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.

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.

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!!!

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

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.

 

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!

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…

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.

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!

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.  

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.

Thank you friends!

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.

When Rolf and I dropped Max off at Point Loma last month, we were happy to be a part of the two-day new student orientation festivities but, I admit, it was hard to embrace all the parent seminars and “meet ‘n greets” as we were still pretty raw in the wake of Rudy’s passing.  Ironically, we weren’t  that emotional about dropping our big boy off at college…we were just so excited for Max.  He was so ready to be there and he jumped into the college scene enthusiastically with both feet.  It was really fun to watch.   So, it made for some awkward interactions with folks when waves of grief hit us at the most random times…like over a plate of pulled pork!  We got sympathetic looks from other parents and Rolf and I just wanted to jump onto the table and yell “we’re not crying because we’re dropping off our son at college!!  There’s a bigger story here!!”.   It was weird.  We had this strong compulsion to fill in the blanks because we felt a little disingenuous as well as misunderstood.  We had this need for complete strangers to know the whole truth.

We find ourselves in a similar situation this month.  Life is getting more complicated for our family and as we sit dumbfounded and in shock, we feel the need to say “Our grief is not just about Rudy.  There’s a bigger story here!”.

I was diagnosed with ALS a week ago today.  I have been feeling “off” for several months but it wasn’t until Rudy passed away that my symptoms came into focus.  Without the added stability of pushing Rudy’s wheelchair, I noticed a more pronounced limp in my left leg.  And because I no longer needed to use elevators and ramps, I attempted to climb stairs and found I couldn’t do so without pulling myself up with the hand rail.  There is no pain, just weakness in my limbs and subtle changes in my speech.  I saw the neurologist (who was Rudy’s neurologist too!) a week after Rudy’s funeral and submitted to a series of tests that culminated in a MRI a week ago last Thursday that did not show a pinched nerve or obstruction of any kind.  Dr. C is 95% sure it’s ALS but, of course, is recommending we seek a second opinion and we are doing so at UCLA pending insurance approval.

Rolf and I have decided to share our situation publicly before confirmation of the diagnosis for two reasons.  First, my symptoms are becoming more pronounced and people are beginning to ask what’s wrong.  Second, we would rather have our friends and family praying from the get go.  We are starting this next phase of our journey already worn down and fragile, the weight is crushing and if we’re going to do this “well”, we need our community.  How that will look, I’m not sure yet but if Rudy taught us anything, it was to live life one day at a time and we will figure this out as it unfolds.     What we are asking from our loved ones at this point is for prayer…prayer for mercy, prayer for wisdom, prayer for healing (emotional/physical), you name it, we need it.  Once we have our second opinion, we hope to have a better sense of where we are and what our practical needs will be.

My greatest concern right now is for Rolf and the kids.  Rolf and I told the kids on Monday.  The MOHD squad headed south on Tuesday, picked up Wilson in LA and joined Max in San Diego for the day.  It was a hard day but it was good to be together.  We had a candid conversation that ended with Max initiating prayer and I walked away so grateful for my family’s strength of spirit and faith.  That being said, we are all being forced to carry an intense burden ON TOP of our grief and I want to insulate my family from it all with every fiber of my being…but I can’t.  Once again, we find ourselves in a hard space to comprehend that is totally out of our control…and we miss our little boy.

Dr. C encouraged us to go home and “go about our business”.  I intend to do just that.  I have decided to not do any research on the disease or on local resources or do any specific planning for the future until the 2nd opinion.  I feel strongly that I am to take this time to focus on heart and family.  Rolf, Olivia and I will begin specific counseling later this week.  I have already begun taking the one drug that is available to me right now.  I appreciate the loving advise from family and friends who have personal or professional experience with this disease but ask that you hold off sharing it with us until after the 2nd opinion.  I’m feeling the need to pace myself and not jump into an ocean of confusing information until it’s confirmed this is the path we’re on.  For now what we need more than anything is your prayer and emotional support.

(No real comfortable segue into these pictures but I love my family’s ability to embrace moments of joy in the midst of hard life stuff…)

We will update as soon as we have new information.  Thank you dear ones!

