HIS Goodness and Mercy

———————————–

I will remain confident of this: I will see the goodness of the Lord… Wait for the Lord; Be strong and take Heart!

Ps. 27:13-14

———————————–

Wow! In some ways it seems like years since we began this journey, but in other ways, only a blur. To think that our little man is finally home and the long hospital stay is finally over…..the only words that can come in explanation are, “Wow, that was totally the Lord!…He sustained and kept us. HE was so good, gracious and merciful to us during that time.”

The funny thing is, though we may talk about this journey in a past tense, we are still on it.  At the end of every hard hike usually comes a gratification by the AWEsome views. Even so, we have only just climbed a “high peak” in our walk and are now experiencing a breathtaking reward…well worth the hike might I add 😉  The Lord continues to sanctify and work in us, even with Charlie home…which is wonderful! We are still on the same journey, but the Lord has and continues to answer many prayers on Charlie’s behalf.

IMG_5908IMG_5910IMG_5921

Now that we are all back together again, there is a new business and atmosphere in our home. One filled with  more Joy, Peace, Diligence, Dependence on the Lord, quality family/sibling time and much more. Not to say these things were lacking before, but they have been tried and tested and purified to a new level… “And I am certain that God, who began the good work within [us], will continue his work until it is finally finished on the day when Christ Jesus returns.” Phil 1:6

Charlie is developing mental and physical skills rapidly (taking a strong major in the cuteness arena). He loves to roll over and hold his head up; He reaches for us when we go to pick him up; He enjoys discovering new toys, textures, and scenery; He can support his own neck and back very well. There is nothing quite like sleeping with this little guy in your arms…he is so precious.

As we settle Charlie in and return to life as a family once again, we are putting our focus to the start of another exciting school year (I am sure many of you relate)…while still soaking up the last few weeks of the warm summer outdoors. 🙂  

More to come… Savannah Dale

 

Take my will and make it THINE

 

image

Take my life and let it be
Consecrated, Lord, to Thee.
Take my moments and my days,
Let them flow in endless praise.
Take my hands and let them move
At the impulse of Thy love.
Take my feet and let them be
Swift and beautiful for Thee.
Take my voice and let me sing,
Always, only for my King.
Take my lips and let them be
Filled with messages from Thee.
Take my silver and my gold,
Not a mite would I withhold.
Take my intellect and use
Every pow’r as Thou shalt choose.
Take my will and make it Thine,
It shall be no longer mine.
Take my heart, it is Thine own,
It shall be Thy royal throne.
Take my love, my Lord, I pour
At Thy feet its treasure store.
Take myself and I will be
Ever, only, all for Thee.

We knew it would happen.  We didn’t want it to happen.  We were enjoying having Charlie at home.  We were getting used to being together.  Sunday morning Charlie was not acting himself, his nose was running, and he was requiring quite a bit of oxygen.  After trying many things and troubleshooting our home equipment, we determined it would be in Charlie’s best interest to have him checked out.  Once in the ER he developed a fever and that put us on the 5 alarm plan for any baby with a central line and a fever.  Lot’s of blood draws, lots of cultures of every fluid in his body, and the start up of antibiotics.  They decided to keep us in the PICU overnight and then moved us upstairs for the transition home.  Charlie returned to his baseline on Sunday evening, but they like to watch him until his cultures come back.  Thankfully all was negative and he was likely just dealing with a virus that the viral panel didn’t display.

image

Though my strength was feeble, my mama’s heart was feeling like it was being run through a paper shredder from having to leave my sweeties at home, and the temptation for discouragement was very real- I kept singing the words to the song above and focusing on WHO I was walking this path for.  How quickly my mind would stray.  “Deb, you can do this for Jesus!”  I would say.  “Yes!  I would die for Jesus- this is easy!”  Later my heart would grow sad picturing Isaac’s eyes when he learned we were headed back to the hospital.  “This is for your King! He will take care of Isaac. Deb, you cannot save Isaac.  You cannot save your children.  God can take much better care of them than you can!”  By the end of the day I was exhausted and weary.  When the nurse informed me that my daughter (my buddy, encourager, and helper) wasn’t old enough to stay with me…I melted.  Then the words of my dear sister in the Lord rang loudly in my ears…YOU WERE MADE FOR THIS, DEBBIE!  “OK Lord, there is a reason that we are back here, that I am being forced to stay here alone, and find peace and rest in YOU alone, while laying the things that are most precious to me- at your feet.  Yes LORD, I will do this for you.  Again.  And Again.  And again. I delight to do this for you.  I will choose to exalt in this tribulation.  For your sake- it is an honor.”  I ran out of my own strength many months ago.  When I go back to trusting in my own strength my faithful Father quickly reminds me that it is only His strength that will see us through this.

IMG_2893

THANK YOU TO ALL OF YOU FAITHFUL PRAYER WARRIORS.  OUR MAIN PRAYER REQUEST REMAINS FOR CHARLIE’S SMALL INTESTINE TO FUNCTION PROPERLY.  THIS WOULD ALLOW FOR A CASCADE OF SIMIPLIFICATION FOR CHARLIE’S MEDICAL NEEDS.  PRAY FOR HIS HEMOGLOBIN TO INCREASE.  PRAY FOR THE SURGERY TOMORROW TO REPLACE HIS CENTRAL LINE WOULD BE SUCCESSFUL.  PRAY FOR CHARLIE’S LIFE TO BRING GREAT GLORY TO GOD!

HOSANNA

image

Little Enid (life, soul) Hosanna (praise, adoration to the Father, joy) displays our feelings about having Charlie home with his family again!  Oh to be all together again is an overwhelming joy.  We praise God for His faithfulness to us in this journey.

image

Daddy and Enid were practicing trach care on the dolly the hospital gave to us.  Daddy is AMAZING.  God has given daddy, Bob, such a strength, a fight, and tremendous faith that has challenged and encouraged me along this path.  He adores his little Charlie boy and embraces the challenges we face as his parents.

image

Charlie lacks no love or care at home.  This was a picture taken just after Savannah had bathed him.  He promptly snuggled up in her arms and took a good nap in his lion blanket.  Savannah said that her favorite part of Charlie’s care is bathing him and dressing him.

image

Personally, I LOVE being in my home with all my sweeties together.  Life is full and we are developing a new normal, but we are grateful to be together again.image

Enid and grandma are enjoying some of God’s creation by smelling the bright purple flowers that are in bloom.  This was at a deaf dog show that was performed with the intent of encouraging people to look at people with disabilities through a lens of seeing what they CAN do and not what they cannot do.  It was very sweet and encouraging in the context of our little Charlie boy.  God has great purpose and intention with Charlie’s life.  This journey has been hard, stretching, faith-building, and taken us way beyond what we ever thought was even possible in our lives…it will be a joy to continually mine the treasures out of this journey.

Genesis 50:20   You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

Since coming home, we have landed back at Children’s.  Thankfully just for a short stay…more in next post.

It’s True…

Yes, everyone it is true, our Lion-Hearted Charlie is home!!  (Asleep in my arms) Thank you LORD!   What a privilege and a joy to be able finally to care for our little warrior AT HOME!

image.jpeg

Lamentations 3:22-23.                                                                                                                         22 The steadfast love of the Lord never ceases;
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.

Charlie did very well with the transition, and he was all smiles before he decided to take a nap.   Grandma is staying with him tonight while we all rest up for tomorrow when we’ll start figuring out our “new normal”.

image

Thank you all for your prayers.  The battle is not over, but we just took a BIG step forward!

Sarah

P.S. More pictures to come!