The Older I Get…

December 16, 2014 by

… the simpler my holiday preparations become… the closer I feel to family and friends as I write my Christmas cards… the more I cherish the oldest ornaments… the more fondly I remember Christmases past… the longer I hold on to a holiday hug… the more I realize Christmas is a matter of the heart… the tighter my throat gets when I sing “Silent Night”… the more I enjoy giving than receiving… the more I try to see Christmas through the eyes of a child… the longer I sit at night in the glow of the Christmas tree… the more wondrously beautiful the Christmas story is… the deeper my awe at God’s infinite love… the More I Love Christmas!

This poem has made it’s way around on the internet the past few years and I was reminded of it again recently when a friend included it in her Christmas Card.  I don’t mean to be sappy or overly sentimental but it’s SO TRUE and it becomes more true with each year that passes.  The older I get, the more I love Christmas…and all that stuff in between!!  :)

The fact that time is marching on has been more apparent this year than ever before with the big kids busy off doing all kinds of fun stuff on their own.  We were hard pressed to find a time this past weekend when we could walk over to Stow House together to see Santa.  Livy went with us but the line to see Santa was so long, she had to leave for a soccer clinic before we made much progress!  Ha Ha  All the big kids are in a final hard push this week and looking forward to their break from school.

Rudy came down with chest congestion late last week which turned into a pretty deep cough over the weekend.  We saw Dr. Harake yesterday and he wants Rudy to see his pediatrician (we have an appointment this morning) to get on top of it before it becomes a larger problem. Rudy’s 02 saturation normally reads in the high 70s- low 80s but was in the mid-60s during our appt. with Dr. Harake so we’ve bumped up his 02 flow a bit…he’s happy and not distressed so we’re having a couple of sleepy pajama days at home while we wait for this bug to run it’s course. ‘Praying for a speedy and COMPLETE recovery!!

Waiting in line to see Santa!

Waiting in line to see Santa!

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Merry Christmas from Santa and Rudy!

Merry Christmas from Santa and Rudy!

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Can this smile get any bigger?

Can this smile get any bigger?

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Yep!

Christmas Is Coming!

December 12, 2014 by

With all the hustle and bustle on the streets and in the stores, with more and more lights popping up in our neighborhood, with Christmas music being freely played around the house (emphasis on “freely” since I have to secretly listen to it the rest of the year in my tyrannical household) and the kids cramming for tests and projects before their school break, Christmas must be coming!

The past ten days have also been filled with the start of mid-week Advent services at out church, the annual Santa Barbara Holiday Parade, a few Silver By Trish jewelry shows, an art lesson at Bethel House (SBRM’s women’s recovery home}, the BH Christmas tea hosted by the auxiliary, the SBRM Board Christmas celebration and a stop by our neighborhood fire station to share some holiday treats!  All such fun and highly anticipated every year but overshadowed this year by our heavy hearts for the Nelson’s.  Rolf, Wilson, Olivia, Rudy and I were blessed to attend Moriah’s memorial service in San Jose last Saturday.      (Max missed out on the family road trip due to his hockey game in Santa Maria.)  It was a quick trip there and back…a LONG day in the car for just a couple of hours in San Jose but it was very much worth it…it was a precious time of tears, celebration, hugs.  Please continue to pray for this sweet young family as they grieve and face excruciating adjustments in their day to day life.  Here is their blog – Moments With Moriah.

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Rudy and Moriah's Dad Justin

Rudy and Moriah’s Dad Justin

A hug with Moriah's Mom Victoria.

A hug with Moriah’s Mom Victoria.

It seems like with every loss, the filter through which we view and experience life is revised…and that’s a good thing.  I was struck with just how many losses we’ve seen in our circle this year as I made my way through the Christmas Card list from last year.  I know that’s just the reality as you get older but there were definitely too many this year…dear Opa and friends young & old. ‘Praying for all those who are navigating their first Christmas without their loved one!!!

Greg Lawler captured a big hug at home.

Greg Lawler captured a pile up at home during one of my jewelry shows.

A visit to our neighborhood fire station to drop off some treats led to a turn in the engineer's seat!!  Woo Hoo!

A visit to our neighborhood fire station to drop off some treats led to a turn in the engineer’s seat!! Woo Hoo!

Thanks Fireman Matt!

Thanks Fireman Matt!

Christmas treats from Austria…thanks Oma and Tante Andi! ;)

Christmas treats from Austria…thanks Oma and Tante Andi! ;)

Your never too old to enjoy a Kinder Egg!

You’re never too old to enjoy a Kinder Egg!

