Miscellaneous Fun!

Rolf made it home safely from being with his family in Alabama late on Saturday…since then we’ve been trying to settle back into the regular routine but it has been a weird week…it’s busy, lots to catch up on, we’re all tired and life feels scattered…but, there has been some random fun too:

Came home from dropping Olivia off at Volleyball practice to find the boys wrestling in the hallway…Boys!
Came home from dropping Olivia off at Volleyball practice to find the boys wrestling in the hallway…Boys!
Rudy got to celebrate ANOTHER 100 days of school at his district special ed school…more 100 day fun! 2-19-14
Rudy got to celebrate ANOTHER 100 days of school at his district special ed school…more 100 day fun! 2-19-14
Holter Monitor test 2-20-14
Holter Monitor test 2-20-14 – no word yet on the results.

We’re waiting to hear back from Dr. Harake about Rudy’s Holter Monitor test last week…I don’t expect any BAD news but I am hoping we were able to get some good data.  Normally the sticky probes stick like cement but we had an unusually warm day on the 20th causing Rudy to sweat which then caused the probes to peel off at different times throughout the 24 hour test period.  I tried to stick them back on to finish the test but we’ll have to see if it worked.  I’ve never had that happen before.  🙂

I drove Wilson up to Pismo Beach on Sunday for a school jazz band gig at the Veteran's Hall for an audience filled with vets from an era that loved to jitterbug.  The kids' renditions of "In The Mood" and "American Patrol" brought the house down.  I wanted to jitterbug so bad…I looked around the room to see if one of the old timers might dance with me.  Then, as an early bday present, Wilson came down offstage to dance during one of the songs in the set he doesn't play!  SO FUN!!!  He was a good egg to dance in front of his classmates…BEST BIRTHDAY GIFT EVER!
I drove Wilson up to Pismo Beach on Sunday for a school jazz band gig at the Veteran’s Hall for an audience filled with vets from an era that loved to jitterbug. The kids’ renditions of “In The Mood” and “American Patrol” brought the house down. I wanted to jitterbug so bad…I looked around the room to see if one of the old timers would dance with me. Then, as an early bday present, Wilson came down offstage to dance with me during one of the songs in the set where he doesn’t play! SO FUN!!! He was a good egg to dance with his mom in front of his classmates…BEST BIRTHDAY GIFT EVER! 2-23-14

Oh yeah, btw, it’s my birthday today.  48 and counting!  Grateful.

Mama's Bday dinner at The Nugget!  YUM
Mama’s Bday dinner at The Nugget! YUM

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Livy made me a homemade carrot cake from scratch with a little help from her dad…Thanks, T, for the recipe!  :) YUM
Livy made me a homemade carrot cake from scratch with a little help from her dad…Thanks, T, for the recipe! 🙂 YUM

The family is heading to an annual Make-a-Wish fundraising event tomorrow to share about Rudy’s Wish Trip to Give Kids The World…we are honored to share our experience with the Make-a-Wish Foundation and are looking forward to a special evening out together.

Speaking of Give Kids the World….we shared a few years ago about a Rudy’s Beat friend in her own battle for survival…click here and scroll down to the end of the post.  Megan and her family got to visit Give Kids The World last week and they found Rudy’s paving stone that was placed on the Avenue of Angels after our visit last year…right in front of the Castle of Miracles!!!  So cool…Thank you Megan!!

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Rudy's stone location at Give Kids The World!
Rudy’s stone location at Give Kids The World!

Remembering My Dad

Thanks to everyone for the kind messages in response to my dad’s passing. Whirlwind that the last week has been, I was so grateful for the way Trish paid tribute to him. I’ve had a chance to do my own reflection and prepared the following for the memorial service we’ll have this afternoon. Thank you for your continued prayer and concern for our family.

I’ve always found it hard to give brief answers to basic questions about ancestry. Upon hearing my name, the understandable question is usually: “Are you German?” Deeply ingrained pride demands this be corrected: “No, I’m Austrian.” Some face-saving pleasantry is then usually offered to the effect of how neat it must have been for my parents to grow up in Austria. But even this impression must be corrected as Dad was actually born and raised in China. At this point, the conversation is so far past making a long story short and the other party likely regrets they ever decided to make pleasant conversation with me. I’ve often wondered why I can’t just politely let the details go, but I’m certain it comes from Dad’s quiet pride in his journey, the family he came from and the sense of unique identity and heritage he passed on to us.

