Oh my, So many BIG things going on in the life of our family….sadly, I’m experiencing some computer problems and I may have lost my pictures from the past year (Noooooooo! Praying they can be retrieved). I’ll have to wait to post a longer update but for now I just wanted to post this precious moment I captured yesterday at the a Special Olympics. Rudy was NOT motivated to participate….especially with the large crowd of cheering spectators yelling on the sidelines. He did, however, perk up when he saw Coach Galvan (his Adaptive PE Teacher) and all of a sudden he was all smiles! Way to go Coach! Way to go Special Olympics!
Either Christmas came early for Rudy this year or the Easter Bunny has a HUGE basket in which to carry his goodies because Rudy hit the jackpot this week…so much so that even the big kids expressed feeling a little jealous! Thanks to the Manning family and the dear folks at Kisses from Katie, Rudy was gifted his very own IPad with accessories and adapted therapy tricycle!!!
We are deeply grateful to Kisses from Katie for choosing to bless Rudy so generously with equipment that is not only therapeutic and practical but also SO MUCH FUN!!! The day after we got Rudy’s bike, Max, Olivia and I were on our bikes riding around in circles with Rudy in our cul-de-sac and for the first time EVER, we caught a vision of our family going on a bike ride alongside Rudy in our neighborhood. It sounds simple and mundane but for a kid who couldn’t keep his feet on the peddles of a bike less than a week ago, it’s a miracle to see him riding independently with the extra support and peddle straps on his Rifton trike! And for a kid who doesn’t have the fine motor skills to control a pencil or manipulate a computer screen with a mouse, it’s a miracle to watch him effortlessly navigate touch screen technology and play alphabet games on an IPad! We are confident this equipment will help Rudy progress developmentally in addition to bring him great joy. Thank you Kisses from Katie…thank you Alan and Vickie…thank you sweet Katie Manning whose precious life we are reminded of every day! We are humbled!!
Thank you, too, for the sweet comments and prayers and expressions of encouragement I’ve received since my last blog post! It’s definitely a daily challenge to keep things in perspective but the outpouring of love and encouragement is certainly a blessing. Having a week off from school and therapy and dr. appts this week has been good for my soul…wish we could extend spring break just a little bit longer. :)
Here are a few more highlights from the past couple of weeks…
Well, I guess it’s time to get ready for our Good Friday service at church. I’m grateful for the special emphasis of Holy Week in the Christian calendar…from Palm Sunday to Maundy Thursday to Good Friday and then Easter…focusing on Christ’s willingness to suffer on my behalf certainly helps put my struggles into perspective…light and momentary in the eternal scheme of things for sure. :) May your struggles feel a little less daunting today too. Many Blessings to you dear friends.
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:
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!
Here we are near the end of February already! It turned out to be a full, emotion-packed month which is going to culminate with my 49th birthday the end of this week. Yikes!! Where did the month go?…Where did the last decade go?
Life got so full the past couple of weeks that I even missed Rudy’s cardiology appointment last week!!! In the 6 1/2 years that we’ve been seeing Dr. Harake, I never missed an appointment…until now. Thankfully his scheduler was able to squeeze us in tomorrow morning so we won’t be too late making it up. :)
So, what was so distracting? Well, we said “goodbye” to Rudy’s longtime school nurse a week and a half ago :(…Rolf and the big kids met me at the school for a little surprise send off with Rudy and his classmates. It was a sweet time honoring Sara and welcoming nurse Jomana to the team. Rudy is definitely adjusting but he is in good hands and we wish Sara GREAT success at the pediatric clinic!!
Wilson was one of nine DP seniors who was chosen as this year’s Trailblazer recipients and acknowledged at the last basketball home game of the season…so fun for him.
Max’s first Varsity Hockey season ended with a win for a third place finish…
We’ve collected a handful of fun video clips this month that were too short to upload to Vimeo by themselves so I made an iMovie of them all together to make it long enough to upload! (feeling very tech-savvy right now) Enjoy!!! (a video message from Rudy to Nurse Sara, an original rap by Wilson and Max, this year’s installment of “Will You Be My Valentine?” filmed by the big sibs on a ski lift at Big Bear on Valentine’s Day, Wilson and the DP drumline at the last Bball home game, Wilson and Max playing at FCA).
In addition, the big sibs got to go on a ski trip with their church youth group over the long President’s Day weekend, Rolf, Rudy and I hosted our sweet newlywed friends Sarah and Chris that same weekend and I had a speaking engagement & a couple of opportunities to sing this last week! Special stuff!! In the midst of all this goodness, Rolf and I were reminded of the severity of Rudy’s situation by a very interesting CDC research article. How it relates to HLHS is secondary to the original study focus but check out the survival rate chart at the end of the article…Click Here – CDC Article. Although we genuinely look at our life as 1/2 full as opposed to 1/2 empty, it is shocking to see in black and white that HLHS has the lowest survival rate of all major birth defects! Makes us EXTREMELY grateful for Rudy’s life and motivates us to pray, pray, pray!!!
