Tuesday, April 17, 2012

The subtleties of Satan and the Victory of our God (4/17)


This week has been uneventful for the most part, or rather just more of the same, blue spell, stimulate Thatcher to breath and watch him struggle for breath, and then relax back into his shallow quick breathing that allows him to get what he needs, at least for a time.  There have been really no test results, no changes in medicine, no real breakthroughs in terms of what to do next.  What we thought was going to be a hectic week of quick decisions and change turned into a very long week, that was hectic in its own way, but extremely slow at the same time.  The days and nights at this point have sort of melted into one, and honestly who really knows what day of the week it is anymore, it has become our practice to take it breath by breath, the hours seem to drag on, but pass by in a blur when we try to look back at them and remember what happened when.  All of this to say that this has been a difficult week in ways that we have not experienced before.

Satan has been on the attack in very subtle ways, planting questions where there had been none before, creeping doubts into our minds, even bringing tension among us, not allowing us to see eye to eye, essentially disturbing the peace that we have been experiencing, disrupting and getting in the way of our experiencing God.  Slowly, he seemed to creep in.  Honestly, it's hard to say when it began, but over the course of the week the questions and doubts just kept coming.  For whatever reason we began questioning what exactly the promise is that I'm even holding on to.  This question even stems from the story that we read him every night.  We read Thatcher the story of Caleb and the other 11 spies spying out the land of Canaan, and at the beginning of the story (numbers 13 and 14), the promise is clearly stated, that God has already promised the land of Canaan to the Isrealites, and we always point out, there's the promise baby boy.  And somehow the question popped into our heads and haven't been able to shake it.  What promise are you holding on to?  What promise do you have for the future?  The Isrealites had to face strong nations and mountianous issues and Caleb had faith and he held onto the promise of God already laid before him, but what promise do we have before us?  This really began to eat away at us as we let it fester and grow until it eroded our peace and our joy.  Our attitudes became selfish and we began to question if there was something more that we could be doing, or even something that we had done in the past to cause Thatcher to have to endure this.  Our prayers became selfish, and forced.  We began to pray that God would do exactly what we wanted.  There is a passage in Isaiah 58 that speaks about fasting, and the first several verses are basically how not to fast.  It talks about it being a ritual, sort of a going through the motions type of activity, and in verse 3 it says "Behold, on the day of your fast you find your desire".  For whatever reason, that hit home, and helped it click that we were beginning to go through the motions, that we were at that point praying for things that we wanted and not relying on what God has in store for us and our family.  This past weekend, after that verse awakened me a little bit, God has put it on our hearts that we need to "follow Him fully" just as Caleb did.  God used the very same story to bring us back to Him that Satan used to lead us astray.  At the end of the story, God says that Caleb will get to go into the land of Canaan and his descendants will take possession of it as he has had a different spirit and has "followed Him fully".  That part, following fully, really weighed heavy on us.  So our prayer began to be that God would reveal what that looks like for us, how are we not following fully the will of God, how are we not seeking his face?  And it was a gentle nudge of the Holy Spirit as we were pointed to the story in Mark 9 of the boy being set free from from a demon that caused him to seize and his father proclaiming, "I do believe, help my unbelief!".  "Help my unbelief", that became our prayer.  We still am doubting, we are still questioning, and this prayer turned it from asking those questions and dwelling on those doubts to saying "Lord, help my unbelief!"  I need your help, because I do believe You are able, and I do believe you are in control, but I still question and doubt at times... Help my unbelief, God!  Then the Holy Spirit began saying: trust Me.  The question that you asked before, about what promise are you holding onto?  Well, you are holding on to the promise that I am the same yesterday, today, and forever.  I am the Lord your God, and I go before you now, steady your heart and mind, take heart, and trust in my lovingkindness, trust in my strength, trust in my plan.  I am holding Thatcher... you've seen this, and you know this... do not doubt any more.  Give me control.  I love you and am here for you.  And this became more than a nudge by the end of the weekend and it hit me of what I am still holding onto.  Our prayers have been for the outcome that we want.  We have refused to acknowledge the possibility of God answering our prayers of healing by something other than complete healing here on earth.  We have refused to acknowledge it, because we don't think that we will be able to praise Him if that is His answer.  If that is the future that is before us, we're not sure how to handle that... the good news is, God is the same yesterday, today and tomorrow.  He will be with us, so we will praise God, we will praise Him for the miracles that have already happened in Thatcher's life, we will praise Him for the way that He has used Thatcher to bring glory to the kingdom of God.  We will praise Him, because regardless of our circumstances, we have to, God is worthy to be praised.  Always.  Every second of every day.  We proclaim that today, our God is victorious over Satan, over all forces of evil, over death, over sickness, over every obstacle our God is victorious.  Our God is powerful, his voice can strip forests bare, his presence shakes the earth, He causes mountains to quake, and the seas to roar, He can dry up oceans, and bring about floods.  Our God is our shelter and our shield, our stronghold and refuge.  Our God loves us, and hears our prayers.  Our God is everlasting, and is ever victorious.

