Heart of Beckett

UPDATE (7/1/13)

Whelp, big day tomorrow. Can’t believe this day is finally here. I must preface tomorrow’s “Update” by forewarning you that it may be a pretty busy day, and we may not get to our “daily update” until fairly late…or…it may be brief. But remember, (typically) no news is good news.

Today has been a great day. Beckett hasn’t necessarily been in the best mood though (like he was yesterday). He had such a great demeanor nearly all day yesterday, but today was a different story. We actually had an awesome photographer here today that has been scheduled and canceled over-n-over since February. Sooo, she took some pictures and also documented some of the dedication.

Speaking of, the dedication was a real tear-jerker. I’m already a big sap, so even though I wrote our prayer, Leah pretty much read the entire thing. I slid in for a few sections, but then couldn’t compose myself enough to finish it. He gave the photographer maybe 10 minutes before he was adamantly done. But I think that wore him out enough that he slept the entire dedication. Once he finished he slowly woke up….sooo, we took a bunch more pictures of him with the family before he really figured out what was going on.

Sooo, here I sit…watching Leah hold and rock Beckett. This will be the last time to hold him for quite a while. It’s really starting to sink in for the both of us…….Beckett is having surgery again tomorrow. Wow. It’s natural to get that sick feeling in our stomachs, just not pleasant or welcomed. I’m looking at him right now, and he just opened his eyes, and he’s just looking at me. He has no idea what the next few weeks (or months) hold for him. But really, neither do we. We are just praying that he has continued to develop the will to fight….and clearly, God will be there fighting for him and us every step of the way.

I’ve decided I’ll post our prayer of dedication. It’s a prayer, a declaration, and reminder of where we’ve come from, where we are, and where we are going. Thank you all for your prayers. I truly don’t believe you’ll completely understand just how much we appreciate it.

—————-

Sovereign God,

We have verbally, emotionally, spiritually and physically given this gift, we’ve named Beckett Jude Rupp, back into your care. The irony is, Beckett has always been, and will always be, in your care. So, I guess this is more of an opportunity to publicly acknowledge your sovereign commitment to our son and our family.

To be brief, many would say that these past 6 months have been a disaster. I know that I’ve said it. However, we are learning that one’s personal perspective has great influence on how we define these seemingly subjective terms. If “disaster” is referring to events such as being woke in the middle of the night with news that our son needs immediate surgery on his heart or he will die, or sitting in a dimly lit hallway for hours while questioning if our son is even alive, or hearing that my son has dropped from a 70% survival rate to 40% overnight, or the news that the physicians need to shock my 3 week old son’s chest to calm his heart back down, or watch him desat to single digits numerous times within a few days, or even an emergency trip to another hospital with news that my son may never fully recovery and be ready for the next/required surgery on his heart………if these events are associated with disaster, then yes…these past few months have been a disaster. But here’s the rub…to every coin, there is another side. How about the perspective that my wife had a “smooth” pregnancy, or that we got an entire day with our son without all the tubes and chords, or that his condition was even caught, or the amazing nurses, doctors and surgeons who truly care deeply for our son, or that we have amazing friends and family (& strangers) bending over backwards to do all that they can to help “soften the blow” to that which we’ve been referring to as a “disaster”, or how about all the thousands of people impacted and challenged by our son’s life and journey, or one of the most important perspectives….my son is still alive!! We’ve both been privileged with celebrating mother’s and father’s day! We’ve been in enough hospitals to fully understand how blessed we are to say that. Our current story of “life” is not every parent’s story, unfortunately. And though I must declare that I trust God’s sovereign plan, no matter how much I may disagree with it at times, I am so blessed to be able to look over and see, kiss, and love on my son for another day.

So we declare and dedicate out of thankfulness and an edified soul Beckett Jude Rupp to The Lord. You, Lord, are why we are even gathered in this room (whether we fully understand that or not). You are sovereign, you are loving, you are gracious, and you’ve been so faithful to our family.

