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.

Full Disclosure

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…)

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When in San Diego, go to Belmont Park!…
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…and ride my favorite roller coaster…the Giant Dipper!!
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I love this family!

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…

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Capacity to Love

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.

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Olivia sharing “sibling memories”.

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!!!

 

 

 

 

 

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This is what a deep capacity to love looks like.

 

Shake To Recover

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..

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Wilson helping Rolf’s Stanford college roommate (now an APU professor) and his wife move.  Aww!

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Thanks to PLNU’s Instagram posts, we see that Max is hard at work and making friends!
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He also went to church in San Diego this morning…(while I played hooky and wrote a blog post). #feelingalittleguilty     Thanks for the picture Gracie!
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Harley has had no problem settling into her new routine on Avenida Gorrion!

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…

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Vail, CO – July 29, 2017
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We got to the top just in time to see a magnificent sunset.

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.

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Hearst Castle in San Simeon, CA
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We even drove up the coast a bit farther to see the elephant seal cove.

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.

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The MOD Squad

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.

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All moved in and ready to start this new chapter.
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Wilson surprised Max by coming down from APU Saturday afternoon which added to the fanfare of the official send-off!

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.

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The MOD Squad!

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:

IMG_7215We 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.   

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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…

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…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…

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I’m counting on it!

Thank you for your continued prayers dear friends!

First Day of School 2017-2018

The school year has begun in Goleta.  Olivia’s first day at the high school was on Monday and today would have been Rudy’s first day in 3rd grade.  It’s a sad day for sure.  It’s also ironic because in our first months with Rudy I remember it was impossible to think ahead and make any plans.  We really couldn’t look beyond what was right before us in our months in the CTICU/PICU…even once we got Rudy home it was difficult to look too far into the future…taking life “one day at a time” wasn’t a cliche, it was our reality…for years!  But that changed a little bit in the last couple of years.  We started to make plans and even went on a few trips – once to Hawaii with the grandmas, and then to Tucson last summer and to Florida over Christmas.  We were beginning to anticipate and think about a future for Rudy.  Knowing that our life would be consumed with college prep when we got home from our summer road trip, I even went school shopping for Rudy in early July. I know that doesn’t seem like a big deal but it demonstrates a level of confidence not always present where Rudy was concerned.  When I went to his classroom on the last day of summer school on July 19th, we said goodbye to his teachers and aides fully expecting to see them back in the classroom…today.  Rudy died 5 days later…still so difficult to grasp even now four weeks later.

Rudy’s teacher invited me to come to the classroom this morning for a tribute she was going to do with the kids.  With the students, teachers and aides from both special ed classrooms, as well as the school nurse, school psychologist and office staff present, Ms. Ochoa shared about Rudy’s passing, reminisced with fun pictures from last year and used video clips of Rudy doing his reading, math etc to demonstrate the fun things the kids will learn this year.  It was painful and precious and a sweet way for Rudy’s community at Mountain View to process as, they too, genuinely grieve Rudy’s absence on campus.

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Today’s school agenda in classroom #9.
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Ms. Ochoa presented me with a box of treasures for the family that included Rudy’s name stamp he would use on assignments, his ball, a Vtech Lightening McQueen video game incentive, his behavior modification cards and sweet notes from his classmates and teachers. Ugh, a perfect example of “bittersweet”.
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Rudy’s desk is still in the classroom and was reserved for me today.
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Funny, because I said the same thing about Olivia on Monday in a FB post…the bravest girl I know (anxious and reluctant but bravely heading off to her first day of 10th grade).
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Our 10th grader.  We are trying hard to anticipate, in faith, the great things this year will hold for our girl!

I wish it didn’t hurt so much.  I’m finding that grief is like drudging through mud with barbed wire debris mixed in…somedays the mud is only waist high and somedays it’s neck high but every day there are painful brushes with the barbed wire.  In an effort to figure this grief thing out, I find myself coming at it from different angles…seeing if any one strategy is less painful than another.  The fact is…no matter how you slice it, it’s painful and for me facing it head on seems to be the only way to do it.  I do things that I know will be hard and commit to things I’d prefer to avoid not because I’m a masochist but because there is an underlying hope that if I confront the pain, relief will come sooner.   I’m not sure that’s working out for me in that way but there is the confidence that with each day that passes, we are all a day further along in the healing journey.   Rolf, Olivia and I are choosing to go to grief counseling and that starts next week…there is relief knowing it’s on the calendar.

Speaking of healing, we got a dog.

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Meet Harley!

Rolf and I always thought that if something ever happened to Rudy, we would let Olivia get a dog.  Although having a dog wouldn’t ever be on my list of “things that heal”, it’s definitely on the top of Olivia’s and the process of adopting Harley from a local shelter happened a ton faster than we anticipated.  That along with the fact that “Harley” was #2 on Olivia’s favorite dog name list sure makes it seem like this pairing was meant to be.  Harley is active and playful but also very chill most of the day (and rarely barks!).  She’s an excellent running partner for Olivia and loves to cuddle too.  They are becoming best friends for sure.

Just as Harley moved in, the boys began their preparations for moving out.  We all drove Wilson down to APU on Sunday.  He was the last in his apartment to arrive so we enjoyed seeing all three of his housemates and catching up a bit before we had to head back to Santa Barbara.  Wilson was eager to get back to Azusa and settle in before his classes begin next week.  He knows he’ll have bad grief days and already has trusted people close by to talk to and he’s aware of the campus counseling resources if needed.  We’re confident he’s in a good place and pray his year is filled with lots of grace and favor AND FUN!  (We’re so proud of you Wilson!!!)  Go Cougars!!!

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Maxo had his last shift at Kyle’s Kitchen today and is nearly packed up for his departure for PLNU on Friday.  By all accounts, he too is excited and ready to start this new chapter in his life.  (Big breath) Couldn’t be prouder of our Max as well!  Go Sea Lions!!

Wilson and Max concluded their summer break together with a fun gig on Saturday night with Mr. Latta (aka Baby Daddy – Rudy’s 2nd grade teacher) down south at a restaurant in Camarillo.  Mr. Latta invited the boys to join him and they couldn’t have had more fun!  Rolf, Olivia and I drove down to hang out for a set or two and ended up staying until they closed the place.  It was a great evening to hang with friends and soak up as much of our boys doing what they love to do as we could.  Here’s a little sample:

Our boys love serenading our friend (and SBRM employee) LB every time they are at the office for a special event (because LB just LOVES to be the center of attention)…well, they took advantage of LB being there and embarrassed him by dedicating this number to him.  Ha Ha

Warning!  Wilson’s choice is a bit explicit but as he says “it’s a song about a cry for help” (and he sang it with confidence with two of his pastors in the room!)…and, oh how I love his confidence!!

The boys got invited back during their holiday breaks from school so we’ll be sure to give more advanced warning for their next appearance (for those close enough to join us).  It was too much fun.  Thanks Nate for not only including our boys but making them feel pretty special in the process!  Talk about chicken soup for the soul.

It may feel like we’re drudging through neck-high mud at times, but we are still on our feet and that feels like a victory in and of itself.  Love you dear friends!