Clinton Rudolf Geyling (10/1/2008-7/25/2017)

Beloved son, brother, grandson, nephew, cousin, friend, student, robot and pig, our Rudy’s joyful and miraculous journey with us has come to an end. 

Even knowing that he would face enormous challenges before he was born didn’t prepare us for the magnitude of the battle that lay ahead. While acute medical issues were ever-present in his life, Rudy will be remembered more by his ability to overcome limitations and embrace life with joy and abandon. Against a backdrop of uncertainty, heartbreak and occasional terror, Rudy’s life gave us glimpses of God’s goodness and beauty we never conceived this world could hold. 

Rudy leaves behind a family that loved him deeply: parents, Rolf and Trish, the siblings he adored, Wilson, Max and Olivia, grandmothers JoAn Wilson (Lawrence, KS) and Helga Geyling (Auburn, AL) and numerous aunts, uncles, cousins and extended family across the U.S. and Europe. 

One could live 100 years and not experience the depth of love Rudy received in eight and a half years. We are grateful for people near and far who poured such incredible love into Rudy including: the family of Coast Community Church of the Nazarene, Mountain View School and dedicated professionals in the Goleta and SB County school districts, gifted doctors and compassionate medical providers in Santa Barbara and at UCLA Mattel Children’s Hospital, the caring community of the Santa Barbara Rescue Mission, our courageous cadre of special needs families and countless neighbors, friends, blog readers and even perfect strangers–all of whom discovered that even the simplest care extended to him was reciprocated with an uncannily disproportionate outpouring of his unique brand of Rudy-love. 

Viewing and visitation will be Sunday August 6th from 3-7pm at Coast Community Church of the Nazarene (4973 Via Los Santos, Santa Barbara, CA 93111). Funeral service will be on Monday August 7th, 11am at Living Faith Church (4597 Hollister Avenue, Santa Barbara, CA 93110–carpooling recommended). Burial and family receiving immediately to follow the service at Goleta Cemetery (44 S San Antonio Rd, Santa Barbara, CA 93110). All are welcome wearing bright colors, especially Rudy blue (aqua blue).

Memorial donations in Rudy’s honor can be made to the Santa Barbara Rescue Mission (535 E. Yanonali, Santa Barbara, CA, 93103), a very special place to Rudy and our family. 

Something I want to remember

Dear friends,

So much to feel and so much to sort through in our heads and hearts. Much as I want to start this off with assurances that we’re all right, that’d be lying. We are crushed and aching. Most accurate to say that we have some “OK moments”. We are grateful to be together as a family and with extended family.

We’ve so appreciated all the posts and messages–more than we could ever respond to. Such care for our family and a testament of the love that marked Rudy’s life.

As I’ve got a moment where I feel clear-headed enough to write, I want to remind myself of the beauty of Rudy’s last moments. The long-awaited family adventure driving across the southwest to Kansas. In his trademark relentlessness, for weeks there was the daily barrage of “I go Grandma’s house now?” several times an hour.

Travel day started with church, where Rudy felt so safe and loved. He chose to go sit with some teen boys. Having gotten the usual “Go away, Dad!” I sat by myself while the musically talented members of the family (everyone else) led worship. Was so touched to get glimpses across several rows of attentive pats on his back, kids familiar enough with his O2 setup to be adjusting tubes and keeping it from getting tangled, whispers and gestures to keep him mostly quiet.

Then the van adventure was on. Time together seeing new places, laughing and dozing in the van. Deploying in and out of rest stops and hotels–with the rotating care for Rudy that’s just been part of life for our family.

We didn’t know Monday was going to be our last day with Rudy, but so glad it turned out the way it did. At our quick stop to see a corner in Winslow, AZ, Rudy was giddy to pick out a shiny blue truck. As the clerk picked up on his enthusiasm for Cars and Lightning McQueen she gave us directions to the Wigwam Hotel up the interstate in Holbrook–the inspiration for the movie’s Cozy Cone Motel.

Even as it was happening, I knew I’d never forget it. Our little boy squealing as he scurried around the muddy gravel parking lot of the kitschy little place with its eclectic assortment of cars. Many of them didn’t appear to run and most barely looked anything like the movie characters but that didn’t stop his identifying them as such. “Look! Hudson! Doc! Sarge! Fillmore! Ramon! Mater!”

He would run himself breathless, ask to be carried and just as quickly demand to walk again. A maid even let him go inside one of the rooms to check it out. Heard his newest expression “I’m so excited!!!” many times. The big sibs entered into the experience like they always do, taking turns holding his hand, the oxygen concentrator and carrying him when he needed it. Gave Trish and I the chance to have one of those “Did you ever think we’d see our little boy doing this?” moments.

I’m so glad we were aware of this and so glad that this was what marked Rudy’s last days with us: being immersed in the love of the family smitten with him and being rendered breathless by his ability to extract more joy from a moment than any of us ever could.

