The Hope of Heaven

: Greg’s latest…Thank you Greg!

A neat thing happened to me this week…I heard a song that really touched my heart (brought me to tears while I was driving) and I was disappointed I didn’t catch the song’s name or the artist who recorded it because I wanted to find it online and then yesterday I got an email from my good friend Grace that simply said “I can hear you singing this song” with the link to “Blessings” by Laura Story…THE song…the one I heard and couldn’t find! How fun…I love it when things like that happen and the timing of Grace’s email couldn’t have been more perfect as the song expresses so beautifully things that have been on my heart this Holy Week…a deeper, more experiential understanding of the beauty of Christ, hope in heaven and how it all intertwines with human suffering, heartbreak, struggle.

With each passing day, I’m amazed at how much energy Rolf and I spend thinking…it feels, sometimes, like our minds never stop spinning as we think through all of the practical, emotional and, yes, even the hypothetical details in caring for Rudy’s special needs, in caring for our family as a whole and in caring for the needs of Rolf’s work at the Rescue Mission. Rolf seemed deeply pensive recently and when I asked him what he was preoccupied with, his response was “I’m trying not to think”. Indeed!!!! If only we could shut down like we do our computers…just for a bit. We started seeing a pastor in town about a year ago to help us process all these things we spend our time thinking about and feeling whose wise and thoughtful counsel has been a true blessing. I was sharing with him one day about the potential of losing Rudy and how I had come to terms with that reality for Rudy’s sake but was struggling with my role in the equation…how I could see (and believe with all my heart) the wins for Rudy but, okay I’m going to be brutally honest here, couldn’t see the wins in it for me. I went on to explain how, to me, life for Rudy this side of death means a life with a family that absolutely adores him and has the capability and resources to care for him and life after death means eternity in heaven…whole, face-to-face with God, free of the things that restrict him now…win/win. But in my darkest moments, I confessed, I struggle with the knowledge that my role puts me front and center in watching his decline (should that be the pathway we walk) and then tremendous, unimaginable, life-sucking loss…no wins. After my drawn-out, twisted ramblings, he said “there are wins, you know, what are they?”. I shrugged my shoulders and out of a sense of obligation I listed things like “the joy of having him in my life – even for a short time”, “the many amazing lessons I’m learning in the process”, “greater dependence on God which is drawing me into deeper faith”, “the compassion and sensitivity toward people in need being cultivated in the big kids”, etc…all of which are true but hold little consolation, really, when life feels its darkest. But Denny wasn’t satisfied, I hadn’t hit it yet and he encouraged me to go deeper. Confused, I said “Denny, I don’t understand. What do you mean?” and very simply he said “Your wins are the same as Rudy’s!”. And in an instant the tears of pain and heartache that were streaming down my face led to tears of reassurance of and longing for…heaven! I had an eternal perspective on Rudy’s life and a very temporal perspective on my own!!! Because of Christ’s amazing sacrifice on the cross and triumph in His resurrection, heaven is MY win too. It’s a truth I’ve known for a very long time and it sounds so simple but there’s no way I can describe in words the profound depth this simple truth rooted in my heart that day – it was transforming. Sure, I still struggle with fear and how we’re going to get from point A to point Z but when I find myself slipping into mind-spinning thoughts, the thought of heaven and all that awaits me there pulls me up and onward…one step at a time.

Which brings me back to the song “Blessings”…here’s a link: Click here! Take a minute to listen and pay particular attention to these lyrics tucked in the bridge and final chorus…”When darkness seems to win,we know the pain reminds this heart that this is not our home…What if my greatest disappointments or the aching of this life is the revealing of a greater thirst this world can’t satisfy.” Yes, YES, this is it…this is at the heart of all the challenges we face, isn’t it? I pray a special blessing on you this Good Friday…may you know this hope we have in Christ and may you be reassured that your deepest thirsts will one day be satisfied. A blessed and happy Easter from our family to you!

A Few New Firsts

With just 6 weeks left until summer vacation, we are finding ourselves thrust into the end-of-the-year tidal wave of activity…special school performances and trips, preparing for state testing and two very special graduations from elementary school and middle school for the boys, doctor appts, immunizations and keeping everyone motivated in general as the final countdown approaches. The challenge, actually, will be to keep myself motivated…with all the heightened activity this spring and preparations for the big boys’ enrollment to their new schools NEXT year and our efforts in getting some of Rudy’s future therapy needs figured out, etc, etc, etc, I’m pretty much ready for the lazier days of summer!!!!

