I’m not even sure what direction to take this post as life feels layered and scattered at the moment but the obscure list of “to dos” on this week’s list will culminate into something pretty special next week so we’re all just trying to ride the ride that is our life right now. Sadly, Christmas is now all packed up and put away. The big kids headed back to school today (Monday) and the big boys are preparing for their semester finals next week! Rudy starts back to school tomorrow with a new schedule that has him departing on the bus at 7:40am! I spent the day today running errands, communicating with the kids’ schools and Rudy’s doctors in preparation for our trip to Florida next week (!) and getting the last of the big sibs in for the flu shot. Although my day was very productive, I’m ending the day feeling like the list of “things to do” is only getting longer as our departure for “Give Kids The World” gets closer. Make-A-Wish does such an amazing job taking care of all the logistics on a trip like this but the reality is that there are always details that have to wait until the last minute and we’re down to that exciting final countdown. As Olivia and Max headed out the door to go to school this morning, Olivia turned to me and said “I have a saying to keep me motivated for school this week Mom. It’s ‘One more day at school means one more day closer to Florida.'”. I like it…I think I’ll adopt a similar saying…:)
We’ve done a pretty good job of holding Rudy’s Wish Trip loosely and not getting too excited about it in case something happened to postpone or cancel it. It’s so close now, though, it’s hard not to be totally giddy so I’m praying hard for health, safety and good weather for Rudy’s comfort and our family’s maximum enjoyment. What an absolute gift this trip is and we are so grateful.
Rudy saw Dr. Harake a week and a half ago…his routine echo showed the valve leakage is unchanged (mild to moderate) and his half heart is getting larger (big sigh – not the direction we want it to go but what is to be expected). Dr. Harake is not one to talk about big picture “what ifs” or hypotheticals so discussions about longterm options are pretty rare but it has become increasingly important for me to know whether or not he feels Rudy would ever be considered for a heart transplant. It’s not that there would be comfort for us in knowing that it would be an option as the decision to pursue a heart transplant would be a difficult road to walk but it is something that occupies my mind quite a bit and if it’s clear Rudy would never be a heart transplant candidate then I could let that go. Currently our understanding is that Rudy would not be considered for a transplant because of his pulmonary hypertension but what if that were to change? If his lungs healed, are there other concerns that would keep him off the list? The answer is unclear but I did appreciate Dr. Harake’s willingness to engage in the conversation with me and affirm the value of the question. He said he’d discuss it with the team at UCLA the next time Rudy’s case comes up in their group meeting. We’ll touch base again in February.
Rudy had a short seizure on Friday…it was contained to his face and only lasted a couple of minutes so I didn’t feel the need to take him to the ER. He was pretty wiped out after it happened and fell fast asleep so I let him sleep but kept a close eye on him the rest of the day. I’m praying it was just a little blip and not an indication to increase his anti-seizure med yet again.
Speaking of Friday, one of the last big events of 2012 happened Friday afternoon when Wilson passed his written permit test at the DMV! Yea…he is one step closer to getting behind the wheel – consider yourself warned. Rudy is a big fan of the DMV…never short of a captive audience to woo and charm.
2013 started out right with a trip down to L.A. for Rolf, Max and Olivia to see Stanford play in the Rose Bowl (Wilson opted to hang with me and Rudy). Not only was it a great game but we also got to visit with Bobby and Marilyn Clinton. Bobby, a former professor at Fuller Seminary and author of several books on leadership development, has had a significant impact on Rolf’s life as a mentor and friend and we were blessed to have a chance to reconnect and give him and Marilyn a big hug! 🙂
After Stanford’s win Rolf predicted 2013 is going to be a great year! If only it were that easy but, okay, I’ll claim it!! Happy New Year dear friends…may 2013 be rich in joy, grace, healing, peace and fun opportunities for growth (emphasis on fun!). 🙂