We’ve seen things more beautiful than we ever knew existed. The weight of losing this is unbearable. So grateful for people who’ve walked with us and trusting that this will be what God uses to lead us from here.

More when we can.

Rolf

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All done!

Got buzzed shortly after the last post and figured it would just be the lab giving a status update. Discovered Dr. Dan was ready to give his report. No time to elaborate on that but the term “ridiculously good” was used repeatedly.  Not used to hearing that in a cath conference, so we’re a little bewildered.

We just got back to Rudy in recovery.  Leave it to the little champion to be here smiling and making little pig snorts as he comes out from under anesthesia! If things keep going smoothly we should be on our way home tonight. 

Checked in, Rolled and waiting 

A brief update while we’ve got time to post:  we had a 9am check-in here at UCLA so we were glad to be spared having to roll in the wee hours. We opted for the slightly longer drive down the coast (as we often do) as it just feels like a more peaceful start to a day like today. 

Demonstrating his ability to get excited about anything, Rudy asked repeatedly if he could bring wear his McQueen backpack and slippers to the hospital (and wore them for hours last evening after packing his toys).  Walked into the hospital like a boss. 


After check-in we moved to pre-op and got check-ins from the docs and kept Rudy occupied until they rolled him to the lab just before 1pm.  Gave us a thumbs up before he went through the doors:


Been close to three hours and we expect it to be quite a while longer. We’re OK with them taking their time. Thanks for keeping Rudy in your prayers. 

Amazing (the) Doctors

Rudy had two check-ins down at UCLA this past week.  The first was at the dental clinic.  I think we’ve mentioned here before that good dental hygiene and care is a surprisingly critical issue for heart transplant candidates.  In order to keep on top of this he gets to travel all the way to LA for what usually amounts to a quick checkup–but this one had a little more excitement than usual.  Some roughhousing recently led to Rudy losing a front tooth and left the one next to it pretty loose.  Upon further inspection in the dentist’s chair (you see where this is going, right?) the second was pulled as well making Rudy the embodiment of a fine Christmas cliche.

Thursday, we had his six-month appointment with the transplant team.  While Rudy isn’t listed as a transplant candidate, this serves as a means for the team to stay current on his condition.  Trips like this to LA are significant not just because of the appointment itself, but all that comes with just being in that place again–the memories evoked by stepping over a familiar crack in the sidewalk, recalling a conversation had at a particular lunch table, the emotions that come from walking by a bench that you once tried to gather yourself on, and the likelihood of running into some of the incredible people that were such skillful and compassionate guides during Rudy’s fight there.  Add to this the fact that Rudy was consistently emphatic about walking instead of riding in the wheelchair.  Not sure how much he knew about where he was but it gave me a lump in my throat to see him stomp down hallways with his mix of determination and mischief.

He had an extensive echo done and then we met with Dr. Alejos.  Nothing really significant to report in either direction there.  Everyone is extremely impressed by Rudy’s weight gain and developmental growth–Dr. Alejos always comments on how much he likes to hear the racket of an impatient kid waiting in the exam room and welcomed Rudy’s rambunctious energy.  He observed that no change is a good thing and didn’t see anything on the echo that would make him want to do a cath.  Even though he wouldn’t consider Rudy a candidate for any surgical intervention at this point, he also doesn’t see any imminent need.  We asked him if it surprised him that Rudy would be doing as well as he is and he answered, “If I was just looking at files and reports, I would envision a very different kid–but I know how Rudy fought his way through challenge after challenge here in the ICU.  There’s some things we just can’t define in medical terms.”

After wrapping up at the clinic, we decided to pop up to the 5th floor.  We weren’t going to bug people by ringing the bell to enter the ICU and only intended to take a lap around the hallways and let Rudy see the pictures of penguins and puffins we used to look at–until Dr. Andy popped out just as we were walking by and waved us in to say hi to the crew on duty.  So great to see Dr. Andy M, Dr. Andy S, Dr. Myke, Dr. Julianne, Jennifer, Roger and several of the nurses still there.  Rudy didn’t disappoint and strutted up and down the hallway, saying hi to everyone, wanting to play with their computers and machines and trying to run away from us.  Hard to put into words what the feelings were to see our seven year old strutting past his old room–in the unit where he was the first patient–and rooms where other kids were now waging their own fights.

Unbelievable.

There were several times during the seven months he was in the CTICU when I wondered if Rudy would ever make it out of the unit.  I don’t think I ever imagined I’d see him walking through it with his trademark giggle and chatter.  A sacred moment caught us by surprise.  So grateful for this place and the exceptional people there–and glad they could get a glimpse of the rich life the little baby boy they watched over seven years ago now has.

