Heart of Beckett

UPDATE (2/25/13)
Hey everyone, sorry our updates have become more sparse. We do try very hard to do at least one per day, but oftentimes we aren’t able to even get to it until late in the evening (slash) right before we go to bed…like, right now. Life is starting to catch up to us some. Not only have things with Beckett been a little more hectic the past 24-48 hours, we are dealing with things like being on the phone with chase bank about our mortgage for over an hour. But that’s life, and we learn to flex and roll with what comes our way. With all that being said, lets get to “talking” about who y’all are really interested in.Beckett has had an interesting past few days. If you read Leah’s post from last night, we’ve had a number of things to truly be thankful for, yet some fairly disappointing news as well. Let me break it down and update you tonight by way of a list.

The Good
– Beckett is OFF VapoTherm, and is rocking it! In fact, multiple times today we’d look at him and his nasal cannula is out of his nose under his lip, or even in his mouth…yet his oxygen levels have been great. We are totally expecting him to possibly come off of oxygen altogether sometime soon!
– Beckett’s MRSA is looking better. They did a focused ultrasound on his source of infection and concluded that it is still external. So that’s great! (we don’t want systemic)
– He fell asleep in my arms tonight and remained asleep as we put him back in his crib. This hasn’t happened for at least a week now (possibly due to the tea Leah was talking about…#caffeine). It was quite nice, actually, to walk out of the room watching him totally conked out.
– My brother Joshua and his wife Julia got to see Beckett again today, and Julia got to hold him for the first time. It was a great cap to a great weekend that both them and many others helped make happen.

The Bad
– We spoke with the Infection/Disease Doctor today. He was encouraging in some sense, but also somewhat troubling. He did his job…but in doing so he had to explain how “insignificant” MRSA can be, OR how “devastating” this could be for Beckett. Beckett is on heavy antibiotics, and they are treating this very aggressively (taking no chances…which I certainly am appreciative of). It’s scary, and yet another thing my poor little son has to deal with now…but he’s pulled through so much worse. We are being told that he will be in isolation (which means we have to wear these yellow gowns and purple gloves while in his room) until he is discharged to come home. It’s kind of awkward, hot, and inconvenient…but we’ll do what we’re told if it’s gonna help Beckett.
– He was poked and prodded what seemed like a hundred times today. At one point I could hardly handle it anymore and had to stand up and just walk around the room (which it’s a pretty small room…so I was probably more-so just spinning in circles). Leah and I both have our breaking points…and unfortunately I believe she found hers a few times throughout the weekend, and I sniffed mine a few time throughout today. Beckett cried and cried today (and rightfully so) after each time he got poked for some other new reason. Poor little dude, he’s been a lil human pincushion. (which leads me to my next point)
– Beckett will be getting his PICC line back tomorrow. This is what he had last week that I had the opportunity to “help” pull out. A small part of me had this feeling of “I hope we won’t need to put this back in here again”. Lo-n-behold, he needs it back. In the long run, this is a good thing because they will be able to pull blood from this much easier and even administer medicine through it. So, I guess it’s a good thing…but it’s still a bummer, and I’m sure Beckett isn’t gonna enjoy it.
– I’ve also made the difficult decision to miss my very first class of grad school tomorrow. :-\ This was a difficult decision, but I did/do have full support from my faculty and classmates…but I’m just trying to do my best to keep up and appear as if this is entirely doable. Though it truly may be doable…balancing my schooling with supporting my wife, my son, normal life/bills/etc has truly been quite taxing on every level (emotional, spiritual, physical, mental….). Nobody told me this would be easy though, and we are truly blessed with an amazing support system. To God be the glory…just another opportunity to be reminded to rely on him and him alone, right? One day at a time….

Beckett has had setbacks, but nearly every time we’ve had a setback we’ve had the opportunity to see why (which isn’t expected, and is certain not a guarantee). Just last night we spoke with a family who was told their child may need to be put on Ecmo. Ecmo is what Beckett was on for 9 days. It’s a scary beast, but is clearly intended to help. We were able to gently tell this family the truth about it, but also instill a sense of hope and peace. It was a great opportunity, and I’m thankful for all the opportunities Beckett’s lil life of 2 months has had to minister to so many. This has been so humbling.

