(Big sigh) It will be three weeks tomorrow since Rudy passed away…and the big kids and I are planning a day trip to Oxnard to go school shopping.  Rolf returned to work today. The daily routine filled with every day life stuff has resumed.  It’s painful and hard to navigate.  It’s difficult to focus.  To exist is to ache.

It is impossible to recap the past three weeks.  There are so many details that are already lost because there was just too much to retain.  I can say, though, that our family experienced one sacred moment after another since Rudy’s death where raw pain and the loneliness of excruciating loss were met with extravagant expressions of God’s grace and love over and over again.  The care our family received from family and friends in the wake of Rudy’s passing has been tender, generous and comprehensive.  The plans we made while still in Kansas and asked friends in CA to execute played out seamlessly without a hitch.  The details of Rudy’s return to CA and the process of laying him to rest were done well and honored him so sweetly.  Rudy’s funeral service and burial were Holy Ground experiences, for sure, where God took our plans and knit them together into something truly glorious giving us all a glimpse of Heaven on earth.  Rolf, the big kids and I have extended grace, love and concern to each other in the midst of our individual pain…something we don’t take for granted in these tense times.  There have been a lot of groaning sobs but there have also been a lot of laughs.  I think we all tried real hard to live in the moment these first crucial weeks and we survived.

Now, however, the hard work of grief begins…now that the adrenaline rush is subsiding and family & friends are all gone…now that time is no longer standing still and we’re confronted with the reality that life is moving on with or without us…but definitely without Rudy and that hurts.  Unfortunately, there has been room to think this past week since Rudy’s funeral and it has been hard to control my thoughts.  I’ve been haunted with all the “what ifs”…what if we didn’t go on the road trip at all, what if I hadn’t instructed Wilson to give Rudy a bath that morning, what if I had been more attentive when he got fussy, what if, what if!!  I’m actually surprised my mind is even going there because in the days immediately following Rudy’s death, Rolf and I felt strongly that there wasn’t anything more we could have done and everyone in the family worked so well together to insure Rudy got the best care.  It all seemed so clearly out of our control. My rational mind knows it to be true still but my heart is burdened by the haunting thoughts and I desperately want to turn back the clock.

So, what are we doing now?  More than we probably should be doing…there are many details on our plate right now that need our attention so we’re trying our best to focus. There is a local family in need of a medical van like ours so we are working with them to transfer ownership this week!!  Though a huge blessing for all, the sudden loss of the van is thrusting me into a car buying process that I wasn’t quite ready to do just yet.  As a result, we decided to rent a car for a month or so to give us time to car shop.  The boys leave for college NEXT WEEK so this week is all about college prep and packing!!!  It’s obviously too soon for me but I think both boys are excited to get settled and start their school year.  Olivia starts school on Monday!  A lot of my process won’t start, I don’t think, until everyone is back at school and the house is quiet.  I had to go to Rudy’s neurologist’s office today for an appointment for me and it was followed up by a stop at the blood lab where Rudy got his monthly blood draws.  It was hard to be in these familiar places without Rudy and many tears were shed today.  I’m sure there will be many days ahead with the same refrain “many tears were shed today” and we’ll take it all one day at a time.  Please keep praying for us, friends.  It’s going to get harder before it gets any easier and, to be honest, I’m feeling fearful and insecure.

At last, Rudy back home in our home church. Sunday August 6th      (PC Greg Lawler)
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“Rudy’s Band” at the funeral. Monday August 7th      (PC Dale Weber)
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Olivia sharing “sibling memories”.
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Our family’s final goodbye.

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Our first family outing last week was to Kyle’s Kitchen…we were blessed by their tribute to Rudy!
We love you Rudy and are finding it hard to do life without you in it but there is comfort in knowing you are experiencing eternal life without limitation or sadness & pain. Good for you big boy!

