Heart of Beckett

UPDATE (11/25/13)

Just got back from two different doctor appointments today….and Beckett is doing GREAT!! This news is still hard to process at times. We are so very blessed and thankful for how far we’ve come. It has been a wildly challenging year, but so very rewarding.

If you haven’t noticed yet, I recently posted a new video of Beckett and his journey throughout this past year. It was truly sobering to watch, yet amazing none-the-less. I think both Leah and I have seen it a few times already and have cried each time. So, if you get the chance, check it out. (oh, and a big thanks to those who helped put it together….Logan, Keith and Melvin)

These past few weeks have been crazy for me. Within the last week or two, I’ve written 7 papers, and still have 4 more to go before Thanksgiving break (I should probably be working on that instead of doing this). But needless-to-say, it’s taken a lot of my time, and unfortunately it has been extra challenging to properly balance life. Leah has been very gracious and understanding of my time, but I will be looking forward to when work/school/family life finds some state of normalcy once again.

Also, please pray for Leah and Beckett as I will be out of the country for a few weeks in December. This is the definition of bittersweet. This trip is going to be fantastic (and is partially a requirement for my schooling), but it will undoubtably be difficult to be away from both Leah and Beckett. They need prayer, I need prayer…don’t we all? Christmas will be a blessed time this year of some much needed rest and memory-making family-time!

That’s about it for now. Don’t forget to vote for Beckett (see below), cause I think we only have until December 1st!

Vote for Beckett!
https://gerber.promo.eprize.com/photosearch/gallery?id=265400

Happy Thanksgiving Everyone!!

#GoBeckett
#ODAAT

If half my heart
could make yours whole,
I’d be repaying the gift
you’ve given me.

UPDATE (11/16/13)

Another week down. This week went by fast. You know those weeks where last Friday literally felt like yesterday? Not sure what to make of it, but what I do know is Beckett is doing well! I posted a picture yesterday of he, Leah and myself going out “on a date”. We had some gift cards to Olive Garden…so we “did it up nice!” 😉 At one point during the evening, I looked over at Leah and said, “Look at us…we’re a family.” Without even saying a word, I knew Leah was soaking it in as well. At a few points we had “that whimpering baby”, but also “neighbor table admirers”, a few people noticed his feeding tube, but you could tell that some people who even spoke with us had no idea what all he has been through. He’s such a strong and good little boy. He rarely “acts out”, and he just loves so affectionately. When it’s just Leah and I, he just reaches out both his arms as far as they can go to simply touch our faces, or grab our hands, or even reach out to be held (he’s doing that now). He’s recently learned how to wave, and it’s the most precious thing ever.

Beckett’s therapy is going well. Our therapist believes that she can see progress. Beckett is beginning to show strength in his core, and he’s been tolerating longer and longer stints of “tummy-time”.

We’ve officially established a bed-time (yes, he was getting away with staying up as late as he’d like until now). As the days go by, we are trying to establish more and more elements of normalcy, and he’s been acclimating to it all quite nicely.

Please continue to vote (see below)! 😉
Please continue to pray for healing and progress.
Please consider a Beckett wristband (if you want).
And please keep me (Jonny) in your thoughts and prayers as I finish up the semester. I actually end early this year at Thanksgiving because I’m leaving for a conferences in England shortly after Thanksgiving. Sooo, two things: please pray that I finish the semester strong (as I have what seems like a million papers and projects to finish before Thanksgiving), and please pray for Leah and Beckett while I’m gone. I’ve honestly never really been homesick before ever in my life (even as a child), but I think this may be my first experience with homesickness. I’m truly looking forward to this trip, and honestly…I’m dreading it at the same time. The closer it gets, the more my stomach churns. So anyway, that’s another thing to please keep in mind for us.

Thanks everyone! You all are amazing (I truly mean that from the bottom of my heart)!

Vote for Beckett!
https://gerber.promo.eprize.com/photosearch/gallery?id=265400

#GoBeckett
#ODAAT

Stylin’ once again…but this time on a date with Mom and Dad. Never done this before!

#PumpkinPatch

UPDATE (10/19/13)

Just a quick update. The “procedure” went really well yesterday. We gave Beckett some good ole fashion “drugs” he hasn’t had in a while, and needless to say, he was in his “happy place”. The procedure literally took less than 5 minutes. They are pleased with how everything looks, and like always, we will have additional follow up appointments.

That’s about it for now. Thank you for keeping us in mind and in your prayers. It was fairly surreal to be in an “outpatient” situation like that…but we certainly appreciated it.

