Archive for March, 2015

Well Hello Again!

March 19, 2015

It has been awhile…I’m not sure I’ve gone this long without publishing a post.  I’ve been trying to figure out why.  Yes, we’re busy but we’re always busy.  Yes, there isn’t much to report on Rudy’s status but we’ve been in limbo for 5 years now and that hasn’t stopped us from posting.  We started this blog to keep our family and friends up-to-the-minute with medical details when Rudy was first diagnosed, when we brought Rudy home from the hospital we kept it going to keep our readers engaged until Rudy’s next surgery which we thought was just weeks away and then the blog morphed into this amazing therapeutic practice that seemed to help me process, clear my head and keep a balanced perspective on things in general. It ceased to be for others at some point along the way and really came to be a helpful record of the journey for our family…and the posts came easy…I never forced it just to get something posted.  So, I guess I’ve been waiting for there to be something to say.

To be honest, this has been a tough winter for me emotionally.  I think I’m battling fatigue and maybe a little depression which has left me unmotivated to process and post (who wants to read about my pity parties).  Even though Rudy is doing GREAT and  he is happy, the weight of his situation has been hard to carry recently for some reason and I’ve withdrawn emotionally.  I’m not quite sure what’s going on but I could use prayer for my fear to be wiped away and my sadness to be lifted.  I keep telling myself that there will be time for all that if things go south so, for now, I want to be 100% present in the moment and not allow my fear or anxiety to steal anything away from what we have now.  I need renewed vision, I think.  🙂

We were able to connect with Dr. Harake after missing Rudy’s scheduled appointment last month and all looks the same.  After Rudy’s echo, etc we had our typical “big picture” discussion that is always this odd combination of being both sobering and reassuring.  It is usually a pretty clinical discussion about our lack of options at this point and why it is important to be patient and wait even though our human nature wants to be “doing something” to fix it.  So true.  But this time Dr. Harake said the sweetest thing…after an appointment where Rudy babbled non-stop, told Dr. Harake his knock-knock jokes, showed off his mad walking skills and flashed his BIG, BRILLIANT smile every few seconds, Dr. Harake said in closing as he packed up Rudy’s file…”There isn’t any surgery we can do that would make him any happier.”!  I don’t know, it just struck me as a very thoughtful observation and a truth to hang onto for sure.  Rudy’s quality of life (as well as the big sibs’) has always been our focus in the choices we’ve made throughout this whole journey so far and his happy, funny, full of life approach to each day brings us GREAT joy and comfort but…there is a deep, throbbing pain I carry in not being able to “do” something for Rudy that’ll take all this away from him & us which is why things like Dr. Harake’s comment or the process of writing posts help me keep it all in perspective and not get stuck in some pretty dark places.

Since our cardiology appt, Rudy had another seizure episode (first one that we know of since late June 2014) and then fought hard against a tenacious bug that kept him home from school for a few days…it was weird because his body was able to ward off the usual symptoms of a high fever and diarrhea but he was definitely “off” in his ability to focus & maneuver his body and he lacked his usual stamina.  😦  He seems back on track now and we’re gearing up for his quarterly round of appts with the gastroenterologist, endocrinologist and another heart clinic visit in April at UCLA.

Our family has made the switch from winter to spring activities…Olivia decided to play club soccer this spring and has enjoyed getting to know her new team and coaches the past several weeks at practice. Her tournament schedule began a couple of weekends ago and she’s having fun.  Max has been juggling two sports this winter as his hockey season began to wind down and the high school lacrosse season started to gear up with practices.  Now that hockey is over, he can focus on the DPHS Varsity Lacrosse team and their full competition schedule that started a couple of weeks ago.  Woo Hoo!  Rolf and I are now proud members of the DPHS Athletic Boosters (to add to our DPHS Band Booster membership! Ha Ha) and I have some studying to do to figure out what in the world is going on during a lacrosse game.  (i.e. Why is a hard whack with the stick okay but an elbow nudge isn’t?)  During Max’s last game, I got caught up in all the excitement and found myself yelling “Whack ’em boys!… Go, go, go…Whack ’em!”…not quite sure how I feel about that.  Ha 🙂  Wilson?  Well, he continues to savor every school activity whether he is participating or spectating.  The drum line competition season is well under way and he & his drum line buddies play at as many school sporting events as they can to cheer for their friends and entertain the crowds.  It is so much fun watching him have so much fun!  🙂

Spring break is less than two weeks away and then we will be in the lightening speed race to the finish of the school year (those last 2 months go SO FAST)!  As always, the goal is to pace ourselves and finish well…taking time to appreciate (i.e. the kids’  experiences, the teachers and staff investing in our kids and our growth as a family), to enjoy each other and  to capture memory making moments (especially as Wilson graduates)!  I guess it’s time for me to get out of my funk and get movin’!  🙂

Here’s a little recap of the past month in pictures:

Got to celebrate my bday on February 27th with a walk on our neighborhood pier!

Got to celebrate my bday on February 27th with a walk on our neighborhood pier!

Got to celebrate it again with dear, longtime friends we hosted for Susie's retirement party!!  Woo Hoo

Got to celebrate it again with dear, longtime friends we hosted for Susie’s retirement party!! Woo Hoo 3-1-15

Olivia and Rolf made my favorite…carrot cake from scratch!! Yum!

Olivia and Rolf made my favorite…carrot cake from scratch!! Yum!

Got to celebrate Maxo on his 16th Bday at his favorite chinese restaurant! 3-10-15

Got to celebrate Maxo on his 16th Bday at his favorite chinese restaurant! 3-10-15

Now that the college acceptance letters have been received…the pressure is off and Wilson is enjoying a little more "down time" with Rudy this semester!  :)

Now that the college acceptance letters have been received…the pressure is off and Wilson is enjoying a little more “down time” with Rudy this semester! 🙂

Speaking of a little "down time"…Rudy convinced good friend Ric to join him on the trampoline during a SBRM dinner we hosted.  Rudy sure loves Ric and considering Ric climbed onto our trampoline (not an easy task), I think the feeling is mutual!

Speaking of a little “down time”…Rudy convinced good friend Ric to join him on the trampoline during a SBRM dinner we hosted last week. Rudy sure loves Ric and considering Ric climbed into our trampoline (not an easy task), I think the feeling is mutual!

Our new favorite hang out in town is Kyle's Kitchen…you should come visit us and we'll take you there.  Kyle (pictured here with Rudy) is a buddy from school.  His parents (successful restauranteurs here in town) opened this burger joint in Kyle's honor…every month they highlight a different local special needs program or organization and donate a portion of their proceeds to that organization!  Love this sweet family…Love Kyle…LOVE the food!!!

Our new favorite hang out in town is Kyle’s Kitchen…you should come visit us and we’ll take you there. Kyle (pictured here with Rudy) is a buddy from school. His parents (successful restauranteurs here in town) opened this burger/soup/salad joint in Kyle’s honor…every month they highlight a different local special needs program or organization and donate a portion of their proceeds to that organization! Love this sweet family…Love Kyle…LOVE the food!!!

We were blessed once again to participate in a Santa Barbara Rescue Mission graduation this past weekend.  Our family was honored to celebrate alongside 15 men and women who have been in SBRM’s year long alcohol and drug addiction recovery program.  Talk about putting life and God’s power to redeem any difficult, tragic situation into perspective!  A dear Rudy’s Beat reader and regular commenter participated in this graduation as our hostess and wrote an amazing reflection on her experience…Click Here to read Diana’s account.  Read it from start to finish. You’ll be blessed!

God bless you friends…God sure has blessed me in countless ways through you!