Rudy had his routine appt with pulmonology at UCLA on Tuesday. It’s always good to check in with the folks at UCLA but the exam didn’t generate any new news or plans. We can’t move forward with decannulaton of Rudy’s trach until he has his sleep study…I’ve been working to get the study scheduled at Children’s LA for the past 2 months and it still isn’t on the calendar…we’re waiting for their pulmonologist to review the order. Once we have the doc’s confirmation, the earliest available slot isn’t until June so we could be waiting a few months. (patience…patience…patience)

We sure had fun celebrating Wilson last week on his 14th birthday which offered a few new firsts for Rudy including….

…his first “Looking Good Santa Barbara” clean-up day!

This annual, city-wide clean up day fell on Wilson’s bday this year and he initiated our family’s participation as part of his day ‘o celebration! We enjoyed working alongside some friends from church on a gorgeous Santa Barbara day and got some great exercise weeding and cleaning up a local park…

…and his first “Teenage, Boy/Girl Party”…

Gone are the days of themed bday parties with silly games and novelty cakes for Wil…this year he asked for a gathering of friends to “hang-out” and eat pizza & smores! It was such a blast to watch Wilson host his friends…making sure everyone got drinks and food, setting up the music system and keeping the tunes rolling all night, paying attention to little details and having a great time. Although we were prepared to set Max, Livy and Rudy up in another room with a good movie to give Wilson and his friends some space, they actually fit into the mix sweetly and Wilson was gracious to let them stay and “hang out” with the cool teenagers the whole evening! Rudy, of course, LOVED the throng of pretty girls that surrounded him a good bit! Ha Ha Rolf and I spent most of the evening sitting on the couch twiddling our thumbs as there were no games to facilitate or elaborate scavenger hunts to produce, but instead we got to sit back and watch the dawning of a new era in the Geyling household…

I tried to sneak in a little festive ambience but the hobo-clown got vetoed and promptly taken down!!!

The sun has set at the end of a long day and so has Rudy...

We had a bit of a breakthrough with Rudy’s interest in eating this week. Rudy has transitioned over the past several months from full-on food aversion…to a passive resistance to us putting anything in his mouth…to accepting small bites of baby food!!! He still gags if we put the spoon in his mouth or if he gets too big of a bite BUT if HE initiates contact with the spoon like he started doing with Rolf this week, he’ll come back for more as you can see in this video…

Could this be the dawning of yet another new era in the Geyling household? I know, baby steps but “yeah!”.

Max The Diplomat

Max impressed us this past week with a couple of bold moves on Rudy’s behalf that left us wondering if he’ll run for office one day. 🙂

The first occured the last day of school before spring break. It was the last Friday of the month and, therefore, award assembly day at the elementary school. I was notified earlier in the week that Olivia was going to win the character award for her class (Yea Livy!) and so I made sure I was there to cheer her on. I was also pleased to go to watch Max perform one of his acts as Student Council President – passing out the awards along with the school Principal and SC Vice President. The monthly award assembly is not something I generally attend as there is ALOT of applause as well as celebratory cheers and Rudy is not only hyper-sensitive to the sound of applause but he can get himself so worked up that he goes into respiratory distress. Sure enough…as the first awards were handed out and the applause began, Rudy’s face turned red, the tears started to flow and his deep, panicked cries rang out loud and clear. I immediately stood up and began to gather our things preparing to make our escape out the back door when Max approached Mrs. Santiago on stage and asked if he could address the school. She quickly stood to the side and gave Max access to the mic. He then told the room full of students and faculty that his baby brother was in the audience, he pointed Rudy out, proceeded to explain that Rudy doesn’t tolerate applause and asked if everyone would sign the ASL sign for “deaf applause” instead which consists of holding your hands in the air and twisting them back and forth a couple of times. I was blown away by Max’s quick thinking and confidence to follow through with his instinct!!! I was also touched that Mrs. Santiago trusted Max enough to give him the mic without asking him first what he wanted to say!!! And how sweet of the school community to comply and wave their “flying fingers” for Rudy’s comfort!!! Rudy’s response was swift…he calmed down and although he was still physically shaken, we were able to stay seated for the entire assembly and all the vigorous (but thankfully not thunderous) applause!!!-Thanks Max

