it was very surreal and most humbling to have a significant amount of time focused on me, I felt the enormous love and embraced it all with much gratitude.

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Some of the “TrishFest” swag!

 

 

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We dusted off the old songbook and serenaded each other with our show’s inspiring final anthem…(the kids brought their instruments and jumped in to accompany us with no run through!  I LOVE that!!!)

Oh, and just in case you think the singing ended there…think again!

(Thank you Charlene, Deanna and ALL for putting yourselves out there…these videos definitely capture the thoughtful and fun spirit of this group)

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A visual reminder of all the love!!

The party continued well into the night with entertainment provided by Wilson, Max, J.D., our family friend Jeremy and a handful of others on shaker eggs and tambourines! 🙂

Coast Community Church nearly doubled in size on Sunday morning with the inclusion of the visiting Uppies!  How precious is was for our family to share our church community with our out of town friends and vice versa…it was a magical morning of worship and friendship!

The fun continued throughout the day on Sunday and we all enjoyed dinner prepared by this capable crew:

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Thanks kids!

Honestly, the greatest joy for me throughout the weekend was sitting back and watching small groups gather all over the house and backyard at any given time literally soaking each other up…there was so much catching up to do and laughter to be shared!  Everyone really took advantage of every second!

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Catching up with the offspring!

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The two drummers in my life!

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IMG_2642I was sharing all about the reunion with a friend and she stopped me mid-sentence and pointed out that I used the word “freedom” several times in my description of the weekend and how poignant it is that I’d feel so free while being so restricted physically.  I love that observation.  It’s so true!  Without the typical distractions of daily living, I have the freedom to truly live in. the. moment. FULLY and boy, I sure did that all weekend.  I also experienced a refreshing freedom to speak bold words of encouragement into the lives of my friends.  Not that I haven’t said encouraging things in the past but it hit me this weekend how many thousands of opportunities I missed out on in my lifetime to speak into the lives of others because I was shy or didn’t want to intrude on a person’s personal life or was too busy to sit and really observe what was going on around me.  There were no such obstacles this weekend and it was a rich, rich time for me emotionally.  In the same way, I felt the freedom to communicate my love but it didn’t feel sad like “this is the last time I’m gonna get to say it so I’ll say it” kind of thing…just a real genuine, “grab your face and look you in the eye” kind of thing.  Of course, this is an easy crowd to encourage and love but there is a precious shift in perspective, nonetheless, when you live your emotional life knowing you have absolutely nothing to lose.

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I LOVE that this moment was captured. 😉

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Cast C ’86-’87 (in part)

So now what?  I kind of feel like 21 year old Trish after the tour ended not knowing where to go from here…my heart is so full, my body is so tired, I’m sad to see all the social media posts of everyone headed home and I so wish I could go to our 35th in Scottsdale, AZ!  Who knows, maybe I will be able to.  😉

I asked Rolf what his take away was from the weekend and he said it was good for he and the kids to see me loved so well and how touched he is by the extravagance of Cast C!  So sweet.

Well Cast C, you heard from the big guy himself!  You are a loving and an extravagant group and we thank you for lavishing all that goodness on us!  As I said in our circle time, the circumstances suck and I would give anything for things to be different but I am tremendously grateful for the time and presence of mind to be able to say “I love you and I’m so grateful for the remarkable history we share”.

P.S. I was so busy “living in the moment” I didn’t take any pictures this weekend so thank you all for the pictures and videos you shared with me…I give you photo and video credit! 😉

Love and MORE love, Trish