Heart of Beckett

UPDATE (1/2/14)

Today is a significant day for our family. As Leah and I reminisce on a year ago from today, we cannot help but acknowledge the hardest few hours of our lives. Beckett’s first surgery was last January on the 2nd, and though it initially seemed to go well, roughly 8 hours after the operation was complete, everything took a turn for the worse; thus, the most challenging year of our lives.

On January 2, 2013 Leah and I were enjoying a dinner in Beckett’s room, after a long day of anxiety, when we were suddenly asked to step out of the room. We made our way down to the waiting room, but unfortunately both of our families had already gone home for the night (over an hour away) because of the stable condition Beckett was supposedly in. What made things worse was that we waited a few hours before we were even addressed as to what was going on with our son. What really freaked us out was finally being addressed by someone, but that someone being the hospital’s Chaplin (that’s never a good sign). The Chaplin didn’t know much about Beckett’s condition, so we were still left with many questions. Eventually we were greeted with the news that Beckett suddenly began to bleed out and went into cardiac arrest. Our surgeon had to rush back in and the medical team was doing compressions on Beckett for nearly 45 minutes while he was being hooked up to “life-support” (Ecmo). Our surgeon was reluctant to deliver the news, but felt obliged to let us know that in his professional opinion, Beckett will definitely suffer from a degree of brain damage due to this incident.

With ALL that being said, in many regards, this night set the trajectory for the following 8 months of our 2013 year. To be even more transparent, and in my shortsightedness (but also slightly joking), I mentioned to Leah while watching the ball drop on 2013 to begin this new year, “Sayonara 2013!” Though this evoked a small laugh from her, she was quick to respond with the balanced perspective of just how much we truly have to be thankful for. Yes, we are thankful for our “favorable” outcome, but more importantly, we are truly grateful for the journey. God has done many amazing things in and through this massive trial, it would be foolish to wish that away. Though in my weakness, I wish for “normalcy”, we truly have an amazing life, an amazing God, an amazing story, and an amazing son!

Happy New Year everyone! I will commit to you if you can do the same with me in at least trying to pursue a healthy perspective while finding the blessing in the storm this year of 2014. Pain hurts…and no matter how difficult life gets, emotions are natural….but let’s cling to a healthy perspective and the understanding that God is still sovereign and is still in control.

#GoBeckett
#ODAAT

UPDATE (12/29/13)

Well, it’s been a while since I’ve written an update (nearly a month), so we’ll see how this goes.

First, Beckett is officially 1-year-old! Wow! I truly can hardly believe it. We had a lil party yesterday and had a lot of fun celebrating! Furthermore, my brother wrote Beckett another song. You may remember his first song written back in January titled “Restorer of my Heart”:
http://youtu.be/AaYSuuoos00
We played his new video at the party, and it was a very special moment. You can see it here:

He recorded it completely acapella, and I am truly so blessed to have such a talented brother like him. Thank you Joshua.

A few days before his party, we obviously had Beckett’s first Christmas….it was great!! Here’s a little secret about myself…I LOVE Christmas! So, to spend our first Christmas together as a family was certainly extra special. It was a very busy and tiring week filled with a lot of fun and time with family. Beckett was such a lil champ. He truly is a good little boy. As you may have read in Leah’s last post, he’s sitting up now, so we were just sitting him in front of presents and Christmas trees, family pictures, etc. He’d just sit there and smile…just soaking it all in. I hope you got the chance to see the picture we posted just before Christmas in his lil Christmas outfit (the one with the bow tie)…it is so adorable! But if I get the chance, I’ll try to post a few more pictures “soon.”

