Heart of Beckett

Today was another good day. I met up this morning with some “Beckett Fans” back in Upland at our house to discuss options on how to fix our bathroom (supposedly we need a new tub…ours was leaking) and even fixing the drywall from our roof leaking a few months ago (there was a massive storm in our town). Normal wear-n-tear from owning a house is expected, but these issues have been especially stressful to be dealing with these past few months. However, we are so thankful for an amazing community willing to help out during this time of need. Home repairs are kind of the last thing we want to be dealing with right now, but it has to get done. I was originally planning on possibly putting in a patio this summer (before we knew about Beckett’s condition), but finances aren’t necessarily permitting and priorities have had to be rearranged. Hopefully someday. 🙂

I spent a few hours today back on campus (at TU) and was encouraged by many familiar faces who have been following our updates. I can’t believe that Beckett will be having surgery one week from tomorrow! We knew it would come fast, and it has. It’s actually scary to talk about it. I’m not sure those whom I was talking to could hear it in my voice (because I was trying to hide it), but I couldn’t help but literally quiver a little when talking about his surgery being one week away. I know it isn’t really a healthy thought, but if/when I would say out loud, “I hope this isn’t the last week with my son”, it would require all the strength I had in that moment to not break down. Again, I understand that thoughts and statements like that aren’t necessary or helpful, but it certainly puts this week in perspective and focused my attention on what is important right now. There is no convincing reason to believe that Beckett won’t do fine with this upcoming surgery, but sometimes it’s hard to not imagine the worst. I guess it does help realign my attention to cherish these moments, and I would say that there are times thoughts like that could be healthy even in YOUR lives to not live like tomorrow is a guarantee. I’m not advocating that you should live in fear, or constantly assume that the last time you see someone may be the last…but I AM saying that this journey has certainly helped me decrease how often I take situations, friendships, and family for granted. For some of you, this might be a healthy concept to meditate on. But I must say, my intention has not been to use this blog to tell others what they should be doing….but rather, share with you what it is we have been wrestling through, struggling with, failing at, and hopefully learning! It’s been a delicate balance to write transparently, honestly, and boldly…so I hope you’ve found this blog to be informative and encouraging as it has been therapeutic for us as well. It isn’t always easy taking the time to write out our thoughts and daily activities each evening (especially having a long stressful day), but we have such an amazing following who have supported us, prayed for us, encouraged us and have simply been there for us nearly SIX MONTHS NOW! …..it’s amazing! You just deserve it. It’s only fair to try and write down a few words each evening to document and share this amazing journey of Beckett Jude Rupp with the world (our website has been hit by 49 countries…that’s crazy!)

So, to wrap up. I completely anticipate these updates getting more and more boring, as I hope to have less and less to share (other than how amazing Beckett’s recovery is going). As I’ve mentioned before, we are eager and excited to bring Beckett home (whenever that day may be), and look forward to showing him off to whomever wants to meet this little stud. We continue to ask for healing, and certainly an amazing, smooth, and successful surgery next Tuesday (July 2nd!). Thank you!

#GoBeckett
#ODAAT

Another good day. Beckett can still get a little cranky here-n-there, but we think it could be either normal baby stuff, some soreness in his legs still, or possibly even teething. However, he’s not always cranky. When he wakes up naturally (without loud noises, needing to poop, spitting up, etc), he’s quite pleasant and happy.

Our day began with Leah holding Beckett. She was the first to try out the fancy new chair (while holding Beckett) in our fancy new room here at Riley. He slept well, but eventually Leah was woken by something that felt a little warm and possibly wet. Yup, turns out Beckett was peeing and it was making its way outside of his diaper. Ooops. I was actually out, and returned to him on the floor playing with Physical Therapy. He wasn’t too happy about it. She said that Beckett is usually hit-n-miss; sometimes he loves therapy and borderline “shows-off”, and other times he wants nothing to do with it. This was kind of a “middle-of-the-road” kinda day. He was tolerating it, but gently moaning and whimpering the entire time. Eventually he “snapped”, and was over it.

Anyways, the afternoon proceeded with more friends. We had another St. Vincent medical staff visitor. It’s amazing that we haven’t been at St. Vincent’s for more than 2 months now, and we still get visitors from there….so blessed. So, she held him for a while and we just caught up as he slowly drifted asleep in her arms.

Then, Leah’s Dad came down for the evening. It was kinda hand-off time. Our friend from St. V’s had to leave, so we just had PaPaw slide right in. He hasn’t been able to make it down to see Beckett for a little while, so it was nice to give him the chance to hold him once again. We then went out to eat with him and returned to a sleeping baby.

