(Big Breath) Okay, Here We Go!

August 30, 2015 by

This week marks a major milestone in the life of our family as Wilson heads off to college on Friday.  I’m definitely bracing myself for the inevitable “pit in my stomach” feeling that I know I’ll experience when we say goodbye and leave him behind at APU but, right now, I’m mostly feeling very excited for Wilson knowing he is so ready for this.  He is going to LOVE college…fresh challenges, new friends, new opportunities…new EVERYTHING!

I’m trying hard to find an appropriate balance in this first-time-ever-mom-moment for me.  Yesterday was Wilson’s last day at the car wash and I wondered out loud whether or not he wanted to commemorate it by taking brownies in to his co-workers to which Wilson responded “It’s just like any other day, Mom.”.  I got weepy at church this morning during worship practice listening to him sing and play knowing it was his last day behind the drum kit to which he said “It’s just like any other day, Mom.”.  Ha Ha!  I may be hearing his refrain multiple times this week as we pack up his belongings and make room for Rudy in his soon-to-be shared bedroom and I get that Wilson doesn’t want me to make a fuss…he’s navigating the process his own way but the reality is that these days leading up to Wilson’s departure aren’t “just like any other day”.  It’s a big deal.  It’s the very thing Rolf and I have been preparing him for for eighteen years.  He’s getting ready to fly and what’s more terrifying, I’m getting ready to watch him lift off!

Up until now, Wilson’s steps toward independence have felt a lot like when my kids jumped into the pool by themselves for the first time…toes over the pool’s edge, knees knocking, eyes on me waiting in the water with my outstretched hands ready to grab and hold tight if needed.  This step feels more like the first dive when I stood behind them on the pool deck, helping them position just right (chin to chest, arms at your ears!), giving them the final encouragement (“You got this!  Here ‘ya go!) and then watching them dive and…swim away.

I really don’t mean to be overly dramatic about the whole thing…billions of kids have left home for the first time before Wilson and billions of kids will follow (including three more Geylings) but I can’t help but rest for a minute on the fact that this is it…we have been helping Wilson position himself for a successful launch his whole life and now it’s time for our final encouragement…

I’ve been thinking for several weeks about what my “final encouragement” to Wilson (and Max and Olivia and Rudy when the time comes) would be and, honestly, when I pare it down to the heart of what Rolf and I tried to cultivate in our kids, it fits on three quarters of one page.  My encouragement would read something like this:

Precious one,

LOVE GOD with everything that makes you uniquely you. Love Him with your big heart, your passions, your gifts & talents and your intelligence. Demonstrate your love for Him in your joy for life and in your knowledge of and love for His word…BELIEVE, whether you “feel” it or not, that you are loved by God and worthy (worthy not because of what you do but because of what Christ did on the cross) of His love.

BE KIND to people. Be discerning…Identify and seek to understand the weaknesses in the people that surround you but ALWAYS encourage, support and celebrate their strengths. Prioritize people and be known for your gentleness.

BE KIND to yourself. Be self aware…Identify and seek to understand your weaknesses but know and use your strengths with confidence, humility and grace. Enjoy yourself. Laugh often. Make room for things that refresh your spirit and bring a smile to your face AND CHOOSE to do the less desirable things in life with a happy heart.

BE RESPONSIBLE for yourself, the things you say and the things you do. Own your mistakes and grow from them. (PERIOD!  No elaboration needed.)

EMBRACE LIFE…ALL of it! Live life fully in all circumstances…sometimes in BIG, OUT LOUD ways but mostly in simple, quiet ways. Embrace each season whether happy or heartbreaking with faith and, most importantly, never forget that God is near.

As you prepare to take this next big step toward independence, it boils down to this:  the choices your dad and I made in raising you won’t guarantee you success or wealth or even an easy life but we can guarantee you a life rich in relationship and purpose if your choices from here on out reflect the values we tried hard to live out as a young family…sometimes our efforts were clumsy and sometimes our efforts were spot on but our goal was always that you would know God and that you would know through word and through action how very much you are loved…okay, so here ‘ya go, you’re ready, you got this!  Oh yeah, and one more thing, we’re so very proud of you!

