PTS…D?

Thank you for your prayers. My g-tube placement last Thursday went smoothly…Rolf and I arrived at the hospital at 10am and were out by 2pm. Unfortunately, my recovery at home was stressful due to a combination of me feeling particularly vulnerable & paranoid, the unexpected (last minute) demand on the whole family to care for me and emotional exhaustion in general. I can’t say I’m experiencing PTSD, per se, but I’m definitely feeling a certain level of post-traumatic stress in this most recent lifestyle change because we are not just adding to my daily care regimen but reinstating a well-worn routine that comes with a flood of memories of our boy. I’ve just been so sad and weepy and impatient and _________ (you name it, I’m probably feeling it). I’m praying all this emotion is just part of the adjustment process and won’t linger too long because it’s heavy and exhausting.

In addition, I’m praying the supplemental nutrition I’m able to get through the g-tube will make me feel healthier and stronger physically. I can still eat by mouth but I’m limited to soft foods (‘been eating lots of pasta and mashed potatoes lately!) and I usually stop eating not because I’m full but because I’m tired. I certainly haven’t had a full or balanced diet lately so there is lots of room for improvement! Hopefully we’ll see a notable difference.

As the struggle intensifies, you need to know that the encouragement that comes our way through your messages & gifts and special memory-making moments becomes sweeter, for sure. Thank you all for the encouragement and your ongoing prayer. It indeed uplifts and sustains! 🙂

One last honor for Olivia…League MVP!
A great night of music with family and friends on Saturday at Kyle’s Kitchen…so good! Keep an eye out for the boys’ next gig!

Brand new shovels and smokin’ stogies in honor of a great dad. Happy Father’s Day Rolf!

Surprise!

I rolled out of a meeting at the Rescue Mission at 5pm this afternoon to the news that my g-tube (feeding tube) placement surgery is happening tomorrow (Thursday) at 11am! Surprise! Although Rolf and I talked with the neurologist recently about it being time to schedule a GI consult to discuss the plan for a g-tube, I guess our call to 911 last Friday was reason enough for Dr. D to expedite the process…catching us off guard a bit. This is a routine, out-patient procedure usually done in the GI office. The only reason they scheduled mine at the hospital is because I have ALS…I should be home by mid-afternoon. I’m not nervous about the procedure (‘been through this before with Rudy) but I would appreciate your prayers for the recovery. It’s hard enough for me to find comfortable positions in bed or my chair on a normal day, I can’t imagine adding wound care and pain management to the equation.

I don’t want to overdramatize the situation but I sure hope this move improves my quality of life and doesn’t diminish it. I’m going into this not knowing how I feel about it and I’m weepy. I feel like we just unloaded all of Rudy’s enteral supplies and the thought of resuming regular supply shipments from crApria discourages me more than the fact that I need a feeding tube. I know too much and have too much history in this arena to see this as anything but a major setback…I hope I’m proven wrong but tonight I’m uncharacteristically pessimistic and wonder if all the effort will even be worth it…but then again I want to see my baby girl graduate from high school so…! Prayer PLEASE!!

I’ll be off the grid for a few days and I’m already behind in responding to texts and emails this week so if you don’t hear from me (especially regarding requests to visit), please be persistent and try again. 🙂 Thank you dear ones.

DIYers

God is very good to me. Life may be kicking my butt but God is good and I have a remarkable story that illustrates this beautifully:

CHAPTER 1

A good friend of mine from our former church in L.A. invited me to a prayer and worship service last Thursday night. To be honest, I didn’t want to go. As much as I love this dear community of friends, I just wasn’t sure I had the emotional energy to see them…many of whom I haven’t seen since my decline. So, I sat on the invitation for a few days and in that time published my last post. As I composed & edited the post and put the struggle into words, I decided I really should take advantage of Pammy’s invitation regardless of my reservations because I knew the experience would help calibrate my perspective and bring healing. In addition, the kids were willing to drive me down which sweetened the pot even more! 😉

Olivia was 4, Max 8 and Wilson 10 when we moved from L.A. to Santa Barbara so it was a little freaky for the boys to be back at Christian Assembly – they remembered everything being much bigger back in the day. Ha! Although we’ve been gone for twelve years, it only took one step past the threshold of the church before I began to run into friends…by the time we got settled in the sanctuary, our posse numbered 12+. The 7 years we attended CA were formative for our young family. I was part of a small mom’s prayer group that was very special and I became deeply invested in the spiritual nurturing of all our little ones. Now these kids are grown and many of them were present Thursday night praying fervently for ME…how precious is THAT!