Waiting in hope, Trish

P.S.  I have a Bible app on my phone that gives me a random verse a day…I was struck by the appropriateness of last week’s line-up.  Given the fact I can barely focus on anything, let alone reading, I appreciate God meeting me where I’m at…

 

 

Our girl turned 15 years old last week.  I remember the day she was born vividly.  I remember how thrilled we were to have a girl…and we weren’t the only ones!  When we got settled in the labor and delivery room at UCLA on September 9, 2002, an adorable nurse came bouncing in and said with a clap of her hands “So, what are we having today?” to which I replied “We don’t know, we like to be surprised and we have two boys at home who can’t wait to find out too.”…”WAIT!  You already have two boys and you don’t know what this baby is??”…the anticipation in the whole room heightened at that point.  Rolf took a picture of me holding Olivia just moments after she was born and that same nurse was captured in the background of the snapshot with a big smile and tears streaming down her face.  Ha Ha!  It was hard for even the nurse to NOT get caught up in our joy over Olivia’s arrival.  🙂  I knew that day that Olivia would be a special addition to our family…but I certainly could not have imagined the many ways her “specialness” would be demonstrated in her young life so far.  The courage, poise and transparency she displayed at Rudy’s funeral standing alone at the podium sharing stories about her little brother was a perfect snapshot of how Olivia navigated life with Rudy too.  Her young spirit continues to be tested and she continues to emerge with a beauty and strength of faith that inspires and amazes us.  I am so grateful for our girl.

Rolf, Olivia and I had our first counseling session and I’m grateful for the opportunity we’re having to do it together.  I’m sure as our journey through grief continues, there may be times we seek individual counseling but, for now, it feels right to be together.  I think it’s good for Olivia to watch Rolf and I process our grief openly and I think it’s good for Rolf and I to not only hear where her heart is at but to hear what’s being spoken into her life as well (not in a smothering, controlling way but as quiet observers with a big picture perspective).  A significant observation pointed out to Olivia by the counselor in our first session was that Rudy taught her her capacity to love (and, as a side note, how important that will be as the boys start to come around).  The side note was shared with a smile but it did get me thinking.  It’s true.  I do believe Rudy revealed to all of us our capacity to love and I pray this has a lasting impact on the big sibs for sure. They have learned through their experience with Rudy to love unselfishly and deeply (and also what a valuable gift that is to give) and this will serve them well as they mature in their understanding of love, maybe meet the loves of their lives and, God willing, have children of their own someday.

But I also believe that part of understanding our capacity to love is recognizing that we are, at the same time, lovable.  Being people of faith and trusting in the unconditional love of God, Rolf and I purposed to teach our kids from day one that they are loved by God for no other reason than simply who they were created to be.  From the very moment they were conceived and came into being, (before they could do anything to deserve it) they were loved by God and, therefore, are lovable.  As parents, we try to demonstrate that kind of love to our kids but we’re human and we do it clumsily.  Rudy, however, was great at it and I would often say to the big sibs “How does it feel to be so completely adored?”.  As Rolf shared at the funeral, Rudy didn’t love with his mind as much as he loved with his heart and his soul and he had special ways of communicating his love that were more often than not directed toward his big sibs.  Rudy adored his three siblings because of who they were at their core…”core to core love” is the only kind of love Rudy knew how to express and in doing so, we all learned how deeply we could love another.

Of course, with a deep capacity to love comes a deep capacity to hurt which is where we are now.  There are lessons to be learned in the pain of grief but it’s hard to see them now…those lessons will come into focus someday down the line.  For now, though, my prayer is that we all recognize that as we confront the pain we’re carving out an even greater capacity to love and, I pray, we find comfort in the fact that core to core love doesn’t end no matter the distance.

Warning:  I know post mortem photographs are uncomfortable for a lot of people so I’ll post the following picture far below so you need to scroll down if you want to see it.  I know it’s sensitive and and I know it’s sacred which is why I’m sharing it.  Sometimes, to avoid discomfort is to miss a beautiful moment…in this case, a picture of what one’s deep capacity to love looks like.  This picture was taken in the SB mortuary…it was the first time the big sibs saw Rudy after he was taken away from the ER in Oklahoma the morning he died.  It was a difficult outing…I don’t think any of them wanted to be there particularly but Rolf and I felt it was important they see Rudy once before his viewing a couple of days later.   It was hard but they did it…they pushed through their fear and their discomfort and took full advantage of the opportunity.  Olivia made Rudy a friendship bracelet and when I asked her if she wanted to give it to the mortician to put on him, she said she wanted to do it herself.  So, with Wilson’s help gently lifting Rudy’s arm so she could easily wrap it around Rudy’s wrist and with Max watching close behind, all three partnered in one last expression of love toward Rudy.  It was magnificent.  A moment I’ll never forget.