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And So It Begins….

August 26, 2015 by

Today marked the first day of the 2015-16 School Year for the three youngest Geylings and despite it being wickedly hot (for Santa Barbara), it was a good day for all…

First Day of School Eve 8-25-15

“First Day of School” Eve 8-25-15

The traditional first day of school porch pic looked a little different this year...

Umm, I guess it’s not EVERYONE’s first day of school…

Take Two!

Traditional First Day of School Porch Pic – Take Two! (8-26-15)

Max was cool as a cucumber heading off to 11th grade!

Max was cool as a cucumber heading off to 11th grade!

8th grader Olivia also playing it cool.

8th grader Olivia also playing it cool.

Rudy reunited with Nurse Viviana!  Woo Hoo!!

Rudy reunited with Nurse Viviana! Woo Hoo!!

Although Rudy is officially a 1st grader this year, his special ed class is a K/1 combo that mainstreams with one of the Kindergarten classes on campus.  As a result, Rudy’s schedule looks a lot like it did last year (with an additional hour and fifteen minutes at the end of the day after the K’s leave).  Not that Rudy had ANY inhibitions about going to school but the familiarity of his daily routine is nice and will aid in what we hope will be a smooth transition back into a structured day.  He was so happy to see his friends and teachers today.  Rolf and I dropped him off and as Rolf started to push his wheelchair from the parking lot toward his classroom, Rudy said “No Dad!  Walk!”.  Rolf took Rudy out of his chair and he (very proudly) made a bee line for his classroom the second his feet hit the ground!  Ha Ha Nurse Viviana reported at the end of the day that he had a great first day.  We are so grateful he is starting the school year off healthy and with great energy and enthusiasm for learning.  If today is any indication, this is going to be a fun year of progress and growth for the boy wonder.

With that, we say one last final goodbye to Summer 2015 and set our sights on the next big family “milestone” – Wilson’s college departure on September 4th!!  Yikes!!

Bye Bye Summer!

Bye Bye Summer!

 

 

 

 

 

 

 

Quality Sibling Time – QST

August 22, 2015 by

Summer is coming to a quick close and we have just a couple of days left before the 2015-16 School Year begins here in Goleta.  Max is all checked-in and registered for his Junior Year, Olivia gets her class schedule and 8th grade school ID on Monday and Rudy meets his teacher on Tuesday…all report to school bright and early on Wednesday morning.  Thankfully Wilson doesn’t leave for APU for another couple of weeks so we have time to get everyone else settled before facing his departure.

Rudy is healthy and happy.  When I asked him earlier this week if he was ready to go back to school, he exclaimed “YESSSSSSS” with an added fist pump!  Ha Ha  I’m glad he is so excited.  ;)  We’ve enjoyed some quieter summer moments the past couple of weeks (aka “quality sibling time”)  as well as squeezed in one last week o’ fun with Rolf’s sister and her two daughters who visited from Boston this past week (QST of another kind).  :)

I’m grateful for our summer…we made a lot of fun memories and enjoyed time with a lot of fun people…and it seems everyone is ready to head back to school so I guess it’s time to embrace the shift to a new season and say goodbye to summer.  (sniff, sniff)

Here is a last look at Summer 2015…

Rudy beating the heatwave on a lazy afternoon.

Rudy beating the heatwave on a lazy afternoon.

Hockey road trip to Calabasas...Max AND Rudy are excited hockey to starting up again!

Hockey road trip to Calabasas…Max AND Rudy are excited hockey is starting up again!

Checking out the competition...

Checking out the competition…

Chillin' with Olivia

Chillin’ with Olivia

"Play with me Wilthon!!"

“Pay with me Wilthun!!”

