I’m not really in the place to write tonight… sorry. Sometimes, the writing is almost therapeutic, other times, somewhat laborious. Tonight –it is very difficult...
so let me apologize in advance if something here finds you offended.
I am not sure how I feel sometimes ,… upset, scared, numb, angry, frustrated, depressed, overjoyed, thankful,
peaceful, assured, cautious, … so many different emotions come with this “roller coaster” as they call it.
The day began wrong. After such a great day yesterday, … Kelly getting to hold Kyle for the first time, etc… his blood gases got all weird. His nurses thought it was probably because of so much assessment during the evening, etc, but… the more they checked them, the worse his CO2 (carbon dioxide) and pH were off. All night things kept seemingly getting worse.
Today, when we arrived at the hospital, after spending time with the boys and resting a little, we walked into not being allowed back to Kyle due to an echocardiogram.
This was strange to us, because they had just done one the day before to check into Kyle’s PDA valve, …
and it just seemed weird that they were doing another echo.
We were told on the way down to the hospital via phone that the doctor would talk to us when we got there. We assumed (with cautious nervousness) that it would be about his PDA issue, but never saw this one coming…
After the echo, we met with one of Kyle’s nurse practitioners, Kelly (who is great)…
She proceeded to let us know they had found something on the previous echo they wanted to get a better look at. There was suspicion of a blood clot in Kyle’s heart.
Sure enough, a few hours later, that suspicion was confirmed, so, now we had a whole new critical problem to address. You can’t just give him heprin or cumadin (typical blood thinner medicines) b/c then you run the risk of affecting the brain bleeds for the worse.
The result? A FFP (fresh frozen plasma) drip. I have NO idea what this will do for him,
But I know this is our course of action.
Pray that this works to decrease or delete the clot, that it will go away completely.
Pray for protection for Kyle.
Pray there are no other clots anywhere else. (they scanned his belly for more tonight)
Pray that the brain bleeds have subsided and that there was no damage.
Pray for Kyle’s PDA to close again (yes, we found out it had re-opened)
Pray for Kyle’s lungs to grow and be healthier.
Pray for Kyle to be able to balance out his numbers better – getting rid of CO2.
Pray asking God to protect Kyle from NEC.
Pray that Kyle has a better time on the ventilator and it doesn’t damage his lungs further.
Pray that Kyle’s feedings continue to go well and he digests all his food.
Pray that Kyle can rest and grow.
Pray for SUPERNATURAL HEALING and Believe God for it.
Pray for Kelly and me, as our faith is tested, as we sometimes question God, and as we wrestle
with God over why…
I wanted to title this blog
“When God’s Glory Costs too much…”
But, truthfully,… Luke 9:23 talks about true discipleship.
Deny Self is number one in following Jesus.
I THOUGHT I had a grasp for this one, but it goes WAY deeper than simply denying American consumerism or even church consumerism (refer to Rick Warren day one purpose driven life… “It is not about me”…)
Denying self means looking into the incubator for me…
staring at my precious little guy,
watching him work to live in an environment he isn’t suppose to be in yet,
seeing the struggle,… day by day, crisis by crisis, moment by moment… small victories to celebrate, setbacks that knock us down…
Denying Self for me now means having to learn to pray
as Jesus prayed,…
Asking for what I truly want, but being satisfied in the glory of His will,…
No matter what.
Denying self for me is becoming the person who can still say I am more than happy in Christ, no matter if my world is falling down around me… God is still right, and God is still good, even when it hurts so much to feel like God has turned his back on me.
I am begging everyday for Him to heal Kyle…
one step at a time even, … but I feel like
sometimes, instead, there is a learning I have to do,…
a lesson God has for me, and Kyle is the teacher that
God is using,… I can’t stand the thought, of Kyle bearing the brunt of my object lesson,… but God’s done it before,…
Hello Abraham, Hello Job.
Not to equate myself with these heroes of the faith,… but excuse me for a second while I peel the curtains back to show you the darkest moments of my soul.