I want to conclude with my personal thank you for the benefits this past weekend. I’m pretty much speechless, but will do my best to muster up a few words. Clearly I must say “thank you”. Leah and I are truly blown away by the generosity of so many of you. We feel so loved, and yet, feel as if Beckett is truly loved all the more. So many of you are thinking and praying for him, and I couldn’t ask for more…I truly couldn’t. And financially, you all were so wildly generous….I’m not even quite sure what words to type next. I guess, “thank you”….but that hardly seems sufficient. And to all of you who helped organize, run, cook, bake, clean, etc, etc, etc….again, not sure what else to say other than “thank you”. In a very humble manner, I must say that I do believe Beckett is worth it…but I hardly feel worth it to have such an amazing son like him. You all are in for quite the treat when you get the chance to see/meet him in person some day! But anyways, again…thank you!

I’ll wrap up this update with a quote from Ernest Hemingway:
“It is good to have an end to journey toward; but it is the journey that matters, in the end”
Love you guys!

UPDATE (2/22/13)
-mixed messages-
-proper perspective-
As many of you know, we were recently updated that we should expect to be here for at least another month. So what seemed like a difficult road of 1 operation and being admitted for 6 weeks has become 8 operations and nearly 2 months thus far with another month to go. Now, I don’t say that with any animosity (believe-it-or-not), but rather to widen the front door to this journey of Beckett Jude Rupp. Our Cardiologist spoke with Leah today and said, ‘No, No, No….you could possibly be out of here as quick as a few weeks or so’. Additionally, the surgeon popped his head in our room again (we haven’t seen him in weeks), and said thy he’s really looking good. He was actually surprised when we told him that we were told we’d be here for another month. The one thing we have learned over the past few months is the concept of ‘I’ll believe it when I see it’. That may sound a little coarse, but rather we are simply pursuing a proper perspective to help manage probable disappointment. We really do live in the moment, we try not to get ahead of ourselves, and as we were taught at an early age: ‘do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.’ (Matthew 6:34)
We are so thankful for the admirable span of ‘good days’, and certainly long for many more. Beckett is doing well:
he is on a continual wean of his VapoTherm (he’s down to 2 liters…we want 1, or less…jsyk)
they’ve weaned his methadone again, and all the Docs and Nurses say that he really is looking good.
Sure, we want him home. Sure, we want him completely healthy. Sure, I desire a sense of ‘normalcy’. But really, what more do I have to be thankful for? God has been so good to us:
I held my son today.
I kissed my wife.
Our current frustrations are on ‘when can we take him home, a month, a few weeks?’. We weren’t even having these conversations a month ago.
If we live a life longing for what’s ahead and not genuinely enjoying our current blessings and that which we need to be thankful for….we will lead a miserable life.
We’ve had a great evening this evening! We were FaceTimed into Beckett’s first benefit concert all the way up in Gaylord, MI. It was so great! They had something like 140 people show up to a dinner they did and then they had a service afterwards which consisted of great music and even an opportunity to ‘show him off’. I’m a proud papa, and he’s an amazing son! I should just provide my FaceTime info, set up and google calendar/schedule and show him off to anyone interested! 😉
Sooooooo, with all thy being said…we had a great day, and I’m looking forward to the upcoming benefits both tomorrow and Sunday. I am currently planning on being at both, BUUUT, even though I usually don’t mind speaking in front of people, just the thought of it right now makes me begin to tear up. I will be more than willing to ‘meet-n-greet’ at each of these events, but I’m confident it will be 48 hours of tears (sorry in advance….I’ll try to be strong). Speaking of tears, the last time I cried in front of a large group of people (and it kind of caught me off guard) was a ‘best man speech’ at my friend, Seth Abram’s wedding. What a dear friend. I’m actually tearing up now as I write about him. He is an amazing gift straight from God to all he meets. He was planning on playing at the concert tomorrow night, but I have just been informed that he in the hospital right now. I guess his small intestine has twisted. I’m not certain how critical this is, but I obviously know that isn’t how ‘it’s suppose to be’. Please keep him, his wife and family in your prayers. Though I would have loved to have him at the benefit tomorrow, I much rather him get healthy (obviously).
Anyways, I don’t mean to end this update on a somber note. But just remember, count your blessings, live in the moment, kiss your kids, love your spouses, put down your phones, stop reading this post ;-), and be thankful for all that we should be thankful for.
Blessings to you all….I look forward to seeing (and crying in front of) you soon!

