LOVE indeed!

imageA friend of mine, Audrey, commented on this photo when I posted it recently.  She suggested that it looked like Charlie was signing “I love you!”  My immediate thought was, why yes-of course he is!  And if not, I know he would want too.  Recently one of the nurses in this hospital commented on their amazement of our vast prayer network and love surrounding Charlie.  I thought to myself, “YES, and he doesn’t even know the half of it!”  Really, he has only seen a small portion of the prayer and love that surrounds little Charlie.   We continue to stand in awe over the thousands of people that are helping us fight for Charlie’s precious life through prayer.  Neighborhood prayer groups, our church, sister churches, blog readers, friends of a friend of a friend, Sunday schools, family, community workers, hospital janitors, national ministries, small children…the list is endless!  We are grateful for our sweet mail lady who is often bringing stacks of mail to our door with cards, letters, and prayers from Samaritan Ministries and friends.  So I think Audrey got it right…Charlie says thank you and I LOVE YOU!

We had a good week with little baby steps forward.  Charlie currently has 3 leaks from his incision, but we have been feeding milk into his intestines for about a week.  Until today that is.  This morning the feeding tube clogged and the milk stopped.  They tried everything they knew of to try to get it to open, to no avail.  Monday morning he is scheduled to get a new tube.  Also, his breathing has been a little bit more of a concern.  We don’t have a lot of margin and are hoping for an improvement to avoid the need for any further intervention.  Charlie’s road is tenuous…it is steep…it is trying…it is exhausting…it is painful…it is humbling…it is a privilege.  It is a privilege to be called to suffer- to suffer for Jesus who is pro-life, who loves Charlie more than I am capable of, who has plans for Charlie’s life, who has given this boy a “fight” that is indescribable.  It is an honor to walk a path that I could not walk alone, but God is with us and directing our ways.  He is providing for us, He is strengthening us, He is cultivating joy, He is building character in our children, and He is showing Himself in mighty ways, even in the little things.  As for any light at the end of this current tunnel- it may not be visible, but the light of Christ’s LOVE continues to illuminate the path through this tunnel, oh how I love my Father!

Romans 8: 35-39. What, then, shall we say in response to these things? If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? Who will bring any charge against those whom God has chosen? It is God who justifies. Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:                                                                                     “For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons,neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Prayer Requests:

Please pray for Charlie’s caregivers.  Pray for strength and protection for them.  That they would know the love of Jesus.  Pray that God would continue to give them a love for Charlie and the stamina to hang in there with us on this long journey.  Pray for wisdom and knowledge for next steps with Charlie’s belly and heart.

Pray for Charlie:  wound healing, feeding tube resolution to begin milk again soon, improved breathing status, strength, joy, the knowledge of the presence of God every minute.

Pray for continued protection for our family as we traverse this trial.  Increased faith. Growth.  Joy.  Love.

 

 

Charlie’s Impact on me…by Savannah

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The impact of Charlie in my life…

We were elated to welcome another Fine boy into our home on September 3rd .  It was so wonderful to be changing diapers, making homemade wipes, doing baby laundry and of course savoring baby snuggles again! (Moby slings are my favorite!  Though this had interrupted my plans to leave that morning because I was going to be serving up at our local Father Son Retreat that weekend, I would take a baby any day! Little did I know that in the next 6+ months ahead God had pre-made greater and bigger plans for this little man and our family.

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About a week after Charlie came into our home, several things made it clear that he needed to go to the hospital immediately.  That first day and the days following required me to TRUST the Lord and acknowledge that HIS ways were BEST. The kids and I often spent time in a little circle or scattered about pleading with the Lord for Charlie’s life to be spared and healing for his little body. (Phil 4:6-7)  At first it was  easy to be hopeful and optimistic about our future with Charlie, and to say the least, I was so thankful to even have Charlie with us still after all that had happened. But as time wore on it became more difficult to trust and have faith that the Lord would work a miracle in Charlie or even heal him. I never thought I would struggle with this and had always thought I could trust the Lord no matter the trial. I think the Lord decided to test my faith in Him. Praise the Lord through His love, mercy, and steadfast promises, I never turned my back on God and lost faith in HIS marvelous ways.  In fact I found more comfort in Him as things became difficult. His word is full of hope and promises, and you can be sure I have held on to as many as I could find!
To name a few:

Hebrews 13:5
“I will never leave thee, nor forsake thee.” 

