At several points during Rudy’s hospitalization, I wrote of the challenge it was to focus on work and life here in Santa Barbara when Rudy was having a tumultuous episode down in the ICU. Even though we’ve had a long stretch this summer with Rudy safely at home, I have still had to battle episodes of distraction. I never know when they’ll hit…just that they do with weekly if not daily regularity.
Sometimes it centers on Rudy’s condition and the unknown battles that loom ahead. This came to the forefront of my mind at “Back-to-School” nights this week as we let teachers know about our family’s situation and the disruption the kids will have to face in the coming months when Rudy has to go back to UCLA. We don’t know exactly when; only that it will have to happen. It has to. Part of me says it can’t be as challenging as it was last time—the Glenn is a much less complex surgery than the Norwood—but it’s still heart surgery on an infant whose history contains a myriad of complications. For some reason, the prospect of getting swept along in ignorance like we did last time seems preferable to being informed a bit more about all that has to happen (and so many things that could).
I’m aware of the things that could happen not only from our experience, but from that of the community of parents we’ve discovered around the country who are dealing with HLHS and other congenital heart issues. And lately that’s what drives me to distraction. Reading of their battles stirs recollection of shared experiences I wish none of us would have to claim. My internet rounds each morning to check on Rudy’s buddies can leave me awed and agonized all at the same time. I see parents who display remarkable grace and courage in the face of terror. I often come away impressed by their fortitude in carrying on. I always come away impressed by the terror. There’s no limit to what this will ask of a parent. There’s no assurance that fighting with all one’s might will spare one the ultimate cost. We sojourn in the awful place where babies die; a place we’d all rather rush through only when absolutely necessary—if we can’t avoid it altogether. So somehow this community forms with the others who find themselves there.
And I hurt with them. I get carried into distraction when their battles get intense much in the same way I did when Rudy would be fighting through his episodes. Some days are marked by frequent checks for blog updates and emotions that surprise me in their intensity. Lately it’s been reading of precious Moriah and her parents’ anguish that ruins me for the day. A couple of weeks ago, I walked around in a stupor because of what Mason’s parents must have been feeling as the doctors told them there are no further interventions possible. Most readers know of the tears we’ve shed over Katie and lately they’ve been joined by those for Ethan the Brave, Bridger and Cali whose battles ended the way no one wanted to see. It shouldn’t have to be this hard to be a parent, much less a baby.
Although this is heavier stuff than I would ever have envisioned having to live with for such an extended period of time, one learns to live without a somber pall cast over all of life. These friends (and others, like Owen) have taught us that even within the darkest of circumstances, there is space for beauty, joy and laughter. Lose sight of this and you risk losing your sanity—if not your humanity. I’m learning not to second-guess my happiness over the progress we’ve reported on Rudy over the last few months. It’s not fabricated or ignorant bliss. From watching others, I’ve learned that you navigate this journey best by being able to feel contradicting emotions at the same time. I am truly joyful over Rudy and his progress and I’m gravely concerned by the seriousness of his condition.
I see with fresh eyes that some of the scriptures we deem “upbeat” (Rejoice in the Lord always—again, I say, rejoice! Phil 4:4) and tend to set to happy melodies, don’t actually emerge out of carefree episodes; but extremely trying ones (Paul sat unjustly in prison when he wrote this). The rejoicing does not come from the absence of pressing concerns but emerges as a resolve in the midst of them. I suppose there will be episodes where we are better at this than not.
Some may have noticed that our posts aren’t as introspective since Rudy’s out of the hospital. Life certainly has more activity and less stretches to ruminate than we had in the ICU, but the thoughts and feelings are still “there” and can take over at a moments notice as we walk with other families.