Wow! March just barreled onto the scene with great force as our week has been non-stop full! Since I posted last week our family (or some combination thereof) attended the La Patera fundraising jog-a-thon, the Girl Scout Troop 50649 cookie booth outside KMart, the Dos Pueblos High Drumline’s first exhibition performance in Thousand Oaks, enjoyed a visit from our good friend from Wichita (and Max’s godmother) Susie, was inspired by and so happy for the 11 men and women who graduated from the Santa Barbara Rescue Mission’s residential recovery program on Saturday, went to Rudy’s cardiology and endocrinology appts, supervised 50 very energetic junior highers during final rehearsals for the school spring musical, finished a major kitchen remodel and prepped for a visit to L.A. this weekend to attend a friend’s wedding and celebrate Max’s 13th bday! And this was all in addition to the normal routine of school, work, therapy, etc, etc, etc.
It’s really no different than any other normal family of 6 trying to coordinate schedules and balance life together but there has definitely been a shift for our family in the last year from…making a concerted effort to create a sense of normalcy in our home to…”the normal stuff is happening whether you like it or not and you better jump in and go with it or get lost in the snowball!”. 🙂 Ha Ha It’s all good, though. It’s good for me to be busy, wake up each day with a healthy “to do” list and embrace the normal stuff as long as I don’t forget the unique stresses that lie just beneath the surface for our family. This was evident to us this week in a couple of ways.
First, in the midst of a particularly busy day, Olivia came to me and asked “Why was Rudy born with half a heart?”. Strapped for time, I responded with a quick “We don’t know, Olivia, there is no known cause for HLHS. It’s just the way his heart formed!”. With a pat on the head, I sent her off and proceeded with my “to do” list. Later that evening, I realized there might have been more to her inquiry and asked her what she was thinking about that made her ask that question. Immediately her eyes welled up with BIG tears and she said that she had been reading her Ramona book and she got to a part when Ramona described how much fun it was to teach her baby sister Roberta a whole list of specific things. Reading this made Olivia sad because she couldn’t teach Rudy how to do any of those things. Oh, sweet girl. I really felt her grief at that moment and understood completely! This led to a bigger discussion of all the wonderful things she is teaching Rudy and how lucky he is to have a big sister like her and that seemed to help but it was a reminder that the emotions are there…just under the surface ready to pop out when you least expect it…like when reading a book.
It happened to me and Rolf too…Rudy had his cardiology appt with Dr. Harake on Friday and we had a discussion this time about Rudy’s enlarged heart. This is typical with HLHS patients because the half-a-heart they do have is working so hard. I wasn’t surprised by the mention of it or even that concerned as I understand this is part of the game. I was even able to keep it all in proper perspective when Dr. Harake said it might be a bit larger but still within the expected range for Rudy’s condition and they’ll check it all out during the heart cath on the 21st. Okay, good to know…not to worry…it’ll be alright. Then we heard about another heart friend up north (a bit farther along in his HLHS journey) whose echo after a routine cath showed rapid heart failure! A scenario that hit a little too close to home and reminded us again that this is such an unpredictable journey where one can get broadsided without much warning and, BAM, Rolf and I spiraled so to speak. Of course, it looks different in each of us…Rolf becomes an insomniac and I get real weepy – able to tear up at the drop of a hat – and we both are unable to focus. Argh!!! Thankfully the emotional tide is turning and our little heart buddy is at home and stable but the whole episode was a stark reminder that the stresses are ongoing and do effect how we do life in our household. Heart caths may feel as routine as dental appointments for Rudy but they hold a great deal of emotion and concern for us which surface when you least expect it.
Of course, this makes doing the “life on the go” stuff a little difficult at times but part of balancing life is learning how to balance the “normal” with the “not so normal” and remembering to breathe once in a while. 🙂
There have been some neat encouragements this week as well…we saw a handful of people who hadn’t seen Rudy in a few months and all commented on how much Rudy has grown both physically and developmentally. Nurse Marie came back this week to take Rudy to school filling in for Nurse Meg who is sick and Marie was amazed at how verbal Rudy is now. Rudy’s former OT Kris came over to pick up some G.S. cookies and she too marveled at how verbal Rudy is and how well he is moving. Dr. Harake was happy to see Rudy standing with a little support from me at our appointment and Dr. Lifshitz said Rudy is looking better than he has seen him look before. It’s great to hear such encouragement and makes the achievements feel even bigger! Check out what Rudy started doing this week…
Okay, so this may not be an “achievement”…but it’s sure something I can’t do!
A big thank you, too, for the many encouraging words I received after my “mid-life crisis” reflections. I’ll respond to everyone eventually but thank you in advance for sharing your wisdom and love with me…I am blessed.
Here are a few other encouragements from this past week…