We’re looking forward to Santa coming to nearby Stow House this weekend for our town’s annual Christmas party and to the kids’ last week of school before winter break.  They have a week filled with secret santa exchanges (Olivia), Holiday Package performances (Wilson and Max) and lots of extra fun in room KA i.e. building gingerbread houses with big buddies (Rudy)!!  ‘Wishing you all happy preparations too!  :)

Mourning A Very Special Heart Hero

December 2, 2014 by

Shortly after Rudy’s diagnosis, we connected with three families whose heart babies were all born in 2008…Moriah Nelson who was born in January, Katie Manning in May, Logan Elliott in August and then there was our Rudy in October.  Each of these families grew to become an important part of this journey for our family…friendships born out of heartbreaking circumstances but were encouraging and inspiring and supportive on such deep levels.  Sadly, Katie passed away in November of 2008, Logan passed away in October 2009 and we just got word this evening that Moriah passed away today (December 1) after a two week battle with endocarditis (infection in the heart) and ultimately septic shock.  Our hearts are broken.

Moriah was a beautiful girl with an infectious smile and a powerfully determined spirit.  The miracle that was her life inspired so many and truly glorified God with every breath.  The strength and faith of her parents, Justin and Victoria, blows my mind.  They are living my nightmare…there are no words!  Please join us in praying for this precious family as they navigate through their loss and grief…May God engulf them with His healing presence and surround them with His protective love.

Sweet hearts…literally!

Sweet hearts…literally!  Rudy and Moriah in November 2013

a little Moriah love...

a little Moriah love…

Precious!

Precious! Rudy and Moriah in August 2012

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2012

Love you Moriah.  Your life means a great deal to our family…always will.

Happy Thanksgiving 2014

November 27, 2014 by

The kids have had a fun break from school so far this week and the first half of the week was made even more fun by a visit from cousin Heather. She’s a freshman at Stanford this year and came down to catch up on some sleep, homework and to hang with us. ;) Our families have lived on opposite sides of the world and then the states the kids’ lifetime so it’s really fun to have Heather in California for the next few years.  Yay!  Go Cardinal, right Heather?

Cousin Heather fits right in with the Geyling craziness!

Cousin Heather fits right in with the Geyling craziness!

We’re looking forward to a lazy day at home today and Thanksgiving dinner with friends later this afternoon.  We wish you all, our dear family and friends, a truly happy Thanksgiving celebration.  You’re on the top of our “Things We’re Thankful For” list for sure!  God bless you today and throughout the fun holiday season ahead  :)

Love and smiles from the Geylings  (thanks to Greg Lawler!)…

One, Two, Three "Happy Thanksgiving!!"

One, Two, Three “Happy Thanksgiving!!”

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"Come on Rudy!  It's time to take a family picture.  Come back!"

“Come on Rudy! It’s time to take a family picture. Come back!”

A favorite candid shot during a family photo shoot at SBCC.

A favorite candid shot during a family photo shoot at SBCC.

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Mama's favorite!

Mama’s favorite!

Speaking of Greg Lawler…he came to DP’s Homecoming game back in October and took pictures during halftime.  He sent us his pics this week and they’re so fun, we just had to share a couple of ‘em…

Looking cool as a cucumber!

Looking cool as a cucumber…

…and looking quite presidential!  ha ha

…and looking quite presidential! ha ha

Natalie's crowing moment!  LOVE their expressions…  Ha Ha

Natalie’s crowing moment! LOVE their expressions… Ha Ha

Healthy Smile!

November 18, 2014 by

Our boy who has a smile that takes up half his face had another positive check up with the UCLA dental clinic yesterday…no sign of decay, the calculus (hardened plaque) that has built up is still on the surface of his teeth providing a protective barrier and NOT along his gums which would be bad AND he got a new Lightening McQueen toothbrush!!!  Woo Hoo  I’m so grateful for his good oral health as this will be crucial should he become a heart transplant candidate down the line.  Next month (Dec. 18th, I think) we head back down to UCLA for a check-in at the heart clinic (routine 6 month appt).  Busy season!

Rudy asked that Mickey come along too…he was all smiles when Mickey got buckled in and ready to go!!

Rudy asked that Mickey come along too…he was all smiles when Mickey got buckled in and was ready to go!!