Lord, we thank you for who you are.  We could never understand all that you are, but we want to spend a lifetime trying to figure it out, and God, we want to spend a lifetime teaching Thatcher everything we know about who you are.  We want to share stories with Him of how you have moved in my life, in our lives, in our church, in our city, and in our world today.  We want to read him the story of Caleb so many times that we have it memorized forward and backward.  We want to read your word with him, we want to sing your praises with him.  But we don't want you to simply provide us what we ask.  We don't want to pray and expect what we ask to be done.  We want to pray, believing that you are able to provide our desires, but trusting that you will provide for our good, and for your glory.  We desire your will be done.  We need your will to be done.  God we trust you, we love you, and we praise you.  Be glorified, and be lifted high.

Now, onto what "updates" we have from the week.  It seems his phenibarb has leveled out, at least for the time being.  No, it hasn't stopped Thatcher from seizing, but the neurology team wanted his level between 50-60, and for this past week it has set right around 54.  We, of course, are still praying for God to cast out the seizures, but are satisfied that the doctors are no longer chasing a level and his respiratory level seems to not be suppressed.  Praise the Lord that, at least for the time being, we are not chasing an invisible magic number.  A couple of tests that were sent out before, the hypothyroidism and 2 out of the 3 genetics, came back clear.  Our doctor agreed to consult with ENT (ear, nose, and throat team) to have them come do a flex video endoscope.  The scope showed that Thatcher has laryngomalacia, (the opening of his larynx (epiglottis) is floppy so when he tries to take a breath it collapses on itself).  It also showed that his larynx is extremely swollen, so much so he could not see Thatcher's vocal folds at all (they are housed in the larynx, or voice box).  It turns out our sweet baby boy has pretty bad reflux, mostly 'silent' meaning you don't often see spit up but it's constantly going up and down the back of his throat causing extreme irritation to his already fragile throat.  One huge praise is that the ENT said Thatcher's muscle tone looked fairly normal.  Considering his neurological issues, the ENT expected to see the muscle tone of someone who had a stroke, but his looked fine.  This is HUGE because people coming in trying to guess what could be causing his stridors have assumed because he has neurological issues he just has bad muscle tone and there is nothing to be done for that. Thatcher was put on prevacid and we were told we should see a difference in a couple of weeks.  The ENT team thinks Thatcher's stridors are 3-fold: caused by a)his neurological issues b)swollen larynx due to reflux c)laryngomalacia so they suggested a "sleep study" to see what percentage each thing is responsible for.  So that's where we are now... sitting at his bedside as he completes his sleep study.  We're not quite sure what this is really going to show because our sentiments have remained the same: if there is any sort of obstruction that is causing Thatcher to struggle to breathe, get rid of it!  He is making it quite clear he wants to breathe, and is fighting and struggling to do so.  We can't currently take him home in his current state, him struggling to initiate big breaths leading to blue spells which leads to seizrures which leads to a bigger struggle to breathe... what a nasty cycle and one that breaks mom and dad's hearts!!  I can't sit and watch him struggle when we can help him with his fight to breathe.  So that's where we sit now; waiting to see what is going to come of this sleep study so we can come up with a plan that will hopefully get us closer to taking our sweet baby boy home.  Oh, and right as we feel we're beginning to connect with our current neonatologist, a new one will start tomorrow for 3 days then we will get yet another one on Friday... efficient, right?!?!  Our prayer is that our doctors will see Thatcher as a life, and not just as a medical picture.  That they will have compassion on our sweet baby boy and want to do something to help him.  ..... Hmmm, I guess there was quite a bit to update you on, whoops! Sorry!

ps: the sleep study has gone great so far... Thank you, Lord!

15 comments:

  1. myka and jon canterburyApril 17, 2012 at 8:00 AM

    One of the many great things about our Father God(and something He has promised us) is that He meets His children where they are (aka:even if you cant praise Him)we have no qualifications to meet other than to accept His gift and believe in Him. He knows we are human, he knows by heart, all of our struggles. He promises us He will never leave us, even when we are at the bottom of the pit, He will be there with us. and He also promises that He will not put us through more than He will enable us to bare. He promises to be our strength in our weakness.