So see, I am contemplating the cost of discipleship in this area of my life.
I am contemplating the Glory of God, and it’s primary value in my life when it comes to
those nearest and dearest to my soul. I am deeply sitting down inside of myself trying to
find the good in these moments knowing God works all things for the good… He began a good work, He will be faithful to … Faithful is He who calls us, and He will bring it to pass… etc etc etc… I am claiming the scriptures, I am believing TRUTH about healing and God’s report, etc… I just need to see God move in BIG ways.
Don’t get philosophically theological on me here with a bunch of cliché’s.
Let me stew in the fact that WE NEED GOD to do something EXTRAordinary
Here. We NEED Jehovah Rapha intervention – We thank God for the small moments, but WE ASK for the BIG. With a Big God, comes Big things. I am asking for it, begging for it, and expecting it.
My Soul waits for the Lord. (ps. 33)
Until then, … this sucks. (forgive the lack of political correctness)
Funny thing,… I still care about the glory of God…
it is just asking everything of me.
Now I think I am understanding the words of Jesus
more and more.
Kyle's NICU Story in Pictures
12 comments:
WOW! Thank you for walking through this fire in such a way that those of us on the outside of your "furnace" can see the "fourth man" clearly walking with you. I am praying for your family and your precious little lion!
Thank you John for your honesty!
I sit here and weep and cry out to God to... I pray for all of the things you listed and then my mind goes blank to just ask God to be God and have His will in this situation.
I (and many others I am sure) have been changed these last two plus weeks.... I love your little guy!
John, Kelly -
My heart is aching for you guys. How I wish I had a magic wand to make everything ok! God knows you're wrestling with so many emotions: anger, despair, etc. Sometimes I hate the fact that I can't know His plans until they unfold in real time. That's the control freak in me... but I'm slowly (SLOWLY) learning to unload that need to be in control in favor of letting Him be my Leader... my Savior... my God. I pray for healing, for peace, for strength.
God, please grant this family every extra measure of grace, strength, and peace that You can. My heart breaks for them, and I know You don't glory in their pain. Lord, we praise You as the divine Healer and Physician. Blessed is Your name even in the desert place. Help us to remember that You're sovereign even in these times when we can't see it for the circumstances surrounding us. Lord, please heal Kyle. Restore his body to full health and develop those parts of his body that need more time. We are praying for a miracle of Biblical proportions, and we know You can! Thank You for hearing us, and for being our Father... holding us even as You hold Kyle right now. We love You, honor You, and praise Your name. We pray this in Jesus' name and trust in His power - Amen.
In His Grip,
josh and kristi rhodes
John and Kelly
I just wanted to say that I have kept up with your updates for some time now and I am praying for you all. I wanted to let you know that although you all going through something huge you have still been such an inspiration to me. I have never seen so much Faith come from people in your situation and it is so uplifting to see the way that you and your family are embracing this. You all are so very strong and I thank you for staying true to your Faith even in times of hardship. I have seen so many people blame God instead of trusting him in times like these so once again Thank You! I will continue to pray for you and your family.
Love in Christ,
Shanna Matthews
Morristown,TN.
Father God-
I pray that you will supernaturally heal Kyle. We know you are the GREAT physician and you are sovereign. I pray right now You will stop the brain bleeds and that they will reabsorb quickly with no long term effects to the brain. I pray you will remove the blood cot in his heart and I pray you will place your mighty hand over the PDA valve, that it will remain closed. Give the doctors and nurses wisdom and discernment to know what to do in each situation that arises. I pray that just as Kyle was safe, secure and doing well in Kelly's arms, that You will allow Kyle to feel Your arms around him and I pray that peace will wash over him like a river so that he can rest and grow. We know that you will get the glory for all that is done in little Kyle's life. I pray you will move in such a MIGHTY way there is no other way to explain his healing that YOU father. Give Kelly & John the perserverance, endurance, strength, peace and comfort they need for each moment. I pray that through the prayers and intercession of so many their faith will be strengthened in times when it is waining. I love you!!
