We were blessed by a quick visit from Dr. Dan this weekend who was in town to run the SB 1/2 Marathon! He told us proudly when we were down for Rudy’s cath that he was going to run in Rudy’s honor so we outfitted him with a “Team Rudy” shirt. We threatened to pull our sponsorship if he didn’t finish…thankfully he performed well and from the looks of the picture he texted us below, he had a good time too. Thanks Dr. Dan!
Rudy and I head down to UCLA early tomorrow for another Bronchoscopy…the purpose of this procedure is to remove the scar tissue in his airway in preparation for trach removal. Rudy’s ENT, Dr. Shapiro, has scheduled an overnight stay in the PICU for observation and we should return home on Wednesday. It doesn’t sound like much fun but it’s pretty routine and we trust Rudy will bounce back quickly. Once the scar tissue is removed, we can schedule the sleep study at Children’s. It sounds like this can take a long time to get in the books so we may not get in before the holidays – we’ll just wait and see. In the meantime, Rudy is getting alot of practice with his speaking valve these days – so much so, that the big kids asked recently if we could take the valve off because Rudy was making so much noise they couldn’t hear the movie they were watching. Ah, the luxury of having a little brother with volume control!!! We’ll have some big adjustments ahead when that trach comes out permanently! Ha
Yesterday was Rolf’s and my 18th Anniversary and, ironically, we’ve had a number of people ask us recently how we (as a couple) are doing so I’ve had our relationship on my mind quite a bit lately. It seems appropriate to share a bit of an update on Rudy’s Beat as this is part of the journey. We’ve purposed to be transparent and detailed in our account of our life with Rudy primarily to encourage people to pray…to pray informed, passionate prayers on our behalf because from the very start we were keenly aware of our inadequacies and our desperate need for God in all this. We’ve experienced an abundance of God’s grace throughout this journey and a good bit of that grace has spilled over into our relationship as well. I think I’ve mentioned it before but Rolf and I do pretty well in crisis…this is by far the biggest life challenge we’ve ever faced together but we have always been good partners in hard times. I’m deeply grateful for this and I don’t take it for granted. We’ve learned over the years that humor and not taking ourselves too seriously serve our relationship well in times of crisis and since Rudy’s diagnosis, we have given each other a pretty wide berth…trying hard to keep the emotions and responses to one another (and the things not done or said) in perspective of the big picture and to not take the negative stuff too personally. This coupled with an occassional “check-in” counseling session has helped us really love each other in this and not turn on one another in fear or pain.
This is a good place to be in while navigating crisis but not a great place for any relationship long term. Where Rolf and I are challenged is in our ability to set aside the demands of Rudy’s care and our family to really prioritize each other. We’re so great at “family” but challenged, at times, at “us” and we’re both feeling it. Giving each other “a wide berth” is an expression of grace but gone unchecked too long and that “wide berth” can become an unhealthy distance and we want to guard against that from happening. I wonder how we transition ourselves out of “relationship-survival mode” and into a “new normal” where attention to the details of “us” gets first dibs. Where does the energy and creativity and focus come from when life is at its fastest and most stressful? And so, we pray and ask for continued grace as we seek to grow in our love for each other and make year #19 even better than the 18 before it. Happy Anniversary Rolfi…I’m glad we’re doing life together!