The second occured today when we had a Santa Barbara moment and just happened to run into Rob Lowe at one of our favorite local taquerias. Although a ton of celebrities live in our community, we don’t generally frequent the same establishments so this sighting was a big deal. Being a “brat pack” fan in my youth, I was pretty giddy and wanted to get a picture of Rob with Rudy but was too shy to ask. Before I knew it, Max walked right up to him as he and his party left the restaurant, said “hi”, shook his hand and asked if he would come take a picture with his baby brother. No inhibitions…so confident! Rob Lowe couldn’t have been sweeter…he came right over, got down on Rudy’s level, gave us time for just the right shot and took interest in the big sibs too. Rob, if you google yourself and happen upon this post, THANK YOU for being so kind to our little superstar!! And thank you Max for going for it and making things happen!

Please put in a good word for Max with President Bartlett!!

Two and a Half TODAY!

Our spring break has been fun…after the rainy day hair styling extravaganza last Saturday, the weather cleared and we enjoyed a trip to the drive-in double feature one evening, a visit to the zoo with friends, a couple of afternoons at the beach and a trek to Ventura for a WalMart run and there is talk of setting up a Lemonade/Avocado stand later today! Rudy has tagged along for most of it but did stay home with his respite nurse for the beach outings.

I’ve really been blessed by how well the kids have gotten along this week. They certainly have their moments of sibling strife but this week there just seemed to be an atmosphere of finding joy in one another and I treasured it. They all sure smothered Rudy with kisses and hugs and he literally glowed with every glance from a big sib. Wilson and I were playing with Rudy yesterday and at a particularly poignant moment in our discussion, I asked Wil if he ever thinks about losing Rudy and he said, “yeah, alot”. I told him that I was sorry he had to live with that kind of worry and he said it was okay because he wouldn’t change a thing…he wouldn’t have wanted not to have Rudy at all. Yep, I agree!

Today marks 30 months for Rudy…2 1/2 years old! Another monthly milestone and 30 months for which we are profoundly grateful. Each day that turns into a week that becomes a month with Rudy is an absolute gift – a miracle that we pray we don’t ever take for granted.

rudy and his chair — Happy 30 months Rudy!

gorilla and rudy — 'Bout the only animal Rudy could actually see at the zoo and even then he was more interested in watching the kids look at the gorilla!

Trish’s Happy Place…a visit to WalMart and a stop at Chick-fil-a…seems to be a happy place for Rudy too!

Spring Break 2011 – Day One

Our spring break is starting off wet and dreary as it is raining…again…here on the central coast! Although the kids got outside for a bit today, most of our day was spent indoors purging and sorting the kids’ bedrooms (a spring break tradition – ha!). I told the kids that if we got our “jobs” out of the way this weekend then we could play the rest of the week. They did a pretty good job so far.

The other “to do” on our list for this week is haircuts…everyone needed one badly so I started with Rudy at 11am and it took me almost 3 hours to do all the boys and the big boy! I don’t dare attempt cutting Livy’s hair so she was the last to get her’s cut this afternoon at Fantastic Sams – we even splurged on some hair bling. Olivia decided to do a little hair styling on Rudy before we left and his bold fashion statement caught on…

haircuts1 — Fashion taken to a new level!

Things quickly took a turn for the absurd and poor Rudy had no say in the matter…

But, he sure liked the attention…

I sure hope our sun and warm weather return quickly…not sure what another day cooped up indoors will lead to!

Too Busy To Post

We’ve been so busy this week with our family scattered in all directions that we failed to get an update posted but all are back under one roof again and we’re staying close to home today as another “weather system” is passing over the coast.