The name, Beckett, means “The one dwelling by the stream”. We choose to to assimilate this stream with the still waters referred to in Psalm 23.
The Lord is my shepherd;
I shall not want.
He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
Forever.

Beckett’s middle name, Jude, is a powerful name we dedicate to that of Jude 1:1, which states that Jude was a servant of Jesus Christ.

You are all here because this little boy has grabbed your heart. He’s certainly a fighter. But even stronger than he, is our Father. The one word Leah and I can both agree on that we have felt spoken to us is, “wait”. Psalm 46:10 says, “Be still, and know that I am God. I will be exalted among the nations. I will be exalted in the earth.” We have also clung to the words in Exodus 14:14
“The Lord will fight for you; you need only to be still.”

2 Corinthians 12:9 says,
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Psalm 73:26
God is the strength of my heart and my portion forever.

Lord, our son is in your hands. We do ask that you continue to heal him. But, all the more applicable to this moment, we dedicate Beckett Jude Rupp to be trained up in the ways of your word. May others always hear, see, and experience you through the life of our son. Thank you for him, may we never take a day for granted.

To God be ALL the Glory,
Amen.

#GoBeckett
#ODAAT

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

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

UPDATE (6/29/13)

Beckett had another great day. Yeah, he did minor things like reflux and such….but I cannot tell you just how thankful I am with the uneventful nature of these past few weeks!

We had some great visitors today. One of Beckett’s old Neo Physicians from St. V’s visited again. I think she’s visited us at least 2 or 3 times already…it’s so great! We have such a caring following from St. V’s NICU and the Peyton Manning PICU. Also, the wife/mom of the amazing family who lets us stay in their home visited again today. They are truly amazing! I know they read this blog, so I want to point out to them our gratitude and publicly acknowledge to all you reading these posts just how great that family has been to us. They have the house we are staying in cleaned ever few weeks, they grocery shop for us ever-so-often, they place fresh flowers in the house every few weeks just to freshen the place up, and (I hope they don’t mind me posting this, but) they’ve also supported us financially through this journey. Amazing. Leah and I only hope and pray to someday be given the opportunity to reflect this faithful and giving spirit that they have so diligently displayed to us.

Soooo many of you have blown us away with your generosity…and we cannot thank you enough!!! May it be returned to you 100 fold.

That’s about it. Be sure to check out the pics I posted…Beckett was being so cute! Leah was at work today, but is taking tomorrow off and will be back with us boys then. It just feels “right” when she is here with us. “Thanks for all you’ve done for us and our family, babe. You are an amazing woman!”

#GoBeckett
#ODAAT

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

UPDATE (6/28/13)

Happy 6 Month Birthday Baby Beckett!! We’ve said it before, and we’ll say it again, “This has been the fastest and slowest time (6 months now) of our lives!” We are so blessed to have been afforded these past 6 amazing months. Yes, it’s been (by far) the most challenging, exhausting and frustrating time…but truly the most exhilarating, rewarding, and edifying time in both Leah’s and my life. And on top of all that, we are truly blessed with the cutest, smartest, and bravest son a mother and father could ask for. Beckett has taught us so much…..and it’s only been 6 months; imagine what a lifetime will bring!

This morning began with a phone call from a (317) number….that’s always scary. Usually that is the hospital calling with “news”, and it’s rarely news that is desired. However, it was actually our surgeon, Dr. Brown, calling us on his way to the airport. Apparently he is going to be “out-of-town” this weekend and won’t be returning until late Monday evening. He said that he unfortunately won’t be able to meet us until right before the surgery on Tuesday morning, so he decided to call us to at least introduce himself (over the phone), and explain to us his current gameplan. We are actually a little confused with the information he gave, but this what how I interpreted what he said. He mentioned that they (ALL the Cardiologists and ALL 3 Surgeons) discussed Beckett once again this morning and have decided to go ahead and proceed with the “Hemi-Fontan” surgery (that was a bit of a shocker). Then he went on to explain (what he didn’t know that we already knew), that they really are going to be doing what’s called a “Glenn” operation rather than the “Hemi-Fontan”. The shocker (as prefaced earlier) was the statement that (again, it sounded like he said) they would like to just do the Glenn operation first, take him off the heart/lung machine (which they hook him up to during the operation), then check his pressures, and see how he handles it. If he cannot “do it” or “handle it”, they will THEN commence “Plan B” and replace the shunt (this time with a bigger one) and even fix a few of the things they want to fix. Clearly, we are hoping and praying that he will be able to do it. We truly are hopeful. As one friend put it, “Preparing for the worst, Praying for the best.”