Thanks everyone! One day at a time…

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

#GoBeckett
#ODAAT

UPDATE (10/17/13)

Please pray for Beckett tomorrow morning. We will be heading down to Riley Hospital in the morning to have Beckett’s J-Tube converted to a G-Tube. It shouldn’t be very invasive as it’s intended to be an outpatient procedure.

On a quick fun note, Beckett has slept the past few nights in his own room and in his own crib! I think it was a more substantial move for Momma (Leah), than Beckett….but so far so good!

Lastly, Beckett began some of his therapy! We are excited this is finally in motion, but we do have a long ways to go.

That’s about it for now. Thank you for your concern, love and prayer!!

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

#GoBeckett
#ODAAT

UPDATE (10/13/13)

There’s really not much to report…..but that’s kind of how we like it! 🙂

Beckett is doing very well. We STILL have yet to start his physical therapy (which is extremely disappointing), but we are simply trying to wait patiently and do all that we can for him ourselves until then. Cognitively, he appears to be very sharp; it’s quite encouraging (especially if you recall the probable brain damage from his massive cardiac arrest after his first surgery on January 2nd)! Physically, he’s a little ways behind, both sitting up and such in addition to him not knowing how to eat.

On that note, we had our follow up GI appointment a few weeks ago…..and unfortunately have yet to hear back from them. As of this Wednesday, it will have been 2 weeks. We are a little bummed about that as well, but are hoping that no news is good news and the plan that they are coming up with will be perfect for Beckett’s continual progress. But if I could be honest, it’s hard not to grow bitter when there is a lack of communication and/or we “feel” that Beckett’s progress is becoming less of a priority to them (out-of-sight-out-of-mind). I’m confident that is not the case, but it can be challenging to maintain a proper perspective and good attitude all the time.

However, with that being said, every day with our son is truly a reminder of how blessed we really are. As you know, and as we’ve learned, life is not guaranteed…neither is tomorrow. If Beckett wasn’t enough of a “wake-up-call” to that end, this past week was. Loosing Leah’s uncle John unexpectedly was challenging to process. A great man, who took his last step down the fairway of a golf course at a fund raiser event for a man with cancer. It really makes you think about what is promised, and what is not. I know that as I look over my screen right now, I’m looking at my alive and breathing son, I have a lot to be thankful for. But I also know he is not guaranteed me, nor I him for another day. My son is a living miracle, a defiant of death, and a testimony of something much greater than us. I’m humbled as I walked Beckett around Taylor University’s campus this weekend for homecoming, and the countless people coming up to me asking if this is Beckett (many who I didn’t even know), and sharing with him that they have been praying for him. Those are moments and situations I genuinely doubted at times would come. And, honestly, it’s not as if I deserved them….they are a gift. I think all to often we cling to some faulty sense of entitlement with way too many things. And for us Christians, we even do this with our salvation. How prideful can we be to think we “deserve” anything beyond hell. Life is a gift. Friendships are a gift. Husbands, wives, daughters, sons, UNCLES……are a gift. We must be good stewards of all these things, and I, thankfully, have a living/breathing testimony of this. I, along with you, should be thanking God each day for these gifts, taking every advantage of every opportunity. Now, I’m no radicalist, advocating for us all to go checking off items from our Bucket-List beginning tomorrow…but I’m assuming you get the point. With even everything me and my family have gone through, I even loose sight of this perspective on a consistent basis. Juggling everything I’m juggling right now, I find myself developing a bad attitude about minor things like grad school papers, finances, Beckett’s exhausting care…..but then realizing that these are minor in comparison to magnitude of blessings I live in and through each day of my life.

I think I’m rambling at this point…but thanks for at least hearing me out (it can be therapeutic for me every once and a while).

I will conclude with requesting continual prayer and support for Beckett’s progress. We are eager for his PT to start, but are also excited and fully expecting a good report from another doctor’s appointment we will be having tomorrow. I won’t be able to go with Leah (…again), but I will be eager to find out how well it goes.

Also, please continue to pray for Leah’s family during this time of loss. I’m sure most of you either fully understand or can imagine what it is like to suddenly loose a loved one. They are a strong family, but this has been a tough year for many of us.

Thank you!!

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

#GoBeckett
#ODAAT

O.H……..
Sporting the scarlet and gray today! Look how happy he is.

#Stylin for my first Taylor Football Tailgating Party.
#GoBeckett #GoTrojans!