“Life may not be the party we hoped for, but while we’re here we should dance.”
We’ve shared before about how this journey with HLHS thrusts us into ironies, dichotomies, and couplings of things one normally wouldn’t put together. On Saturday evening, this included the surreal experience of wearing black-tie attire in the PICU. Our dapper appearance strayed from the usual dress code of the parent tribe (jeans, sweats and t-shirts with unkempt hair and glazed over eyes). Dressing in the little PICU bathroom in Rudy’s room proved a challenge…the only full-length mirrors are inside of the elevator doors so we weren’t quite sure how “put together” we looked until we were on our way out the door.
What was the occasion? We were invited to attend Gala del Sol; a benefit for “Camp del Corazon”. Camp del Corazon is a camp founded by one of the cardiologists here at UCLA, Dr. Kevin Shannon, that provides year-round opportunities for children with heart disease. You may have heard of this camp if you’re an “ER” fan as it was highlighted in one of the last episodes in March. We first heard about the camp when nurse Fay popped into Rudy’s room back in October and told us to put the summer of 2015 on our calendar. When we asked why, she said “because that is when Rudy will be old enough to go to camp”. 🙂 Many of Rudy’s doctors and nurses donate their time staffing the camps each year. Only recently has it sunk in that Rudy’s condition will likely limit the things we’ll permit him to do in life. As much as we might want him to have adventures, realistically we’re not sure how comfortable we would be sending him some place without access to skilled medical care. Well imagine a camp staffed by the top nurses and cardiologists in the world–where no kid with heart disease has ever had to pay to attend. Where kids with limitations don’t sit out.
Saturday’s Gala was particularly special as our favorite surgeon, Dr. Brian, was recognized as the 2009 Medical Honoree. That alone was reason to be there. It’s not lost on us that we can say “this man saved our son’s life” without any tint of hyperbole. We were priviledged to be involved with Rudy in the tribute video and so thrilled to meet Brian and Noel’s extended family (who, we were humbled to learn, are followers of Rudy’s Beat). Originally, Rudy was supposed to be in attendance and we feared that his current setback would shelve that plan for all of us. But with Rudy’s condition improved yesterday, the docs and nurses back at the hospital encouraged us to attend. Rudy, after all, was in good hands. So, with the older kids settled at home in SB with one of their favorite friends (thanks Nina), with Rudy safe in the PICU with special company (thanks Pammy), we decked ourselves out in a tux and “little black dress” and headed off to Universal Studios for the big event.
We enjoyed the hospitality of Nurse Aliza and her family and were pleased to see Rayme and Brett (Logan’s mom and dad) again–who we haven’t seen since his discharge in November! Just as stunned as our doctor and nurse friends were to see us dressed to the nines, it was a change to see them in something other than scrubs and white coats. The evening gave a hopeful vision for Rudy’s future which served to renew our energy for the journey ahead. One of the most compelling moments was a camper video in which a precious 9 year old girl and her mother told of the 25 surgeries she’s had and how they live fully aware that life can be unexpectedly interrupted–or come to an abrupt end–because of her condition. It was impossible not to hold back the tears as the camera followed her dancing around the house with her sisters. Amidst the blond tresses flying about, she jumped close up to the camera and screamed out “I LOVE LIVING!!!!!”
We don’t often get to put on clothes like we did last night, but what stays with us is the new array of emotions that are becoming part of us: We wish HLHS never struck us, but we are so glad for these talented, loving guides. We wish our son didn’t have this limitation on his life, but we saw kids whose lives have fullness of their own unique kind. We don’t ever lose sight of the severity of Rudy’s condition, but see that life still holds grounds for celebration. It might not be the party we hoped for, but we’ll figure out how to dance here.
Rudy's Beat 
yes, as I read and write with tears, I am so happy for you;that you had a night to celebrate. Hopefully Rudy will beable to do more than you ever imagined. There is so much more today in life for children, like Rudy. We have a Camp Happiness Nick has been able to attend every year, we never imagined years ago when his Mom was a camp counselor that she would some day have a son attending. prayers for strength and a speedy return to home for Rudy. Nick’s Grandma
Rudy, did you wonder what all the fuss was about? Don’t your mommie and daddy look spiffy in their formal wear? It is about time they dressed themselves in costume rather than you! Seriously, I think you all look so handsome and beautiful! I am sitting at my desk writing a letter to Wilson, Max and Livy. Since you get mail via this blog, they should get mail, too, don’t you think? We love you all, so much.