Remembering a Heart Hero

November 10, 2014 by

Longtime Rudy’s Beat readers will remember heart hero Katie Manning…she was born with HLHS just 5 months before Rudy and her blog was one of the first Rolf discovered while searching the internet after Rudy’s diagnosis.  Her parents became a source of great encouragement and friendship as we engaged in epic battles alongside our babies on opposite sides of the country.  Katie lost her battle with HLHS 6 years ago today…November 9, 2008.  It was a loss we felt deeply and her tragically short life impacts me still!!!  I think of her often.

In the years since Katie’s death, her parents Vickie and Alan had 2 beautiful boys and started a non-profit in Katie’s memory called “Kisses from Katie” – a wonderful organization that seeks to provide a wide range of resources to critically ill children, their families and caregivers.  Every year in November Kisses from Katie hosts an annual fundraiser called “A Night To Remember” and the Mannings invited us to share our family’s story this year.  Since getting our family to CT is not possible, we opted to send a video instead.  Granted, our attempt to produce a video presentation is pretty amateur but we’re hoping it communicates our family’s heart and gives the KfK donors a glimpse into a family’s life with a critically ill child.

Just two months after Katie’s death, Vickie and Alan visited Los Angeles and took time to visit us and Rudy in the hospital at UCLA – such a brave thing to do in the wake of their profound loss and grief.  Although it was our first face-to-face meeting, there was an instant bond among us that made it feel like we were long lost friends.  One of the many gifts of this journey.  :)  We send our love to you Manning Family!  We’re thinking of you today, remembering your precious Katie and praying for a successful Night To Remember on the 15th!

“Special” Anniversary

November 8, 2014 by

Yesterday was Rolf’s and my 22nd wedding anniversary…it was a typical day in the Geyling household (a.k.a. too busy to celebrate) so we have an anniversary date yet to enjoy but yesterday was made extra special by the Special Olympics!!  Rudy and his classmates got to participate in the annual Special Olympics field day in our town.  Seventeen schools from the Carpenteria, Santa Barbara and Goleta school districts with kids from K-12th grade came together for a morning of fun and games!  :)

With Nurse Sara and I on either side for support, Rudy enthusiastically got out of his chair and was ready to run UNTIL the actual soccer event that his class was assigned to began.  With the first blow of the referee’s whistle, Rudy shifted his weight, leaned back into his rear and wouldn’t bear any weight when Sara and I tried to right him.  He did, however, make an impressive show of coordinated mobility when attempting to leave the field (!)…once again doing life on his terms.  Granted, it was another UNSEASONABLY HOT day and it was crowded and a little chaotic but Rudy had fun nonetheless and it was a special day for all.  At one point, Sara and I were sitting with Rudy on the sidelines and I watched as all these amazing kids played soccer with parents and their dedicated  teachers & aides  playing alongside them (directing their every step in some cases) and I was overwhelmed, once again, by the truly special community the special needs crowd is.  Rich, rich, rich stuff!  LOVE the Special Olympics, love these kids…love our funny boy!

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Rudy is all smiles on the sideline!!

Rudy is all smiles on the sideline!!

Let the games begin!

Let the games begin!

Rudy's passive aggressive refusal to play ;)

Rudy’s passive aggressive refusal to play ;)…

…and yet he still emerges a WINNER!!!  Ha ha

…and yet he still emerges a WINNER!!! Ha ha

Happy Halloween 2014

October 31, 2014 by

The Geyling family is scattered in many different directions this Halloween but we send our best wishes from all the little corners of our world to yours!  :)  Happy Halloween!!!

Elmo and Emogi were in da house today!

Elmo and Emogi were in da house today!

Oh yeah, Cookie Monster showed up too!!!

Oh yeah, Cookie Monster showed up too!!!

Nurse Sara was a good egg and wore Rudy's companion costume for the school costume parade!!!  Yay Nurse Sara!

Nurse Sara was a good egg and wore Rudy’s companion costume for the school costume parade!!! Yay Nurse Sara!

Rudy and his school buddy Harrison went trick-or-treating together at a local shopping center...fun times!

Rudy and his school buddy Harrison went trick-or-treating together at a local shopping center…fun times!

Bugs-be-gone!

October 28, 2014 by

Well, the flu and bug season is upon us once again and it feels particularly threatening this year with the outbreak of pertussis and enteroviruses here in Santa Barbara.  I’m not one to get too caught up in fear over stuff like this but I’m definitely feeling the need to be aware and take extra precautions…i.e. time to break out the Costco size jug of hand sanitizer and wash, wash, wash those hands!!!!  :)  Rudy came home from school sick two weeks ago.  Nurse Sara was on top of things and recognized the symptoms early so I was able to get him home and on a regimen of Tylenol/Advil just as his fever started to spike.  He battled a high fever and the accompanying symptoms for a couple of days but was able to fight it off quickly and was back in school on day 3.  Unfortunately, I caught the same bug and was down for three days as well.  I asked Rudy’s doctors if there’s anything more we can do this winter to keep him safe and their response was unanimous…keep him out of the ER.  :)  So, as we take these extra precautions and pray for a bug-free winter, we trust Rudy will remain safe and healthy this crazy bug season!!