Cousin fun in a surrey.

Cousin fun in a surrey.

A surrey selfie!

A surrey selfie!

Fun with Aunt Andi and cousins Maya & Kyra

Fun with Aunt Andi and cousins Maya & Kyra

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Sis-in-law selfie!

Sis-in-law selfie!

Sweet Sibs

Sweet Sibs

 

 

 

Remembering Gwendolyn

August 6, 2015 by

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.

Fairy Godmother…plus one :)

August 3, 2015 by

Rudy was pretty lost without the big sibs last week which made a visit from his godmother and her daughter especially fun!  Grace and C.C. arrived late Wednesday night and Rudy was in heaven demanding their undivided attention.  He had had a bit of an episode the day before which spooked me enough to warrant a trip to the ER.  His symptoms were such that I thought he was having a stroke but he perked up with additional O2 while in the ER and a specific cause could not be determined.  We came home and laid low the rest of the day…a visit from Grace and C.C. was a healthy distraction for us both.

Fun at the harbor!

Fun at the harbor!

Cuddle time with Grace.

Cuddle time with Grace.

C.C. is a talented young artist (you may remember her “Rudy’s Heart” painting  from couple of years ago) and planned ahead to do a painting project with Rudy. She drew one of Rudy’s favorite objects and they painted it together…can you guess what it is?

Craft time with C.C.

Craft time with C.C.

Masters at work.

Masters at work.

 

Tah dah!

Tah dah!  “Rudy’s Robot”

The big kids made it home from camp on Friday and enjoyed a couple of days with Grace and C.C. too.  We didn’t hear from the kids while they were on the mountain (no cell service) so we were especially excited to catch this little glimpse into their fun…the boys serenaded Olivia with an original parody of Ed Sheeran’s song “Thinking Out Loud”…LOVE IT!!!

Things are a little slower this next week which is nice…the kids all came home with colds from camp and are in need of a little rest.  It’s hard to believe August is here already!  Happy August dear ones…

super fun times!

super fun times!

Rudy’s Start to Summer

July 27, 2015 by
Rudy's last day of summer school with Nurse Viviana.

Rudy’s last day of summer school with Nurse Viviana.

Rudy finished up summer school last week…his teacher had nothing but great things to report.  He worked hard on his workbooks and various therapies and, of course, enjoyed adaptive PE with Coach Galvan.  He came home happy on the bus with nurse Viviana every day and looked forward to going back the next morning.  :)  Sadly, his first full week of summer break coincides with the big kids heading off to camp…when we dropped them off this morning, Rudy asked over and over as they unloaded their luggage “where you going?”.  He would have jumped in the church van with them if he could.  Poor guy…

Saying "goodbye" to the big sibs...

Saying “goodbye” to the big sibs…

He may be a little lost without the big sibs this week but a quiet house will allow him to nap and get some good rest…and we have a couple of visits from good friends to look forward to!  :)  Summer ROCKS!!!

Celebrating and Remembering

July 17, 2015 by
Rudy on the 4th of July....

Rudy on the 4th of July….

...at the SBRM Homeless Guest BBQ!

…at the SBRM Homeless Guest BBQ!

Having so much fun!!!

Having so much fun!!!

July is only 1/2 over but Rudy and the fam have had enough activity to fill the whole month…or two!  :)  We enjoyed our annual 4th of July BBQ celebration at the rescue mission, we sent Max off to Kentucky for a very special week-long national youth conference with our church and the rest of us were blessed to host a couple of dinner parties for the 13 men and women who graduated from SBRMs residential treatment program on the 11th…and that was just the FIRST week of July!  Ha Ha

SBRM's two OGs!  Olivia Geyling and Olivia Goodin ;)

SBRM’s two OGs! Olivia Geyling and Olivia Goodin ;)

Tucked in between these special SBRM celebrations, we were honored to celebrate another very special couple to our family.  This wedding was particularly sweet as we are friends with BOTH families and we have had the privilege of watching Ryne and Miranda’s relationship grow from high school sweethearts to husband and wife.  Wilson was honored to be an usher in the wedding party and Olivia had an official role at the reception as well…so fun for them!