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THEN…
…and… (apparently I never brushed Olivia’s hair)
…NOW!

The highlight of the evening for me came after an organized time of prayer for spiritual, emotional and physical healing…a large group gathered around me including Wilson, Max and Olivia. As I looked down at my kids praying, I was overcome with a strong sense that they should be prayed over but I was sobbing and couldn’t do it so I motioned to my friends Pam, Robin and Kathy to pray for them. I just sat there and sobbed and, quite unexpectedly, felt led to pray prayers of anointing over the kids myself even though I couldn’t articulate the words. I motioned to Kathy to help me place my hand on Olivia’s head and then the boys’ and through my tears I prayed the prayers of my heart that came out as unintelligible sounds and groans. I wish my description could do the experience justice…it was such a precious, “full circle” picture of community, friendship and love. God met me in that moment and reassured me that He has my children in the palm of His hands. Something my heart needed to be reassured of, I guess.

My prayers? Well, for Olivia, I prayed that her heart will be protected. She has been and will continue to be on the front lines of my struggle and I pray her faith fuels her strength. For Max, I prayed he will be sensitive to and empowered by God’s spirit as he grows in his gift to lead others (in worship especially) but also in life in general. And for Wilson, I prayed he will be a bold beacon of God’s grace and truth and JOY in the many contexts he will find himself in this transitional season from youth group leader to military officer. For all three, I prayed that the tough stuff will not leave emotional scars but will deepen and inform their compassion.

As for me, God used the evening to remind me to trust my instincts. I am in a frightening and frustrating process as expressed in my last post. It is easy to feel lost in the increasingly unfamiliar space I find myself in and (although I appreciate the professional resources available to me) my best defense against losing myself in the chaos is listening to and trusting my gut…an important insight for both me and Rolf because we are DIYers at heart, always have been, from Rolf’s building projects to the way I managed our home to the way we problem-solved Rudy’s care and now mine. It was as if God was saying to me on Thursday “Don’t worry. You’ve got this. I’m guiding and you’re listening and you have a team of wonderful people following your lead. Trust yourself. All shall be well.”

So, whenever I think I’m hearing from God I look for confirmation and then this happened the following morning:

Chapter 2

The kids and I rolled in at 1am on our return from L.A. As a result, I was out of sync in my normal routine and extra tired the following morning…about 3 bites into my breakfast I began to choke. The boys jumped into gear and began our family’s choking protocol but this time it didn’t work and the blockage was not budging. Trying not to panic, I motioned to Max to pound on my back harder. The food shifted and my airway opened up but it was still lodged in my throat. It was really painful and I was unable to swallow my saliva. After a few attempts at trying other techniques with no luck, I told Wilson to call 911 figuring they’d have some quick and easy remedy. Three first responders arrived, assessed the situation and advised I be transported to the ER. I really didn’t want to go nor did I feel like the situation warranted an ambulance transport…if only we could get a good whack at just the right angle…I asked one of the first responders to try…he did so, lightly, but expressed concern over hurting me or making it worse. Understandable, but while Wilson answered the others’ questions regarding my general information, I turned to Max and asked him to give it another try…2 or 3 strong strikes later and I was free!! I leaned back with a deep breath and big smile just as the ambulance and EMTs arrived. Woo Hoo!!!! They checked my vital signs and left pretty quick after that.

Like I said to the boys afterwards, it was good that we called for help and had back up but ultimately we followed instinct, figured it out and got ‘er done! Yay us! Where was Olivia? Out on a long run. There will be future episodes for which she will be needed but this time God gave her a break and guarded her heart. Praise Him!

So, has all this translated into less frustration in the living out of the day to day? No. But, it is helping me connect the dots and not feel so lost…as have all your thoughtful comments and messages this past week. Thank you, friends! I welcome your insights and words of love always.