Speaking of, Beckett has been sleeping a lot…but it’s a good thing. When he is awake, he does play hard…but it really tires him out, so then he sleeps hard. He’s spent A LOT of time on his back that he has definitely been developing a flat head…and not only a flat head, but it’s started to angle off to the side now. In the grand scheme of things, this does not really matter…but PT did mention that they may start discussing needing to give him a helmet (which, I guess helps re-round a babies head while it is still moldable). Not a big deal, but I just thought I’d mention it just in case we start posting pictures and our cut little Beckett is sporting an awesome helmet. 😉

Lastly, you may have notice that I posted a picture of 4 photos of Beckett. I need your help to determine which one is your (or your family’s) favorite. Once we receive word when and where to upload the photo (which, we are now being told may be as late as this upcoming Fall…but we’ll see), you votes will help us decide which one to choose. It’s a difficult decision (well, at least for us it is). We think he is such a cutie, and believe it or not…these pictures still do not do him justice.
Oh, and if you couldn’t tell…option “B” is the Gerber Photo I edited and posted a few months ago:
https://heartofbeckett.com/2013/03/18/march-18-2013/

Thanks everyone! #GoBeckett #ODAAT

Today has been a great day, yet again. To state it briefly, I was blessed with many hours of playing, holding, and simply loving on my baby-boy. As I was leaning over Beckett’s crib this evening a few inches from his face, the room was dark…and I began to cry. Beckett was reaching out with both hands rubbing my beard, gentling giggling, and probably curious as to why his hands were getting so wet (from my tears). I was being reminded of a day back in January (what seems like forever ago)…….let me explain:

We all process things differently, maybe similarly…yet each are unique. I naturally guard myself from probable pain…many of us do. I have a confession to make that I cannot recall if I’ve ever posted about. Back in January I came to a humbling realization that I began to guard myself from potential (and what seemed probable) pain…deep and destructive pain. As things were touch-n-go for many days in a row with Beckett, I found myself secretly withdrawing emotionally from the situation. It’s a simple game of expectations; if I foresee something panning out a certain way, I will align my expectations to not be disappointed. Naturally, I began to prepare myself (however I could think of) for the disappointment of loosing my son. It wasn’t necessarily completely selfish, as I can remember thinking of ways to best support Leah if that day ever came. However, I can distinctively remember being smacked in the face one evening with the thought, “What are you doing, Jonny? See that boy there, your son…is he not worth the extra pain of going ‘all-in’…even if it doesn’t pan out how you desire?!” Humbling, e.h? Needless to say, I broke down pretty hard. What did Beckett ever do to not deserve his father’s unconditional, unwavering, relentless love…never “holding back” for fear of pain. The fear of loosing him has yet to go away, but my love has not softened…I have chosen to go “all-in”, I want to go “all-in”…my son is worth it! He’s worth the extra pain that may come, but you know what (?) we are blessed with deeper love and deeper joy than I could have ever imagined in having a son. I’ve seen too many families loose children over the past few months, yet I have been blessed to celebrate a day that announces my fatherhood to that precious little boy laying right there in the crib next to me. Today is a day that “I” can celebrate life, through my son, with another non-guarenteed day. As I’ve mentioned before, none of us are exempt from this reality…my “reality” is just a little more fragile and transparent than most. Keep in mind, this is not unparalleled to the love of our FATHER. I won’t get too much on a “soap box” here, but hear me when I say, the relentless love you’ve ever felt towards someone else is merely a glimpse of the love our God has for each of us. Do not ever forget that. And if you’ve yet to experience that, please talk with us. I promise, I’m not crazy. I’ve seen the truth, and it has set me free (John 8:32).

So fathers, I hope you’ve enjoyed today. I hope you’ve taken this opportunity to celebrate the gift it is to be a “Dad”. You are not guaranteed another day with any of your children (or family, or friends); so soak it up, live hard, love hard…however that may flesh itself out in your life. I am proud to say that since that embarrassing day in January, my relationship with my son is never something I guard against. I have chosen to go “all-in”………….have you?

#GoBeckett
#ODAAT

What a day! Not bad, just interesting…

So, as you may (or may not) know, Leah works on every Saturday and Sunday now from 1:00pm-1:00am. After all the chaos from yesterday, she was having second thoughts heading into work today, but as a mini spoiler alert, she did end up going into work.