Here’s a final instruction we gave at Rudy’s funeral.  Will you join us in paying it forward for Rudy? –

Rudy’s life was defined by love…and in his memory, we would like to extend his legacy of love beyond his local community. If you’d like to participate, we’d like you to make a copy of the attached cards to give away along with an act of kindness (preferably to a stranger). You could pay for a person’s meal behind you in the drive thru or at the table next to you in a restaurant. You could pay for someone’s car wash or groceries or weed a lawn. Get creative, have some fun with it and experience the joy of making someone smile… just as Rudy did every day of his life. 🙂

PIFFR copy

artwork by Cara Celeste VanNortwick

Summer 2017

Woo Hoo!  Summer vacation is finally here for Rudy.  Yesterday was Rudy’s last day of the “Extended School Year” program AND his last day of therapy for a few weeks which means today is his first official unscheduled summer day!  It also coincides with Max and Olivia’s return from camp which is very exciting for all of us…they’ve been missed a ton this week!  😉

Although Rudy likes school and enjoys his full, active days, it’s good for us to take this break from everything every year (I even try to limit the number of dr. appts scheduled this month).  Taking August off from Rudy’s regular schedule is something that has evolved over the years – part of pacing ourselves for the marathon – and it has served us well.   Rudy heads back refreshed (me too) and eager to start the school year again.  We’ll resume his weekly OT/PT schedule when school starts on August 23rd.

July has included a couple of big events that have been concerning and distracting…making it hard to focus on the daily “to dos” and filling our minds…but it has also been filled with a variety of special occasions and visits with friends filling our hearts so I guess it all evens out in the end.  😉

Here’s a pictorial review:

July started off with the annual 4th of July celebration at the rescue mission…a family favorite event!
PC: Dale Weber
Love this! Thanks Dale
Waiting for the fireworks…from across the street because we’re too cheap to pay for the park entry! Ironically, though, another family favorite tradition!!! Happy Birthday America!!!
July 5th marked the 10 year anniversary of our move to Santa Barbara…celebrated with Max at work with the Kyle’s Cookie Pie!! YUM!!
Olivia had a fun summer lacrosse season that took her to a handful of tournaments in southern California. Thanks to social media, she had a special visit during one of those tourneys from good friends Ruben and Marit who live in No Cal but happened to be in So Cal! So sweet!!!
Lacrosse banquet with big bro.
Next up? Vacation Bible School at our church…one of Rudy’s favorite places to be filled with some of hi favorite people. 😉
Super Hero Rudy
One of my favorite things this summer has been the opportunity to partner with the big sibs in music…Olivia joined the Sunday morning worship team lineup at church…
…and it was great fun to have Wilson and Max home to join us at the rescue mission graduation last week! Not to sound overly dramatic but it is one of my greatest joys at this stage in my life.
The Whittier fire broke out in the hills above Goleta a couple of weeks ago. Our hearts have been heavy for the neighborhoods evacuated and friends affected. We were visiting friends in the canyon below the day it broke out. This was the view from their road when we left that evening…yikes!
We only had ash and smoke to contend with at our house…Rolf found some fresh air out on the water. 🙂

Summer often brings friends to town on their summer vacations and more time to spend with local friends.  There will be more to come before the end of summer but here’s a look at some of our fun with friends so far this month!!!

Summer is also a time to unearth old toys and introduce them to Rudy….hmmmm, whose having the most fun here?
Rudy had a couple of episodes after swimming where he pushed it a little too far and got too cold. A little snuggle time with Olivia warmed him up quick…a little O2 helped too.
The boys have gotten in on the snuggle time too.
Pretty accurate!
Rudy and bus driver David are pretty special buddies…
So grateful to David and Nurse Jessica (and the army of teachers on campus) for keeping Rudy safe at summer school…and making it oh, so fun too! Yay Team Rudy!

And with that, we say goodbye to the 2016/2017 school year and say hello to Summer 2017… “HELLO SUMMER”!

Living in Limbo

I apologize if I’m beginning to sound like a broken record but I’m not a big fan of living in limbo.  On one hand, it seems like a pretty straight forward concept…”an uncertain period of awaiting a decision or resolution; an intermediate state or condition” and because we’ve been in this “intermediate state” as it relates to Rudy’s medical journey since 2010 AND because we’ve come to terms with not hanging our hat on the hope of the Glenn or heart transplant at this point, you’d think the whole “limbo” thing would become kind of a moot point.  The reality for me, however, is that I’m still wrestling with how that plays out in real time and I’m still exploring the complicated (and not so straight forward) layers of living in a prolonged state of limbo…primarily, of course, because it’s uncertain.