Wilson was the

The official “fifth wheel” picture…Wilson tagged along on many trips to 7/11 and In ‘n Out when Ryne and Miranda were first dating!! Ha ha Some things never change!!! ;)

Good Friends...Good Times!

Good Friends…Good Times!

Since Ryne is a car man, there was a strong

Since Ryne is a car man, there was a strong “car” presence at the reception of which Rudy very much approved!!!

Official Usher and Greeter!

Official Usher and Greeter!

Awesome reception fun!!!

Awesome reception fun!!!

Not a bad pic of the oldies!

Not a bad pic of the oldies!

Congratulations Ryne and Miranda!  Woo Hoo!

Congratulations Ryne and Miranda! Woo Hoo!

And all this fun led us right into VBS (Vacation Bible School)  week at church…another summer tradition we all look forward to.  Wilson led the worship team along with Max, Olivia was part of the teaching team for the Kindergarteners, Rolf creatively presented the bible story each night and I was on Rudy duty.  It’s a fun opportunity for us to partner together and have a ton of fun with our awesome community of friends at church.  It’s interesting to watch Rudy as the distinction between typical situations and special ed environments become more apparent for him…although he is making GREAT progress developmentally, the reality is that it is very difficult for him to navigate typical situations without a TON of support and it is painfully apparent at big kid activities like VBS.  It makes me so grateful for our sweet, loving and accommodating church family as well as the gifted special education staff in our school district who pour into our boy.  Speaking of school, Rudy has one more week of summer school…he has had such a great experience…he’ll miss it for sure but it will be nice to have a couple of unstructured weeks before we begin to prepare for the regular school year again.

Rudy the SUPER Scientist at SonSparks Lab!

Rudy the SUPER Scientist at SonSparks Lab!

A VBS selfie with Rudy and teacher Greg!

A VBS selfie with Rudy and teacher Greg!

Today is the last day of VBS and it also marks the fifth anniversary of my dad’s passing…how can it be his fifth year memorial?  With so many significant moments in the life of our family the past couple of months,  Dad has come to mind a lot and I’ve missed his presence.  As I watch the kids grow into independent, confident, interesting people, I am reminded of the last lucid conversation I had with my dad.  He had just found out that his brain cancer was not responding to treatment anymore and that the prognosis was terminal.  The first thing he said to me was that he was sorry he wasn’t going to have the opportunity to see my children grow up and be there for them.  I think it’s very sweet that of ALL the things he could have been concerned about in that very tender, vulnerable moment, his thoughts centered on family and somehow not finishing his “job”.  I’ve thought of that conversation often lately and how pleased Dad would have been to watch Wilson give his speech at graduation or to watch Olivia fearlessly swim with Dolphins in Hawaii or to see Max enthusiastically head off to Kentucky eager to grow in his faith and I think of it almost every day where Rudy is concerned…Because of Dad’s athletic achievements, I think he would have especially appreciated how far Rudy has come and would have celebrated his achievements in mobility with great enthusiasm…and I suspect he would have been in awe of how resilient Rudy is…demonstrating it over and over again when he meets routine trips to the cath lab with a smile, black-eye producing tumbles with a chuckle and monthly blood draws with barely a whimper.  ;)

With Dad at the KU Hall of Fame...spring 2010

With Dad at the KU Hall of Fame…spring 2010

Grandpa Dick and

Grandpa Dick and “steroid” Rudy  (2010)

Sharing a great laugh!

Sharing a great laugh! (2010)

I think Grandpa Dick would be so proud!

Rudy 2015

I think Grandpa Dick would be so proud!  :)

ALOOOOOOHA HAWAI’I!