Rudy and I may have been down for a few days but the fun of the past couple of weeks didn’t stop…

Wilson's godparents Bob & Kathy and their daughter and son-in-law joined us for Wilson's LAST home football game to watch him rock the drum line!  And so the "lasts" of Wilson's senior year begins!!!  How is this possible?

Wilson’s godparents Bob & Kathy and their daughter and son-in-law joined us for Wilson’s LAST home football game to watch him rock the drum line! And so, the “lasts” of Wilson’s senior year begin!!! How is this possible?

It’s fun to watch Rudy’s world expand…he’s meeting new friends (at school for example) and enjoying experiences & making memories without the family by his side.  It’s becoming more and more common to be out in public with Rudy and run into BFFs that we’ve never met!  Ha Ha  He’s definitely more popular than we are.  ;)

Rudy's class got to go to the local pumpkin patch on Friday with their 6th grade big buddies!  Rudy was well taken care of!  :)  So fun!!!

Rudy’s class got to go to the local pumpkin patch on Friday with their 6th grade big buddies! Rudy was well taken care of! :) So fun!!!

Big buddy Natalie and Nurse Sara helping Rudy pick out a pumpkin!!

Big buddy Natalie and Nurse Sara helping Rudy pick out a pumpkin!!

Rudy had a very special opportunity to be honorary captain at the SB City College football game this past weekend.  We met the team and shared Rudy’s story on Friday night and then attended the game on Saturday to promote awareness of Congenital Heart Defects (CHDs) and highlight the work of Camp del Corazon (www.campdelcorazon.org)!!!  Rudy was a little overwhelmed at first (football players are ALOT bigger in person than on t.v.! ha ha) but warmed up to all the fanfare and found a comfortable spot to watch on the sideline.  Yay Vaqueros!!

Running a play with Coach Moropoulos for a TD!!!!

Running a play with Coach Moropoulos for a TD at Friday’s practice!!!!

High-5 Coach!

High-5 Coach!

Rudy and Olivia were also honorary members of the cheer squad!!! :)

Rudy and Olivia were also honorary members of the cheer squad!!! :)

:)

:)

Where's Rudy? Can you see him welcoming the players onto the field?

Where’s Rudy? Can you see him welcoming the players onto the field?

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Overseeing the coin toss!

Overseeing the coin toss!

Football is serious business!  :)

Football is serious business! :)

Rudy liked his spot on the sideline...

Rudy liked his spot on the sideline…

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Then on Sunday, we took Rudy to the annual “Monster Ball” celebration with the UCSB Gaucho baseball team!  It’s a sweet gathering of special needs kids in our community with games, snow cones, popcorn and, of course, candy!  Rudy ran into a couple of buddies from his class last year and, once again, it was fun to experience a growing sense of community in Rudy’s expanding world.

From football to baseball with the UCSB Gauchos!

From football to baseball with the UCSB Gauchos!

Rudy getting a few pointers on catching and ...

Rudy getting a few pointers on catching and …

…pitching!

…pitching!

But the BIG BALLS were definitely Rudy's favorite!

But the BIG BALLS were definitely Rudy’s favorite!

Even with all the extra special activities in Rudy’s schedule this past week, his all time favorite moments remain those he spent at home with the big sibs…:)

A rare quiet moment at home...

A rare quiet moment at home…

…wait a minute...

…wait a minute…

…ok, not so quiet moment at home. ;)

…ok, not so quiet moment at home. ;)

Taking Risks

October 13, 2014 by

I don’t consider myself a big risk taker.  I’ve never had a huge desire to go skydiving or cliff jumping,  I’m too cheap to gamble and I’m too practical to not “play it safe” in most areas of my life.  As a result, I was struck by a quick interaction I had with Dr. Dan after Rudy’s heart cath back in July that has left me pondering what it means to take risks in life.