So many of you continue to be soooo amazingly encouraging. We’ve received some very special Christmas cards, words of encouragement, and many other thoughtful things are continuing to help lesson our burden; so I just have to say thank you once again for not forgetting about us, but more importantly, not forgetting about Beckett. It’s been an amazingly challenging year, but a year filled with amazing blessings as well! My brother encouraged us earlier today with a quote he heard, that said, “You never know how strong you are, until being strong is the only choice you have.” As I’ve mentioned before, this strength is divinely inspired. To many, that may sound very mystical or hoaxie…but there is no other way to explain it. The moments we found ourselves focused on God’s limitless strength are the moments of true greatness. However, as a sinful and selfish person, I often deceive myself into trying to accomplish tasks on my own….just ask Leah, these are my most severe moments of weakness. But, as the quote kinda goes, I never knew just how strong I could be until I had no other choice but to rely on something greater than myself. The Lord has been our strength, and has carried Beckett through many dark days, and we are blessed with a truly remarkable and miraculous gift this Christmas season. We are so very grateful!

We do have an appointment for Beckett this upcoming week. I actually usually look forward to these, as they tend to usually confirm just how well it appears Beckett is doing. He’s looking better and better on the outside, but it is certainly the “inside” we need to continue to do well. He is still on over 130 syringes of meds per week (which keeps us busy), but he is doing so well that I don’t think our doctors want to “rock the boat” right now by weaning him off of any. So we remain focused on therapy and continual development. One day at a time, right?

Which reminds me (and this is not some sort of shameless plug, just a reminder), we do have some more “Beckett Wristbands” left. If you are interested, check out our website on how to get you hands on some:

Wristbands

If the price is an issue, but you’d still like to have one, just let us know…we’d love to figure out a way to still get one to you.

That’s about it. What a year, huh?
To God be the Glory!
#GoBeckett / / #ODAAT

UPDATE (12/1/13)

December 1st. Can you believe it? 25 days until Christmas (or 24, however you wanna look at it).

In just a few short hours I will be flying out of the country for 15 days. Yes, this means that Beckett’s appointments last week went quite well. I asked our cardiologist if it was crazy to be leaving the country considering Beckett’s “condition”, and he said not at all. Beckett is doing so well right now and we are getting closer and closer to doing more and more “normal things.”

If you haven’t had the chance, be sure to watch the latest video we posted recapping this entire past year in a few short minutes. It’s hard to watch that video and not think about how much of a miracle Beckett is. I feel as if phrases like that are becoming so cliché, but with Beckett…it’s the real deal. There were so many times I truly wasn’t convinced we were going to pull out of this and bring our son home someday. Yet, here we are….having beaten the odds. Why were we blessed with this gift, and yet so many of our friends we know or have met were not? Here is where I lean into the Lord’s sovereignty once again, not as a crutch for excuses, but for support in faith. I could ask a similar question, “why would it be fair for Leah and I to have to go through everything we have with our firstborn son?” Or, “Why is it fair that Beckett had to go through all that?” That’s not “fair”; yet, I must trust wholeheartedly that God was and still is in control.

This Thanksgiving, I was (and am) certainly thankful for family, for my wife, for my inspiring son…but truly thankful for God’s sovereign power over me and my family. If any of us have watched this entire journey unfold and have failed to see Jesus in and through it all…we’ve missed the point. I’m thankful that God can empathize with my pain (or I with His) in watching my son suffer. Yet I am all the more grateful for Jesus and the sacrifice he made for us….and I vow to teach my son the good news of Jesus, and learn to better love Him and others each day of our lives. (Proverbs 22:6)

I cannot believe we are LESS than a month away from Beckett’s 1-year-old birthday! It’s hard to believe that it’s nearly been an entire year since this journey began. To commemorate, we are certainly going to be doing up his party well! It’s a huge day of celebration…and it’s gonna be beautiful.

Speaking of commemoration, if you haven’t gotten one yet, don’t forget about our Becket Bracelets. Yeah, they are a suggested donation of $3, but really, we want them to be used and worn as a symbol of God’s sovereign hand, a memory of His goodness (even in the midst of the storm), and how we are instructed to handle trials (and I’m not alluding to the point that we’ve done it perfectly…by any means). Sooo…if you haven’t gotten one yet, or if you can’t afford the $3…please let us know. We’d like for anyone who feels invested in this story (or even if you’re not) to have one.

Wristbands

The voting for the Gerber Baby Photo Contest has ended (or, at least it was suppose to by Dec 1st…I was still able to get another vote in this morning). Soooo, I’m not sure yet of the results. But as soon as we hear anything…we will let you all know.

