Bracing Ourselves

Halloween is just a few days away.  The official start of the holiday season – my favorite time of year (Remember? “Happy Hallowthanksmas”!!).  It’s going to be a difficult season and I’m trying to brace myself.  If Rudy’s absence could feel any more acute, it’ll be in the next couple of months.  This month has already felt empty without the thought and planning we typically put into Halloween and Rudy’s costume…especially in recent years.  I’m missing the fun and creativity Rudy inspired this time of year.  I am missing Rudy.

Halloween 006
Halloween 007
Image 19
halloween 1
Rudy and his pit crew
2014 with Nurse Sara
2016  Superhero siblings

I don’t want to sit around and be depressed all season and if all we were trying to manage is the loss of Rudy, I’m pretty confident I’d be motivated to redirect on some levels and give back in creative ways in Rudy’s memory but we’re trying to manage so much more and my heart isn’t in any of it…yet.  I’m praying for holiday inspiration and joy.

Speaking of management, I had an appointment with my local neurologist on Wednesday (also the 3 month mensiversary of Rudy’s passing).  Like us, he is surprised by the long delay for my 2nd opinion and feels we shouldn’t wait any longer to begin disease management.  He is referring me to a pulmonologist for tests to gather baseline lung function data which will be helpful in the future.  He is also prescribing another drug (Radicava) that will take some time to get approved by insurance and wants to get the process started now.  It’s a drug that is administered intravenously (daily for two weeks, off  two weeks, etc).   Of course, if the diagnosis changes as a result of the 2nd opinion, we’ll cancel the plans in motion and redirect but I don’t think we’re going to see a change in my diagnosis…my symptoms are getting worse.  Rolf and I are beginning to explore local support resources specific to ALS and I’ve applied for a clinical stem cell study at UCIrvine (a long shot worth exploring).  Wednesday was hard.  I’m working on seizing today and not becoming overwhelmed by the heartbreak that blankets our holiday season this year or the heartbreak that seems to be blanketing everything right now.  I guess we’re bracing ourselves for more than just the holidays.

My appointment with UCLA is set for November 9th.  Had there been a cancellation allowing me to go sooner, it would have happened yesterday so November 9th it is!  Cedars got back to us with an appointment date on November 8th.  Since the timing of both appointments is essentially the same, we’ve decided not to go Cedars and just stick with UCLA.  It definitely feels like we’ve spent the past 5 weeks spinning our wheels but I’m still trusting in the timing of it all and eager to see where the next couple of weeks will lead.  Thank you for your continued prayers dear friends!

Rudy’s Picasso Pumpkin

12 thoughts on “Bracing Ourselves

  1. Dearest Trish,
    Words fail me. I wish we lived closer. I am sending hugs and prayers to you and your family. Please know I pray for you and cherish our friendship. May God bless and comfort you. ♡

  2. I love this post, my favorite photos, my favorite people.

    I am praying for a miracle of healing for you Trish and a feeling of peace and comfort when you look at these photos and reminisce about sweet Rudy boy. xo
    When you feel life is falling apart, God will carry you through.

  3. Precious Trish! My prayer for you today…Lord, you hear our cries! Please bring comfort and peace as as only your Holy Spirit can give. Wrap your arms around Trish, Rolf and their precious children as they push forward. Guide and direct every step, decision and move they make. We ask this in the powerful mighty name of Jesus Christ!

    I love you my sweet friend. 💋

  4. I continue my prayers for you and your family. Please let me know if I can help with anything on November 9. Even if it’s just to have someone there with you at the clinic… I’m here.

  5. Precious precious pictures!!! I think I’ll show them to my class on Tuesday! It’s hard to grasp that someone so full of life in no longer with you guys….but Elsewhere Beautiful. I can’t imagine the continual flood of memories!!! Such a goofball. Such a lover! Hugs and prayers for you all!

  6. Dear Trish,
    Thank you for continuing to share your heart with us. Praying for you all daily!
    We love the Rudy photos!!!❤️🎃

  7. Please know that you all are on our hearts. Praying for His peace and joy to overflow. Thank you for always being honest. He used you in this post today for my own life. Much Love.

  8. My sweet daughter, my fervent prayer is for a miracle that this nightmare will be eliminated and your health return!

    I love you so much!

    Forever love! Mama

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