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  2. Your mighty prayer spoke to me this morning. "We want to pray, believing that you are able to provide our desires, but trusting that you will provide for our good, and for your glory. We desire your will be done. We need your will to be done. God we trust you, we love you, and we praise you....We proclaim that today, our God is victorious over Satan, over all forces of evil, over death, over sickness, over every obstacle our God is victorious. Our God is powerful, his voice can strip forests bare, his presence shakes the earth, He causes mountains to quake, and the seas to roar, He can dry up oceans, and bring about floods. Our God is our shelter and our shield, our stronghold and refuge. Our God loves us, and hears our prayers. Our God is everlasting, and is ever victorious."

    Thank you for sharing your life with us.

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  3. Dear Paul Family,

    Caiden's Hope was recently made aware of your NICU journey and would like to offer a small bit of assistance if we can.

    Caiden's Hope was founded to assist families "living in the NICU" with financial support in the form of hotel rooms, prepaid gasoline cards and other forms of travel.

    Our experience has shown that no family is ready for the unexpected financial expenses that are related to remaining at the hospital for an extended period of time.

    Caiden's Hope would like to help. Please contact Caiden's Hope at 713-444-3412 if you wish to do so.

    Thank you

    Wayne Keller
    Executive Director
    Caiden's Hope
    www.caidenshope.org

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  4. I can say that I know how difficult it is to hear the words from a doctor that your child is not expected to survive. I also know the intermitten spells between heavy-hearted, selfish prayer and that of giving yourself and your child over to the Lord. When we see our children hurting and struggling, it becomes so easy to get lost in the prayer of pleading with God to heal them and give us our child to love and teach. Unfortunately, that is not always God's plan. I don't say any of this to encourage you to make rash decisions and go against your hearts in order to follow a doctor's advice. Doctors are educated and have seen many things that most of us will never understand. But we are parents to these sweet little bundles and know them second only to God himself. Listen the doctor's advice and then pray for God to give you direction as you have been doing. God will show you the way, whether you like His answers or not. When I was serving my time as a parent in NICU, I had that faithful night that I realized what you have expressed in the above post. I realized that perhaps my child coming home with me to live a long life was not what God had planned; perhaps it was. Regardless, I had to completely turn myself over to God and pray for my own unfaithfulness and my unbelief. My prayers are with you and sweet Thatcher that you find peace with whatever God has in store for your family. May you find strength in your faith and may your faith find strength!

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  5. Your faith and knowledge of God's Word and promises for us never ceases to amaze and bless me. I think your blog should be turned into a devotional book at some point. The truths you share can be applied to so many of the struggles we face when our faith is tested. We continue to pray for Thatcher in Urbanna, Va. Our children like seeing the pictures of him growing. A little girl named Ella prayed that Thatcher would keep breathing. Tariq prayed that God would make Thatcher better. And they expect God to answer their prayers because their faith is unwaivering. The faith of a child is a strong faith. We will continue to pray for you ALL and we are blessed by YOUR faith, even tested it is a testimony of how much you love and are loved by God. May the peace that passes understanding be with you today and always.

    Sandra Davis Dize

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  6. Your prayers and son and family are being lifted up in greater San Antonio, every day. Thank you for showing us how to not only love our children, but love our Lord. Jay Aldy

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  7. God is being glorified and His good is being accomplished in your family and the church everywhere because of Thatcher. Praying for you.

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  8. Praying for you Thatcher and your family. I have four months baby boy and every night when I am up I am thinking and praying for Tratcher to be healthy and to be able to go home soon.

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  9. Never ceasing to pray! While God is watching over Thatcher, may He give comfort and peace to you and Eric! Thatcher has already accomplished spreading the Word, Faith, Miracles Performed, and Love of God to more people than any Christian could do in a lifetime!

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  10. The Lord is working. You are maturing past your years, and God is being glorified. He doesn't make mistakes. What a testimony you now have about how the Lord turned you from following your own agenda to wanting His will. It is always easy to talk about and to plan to do, but it often painful to put into practice. Jesus Himself knew it when He said, "Not my will, but Yours be done." I have an autistic child and I remember well when I started praying for God's will that she could have a relationship with Him--not necessarily one that I could perceive, but it was enough that He could enjoy her. Much as God loves us, it is not all about us but about Him. So continue to praise Him for His goodness. Hang in there. Many have gone before you, and we still love the Lord even though not everything turned out as we would have preferred.