As we walked from the parking garage to Beckett’s room, I asked Leah if she thinks he stopped doing the arrhythmias sometime last night. She wouldn’t guess, so I said….”I think he stopped.” My decision was based on the fact that I thought a lot of it may be because he was still in some pain from the cath, and I knew they were willing and ready to give Beckett some pain meds last night if his “fussiness” continued. She agreed, and so that is how we approached his room this morning. We found out that they did end up giving him some morphine last night, but half-doses. Apparently (and not surprisingly), the half-doses hardly “touched him”. As the Cardiologist put it today, “that was probably a spit of morphine for him” (assume we all understood his level of tolerance by now to pain meds….unfortunately). Anyways, he was still doing the arrhythmias when we got to his room…bummer…it was quite discouraging. In fact, his heart rate was crazy…and weird, for a while this morning. We asked if they would get Cardiology because of how bizarre it was…and because of how long it has been going now. They went to get ’em, and they showed up a few minutes later. It was a whole team of them, and the lead Cardiologist in a long and round-about way basically said that he is fine and they aren’t too worried about it. Ironically, as soon as they got there, he was as-calm-as-can-be and was just cooing and showing-off. Though he was still doing the arrhythmias, they weren’t nearly as crazy as we had seen just a few minutes before they arrived. We laughed about the irony, but it was kinda frustrating at the same time. Leah decided to leave for work, right after Beckett flashed her a big smile. It was great timing. However, he then immediately began to moan and groan, so I began to sooth him while she said her “see-ya soon”s. We are bummed she cannot be with us during father’s day tomorrow, but she is doing what we need right now for the family, and I cherish, love and respect her so much for that. I know its bothering her that she won’t be with us, but I truly pray she won’t feel an once of guilt….because it’s unnecessary and not warranted. Furthermore, Beckett only continued to cry and cry and cry. I went to pick him up, but we noticed that he blew through his diaper. So, he not only needed to get that changed (in a timely manner), but to also clean both he and his bed up. The nurse and I did that as fast as we could (she did a lot of it, and I tried to help), but then I picked him up to calm him down. At this point, he is literally out-of-control. He was breathing crazy fast, he was kinda delirious, and was just catching his breather to only try to cry harder. I finally got him calm, and looked up at his monitor to noticed that he literally cried his arrhythmias away. To this hour, they’ve been completely gone….which is AWESOME! Its a shame it had to happen like that, but I’m just glad they’re gone…it was gettin’ kinda nerve racking (no matter what Cardiology was saying…we couldn’t help but to be nervous about it).

Now, on to a really cute story. I don’t mean to compare Beckett to a dog…but have you ever seen those youtube videos of dogs talking and saying things like “I love you”, “hello”, “I want my momma”? Well, it may have just been a “sound”, but shortly after I got Beckett to calm down this morning, he was just staring into my eyes and I leaned in and said, “I love you, Beckett” and I swear he said, “I love you” in a squeaky little baby voice. To verify that I am not going crazy, our nurse was in the room at the same time with her back towards us and spun around immediately with her eyes wide as we both said, “Did you hear that?!” He totally said “I love you”. It was said so “clearly”, that I’m tempted to document this as his first words. Again, I’m not sure if he really knew what he was doing…but either way, the “noise” that came out of his mouth was the noise/words “I love you”. How cool is that?
http://www.youtube.com/watch?v=qXo3NFqkaRM

Beckett has been pretty fussy today once he gets tired. I literally pretty much held him ALL day today (which is not a complaint). I tried to put him back in his crib a few times to only fail and wake him in the process. However, I was able to calm him, and we would then play for about 20-30 minutes until he’d start rubbing his eyes (which is his “tell sign” that he is getting tired. You might as well tap a timer, cause he’s T-Minus a few minutes away from breaking down). Sooo, this would involve me picking him back up and holding him, cuddling him, or sitting down with him. Though this (after all day long) killed my arms, back and even tailbone…I’d do it all again in a heartbeat (no pun intended), and plan on it tomorrow! 😉 I do feel he is pulling out of his goofy behavior from the cath (…from these past few days). He had many more situations today that seemed more like him, soooo…that was quite promising.

Thanks everyone for the prayers, concern and support. We feel it. We love it. And am truly humbled by it. It appears we have a long way to go, but the fact that it’s been nearly 6 months and we still have such an amazing following is extremely encouraging and humbling all at the same time. Oh, and something Leah pointed out…Beckett’s first surgery was January 2nd…exactly 6 months later he will be having his second (on July 2nd)…kinda crazy, huh?

….goodnight

#GoBeckett
#ODAAT