Happy Valentines Day!
Love, Beckett
Heart of Beckett
The Journey of Beckett Jude Rupp
Category Archives: Jonny
February 12, 2013
#BitterSweet #Technology
February 11, 2013
Well, I’m home safe-n-sound…but “wifeless”. I just spoke with Leah ‘Whiteley’ Rupp and she has a pretty nasty headache. She’s just going to go to bed tonight and do an Update for everyone sometime tomorrow morning(ish). Beckett is doing well. Lets hope and pray that we all have a restful and peaceful night! Goodnight.
— in Upland.
February 11, 2013
UPDATE (2/11/13)
I’ve been playing a ‘mean joke’ on Leah lately. Honestly, its not a ‘joke’, but she gets upset with me because it makes her cry each time. Let me explain: we begin each morning together (when I am able to be down here with them) doing devotions. Our devotions involve the reading of some scripture together, we read the devotional ‘Jesus Calling’, and my new addition of Leah’s journal entry 1 month ago from today’s date. This new addendum inevitably evokes emotion for the both of us. It’s been a great reminder, though, of just how far we’ve come already.
Beckett is doing well. He has busy days of therapy, adjustments of medications, adjustments of VapoTherm settings, in addition to quality time with us (the favorite part of his day! ;-)).
I am, unfortunately, heading back home later this evening for class in the morning. You would think that by now maybe this would be getting a little easier……nope. Just as hard each time, and I’m pretty sure I’ve cried each time. But this is our reality, and we will approach it one day at a time. Please pray for Leah, however, as she will be here by herself for the next few days.
Thanks everyone for following so closely. We certainly ‘feel the love’! Stay tuned for further updates to come from Leah these next few days.
I’ve been playing a ‘mean joke’ on Leah lately. Honestly, its not a ‘joke’, but she gets upset with me because it makes her cry each time. Let me explain: we begin each morning together (when I am able to be down here with them) doing devotions. Our devotions involve the reading of some scripture together, we read the devotional ‘Jesus Calling’, and my new addition of Leah’s journal entry 1 month ago from today’s date. This new addendum inevitably evokes emotion for the both of us. It’s been a great reminder, though, of just how far we’ve come already.
Beckett is doing well. He has busy days of therapy, adjustments of medications, adjustments of VapoTherm settings, in addition to quality time with us (the favorite part of his day! ;-)).
I am, unfortunately, heading back home later this evening for class in the morning. You would think that by now maybe this would be getting a little easier……nope. Just as hard each time, and I’m pretty sure I’ve cried each time. But this is our reality, and we will approach it one day at a time. Please pray for Leah, however, as she will be here by herself for the next few days.
Thanks everyone for following so closely. We certainly ‘feel the love’! Stay tuned for further updates to come from Leah these next few days.
— with Leah ‘Whiteley’ Rupp at St Vincent Womans Hospital.
February 10, 2013
UPDATE (2/10/13)
Last night we didn’t leave the hospital until nearly midnight. Beckett was doing ok, but he seemed to be breathing fairly quickly. I decided to ask the nurse about it, and she decided to have the doctor look at it. They didagree that it was certainly too fast, but that they will monitor it. As a result, they ordered another X-Ray for the morning to see if he was accumulating any additional fluid around his lungs.
The Good: The pleural affusion (the extra fluid in his chest) has decreased.
The Bad: He has a little bit of fluid on his lungs.
They are going to increase his Lasix (which is a diuretic and pulls of the fluid). This isn’t really a step backwards or anything, but rather an update of his progress.
As mentioned before, Leah is on maternity leave. Though it is unfortunately unpaid, we have received word that they have extended her leave. We aren’t exactly sure for how much longer, nor do we want to take advantage of their grace. Moreover, our health insurance deductible is paid through her paycheck. So we are working through those details….but we’d like to report this as a praise overall. Though there are some financial hiccups in there, Leah is blessed to work for great and understanding employers.
