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!