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.

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!!!

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!  🙂

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.

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

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?

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!)…

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…

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!

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!

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…

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 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!!

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.

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…:)

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…

One of my favorite things about the fall season is the official school picture portrait!!! There’s just something about getting that envelope full of pictures sent home from school that excites me…it marks another milestone in the lives of our kids and marks the passage of time on our fireplace mantel. We have a lot of gorgeous photographs of our kids that I cherish…everything from the silly candid shot to the artistic (mostly thanks to Greg Lawler! Ha) but the quirky, slightly awkward school pictures we’ve collected over the years are favorites as well! I guess it’s more about the subjects than the pictures themselves 😉

This year we get to add Rudy’s first school picture portrait to the mantel! A kindergarten picture that is fast becoming a family favorite complete with an oxygen tube impression on his face , a clip-on tie that’s too heavy for his shirt and a slightly crooked, happy smile that brightens up his whole face!!! Priceless!! I LOVE IT! I love these pics…I love these kids!!

Happy Fall Everybody!

Here’s a look back at the big kids’ Kindergarten school pics…

🙂

Rudy went from “Super Star of the Week” to a weekend full of stars as we celebrated at SBRM’s “Viva la Bayou” event on Saturday and the UCLA Mattel Children’s Hospital’s “Party at the Pier” on Sunday.  It was a jam-packed weekend but it was filled with things that refresh my soul (good friends, family, hard work, hope and sunshine) so it was energy and effort well spent.  We’ve had another wicked heat wave blaze across southern California so I was a little nervous these outdoor events would be too hot for Rudy but he handled it all pretty well and we all focused on the fun to be had.  🙂  We’ve had a crazy schedule of significant experiences in the last week and a half on top of the regular family routine so it’s going to be hard to slow down and catch up on the chores I’ve let go in the last few weeks to prepare for all these special events.  It’s time to get back to real world stuff…;)

Talk about a week FULL of all kinds of fun!  Sandwiched between all the Heart Walk activity last weekend and the Santa Barbara Rescue Mission’s annual Bayou event coming up THIS Saturday, it’s Rudy’s turn to be “Super Star of the Week” THIS WEEK at school which means he gets to share a little about himself each day, he gets to be line leader each day AND sit at the front of the class during circle time, etc, etc…  Not surprisingly, Rudy is EATING IT UP, relishing being in the spotlight and LOVING the special attention from his teachers and classmates.  I’m a little nervous he’ll experience a tough “fall from grace” next week when he’s no longer Super Star of the Week but we’ll cross that bridge when we come to it.  🙂

In the midst of it all, of course,we celebrate TODAY…10-01-2014…Rudy’s 6th Birthday!  My emotions have been all over the map today but bottom line our boy is deeply loved, he’s happy, easily laughs and eagerly embraces life…any way he can.  He’s growing in independence, determination and ability.  He’s moving forward which means we’re moving forward along with him…one step at a time.  Happy Birthday Rudy…you enrich the life of our family.