Gathering my thoughts…

The kids are in bed and I’m trying to take just a bit of time to gather my thoughts before sleep comes.  Quite a day we’ve had.

When Trish got to UCLA just before 7pm, Rudy was clearly in a different state than when she left this morning.  He was agitated, running a fever and Nurse Christine said he had a couple episodes where his heart rate was racing up over 200bpm–all giving more credence to the onset of an infection.  After some work she was able to get him settled, off to sleep and even catch a few winks herself.  They haven’t started any major lines yet, but may come in later tonight and get an arterial going.

I’m admittedly dazed in the wake of this turn of events.  I don’t think I’m all that worried about Rudy right now.  I don’t like the fact that he’s in distress and so uncomfortable, but as long as the docs continue to feel that he is stable from a cardiac perspective he does fight his way through these things.  It just takes time.  Time.  Here we go again.

I’m once again struck by how little of this journey with HLHS takes place on our terms.  Even if the intial diagnosis was a surprise, I think we somehow thought that from there we would be able to prepare and approach this thing methodically.  I guess two weeks away from the hospital made me forget the reality that Rudy’s fight started earlier than we planned and lasted far beyond what we allotted.  I guess I subconsciously assumed we were going to be able to schedule this thing a bit more from this point on, only to find ourselves thrust back into another episode yesterday afternoon.  Storms never come on our terms–we just respond to them when they come.

Tonight I’m aware of the aches.  I hate that my kids had to come home from school and be confronted with a new cycle of  tag-team parenting just as things were getting routine again.  Sweet, super kids–and maybe I’m just reading things into their behavior, but it sure felt like there was an emotional edge exposed tonight in our interactions.  They deal with it the best they can.  And now that they’re asleep the house feels really empty.  I’m tired but also at a bit of a loss with what to do with myself–the daily schedule of meds, treatments and feedings isn’t there anymore.  But beyond that, I just plain miss Rudy.  I always wanted him to come home, but the two weeks he was here changed the intensity of this.  Now, it’s not just that he isn’t here, it’s that he’s absent from where he belongs.

13 thoughts on “Gathering my thoughts…

  1. This is always the flip side to love, isn’t it? It opens us to so much pain, and the pain of absence/separation is at the top of the list for most of us. But the kind of absence you are experiencing is uniquely poignant because you have only recently discovered presence with Rudy. Even with the constant tending, having him at home, doing ‘normal’ family things like making plans for dedication Sunday, going to In ‘n Out, slumber partying with Olivia – all of you have been experiencing and enjoying this strange and wondrous new part of the journey. Having him HOME – oh, the relief, the wonder, the newness of it all – all of that, so abruptly brought to an end with the rude reminder yesterday afternoon that Rudy’s life is so very tenuous and fragile. You have been hit upside the head with the reality that no matter how much you wish for it, or plan for it – there is no possible way for you to control any of this. And when one gets hit upside the head, there is disorientation, confusion, pain.

    One possible response to the severity of Rudy’s condition could have been to withhold love, to refuse to hope, to distance yourselves, as a form of self-protection. None of you has taken that route, thank God. So I commend you all, I commend you strongly for allowing yourselves to love that precious boy enough to risk the pain that comes when reality bites. May you and Trish find enough calm inside to sleep tonight. You’re both exhausted – on every level possible – and sleep is God’s great healer for so many things. So, sleep well, dear friends. And hang on to hope. Rudy will be carried once again by the prayers of so many people – most of whom have not and will not ever meet him in person, but all of whom have been ‘infected’ by the depth of your love and commitment to this beautiful boy and his journey, no matter where it leads. Hear our prayer, O Lord. Hear and answer.

  2. I can only imagine the hurt you are feeling, having Rudy home……all I can say is….we are sure praying for a speedy recovery with this episode and a quick return home…..we have to Thank God that he is in the hands of those who know him…….prayers for strength for all of you….Bless You, Dawn’s Mom

  3. I love what you wrote: “Storms never come on our terms- we just respond to them.” I’m sure you feel that you’ve already had your share of storms, but you are not weather-beaten….. I thank God, and appreciate your maturity. You inspire us all….

    …not that “being an inspiration” is what you want…..Lord, bring our boy home soon!

    Know that we…and a bunch from Covenant are praying for you.

  4. I am so sorry that you find yourselves in this new storm, but I know you will find God as peace in this story sea just as you have in the past. Let the shadow of the Almighty fall over you and bring you rest. Much love Lynn

  5. I’m so sad and sorry. I can’t imagine the feeling. My thoughts and prayers are with you, Trish, RUdy and the kids.

  6. x and Livy. I do know that you and Pat are amazing Parents. You have a wonderful family and God has bless you with 4 beautiful children. Even though Rudy has some physical problems, he is a beautiful child of God just like the other 3. Regardless of where this journey leads, just remember you have been bless with a beautiful family. Love, GPD

  7. Feeling the absence right along with you, Rolf, as we were getting used to the fact that Rudy was at home, too. The Rudycoaster has a long train with lots of riders feeling the twists, turns, loops, drops and climbs. Praying that the infection will be identified and/or treated successfully and that the new “normal” can resume…even knowing that every week seems to bring a new definition to “normal” as the Rudycoaster winds its way along the journey!

    We love you all from Kansas!!

  8. praying for a quick turnaround.

    leaving tomorrow for ten days but know that you and Rudy are in the palm of His hand…and mine literally. xxooR

  9. We love you and are praying for you. Your e-mails keep us up to date on what to pray for and your humor and openness in sharing how you go through these “storms” bless us and give us insight of how Jesus “rides in the boat” with you.

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