                                                                              Jeremiah 29:11                                                                             “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Isaiah 40:28-31
“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

Romans 8:37-39
“No, despite all these things, overwhelming victory is ours through Christ, who loved us.  And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”

I still have doubtful moments, but the Lord never ceases to remind me of His power and ability to do all things, even BIG things! It has been impressed upon me that God can answer our prayers… and exceedingly more.”  (Eph. 3:20-21)

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When dad told me that Charlie was born with an extra chromosome and the test for Down syndrome was positive, my first response was discouragement. All the visions I had of Charlie growing up, marrying, having children, etc… had shattered. A memory of a few years back came flashing to my mind…..We were at Cold Stone and I had seen a little down syndrome toddler; he was friendly and we exchanged smiles and waved at each other as we walked out. To tell you the truth, it was “love at first sight”. Upon arriving home and having thought about it, I prayed that the Lord would someday give me a little down syndrome child. I knew that the Lord’s will would be done, but not the way I thought. 😉
God is good…He knew our need; my prayer was His will. This was an answered prayer! Clearly the Lord had a purpose for Charlie! My discouraged look quickly formed into a smile, then a chuckle. Wow! The Lord has a sense of humor. The Lord has grown my faith, love, trust and relationship with Him and my abilities at home tremendously in such short time. After revealing a stronghold of fear in my life, the Lord is graciously using this trial to teach me to kick it out and advance in the confidence of Christ and His blood, shed for me on the cross. I have no reason to hold guilt, shame, fear, etc… because Christ forgave it all and I am a new creation. (2 Cor. 5:17) I can move forward in faith knowing that Christ will use hardships in my life to purify me. (1 Peter 1:7) I can overcome obstacles and face trials and hardships because I know that I have victory in Christ. (1 Cor. 15:57) Though I would have never wanted this, I would not trade this for anything.

Rejoice in the Lord

God never moves without purpose or plan
When trying His servant and molding a man.
Give thanks to the LORD though your testing seems long;
In darkness He giveth a song.

I could not see through the shadows ahead;
So I looked at the cross of my Savior instead.
I bowed to the will of the Master that day;
Then peace came and tears fled away.

Now I can see testing comes from above;
God strengthens His children and purges in love.
My Father knows best, and I trust in His care;
Through purging more fruit I will bear.

O Rejoice in the LORD
He makes no mistake,
He knoweth the end of each path that I take,
For when I am tried
And purified,
I shall come forth as gold.

By Ron Hamilton

 

 

The Lord continues to test me, and though I have struggles and weaknesses, the Lord never fails to see me through. Praise Him!
I look forward with great anticipation to seeing Charlie’s story unfold. I love him so much and could not imagine life without this precious gift!  I am literally “In Love” with him. And I know that beneath those rolls chub and sweet baby-ness there is a heart like a lion, ready to fight for his King, and his King will see him through each battle to the end!
The Lord has been abundantly merciful, and faithful to us during this new season of our lives.  The Church body has demonstrated Christ’s love in such a tremendous way to our family and Charlie. They have been a living example of 1 Corinthians 12. We love them all so dearly and thank the Lord for them!
The piles of Samaritan Ministries support envelopes that come in every day are just a small reminder of how good God is supplying our every need. These cards are filled with scripture, prayers, encouragement, testimonies, love and sympathy from thousands of Christians all over the U.S. What a blessing! We are truly overwhelmed by all of the love shown to our family and Charlie …..and all we can say is….“Praise the Lord, To Him be the Glory forever!”

With love to all of you!
Savannah Fine

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Romans 5:3 –  And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.

Photo Credit: Breezy Brookshire

 

The best birthday gift

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Psalms 36:5 Your steadfast love, O LORD, extends to the heavens, your faithfulness to the clouds.

Bob asked me what I wanted for my birthday…the answer is obvious, but not something he could buy at Target or build in the garage.  The only thing my heart longs for is for Charlie to heal.  Well, in God’s goodness, Charlie has taken a few steps forward in the last day.  His bowels are behaving and moving in the right direction and he is extibated!  He is becoming more alert again as we are able to wean his pain medicines.  So for my birthday, I am thankful for baby steps in a good direction.  I am grateful for a loving grandma who can be with Charlie while I play with my family.  I am so thankful for another birthday…another year to have such a joyous calling:  daughter to my King, wife, mother, sister, daughter, friend, teacher, nurturer.   Thank you for continued prayers for my little warrior boy!

 

Update

Charlie slept most of the day.  Understandably, as yesterday was quite eventful!  It still appears that things are moving through the bowels.  This is the good news.  The more challenging news is that it appears tonight that there is another leak on the other side of the incision.  Time will tell what will come of it.  Pray for wisdom for Bob and I,and  for the surgeons.  Pray for a miracle of healing in Charlie’s bowels.  Pray that we could transition to milk and it would help him heal properly.

Peaceful Night

I am so thankful that Charlie had a very peaceful night, hopefully recovering and healing.  He went through A LOT yesterday.  He is stable and we are watching lots of numbers to track his progress.  It appears the fluids are possibly moving the right way through the the intestines-though it’s hard to tell for sure.  Hopeful on that front.  If we can get to a point of feeding him, it could change the game for him in a very positive way.

