Heart of Beckett

UPDATE (7/20/13)

Pretty uneventful day, but also had a profound revelation/reminder:

Not much happened today. Leah left for work this morning, I held Beckett for a while, he “behaved” quite well from a medical standpoint, and the realization that we might actually be going home in a few days literally gives me the chills (in a wonderful way)!

We did have a visitor today, another friend from my cohort at Taylor University. I tell ya, Leah and I have the best support system ever!

Additionally, a group of us from college still get together once a year…..and, well, that was today. I told them that we fully intend to hopefully make it next year. Castle forever!
(sorry, I just had to give my “shout-out”)

I was reminiscing earlier this morning while just sitting and holding my sleeping son how remarkably blessed I am. Now, before you possibly check-out on me, I ask of you to hear me out. I was just looking at my peaceful son’s face and was reminded of a young boy (among many families we have been introduced to over the past 7 months) named Beckham. Beckham’s birthday was also in December 2012, he also has HLHS, and had his first surgery (the Norwood) on January 2nd, same day as Beckett’s. We were introduced to Beckham and his family over Facebook, so I have yet to actually meet them. I decided to hunt down their blog and see how he was doing. After perusing their website, I quickly discovered that they went home after that first surgery in about 7 weeks. However, in April they had to admit Beckham back to the ICU in which he went into cardiac arrest and had to have CPR for nearly an hour while being put on Ecmo. Beckett went into cardiac arrest 9 hours after his first surgery, had CPR for about 45 minutes, and was on Ecmo for 9 days. Nine days after Beckham was put on Ecmo, he too came off (it’s almost eerie how similar and yet different their story is to ours). Unfortunately, Beckham had “substantial” damage to his brain. They are actually back home again (as of June), but the climax of this story is that Beckham is currently categorized as not a candidate for the second surgery (the Glenn…the one Beckett just had). This means, unless he begins to respond “more” neurologically, he only has another 4-6 months to live because they will not proceed with the next surgery. I’m not sharing this story to be depressing, but to show how fragile these HLHS kids really are…at any state…but to also ask for you to lift this family up in your thoughts and prayers. Furthermore, this enlightenment surely provides perspective for our personal journey, because as difficult as it has been, I was overwhelmed earlier today with gratitude. My son is a miracle…but honestly, so his Beckham. Beckham is still fighting his own battle, as Beckett has his, and God has done mighty things through both these boys lives.
http://beatsforbeckham.com

I’d like to conclude with a real “concern” and prayer request. A few of you have inquired as to what we’d specifically want prayer for, so this is what I’m asking. Balance. I don’t necessarily believe that I will eventually obtain perfection in this, but I am asking that I will earnestly seek a healthy balance for when to protect and when to challenge my precious lil Beckett. I want to quickly learn where lines need to be drawn, and when lines need to be smashed. Please keep that in mind for me personally. I want to be a great Dad, and I want to be a great husband. That sounds generic, but its birthed out of legitimate fear of “failure”. Beckett is easy to love, but that doesn’t automatically graduate me into being a great Dad. And as I’ve already alluded to, I genuinely want to pursue my wife and her needs well while properly balancing life. These requests could be applied to any Dad/Husband, but I hope I am adequately explaining this from the subtext of my current situation.

Sorry if this update has undertones of venting or journaling (it’s fairly scattered), because some of this has been me just sharing my thoughts, concerns, and where I’m currently at in this journey. But….thank you for being patient and forgiving with/of me. We are still hopeful for only a few more days of hospital life. #GoBeckett!!

#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.