I apologize for my delay in posting after our appt. with the heart clinic a couple of weeks ago…I haven’t been very motivated to post in part because our family schedule has been full but also because our time at the heart clinic left me feeling confused and irritated. It has taken me a bit to process it but I think I’ve come to a helpful shift in my perspective.
Rudy is fine…no change good or bad but what frustrated me was the consultation we had with the cardiologist after Rudy’s exam. With no new things to report regarding Rudy’s condition, the discussion quickly turned to hypotheticals (I hate talking about hypothetical scenarios) and I was confused by the lengthy dialog we were having about things we ruled out 4 years ago. There are a handful of cardiologists that rotate through the clinic so we see a different one every visit. As a result, it’s only natural that we would have repeat discussions with different doctors but it felt like we were reverting back to square one this visit and it felt like a waste of time. The cardiologist we saw is a great doctor and my frustration wasn’t with the cardiologist specifically but rather with clinic itself. Why do we go? What’s it’s purpose, really?
In reflecting on the past couple of years, I realize now that my expectations for Rudy’s heart clinic appts have been pretty unrealistic. You see, Rudy’s condition is monitored closely by Dr. Harake every 6-8 wks here in Santa Barbara, Dr. Harake keeps the team at UCLA updated and then we check in with them face-to-face at the heart clinic every 6 months. I approach each clinic appt with great expectation hoping to get helpful information that will serve us in developing a plan of action for Rudy. Of course, with Rudy being in limbo medically, this doesn’t happen and so I usually leave clinic disappointed and emotional.
It’s a totally understandable dynamic but I realized this last visit that my perspective on clinic needs to be revised…I don’t think the purpose of clinic is to GET anything but rather to GIVE the team information they need to determine Rudy’s current status and maintain a breadth of baseline information that will be helpful should Rudy ever become a heart transplant recipient. There’s only so much that can be determined by an echocardiogram. The details that Rolf and I can give about Rudy’s interaction with every day life is important in filling out the bigger picture! It may seem like a subtle mental shift but it has a huge emotional impact. Not only does it eliminate disappointment over unmet expectations but, if my role in providing information is crucial, then it also refreshes my motivation for clinic. It’s a helpful distinction for me and I’ll have an opportunity to try out this new perspective in a couple of months when we return to clinic in April.
In the meantime, Rudy is plugging away at physical and occupational therapy at the medical therapy unit as well as speech therapy, occupational therapy and adaptive P.E. at school and continues to take great pride in his developmental progress. Regardless of all the details that go into assessing Rudy and all the extra services that define his daily routine, Rudy is a walking miracle and I find great joy in the reminder today that he is fearfully and WONDERFULLY made (Ps. 139:14). This truth needs to be my overriding focus ALWAYS! 🙂
Rudy’s a good helper as he demonstrated this week while helping to bring the groceries in from a Costco run. Check him out in action!…