Been a long time since we heard from Rolf

Rolf here. It’s been awhile since I took a turn with a blog post.  Some have noticed less of a presence from me here and on social media.  I guess I’m finding it more comfortable to process the current journey a bit more privately.  I do appreciate Trish’s process and am especially grateful for the prayer, concern and love that reaches us from around the globe as people walk along with us via the blog.  Lots of stuff in my head and heart and someday I might get back to a place where I’m writing about it–but rest assured I have good outlets to process things in the meantime.

If you’re willing to buckle in for a long read, I did want to share my keynote from the Community Prayer Breakfast here in Santa Barbara in late September.  Amidst the fog of the past months, I’ve been grateful for moments of clear thought and figured I’d share one of them.  Many of the words were spoken through my tears, which the audience rightly read as grief over Rudy–only a handful of people knew about the ALS diagnosis which we had only received a few days before.  Thanks for loving us.

 

I had something pretty different in mind last winter when I was invited to do this.  I picked one of my favorite passages of scripture and had some really good ideas about what I wanted to say.  As time allowed, I had employed a few of the study tools from back in seminary to mine a few profound theological gems and was keeping my eye out for some good quotes, vivid examples and anecdotes to brilliantly illustrate my points.  It was going to be awesome:  witty, thought-provoking, funny and inspirational but unfortunately pretty disingenuous.

I thought about getting out of this—and Reed was even kind enough to inquire a few weeks ago as to whether I was still up for this.  My answer then was a tentative “let me give it a shot” and, if I’m being completely honest, it’s probably even more tentative than that right now.

  • But for the past nine years, our family has lived in a place where babies die, where kids are afflicted with unspeakable suffering, where parents need to make gut-wrenching decisions, where siblings have to watch powerlessly, where doctors and nurses—who have a choice about where they could practice medicine—fight with such dedication and passion to try and help high-risk patients even with death being so frequently an outcome.
  • On a daily basis, I work in a place where people have dealt with lifetimes of trauma and heartbreak such that the pain is almost too difficult to put into words—let alone process.
  • In watching people in this community and beyond, I have learned that life in our world can be brutally creative in coming up with means to crush us. I have watched others suffer things so unthinkable that it would make me rejoice that I only got the kid with the terminal heart defect.

In all of these situations, I have watched people somehow move forward and I don’t completely know why they did it or how they did it, but at least I know it’s possible.  At the Rescue Mission, I watch our team work with people whose lives have been shattered—often so badly that they can’t even picture that wholeness is possible and what that might even look like.  All they’re asked to do is take one step; do today—maybe just do the next hour.  And somehow they heroically summon the ability to do so.  We spent many months in the ICU—enough to watch our share of nurses having rotten shifts where tragic things happened to the kids they were fighting so hard for.  I saw them fighting back tears as they gathered their things to go home.  And I often wanted to ask them, “Why are you coming back here tomorrow?  I’m stuck here—I’m not leaving my kid.  But you have a choice.”

So, I know that moving forward is possible and I need to figure out how to do that.  I wish I could stand here this morning with more clarity on what that path looks like, but the wound is still too fresh.  I’m still in the stage of grief where my head spins, basic tasks are a challenge, cogent thinking is so occasional that I’m grateful when it happens and I certainly don’t have resolution.  I think I believe everything I’m supposed to about God:  That He is good; that He cares; that He turns mourning into dancing and that joy comes in the morning.  I’m pretty sure I believe all of that, but I can’t really say that I know it yet.  I can’t talk about how God redeems tragedy because that hasn’t happened yet.

So I thought about just going ahead with the outline I started at the beginning of the summer, but when I tried to finalize that, I found myself in a wrestling match.  My heart just wasn’t in it.

What’s on my heart?  Doesn’t exactly take a mind-reader to figure that out.  My little boy, Rudy.  Don’t be nervous about saying his name because I think about him all the time.  His smile, the sound of his voice, the squeal, the laughter and his trademark snort.  I miss the feel of the back of his neck with the short stubby little hairs at the base his crewcut that would poke me in the face when I nuzzled up against him.  I loved the way he laughed himself breathless only to plead for more tickling.  I want to talk about my son.  He was a light.  I miss him greatly and there’s a danger that once I start this event will have to include a second meal.

