Where Are You Christmas?

I just heard Faith Hill’s “Where Are You Christmas?” on the radio.  I’m not sure I ever really listened to the words of that song before…what a beautiful song.  I think I just adopted it as my theme song this holiday season…”My world is changing.  I’m rearranging.”  Yep, that kind of sums up where my heart is today.  But how ALS and Rudy’s absence is changing this Christmas and our family’s world in general is only magnified by what has been going on in our community for the past 12 days.

The Thomas Fire that broke out in Ventura County a week ago last Monday made it’s way to Santa Barbara County on Sunday and is snaking it’s way up through the south county communities of Carpenteria, Summerland and now Montecito.  We aren’t in any fire danger here in Goleta but Santa Barbara and Goleta have been blanketed with smoke and ash since the fire broke out which has severely impacted our community’s day to day.  Our local schools closed last Thursday and won’t reopen until after New Years, many businesses have shortened their work days significantly (if not closed all together) and we’re all donning attractive face masks when out and about.  It has been heartbreaking to see many we know affected by this massive fire (currently the 4th largest wild fire in CA history) and it will continue as containment is not expected before January 7th!

So far, the festive holiday events we typically participate in have all been cancelled or postponed…certainly adding to the question “Where are you Christmas?”.  It isn’t feeling particularly festive or Christmasy around here.  We were doing a great job making the most of the situation the first few days…Olivia had some friends over to bake Christmas cookies, we’ve watched a crazy number of Christmas movies and got creative with some crafts but the negative impact is starting to surface.  There is just so much to be depressed about and peppy, positive Patsy is fading.  Thankfully the house is filling up as Max arrived home on Wednesday, Wilson comes home later today and Aunt Andi flies in from the east coast this afternoon for a quick visit!!  That’ll switch things up and lighten the load considerably!  It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us is…always.

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Don we now our gay apparel.
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We woke up Sunday morning to a dusting of what looked like snow…but it was ash.
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Olivia and I decided to head south to escape the poor air quality for a few hours and do some Christmas shopping. We went from this…
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…to this in little over an hour!
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I’m horrible at taking fire pictures but we passed by the fire line on the ridge over Summerland on our way home later that day.  The fire fighters are doing an AMAZING job keeping the line contained to the ridge…so impressive and inspiring.
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Olivia and some friends headed down to the fair grounds to help with the animals that had to be evacuated from nearby ranches and the girls were given the fun job of comforting the animals! I’m not sure who enjoyed it more. 😉
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‘Went to Kyle’s Kitchen for some comfort food and found that Rudy continues to be “present” spreading his trademark Christmas cheer! Thank you Ferro Family for including Rudy in your decorating fun.

I’m particularly thankful, now, that the MOHD Squad got to go down to San Diego the weekend before the fire broke out to see Max perform in his PLNU concert choir Christmas show.  The variety of numbers performed made the show fun, festive and quite moving…it was the perfect way to kick off THIS Christmas especially.  I captured their rendition of my favorite carol…

Merry, Merry, MERRY Christmas dear ones.  May these last few days leading up to Christmas be filled with GREAT JOY, SUSTAINING GRACE, PERFECT PEACE and a STRENGTH of spirit and of mind that is truly beyond what the natural world can muster!  Thank you for your friendship and love.

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Kinda feels like this bears repeating…”It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us isalways.”

Giving Thanks

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There is laughter in the house this weekend…throw your head back, belly laughter.  It has been a long three months since the boys left for school and it is good to have them home.  It is good to have the house filled with sound and activity.

The long holiday weekend will fly by and we wasted no time jumping into the holiday traditions we hold so dear and establishing some new ones.  We were blessed to help host the Rescue Mission Thanksgiving Feast on Wednesday…the kids entertained the guests, I helped greet and Rolf worked the room connecting with guests, staff, volunteers and the media.  Rudy’s favorite camerawoman from our local ABC affiliate was there.  We had a quick exchange in the parking lot when we arrived and I couldn’t help but think how happy Rudy would have been to be in the center of it all.  There were a handful of homeless guests who arrived and asked how Rudy was doing.  It was difficult to share the news of his passing but it was very special to witness the impact he had on so many.  The celebrations at the rescue mission just won’t be the same without him…come to think of it, he took after Rolf in his ability to work the room and connect with everyone spreading smiles and joy…while being a bit mischievous too.