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  11. Whitney and Eric, Each time I read (and re-read) your blog, I want to write something that I think will be an encouragement to you, and yet my words so often feel empty, hollow, trite cliche's that I fear would come out that way if I were to type them.

    I find, that instead of me encouraging you, your words are a ringing encouragment to me. As though the Lord is speaking to me, through you, offering ME encouragement, when I can't for the life of me figure out why.

    But this morning, as I read your prayer, I realized that the reason God is using you to encourage others is because of your faithfulness. You are like David, crying out to the Lord, and yet in the same breath praising Him, glorifying Him, and urging those of us who love Him as well, to do the same. And all this in the midst of your circumstances.

    Who are we to grumble? Who are we to complain? Who are we to say our lives, our circumstances, our journey is too hard? When you two are walking a journey that none of us could withstand with such grace. And beyond grace, with such compassion for others in the process. I can imagine that you two must be lights in a very dark place called the NICU. Because hope follows you. It radiates from you, even through your blog. It must permeate the darkness and the hopelessness that would otherwise be around you and the other families that currently call the NICU home.

    God is using you and Thatcher to be hope to a world wrapped in darkness. I am so humbled to know you. So humbled by your journey. So humbled by your faith. So humbled by your belief.

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  12. Mark 11:22-24 ~ Jesus said "Have faith in God." Some translations say "Have the GOD kind of faith." "Truly I tell you, if anyone (that means everyone, it means you) says to this mountain,'Go, throw yourself into the sea,' and does not doubt in their heart but believes that what they say will happen, it will be done for them. Therefore, I tell you (Jesus is still talking about talking to that mountain) whatever you ask for in prayer, believe that you have (already) received it, and it will be yours.

    Your prayers are not selfish. God is a good God. He has already said He will grant you the desires of your heart. The miraculous has been happening even though the spectacular seems to be absent. Thatcher is a testimony to the greatness of God. If the doctors were all-knowing then Thatcher wouldn't have made it out of the delivery room. It the doctors were gods, your baby wouldn't have normal test results.

    You already know this. God loves you. Jesus has already done the work. The Holy Spirit is in you, reminding you of the Father's love for you and your baby. It took Joshua and Caleb 40 years to enter into the promised land. They were surrounded by so much unbelief it would have been easy to cave and go with the crowd. But they didn't. And neither will you because OUR God is faithful. He will do what He said He would do. All you have to do is hang on to the faith you've shown so far.

    The devil is a liar. And a loser. Jesus stomped him on his own turf during those three days in hell. He stood on the devil's neck and then paraded him before the congregation. And then Jesus preached salvation to all those waiting and took them ALL to heaven, leaving hell an empty place. The devil was defeated so badly he'll never recover from it. The devil is like a roaring lion, not an actual lion. Do this: take your right hand, form a right-angle with your thumb and first finger. Hold it up to your forehead so that anyone who sees it sees a big L. That's the sign for Loser and you're just reminding the devil that he's a big loser. Loser. I smile when I say that about the devil.

    Jesus won for you and for your baby. He's God. He's on your side. Speak to that mountain. Jesus spoke to the fever in Peter's mother-in-law and it had to leave. He spoke to the seizures and they had to stop. He gave you the same authority. You can do this. You can walk in the anointing that Jesus has. Your prayers are not selfish.

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  13. I am praying for you all. "We ought always to give thanks to God for you, brothers, as is right, because your faith is growing abundantly, and the love of every one of you for one another is increasing. Therefore we ourselves boast about you in the churches of God for your steadfastness and faith in all your persecutions and in the afflictions that you are enduring." 2Thessalonians 1:3-4. May God give you healing, peace, hope, joy, and even more faith. He is able!
    Barbara Pachman

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  14. Each post of yours I am touched and seriously amazed that you have the time to write such genuine thoughts that are reaching so many people I am sure you cannot fathom during this hectic time in your life. I hope you find peace in knowing Thatcher is definitely clothed in love and gracious prayers to our Lord. Thank you for breathing into my life your faith, love, patience and servant hearts. Blessings to you!

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  15. I feel blessed to hear your words. You two are so wise, listening to the very words of God to throw off the lies Satan is sending. Thatcher is enjoying your company and the story of Caleb. I also feel blessed to pray for Thatcher. I've never enjoyed praying for someone so much. God has made promises for you to hold on to, and His will is something that you will rejoice over. Keep up the endurance. Keep running the very hard race. Just like a marathon, the harder it is, the bigger the victory in the end. Thatcher is being used to speak to the nations for our Lord. Love y'all.

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