He Giveth More Grace

“My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways.”
– James 1:2-8

Today has proven to be a big day.  We, along with Charlie’s team (army) have decided that it is in his very best interest that we give him a tracheotomy.  This was a very difficult decision and thankfully God made it abundantly clear (as we asked) that this is what needs to happen for Charlie to move forward.  We hope this will help Charlie to be a lot more comfortable, stable, and able to grow, develop and heal.

Thank you to so many of you who are faithfully praying on Charlie’s behalf.

Prayer requests:

1). That there would be minimal to no damage to his lungs between now and the tracheotomy.

2). That his air sacs/alveoli would perk up, open up, function well, and heal after he gets his trach.

3)  Also pray that he will remain stable until the procedure can happen.

If you are anything like me the sound of a tracheotomy is a bit overwhelming.  I am thankful for amazing doctors and nurses that have helped us understand how doable and reversible it is.  I am glad I have met some parents that also have children with trachs and they have been helpful in helping me to understand it better.  Our surgeon is working on scheduling this procedure so we don’t know when it will happen yet.

HE GIVETH MORE GRACE

He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials He multiplies peace.
When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.
Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.
His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

Annie Johnson Flint

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“GO FORWARD”

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Charlie and I enjoyed some good snuggles tonight.  Sarah and I had fun marveling at his darling rolls and beautiful hair.  After singing to him we did all of his “cares” and tucked him in for the night.  He is sleeping soundly and peacefully now.

We will sleep fast as tomorrow morning at 7:15 we have a “care conference” with Charlie’s team.  Charlie has been uniquely designed to be fairly complicated which makes his team a little bit more like an army.  I am praying that this healthcare army is filled with hope, optimism, creativity, and good ideas to get Charlie back home with his family as we meet to discuss Charlie’s future plans.  We will be discussing his challenged respiratory state and the plans to help his heal.

There are many unknowns- to man at least.  Though God knows the plans He has for Charlie!  I keep imagining God parting the waters for Charlie as he did for the Israelites as they fled Egypt.  I trust that God will make our next steps very clear. May the meeting tomorrow be directed by the Father’s merciful and mighty hand…

Exodus 14: 13-16  And Moses said to the people, “Do not be afraid. Stand still, and see the salvation of the Lord, which He will accomplish for you today. For the Egyptians whom you see today, you shall see again no more forever. 14 The Lord will fight for you, and you shall hold your peace.”

15 And the Lord said to Moses, “Why do you cry to Me? Tell the children of Israel to GO FORWARD!!! 16 But lift up your rod, and stretch out your hand over the sea and divide it. And the children of Israel shall go on dry ground through the midst of the sea. “

My Birthday Girl’s

Happy Birthday dear daughters.  Little Enid Hosanna, you are such a gift from God.  You bring joy into the hearts of everyone who is around you.  You are so cheerful, thankful, and kind.  You are the perfect #9 in the Fine bunch!  Your position in our family is of utmost importance and I anticipate the future as God unfolds your giftings and directs your life according to His purposes.  Charlie is one blessed little boy to have you right above him- I have a feeling you will be very important to one another!  Your nana (for whom you were named after) would delight in who you are just as we do.  I am thankful that you are sweet reminder to many of us of my mom and her joyful spirit.  Your middle name Hosanna- how fitting for you little lady, especially as you were born so near the celebration of the resurrection of Jesus.  It is a word used to prolaim praise, joy, or adoration!  Happy 3rd birthday sweetie pie.

Savannah Dale…I will never forget the overwhelming and overflowing of joy that your daddy and I experienced when you were born.  That is why we used the verse:

James 1:17  Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

on your birth announcement.  You were a good and perfect gift from God.  I am SO grateful to God for the beautiful young lady you have grown into.  You challenge me, you encourage me, you bless me- you have chosen to make God your 1st priority and it is evident in so many areas of your life.  Thank you for all of the beautiful and sacrificial serving and nurturing you have poured out this year onto your family and all those around you- you have been the hands and feet of Christ, honey.  You have not just risen up “for such a time as this,” you have counted it a privilege and an honor to lay your life down for so many over the last 7 months.  When you communicated this to me several months ago, it fueled me with more “fight” in this battle for Charlie.  You have SO many fans my dear…your family adores you.  Thank you for being a young lady who desires to lay up treasures in heaven!

