Not Today

The outpouring of love and kindness and remembrances on Instagram, FB, in texts, emails and phone calls has truly buoyed our family in the midst of this crushing loss.  All the messages and photos make us cry but also fill us with a profound sense of being surrounded…especially meaningful as we navigate this from so far away.

I so appreciate Rolf sharing about our last day together as a family with Rudy…it really was magical.  Although we are all grieving differently, I’m grateful for our family’s ability to process thoughts and feelings verbally right now as things surface.  Not to overshadow Rolf’s post, but I wanted to share my memories of Rudy’s last day before the details start to fade.

To say “losing Rudy is beyond comprehension” would be an understatement.  In my mind, his decline was going to be gradual…we were going to see it coming…we were going to do hospice at home with the help of “Nell”, our friend who also happens to be a hospice nurse.  In my mind, we were going to be cuddled in bed, surrounded by people we love.  In my mind, Rudy’s last moments would be peaceful and he would hear our goodbyes…might have even had the presence of mind to usher him into heaven with a favorite hymn.  I had it all planned out…in my mind.

What unfolded was a very different scenario.  Just Sunday we headed off to church with our big 15 passenger van rental packed full and ready to embark on an epic road trip to visit family in Kansas.  We were excited to travel along Route 66 and see the beauty of the Southwest.  It was going to take us 3 long days of driving to get to our destination but we planned to make some fun stops along the way.  Monday was a particularly incredible day (as Rolf already shared) and we pulled into Guymon, OK a little after 11pm for our final overnight stay before reaching my mom’s on Tuesday.  We all fell into bed, slept soundly and woke up bright and early Tuesday morning ready for a fun stop in Wichita to visit friends before heading on up to Lawrence.  Rudy woke up happy, sat on the floor playing with his new flatbed truck toy he got the day before, asked to watch Paw Patrol on TV and happily stayed in the room while the rest of us ate breakfast in the lobby in shifts.  When we got back to the room, I asked Wilson to give Rudy a quick bath while the rest of us packed up and loaded the van.  Rudy was cold after his bath so once Wilson got him dressed, Olivia snuggled with him under the bed covers and bumped up his O2 as she typically does when we need to warm him up but he was still uncomfortable.  Although it was early, the air temperature outside was already heating up so Olivia suggested he might warm up faster in the van.  She carried him to his car seat and I followed behind with the O2 concentrator.  Rudy was fussy but there was NOTHING going on to suggest there was something serious happening.  Olivia left us to go get her things and I saddled up next to Rudy to comfort him while we waited for the others.

Without warning, he got quiet, he might have opened his eyes a bit and the next thing I knew I could only see the whites of his eyes and he became unresponsive.  I yelled to Rolf to call 911, he ran into the lobby and the clerk at the desk told him it would be faster to drive to the hospital ourselves…in seconds the big kids flew into the van, the doors slammed shut, I unbuckled Rudy, put him on my lap and, not detecting a breath, began doing mouth to mouth.  Rolf had us at the hospital in less than 5 minutes, Wilson grabbed Rudy from me and ran him into the ER.  The amazing team in the ER began working on him immediately…chest compressions, intubation, defibrillator…the big sibs settled in the ER waiting area and Rolf joined me with Rudy.  For the next 45 minutes, we watched for any sign of life in our boy, waited for the gasp of air that would suddenly bring him back, occasionally called out “We’re here Rudy…Mommy and Daddy are right here”.  Feeling completely helpless I remember cheering on Nurse Mary who was relentless in giving Rudy chest compressions…”Don’t stop Mary.  Keep going!”…all the while whispering under my breath…”Not today, Rudy, not today”.  At one point, the mood in the room changed ever so slightly and Rolf whispered in my ear “they’re only doing this for us now”.  The ER doctor looked up at me without saying a word but kept working…a few minutes later he walked up to me and Rolf and said that they were able to get his heart rate up a bit but there hadn’t been any blood flow to his brain for too long.  With that, I said “we’re done”, climbed up on the gurney with Rudy and started taking all the wires and tubes off of him.  Rolf  left to get the big sibs, the room cleared and there we were, just as we were when our journey with Rudy’s heart defect began, the 5 of us huddled in a medical examination room in disbelief trying to process what just happened.  We each took time to hold Rudy and love on him.  It was tender.  It was sweet.

We were informed a little while later that because of the special circumstances of the case, the fact that it crosses state lines and to follow a protocol to rule out child abuse, the OK state medial examiner wouldn’t release Rudy to us without an investigation which required him to be transported to OK City.  The local mortician, Bob, promised he would take special care of Rudy in the meantime.  So, with that, we made the agonizing decision to leave Rudy in Guymon and make our way to Lawrence to be with family and try to figure out what to do next.  Rudy’s body arrived in OK City sometime Tuesday evening and by Wednesday morning the medical examiner was finished with his investigation and notified us he was ready to be released.  Rolf, with the help of our good friend and funeral planner Chris, arranged for Rudy to be released in the care of a mortuary in OK City who is now working with the mortuary in Goleta to coordinate Rudy’s transport back to CA…a surreal logistical puzzle that Rolf is excellently executing remotely by phone.

I know this is more information than anyone needs or wants but I wanted to record it for me…for us…for the big sibs and their families when I’m long gone.   Like our dear friends who have walked this road before us, I understand now the importance of holding on to details and not wanting the details to slip away.

In the hours since losing our boy, I’ve played it back over and over many times and although it isn’t at all how I planned it would be…I’m at peace with how it played out…honestly, it was a reminder of how little control we have in life. EVER.  We had to surrender every detail of that morning…there were no choices…no room for stating preferences.  We put our boy in the care of perfect strangers in a completely unfamiliar place and, in less than 3 hours from first arriving at the ER… drove away.  Even now I wonder how in the world we did that!  God was and IS so present.  We are experiencing His peace in the midst of the excruciating pain…everything aches…my head, my teeth, my body, my bones…the pain is so deep and I sometimes find myself begging for relief but there is peace.

So what do we do now?  Plans are underway to get our family back to California this weekend.  Although the details are not confirmed, we are hoping to have Rudy’s service and burial sometime around August 7th.  Please keep an eye out for service details in the coming days.  In the meantime,  pray for our family…we need wisdom and grace, good communication and clarity as we move forward in the next couple of weeks especially.  We love our worldwide circle of family and friends so dearly and can’t thank you enough for loving our family and our boy the way you have the past 8 1/2 years.  We are humbled and lifted up by the love all at the same time.  Forever grateful,  Trish

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.



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”!