FUUUUUUUUUCK

I apologize! This is an awful word and I don’t use it flippantly but ALS is an awful disease and sometimes it’s the only expression that satisfies. Ironically, it’s the only word I can still enunciate perfectly so there is twisted personal value for me in using it as well. 😉

Friends, I am in the midst of the toughest adjustment to date in the progression of this disease and it’s a hard hurdle to clear…I’ve lost practical use of my arms. I feel like I’m wearing cement sleeves and I can’t lift them anymore, my fingers are beginning to curl and I am no longer able to grip. As a result, my level of independence has plummeted and my level of frustration is skyrocketing.

I’ll spare you my long list of “things that frustrate” but the discouraging reality of losing my arm use is the seemingly endless domino effect of other issues that now need to be addressed…i.e. the threat of pressure sores and other skin issues because I can no longer adjust my position on my own or dehydration because I can’t lift a cup to drink so I’m not drinking as much throughout the day which leads to constipation, etc., etc., blah, blah, blah. I saw my neurologist Monday and we added 4 new medications to my daily regimen to combat all the emerging issues (note – I can barely swallow the 2 meds I’m currently taking). I’ve definitely been in a consistent progression for the past year and a half but there is a convergence of critical symptoms happening right now that is all consuming…and chipping away at my quality of life. It’s time to make a trip to the GI to discuss a feeding tube; I have a breathing machine I’m supposed to wear 8 hours a day and can only tolerate 2 1/2; and pretty much everything requires more energy than I have. To top it all off, I can no longer eat my favorite comfort foods and retail therapy has lost its allure. (Insert blog title here!!!!) There just isn’t a whole lot in a typical day for me that is light hearted and easy.

I don’t share all this to be pitied but to show the crazy extremes because in God’s precious mercy, there has also been a convergence of encouragement from many sources lately that I’m holding onto tightly as lifelines…

  • For example, a friend from Boston sent me this song that speaks to my heartache: Click here
  • My 90+ year old friend emailed me a copy of a devotional she’s reading and this excerpt resonated with the singer in me:

“Your Father is training you for a part the angels cannot sing, and His conservatory is the school of sorrows. Others have said that He sends sorrow to test you, yet this is not the case. He sends* sorrow to educate you, thereby providing you with the proper training for His heavenly choir. (*Personal note: I take issue with “sends”. I prefer “uses”.)

In the darkest night He is composing your song. In the valley He is tuning your voice. In the storm clouds He is deepening your range. In the rain showers He is sweetening your melody. In the cold He is giving your notes expression. And as you pass at times from hope to fear. He is perfecting the message of your lyrics.

Oh dear soul, do not despise your school of sorrow. It is bestowing on you a unique part in the heavenly song. ” -George Matheson

  • Rolf forwarded me Richard Rohr’s daily meditation about my favorite – Julian of Norwich! Yay:
Amen! Amen!
  • …and so much more. Thank you all. God is using you.

Please pray for a quick adjustment to new systems of living, for emotional strength and physical contentedness in my long, motionless days and fitful nights. ‘Grateful for you!!!

Rudy’s courtyard is coming along. Rolf and the kids spent most of Saturday replanting and refurbishing the planter…it turned out great. All we need is a hummingbird feeder in the tree to finish is off, I think. A big thank you to those of you who have sent in a gift!! What a sweet encouragement to our whole family. ‘Grateful for you!!!

Thank you friends.

Putting the FUN in Funeral!

I’ve had the details of my funeral mapped out for awhile but I met with my pastor and Rolf and Wilson last week to discuss it all while I can still talk. It hasn’t been an easy task…knowing how much to do by myself (which isn’t fun) and when to consult my family (who would rather not discuss it). Pastor James described it well…my death is something the family doesn’t want to think about and something I think about all the time. So true. I dreaded calling this meeting together but I also knew it would give me peace of mind to leave a plan in place and hopefully make it easier on everyone when the time comes. One could argue that this is something we should all be doing anyway and it is but, let me tell you, it would be a whole lot easier to stomach if the felt need wasn’t so imminent.

As you can imagine, there were tears at this meeting but, as is the Geyling gift, there were also a number of straight up jokes at my expense that made me laugh big belly laughs too. 🙂 I’m a woman of tradition & order and my choices reflect that but I also value community and creativity so that is evident too. And, of course, no Trish-organized-event would be complete without a party favor (already ordered and received!). Hopefully the details won’t reveal themselves for a very long time but when the time does come, I want my family and friends to carve out a space to grieve and embrace whatever unfolds while making room for big belly laughs too.