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Thanks for the pictures Dale!

After the feast, we ran home, picked up Harley and headed to the cemetery for a small gathering to honor and remember our boy.  We wrote down and shared favorite memories, brought toys to donate to Toys for Tots and stayed until the cemetery closed for the night.  😉  We finished the day with a pizza (Rudy’s favorite) and pasta dinner in his honor.

There’s lots for which to be thankful.

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And that brings us to today…Thanksgiving.  We will enjoy celebrating with friends later but our day is going to be pretty simple.  It is difficult to describe where my heart is today.  I did a lot of observing yesterday…I watched my family exercise their gifts and talents, joyfully interact with friends and volunteers at the rescue mission and embrace good friends at the cemetery and I ended the day knowing (and being grateful) that the awesomeness of my family and their love for God gives me great hope and confidence for my family’s future…but it’s also the core of my heartbreak as I engage in disease management, face the long, scary road ahead and lament all the awesomeness I’m potentially losing.  I’m optimistic but I’m also realistic and when my week is filled with meetings with my hospice case worker, my new ALSA case manager,  initial taping for a legacy video, lots of calls on Rolf’s part to coordinate local medical care, etc, etc, etc, it’s hard not to face our reality.  Rolf and I are beginning to tap into local resources for which I am so very grateful but at the same time cause me heartbreak.  I am amazed at the human spirit’s capacity to feel…and not just it’s capacity to feel individual emotions but it’s capacity to feel it all at the same time.  Every burst of laughter includes a a wave of tears.  They are inseparable for me right now.  It’s complicated…every day is complicated.  The goal today is to keep it simple, enjoy the simplicity of being together and give thanks for the many rays of light forcing their way through the dark shadows.  We are blessed and there is much for which to be thankful…it’s just taking a lot of mental energy to focus on that part of our reality today.  Thank you for your continued prayers and messages of encouragement today!  We aren’t able to respond to them all but we read and are blessed by every one.  Thank you!!!

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Rudy and I supplied Dr. Harake’s office with “Heart Hero Bears” to give to new patients over the past few years. In the midst of all the other appointments in this week’s schedule, I pulled out our remaining stash of bears and dropped them off on Tuesday one last time.  It felt good knowing Rudy’s legacy will live on in a few more young lives touched by heart disease in the near future.
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Happy Thanksgiving dear ones. If you see a hummingbird today, consider it a hug from Rudy!

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May your Thanksgiving be filled with fun celebration and joyful reflection on all that is good.  Happy Thanksgiving!

Not All Doom And Gloom

Although the crushing weight of life is pretty constant right now, it isn’t all doom and gloom around here.  We’ve had some sweet “full of life” moments sprinkled throughout the heaviness of the past couple of weeks.

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My sweet friends, sisters Tiffany and Kandee, treated Olivia and me to a hair and makeup makeover! Here’s our before…

 

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…and our after! Ha ha
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Kandee Johnson’s Dream Team!! Check her out on instagram @kandeejohnson and you tube.
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MOHD Squad fun
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Rolf and I celebrated our 25th Anniversary where our relationship officially began…the Pantages Theater in Los Angeles. We saw “Phantom of the Opera” 26 years ago on our first date and “Hamilton” this time around. 🙂
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Olivia got all dolled up for Homecoming…
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…and had a fun time!
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We were blessed to host the SBRM graduates to dinner last week before the graduation celebration on Saturday! We are in awe and oh so proud of the 13 men and women who completed the year long recovery program!

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A precious celebration (hosted by the church where we had Rudy’s funeral).
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The MOHD Squad left graduation and headed to Nashville, TN…
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…just in time to celebrate cousin Rachel’s wedding to Mr. Josh Hurt (along with cousin Emma and the rest of the Kansas Wilson clan)!
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Today was the official ribbon cutting ceremony of Rudy’s Buddy Bench at MountainView school.
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It was a sweet time with the student body, teachers and school staff.

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I got a tender hug from one of Rudy’s close friends…
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…and one of Rudy’s favorite teachers. 😉

Special celebrations and sweet tributes have filled November so far and the month is only 1/2 over.  We’re counting down the days until Wilson and Max come home for Thanksgiving.  ‘Can hardly wait!