This isn’t the first time Rolf and I have lived in limbo.  There was a period of about 7 years when we left the work we were doing in South Central Los Angeles, before we made our move to Santa Barbara where we waited on God for direction.  It was a perplexing time because we knew without a doubt that God had called us to leave one situation but it was not accompanied by a clear calling TO the next thing whether it be a specific job or ministry or even location.  We moved seven times during that season and had close to 10 odd jobs between the two of us to make ends meet…it was a challenging time and I fought the temptation to be consumed by the uncertainty of it all on a daily basis.  I am a woman of order and discipline and I very much dislike it when my life is NOT orderly and disciplined.  ‘Doesn’t bode well for someone living in a constant state of uncertainty…until I learned that uncertainty doesn’t have to be a chaotic, negative thing but can be “an expression of breathless expectation” (quoted from Oswald Chambers, My Utmost for His Highest/April 29).  I grew to see the truth of that insight for our family back then and though the circumstances are different, I must believe it’s true for our family now as well…

Rudy had his 2-month appointment with his local cardiologist yesterday.  Again, nothing dramatically different was revealed in his echo…just evidence of the slow progression his heart is journeying.  Rudy’s hemoglobin is up from 21 to 22.9 (normal would be around 13).  To put things in perspective, Dr. Harake explained that Rudy’s enlarged right atrium and right ventricle are bigger than a big adult’s right atrium and ventricle would be which led to another discussion about physics which led to the warning that there is a limit to the pressure Rudy’s enlarged heart will be able to sustain.  He admitted that he just doesn’t know what will happen (there’s the uncertain part).  He hasn’t heard of a case of HLHS where the child has survived pre-Glenn as long as Rudy without surgical treatment…no doubt a miracle (definitely falls into the breathless expectation category) but, still, there is this nagging ache on which the fear of it all feeds (there’s the human nature component).  It’s difficult to separate the two realities.  As we left the examination room, Dr. H said we were doing a great job, gave me a reassuring hug and told me that he learns something new from me at every appointment…(his comment made me giggle because I had JUST had a conversation with someone about “everything happening for a reason” and how I don’t believe tragic things happen for a specific purpose but that I do believe purpose can be birthed from tragic circumstances…hmmmm, either way, it’s always helpful to keep an eye on the big picture and Dr. H’s comment was a sweet reminder of that).

So, where am I going with all this?  I have no idea…this is most definitely me externally processing but I do take comfort in the reminder that uncertainty creates room for endless possibility…I’ll keep you posted 🙂

This week has been full of work around home and more appointments but last week had something significant each day.  Here’s a week in the life of Rudy…

Monday –

Big boy Rudy waving goodbye on his way to summer school.

Tuesday –

The long-awaited family date to see Cars 3 did not disappoint! Rudy was in heaven!!!

Wednesday –

Said goodbye to Oma.

Thursday –

Rudy went on his very first playdate ALONE with some friends from school…to see Cars 3 again!

Friday –

Spent the morning in the ER…supporting Wilson who had a little mishap with his motorcycle. Rudy was quite peeved he didn’t have control of the tv remote but it was, after all, Wilson’s gig this time around.  And, YES, Rudy wore the same shirt 4 days in a row!!!!

Ha Ha!  June is wrapping up quick around here.  We’re gearing up for the 4th of July holiday and Vacation Bible School next week at our church…living in limbo doesn’t feel so bad when there’s lots of fun to be had!  Bless you friends and thank you for your prayers!


So, I’m just not sure we could have squeezed anything else into the last week and a half.  The out-of-towners have come and gone (accept for Oma who is staying one more week), Max’s weeklong celebration with his classmates is over, Olivia went to an out of town Lacrosse tournament and back, Rudy had a full week of medical appointments and Wilson made it home safe and sound from Ft. Knox, KY late last night after his month in Madagascar.  In between, there were pool parties and crazy antics and food (so much food!).  Needless to say, today is clear of any commitments so I’m staying in bed as long as possible.  😉

The months of senior activities and fun anticipation for the DP Class of 2017 culminated in last Thursdays graduation celebration…it was so fun to share the day with our out of town guests and hometown friends!



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Max with Oma and Grandma Jo.