Dad was a man of discipline. He preached self-discipline to us as kids and set a remarkable (and, to most people, unattainable) example of adherence to routine. He worked diligently, maintained focus, delayed gratification, spent carefully, saved wisely and exercised regularly. He structured his life, planning days carefully in his color-coded appointment book in print that was just a few points larger than microfiche.

Love was closely associated with duty and commitment for Dad. I would not view him as adventuresome or risk-taking, yet he came to America on a boat to pursue higher education and establish himself as an engineer largely to honor the expectations of his own father. In time, his sense of duty shifted to his own wife and children. Thanks to his devotion to his profession and
his labor of love to build and maintain a home in the woods of New Jersey we were well-provided for, and then some.

Dad had a remarkable career as an engineer. In my earliest recollection, I found this impressive but I wondered why he always left the house in a coat and tie if he was going to drive trains. His explanation that he carried his cap in his briefcase and showered to get the coal soot off him before he came home was enough to string me along for awhile. While very few of us have the knowledge to understand specifically what he did, we daily benefit from the technology he and his team developed at Bell Labs in areas such as satellite communication, fiber optics and silicon wafers. His cutting-edge work was worthy of at least seven patents and significant renown in the engineering world, which became very apparent to me when my last name was recognized by more than one professor in entry-level engineering courses at Stanford. This was soon followed by their realization that some apples fall far from the tree as they watched me founder valiantly amidst basic concepts until I finally admitted defeat and beat a hasty retreat to the humanities.

Being an engineer wasn’t just what Dad did for a living–it defined a large part of his identity. “Exhibit A” would be the pocket protector filled with colored pencils (and later, pens) he still wore years into his retirement. Dad read things–sometimes even junk mail–with an engineer’s scrutiny; underlining and commenting in the margins. Around the house, he demonstrated that if a little engineering could make life easier, a lot might create something spectacular…but it also might mean you won’t get the treehouse you asked for when you were eight until you’re a sophomore in high school (but no other treehouse in the neighborhood had a four-point floating suspension system secured by aircraft cables).

Dad also demonstrated that great engineering successes come only with some near-tragic failures. While in our household it was long unthinkable that any American-made car could be superior to the Volkswagens we drove, it was impossible to overlook the non-existent heat air-cooled engines provided during East Coast winters. Therefore our spirits soared as we embarked on a ski vacation with Dad’s engineered solution in full operation. With the weather well below freezing outside, the propane camping heater made the inside downright balmy. Fortunately, the fumes from the melting plastic upholstery alerted us to a problem before the carbon monoxide overcame us all.

Dad was thoughful–in the literal sense. He was certainly very conscientious but to view the term literally, he was “full of thoughts”. His mind never stopped working and it would not be overstating thing to describe him as a genius. He would think things through carefully and then review his thinking repeatedly. He never spoke “off the cuff” but chose words carefully–even if this often meant others had to wait uncomfortably long for him to speak. He held opinions strongly, but was not one to have an opinion about everything. He simply would not comment on things he did not have knowledge of. He was completely confident in the expertise he held but also unapologetically aware that this had limits.

He carried himself throughout his life with European politeness and formality. As unthinkable as it might have been to us as teenagers, Dad demonstrated that you can navigate life and survive quite well without remaining current on popular culture or knowing who every celebrity was. Dad was confident in who he was and didn’t demonstrate any need to conform to what we might have wanted him to be. On a few occasions where I might have approached him too informally, he made it clear that he wasn’t primarily my friend or buddy. He was my dad. This called nothing into question about his love, but simply made it clear that it was not subject to anything within my control.

As driven and focused as he was in his career, I was grateful for the way Dad softened with age. While it was challenging to watch, he maintained a sense of pleasant dignity while his abilities were progressively diminished by Parkinsons. He did not get embittered or angry. He became more able to freely express affection and affirmation than at earlier points in his life. While I wish my kids would have seen the vigorous man who cleared his own wooded homesite with a chainsaw and poured a huge concrete patio around it with cement he mixed and hauled by himself, I’m grateful that they saw his sweetness, contentedness and care.