God is Bigger than the Boogie Man

I have come to the conclusion that the “Boogie Man” is real because in the past 3 1/2 months, we’ve confronted one nightmare after another that are still so difficult to believe…i.e, the potential scenario that made the hairs on the back of my neck stand up in caring for Rudy over the years is what unfolded on the morning of July 25th.  When I googled my symptoms for the first time and ALS popped up as a possible match, I physically shivered at the thought but, of course, dismissed it as a crazy internet diagnosis.  “I can’t possibly have ALS!!”.  Well, today was my 2nd opinion appointment at UCLA and the ALS diagnosis was confirmed.

To be honest, I’m ending the day less devastated by the confirmation of the disease and more disheartened by our day as a whole.  I knew my expectations were too high going into today and tried hard to readjust those expectations in the days leading up to today’s appointment but I really wasn’t prepared for how today played out.  I have two responses…the practical and emotional.

Practically speaking, Rolf and I walked away from today with our second opinion and a clear feeling that UCLA doesn’t have much more to offer us than what is available to us locally and that is super helpful information AND important to remember.

Emotionally, however, I’m left feeling defeated and duped.  We had the expectation that today would include a clinic visit with assessments from the clinic MD, physical therapist, respiratory therapist, nutritionist, etc.  We were instructed to have Dr. C’s medical notes faxed to the clinic for the MD to review.  We were told the authorization needed to have the clinic director’s information specifically so there wouldn’t be a delay in getting the appt scheduled or restrictions in care…a request that required a couple more phone calls to the insurance company.  Bottom line, we worked hard the past 6 weeks addressing the checklist of “to dos” that ended up not having ANY impact on today at all.  Our appointment lasted less than an hour.  Although I have no problem with the doctor we did see, it wasn’t the clinic director which makes me question why we had to go to the trouble of getting a second authorization with her name on it.  The medical notes faxed from Dr. C’s office, could not be located and, therefore, were not reviewed by the clinic MD.  Confirmation of the diagnosis was determined by my answers to a questionnaire and a quick reflex & physical strength examination. I don’t doubt that is all the information the doctor needed to make his determination but I feel like we wasted our time coordinating the transfer of records that weren’t used.   I thought we’d have more detailed information and the beginnings of a game plan as a result of today.  Instead, I feel like we’re ending the day exactly where we started it and I can’t tell you how deeply disappointing that is for me.

To add insult to an already bruised spirit, I fell as I left the clinic.  (Ironic as we had just had a discussion with the doctor about the big threat and potential negative impact of me falling!)  It was an epic fall with bags flying and nothing to break the fall.  Rolf had already left to get the car and there I was on all fours with tears streaming down my face in the middle of a large hallway unable to get up.  Luckily, a maintenance employee heard the commotion, came out of a break room to inspect and hoisted me to my feet.  Needless to say, I’m pretty sore tonight and less confident on my feet in general.  😦

Before we left campus, Rolf and I made our way to the main hospital to donate a box full of toys to Child Life in Rudy’s memory.  It was difficult to be there without the boy so embedded in our UCLA memories.  It felt like a foreign place…the familiarity of UCLA that we felt would be our comfort in this next medical journey just wasn’t there anymore…making it all feel even more isolating and unknown & our boy further away.

So, what’s next?  I’m really not sure.  There are no specific follow up appts planned at UCLA for now.  We’re in the middle of open enrollment trying to figure out the best insurance plan configuration to meet our current needs.  Dr. C and the doctor we talked to today didn’t have any knowledge of or information on the stem cell clinical trial at UCIrvine so we are left to figure it out on our own.  And we will, all of it, one day at a time but not until next week because the MOHD squad has a SBRM graduation and Nashville wedding to go to this weekend!!!

I wish I could say some profound spiritual truth anchored me today in the midst of my frustration and disappointment but what did come to mind was the Veggie Tales theme song from the “God is Bigger than the Boogie Man” video my big kids watched a thousand times when they were little!

God is bigger than the Boogie Man, He’s bigger than Godzilla or the monsters on t.v.          Oh, God is bigger than the Boogie Man and He’s watching out for you and me.