After graduation, we hosted a house full of friends to celebrate and it was rich.  Max’s godmother, who flew in all the way from Wichita, shared some beautiful scripture and words of affirmation & blessing AND Coach Mollkoy (for whom Max TA’d this year) had a special presentation too!  Max felt well celebrated and expressed his gratitude for all the love from family and friends on more than one occasion!  Yay!  So grateful!



After all that, Rudy still had one more day of school…

We’re not quite sure what Rudy did to deserve being in the “red zone” but it was clear the last week of school that he was DONE and ready for a break. Ha Ha
Making slime with Ms. Ochoa was fun though!

Our church has an annual tradition of recognizing the graduates on “Graduation Sunday”…those promoting from 6th grade to Jr. High and from 8th grade to High School, as well as the High School and College graduates.  ‘So excited for this bunch!

Love these kids!

One of the things I love most about our church is the “team effort” that goes into the investment of our youth…this certainly was demonstrated in the comments shared with (and about) Max during the service…well done, dear friends, thank you, thank you!!

We are so grateful to our moms and KS nephews and Max’s godmother for making the effort to come all the way to California for Max!  Their presence made all the celebrating even more special for sure…well done everybody and thank you, thank you!!

My mom (Jo) and Rolf’s mom (Helga) with a quilt that was started by Jo’s mom (my grammie) and finished by Helga. LOVE IT!!! Such a gift from both moms in my life!!!
Rudy lovin’ him some cousin time with Michael and Jonathan.
Rudy and Susie-Q!
The Wichita and Overland Park Kansans bonded over late night pool parties and…
…bugging Max at work! 😉

Medical Update:

Rudy’s one-week break between the end of the school year last Friday and the start of summer school this coming Monday is almost over.  As it turned out, it was packed with routine dr. appts Monday through Thursday.  We still have neurology, cardiology and a trip to the dental clinic at UCLA coming up in a couple of weeks but we were able to check gastroenterology, orthopedics and the bi-annual visit to the heart clinic off our list this week.  The news from GI is that Rudy is losing weight and needs to bulk up a bit so an increase to his daily volume of Pediasure has been ordered.  Our appointment at UCLA’s heart clinic yesterday was exceptionally long (with a nearly hour long echo) but there isn’t any major change in Rudy’s heart function since December…a good thing!  The most surprising news this week came from the orthopedist who determined that Rudy no longer needs his braces!!!!  I didn’t see that coming AT ALL and it took me a few seconds to process what he meant.  Ha Ha  Dr. Early recommended we stop using the braces and track Rudy’s falls (an increase in falls may mean a return to the braces) but he suspects Rudy will grow in leg strength pretty quickly now that the calf muscle will be free to move and get exercised.  As a result, our day in LA yesterday included a trip to Famous Footwear for a pair of new shoes AND new sandals!!!!  Rudy is so proud!


Speaking of LA, when we finished at UCLA, we stopped for lunch in Westwood and ran into the echo technicians who conducted Rudy’s echo…guess who elbowed his way into their lunch break?


So, as always, there is much to celebrate and much to ponder.  In the meantime, we’ll continue to focus on quality time with family and friends and remember to breathe once in a while!


Memorial Day Weekend

The house was unusually quiet this weekend.  Max and Olivia left on Friday morning for their annual trek to Elev8 (youth conference) in San Diego with our church’s youth group.  Rudy has asked about them several times a day and will be excited to have them home later today.


Rolf took advantage of the near-empty house to begin the bathroom remodel.  With guests arriving soon for Max’s graduation, this project will need to be done in stages to insure we’ll have a functional  bathroom when the house is full but he got a big chunk of the work done.  Yay!

Rudy helping Rolf in the demolition phase of the project!

Rudy and I didn’t have time to lounge by the pool for very long this weekend as there was lots to celebrate in the lives of our friends…

Rudy’s 2nd grade general ed teacher, Mr. Latta, is also a musician so Rolf, Rudy and I enjoyed a rare Friday night out at a nearby microbrewery to listen to a little Johnny Cash!
Rudy definitely found his happy place when he elbowed his way in on a group of familiar faces from school. 😉
On Saturday, Rudy and I went to the grand opening of the newest Kyle’s Kitchen location in downtown Santa Barbara! We are so excited for our friends the Ferros and the success of their special restaurant concept…expansion is happening quickly as there are plans for a THIRD location to open later next year on the other side of Goleta!! Woo Hoo! Yay Kyle’s Kitchen!


