Rudy’s “Birthday Week” began this morning with a big and bittersweet transition…school nurse change.  Nurse Viviana has accepted another great position within the school district and today, sadly, was her last day with Rudy.  We are so grateful to Viviana for her attentive and tender care of our boy and I know she will be missed by all in room KB but we are also very excited for her and the new opportunities she’ll have in her new role as a school nurse.  So, Viviana leaving is the bitter part but there is also a sweet side to this transition as Nurse Sara is returning!  This is definitely a pleasant surprise and we are thankful that her return coincides with Viviana’s departure making this a smoother transition for Rudy.  🙂  Woo Hoo!  Welcome Back Sara!!

We enjoyed another great SB Heart Walk event on Saturday.  It’s always such a great time to connect with others in our community affected by heart disease one way or another.  We appreciated Rudy’s teacher, Miss A., and Nurse Viviana joining us for the morning and were surprised by one of Rudy’s CTICU nurses from UCLA!!  What a fun encouragement.  We definitely missed Wilson but thanks to technology, he was present via FaceTime for a few minutes!  🙂  Here’s a little sneak peak into our fun…

Looking forward to Rudy’s actual birthday on Thursday!  Fun! Fun!

The adjustment to Wilson being away at school continues but we haven’t had much time to be sad as there has been much to celebrate in the past two weeks…

our girl turned the big 1-3 last week…

…Rolf spoke at Westmont College…click here for the link to the video recording.

…and we concluded our summer o’ weddings this past weekend with the wedding of our goddaughter Maya in Santa Rosa!  😉

It definitely does my heart good to get out of my world from time to time and connect face to face with dear friends from long ago…not only is it refreshing but it helps put things I’m dealing with in perspective a little bit.  I think when you are living with a chronic illness or long term stressful situation, it’s easy to forget what life was like (what YOU were like) before the challenges.  It’s especially true for me in Santa Barbara.  Because Rudy was born within a year of our family moving to SB, our community here doesn’t really know our family BR (Before Rudy) and I’m not really known apart from being a wife and mother…especially as it relates to Rudy.  It’s not a bad thing particularly just more evident to me after nostalgic getaways like the quick trip up north we had this weekend.  It’s both fun and sad to be reminded of simpler times.

We also had Rudy’s Back-to-School Night this past week.  We continue to be blessed by his positive attitude toward school.  Thanks to Nurse Viviana, we get to catch a glimpse into his day from time to time…

Miss A. has noticed a surge in Rudy’s capacity to learn and in his eagerness to learn since school has resumed…he’s made so much progress that she is recommending his IEP meeting be moved up to October sometime to update his goals!  This is an encouragement for sure and definitely worthy of adding to the list of things to celebrate!  🙂

Our household is a little quieter this week with Wilson gone.  He and Rolf loaded up the truck and headed for Azusa Pacific University early Friday morning.  They participated in a full weekend of activities and seminars for incoming students & their parents.  The rest of us Geylings arrived at APU early on Sunday in time to attend the final assembly, grab some lunch with friends and check out Wilson’s room.  It was definitely hard to say goodbye and leave our big boy behind but I think it’s really important to recognize that this is not only a new season for Wilson but for the rest of our family as well.  The change in dynamics, shift in focus, moving around of furniture…it’s all an adjustment for this mama’s achy heart for sure but I’m also excited to see what this next season will mean for Max and Olivia and Rudy.  I’m praying for fresh vision for all SIX of us as we embrace where we are individually and what lies before us as a family.

Medical Update:

In addition to all the activity last week, Rudy had his routine cardiology appt with Dr. Harake.  His echo exam revealed no new changes…for better or worse.  As a result, there is no plan to schedule a heart cath this fall which is nice.  There will be a need to go in and coil some more collateral vessels (blood vessel branches that form to accommodate insufficient circulation) at some point but for now Rudy can enjoy a procedure-free fall.  The big news is that Rudy weighed in at 45 pounds!!!  He has been lingering around 40lbs (give or take a pound) for over two years!  His weight gain and height growth are encouraging and I’m eager to hear what his Gastroenterologist and Endocrinologist have to say about it when we see them later this fall.

Speaking of fall,  I’m definitely ready for fall to arrive as we gear up for another major heat wave here in SB this week!  There are some season changes that can’t come quick enough for me!  Ha Ha

Happy September Everybody!!

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!

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…

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!!

 

 

 

 

 

 

 

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 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.

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?

 

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…

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…

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!!!

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

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!

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.

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.  😉

I think Grandpa Dick would be so proud!  🙂