I’m not sure when our next post may be. It might be a while. With me gone and Leah assuming the extra responsibilities while I’m gone, these updates might have rightfully dropped in priority (I’m sorry). But we definitely try to write them when we can. Sooo, maybe if either Leah or I can get a chance, we’ll post again “soon.” Otherwise, enjoy this month celebrating the birth of our Savior.

Merry Christmas!

#GoBeckett
#ODAAT

UPDATE (11/10/13)

First, Beckett has officially been off of Methadone since Wednesday morning! We actually do not believe we have properly celebrated this yet (Leah or I). But we think it’s because it was such a long battle, and it’s kinda hard to even believe it’s behind us. Buuut, it truly is!! Sooo, that’s a huge milestone.

Secondly, Beckett has officially breached 20 lbs! That’s amazing, especially with all his reflux and throwing-up issues. And though that hasn’t really subsided at all, he really handles it quite well…not necessarily in the moment, but he recovers quickly. At night, however, we have to “watch” (or, more-so, listen) for it (the throwing-up). It happens quickly, and he always needs help with it (and could potentially choke if we aren’t there soon enough to help him). Thankfully, both Leah and my ears are pretty tuned in to it, but the mad-dash to his room in the middle of the night when we hear him gagging through the monitor is quite disorienting….but we’re making it work.

He actually sleeps quite well. Yes, there are times we wished he slept in a little longer, but all-n-all…we really can’t complain. He loves his crib, and just rolls around all night long from one side to another. No exaggeration, he genuinely seems to make a least two full rotations in his crib throughout the night. He definitely takes advantage of the entire real estate offered in that lil crib. I think it’s funny, but we do get concerned because there is a feeding tube connected to him, and we certainly do not want that to get wrapped around anything and create an unnecessary issue. But on a lighter note, that tube can be fun to dig out in the middle of the night when we need to give him meds and he’s sleeping on the part we need to get to. I’ve had to be quite creative during these situations, cause he can tend to be a light sleeper (at times….not always). Once he sees ya, it’s game over….you lose! 🙂

Therapy has continued to go well. He needs a lot of attention to catch him up, but Leah does a fantastic job with him throughout the week, and I certainly enjoy contributing when I can and throughout the weekend.

I took him to church for the first time today. We just hung out in the back and I strolled him around to keep him satisfied. But honestly, he’s such a good lil boy. He just looks around and soaks everything in. It’s a lot of work to take him out, but it’s worth it, and it’s good for him.

I had a fantastic birthday party last weekend. It was great to not only celebrate another year, but to celebrate this year as a father. I’m truly blessed with an amazing son and family, and even an amazing heritage. It’s my father’s birthday today, and I couldn’t be more proud to be his son. I only hope and pray to be able to pass along his work ethic, generosity and love to my son (and future children). He’s trained me well, it’s now my turn!

Don’t forget to vote for Beckett. Well, don’t feel like you have to, but we just find this something fun to do, and we obviously think Beckett is ridiculously cute and deserves a title such as “Gerber Baby” (whatever that means). He’s just cute, and if you agree…..vote! 😉

Lastly, you may have noticed the post that my sister and brother-in-law did for us on our website. We have new Beckett Bracelets. The first edition of these went so well, and we’ve consistently received requests for more, so we decided to make some new ones. I think they look great! If you live near Macomb, MI, Archbold, OH, or Upland, IN and would like one, you can look up one of us “venders”. Otherwise, we can accommodate shipping from our website. Yeah, of course this is an opportunity to raise a lil money for Beckett, but really, I like how this can be a representation of Beckett’s journey and what that has meant to you. Sooo, if you like ’em, be sure to order some soon (cause they may go fast).

