Last month we had the pleasure of a visit from Nick and Jeni Busta…you may remember that we first met this sweet couple at the Heart Walk back in September and had hoped for a chance to follow up with them. Jeni is a HLHS survivor and spends a great deal of her time encouraging and supporting CHD families. It was fascinating and extremely helpful for me to talk with someone who is able to articulate the challenges that accompany HLHS…I’ve wondered many times if there are unseen side effects for Rudy related to his HLHS that he is unable to tell us about. Jeni confirmed that there is, indeed, the potential for chronic back pain and chest pain as these are things she battles each day. I appreciated her candor and honesty in sharing about her experiences growing up…the things she wishes now she had (i.e. certain types of therapy) and the choices she’s grateful were made along the way. Although I know each journey with HLHS is a very different path, it was encouraging to talk with an adult survivor who knows firsthand what Rudy is going through. Talking with Jeni also reminded me that as much as we try to treat Rudy like a “normal” kid and encourage him to do all he is motivated to try, he has limitations that will frustrate him and he’ll need to be encouraged through them whether those limitations are temporary or permanent.
Olivia was particularly affected by Jeni’s stories of being bullied in school when she was young and I know she’s been thinking about them since. Just a few days ago, Livy and I were in the kitchen when Dean Martin’s version of “Rudolph the Red-nosed Reindeer” came on the radio. When Deano sang “Rudy the red-nosed reindeer”, we laughed and said “Hey, it’s Rudy’s song”. A couple of minutes later, Olivia asked “I wonder if what happens in that song will happen to Rudy?…I wonder if Rudy will be made fun of and bullied for his disability but then be asked to do something really special and important and then he’ll be a hero?” Sweet girl…I love the way she thinks and her sensitivity toward Rudy. There is a lot to ponder in that question but I think we’re all a lot like Rudolph…we all have things that could be considered a flaw or disability that God desires to use for a special purpose. When we live out that purpose, we become a hero to those we serve and, more importantly, God’s plans are accomplished through us! Jeni is certainly a hero to many as are Rudy and the big sibs to me. I pray that we’ll recognize God’s purpose in our weaknesses, that many heroic acts will fill this holiday season and that God will be glorified in it all! ‘So grateful today for the many lessons we’re learning along the way.
Of course, God gifts us with amazing strengths as well and I’m so glad our friend CeCe (and Rudy’s God-sister ;- ))blessed us with one of hers…look what she painted for Rudy for his birthday! I love her interpretation of Rudy’s Heart filled with such color and life! Thank you CeCe…keep up the great work young friend! If Rudy’s Beat were a book, this would be my choice for the cover!! Ha 🙂