Side-Note, after that phone call with Dr. Brown, I couldn’t help but see if this was his actual cell-number. So I saved it as a contact, clicked the number to “send him a message”, and observed that the word “Message” at the top switch from “Message” to “iMessage”. 😉 Dr. Brown has an iPhone! Ha. Now, if we ever have a question…….I have his number! 🙂 Just kidding, just kidding…..but not really. (hope he’s not reading our blog yet)

On another note: Beckett is awesome! If you didn’t already know that, you must not have been reading our blog for very long. 😉 Beckett is now making new noises with his mouth, which is so fun. You can tell he really likes to do it, as if he’s just trying to show off. He can also remove the pacifier from his mouth and successfully place it back in. He’s also done a few impressive “saves” as the paci was falling out. He’s been close to doing this for weeks now, but I haven’t felt like I could state this as a legitimate skill until now. This boy is talented!

Oh, and again….for those of you who’ve been following for a while, you may remember that I was able to (somehow) finish this past semester of grad school. The one exception is that I needed to finish an internship this summer, and until that was done and accomplished, my grade for the class that held this requirement was posted as an “Incomplete”. Well, I can officially state that my grade is posted, it no longer reads “INC”, it has now been changed to an “A”…..and I have NOW officially finished this past semester! This has been a huge accomplishment for me. And I think, I think, I actually somehow did better this past semester than last Fall. #irony Sooo, a big thank you for all of you praying for that. That certainly made everything a bit more challenging, but I’m certain I am a better man because of it.

Lastly. Leah and I have always discussed how all of “this” has had to of happened for a reason. Though there are many positive (and truly amazing) things that have come from this journey, one specific area we’ve hoped to help is to encourage those who are struggling with this exact heart defect (with their child) as well. Well, today that has happened once again. We’ve had other families already reach out who are about to embark upon a similar journey (in which we are flattered and humbled). And we’ve found this opportunity as a great responsibility. We have decided to be honest, but hopeful when speaking about all that has happened in our lives. Well, as I was trying to state earlier, we met another couple today who’s daughter has HLHS and are getting ready to send their daughter into surgery for the first operation of this process. We wanted to be encouraging, but have found it difficult to answer the question, “How did your son do with the first surgery?” After being asked that, I still can’t help but take a deep and dramatic swallow as I think the words, “It was a disaster!”. Surely these are not the words these parents are wanting to hear. But the truth is, Beckett is 6 months old today, and the answer is, “Well, we’ve certainly hit some bumps along the way, but our son is still with us, and we are getting ready to do his next surgery (potentially) in less than a week”. We tell them that this may be difficult, it may go smoothly….it’s hard to say. BUT, the reality is that you don’t know how hard, or how easy it might be….just put one foot in front of the other, take it a step at a time, a moment at a time, soak up the time you get, and love as hard as you can comprehend how. Funny enough, this “advice” is applicable cross-platform. Whatever your circumstances, whatever your situation, live in that moment, hurt in that moment, be refined in it, love in it, it’s ok to cry, it’s certainly ok to smile and laugh…be present. Love, and allow yourself to be loved. I feel like a long-haired hippie at Woodstock (I mean no offense) and am just throwing up both hands with my fingers in the shape of a V mumbling “peace, peace”. But it’s true. Love hard, and live hard. Embrace God’s love and grace. And if you don’t believe in a “god”, look harder, my God is there….and he loves you and wants nothing more than to reveal himself to you. Open your eyes, breathe Him in. Give it a shot, what do you have to lose? If you find grace, you’ve finally found life.

#GoBeckett
#ODAAT

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