Lastly, I wanted to take a moment and flesh out my theology on prayer. I mentioned in an earlier post that this, among many other things, was something I couldn’t shake from my mind. How then should we pray? Obviously the Bible speaks pretty clearly on prayer, especially with Jesus instructing us how exactly to do it in Matthew 6. How does this translate to my life. Here is what I’ve come up with. Though I strongly believe I have not pioneered some new way of praying, I also haven’t stolen this from anyone other than what I see in scripture and how best I know how to practically apply it to my life.
Through this journey my prayer life, along with many of yours, has grown (one of many blessings from all this). Questions arise like:
Why do we pray?
or
Why do I ask for others to pray?
I don’t believe that The Lord waits until he receives a particular number of people prayer before he’ll answer in our favor. It’s not like we need 750 people praying for Beckett for him to be healed, and if we only hit 749, God won’t heal our son. So again, I asked…how does it work? That’s a question I don’t want to attempt to answer in this post. But I will explain HOW I pray (for those of you still reading this post).
I don’t believe it is ‘wrong’ to request and ask the desires of our heart. However, I’m learning how finite I am, and how great He is! Example in scripture of The Lord working out amazing plans through difficult circumstances:
1) Joseph. Sold into slavery. Imprisoned. Yet became Second in command next to Pharaoh.
2) I’ve referenced Job before and
3) Abraham with his son Isaac.
God has already used Beckett in ways that we could never have imagined, yet in my weakness I feel as if I could somehow have had a say in all this before it happened over a month ago, (even knowing what I know now) I would still decline to go through all this agonizing pain once again. So I slowly begin to learn to pray to align my desires to the Lord’s will rather than ask for the Lord’s will to align with my desires. With that being said, I’ll try to wrap up now.
1) I pray for the desires of my heart (‘Please continue to heal my son, God’), but as an act of transparency, sincerity and honesty of my feelings and desires.
2) Next I pray for the Lord’s will to be done (Matthew 6:10) as an act of trust and respect to my Lord.
3) Lastly, I ask for The Lord to work in my heart for peace of whatever the outcome may be….his good, pleasing and perfect will (Romans 12:2). This is clearly the most challenging prayer, but evokes sanctification and a necessary step in my prayer life.
I hope that helps or was of some value to you. This mindset has really helped me pray what I believe is a pleasing, sincerely and effective prayer.
Love you all (and I mean that, even if we’ve never met). Thank you for praying for my son. We’ve come so far, and I believe the Lord has great plans for my son’s life.
Oh, and if you get the chance, check out Beckett’s blog to find ways to get involved. The Benefit Concert will be awesome, and I’m so thankful to everyone who has helped make this happen. We are forever grateful to you all!
https://heartofbeckett.com/
Last night we didn’t leave the hospital until nearly midnight. Beckett was doing ok, but he seemed to be breathing fairly quickly. I decided to ask the nurse about it, and she decided to have the doctor look at it. They didagree that it was certainly too fast, but that they will monitor it. As a result, they ordered another X-Ray for the morning to see if he was accumulating any additional fluid around his lungs.
The Good: The pleural affusion (the extra fluid in his chest) has decreased.
The Bad: He has a little bit of fluid on his lungs.
They are going to increase his Lasix (which is a diuretic and pulls of the fluid). This isn’t really a step backwards or anything, but rather an update of his progress.
As mentioned before, Leah is on maternity leave. Though it is unfortunately unpaid, we have received word that they have extended her leave. We aren’t exactly sure for how much longer, nor do we want to take advantage of their grace. Moreover, our health insurance deductible is paid through her paycheck. So we are working through those details….but we’d like to report this as a praise overall. Though there are some financial hiccups in there, Leah is blessed to work for great and understanding employers.