July 3, 2015 by

We made it home from our special summer adventure in Hawaii and jumped right back into the work/summer school/therapy routine again.  It so easy to get swept up in the flurry of “to dos” so the challenge now is to hang on to a little of the laid-back aloha spirit and keep that spirit alive this summer whether we’re in a doctor’s office, working on a house project or shopping for groceries.  ;)

We are so grateful!  We’ve never attempted a trip like this before.  Before Rudy was born, our vacation time was used to visit our parents back in Kansas and Texas.  Since Rudy’s birth, our summer vacations have been limited to small-scale road trip destinations within California with the exception of Rudy’s Wish Trip (organized by the Make-A-Wish Foundation) and a rented-RV trip to Kansas to see my dad in the last months of his battle with brain cancer.  With Wilson heading off to college and the dynamic of our family’s daily life changing in the months ahead, it seemed like the right time for a big family trip.

When Rolf and I started to brainstorm several months ago, we entertained the thought of finding care for Rudy at home allowing us a very different experience with just the big kids but when we ran the idea by the big sibs they quickly protested and said we couldn’t go without Rudy!  :)  And so began the hard work of organizing logistics that fit Rudy’s special needs…ordering oxygen and enteral supplies for delivery on Oahu and Maui, renting vehicles big enough to haul Rudy’s wheelchair, getting the airline-required doctor letters of release for travel with O2 concentrator, gathering information on the hospitals near our accomodations, making sure the activities we signed up for were wheelchair accessible, etc,etc,etc.  None of it rocket science but definitely enough extra work in pre-planning that could cause one to think twice about going on such a trip.

Rolf and I had what we affectionately call “the honeymoon from hell” in Hawaii that we’ve wanted to redeem for a couple of decades now and our kids, Oma & Gma Jo have never been to Hawaii so we were all were pretty excited to experience new adventures and make some special memories together!!  Rolf did a great job of organizing an itinerary that included a few family outings, a special experience for each of the big kids and a good balance of down time at a condo right on the water.  Rudy’s body had a hard time adjusting to the heat and humidity of the islands so he spent a good bit of his time indoors initially which made our condo location ideal…allowing him to enjoy the beautiful view and the big sibs’ fun water play from the comfort of the air-conditioned condo!  :)

We started our adventure with 3 days in Oahu where we visited the USS Arizona Memorial, where Olivia got to swim with dolphins and where the big boys got to go parasailing…

En route from LAX to Honolulu!

En route from LAX to Honolulu!

Vacation Roomies Gma Jo and Oma!

Vacation Roomies Gma Jo and Oma!

USS Arizona Memorial

USS Arizona Memorial

"Thumbs up" from Rudy

“Thumbs up” from Rudy

While at Pearl Harbor, Rolf and the big boys toured the  "Mighty Mo" aka USS Missouri.

While at Pearl Harbor, Rolf and the big boys toured the “Mighty Mo” aka USS Missouri.

Some good ol' fashioned sibling fun at the hotel pool...

Some good ol’ fashioned sibling fun in the hotel pool…

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Thanks to current "rubber sleeve" technology in cast covers, Rudy got to go swimming too!

Thanks to current “rubber sleeve” technology in cast covers, Rudy got to go swimming too!

...And this is pretty much the view of every picture he took with the underwater camera.  Ha Ha

…And this is pretty much the view of every picture he took with the underwater camera. Ha Ha

Bucket List Dolphin Swim?  Check!

Bucket List Dolphin Swim? Check!

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Rudy just couldn't stay awake long enough to watch Olivia's swim with the dolphins :(

Rudy just couldn’t stay awake long enough to watch Olivia swim with the dolphins :(

Sea Life Park in Oahu...such a pretty locale.

Sea Life Park in Oahu…such a pretty locale.

We didn't get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept to his death by this wave!

We didn’t get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept away by this wave!

The gals enjoyed a lei-making class!

And the gals enjoyed a lei-making class!