Over 87 years, Dad led and honorable life. Beyond rich life experiences and professional accomplishments, this is the greatest legacy he leaves and what I hope can be said about my life. He was a person of character. He was faithful to his wife. Everything he undertook was driven by his commitment to honor and provide the family that he loved. I’m grateful for his life and unspeakably grateful to be his son.Opa 2013

Mourning Opa…

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We are grieving the loss of Rolf’s dad today.  After a long battle with Parkinsons, Franz had a stroke 10 days ago and passed away yesterday (Monday), February 17, 2014…he was 87.  I am grateful that Rolf was able to fly out Sunday and arrive in Auburn in time to be with his family and spend time at his dad’s side before he passed.  Franz will be missed.  He was a good man who cared for his family, was passionate about his life’s work as an engineer, made significant professional contributions in his field and modeled commitment throughout his life to his wife of 52 years, his work, his four children and later to his 15 grandchildren.

I loved my father-in-law  and appreciated his presence in my life.  I’m grateful for the ways he welcomed me into his family and demonstrated his care and concern for my family.   Franz was a man of contradictions which is what made him so interesting to me…at first glance, I don’t think anyone would have described him as a huge risk-taker…he was conservative with his resources, careful in his choices and methodical in his approach to life and yet he made some pretty bold moves in his life that included leaving his family in China and Europe as a young college student to establish a new life in America – pretty risky if you ask me!

Franz could also be described as extremely intelligent – he had an engineer’s mind that could easily digest all things technical.   If you asked him a simple question, more often than not his answer would be filled with references to physics and other branches of science you didn’t even know applied! 🙂  Opa may have had the mind of an engineer but he also had the hand of an artist and he delighted us in his later years with his renderings of familiar places and faces (Rolf’s roses were a favorite subject during visits to Goleta).

Opa's sketch of Max in 2001.
Opa’s sketch of Max in 2001.

I knew Franz to be a man of many words…if you got him talking about his fascinating family history, he could spin a detailed yarn for hours at the dinner table…and yet, I also knew him to be a man of few words…he chose his words carefully and was thoughtful (maybe even sparing) in his affirmation…which made notes like this one even more meaningful:

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Losing Opa makes me miss my Dad a little more today too.  I am blessed to have had them both in my life.

Schlaf gut Opa!  Schlaf in himmlischer Ruh…Liebe, Trish

Opa getting a little Rudy-love.
Opa getting a little Rudy-love.

“Merciful Jesus, Lamb of God,  Grant him rest…everlasting rest.”

(an abbreviated translation of “Pie Jesu”…my version below recorded for the service)

Happy Valentine’s Day 2014

Rudy got to celebrate Valentines with BOTH of his classroom friends but I only got a picture with one…what a fun, full day it was!
Rudy got to celebrate Valentines with BOTH of his classrooms but I only got a picture with one…what a fun, full day it was!
Valentines are super fun!
Valentines are super fun!
Great minds think alike…Rudy and his nurse, Sara, brought the exact same Valentine's to share with the class!!!  ha ha
Great minds think alike…Rudy and his nurse, Sara, brought the exact same Valentine’s to share with the class!!! ha ha

It wouldn’t be Valentine’s without our traditional greeting…Rudy joined in for the first time and performed like a pro!    We dedicate this 2014 version to Opa and Oma!  Feel better soon Opa…we love you both!

(Click here for 2011 version and 2012 version)

Happy Valentine’s dear Ones ❤

Congenital Heart Defect Awareness Week

We’re right in the middle of CHD Awareness Week (February 7-14) … I think it’s sweet how it leads up to the biggest HEART day of the year!!!  Rudy, Olivia and I enjoyed kicking off the week with a little mini-reunion that included Logan’s mom, Rayme, Nurse Joyce (who kept a watchful eye over Rudy and Logan when they were in the hospital together the fall of 2008)  and Jeni Busta – CHD survivor (who, by the way, was a patient of Joyce’s 28 years ago!!!).  It’s always an encouragement to be with these friends and I’m grateful for our special bond.