After our quick visit there, Dr. Rick left a meeting to greet us in the lobby and Dr. Dan (who had already read the echo report) and Dr. Greg came and met us on the sidewalk outside the lab.  In both instances, they were visibly surprised when Rudy walked up to them and we enjoyed visiting in between taking turns running after him.  All of them were so affirming of his progress and we were so grateful for the amazing people who have come along us in this journey and focus so much incredible expertise on Rudy.  (In fact, we were so amazed, we forgot to take any pictures…boo!)

We have, however, captured some Christmas fun so far this month…

Trish, Max, Olivia and Rudy braved the frigid temps (of about 55 degrees) and helped officially usher in the holiday season in the annual Santa Barbara Holiday Parade.

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Rudy was a super star!
Rudy was a super star!

Saturday included our family’s favorite Goleta tradition…Christmas at Stow House!!!  Santa recognized Rudy and greeted him with outstretched arms & great enthusiasm as Rudy walked up to the man in red all on his own.

Rudy studying Santa hard right before it was his turn to say hi.
Rudy waiting his turn to say hi.
Happy Friends
Happy Friends
Tradition!
Tradition!
Rudy having fun with fellow elf Emily.
Rudy having fun with fellow elf Emily.
So sweet!
So sweet!
Reingoats!
Visiting with the Reingoats!
Tractor ride fun!
Tractor ride fun…
...an extra long ride around the lake.
…and we got an extra long ride around the lake.
All aboard!
All aboard!

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Anticipation for Christmas is growing!  We have the SBRM staff celebration to look forward to this week and the arrival of both Oma and Wilson on Thursday.  With the bulk of Rudy’s key doctor appointments behind us, we are ready for some more serious Christmas fun.

 

 

 

Remembering Gwendolyn

We said goodbye to Gwendolyn Strong last weekend. She was an inspiring girl with heroic parents, Bill and Victoria. On our journey with a medically fragile child, we haven’t really found that “support groups” work. Life with a family member in need of round-the-clock care is uniquely demanding such that carving out time for structured activity and another meeting is very difficult. But we have come across people who serve as valuable examples and encourage us in our own journey by the way they navigate theirs. While life doesn’t allow for extended and regular contact, when they live in your town you can run into each other occasionally, you can touch base with a question about a doctor or local resource, and— perhaps more than anything—you can get a knowing nod, smile or sigh as you keep battling on.

Gwendolyn was an amazing child who lived an amazing life and, while it’s hard to look past how much a terrible illness robbed her of, it was a life so abundantly rich in love from friends, family, our community and the world beyond. But no one’s love was more evident than that of her parents—and I’m so glad Gwendolyn experienced that. Bill and Victoria were knowledgeable advocates who fought hard alongside their daughter. They never lost sight of the severity of her condition and the likely outcomes, but also constantly kept the fact that she was a little girl filled with wonder and personality in view. They nurtured, celebrated, trusted, challenged, inspired and pressed on. While their child’s condition would have justified narrowing their focus and attention only to their own family’s concerns, they looked broadly beyond themselves to other families facing similar struggles and poured energy into a foundation so that future suffering might be spared.

THE PART WHERE I (ROLF) MAKE THIS ABOUT ME: I’ve got no real eloquent way of wrapping this up and I’m very hesitant to go on as any grief I might be feeling is nothing compared to the Strongs’ heartbreak, but I guess since this is my blog about me I can do that here.

I was in a bad mood in the evening after the memorial service. At first I thought it was just frustration over a few things breaking around the house, but it became clear at 2am that things were running deeper. A few years ago, I remember coping with Nina’s memorial by going numb. Not sure I’m doing that now, but the thoughts that fly through your head at that hour can be torture:

Rudy is an outlier—like Gwendolyn—having lived significantly beyond what several doctors might have thought. that’s cause for celebration…but also makes you wonder how long such a run can last. you can be the best special needs parent in the world and that won’t save your child. with life dominated now by care needs, how could we ever adjust to life without them? not sure if I can list all the kids in our circle who’ve died. i can only think of three HLHS kids Rudy’s age we’ve been following since birth who are still alive. when did their parents know it was the end? what kind of warning will we have? we know of two kids who died on the transplant table last month. i hate that I go to kids’ memorial services and actually entertain what things I might include at my son’s.

Once the musings start, it’s kind of hard to stop the avalanche. Scary to stop all the activity of life to verbalize the raw questions we wrestle with and the feelings that accompany them.  I’m grateful to have fulfilling and meaningful work as well as commitments and hobbies that demand a healthy degree of focus and energy, but events like this can trigger a temptation to dive into them to the point where they become a distraction.  Don’t freak out–we’re OK.  This is our reality.  We laugh a a lot and embrace all the moments of beauty we capture on this blog.  Perhaps the fact that they take place amidst the undercurrent we don’t often talk about is what makes them all the more precious.

Still no eloquent way to wrap this up. Time to hug my family and gaze in wonder at the little half-heart warrior.