Please keep praying for us friends.  It sounds so selfish (and so needy) but we need God’s restorative power now more than ever…Rolf and I, especially, continue to battle lack of sleep, numbness, inability to focus.  All to be expected, I know, but nonetheless challenging to navigate.  Thank you!!!

 

 

 

 

 

 

When the big boys were little they played Tony Hawk’s Downhill Jam video game ALOT and every time their video game persona would crash, all they had to do was shake the remote control and the game would reset.  We’d get so caught up in watching them play that when they’d crash and burn we’d yell “Shake to recover.  SHAKE to RECOVER!!” at the tv screen. Naturally, that transferred over into real life so when the kids would fall down, we’d encourage them to “shake to recover” and if they weren’t hurt, they’d hop up without skipping a beat and continue to play…no tears, no fuss.  I was reminded of that a couple of times this week because I still wake up in the early hours of the morning in total disbelief that Rudy is gone and I’ve caught myself physically shaking my head as if that’s somehow going to reset the events of the past 6 weeks.  Then my heart breaks all over again when I come to the realization that it doesn’t work that way in real life…only in video games.

It’s September.  August feels like a total blur.  We’re slowly finding a rhythm to our daily routine here at home.  We hear tidbits from the boys on our family text thread and they seem to be settling in too..

PU

The MOD Squad had an excursion yesterday…something we can add to the growing list of things Rudy couldn’t have done with us.  First on that list was a pit stop we made in Vail on our marathon drive back to California from Kansas.  We stopped in Vail to find a potty and stretch our legs and decided, spontaneously, to ride the gondola up to the top of the mountain…

Rolf, Olivia and I decided to break up the long holiday weekend yesterday with a day trip up north to San Simeon to tour Hearst Castle (a favorite stop on California’s Central Coast).  We’re in the middle of a brutal heat wave here and it wasn’t lost on me that Rudy would have had a difficult time in the 100+ degree weather on top of the hill where the mansion is located.  With all the transfers and steps and narrow corridors, it’s just not a place we could have ever taken him…so we made sure to enjoy it that much more and not take any of it for granted.

I’m kinda carving out a routine to my day.  I’ve been getting up and doing my house chores early before it gets too hot and then before I know it, Olivia and Rolf are home and I couldn’t tell you what filled my day (you know, part of the “blur phenomena” I mentioned earlier).  I know that things will become more defined as time passes but what is clear to me now is how much I miss the “Rudy routine” and the people we met along the way.  Rudy definitely widened our circle of relationships…for me especially.  His therapists and nurses and doctors and doctor’s office managers and special ed teachers and aides and bus drivers and pharmacists and the enteral supply reorder lady (and, yes, even the crApria delievery man) became the people I interacted with on a daily basis and although the friendships will last, I know, the daily interaction with these people is gone and that is part of the loss for me.  We haven’t just lost Rudy, we’ve lost the entourage and the party that seemed to follow Rudy wherever he went.

I ended up incorporating a couple of trips to the cemetery this week as part of my new routine and both times I ended up interacting with one of the grounds keepers.  On my second interaction with her, I found out her name is Gayle (or Gail?) and that she never had children.  She has worked at the cemetery for a while and takes great pride in her work.  The second day we talked she was tending to the hedges along the perimeter of the property and she told me “I consider the cemetery the painting and the hedges the frame…and a beautiful frame can make a painting pop!”…what a sweet and clever perspective.  I thanked her for taking such good care of things and as she drove away in her little maintenance cart, I thanked Rudy for widening my circle…again.  I know that there is going to be a moment or two (or twenty) in each day where I’m going to long to be able to shake and recover from a life without Rudy but it’s important to recognize that each day is also bringing new introductions and experiences that are rich and life giving and important to the life of our family as it exists now…and often, it’s the simplest that end up being the most profound.  Rudy certainly taught us that.

 

 

 

 

Rolf and I made it home safely late Saturday night from dropping off Max at PLNU.  It was a sweet time.  It was fun to watch Max take it all in and we’re confident he’s in a great space surrounded by great people.

Olivia, Rolf and I woke up Sunday morning to our “new normal”.  We went to church and it was hard.  Rudy’s absence was so acute and cut so deep.  There was a different kind of energy to our day without the big boys too.  It just really feels like we went from a family of six to a family of three overnight creating a seismic shift in our day to day family identity.  As a result, we’ve adopted a new nickname…at least on the days we do life as a trio.  Meet the MOD Squad (Mom, Olivia, Dad) – or as Olivia pointed out “the MOHD Squad” with a silent H to include Harley!  Ha Ha.  Life may be dramatically different but finding our way to adventure and fun are on the top of our priority list…stay tuned.