Matthew 6:19-21  Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal:  But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal:  For where your treasure is, there will your heart be also.

 

I love you so much Enid Hosanna and Savannah Dale!  HAPPY BIRTHDAY!

Airway Wisdom

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We have had a few ups and downs over the last 10 days.  Some due to a fever that didn’t reveal itself as anything and some due to a faulty med line.  Oh the difficulties can be overwhelming and threaten to discourage us, rather the LORD continues to show himself SO big.  I am encouraged in these difficulties as I see Charlie’s strength and fortitude, as it is confirmed that the Father has and continues to grow me so much, and that even in the the darkest hours HIS presence is overwhelming!  He truly will not leave us or forsake us!

Charlie appears to be more successfully digesting the breastmilk and we will look to increase the quantity on Monday.  We have been weaning his pain Meds successfully and even dropped a heart med cold turkey the other day.  Getting rid of these will allow us to get rid of one of his two central lines.  This will be wonderful, reducing many potential risks.

One of our biggest prayer requests is for Charlie’s respiratory status to improve.  We would like to avoid any further invasive procedures for this and so we are asking God for wisdom and healing.  His difficulties seem to be due to some swelling in his little airway.  Right now his oxygenation and airway is good, but we need it to stay stable and actually improve.

Our desire and our team’s desire is to look towards getting Charlie home!  We still have a little ways to go, but with baby steps we are moving that way.  We believe that Charlie will thrive in so many ways once he is reunited with his family and we are able to care for him at home.image

3.21 Down Syndrome awareness day

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Charlie Grant…you have turned our lives upside down…inside out…and completely head over heals-with being in love with you!  9 months in the womb…we adored and cherished you.  Beautiful birth…we adored and cherished you.  6 days at home…we adored and cherished you.  E.R. Room where we almost lost you…we adored and cherished you.  As we awaited genetic testing…we adored and cherished you.  The day we received the results…we adored and cherished you.  Every day since…God has used you to change us into people we never knew we could be while we have loved and cherished you.  Charlie we love you exactly the way you are, the way that God created you.  Bob and I have talked about what an honor it is to have you and your little extra chromosomes in our life.

I am a newbie to the world of Down syndrome and I learn something new every day.  Like today.  I learned that it is 3.21 world Down syndrome awareness day.  Well, if I could make you aware of anything in regards to Down syndrome, it would be that these children are amazing, wonderful, and a delight.  The medical challenges that have overshadowed the DS for us has even been a catalyst for good things in our family.  I hope that women would fear less issues like DS as they have children.  God brings things gifts and difficulties with GREAT purpose.

So dear Charlie…may this be the first of many 3.21 days for you!!!

Below is a letter from one of Charlie’s prayer warriors:

Hello Little Charlie,

Did you know that today is World Down Syndrome Day? There are over four million people in the world with Down Syndrome and almost 100% of them say that they are happy. I wonder if God has put it into their hearts to be so content? From what your family says you are full of happiness. I know that brings glory to God. God formed you in your mother’s womb and made you just the way your are. Even now He knows every single cell in your body and how it is working AND He controls each cell. Isn’t that amazing!?

We love you and pray that God will continue to help you grow and thrive and bring Him glory.

Love, Emily and family

St. Patrick

The legacy of St. Patrick:

I bind to myself today
The strong virtue of the Invocation of the Trinity:
I believe the Trinity in the Unity
The Creator of the Universe.

I bind to myself today
The virtue of the Incarnation of Christ with His Baptism,
The virtue of His crucifixion with His burial,
The virtue of His Resurrection with His Ascension,
The virtue of His coming on the Judgment Day.

I bind to myself today
The virtue of the love of seraphim,
In the obedience of angels,
In the hope of resurrection unto reward,
In prayers of Patriarchs,
In predictions of Prophets,
In preaching of Apostles,
In faith of Confessors,
In purity of holy Virgins,
In deeds of righteous men.

I bind to myself today
The power of Heaven,
The light of the sun,
The brightness of the moon,
The splendor of fire,
The flashing of lightning,
The swiftness of wind,
The depth of sea,
The stability of earth,
The compactness of rocks.