An encouragement to you:  Enjoy your family today, enjoy the blessing of home, don’t take peace for granted, love and encourage your children, invest in your spouse, seek God if you know him- seek him especially if you do not know him!

 

2 Corinthians 2:14  But thanks be to God who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the                                          knowledge of Him everywhere.image

No Hill For a Climber

Charlie is a climber!  God has given him the most tremendous endurance of anyone I know.  Today we extibated (removed the breathing tube).  He was obviously having difficulty breathing.  After trying to clear his airway it seemed as if his airway closed. Within minutes our little room turned into a chaotic ER.  They tried several things without success and ultimately had to reintibate him.  They began a very small amount of fluid in his feeding tube today in hopes that it will run through his intestines the right way.  Still watching.  The hole in the incision is growing and leaking a lot.  Due to several signs of possible infection they took samples of every fluid from his body for testing and began antibiotics…again.

“The LORD gave, and the LORD hath taken away; blessed be the name of the LORD.” Job 1:21

(thanks Jeff for the “no hill for a climber” quote, I can still hear you saying that and often repeat it to myself when facing a difficulty.  So grateful God gives us what we need to climb!)

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Never felt safer!

A letter to my church:  Isn’t the BRIDE OF CHRIST beautiful?…and I am sure I only see specks of it’s GRAND beauty due to my finiteness. From my point of view: she is magnificent! Thank you church family, precious friends, comrades, bucklers, cooks, encouragers, prayer warriors…for continuing on with us in this adventure of tremendous praise, difficulty, beauty, pain, growth, and battling. If any church has ever been willing to put on the muck boots and wade into the muddy river to help save brother’s and sister’s- it is you. It is a comfort that God is EVER-present. He is working. He is comforting. He is strengthening. He is making things new… It is amazing. All the new developments are familiar as we have experienced similar things before. Only the really neat thing is that we are different this time, we have more courage, we have more faith, and we still look forward to a bright future- even today! Charlie is still fighting and his mom (and family) will not give up the fight. The news could be dashing, but I choose to see like Elijah’s servant, the massive angel armies that are encamped ALL around us… I’ve never felt safer!

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As for God, His way is perfect;
The word of the LORD is proven;
He is a shield to all who trust in Him.
Psalm 18:30

So I will pick up my shield among the rest of the provided armor needed for this battle. Thankfully I know the ending- the victory is HIS!

Put on the whole armour of God, that ye may be able to stand against the wiles of the devil. For we wrestle not against flesh and blood, but against principalities, against powers , against the rulers of the darkness of this world, against spiritual wickedness in high places.  Eph. 6:11-12

Thank you for the support and strength that your prayers are for us in these days.

With much affection for the Bride,

Debbie

 

The Discovery

Charlie just came back and here is what we have learned:

1)Leaking through incision from stomach via a fistula or tunnel from stomach to incision.  This could potentially heal on it’s own and is much better than if it were an intestine.

2)Another mystery leak was discovered by his ostemy.  Could be OK and dealt with when they repair the Ostemy.

3)We will look at him again tomorrow and if it is confirmed that there is no leak in the intestines, we will begin feeding him through the tube that bypasses the leak in the stomach.  Food would be super helpful on every front for him.

Prayer:

As we have learned, a lot of this is just waiting to see…so prayer for healing, and all the best case scenarios (still some unknowns), no further complications, no infection, more courage and strength for sweet little Charlie.

Still hoping to extibate him today…

 

Investigating

Charlie is having a study done right now where they can test and see where the leak in his abdomen is.  We know this road, we’ve been here before…God was faithful then and He continues to be faithful now.  Again I recall God’s beautiful promise of a shield in Psalm 5:11-12

Let all those rejoice who put their trust in YOU; Let them ever shout for joy, because YOU protect and defend them;  Let those also who love YOUR name BE JOYFUL in YOU.  For You, O Lord, will bless the righteous with favor YOU will surround him as with a shield.

Resting in God’s PERFECT PROVIDENCE as we determine the path ahead.  Charlie had a sweet day yesterday with a visit from Marcie and lot’s of singing from his family via FaceTime.  HE LOVED IT and after many songs they sang him to sleep…

CHARLIE IS BACK…I will keep you posted as I learn anything.

 

 

PRAYER REQUEST

Could you all please PRAY for Charlie right now. There are signs of a possible leak again… Surgeons are meeting now to decide what to do. Please pray that we could find the source of the problem and that little to no intervention will be needed. “the LORD gave, and the LORD hath taken away; blessed be the name of the LORD.” Another opportunity to praise him in ALL things…

Trusting in the GREAT Physician