As always, beautifully written and expressed. Thank you for sharing these lovely thoughts and experiences with all of us. And you are indeed figuring out how to dance at this particular party. Sometimes it’s a slow dance, with time to linger and reflect. Sometimes it’s a mad scramble just to keep in step! But you’re dancing. And you’re doing it wonderfully well.
The Geyling men do clean up pretty well, don’t we?
Hot diggity, check out that hot looking couple! Brad and Angelina have nothing on you two. So glad that you got to share in that special night together. I hope Rudy will be coming home soon. Love, K
Wow, what a wonderful event and worthy cause! It is so sad that things like HLHS have to happen in order for us to realize what is really going on outside our little circle. Nick has attended a special education camp in town for the past 6 years…wow…I didn’t realize it was that long! I was a counselor there MANY years ago and always knew it was a special place for kids to feel the freedoms and abilities that many times where not available to them due to various disablities. But it didn’t matter if you spent your days in a wheelchair, you were still going swimming and horseback riding and dancing! I’m so happy that you were able to attend, and happy to see that Rudy is holding his own and in good hands! You two looked great! Looking forward to watching Rudy overcome all the obstacles that may TRY to stand in his way!
Continued prayers!
Okay…So now I will admit to my years-long ER fixation. As Mark and I watched that final episode with the “heart camp,” I made him stop and rewind for the part when one little girl was rattling off, “I’ve had the Norwood, the Glenn, etc.” I said, “Those are Rudy’s surgeries!” I don’t know how well TV portrayed reality, but it sure looked like a wonderful offering for kids with ongoing heart challenges. What a hopefully fun picture to imagine Rudy at camp in 2015!
Sending some love and prayers your way!!You guys look great!!! WOW
You both look soo beutiful and handsome.
Glad you got to go to this special event.
Hope you can go dancing more often wihtout the little guy in the PICU
Kisses and prayers Oma
You guys look as good, if not better than you did on your wedding day. You need to get dress up more often. Besides it makes you look a lot younger. I love you and pray every day for Rudy and the family. Love, Dad
OMG!! Rolf and Trish, you are a couple of hotties!!! I love this post too and how wondeful to hear about Camp de Corazon (Heart Camp).
I love this statement too “Well imagine a camp staffed by the top nurses and cardiologists in the world–where no kid with heart disease has ever had to pay to attend. Where kids with limitations don’t sit out.”
It reminds me of what St. Jude’s Children’s Hospital does for families whose childen are going through cancer. No child is turned away for his/her inability to pay!! God really sends many angels to bless families in unimaginable ways!
Continued prayers for all of you! For now though, go out and shake those booties!
Tanya
Cam’s gone to Madden Open Hearts Camp in Massachusetts, and had a fabulous time…yes, you’ll want to circle 2015 on the calendar!
What a beautiful couple! I pray that you will have many more opportunities to dance–and dance with Rudy as he continues to grow up!
Rudy – your parents are hot! Thank you for choosing to dance and allowing us all to smile with you.
You guys look aweseome! …not so worse for wear…..such a glam couple! I’m glad you could do something special and get away…..
May we all learn to “love life” more….
God bless you, a beautiful couple!! Love, Jane and Joe
So glad you got to get dressed up and have some fun, and for such a worthy cause. That team is really very special, and so are Rudy’s parents! And so good looking!
Here’s praying for Rudy to be home soon!
you are beautiful in black tie and the little black dress – and equally beautiful in t-shirts and sweats! what a fun way to look forward to Rudy’s camping days!
xoxo L.
What a beautiful couple. love to you both.
I think you two should always dress like that. . . Beautiful! Rudy could get used to seeing Mom and Dad all glammed up! So glad you had a chance to get out.
Y’all look wonderful. Thanks for sharing such a beautiful night with us!
WOW! What a special evening you got to be a part of! So glad you were able to go. It sure is inspiring to read all your words on the blog. Thanks for inspiring us! Love and prayers to you – The Borkovich Family
WOW!! There were some People Magazine shots there!! You two “clean up good!”
Your blog today really hit me hard. I had assumed that once Rudy got through the next few several surgeries that his prognosis was excellent: Full Steam Ahead! I am not sure what to think now. I’m a little distressed. But then again, look what the Lord has done! Look at that beautiful baby and how is growing and getting stronger. Yeah, there is the occasional setback, but he is still going forward.
I think you all will be dancing! Everything from the Foxtrot and Waltz to Hip Hop.
Blessings!
Much love and Many Prayers!
God bless you. We are praying for you.
Love the Broadley’s