In Christ's HOLY & precious name,
Amen
J&K - we are praying w/o ceasing!!
Love,
Josh & Stacy
It's okay to question things in the search for truth. We as humans have a need to understand. To have faith in the absence of understanding is a concept that is difficult to grasp and even more difficult to maintain. You, Kelly, Jadon, Jack and Kyle are special. I pray for you to have understanding. Kyle is in Gods hands and for his purposes as are you. I Love you guys.
Dearest John & Kelly,
The verses I am praying for you today,
"Listen to me...you whom I have upheld since you were conceived, and have carried since your birth. Even to your old age and gray hairs---I AM HE. I am He who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you." Isaiah 46:3-4
"But now, this is what the Lord says---FEAR NOT, for I have redeemed you. I have summoned you BY NAME and you are MINE! When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned. The flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior." Isaiah 43:1-3
Love and prayers,
Amy (Payne) Busti and Family
John and Kelly,
You guys don't know me but I found you through a friend. Kyle's story touched my heart because I was a two-pound preemie 30 something years ago. The stories you tell are the same ones my parents have told me my whole life.
I have been studying Jesus' miracles in John with a group of international ladies. We have been amazed at the fact that in each instance, Jesus says that the problem, illness or defect was not caused for any purpose except to glorify God. Even Lazarus' death and resurrection was for the sole purpose to glorify God.
I pray that Kyle will be raised up in new life just as Lazarus was and many will put their faith in Jesus as they did at Lazarus' resurrection.
God, may you be glorified in Kyle's life. Strengthen his little body to praise and serve you. Holy Spirit be the air he breathes and the beat of his heart. When he is weak You are strong. Jehovah Rapha fight for Kyle's healing! Please strengthen this precious family's faith as we lift up this precious one to you. As they walk through this valley I pray they would fear no evil for You strengthen them. Let us see with Your eyes and love with Your heart as You are daily glorified. Amen.
I will be following Kyle's progress.
In Christ,
Lisa Smith
John, You can do this, or He wouldn't have allowed it to happen. God can do ANYTHING! If He doesn't, it is only because He is doing something else; maybe something we can't see. You and Kelly are His; He will never leave you, nor forsake you. Last night at church, our band played one of your songs, "In You." I was reminded to pray for Kyle again when I saw the note in the corner that it was a John Sherrill song. We stopped and I shared your story with the church and we prayed for you all. Be encouraged, John.
Yet if anyone suffers as a Christian, let him not be ashamed, but let him glorify God in that name.
—1 Peter 4:12-14, 16
I found this today and thought it fit. Your passion is God-given. You question and wonder because He made you that way. Just hold on. Good things are coming. The miracle that will be Kyle will be even more extraordinary.
Praying still. Won't stop.
John & Kelly,
Thanks for your honesty. It's easy for one to live through something like this and think that you always have to put on a happy face. You're right: this does suck. Big time. And I want to affirm your honesty. Don't be afraid to write how you're feeling, even if you're mad at God. He's big enough to handle it.
I was in a Sunday school class earlier late last year at WoodsEdge. The subject was suffering. There was quite a debate for a few moments about whether God allows bad things to happen to us to test us or if He allows bad things to happen to discipline us because we need it. Marsha Tribe was there that morning, and she said one of the wisest, most profound things I've heard in a long time. She said it doesn't matter why God allows bad things to happen to us, because the end result is the same: we draw closer to God and become more like Him.
And I agree with you - God is good, all the time. Or to add a modern twist to it: life sucks, but God is good. People have sent lots of excellent Scripture to encourage you. I want to add a quote from C.S. Lewis' Chronicles of Narnia series. Several times throughout the books, it is asked of Aslan, when some learn he is a lion: " 'Is he safe?' " The answer is always, " 'No, he's not safe. But he is good.' "
I've written some not so fun things, but I want to make sure you hear my emphasis about the goodness of God. Allow yourself to be feel hurt. At the same time, keep your eyes on our good God.
still praying....... and begging God to heal Kyle in a way that only He can!
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