Whelp, here I am again…in a hospital…just me and Beckett. Leah had to work again this weekend. In fact, we’ve been forewarned by her job that she cannot have any more days off. :-\ They’ve been really gracious throughout this entire journey, but I guess they have to draw-the-line eventually.
As I walked into Beckett’s room this morning, he was sleeping! That’s awesome! He hasn’t been sleeping the greatest lately. However, as I walked in I noticed that his poor ear was all bent over from the cannula and his arm-splint (helping to keep his IV in his arm) had slid off. So I went and found his nurse. She didn’t mean to, but in fixing those few issues, she woke him up. Incidentally, he then stayed awake….what seemed like all day until he had a horrible meltdown in the late afternoon. We don’t like these kind of meltdowns because he literally wore himself out (which is always scary). He did hold his sats quite well during the meltdown, which inspired (after my subtle hints… #inception ;-)) to start weaning him off some of his oxygen support machines. I think that has been one of my struggles this go-around. My attitude. I can keep my composure, but I feel like I’ve had a much shorter fuse since we re-arrived here at Riley. I think it stems from being back so soon, it spiraling into what it has, the perceived rate-of-progress, the lack of sleep….it’s just all very frustrating. I’ve caught myself telling Leah (certainly out of weakness) that “I’m done with this!” Yeah, embarrassing, huh? I think Leah initially took it as me “quitting”, which is definitely not what I meant. I was merely expressing my desire for this to be done with so we can just go home and try to be a “normal family”, or at the very least, live life outside of a hospital over an hour from our house (but however you “slice” it, it still doesn’t sound very good, does it?). I spent some amplle time late last night, and even this morning wrestling with God on “motives” and “attitude”. I’m certainly not perfect, and at least I know it. But I can struggle with pride and putting myself first. I’ve had to actively accept God’s grace over my life and my sin once again. This is a daily process for me, and is still fitting of the mantra “one day at a time”.
As I’m wrestling with patience, pride, motives and idolatry through this particular leg of our journey, I invite you to do the same. Why do you do the nice things you do? What are your motives? Who do you truly worship? Look deep. Is your pursuit of pleasure, personal satisfaction and joy surprisingly first in your life? Sit back, talk it through with God, and lastly…fully bask in his grace. It’s a beautiful thing. Everyday I try to better understand his grace, and what’s awesome is that everyday I have so much more to learn. Lamentations 3:22-23 says, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”
We hope to be home soon….but until then, we ask for prayer to stay present in our current situation and trust that God is still in control and has this (and has US) right where we need to be.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
So I have to say how good it is that you and Leah put yourselves ‘out there’ with how you’re feeling so honestly. It helps others to know that even though we love the Lord and fully rely on Him, we’re human and have human emotions. The awesome thing about that is God understands and loves us. Keep hanging in there, roll with the ups and downs and prayers will continue to be fervently lifted up for you all. Go Beckett, Jonny and Leah!
My heart aches for you and Leah and all you have and are going through. This is a very tough journey, one that the two of you have been handling amazingly well. Being fed up and tired of it all is normal and healthy for you to feel. If you didn’t come to this place then God would not be able to stretch and grow you. When one comes to the end of patience then God can work with you and remove the dross and build your spirit in His. I have been there and what I have learned is there is no better purpose in life then serving Jesus Christ. You asked what drives our motives. Jesus drives me. It is because of what He did on that cross, the suffering for my sins, that pushes and encourages me to step where I have always feared, into the sight of man.
Praying for your and Leah for strength in Him to make it through this very difficult time and prayers of healing for Beckett so, when the time is right, he will come home and stay home.