UPDATE (2/18/13)
It’s about 6:00pm, and I’m still down here with Beckett. I have to go home later this evening for class tomorrow in which I also have a paper due that I still need to finish, then a 10 page paper due on Thursday. My next few days will consist of classes and writing, which unfortunately involves trying to disengage mentally from everything going on ‘down here’ to better focus on priorities ‘up there’. I’m learning that this is getting more difficult than any easier. But I truly am thankful for Beckett’s progress, and do find some strength from that to persevere.
Deuteronomy 7:9 – Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.
Literally just a few minutes ago, I helped the nurse take out Beckett’s PICC line. This is actually kind of a big deal. It basically means that the Doctors don’t think they necessarily need an IV source for Beckett anymore…even for ’emergencies’ (well, if it was a big enough emergency they would just have to put another one in). With how slow this stage has been with Beckett’s progress, we are quite thrilled for this news in particular (so please feel free to rejoice with us! ;-)).
We are hoping to set up a FaceTime call at all the Benefits for Beckett. So if you can make it out to one, please do. We are looking forward to showing him off! But one day (and hopefully someday soon), you’ll get to meet this little bundle-of-joy. Just ask those who have had that opportunity….you’re definitely missing out!! 😉
Thanks everyone…we love you all. We are so thankful with how many of you are still keeping up with Beckett’s story and even share it with others. I hope this has been as much of a blessing to you as it has to us!

UPDATE (2/15/13)
It’s so good to be back down here with Leah and Beckett. Beckett had another good night, and we are quite pleased with his continual progress. We haven’t really had any major set-backs for quite some time now (as some wouldsay, ‘knock-on-wood’). We do, however, battle the inevitable mindset of ‘when is something bad going to happen?’. Clearly that is an unhealthy mindset, so we continue to relish in the moments of ‘continual progress’ even though we have been conditioned (#Pavlov #DrMoeschbergerShoutOut) otherwise.
This then is where I’m afraid my update may skirt the line of a ‘personal journal’ and an ‘informative update’. I also apologize for writing so incredibly informal…I know I write like I talk (sorry #DrGaier). Hopefully y’all have been able to follow along just fine.
This week has been considerably difficult for me. At times I feel as if I’ve hidden it well, but then I’ve been randomly told ‘you look tired…yeah, I can see it in your eyes’. I keep telling myself (and others) that I’m ‘doing my best’, as if to verbally self-medicate the situation. Currently, I’m really struggling disengaging mentally from Beckett to focus on everyday responsibilities and especially my schooling. What may have already taken me a few hours to accomplish seems to take at least twice as long. When you reach Grad School, typically it is something you really care a lot about and, though challenging, you discover a new and fresh motivation to study and learn. Well, it’s currently so difficult to stay engaged in my studies right now when ALL I really want to do is be with my son and wife. My concerns aren’t really revolving around Research Articles, Qualitative Studies, and certainly not my Thesis. I’ve never had to struggle this hard to genuinely engage in my coursework than right now….and every time I do, I experience a great deal of regret and guilt. My priorities are here, with my family. I’ve explained it before that it may feel as if I’m juggling bowling balls, but I was going to try to see how long I could do it for….well, I guess I’m not really in good ‘bowling ball juggling shape’. 😉 Though I know classmates and professors may read this post, I couldn’t help to be a lil honest and vulnerable in this post. I do sincerely care about my other responsibilities, but this tension may be why they are called ‘responsibilities’ and not necessarily ‘hobbies’ or ‘leisure activities’. I just did the Clifton Strength’s Finder test (again), and was reminded that my top strength is ‘Responsibility’. This then should bode well for me, but it doesn’t necessarily make the situation any easier. I am reminded once again to conquer this journey one day at a time, and stop trying to do it on my own. But lets not so easily forget 2 Corinthians 12:10, when I’m weak He is strong. My pride too easily takes over, I won’t accept help, and worst of all I am deceived that I can do this without the Lord’s help. Contextually, I must be reminded of the verse right before 2 Corinthians 12:10…that “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. My faith and my God is not a crutch for life. I’ve seen the unexplainable, I’ve experienced ‘the effects of the wind’ though I cannot physically see God, he’s is so clearly all around me, and he cares. He cares about my melodramatic update. None of this is overlooked. I (WE) are in good hands, and the only hands I want to be in.
As always, ‘To God be the Glory’ (sorry how ‘Heisman Speech’ that sounds, but its true). Now on to my schoolwork in the lobby of a woman’s hospital. lol One day at a time.
https://heartofbeckett.com/