I know I say this every year but I can’t believe it’s October 1st and I really can’t believe today is Rudy’s 7th birthday. It has been a full day for sure but full of fun!! This year was different in that it really seemed that Rudy anticipated his birthday in the days leading up to today. His speech therapist took advantage of it being his bday week and worked on birthday related vocabulary words and dialog during their sessions earlier in the week, our neighbor next door brought over a giant Mickey card and balloons yesterday that we used to decorate last night and Rudy helped me prepare bottles of bubbles to take in to his classmates today! Rudy was clearly excited this morning on our way to school and he soaked up all that today held for him! Precious!! Thank you for all the FB messages, texts and phone calls!! Rudy can’t help but feel loved and we are so thankful for another birthday milestone for him…something we absolutely don’t take for granted! Happy Birthday Big Boy!!!
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 celebrations continue in the Geyling household…it’s hard to believe that Rudy’s SEVENTH birthday is just a week away and with every birthday, there comes a deepening of gratitude that is difficult to put into words…honestly. As a caregiver of someone with special needs, I find it takes a concerted effort and, at times, a daily choice to battle entitlement over certain things and services I think we should have as well as not take any of what we do have for granted. Like everything else, it’s a constant balancing act to keep it all in proper perspective. Birthdays are no different…none of us are entitled to our next birthday and, therefore, the addition of another candle on the cake shouldn’t be taken for granted either. In Rudy’s case, the simple milestone of a birthday is less about looking ahead at all the future promise of the new birth year (as birthdays seem to be for my big kids) and is more about looking back at all that has happened in the years leading up to his big day…and being profoundly grateful. :)
It has become our family’s tradition to celebrate Rudy’s birthday by helping to raise awareness of Congenital Heart Defects (CHD) and funds to support organizations that help kids like Rudy. “Team Rudy” has raised over $50,000 since 2010 for the American Heart Association alone! Amazing! We are still very much behind the work of the AHA and look forward to continued partnership with our local AHA office staff but we are shifting our fundraising focus this year to Camp del Corazon – an organization that we have supported personally for the past 7 years.
Camp del Corazon is a non-profit organization that provides year-round experiential opportunities for children (ages 7-17) faced with the challenges of growing up and living with heart disease. All of its programs are offered to participants free-of-charge and are supervised by a volunteer staff which includes certified RN’s and physicians (many of whom are Rudy’s doctors and nurses at UCLA). It’s primary summer camp is located on Catalina Island, 22 miles off the California coastline. Children from all over the country who go to camp get to experience a “typical” week at summer camp (not available to heart kids in a traditional camp situation) that includes ocean fun, camp fire silliness and cabin shenanigans …a camp environment made safe with a CardioThoracic Unit set up onsite for observation and care of the campers! When the camp started in 1995, it served just 49 campers. Since then, the camp has expanded to serve 300+ campers annually and is looking to add to that number each year.
We know many of the volunteer medical staff and some campers personally and have seen first hand the good that this organization is doing. Camp del Corazon doesn’t just give kids a summer camp experience…it provides support on so many levels…creating community, building confidence and opening up the possibilities of a much bigger world to a group of kids who often feel isolated and different.
We have chosen to highlight Camp del Corazon this year because this is a BIG year for Rudy…as he hits the 7 yr milestone, he becomes eligible to be a camper! Many have asked in the past for an opportunity to give to an organization that will benefit Rudy directly and this is that opportunity!! We look forward to sharing with you Rudy’s extraordinary camp experiences in the years to come!! :)
We hope to walk in the CdC Reunion 5K Walk/Run on October 24th in North Hollywood. We invite you to join our fundraising efforts for this event if this is of interest to you but, as always, we don’t want you to feel ANY obligation to donate. Please take a minute to learn more about Camp del Corazon at www.campdelcorazon.org or click the link below to find our family’s fundraising page:
(If you prefer to not donate online, we are happy to accept cash or check donations that we can turn in personally at the walk. Feel free to mail donations to us at 6250 Avenida Gorrion, Goleta, CA 93117)
Thank you for your generosity in the past and thank you for following our journey with Rudy all these years!! Honestly, when Nurse Faye bounced into our CTICU room shortly after Rudy was born and enthusiastically told us about Camp del Corazon and how Rudy would get to go some day, I had a hard time envisioning that day and now here we are!! This is an exciting season for Rudy and we embrace each day for the gift that it is!!!
P.S. A BIG THANK YOU for those who have already donated!! To date, we have raised $2870.00 of our $5000.00 goal!!! Woo Hoo!!! For those who choose to donate, keep an eye out for the traditional thank you from our family via snail mail! Ha Ha :)
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.
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:
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…
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.
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…