Silly, I know, but it’s true.  God is bigger than our present circumstances and today’s lack of helpful information and options means there’s lots of room for God to work in His limitless power, mercy and love.  Thank you, dear ones, for the abundance of texts, emails, and prayers upon prayers throughout today!!!  Each one a reminder that we aren’t alone in this.  God is bigger and our circle is wider than we could ever imagine and we are deeply blessed by the love.  Thank you!

Rudy’s headstone was placed this week…another detail adding to our mixed bag of emotions.  The final detail in laying our boy to rest is done.  We’re pleased with how it turned out and hope it inspires some fun for those who visit him.  A fitting tribute for our boy for sure…

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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.

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Rudy and his pit crew
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2014 with Nurse Sara
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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!

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Rudy’s Picasso Pumpkin

Drawing Near To God

A big part of establishing a framework on which to manage the many moving parts of this new health journey for me is to approach it holistically from a physical, mental AND spiritual perspective.  As we wait for the medical consults to come into play, we’ve started to address the other areas as well…mental health through grief/hospice counseling and, for me, spiritual health through spiritual direction.

I met with a friend this week who is also a spiritual director…a person trained to come alongside, listen & ask questions to help guide a client in his or her reflection and spiritual growth. I mentioned before that I feel God is calling me to focus on “heart and family” during this time of waiting for the 2nd opinion and exploring the spiritual elements of the journey I’m on is foundational to that.  Because it feels like my whole being has been consumed with physical battles the past few weeks, it feels really good to spend time listening to God in a structured way with a friend.

At one point in the session, my friend asked me if I felt forgotten…I thought for a minute and told her I can honestly say “no” because even in the midst of all the layers of heartbreak, I can see God’s fingerprints.  She asked for an example and I shared this story…

When Rudy became unresponsive the morning he died and we raced him to the local hospital in Guymon, OK, I remember looking up at one point and saying out loud “Oh my god, we’re in the middle of nowhere.  What can they do for Rudy here?”.  Looking back on it, I feel bad for judging the small town because the ER team there did a great job and I recognized that even in the midst of the chaos but God chose to take it a step further…fast forward a couple of hours…after Rudy was declared dead, the hospital staff left the room and gave our family some time together alone with Rudy.  After awhile, the staff began to filter back in to offer their condolences and finalize official business.  At some point, we had a conversation with the ER doctor that went something like this:

ER Doc – “So, you folks are from Santa Barbara?”

Trish – “Yeah, well a small town just north of Santa Barbara.”

ER Doc – “Goleta?”

Trish – “YES!  How do you know Goleta?”

ER Doc – “I live in Santa Barbara”

Trish – “Wait.  You do?  Where?”

ER Doc – “Up in the hills by the Santa Barbara Bowl.”

Trish – “But if you live in Santa Barbara, what are you doing in Guymon, OK?”

ER Doc – “I fly out once a month for a week-long shift here in the ER.”

Trish – “You mean to tell me that we just happened to pull through town during the one week this month that a doctor from Santa Barbara is on duty here in Guymon, OK?

YEP!!

As we drove away from the hospital that morning, I was not only at peace with the care Rudy received but I was doubly at peace knowing that Rudy was in the care of an ER doctor that could have just as easily been serving us at Cottage Hospital had we been home when this happened!  One of many fingerprints that day. 

I had no problem identifying the many evidences of God’s presence as it relates to Rudy and our grief over losing him but it was harder for me to identify God’s fingerprints in my situation…that is, until I got into my car.

Here’s a little back story…Rolf, Olivia and I made a quick trip up to the Bay Area last weekend and I enjoyed catching up with a good friend who shared her enthusiasm for some spiritual formation study she is doing and how impactful a book about Julian of Norwich was to her.  Julian of Norwich was a British Christian philosopher and theologian who lived in the 13th and 14th centuries, was known to have suffered great pain and loss but whose primary message remained one of hope and trust in God.  My friend thought maybe I would be comforted by her story…fast forward to my spiritual direction session 3 days later…at the end of the session, my friend facilitating the hour asked if I would be interested in using Anglican Prayer Beads (much like a rosary) to help me focus in prayer (as I confess this has been difficult for me to do with all the thoughts swirling around in my head).  I told her I’d love to try it, took the packet of beads and I went on my way.  When I got home, I opened the little pamphlet that came with the prayer beads and read the recommended prayers and to my surprise, one of the four prayers was titled “Prayer of Julian of Norwich”!!!  There she was again intersecting my journey again…within just a couple of days!  You can bet I stopped and took a closer look at Julian of Norwich!  🙂  Another reminder that God is present, He knows my heart, He knows my needs and He is guiding.  IMG_0322

