With the dawn of the New Year, it’s fitting to take stock of our situation and do some assessment. So much has happened with each week; and sometimes each day has such unexpected twists and turns that, as I drove down the coast today, I tried to assess things on a larger perspective. Trish and I often find ourselves trying to give answers to general questions people naturally ask about Rudy’s condition. As natural as these questions might be, they are difficult to answer in Rudy’s case. We’re encouraged because he’s making progress so we can’t say he’s doing poorly; but is it accurate to say he’s doing “well” when he remains in an ICU facility reserved for seriously ill children.
This week, I realized the relevance of the Stockdale Paradox (Collins, Good to Great) to our situation. Admiral James Stockdale survived an extended POW ordeal while many around him perished or went insane with waiting. He credits his ability to maintain a dual mindset. First, he stoically confronted the brutal facts of his reality. Second, he held an unwavering faith that he would prevail despite the difficulties. For Stockdale, the brutal fact was that he was inhumanely imprisoned in an inescapable remote location without any assurance that his comrades even knew he was still alive. Yet, never losing site of this, he lived life with a mindset that he would one day be free. He speaks of the many who weren’t able to do this—who mistakenly thought they’d be able to escape the guards and then flee into an unknown jungle with no strength, gear or idea of which way to run; or who held forth arbitrary deadlines for release (“we’ll be home by Christmas”) only to get more demoralized as they passed with no change.
I’ve found it helpful to apply Stockdale’s mindset to our own situation. In confronting the brutal facts of our situation I don’t start with a scenario as grim as his, but we constantly keep in view the fact that Rudy is facing some very serious circumstances—just this week, HLHS claimed the life of another child here (even though he had passed through several of the milestones we haven’t even gotten to yet). It would be delusional for us to get complacent or lulled into believing that this is going to be easy: Rudy is facing something that should never be underestimated—it kills kids.
Yet, we are kept going by a sense that we will prevail over this. Everything I see the team doing is done with this in mind. There’s no trivializing what we’re up against, but every step is done because of a belief that we can prevail in the endgame—he will come off of all these machines, breathe and eat on his own and leave this hospital. We don’t know when (but do we ever wish we did!), so having had a major holiday milestone pass with us still at UCLA, we’re not going to arbitrarily hold out another. So we’ll try to keep moving forward holding an appropriate balance of realism and hope without approaching the poles of delusion or despair.
This has involved our letting go of any of our own timelines, and once we’re able to do that, we can see that Rudy has made steady progress on one of his own. Today was a great day, where I held him for two stretches of over two hours (loving those NFL playoffs). The team removed his arterial line and the Foley catheter so he only has two lines going into him (compared to something like six at one point). The team has been very slowly weaning the ventilator rate down (12 hr steps at a minimum) to where it’s currently at 20 bpm and he’s managing well. They’ve decreased his pain meds to a very small dosage, more to ease his withdrawal from them than to manage any discomfort, so he’s alert and twitching around just like a baby should. The chest Xrays are clear of fluid (we’ll see how that holds once they start feeds again). This week he weighed in at over 11lbs, which means the nutrition is doing some good—the bigger he is, the better chance he has of getting past some of these milestones.
Does this progress mean he’s clear of danger? No, but it does bring realistic hope. We’ll take it and thank God for it.
We are still praying for you little one and your whole family too.
Hugs and kisses to all.
Rolf, thanks for reviewing the “brutal facts” reminding us that HLHS is an intensely dangerous and serious disease and that only the earliest battles in this war have been fought. Thanks, too, for sharing the hope that you have (and we all share) in the ultimate outcome….Rudy at home with his family. What a blessing to have that hope grounded so firmly in our faith, enabling us to sincerely thank God for where Rudy is today. Thinking about, praying for and loving you all!!
Nice realistic assessment of your situation. I am thankful for the progress little Rudy is making and I continue to pray for all of you.
Being here with Rudy’s family certainly emphasizes the sacrifices each of them is making in their normal routine…one a family never expects to make. Still through it all they are patiently enduring the upside down ramifications of the situation in which they find themselves. Wil takes leadership in helping Dick and me find our way around town, directing us in finding the tools and utencils to get things done and running all of the electric gadgets, etc. Each of the children are very self sufficient in doing their personal resonsibilities as routine. Rolf and Trish are upbeat ALL of the time and handle the pressure with maturity and deep faith. I am so proud of all of them. Whatever God is trying to build or showcase in the character of this sweet family is for His glory. I pray that all of the 60,000 plus hits on Rudy’s Beat is being used as a witness to the strength one is supplied while walking through the valleys of life. We await the mountaintop part of this journey. Get well soon, little Rudy!
So warming to read Grandma Jo’s note about your family. What a witness you have been while you all take this ride with God!
Glad to hear of the progress! Continuing to pray for all of you on this journey. It is so hard for us to be so far away. We want to be on the journey with you, but it feels more like we are trying run behind the caboose with one hand on the railing!
Rolf and Trish,
I’ve lurked about since last May when I began supporting Katie’s family here in CT. I have a son who is 9 and living with HLHS. While each HLHS child has a number of other anomolies…there is that commonality that they all share. And I say to you that my son is LIVING with HLHS. He lives to the fullest…plays baseball, swims, chows on junk food, and plays Rockband until he’s way past his bedtime! It can be done…and Rudy has every chance of being a child who is living with HLHS.
When Nick was a baby, my alone time was my drives in the car. I talk to myself and God. I took that time to yell, cry, dream, whatever! There was a song that my husband and I especially liked…by Mark Shultz. The name of the song is “He’s my son” and it just spoke to every feeling of frustration we experienced.
Prayers for Rudy’s progress in 2009!
Dawn
MOm to: Nick 9 HLHS & Kaylyn 12 HH
My heart continues to hold tight to God’s will and plan for Rudy. I sometimes feel pent up with emotion, as I try to place myself in Trish’s life, with her Dad and Rudy. Your strength, to try to “handle it all”, goes beyond what I can imagine. It can only come from our Lord. You are both examples to the world, of how your walk with God, transcends the impossible.