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.
14 thoughts on “Walking, rejoicing and hurting with others”
Rolf: You and Tricia might think about compiling all the Rudy’s Beat entries and write a book (in your spare time!). You’re both wonderful writers and you bring this experience to such life for your readers. I am in awe how you hold it all together. Most mortals would just collapse and crumble. You two are made of sturdy stuff!
You are spot on with your analysis of life and emotions. Living with and through HLHS brings your places that no one, not child, not adult, should have to experience. But there is so much in our world that is not “right” and yet so much of what is not “right” teaches us the most valuable of lessons. I think, over time, you end up distancing yourself from others in the same situation. It’s not because there isn’t that unique connection, but quite the opposite. Sometimes that connection gets so overwhelming, and you feel helpful, yet helpless at the same time. I cherish the moments of support I was able to offer Vickie and Alan, but I also know that their situation was different, and is different. I can’t take HLHS out of their lives or out of yours and that’s frustrating. To see the road ahead of someone and not be able to soften the stumbles…to just watch and wait…it isn’t fair, and it reminds us of the tightrope that we have walked ourselves. I think, over time, you will find a balance…there are those families who you will cheer on their victories and cry through their sorrows…but there will also be a point that you turn back to your own family and find peace. HLHS will always be connecting your with others, but “normalcy” and life’s rat race will help you find a balance that fits you.
Prayers for continued health and happiness for Rudy and your family!
And we stand behind you with prayers for the strength you need during the rough times and the wisdom to laugh during the good times.
Thanks for that thoughful message.
We too have walk the same halls as you and your family and have felt the uneasiness that the unknown brings. Our hearts go out to you all everytime Rudy has to go back to UCLA. As it goes and you have heard a thousand times, you are in the best hands, whether it is at the hospital or the big picture, HIS hands are always there to hold you up and to comfort. This process is not easy but you all have the strength in each other to face any challenge, and you have each other. Rudy gets his strength from you, Trish, Wilson , Max and Livvy. We are always here and always have you close in our thoughts and prayers. Rudy is a strong little booger. We are looking forward to having play dates with him and Logan very soon. We love you!! xoxo Go Rudy Go!!!
Thanks Rolf for being so honest about your feelings and what you are going through. You always have my vote, Mr.President and I love your whole Geyling Gang. Thanks for all of your and Trishs wonderful posts.
Thanks Rolf…..that was a good reminder that you all are always on the brink of uncertainty….we all deal with that on some level, but when it’s the life and health of your kids it goes deep. We continue to pray for Rudy at our family dinners and love you all so much….
Your grace, compassion, and thoughtfulness shine through every post since Rudy has come home. Your fear and pain of the hospital days can’t be forgotten, I know that you live with the bad aspects through your writing and live with both your joy and pain. If any story was ever written showing all the aspects of loving a child with heart problems while still providing for a family, then your family has done the job. I laugh with Max and his presentation, hold my breath when Rudi’s tube is clogged, shake my head in admiration of Rolf’ fix of the humidity problem, and just sit with head bowed as I appreciate the effort and love expended. With all the bad news in the world, I enjoy having the chance to appreciate what people can achieve in the face of the worst terrors a parent can endure. Sorry, so sorry, you have to live on the front lines, but for other parents you have given of yourself the gift which provides valuable perspective.
Very well said Rolf. I too found the parent teacher conference this week where I had to tell Matthew’s teacher that Garrett needed a heart transplant and that this could happen this year REALLY hard. Even after all these years, I still choke up when I need to actually speak of it. I’m much better at writing about Garrett’s situation than speaking about it. Somehow verbalizing what is going on does not come easily for me.
The waves do come slower and even almost stop after the surgical period and there can be long periods of normalcy where hlhs is there but not dominating every part of your life. During those periods I’ve never left the community though. As hard as it is sometimes, I want to return every bit of support I got from these strangers who are now my friends.
We are further down this journey than you guys are…our hlhs kid is going to be 13 in April! The storm waves have kicked up again for us and once again the community is rallying in our support even though many of them are at the start of their journeys and can only offer their prayers…which are very helpful. 🙂
The early years are the hardest when you are in the midst of all the surgeries and there is so much uncertainty. You are right, the second surgery though it is supposed be to easier (and for Garrett it was) is hard as you know so much more and a littler personality has been growing.
By the way, I think the book is a great idea. Reading your blogs is like reliving the early years with Garrett. Your and Trish’s thoughts and feelings are so similar to mine…you guys just write 100 times better. I think a lot of families could benefit from hearing about your experiences.
thank you for sharing words of feelings that I could never write so well. I continue to check on Rudy often; as I continue to think of Katie and her family. I continue to pray That HLHS Circle didn’t exist and someday there will be a better and healthier Life for All. You are in our prayers and thoughts, Nick’s Grandma
Thank you again for sharing from your hearts. You and Trish really do express yourselves so well. Our hearts will continue to lift you in prayer as Rudi is prepared for the next days and weeks at UCLA. We pray for God’s timing for this next procedure.
Thank you for being so kind and thoughtful in the midst of your challenges. You and Trish are exceptional people and wonderful parents. It is a pleasure to know you. You are all in my prayers. Sydney xo
I may have to share a few of your quotes. I am not an eloquent writer and your thoughts are shared so perfect. Living with the fear of uncertainty and death staring you in the face is horrible. . . But living with a child an in an ICU world that is so close to that line brings constant reminders of the Lord’s grace. The prayers, service, and spirit that surrounds these babies is unimangineable. Sometimes I would forget to notice it. Then there were other times I would walk in Ethan’s room and (I know I will sound cooky) but I had to pause a moment and let his angels finish tending to him before I walked over to be with him. You could just feel it in his darkest (physical) hours.
Rudy looks great. Celebrate the joy in his life while trying to push out the aching in the gut for his condition 🙂