With the days counting down to the cath, Rudy’s been spending most of his time at home. We’re probably not as obsessive about it as we could be, but with all that goes into getting a cath date (lab and doc schedules) we’d hate to see any delays caused due to Rudy catching a bug. As it was perhaps the only weekend this year where we’ve had to endure a dose of that brutal Santa Barbara winter (read 55F with intermittent showers), he hasn’t been lonely indoors. So, I just thought we’d give a few glimpses of our regular weekend at home.
Rudy’s last day out was Thursday for school. His class, the “Bear Club”, went on a walk to the neighborhood market and the teachers spotted a little good luck gift to send him off with:
Being home bound isn’t all that bad. Especially when you’re as easy to please as Rudy. Most days, he’ll go into the kitchen and find himself a cup to stick over his hand and carry around most of the day. Some days a cup is hard to find, but this time of year it’s pretty easy to find a box of Girl Scout Cookies in the cupboard. Rudy found one yesterday and, after quickly tossing aside the cookies, he held on to the box for several hours–even through his nap.
Housebound or not, we still expect the kids to help out with chores. It’s amazing how even Rudy can pitch in and be surprisingly helpful. Check out this video of him helping us polishing the kitchen floor.
Max was scarce this weekend as he wowed audiences in the GVJH production of 42nd Street. In between playing to three packed houses, he found time to entertain and educate his little brother in fine art of zerberts. Take it away, Max!
Thanks so much for checking in and for all the kind notes and comments. It was a full and fun weekend–stay tuned for the eventful week ahead.
It’s hard to describe the feelings that come with the countdown to a hospital date. The March 21st cath was scheduled on the books sometime before Christmas. When it’s months away, it feels kind of good to have a milestone to shoot for–an event where there may be some progress, some new information and maybe a new game plan. But the closer the date looms, the more ominous it gets. At about a month out, Trish and I both notice that things start getting more complicated. There are times when I just wish it would come so we could be done with waiting–and then I remember that this involves Rudy getting strapped to a table, needles, anesthesia and a bunch of instruments getting stuck into a very delicate beating heart. No matter how balanced one tries to be, it’s unavoidable to get your hopes up that it will end with a good report–maybe because the bad reports still sting so badly even when you think you did the best you could to prepare for the worst and not get your hopes up. As a friend recently wrote on her blog, you can get “under-sensitized” on this journey and go into it thinking “No big deal. It’s not surgery. It’s just a cath”–losing sight of the fact that no normal parent in their right mind would be dismissive of this.
There’s a weight that comes with the wait. It starts heavy and just grows. Not sure there’s any way to lighten it but having a full schedule to occupy us sure helps. At our best, it feels like we’re being defiant and not letting this weight crush us from living our lives. Or maybe we’re not all that tough and it’s just fear driving us to do anything we can to distract ourselves. It’s hard to come up with ways to lighten things at 4am, but it’s surprising how even in the midst of an otherwise fun and consuming activity, the reminder of what’s on the horizon can hit you with a pang, a gasp or a shiver.
That brings us down to one week to go, when all of this stuff can cycle around in your brain at warp speed. I think we do a pretty good job of holding things together, but to be honest there’s a lot of turmoil just under the surface. Productivity in the house and work goes down as it gets increasingly hard to focus. Emotions cause you to say things you might not normally say, or misinterpret what someone else might be saying. While staring into space is not all that constructive,a few stupid spousal spats make the case that it might have been a wiser activity to maintain. The whole intensity is raised a notch when it just so happens that several of the families we’re close to in the blog world have all had hospital episodes this week. Paxton had a big surgery today. Owen had a cath this week. Josh had one last week. Moriah’s headed in for some stuff this week too. Always a comfort to know you’re not the only ones going through this stuff, but with that come the twists and turns that anyone walking with someone in these circumstances feels.
That’s not to say it’s been all that somber. Life goes on. There’s been good reason to have fun and we’ve drunk deep. The weight’s there–not sure there’s much we can do about that. So instead of thinking too much about whether we’re acting in defiance or running in fear, we’ve had fun just doing life. Funny is still funny and fun is still fun. What’s coming is coming, but there’s still such beauty in life.
Max turned 13. All that charm now unleashed with true teenager cred! Life and weekends are so full right now we really couldn’t schedule a party (and he wasn’t so sure 13 yr olds do parties), but since we had to be in LA for his birthday we made an adventure. He got to choose our lunch stop so it was our introduction to “Fab Dogs” as seen on Diners, Drive-Ins and Dives on the Food Network. More ways to have a hot dog than you ever imagined. All kinds of nutritional wrong, but as Guy Fieri would say “FULL THROTTLE!”
Our primary reason for being in LA was to celebrate Lisa and Daniel’s wedding! A joyful day with a family that’s very special to us. Livy was very honored to be the flower girl and fulfilled her obligations beautifully. Trish was asked to sing and Wilson and Max backed her up for a memorable performance.
Max’s birthday celebration continued the next day with a stop at Universal Studios.
Back in Santa Barbara, the events continued:
Down time? Not that much right now…but the daily routine can be pretty rich:
More activity to come this week as Oma and Opa are about to land and they’ll find that taking interest in their grand kids will involve making some choices between the Jr. High Musical, drumline performances, surf lessons, an elementary school track meet, a church talent show and the regular Rudy routine.
We appreciate your prayers for our family as we count down to next Wednesday.
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…