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After a whirlwind three days in Waikiki, we packed up and flew to Maui where we planted some roots for a week…

Day 4 - Our flight over to Maui.

Day 4 – Our flight over to Maui.

Sadly, Olivia caught a fever and felt pretty awful on our travel day so she, Rolf and Rudy stayed home from the luau scheduled our first night in Maui :(.

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The big boys were good sports and participated in the "Keiki Hula" solely for a photo op!  Ha Ha

The big boys were good sports and participated in the “Keiki Hula” solely for a photo op! Ha Ha

Chillin' off the lanai...

Chillin’ off the lanai…

One of many beautiful sunsets from our condo...ah, lovely.

One of many beautiful sunsets from our condo…ah, lovely.

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Max the grill master.

Max the grill master.

Rolf's big treat was getting to step off the lanai and SUP anytime he wanted...thanks to a little El Nino, our side of the island enjoyed unusual swells this time of year.  Rolf was a happy camper!

Rolf’s big treat was getting to step off the lanai and SUP anytime he wanted…thanks to a little El Nino, our side of the island enjoyed unusual swells for this time of year. Rolf was a happy camper!

He also made arrangements with a local dude he met online to do a downwind run to Kihei...thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

He also made arrangements with a local dude he met online to do a downwind run to Kihei…thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

The road to Hana was a long and winding day trip but it definitely lived up to it’s reputation for being the most beautiful drive on the island!

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A last minute add on to the itinerary was a helicopter tour...Rudy and I hung back at the condo but the rest of the crew enjoyed this "once-in-a-lifetime" experience!

A last minute add on to the itinerary was a helicopter tour…Rudy and I hung back at the condo but the rest of the crew enjoyed this “once-in-a-lifetime” experience!

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Rudy's been working on "self care" in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on...ha, ha!  Not bad Rudy!

Rudy’s been working on “self care” in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on…ha, ha! Not bad Rudy!

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Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

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Shhhh, I don't think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

Shhhh, I don’t think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

I LOVE pineapple bowls for some reason...I got a small one on our honeymoon and use it all the time...this one in our condo is the biggest one I've ever seen!  Ha

I LOVE pineapple bowls for some reason…I got a small one on our honeymoon and use it all the time…this one in our condo is the biggest one I’ve ever seen! Ha

There were a lot of activities Rudy couldn’t do on this trip but snorkeling wasn’t one of them…we took a family cruise out to Molokini and a sea turtle cove to snorkel and Rudy joined us on the second snorkel stop!

1st stop, Molokini crater…

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Then it was Rudy’s turn!!!!

Getting ready to launch!

Getting ready to launch!

One, two, three, GO!

One, two, three, GO!

Woo Hoo!!  Family snorkel pic!

Woo Hoo!! Family snorkel pic!

Olivia's underwater selfie.

Olivia’s underwater selfie.

Rudy loved his snorkel  float!

Rudy loved his snorkel float!

Rudy's view of the fish!

Rudy’s view of the fish!

The fish's view of Rudy.

The fish’s view of Rudy!

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Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Mother/Daughter

Mother/Daughter

Mother/Son

Mother/Son

Travel day back to the Mainland...Hawaiian Style!

Travel day back to the Mainland…Hawaiian Style!

We got to L.A. early Sunday morning and said goodbye to Oma at LAX where she caught a flight back home to Alabama.  Rudy started summer school at 7:45am the following morning…kind of a rude awakening for us but he was happy to see his friends   and Nurse Viviana again!  While Rudy was in school, Livy, Wilson and I took Gma Jo to the airport for her flight back to Kansas and after school, we all took Rudy to his ortho appt to get his cast removed!!  Keeping the spirit of the islands alive, we had an impromptu “castaway” party right there in the doctor’s office…

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“There ain’t no party like a ‘Castaway’ Party …..ooo, ooo, ooo!!”

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Tah-Dah!!!

Tah-Dah!!!