I’m not complete and I’m not sure I’m particularly well so I can’t make very many conclusive statements, but even at this point, I can hopefully make some observations amidst the grief I’m feeling over a life cut far too short:

  • My journey with Rudy taught me that my purpose in life may be very different than what I pictured it might be.

It was probably back in my college years that I started pondering what my purpose was in life.  Understandably, it had a lot to do with career.  If I could figure out what I was supposed to “do” then I could take steps to get there academically and, as I entered into the workplace, proceed on a track to get me there.  Around that time, my faith took me in perhaps a bit of a different direction as far as ministry and service, but the mindset wasn’t all that different.  I was still operating in a framework of achievement—maybe I wasn’t going to build a business empire or innovate something cool, but it was still about accomplishing something “in the kingdom of God”.

That thinking probably led me across decades, until we started on an unexpected journey about nine years ago.  It started with 8 months in the ICU and then contained realizations that our son wasn’t likely to live a full life and being his parents wouldn’t include many of the milestones and achievements that often become what we confuse as purposeful parenting.  I realized that God would judge me as a father not in how well I prepared and launched a human into the world, but in how completely I loved this little boy.  And from there I realize that this is the same standard for my other kids–exceptional, bright and high-achieving as they might be.

While I don’t think I’m supposed to not be thoughtful about what I do from nine to five, if it’s not primary to God then I probably shouldn’t make it more of a focus than he does.  My being faithful to my purpose has much more to do with whether I love and am faithful within whatever roles I’m placed in.  When we quote “well done, good and faithful servant” at funerals I think our achievement orientation gives us a sense that God would be saying “Good job, I couldn’t have done it without you” and I just don’t think that’s true.  I long to hear these words, but I don’t think it’s going to have much to do with whether I was a good Rescue Mission president, but everything to do with the husband, father, son, brother and friend I was.

 

  • My journey with Rudy taught me that focusing more on yourself doesn’t solve more of your problems.

In the book I’m never going to write, there may well be a chapter on what I call the “goldfish principle”. We’ve had a number of goldfish in our house over the years and one of the things we’ve learned is that, provided you clean the water, goldfish will grow to the size of the tank they’re in.  Leave them in a small tank, they stay small.  Give them a bigger tank and they’ll grow much bigger.

I’ve found that problems can be the same way.  While you can’t just deny them, sometimes you can limit them by how many resources you can give to them.  Rudy’s life required round-the-clock logistics—daily management of at least a dozen medications given 3 different times a day.  He never ate by mouth and we had to schedule and give 5-6 feedings a day.  There were appointments to schedule, pharmacy orders to fill, insurance approvals to work out—a huge mess of things added to the overriding heartbreak of his condition.

And part of the way we managed it was by realizing that other people have problems too.  They may not be our particular heartbreak but they are heartbreaks nonetheless.  And we don’t simply need to recognize them, but we also can help them. We can get tricked into thinking that we have a limited reservoir of love and concern we need to conserve it lest we run out—so a crisis like the one we’ve lived in becomes the only thing we can focus on.  And unfortunately we’ve discovered that it doesn’t really aid in solving things.  Love doesn’t need to be preserved and protected.  We likely have way more capacity to love than we ever imagined, and the way to tap that is, not to disregard our own problems, but to make sure we’re looking past them to the things other people are struggling with.

 

  • My journey with Rudy made me appreciate our calling to be gentle people.

In Philippians 4, Paul gives what might be a very unique final instruction:

4 Rejoice in the Lord always; again I will say, Rejoice.

5 Let your gentleness be known to everyone. The Lord is near.

 6 Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.     (NRSV)

 

There are a lot of things Paul could have chosen to assert here, yet here he sums it up with gentleness.  Based on my perception of Paul as a straight-shooter and unafraid of confrontation, I might have expected him to say something a lot more assertive; calling people to strength and courage.  He is completing a letter that was written into conflict.  He is in crisis—sitting in a jail cell with severe consequences hanging over his head.  He’s been emphatic in clarifying some points of doctrine and spoken clearly of opposition and enemies and while he is preparing the audience for a kind of battle.

