I’m a freak! I have an absolute mountain of chores and paperwork that I simply MUST get to today (my first full day at home in over a week) and I’m glued to GMA’s coverage of the royal wedding and spending WAY too much time trying to figure out how to print the Official Royal Wedding Programme that was just released to the public! Yep, I’m a freak…
Longtime friends know this about me…my parents and I were on a vacation when Prince Charles and Diana wed in 1981 and I have a very vivid memory of sitting in our hotel room watching the wedding live in the middle of the night. I soaked up everything Diana and when she died, again, I stayed up to watch around-the-clock coverage (remember Grace?). The hoopla over Prince William and Catherine’s wedding has been a fun distraction and, shamelessly, I will be up watching all the pomp and circumstance live like I did 30 years ago! Ha Ha
Rudy is pretty uninterested in all that but he is keeping himself very busy these days as his world here at home becomes gradually bigger…
Not only is he getting around more and more at home, but he is also getting around on the town too…he had another celebrity meet and greet at a breakfast Rolf MC’d last week…can you guess who it is?
After the thrill of meeting Kathy Ireland, Rudy had a blast watching a flurry of children hunting for easter eggs at church on Sunday. A fun Rudy-memory-maker for the big sibs especially…
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!
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…
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!”.
It’s hard to figure out what the most memorable day of Rudy’s journey has been for us. We’ll never forget the adrenaline of his birthday (10/1) or the anxiety of his Norwood Day (10/6), but there’s nothing like the elation we felt on April 7, 2009 when we finally made it out of the hospital on a rainy un-spring-like day like today. It’s hard to imagine that was two years ago, and sometimes it even gets difficult to recall the seven months he battled to get out of that hospital–but not enough that we start to take life with Rudy at home for granted.
We’ve already read through the posts from that week and watched the slideshow of that incredible day a few times and probably will a few more. When we left the hospital, the team hoped that we would be able stay away for six weeks before needing to come back for the Glenn procedure. Rudy showed his trademark disregard for anyone else’s timeline–we were back in two weeks (but not for the Glenn–we still haven’t had that).
Not much has turned out like we thought it would, which carries its share of heartbreak. But there’s also much cause for rejoicing. The delicate little kid with the stringy curls and battle scars who fought his way home is a far cry from the happy, robust and squirmy boy we have today. His bewildered stare has turned into a smile for everyone he meets–there are times where he just seems to exude love and joy from every pore. It’s been a journey of concern and anguish, but also richness and beauty like we never imagined; and we’ve drank deeply from that these last two years.
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!
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.
Trish’s Happy Place…a visit to WalMart and a stop at Chick-fil-a…seems to be a happy place for Rudy too!