I bind to myself today
God’s Power to guide me,
God’s Might to uphold me,
God’s Wisdom to teach me,
God’s Eye to watch over me,
God’s Ear to hear me,
God’s Word to give me speech,
God’s Hand to guide me,
God’s Way to lie before me,
God’s Shield to shelter me,
God’s Host to secure me,
Against the snares of demons,
Against the seductions of vices,
Against the lusts of nature,
Against everyone who meditates injury to me,
Whether far or near,
Whether few or with many.

I invoke today all these virtues
Against every hostile merciless power
Which may assail my body and my soul,
Against the incantations of false prophets,
Against the black laws of heathenism,
Against the false laws of heresy,
Against the deceits of idolatry,
Against the spells of women, and smiths, and druids,
Against every knowledge that binds the soul of man.

Christ, protect me today
Against every poison, against burning,
Against drowning, against death-wound,
That I may receive abundant reward.

Christ with me, Christ before me,
Christ behind me, Christ within me,
Christ beneath me, Christ above me,
Christ at my right, Christ at my left,
Christ in the fort, [i.e., at home]
Christ in the chariot seat, [i.e., travelling by land]
Christ in the stern. [i.e., travelling by water]

Christ in the heart of everyone who thinks of me,
Christ in the mouth of everyone who speaks to me,
Christ in every eye that sees me,
Christ in every ear that hears me.

I bind to myself today
The strong virtue of an invocation of the Trinity,
I believe the Trinity in the Unity
The Creator of the Universe.

 

CHAZAK and AMATS!

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Charlie’s hands were positioned like this while sleeping- like he was praying.

Dear Precious friends, family, and faithful Charlie prayer warriors,

I am so sorry I have been delayed in updating you.  It has grieved me to not be able to respond to emails and texts like I would normally want too.  It has been a very hard stretch…not necessarily for sweet Charlie boy- though there have been ups and downs.  It has been a hard stretch for his mommy.  I am tired, I am exhausted, I have felt completely spent.  I entered into a cycle of hard work, little sleep, little food, and being overly consumed with the heart wrenching details of Charlie’s journey.  It is humbling, it has broken me on many levels, it has instigated a flow of tears that is continual, and it has deeply reminded me that this load is too big for me.  It is a load that I am not meant to carry.  So again I find myself at the cross of Jesus laying my aches, struggles, tears, and grief at the feet of the King of Kings that knows my sufferings and Charlie’s sufferings intimately.

My absence is not for fear of you seeing my weakness and tears- my guess is you understand.  My guess is that you have or have had your own sightings of weakness and tears in your own life.  I don’t ever want to portray myself as something I am not.  Like I am some mighty mother made of steel- of which I am not.  What I do want you to see though is my MIGHTY FATHER who IS made of MORE THAN STEEL.  I don’t know, but even titanium seems an unworthy comparison.  You see friend, there is an enemy, his name is satan, and he would like for me to quit.  He would like me to give way to despair.  He even tempts me with thoughts of hopelessness.  He wants to whisper that abortion is a good idea for babies with difficulties.  He wants me to think God isn’t FOR me.  He would like for me to switch teams.  He wants to rob, kill, and destroy…if you didn’t know, that’s what he does!  He is awful!  He is a liar!  He is a murderer! He is deceitful! He is well disguised! And he tries to sneak through the breeches in the walls of Christians!  I will not give way to his many schemes that would like to encircle this trial!  Let’s be clear, these difficulties don’t tempt me to switch teams.  Instead, I am developing an eye for the breeches in my walls and learning to run to Jesus for the bricks and mortar to patch them up!  I have been bought with a price- a SUPER high price, the blood of Jesus, and I will remain faithful and responsive to my beloved, my first love!  So, though I may be weak and eating the dirt of humility…these are good things…you know how I know?  Because God says so…

2 Corinthians 12:9 “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

2 Corinthians 12:10 “For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

James 4:6“God resists the proud, But gives grace to the humble.”