Lastly, I wanted to take a moment and flesh out my theology on prayer. I mentioned in an earlier post that this, among many other things, was something I couldn’t shake from my mind. How then should we pray? Obviously the Bible speaks pretty clearly on prayer, especially with Jesus instructing us how exactly to do it in Matthew 6. How does this translate to my life. Here is what I’ve come up with. Though I strongly believe I have not pioneered some new way of praying, I also haven’t stolen this from anyone other than what I see in scripture and how best I know how to practically apply it to my life.
Through this journey my prayer life, along with many of yours, has grown (one of many blessings from all this). Questions arise like:
Why do we pray?
or
Why do I ask for others to pray?
I don’t believe that The Lord waits until he receives a particular number of people prayer before he’ll answer in our favor. It’s not like we need 750 people praying for Beckett for him to be healed, and if we only hit 749, God won’t heal our son. So again, I asked…how does it work? That’s a question I don’t want to attempt to answer in this post. But I will explain HOW I pray (for those of you still reading this post).
I don’t believe it is ‘wrong’ to request and ask the desires of our heart. However, I’m learning how finite I am, and how great He is! Example in scripture of The Lord working out amazing plans through difficult circumstances:
1) Joseph. Sold into slavery. Imprisoned. Yet became Second in command next to Pharaoh.
2) I’ve referenced Job before and
3) Abraham with his son Isaac.
God has already used Beckett in ways that we could never have imagined, yet in my weakness I feel as if I could somehow have had a say in all this before it happened over a month ago, (even knowing what I know now) I would still decline to go through all this agonizing pain once again. So I slowly begin to learn to pray to align my desires to the Lord’s will rather than ask for the Lord’s will to align with my desires. With that being said, I’ll try to wrap up now.
1) I pray for the desires of my heart (‘Please continue to heal my son, God’), but as an act of transparency, sincerity and honesty of my feelings and desires.
2) Next I pray for the Lord’s will to be done (Matthew 6:10) as an act of trust and respect to my Lord.
3) Lastly, I ask for The Lord to work in my heart for peace of whatever the outcome may be….his good, pleasing and perfect will (Romans 12:2). This is clearly the most challenging prayer, but evokes sanctification and a necessary step in my prayer life.
I hope that helps or was of some value to you. This mindset has really helped me pray what I believe is a pleasing, sincerely and effective prayer.
Love you all (and I mean that, even if we’ve never met). Thank you for praying for my son. We’ve come so far, and I believe the Lord has great plans for my son’s life.
Oh, and if you get the chance, check out Beckett’s blog to find ways to get involved. The Benefit Concert will be awesome, and I’m so thankful to everyone who has helped make this happen. We are forever grateful to you all!
https://heartofbeckett.com/
February 9, 2013
just the cutest little thing ever….geesh — with Leah ‘Whiteley’ Rupp at St Vincent Womans Hospital.
February 9, 2013
Psalm 139:13
For you created my inmost being; you knit me together in my mother’s womb.
February 9, 2013
UPDATE (2/9/13)
-children are a gift-
We are never guaranteed our children for a particular length of time. Some children are blessed to outlive their parents, some unfortunately do not. Though we are so blessed to still have Beckett to this day, we have certainly experienced dark moments of death knocking at the door of our son’s life. Life is fragile, thankfully we are learning this lesson at the beginning of our son’s life. Similar to how much more love I have ‘felt’ or experienced for my son through this journey, his life is all the more valued. Those of you with children (whether infant, teenager, adult, etc), their life and health is not guaranteed. Value and cherish one another, your family, your friends, and especially your children.
Psalm 127:3
Children are a gift from the Lord; they are a reward from him.
Beckett is doing well (I begin my Updates with those lines to help dilute anxiety). He was weighed again last night and is now 7lbs 3.5oz. This is great news! Though we cling to the ‘positive’, we were reminded from an experienced nurse that babies with Beckett’s condition need to be assessed one day at a time. Unfortunately ‘things’ can change quickly, but I guess we are no stranger to that. This reminder is what inspired the first half of this update. Beckett is our gift, we commit to enjoy, celebrating and appreciating each day we are blessed with him! I charge you to do the same.