You may recall that it was deemed necessary during Rudy’s last heart cath to attempt to place stents in Rudy’s aorta…a somewhat risky procedure as Drs. Dan and Harake needed to get the large stents to his aorta through the only open artery Rudy has left in his groin.  There was much discussion during pre-op about saving the femoral artery by pursuing surgical options to gain access to the aorta instead.  There was more discussion with Dr. Dan by phone from the cath lab as well as a consultation with Rudy’s heart surgeon during the procedure that resulted in a unanimous decision to go for it through the groin.  We were relieved when the procedure was over and very excited that it was successful.  While Rudy was getting settled in recovery, Dr. Dan met with us to discuss the details of the procedure and brief us on where things stood, etc.  We were all pretty giddy by the outcome and as we got up to leave and get back to Rudy I said “Congratulations Dr. Dan.  You did it!  Well done.”…without hesitation he said (something like/not a direct quote) “No, you’re the ones to be congratulated!  You were willing to take a big risk and you gave us your consent.”.

Risk-takers?  Us?  I guess it’s all in how you look at it because it sure didn’t feel like we were the ones taking a risk…it felt more like, for Rudy’s sake, we had no choice.  BIG leaps of faith sure don’t seem risky when you feel you don’t have any other options and, in looking back, there sure haven’t been many options in our journey with Rudy.  I’ve mentioned it before but at every critical crossroads (especially in those early months), we never really had options in treatment…the road was laid out for us one step at a time as Rudy’s body dictated the direction we journeyed and, when needed, we gave consent for treatment when the risk of not doing something became greater than the risk involved in the procedures themselves…pretty straight forward…harrowing but straight forward.

Believe me, I’d jump out of a plane, dive head first off a cliff or place a big fat bet on a blackjack table risking millions in a heartbeat if it would somehow change the course we’re on with Rudy.  We saw Dr. Harake today for Rudy’s routine echocardiogram.  All the activities that fill our family’s crazy calendar in the weeks between appts with Dr. Harake are such a fun and healthy distraction from Rudy’s reality and I find the cardiology check-ins leave me feeling a little raw.  A strange juxtaposition as I really appreciate talking with Dr. Harake and having Rudy monitored so closely every two months but I do walk away reminded that Rudy’s heart is in a constant process of failing…the constant dull ache in my heart resurfaces and the burden feels a little bit heavier.  I’m grateful, though, that Rudy is managing it all well and thriving…grateful for the respite of fun in between the reality checkpoints and so grateful Rudy is in good hands.  Rolf and I may very well be taking risks on Rudy’s behalf as we try to navigate this crazy course but I’m so profoundly grateful that we’re not shouldering the burden alone…Rudy is surrounded by an army of friends and family who pray, a host of gifted medical professionals who skillfully treat and the God of hope who sustains, strengthens and grants peace in the midst of it all!   I might be a little weepy tonight but I’m eager to discover what fun distractions tomorrow will bring.  :)  Thanks for praying dear ones!

Here are a few of the rich distractions from last week…

Woo Hoo!  Maxo passed his  permit test at the DMV!!

Woo Hoo! Maxo passed his permit test at the DMV!!

Sadly, Rudy's battery operated cool hog died recently but was replaced with his new birthday present!!  A Go-Glider bike…he's quickly getting the hang of it!  :)

Sadly, Rudy’s cool, battery operated hog died recently so we replaced it with his new birthday present!! A Go-Glider bike…he’s quickly getting the hang of it! :)

"Friday Night Lights" - Geyling Style!  Rudy and Rolf at DP's Homecoming Football Game...

“Friday Night Lights” – Geyling Style! Rudy and Rolf at DP’s Homecoming Football Game…

Wilson was homecoming royalty at Friday's game - one of the nominated princes!

Wilson was homecoming royalty at Friday’s game – one of the nominated princes!

Crowning of the Queen!!

Crowning of the Queen!!

The princess with whom he was paired (and good friend Natalie) was crowned Homecoming Queen.  So fun!!

The princess with whom he was paired (and good friend Natalie) was crowned Homecoming Queen. So fun!!

Homecoming fun continued on Saturday night with a pre-dance photo op at the beach with Max & friends!

Homecoming fun continued on Saturday night with a pre-dance photo op at the beach with Max & friends!

After a quick dinner for the rest of us, Olivia babysat Rudy all by herself so Rolf and I could go to the dance and escort Wilson during the crowning of the king ceremony!  She bathed him, g-tube fed him and gave him his meds!! Well done Liv!!!

After a quick dinner for the rest of us, Olivia babysat Rudy all by herself so Rolf and I could go to the dance and escort Wilson during the crowning of the king ceremony! She bathed him, g-tube fed him and gave him his meds!! Well done Liv!!!

Lots more fun than my own Homecoming!  Ha Ha  :)

Lots more fun than my own Homecoming! Ha Ha :)


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