February 7-14, 2015 is Congenital Heart Defect Awareness Week and I’m always happy to spread the word about CHDs…especially when it involves a classroom full of friends and a fun craft! :)
Rudy’s teachers gave me the opportunity to come to Rudy’s classroom today and share about CHD Awareness Week with his classmates. The kids were great and I had lots of fun hanging with them for a bit. Together we defined “congenital heart defect” and we talked about how important it is to learn about CHDs…i.e. to understand kids like Rudy better and to remind us to be “heart healthy”. We ate blueberries (a heart healthy food) and made a CHD heart magnet to display at home. Fun, Fun!
Wishing you heart health and lots of love this week….
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!…
So 2015 is starting out as somewhat of a mixed bag…
On one hand, GREAT JOY! A post-Christmas visit from my brother and his family spilled over into the New Year and so the start of 2015 rocked with cousin fun. :) Then, just four days after the Wilsons left, we had the privilege of hosting a student from Australia through a program at the boys’ high school. Needless to say, Rudy was in “extrovert heaven” and pretty much demanded everyone’s attention for 2 weeks straight! Ha :)
On the other hand, it has also been very heavy…lots of heartbreaking news that has come like a one, two, three punch. Just 3 days after my brother’s family returned to Kansas, they received the devastating news of a dear friend’s suicide. A friend my niece expressed concern about while they were here and a dear soul with whom my Olivia enjoyed a pen pal friendship. Yesterday was Emilie’s memorial service and my niece Emma was asked to speak. My heart has been heavy for the Wilson and Munyan families all week…it’s so hard to watch loved ones (my niece especially) hurt in such tragic circumstances. I’m grateful for the few but truly memorable times my path crossed with Emilie’s.
And changes in the life of our family are unfolding as we’ve gotten word of significant members of the Rudy’s Beat community moving on…the most recent being dear nurse Sara. The reality is that Sara is terribly over qualified to be Rudy’s school nurse and she is PERFECT for her new professional opportunity (100% excited for her) but she has been such an important part of Rudy’s school experience the past 1 1/2 years (truly God given) that it is hard to let her go. ;(
(Deep sigh) I’m uncomfortable with certain kinds of change and I’m beginning to face the reality that 2015 will be a year of big change as members of Team Rudy transition, expectations are adjusted and (the biggest known change, of course) as Wilson prepares for a strong high school finish and heads off to college. All of which are great reasons to celebrate but also have sad ramifications for me which is adding to the heaviness of this week. “Be anxious for nothing”…”Be anxious for nothing”…”Be anxious for nothing”…not an easy exhortation for me to put into practice sometimes. ‘Praying for peace of mind and heart as I ponder the present and approach the future with faith.
Rudy’s biannual check-in with the heart docs at UCLA was originally scheduled for last month but was postponed a couple of times landing on next Thursday (1/22). Our visit to the pediatric heart clinic will include an echocardiogram, labs, consult with the cardiologist on duty and a quick chat with Dr. Alejos…all pretty routine. Stay tuned.
The kids returned to school today (except Rudy…he has one more day of vacation), the Christmas decorations are all packed up and stored for next year (except for the Christmas tree…not quite ready to take EVERYTHING down yet) and I’m up and at ’em this morning ready to tackle the list of “to dos” (except I may just do today in my pajamas…not quite ready to get dressed). :)
The Wilsons flew back to Kansas on Saturday and Rudy had the longest nap on record Saturday afternoon after they left! Ha Ha As is our MO, we packed a lot into our 6 days of cousin fun and are grateful for the fun memories made.
Rudy was gifted a sweet tribute this past weekend as well…a friend from church recorded a song he wrote for Rudy and gave us a copy (I’ve attached it below).
It’s always such a blessing to see (or hear) the creativity inspired by Rudy. We’ve received a handful of gifts of love over the years that were all inspired by Rudy’s energy, determination…smile.
Remember CeCe VanNortwick’s Rudy’s Heart?
And Steve Subject’s portrait after Rudy’s Wish Trip?
And, of course, Greg Lawler’s photographs that flood this blog.
It touches me deeply to experience how others see our boy. I say “experience” because that is exactly what an expression of creativity is…AN EXPERIENCE…a moment in time captured by the artist that tells a story filled with emotion and depth of thought if you explore it long enough.
Thank you, dear friends, for the many thoughtful gifts of love and creativity that we’ve received over the years that continue to encourage and bless our family…especially as we start a new year…another year of unknowns but also another opportunity to live in faith and hope. I wonder what will inspire us in 2015? I pray we’ll have the presence of mind to stop and experience the precious moments that can easily be missed and be transformed by them. May your 2015 be an inspired year filled with beauty and growth too! :)
Here’s Greg and Kristin Kirchmaier’s song:
2014 ended on a high note and 2015 is starting with a bang as we’re enjoying a visit from the KS Wilsons this week! The only drawback to living in California is that visits with family are fewer than we’d like so we’re taking FULL advantage of our time together! Rudy is LOVING getting non stop attention from an adoring aunt, uncle and 4 crazy cousins. :) ‘Praying fun with extended family will be the trend for 2015!!!
Here it is Christmas eve…the kids are all nestled snug in their beds, the tamale dinner dishes are all cleaned up and I’m enjoying sitting by the glow of the Christmas tree for a little bit while Rolf finishes up some gift wrapping! We have so much for which to be thankful and we count ourselves blessed beyond what we could ever measure. Our lives are richer for having YOU in it and our lives are worth living because of the little baby whose birth we celebrate this night! Merry Christmas dear family and friends! We wish you GREAT JOY…always!