The next day we headed to Dr. Harake’s for Rudy’s routine check-up and Rudy was being “Mr. Helpful” during his echo exam…Steady, Rudy, steady!

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Rudy’s O2 sats were pretty low – low 70s – (he typically sats in the low 80s) so we’ll keep an eye on that as it could be a bad sign but everything else checked out okay.  No change in his heart size/function.  He was pretty tuckered out this week so I suspect it’ll take his body a few days to settle back to his normal baselines…I think we all may be experiencing a little vacation wear and tear, perhaps, but I think everyone would agree that our trip was well worth it!  :)  Aloha Friends!

A BIG BANG to the Start of Summer!

June 25, 2015 by

Our summer is well under way and we’ve had non-stop fun since the last day of school!

Wilson actually skipped HIS last day of school and our family headed south to attend the wedding of dear friends...

Wilson actually skipped HIS last day of school on June 5th and our family headed south to attend the wedding of dear friends…

Rudy hadn't quite mastered walking with his cast yet so he had to skip the dancing this wedding but he had fun celebrating Pastor Aaron and his new bride Paige nonetheless!!  Woo Hoo!!  :)

Rudy hadn’t quite mastered walking with his cast yet so he had to skip the dancing this wedding but he had fun celebrating Pastor Aaron and his new bride Paige nonetheless!! Woo Hoo!! :)

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Aaron and Paige are dear to our whole family...especially our kids and it is SO MUCH FUN celebrating special people in our life together!

Aaron and Paige are dear to our whole family…especially our kids and it is SO MUCH FUN celebrating special people in our family’s  life together!

Grandma Jo and Oma arrived a couple of days later in time for Wilson’s graduation on the 10th.  The 10th was also Max and Olivia’s long awaited last day of school!!!  Woo Hoo  We had lots going on that day!  :)

Goin' to get that diploma!

Goin’ to get that diploma!

Wilson was selected to give one of the student speeches during the commencement ceremony and it was, of course, a highlight of our day.   Rolf and I weren’t allowed to read it or help him edit it beforehand as he wanted it to be a surprise.  ;)  I’m glad we have a video and transcript of it because, in all honesty, it was hard to focus on what he was saying…all I could think about was how much he’s seen and experienced in his 18 years that has helped shape him…his early years in South Central Los Angeles as a missionary kid, going with the flow through several moves (and three elementary schools) until we settled in Goleta, the many hours he has spent at the rescue mission and, of course, being the big brother to Max, Olivia and Rudy (and the unique experiences/responsibilities that come with being the older sibling of a heart kid).  As Wilson shared his thoughts on “community” with conviction and confidence, all I saw was God’s grace in action…I have no idea to what extent God has extended grace to Wilson in his life so far but I do know without a doubt that there have been many crossroads in the life of our family where darkness and heartbreak could have overwhelmed his spirit but instead he has grown to be a young man confident in God’s love for him and in a greater purpose for life beyond himself!  So, so grateful and so motivated to pray for continued grace to be poured out on him, Max and Olivia (& Rudy too) as the uncertainties of the future unfold in due time.

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What made me most proud listening to Wilson’s speech was knowing how whole-heartedly he believes in the power of community.  He demonstrates it in how he does life and he inspires me.

"The relationships you have with people and the way you maintain those relationships are what is going to matter. Whether revered or shameful that is the legacy that we will all leave behind."

“The relationships you have with people and the way you maintain those relationships are what is going to matter. Whether revered or shameful that is the legacy that we will all leave behind.”

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Rudy, the Grandmas and I had prime handicap seats!!!  Thanks for this fun picture Kathy!!!!

Rudy, the Grandmas and I had prime handicap seats!!! Thanks for this fun picture Kathy!!!!

Rudy sporting a limited edition Wilson button :)

Rudy sporting a limited edition Wilson button :)

 

Graduation Family Pic!

Graduation Family Pic!

After graduation, we hosted an open house to celebrate and over 60 friends came!