I heard someone describing our situation to someone else and for a moment my heart sank for that poor mother of 10 living in the NICU…then I realized, it was me!  I was tempted to feel sorry for her (her was me!).  Don’t feel sorry for “her”- Rather, be reminded of the POWER of GOD in our weakness and know that I am so encouraged as I witness him turning my feeble meowing of a kitten (if even that) into something more like the roar of a lioness.  Charlie’s darling little God given roar’s in his battles have inspired me and are beginning to rub off on me…and the Lord is stirring within me a much stronger and deeper cry of a warrior!  This battle is bigger than just Charlie’s healing- it is the spirit of God moving, working, and transforming much. It is stirring within Bob, myself, and my precious family a war cry- something like this: (please take the time to watch this)

“Rak” – The rock-like ‘oomph’ of the spiritually zealous heart…Proverbs 23:17

“Chazak” is possessing a resolute and growling resolve for the glory of God…” 2 Corinthians 4:6

Simply Put – “Rak Chazak” means “All Strength and Courage for the Glory of Our God”

“Amats”: It’s rushing headlong into the most hazardous and impossible battles without pausing to consider the impossibilities.” 1 Samuel 17:45-51

“Chazak Amats” means “All Strength for Him in the Face of Sure Death”

“A tensing of all a soldier’s muscles.” 2 Timothy 2:4

“We are in a position to see souls set free!” Romans 6:22

“Your knuckles, spiritually, should turn white and you should find yourself gritting your spiritual teeth with a belligerence against the enemy…” Revelation 19:11-21

“HE GOES DOWN!” Revelation 20:10

“It’s a confidence in victory even before the field is taken.” Judges 15:14-16

“It’s lambs moving with liquid ferocity straight into the lion’s lair.” Joshua 6:1-5, 20-21

“Swift-footed, All-believing, Super-conquering, Prevailing faith in the Lord of battles.” 2 Thessalonians 1:3-11

“Be strong and of good courage!” Deuteronomy 31:6-8

“Even if we die, we win.” Matthew 19:29

GLORY BE TO GOD!!!

Charlie needs some miracles.  The doctors need wisdom from God.  Charlie is championing this war.  He is so strong.  He is so precious.  He is amazing.  He has been off the ventilator for 1 week now.  It has not been easy, but he is handling it.  He needs his breathing to grow stronger.  Food needs to digest- guts to awaken.  He needs fistula to close.  The physical therapist is amazed at his cognitive ability and social skills even on the Meds he is currently on.  She says it is amazing and that he is functioning at a very high level like 1 in 100 babies would.  Charlie loves people, loves to talk, loves to play, and is working very very hard to progress to home!

And would not let him go!

In the context of the love relationship with Jesus:

Song of Songs 3:1-4

All night long on my bed
I looked for the one my heart loves;
I looked for him but did not find him.
2 I will get up now and go about the city,
through its streets and squares;
I will search for the one my heart loves.
So I looked for him but did not find him.
3 The watchmen found me
as they made their rounds in the city.
“Have you seen the one my heart loves?”
4 Scarcely had I passed them
when I found the one my heart loves.
I held him and would not let him go…

These verses have met the depths of my soul in relation to my Savior.   There have been times that I have not been in close union and communion with Jesus.  Sometimes, sadly, I am OK with that- my heart is hard or cold or complacent.  Then…my spirit is awakened to my lack and I seek and search for my beloved Jesus like searching for a missing child at the zoo (yes I have experience-  it’s a desperate search that would not be given up short of my own death!) I cry out and I search for Jesus until I find him!  In this Charlie adventure, I continue to find the one my heart loves!  Though I am tempted to give into despair and hopelessness, in regards to Charlie, my Jesus’ love is more and more and more irresistible.  Such that I can’t run away with my desperation in trade for HIM!  Oh how my flesh wants to give way, but he keeps drawing me upward and toward himself in such a tender and real way.  If you don’t know Jesus…you really ought too!  You ought to seek him out.  I will pray that He would seek you out.  If you thought you knew love and don’t know Jesus, you’ve only tasted a tiny crumb!

Charlie was being fed and doing very well with a small amount.  He was digesting and processing properly.  Then when the amount was increased yesterday things began to back up and go the wrong way.  We have backed off and will take it slowly as we try to wean other things as well.  Charlie gave us some very sweet smiles yesterday.  He was so happy and adorable.  I just want to pick him up like a regular baby and hold him so badly.  Meanwhile I am so grateful for the “one my heart loves!” JESUS.

Look folks, it’s a….

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Everything went super well today.  The surgeon was able to replace our clogged feeding tube with ease and determined it would be easy to replace if we ever needed to.  They were also able to easily stretch the little connection to the intestines with great ease.  These were both the major goals that account for a GRAND SLAM!  We can start feeding him again as soon as things wake up and start moving!
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need.  Hebrews 4:16