God is soooo good. We’ve come so far! I was literally crying like a big baby the other day while just sitting and playing with him. Occasionally, “it all” just hits me, and I tend to get a lil emotional of how amazing my son is. God has sustained him, has sustained our marriage, and so far even my schooling. Leah has been a rock, family has been so helpful and supportive, and I couldn’t ask for better friends. AND to all you who I haven’t even ever met…..are you serious?!….your consistent support has literally stopped me in my tracks. It’s amazing. Beckett’s website has been hit way over 100,000 times in just 10 months…the support is astounding. I just hope this journey has been seen as a journey of hope and a vicarious opportunity for you to discover how you do and will decide to respond during trials. We have certainly not done it “right” everyday, but by God’s grace and strength, we are still standing…

Alright, alright…I’m done.
Remember:
Vote (if you wanna) – Gerber Photo Search 2013 
Get a bracelet (if you truly love Beckett….just kidding)
And never doubt God’s sovereign plan. He will bring you through, even if it’s not how you had it planned.

#GoBeckett
#ODAAT

Hey y’all. The time has come. If you feel obliged or encouraged to, please feel free to click the link below and vote for our precious lil Beckett’s photo. He’s such a cutie!
Oh, and I think you can share the link too. The voting is for nearly a month (I think)….sooooo, spread the word!! THANKS!! 🙂

Gerber Photo Search 2013 

Here’s the Gerber link…go check it out!!

Gerber Photo Search 2013 

— with Leah ‘Whiteley’ Rupp.

Hey Beckett followers, please pray for Leah and her family as she has just been made aware that her uncle had a stroke and suddenly passed away last night. Clearly this has been a challenging year for all of us, and certainly them in particular. Uncle John was truly a great man with a very caring and giving heart. We will miss you!

UPDATE (10/6/13)

Again, sorry for the delay in posts. I wish we could do it more often, but it can be challenging to prioritize and carve out the time to do it. However, your care and support have certainly earned and warranted it. But I may have to be concise.

First…….and honestly, Beckett really is doing great!! As I seem to qualify that statement often with, “but we still have a ways to go”, the distance we’ve come thus far is truly astounding to me.

We’ve been trying to get him out more, but it’s always a struggle. While I’ve been in school and work, Leah’s been able to take him out in his stroller, which is always a good time. Beckett just stares and stares, especially when he’s looking at something or someone new. The more “normal” stuff we can do, the better. We even took Beckett out shopping at Target the other day.

A few prayer requests and concerns:
Beckett’s J-Tube has been quite sensitive for him the past few days. The simplest thing seems to set him off in a complete “meltdown”. We did have an appointment this past week with GI about it, but are still waiting to hear back on how they want to proceed. They did say that everything looks “ok” (other than how sensitive Beckett is to his J-Tube being touched), but want to put their heads together with our Cardiologist on some upcoming tweaks (possibly exchanging the J-Tube to a GJ-Tube, discontinuing Beckett’s continuous feeding, etc.). We aren’t overly concerned, and their overall assessment was encouraging, we just don’t like the pain Beckett seems to be dealing with concerning it. We just don’t want something bad to happen.

Also, Beckett’s physical therapy has yet to start. Apparently there was a hang up in some paperwork…..soooo, we’re still waiting, just trying to do as much “therapy” on our own. Please pray that this picks up soon and that Beckett responds well to it.
Thank you!!

On a really exciting note, we are less than a month away from Beckett being completely off of his Methadone (if Beckett remains on target with our wean schedule…as he has been)!! Amazing, huh?! It’s been a long road, but to only be a month away from being done with that horrible (yet frustratingly necessarily) drug, is amazing!

Lastly, I apologize (again), for not posting very many pictures of Beckett, but I will soon. I’m promising to post soon because I was recently made aware that the Gerber Baby photo contest has officially begun. As I was skimming through the rules, I noticed that one of the requirements was to have a photo less than 30 days old. So even though we’ve already voted ourselves on some photos a few months ago, and we have a lot of really good photos to choose from, it appears I need to snap a few new ones. When I get the chance to do that, I will…and I’ll be sure to upload them so you can all see (and maybe even “vote”).

Friends and family continue to be such a blessing. Everything from helping us with meals, cleaning our house, helping with laundry, or even automobile repairs. We are so blessed. Hang in there with us, each of your support is greatly appreciated!!

“Take Them A Meal”
http://www.takethemameal.com/meals.php?t=ENMX4112

#GoBeckett
#ODAAT