Given the environment, we might expect such a letter to send the Philippians off locked, loaded and ready to take no prisoners.  But one of the last thing he says is—let everyone see how gentle you can be.  Paul didn’t write this letter intending that it make for eloquent reading—he’s clearly instructing people to take a course of action—but within that, he’s saying “If people don’t see gentleness, then you’re doing it wrong.”

I think it would be a mistake to minimize gentleness to mean we should just be timid or sheepish.  I don’t think it’s consistent with the rest of the letter for Paul to tell us in the end, “just be meek.”  In a sense, one could limit the definition of gentleness to simply something to the effect of tenderness, or mildness which are not bad things.  These are certainly part of it, but I think it serves us to build a more detailed description of gentleness.  I believe the definition has a connotation of yielding in the sense that one does not need to insist on justice, rights, winning or having our way in every instance.

Gentle people have an air of reason about them such that they are able to let a lot of things go without much hassle.  They reserve their energy and especially their anger for things that merit it.  Yet there are so many things we have a tendency to get worked up about.  We are so attuned to notions of right and wrong that we react so quickly and feel justified in doing so when we are slighted.  Whether we’re not getting the respect we deserve, or feel we’re not being treated fairly, or certain of how right and moral we are on a certain point…we can quickly feel that gives us license to tear into someone.  I’m amazed at how the internet has created a place where even the slightest everyday annoyance or discourtesy gives us a venue to unleash our umbrage—but is that the mark of a person striving to be gentle?

The issues Paul is writing about are not trivial everyday matters, but of far more importance.  These are very important issues and very critical arguments, but even in these there is no point where Paul gives license to tear into the opposition.  Being in despair can cause you to lose civility and I have certainly felt the impulse to tear into people, but there’s no footnote saying “those of you who’ve lost a kid get a pass on this one.”

My ability to be gentle isn’t something that needs to be fabricated or some facade I need to somehow will myself to maintain.  It’s actually rooted something very tangible.  Immediately after he gives the command to be gentle, Paul assures us that the Lord is near.  If we were bobbing in the water after a shipwreck and you told me not to be afraid of drowning, it would sure help if your next words were “I’ve got a raft”.  If we found ourselves in complete darkness and you told me to not be afraid of the dark, I would be very comforted if the next thing you said was “I’ve got a light.”

So there’s the same kind of comfort when Paul says “you can be gentle.  God is near.”  My impulse to not be gentle; to lash out and fight for myself comes from a fear of scarcity.  I may say, if I don’t stick up for myself, who will?  I may be overlooked.  I may not be taken care of.  I may get trampled.  Paul is telling me that I don’t need to panic or fight.  God is right here watching over me. And will fight on our behalf.  If we believe that the peace of God can guard us, then we don’t need to go through life with our hand on the trigger.

While everyday slights often are a pretty good indicator of how well I’m living out profound truths, the exhortation to be gentle needs to extend to places where the stakes are so much higher.  Because if you haven’t noticed, our world is unfortunately not a gentle place.  I know that firsthand, but I’m sure there are people in this room who can come alongside me with their own stories of anguish and sorrow.  We don’t need to pull the lens back all that far before we start to see incredible atrocities and unimaginable depths of human suffering.

In the midst this world, we need to take notice that, despite being a theologian and a reformer, Paul didn’t say “Make sure people clearly see your doctrinal position” or “Let everyone know where you stand on the issues”.  What he did say is “Let your gentleness be known to everyone”.

As I’ve stumbled and limped through the past few weeks, I’ve quickly found that I’m not all that different than the men and women on the patio at the Rescue Mission.  The packages may look different and the circumstances may be varied but the yearning for gentleness when the world has crushed you is very much the same.  We can be as convicted and right as we need to be, but I’m not sure there’s any way to truly fulfill our calling and take on the burden for people in need if gentleness is not clearly evident.  My prayer that such gentleness would be what marks me and the church we belong to.

 

 

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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