Julian of Norwich is best known for “Revelations of Divine Love” which she wrote in response to an encounter she had with Jesus on what was thought to be her deathbed but from which she recovered.  My friend was right.  I am encouraged by what little I know of her story so far and many of her questions for Jesus mirror my questions for Jesus.  I am particularly challenged by this quote:  “It is God’s will that we accept His promises and His comfortings as broadly and  powerfully as we can receive them and He also wills that we accept our waiting and our distress as lightly as we can take them and pay no attention to them.  For the more lightly we take them and the less value we place on them for the sake of love the less pain shall we have in experiencing them and the more favor and regard will we have because of them.” -Julian of Norwich  Hmmmmmm…

The beautiful thing about taking small steps to draw closer to God is that God meets us in those moments, takes the reins so to speak, and begins to pull us in because, I believe, He is just as eager for us to draw nearer to Him as we are eager to experience His nearness…He loves us that much and more.

And really important for me to remember today…He loves me that much and more.

I really miss posting pictures of Rudy…he provided us with endless photo opportunities.  I’m not taking as many pictures these days but here are some fun glimpses into recent goings on in the life of the Geyling family.

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Max on YouTube doing what he loves to do. Technology is cool.

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A brand new Kyle’s Kitchen location is officially open here in Goleta…across the street from Costco! We couldn’t be happier for our friends, the Ferro Family. Their hard work and commitment to the special needs community is being blessed with success! Now we have THREE locations to choose from when you come visit us. 😉

Thank you friends!

Happy Day Day to our Boy

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Today would have been Rudy’s 9th Birthday and it’s very likely we would have done something really fun after church today…something he enjoyed like bowling perhaps.  We had so much fun celebrating birthdays and we loved how Rudy would wish everybody a “Happy Day Day” on their birthdays.  I can’t tell you how much it sucks that we’re not celebrating with him.  It’s a pain that cannot be described.

Today is even harder than I anticipated.  I have been consumed with details of my own diagnosis for the past two weeks and haven’t had head space to grieve my boy.  To be honest, I feel robbed of my grieving process and today snuck up on me.  If the whole ALS thing hadn’t surfaced, I would have planned something significant to mark this day…I would have taken the time to honor him and memorialize him in a creative way.  Instead, life has been turned upside down, again, and my heart isn’t in it.  I’m not ready to face a birthday without our boy…I’m not ready to face much.

I wish I knew where to go with this…with the thousands of thoughts that are filling my mind.  I’m finding it almost impossible to harness any coherent thought.  I ping pong from feeling hopeful to devastated to peaceful to in despair in a matter of a few minutes.  I feel physically strong one second and unable to catch my breath the next.  I can be engaged in a friendly conversation with a friend at a XC meet and then suddenly feel completely overwhelmed by the blue skies and happy people around me.  My lifeboat is taking on water and I’m too weary to care.

I’m feeling pretty powerless today.  The insurance authorization process has been a slow one so we don’t have the 2nd opinion appointment on the calendar yet.  We did get word on Friday that authorization approval was finally granted by Blue Shield which is a relief.  Once we get the paperwork, we’ll call down to UCLA and make the appointment. Please pray there is an open slot waiting just for me asap.

I wish I could say there is some joy in remembering Rudy today…I wish I could say I’m making progress in my grief…but I can’t.  Today the mud has hardened and life is at a standstill.  Today the grief is unbearable.

Rudy’s school installed a bench in his memory outside his special ed classroom on Thursday…’grateful for such a sweet tribute on such a painful day.  ‘Grateful, too, for everyone who reached out to us this week through texts, emails, phone messages, cards and flowers.  Your love continues to buoy us.  Please continue to pray.

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“Rudy’s Buddy Bench” at Mountain View School

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Our visit to the bench on Rudy’s bday…with Oma.