So, what’s next?  No idea and part of me finds that deeply troubling. When Rolf and I were dating I remember we had one of those “ah, ha!” moments in our relationship when we discovered that when we contemplated the future, my thoughts centered on what I’d be doing and Rolf’s were centered on with whom he’d be…a clear demonstration of my task-oriented tendencies and Rolf’s relational approach to life.  This weekend as Rolf and I sat on a bench along the campus thoroughfare and watched PLNU’s incoming freshmen visit dozens of booths set up to inform them of all the wonderful campus activities they could choose to be a part of, I felt an overwhelming sense of panic out of the blue, turned to Rolf with tears in my eyes and said “What am I going to do now?” to which he replied “I don’t know but I know who you’ll do it with.”…a sweet thing to say and a reminder that there are some aspects of who we are that haven’t changed a whole lot in 25 years.  🙂 There’s a big part of me that needs a task to feel grounded but at the same time I’m not motivated by much at the moment so there is an inner conflict that is beginning to surface. The goal is to pace ourselves in the many adjustments before us and, hopefully, find our purpose and direction each day as it unfolds.

I started going through Rudy’s belongings.  I unpacked his travel bag late last week.  It’s hard to know what to keep, what to let go.  These aren’t decisions I’m feeling pressured to make right now but it will be a daunting task whenever the time does come.  Gosh, it’s just heartbreaking.  Interestingly enough, our choices in what we would bury with Rudy came quickly…in an attempt to record the details of that week before his funeral, I quickly snapped a picture of the things we took to the mortuary so I wouldn’t forget:

We purchased the Lightening McQueen pajamas a couple of weeks before our road trip and Rudy wore the pajama top several times as a day time outfit.  He called it his “jersey”…he wore it the two days we were on the road and would have worn it the day he died but I insisted we wash it before he wore it again.  I’m so glad he wasn’t wearing it when we took him to the ER because they cut the shirt he was wearing off and discarded it. The Lightening McQueen slippers were a prized possession and he often asked to wear them as outside shoes…ha ha!.  Wilson bought Rudy the Lightening McQueen cap at his Disneyland Grad Night a couple of years ago and it was his favorite.  The Rt.66 cap was a souvenir he got the first night of our trip and he was wearing it in the last picture we took of him.  I actually wanted to keep the red cap but Olivia felt strongly he should have it and she was right.  The Lightening McQueen books and car were among his all-time favorites and, of course, his container of pacies that Olivia shared about at his funeral had to go with him too.   

Rudy’s custom casket panel was a gift from our friend Chris…I never even knew you could order a custom casket panel.  It was a sweet detail in the midst of some pretty tragic decisions and there is comfort in knowing Rudy is surrounded by familiar, favorite things.  I know stuff is just that…stuff.  But there can be pretty profound meaning attached to the things that surround us and that’ll be the challenge, of course, in sorting through Rudy’s things…ugh.

There was, however, a stash of “stuff” I was happy to unpack and put away this past week…

…my emergency hospital bag.  When we brought Rudy home from the hospital in May of 2009, I vowed I wasn’t going to be caught off guard again with a surprise trip to the hospital so I packed a bag with the essentials and kept it within arms reach along with the portable file box of important papers, etc for the next emergency trip to UCLA…it sat in it’s spot in our bedroom entry way for EIGHT years.  It didn’t get used in the eight years we had Rudy home because he was never admitted to UCLA (or Cottage Hospital in SB) for an unscheduled visit/emergency!  ‘Hard to believe.  There were plenty of trips to the ER but none ever resulted in him being admitted.  It’s quite remarkable, really, and I praise God for it because after Rudy’s harrowing first 7 months in the CTICU/PICU, I expected he would be in and out of the hospital with all kinds of setbacks.  Instead, his hospital stays were all for scheduled procedures that were never chaotic or fearful for him.  What a gift to him…and us.  His rich quality of life was marked by many things and I count this among them!

One last thing.  A lot of my brain space has been consumed with the big kids…concerned and heavy-hearted for all of them as they settle into their new normal at APU, PLNU and here at home knowing they’ll be confronted by their grief and wishing I could prevent the pain.  I was comforted by the “verse of the day” that popped up on my Bible app today…

I’m counting on it!

Thank you for your continued prayers dear friends!