Rudy got to help Kyle’s mom and sister pass out fresh baked cookies to the customers enjoying their lunch.
Rudy and part of the Ferro family! Congratulations dear friends…may your hard, hard work and heart for the special needs community be rewarded abundantly!
We left the Kyle’s grand opening early to make it in time to see a little friend’s dedication at Goleta Beach! It’s always fun to see good friends.


And, of course, a good bit of yesterday was spent watching the Indianapolis 500…one of Rudy’s favorite traditions.

I’m so grateful for this long weekend filled with things we love to do and people with whom we love to do life…I am blessed to live in my comfortable home, in a beautiful town that is part of a larger, wonderfully diverse, complex country that I love dearly.  I am grateful we set aside a day every year to remember those who gave their lives in service to our country and it’s citizens but after experiencing all that we got to experience this weekend, I’m feeling strongly that the impact of the collective sacrifice should be felt EVERY day…everyday we exercise the freedom to remodel a bathroom, start a new business, worship God on a public beach, go to school, make friends, travel, write blogs, have a family, enjoy life, etc, etc, etc…you get the idea.   So, to my fellow Americans who gave their lives while in active military duty, thank you for your part in firmly establishing our safety, freedom, and democracy!  We won’t stop being grateful.

Field Trips and More

This past week was a week full of field trips for Rudy so we were glad his day at home to rest up seemed to help him recuperate from the episode he had last weekend.  His school nurse called me on Monday to come pick him up early from school because he was ill, he stayed home from school on Tuesday and hit the ground running Wednesday on a field with his typical 2nd grade classmates to the Sea Center on Stearns Wharf.

Mesmerized by the jelly fish.
Petting the leopard shark with nurse Evelyn.
Rudy in the shark tank!
Checking out the sea stars…
…and other tide pool creatures.


I try not to dwell on comparisons too much but it is always a bit shocking to me to see how much smaller Rudy is when next to kids his age!
Rudy getting some Mr. Latta love and a high-five from a classmate!
Sandwiched in between two fun field trips was Rolf’s 50th Birthday!!!! Woo Hoo…He’s like a legit adult now.
Friday included a trip to our local bowling alley with Rudy’s special needs class!
Having fun with friends!
Rudy cheering for a classmate while waiting for his turn.
Helping teacher Tracy keep score.
Getting a little help from mom.
And this is how his week ended…falling asleep in the 7 minutes it takes to drive home from school.

We’re down to the last 13 days of school…why does it feel like EVERYBODY else is done with the school year but us?  Summer can’t come soon enough!!!

One 1/2 Way Around the World, One Close to Home.

Our week with Wilson whizzed by much too fast and now he is off on his ROTC adventure to Madagascar.  He flew to Ft. Knox early this morning and will head to Madagascar from there.  I admit I’m a bit jealous.  I turned down an opportunity to teach English on the Comoro Islands just a hop, skip and a jump away from Madagascar when I graduated from college…never did make it to that part of the world and now my son is headed there…a full circle kinda event, I guess.

On the opposite end of the spectrum, Rudy came down with a little bug over the weekend so we’ve stayed close to home the last few days.  He’s home from school today to rest up and, hopefully, kick it once and for all.  We’re down to the last three weeks of school and we all hope to finish the school year healthy and strong!

Rudy had an episode on Saturday morning that spooked us a bit. He woke up agitated, body shaking and his breathing was labored. His O2 sats were so low, we couldn’t getting a reading on the pulse oximeter. We ended up calling our nurse neighbor over to help us assess the situation. Some Tylenol and a dramatic bump in his oxygen level helped get him calm and stable. Everyone ended up in our room at one point just chatting and I couldn’t help taking a picture!!
Rudy perked up enough on Sunday to serenade our neighbor who was celebrating his 98th birthday!!!
The 8 year old celebrating the 98 year old!! Happy Birthday Norman!!
Bye, bye Wilson! Safe travels! Take lots of pictures!!

Speaking of taking pictures, I took some of Max at the beach last week for graduation…Wilson and Rudy joined us.  🙂



The countdown to graduation is ON!  🙂