Grandma Jo flew in last week just in time to help us celebrate Max on his 12th birthday…a fun-filled afternoon with friends, food and bowling! Then it was time to pack up and send Rolf and Max off to Catalina Island early Monday morning for Max’s 6th grade outdoor/marine education school trip called CIMI (Catalina Island Marine Institute). It just so happened that this was also the final week of dress rehearsals for Wilson before his school’s production of “Bye, Bye Birdie” this weekend, Livy had a few afterschool practices for her upcoming school performances and sprinkled in between all the shuttling to and fro, Rudy had a couple of doctor appointments. Grandma held down the fort keeping busy with the laundry and ironing and banked quite a few “Rudy hours”. Rolf and Max had a safe and fun week, the school musical was a smash hit and Wilson’s performance as an enthusiastic 1950s teenager was “spot on” and I’m starting the week off with all my laundry caught up so it has been a good week all around. 🙂 Ha

And then there is Rudy…happy, as long as somebody is paying attention to him and very happy now that he received the last of his synagis injections for the winter – brutal simultaneous injections in both thighs!! Our monthly cardio-appt with Dr. Harake showed no change in his heart status so we continue to wait…things are stable enough to wait 6 weeks (instead of 4) for our next appt. In the meantime we’ll focus on Rudy’s next sleep study and making progress with decannulation. Unfortunately there has been a delay in getting the sleep study scheduled at Children’s LA but we have the approval to move forward so hopefully we’ll get that on the calendar soon. I’m in no hurry, though…with spring break coming up in a week, I’m eager to have a fun, relaxed week with all the kids at home. 🙂

Grandma Jo will head home on Tuesday and life will settle back into a normal rythym after all the extra-special activities of the past couple of weeks…but, of course, “normal” doesn’t mean uneventful in this family so stay tuned! Ha Ha

program — Rudy got to go to the dress rehearsal since he doesn't tolerate large crowds OR applause! He liked the music!!

Wilson’s official “head shot”…these Jr. High productions are becoming quite sophisticated…

Wild CIMI fun…

Olivia’s rainy day pasttime…

Rudy's no dummy...he stayed indoors and played ball with Grandma!

Happy Valentine’s Day 2011

On this special “day of love”, we send OUR love to all of you – our dear family and friends who are sharing this journey with us!! Rudy’s life could be defined by his heart defect and limitations but those who know him personally or through Rudy’s Beat know that truly his life is defined by LOVE! How deeply blessed Rudy is to have you in his life…and we’re pretty doggone blessed to!!

As is tradition in our household, the singing of “Will You Be My Valentine?” was in full swing last night and this morning. You may recall when we introduced you to this little holiday diddy back in 2009. Well, the kids produced a remix for this year’s enjoyment!

ROCK ON!

Gettin’ Around

Well, here we are…another month has been torn off the calendar and we’re halfway through February already! Since our last post, we’ve had a couple of phone conversations with Drs. Tirakitsoontorn and Shapiro and a new, revised “trach plan” is in place. As it stands now, Rudy is scheduled for an overnight at UCLA on February 22nd. Dr. Shapiro will downsize Rudy to a 3.0 Shiley PED trach and keep him overnight for observation – making sure he tolerates the downsize okay. Once he safely adjusts, then we’ll schedule the repeat sleep study. Both Dr. T and Dr. S agree that the downsize will increase Rudy’s chances of passing the sleep study. We’ll see…

Rudy’s monthly cardiology appt was on Monday and nothing has changed. Dr. Harake predicts that we’ll spend the bulk of this year in “conservative follow-up”…there is no plan for a heart cath or any intervention at this point. He feels we should use this time to focus on decannulation (trach wean) and affirms our current plan with the docs at UCLA. So, unless something significant happens with his heart, no action will be taken.

Eventhough the logistics of Rudy’s direct medical care seem to be slowing down to a standstill, the “behind the scenes” details never lull. After getting denied a couple of times already, Rolf is working hard to get Rudy into the CCS (California Children’s Services) system. Because Rudy’s current therapy and nursing services through Regional Center will end when he turns 3 yrs old, we pray the resources of CCS will be available to him by then (October 1, 2011). Another big piece of the Rudy puzzle has to do with our most recent major family purchase…with Rudy now weighing in at over 33 pounds and still not close to walking, it became more apparent to us last fall that it was time to look into getting a medical-modified van – one that would accommodate his wheelchair. A church contact led us to a van in San Diego that seems to meet our need specifically. Since the medical modifications alone on these vans cost between $30,000-$50,000, we feel blessed to have found this van for $23,500.