Rudy was all smiles with Jeni, Joyce and Rayme!
Rudy was all smiles on Feb. 7th with Jeni, Joyce and Rayme!
Not that it has anything to do with CHD Awareness Week but Rudy got to see Max's JV Hockey Team win the league championship on Saturday in a double-overtime, nail-biting finish!!
Not that it has anything to do with CHD Awareness Week but Rudy got to see Max’s JV Hockey Team win the league championship on Saturday in a double-overtime, nail-biting finish!!  Very exciting!

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Rudy's "official" Rifton walker doesn't fit through the door frames in our house so we got him a "grown up" walker that he can easily navigate inside!!  He's quick to pull up and go, go, go.  There may be a few more nicks in our baseboards before he masters it but I kinda like the "distressed" look in woodwork.  Ha Ha
Rudy’s “official” Rifton walker doesn’t fit through the door frames in our house so we got him a “grown up” walker that he can easily navigate inside!! He’s quick to pull up and go, go, go. There may be a few more nicks in our baseboards before he masters it but I kinda like the “distressed” look in woodwork anyway. Ha Ha

It’s kind of a fun week…lots of exciting Olympic coverage to watch…a 4-day weekend to look forward to….AND Valentine’s Day is just around the corner!!!  Happy Heart Week dear friends!  ‘Wishing you love and happiness…

 

 

 

Cardiology or Meteorology?

This sure has been a crazy winter…polar vortexes, record high temps and drought in southern California, record low temps and crazy amounts of snow everywhere else…with all the talk of high and low pressure systems on the daily weather report in recent weeks, my ears perked up today when Dr. Harake started talking about high and low pressure systems in relation to Rudy’s heart!  Wait!  What branch of science are we talking about?

We had a routine check-in with Dr. Harake and talked a good bit about our consult with Dr. Alejos at the pediatric cardiomyopathy/transplant clinic at UCLA last month.  Although Dr. Harake is in regular communication with the team down at UCLA, it’s important for us to be in communication with them as well and Dr. Harake encourages it…he just wants to make sure we’re all on the same page and not missing something.  It’s pretty clear to us what Rudy’s options (or lack of options) are at this point and we agree with Dr. Harake that the best course of action is the one with the least risk (i.e. when the risk of NOT doing something becomes greater than the risk of doing something, we move forward…until then we stay put).

With that said, our discussion today centered on where Rudy is ultimately headed.  Dr. Harake likened what is going on in Rudy’s heart to an accelerated  aging process…it’s working hard and, as a result, it’s aging fast.  Rudy’s little right side of his heart was intended to pump blood to his lungs – a LOW PRESSURE SYSTEM – but instead we’re asking it to pump blood right now to his lungs AND his body which is a HIGH PRESSURE SYSTEM!  The extra pressure is and will continue to take it’s toll on the rest of Rudy’s body as well as his heart.  His other major organs are, like his heart, enlarged and will be problematic over time…an indication of congestive heart failure.  Rudy’s heart rate was a little low today so Dr. Harake ordered another Holter monitor test…the last Holter we did was over a year ago so it makes sense to do it again anyway.  We’ll have the small monitor placed on Feb. 18th for the 24 hour test so he can wear it to school and therapy that day…it will be great to get data during his most active times.   I suspect all will check out okay.  If the low heart rate and enlarged organs were, indeed, an indication of heart failure, we expect his demeanor and stamina would change as well which certainly isn’t the case so it feels like we’re really in  season of monitoring and establishing baseline data with all these tests.    Dr. Harake is going to talk with Dr. Dan and discuss whether or not to get a heart cath on the calendar.  Other than that, the plan is to lay low… to wait and watch.  Thanks for waiting and watching with us!

Warm hugs and love to all our friends and family buried in today’s snowfall…stay warm!!

100 Day Celebration

February 3, 2014 - 100 Days of School
February 3, 2014 – 100 Days of School

 

It just so happened that the 100th day of school celebration at La Patera was today (Monday) so Rudy got to enjoy the special festivities which included a parade around school…reminds me of another 100-day celebration Rudy participated in!  Remember this?   CLICK HERE

Enjoying typical milestones. 🙂