FYI, speaking of death and the need for funeral plans, today is the 25th and I miss my boy.

2nd Lieutenant Geyling

Our attention toward and various celebrations of Wilson in recent weeks culminated at his commissioning into the US Army as a 2nd Lieutenant Infantry Officer on Saturday.  It was beautiful, sobering, full of hope & promise and overwhelming all at the same time…7b1a8251

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“Wilson Geyling is from Goleta, California. He is graduating with a Bachelors of Arts in History and Humanities. He is branching Active Duty Infantry. He is being pinned by his parents, Rolf and Trish Geyling, his siblings, Max and Olivia Geyling, and, in spirit, by his youngest brother, Rudy Geyling, who sure would have been happy to be here today. May he rest in peace. CPL(R) Joe Zombrano, U.S. Marine Corps will now render 2LT Geyling his first salute.”

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Our family had the honor of presenting Wilson with his bars.
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Olivia’s godfather and Marine veteran Joe Zambrano flew in from FL to give Wilson his first salute.

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‘So grateful to many of our friends and family for being a part of this special milestone
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Longtime friends Ryne and Miranda from youth group days surprised Wilson – so sweet
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Some circle time fun and sharing

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Words of affirmation from Uncle Steve
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‘Grateful Gma Jo and Oma could join us too

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The following day, the veterans in our church prayed over Wilson.  It was rich and sacred.

 

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Will you join us in their prayer?

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As if we hadn’t packed in enough goodness for one weekend, we tacked on a performance of Les Miserables at the Pantages in Hollywood.  I’m so glad we got to see this together as a family…it’s one of my favorite productions.

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I remember when I first saw Les Mis, I was deeply moved by the theme of redemption and love throughout the whole story but this time around, as I watched young Marius and his peers battle for freedom and reform, I cried the tears of a mother of a young soldier and sobbed at Jean Valjean’s prayer…

Click here to take a listen…

 
God on high
Hear my prayer
In my need
You have always been there
 
He is young
He’s afraid
Let him rest
Heaven blessed.
Bring him home
Bring him home
Bring him home.
 
He’s like the son I might have known
If God had granted me a son.
The summers die
One by one
How soon they fly
On and on
And I am old
And will be gone.
 
Bring him peace
Bring him joy
He is young
He is only a boy
 
You can take
You can give
Let him be
Let him live
If I die, let me die
Let him live
Bring him home
Bring him home
Bring him home.
(Songwriters: Alain Boublil / Alain Albert Boublil / Claude Michel Schonberg / Herbert Kretzmer)

Oh! So moving!  Almost too much for this tender heart of mine.

Here’s another link to the whole 10th anniversary concert performance online…by far my favorite cast.

Sandwiched in between all that was Rolf’s birthday…it seems fitting he spent his birthday investing in his family.  I’m most grateful for the thousands of ways he invests in the children and influences their lives…critical thinking and humor are at the top of a very long list of attributes he is passing down.  Happy Birthday Rolfi!

Audio of prayer at church

A Sweet Tribute to Our Boy

My heart is deeply touched by Rolf’s dear colleagues who launched a precious tribute today for our little boy!  (I know, that’s a lot of descriptive verbiage but I’m excited.)

It is such an honor, I wanted to share it with you…

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Naming rights are typically reserved for $100,000+ pledges.  What a generous gesture for our Rudy.  Oh, how he loved the time he spent at the rescue mission…especially the courtyard.  We have asked you to participate in fundraisers for organizations like the American Heart Association and Camp del Corazon in Rudy’s honor over the years and our collective effort has raised over $60,000 for kids living with heart defects!!  Amazing. We have one more opportunity to honor Rudy benefitting others in crisis.  No obligation but if you feel moved to be a part of this tribute, you can click the link below OR print out the pledge card photo, fill it out and send it to 535 E. Yanonali St., SB, CA 93103!  🙂

Click here to donate

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Playing hide ‘n seek in the courtyard.

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Playing with trucks in the courtyard.

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Playing by  his own rules.

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Keep your eyes out for photos of the renovated facility and new Rudy courtyard next month!!   So special!  Thank you.