After 3 full months of unusually hot temps and humidity here in Santa Barbara, the summer heatwave of 2015 has finally broke and we’re enjoying the beautiful weather we’re known for in our little corner of paradise.  There’s actually a chill in the air this evening and it’s a relief to finally move on to a new, cooler season…just in time for some traditional fall activities:

Fall often includes Rudy’s annual IEP meeting as well.  Each year the many different folks who play a vital part in Rudy’s developmental and educational progress come together to discuss specific goals and action steps to meet those goals in what is called an Individual Education Plan (IEP).  IEP meetings can be long and mind-boggling with the amount of detailed information that is communicated and opened to a group discussion but I’m so grateful for the investment of time that goes into these meetings.  I’m grateful Rudy’s team is willing to take the time necessary to insure we’re all on the same page and that there is continuity in his care in general.  Rolf and I are humbled by the number of gifted individuals it takes to not only educate Rudy but also make it possible for him to even attend school.  (For example, we discovered this month that there was a change in Rudy’s enteral supply provider and it took a couple of weeks to get the prescribed Pediasure Rudy is usually fed.  While we waited for delivery from the new provider, we ran out of feeds and so we headed to Costco to get the Pediasure they sell…not exactly the same formula but we figured it was close enough.  Little did we know what we were in for!  Poor Rudy ended up with a crazy, severe case of diarrhea that we couldn’t get under control…even with the GI doc recommendations!  If it weren’t for Nurse Sara and her willingness to deal with the blow outs that occurred at school, we wouldn’t have been able to send Rudy to school for two whole weeks!   A relatively simple dilemma but with some pretty serious consequences without the extra support Rudy receives.)  Rudy didn’t meet all of his developmental and academic goals from last year but he made progress in most areas and we remain grateful for progress of any kind!  Slow but steady is good…we’ll take that any day!  🙂

The past couple of weeks have been full with some pretty cool highs and some heartbreaking lows for dear friends near and far…such a vivid reminder that life is a constant mix of joy and pain.

Here are some of the highs:

Rudy is doing great in the midst of it all and we’ve appreciated a nice respite from his long list of dr. appts this month.  His quarterly check-ups with all his specialists start up again in November so we have quite a few appointments coming up before the end of the year.  I confirmed Rudy’s next trip to the pediatric dental clinic and heart transplant clinic (both at UCLA) and they fall on the same week in December…too bad I couldn’t get them scheduled on the same day.  🙂

Just two days after celebrating Rudy’s 7th birthday, we were blessed to celebrate the work of the Santa Barbara Rescue Mission at the annual Bayou fundraiser…this year we partied like it was 1950 and all on the organizing committee agree it was the best one yet.  It was a truly inspiring afternoon and made me so proud of Rolf and his team!  🙂

We’ve had a rare two weekends in a row down in L.A. for a variety of reasons and our trip last weekend included a last minute visit to Azusa to see Wilson.  What a treat it was to give him a hug and catch up a bit face to face.  He’s doing really well…he loves being at APU, is making a whole host of new friends and likes his classes.  He is challenged by ROTC in many ways but really loves it.  Rolf and I look forward to our weekly Sunday phone calls with Wilson and his updates are mostly filled with ROTC stories.  🙂  As you can imagine, he is making quite a name for himself.  A couple of weeks ago, his squad had a grueling try out for the Ranger Challenge team.  During the long run dressed in full fatigues, boots and weighted back pack, Wilson started to sing to himself to focus his mind on something other than the pain.  When he stopped, his team mate ahead of him told him to keep singing…so he did and he sang all the Johnny Cash and Zack Brown Band songs he knew by heart.  Before he knew it, his commander at the end of the line asked who was singing.  Thinking he was in trouble, he owned it right away and apologized to which the commander said “Keep singing…louder!”.  Ha Ha  I’ve nicknamed him the Singing Soldier.  I pray he finds great favor at every turn in his ROTC experience…so far it seems he is.  (P.S. He made the Ranger Challenge Team)

Rudy attended his very first GVJH cross country meet this past week to watch Olivia compete.  We went to cheer on the Mariners having no idea where Olivia would rank within the pack.  We were shocked to see her shoot out to lead at the start and keep her lead for most of the race.  She and her teammate (also named Olivia) led the pack and ran head to head for a thrilling finish with our Olivia winning by one step.  It was so much fun to watch her and it took me back to the hundreds of races I went to to watch my dad compete…I saw alot of G’pa Dick in Olivia’s stride.  Olivia’s coach named Rudy their official team mascot!  🙂  I think Rudy will have some more cross country meets in his near future.  Ha Ha Ha

Maxo has his first pre-season hockey tournament next weekend so we look forward to lots of hockey in the near future as well.

Here is one of the lows:

My college roommate and long time friend is losing her husband to cancer…it sucks and it breaks my heart…she sends updates and at the end of her updates she leaves the reader with a “to do” list because, as she says, fretting about their family isn’t productive.  I’m struck this evening by a couple of her “to dos” in particular:

“Shed a tear. Life has a tendency to break our hearts but somewhere along the way in America we decided to bottle up the heartbreak. Let it flow peeps. And even better, share those tears with someone close to you.

Stop doing for as much time as possible this week and simply be. The world needs more contemplation and presence…”

I agree with her.  As much as I want to run away from the things that hurt and distract myself with tasks, I’ve learned from my experience with Rudy and am reminded by Rochelle’s admonition that it’s best to embrace the pain, shed those tears and be in the moment…there is much to learn in those moments and so much beauty to behold – even in the midst of heartbreak.

Praying for comfort and peace for all my friends in need tonight.

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…