After graduation, we celebrated some more with 60+ friends at our home.

We were so grateful to share the evening with friends from church, the neighborhood and the rescue mission!!  :)

We were so grateful to share the evening with friends from LA, church, the neighborhood and the rescue mission!! :)

Our good friend Bob and Wilson's god-father shared a few thoughts and a prayer.

Our good friend Bob (and also Wilson’s god-father) shared a few thoughts and a prayer.

Rudy getting some help signing the guest photo mat :)

Rudy getting some help signing the guest photo mat :)

Rudy's buddy Kyle and his family joined our graduation fun!!

Rudy’s buddy Kyle and his family joined the graduation fun!!

After all that, Rudy still had two more days left of school (Livy even went with him one day to help in his classroom)…he wrapped up his first year at Mountain View on Friday the 12th!  We are so grateful for his successful and super fun first year in Kindergarten…our thanks go out to his teachers Mr. Casady and Miss Avedissian and his nurses Sara, Jomana, Viviana and Karen who all contributed in BIG ways to his adjustment to a new school and his progress!  Way to go Team Rudy!!!

Rudy's last day of school!!

Rudy’s last day of school!!

Thank you Nurse Viviana!

Thank you Nurse Viviana!

Rudy has had a little break and will head back to school for the special ed “extended school year” program next Monday.  Although the summer program is less structured than the regular school year, it helps keep the momentum of Rudy’s progress going and Nurse Viviana will be there to maintain continuity in his care.  Rudy will enjoy seeing Viviana and some of his friends again!

 

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Once all the graduation festivities came to an end, we put the two grandmas to work as we got everyone organized for a big family trip to Hawai’i!!!  Yep, we decided to bite the bullet and make this trip happen (with grandmas in tow too) since this will likely be the last opportunity we’ll all have to travel together like this.  It took months to plan and Rudy has had a bit of a tough adjustment to the heat and humidity of the islands but all in all the hard work and effort in getting our family to Oahu and Maui has been worth it.  Talk about starting off the summer with a big bang…it’ll be hard to top this but we have a whole summer ahead to look forward to.  I’ll post some fun pics of our adventure when we return in a few days.

Aloha and “Happy Summer” everyone!!

 

 

 

 

 

Not Exactly What I Meant

June 1, 2015 by

So, when I posted on Saturday that we were ready to “wrap it up”, I did NOT mean this literally.  As luck would have it, Rudy had a little mishap on Sunday afternoon that resulted in a trip to the ER and a linear fracture in his left tibia.  His leg got wrapped up nice and snug until we could get him to the ortho today.  We just returned from Dr. Maguire’s office and, yep, he broke his leg!  Fudge!  Poop! DAAAARN it!  Aside from the fact that it’s just plain sad to see a little boy in a leg cast at the onset of summer, we’re actually scheduled to take a looooong awaited family trip to Hawaii in a couple of weeks and Rudy’s cast has to stay on for 4 weeks…no ocean fun for the 1/2 heart in Hawaii.  :(  Boo Hoo…not sure he cares but the rest of us are sad for him.  :( :( (double sad face!).  Prayers for patience in the healing process are greatly appreciated.  The cast wasn’t on for 30 minutes before he started to point to it and say “Off, Mama, off”.  Lord have mercy (this I mean literally)…could be a long four weeks.  Hang in there Super Rudy!

Actually kind of comforting to be in the ER and NOT be treating a heart related issue.

Actually kind of comforting to be in the ER and NOT be treating a heart related issue.

Still smiling!

Still smiling!

Rudy was feeling a little snuggly after his trip to the ER which excited Olivia because he doesn't normally sit long enough to cuddle!!

Rudy was feeling a little snuggly after his trip to the ER which excited Olivia because he doesn’t normally sit long enough to cuddle!!

That wasn't too bad, right Rudy?

That wasn’t too bad, right Rudy?

Kinda wiped out for now...

Kinda wiped out for now…


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