Jeremiah 33:6
Behold, I will bring to it health and healing, and I will heal them and reveal to them abundance of prosperity and security.
February 8, 2013
UPDATE (2/8/13)
-Another Day and Another Blessing-
Beckett has had an “eventful” day. I know we typically yearn and plead for “uneventful” days, but today wasn’t necessarily the antithesis of that. Beckett’s day began with his VapoTherm being turned down again (another step closer to “independence”), he had his first PT/OT session since being at the PICU, and I think he slayed it! 😉 He usually has always hated to be touched or moved, but it almost looked like he enjoyed the therapy, so it was quite amusing to watch. Unfortunately an hour or two later he broke into hysterics. After a while of not settling down, they made the decision to give him a “rescue dose” of morphine. Fortunately (yet unfortunately), it worked quite well. They are thinking that the therapy may have had a residual effect that agitated him afterwards. I mean, he has had 8 operations already in his short lil life…I guess it’s understandable. 🙂 It’s so calming, though, to watch him lay there with what appears to be complete peace and comfort, especially with all that he’s gone through. But the flip-side of that is that we want to continue to wean him off of his dependency of these narcotics. It’s a fine line, but in the grand scheme of things he’s doing “quite well”, or at least “much better”, than yesterday, or even the day before that.
On a lighter note, Beckett is back to his old tricks of stealing women’s hearts. It hasn’t taken long for him to make his presence known around here, and he doesn’t even have a voice yet. It’s so funny to watch the nurses genuinely go crazy over him. His eye’s will snatch your heart, and he won’t give it back!
I wrote a list yesterday of everything that was on my mind, thinking this may help bring clarity or possibly an opportunity to help organize my thoughts. Needless to say…It was daunting. I couldn’t believe everything I was thinking of from: our Christmas Decorations still being up, to a FAFSA application for my schooling I need to fill out, but first I need to do my Taxes for 2012, Medicaid for Beckett (our medical bills have reached the millions by now), Everyday Bills, my Theology on Prayer (…yeah), School Assignments, etc. etc….and that hardly scratches the surface. However, and yet through all of this, the more I’ve learned, the more I realize how little I know….and the more I appreciate my salvation through embracing my depravity. I could go on-and-on…and in fact, I just deleted a large portion of this update with intent to value your time as a partner in this journey. As challenging as this process as been, it’s amazing to find peace through that which we were taught to be our “constant”: God’s word, our prayer life, one another (the body). But even if all that was taken away, and as we have seen from Job loosing everything, from Abraham relinquishing his son, we see from Paul in 1 Corinthians 10:31 “So whether you eat or drink or whatever you do, do it all for the glory of God.”, or Philippians 4:11 to be content in our circumstances, or Romans 8:28 that ALL things work out to the glory of God. I have to ask myself, do I really believe that? And I believe that I do. There are just times when it is more difficult. I know I’m not saying anything all that profound, and I believe this is my cue to transition from an “Update” to my “Personal Journal”…but God is Good, all the time! And though life isn’t necessarily always easy, it’s also not always hard. And again, whether we align religiously, theologically or not…I am flattered and so grateful for your support. Thank you all! Beckett will come home! I believe God can, He will, and even if He doesn’t…..To God be the Glory!
— with Leah ‘Whiteley’ Rupp at St. Vincent Women’s Hospital.
February 6, 2013
Feeling the love from our #Upland family! Thanks everyone for the support. Obviously don’t feel obliged to participate, but tying a Blue Ribbon in front of your houses in support of Beckett was such a thoughtful idea and has been so amazing and humbling to see.
…and to help with the awkward thought ‘when would/should we take it down?’, maybe we can hold on until Beckett comes home from the Hospital (hopefully within a month or so).
Thanks again everyone…this is so cool!!
Heart of Beckett 