We share the specifics because many of you have inquired how you can help us and, although we are reluctant to put it out there, helping us purchase this van is one very practical way. For those of you who might feel so led, our church has offered to receive gifts on our behalf to put toward the purchase of the van.

feb10 2 — On our way to this month's blood draw...in style.

Those who would like to gift our family can send a check made out to:

“Coast Community Church” at 4973 Via Los Santos Road, Santa Barbara, CA 93111 Attn: Geyling Family Van

Rudy got a special Valentine this morning from Gwendolyn. Gwendolyn is a local girl battling SMA and we have been sharing in each other’s journey on our blogs (www.gwendolynstrong.com). We also share a night nurse and Nurse Evelyn delivered Gwendolyn’s sweet Valentine last night…precious! Thank you Gwendolyn…we think you’re pretty darn cute too!!!

“Downward” Progress

‘Just a quick note to let you know that we saw Dr. Shapiro yesterday (UCLA ENT) and all looks good in her area of expertise. She said Rudy’s airway looks “beautiful” and even let me take a quick look down the scope – very cool. She’ll want to follow up with us sometime in April after the repeat sleep study (yet to be scheduled). Just like last time, if Rudy passes, we’ll plan a strategy for decannulation but if he doesn’t then we’ll want to make a point of seeing Dr. Shapiro more regularly until he is strong enough to wean. She did prescribe a bigger trach size since our big boy is growing out of his current size…which is why we’ve had such a time with his trach working itself out lately. The new trach tube size will be the same in diameter but longer so it’ll be more secure. ‘Hopefully this will eliminate the deluge of late night trach changes we’ve had recently.

Hey! Speaking of “deluge”, Rudy overcame another big developmental hurdle on Tuesday evening. Check this out!…Wunderkind can now get himself out of the sitting position when he gets tired!

After a bit of a plateau, it’s fun to watch Rudy in a season of rapid progress mastering new skills of which he is so clearly proud!…and all of this growth & progress is being supported by a shunt 2.6mm in diameter through which ALL of his blood is being circulated!! Amazing…thank you Jesus for each step forward (both big and small) for Rudy!!

It Might Get Loud!

Rolf, Rudy and I made it home safely from our check-in with pulmonology at UCLA yesterday. Rudy traveled well and was patient as we stopped to run a couple of errands on the way home but he is clearly most content at home as he proved today joyfully rolling around on the floor…literally ALL DAY. 🙂

This was our first face-to-face with Dr. Pornchai (Tirakitsoontorn) since Rudy’s failed sleep study, so we were eager to hear his opinion on where to proceed from here. We didn’t go in with high expectations–it became clear on our last visit that there isn’t really any therapy or drug out there that would help Rudy’s lung function and most of his recent consults have basically communicated the same thing–Rudy’s stable, but there is no plan–there’s just no way to address anything and move “forward” in his current condition. The failed sleep study seemed to take one of the only remaining steps forward (removing the trach) off the table. So it surprised us to hear Dr. T share that he’d like to give Rudy another turn and repeat the sleep study in about two months. The sleep study showed that Rudy was breathing from his stomach too much and the effort required caused his heart rate to elevate too much when the trach was capped. He’d like Rudy to use the speaking valve all day (which allows him to inhale through the trach but exhale through the upper airway) to see if this helps him over the hump.

One normally doesn’t think of the benefits of one’s kid having a trach, but it is a “mute button” of sorts. We’ve noted a few occasions where Rudy was flexing the golden pipes while the kids were trying to watch TV and the speaking valve somehow “popped off” so he couldn’t vocalize anymore. Of course his parents aren’t twisted enough to use it that way–perish the thought! But that’s not an option anymore, it’s going to stay in all day. Based on the noise in the house today, our little chatter-box sure is exercising something! This will make for some new dynamics in public settings (be ready for Rudy to throw in his two cents at church, friends!)

I’ll head back down to UCLA with Rudy next Wednesday for an appt. with Dr. Shapiro (ENT). As we’ve had those challenges with the trach coming out, we want to get her to check things out…so, we’ll take it easy this weekend and continue to enjoy the great weather we’ve been having.

Thank you for your concern and prayers!!