Thursday, July 19, 2018

When "Today" is Hard

Today there is no pep in my step.

Today I am forcing my smiles.

Today I am struggling to do each "next thing".

Today my words aren't flowing freely as I write.


Maybe you've experienced a day like my "today".  You are NOT alone!  Even Jesus, as He prepared to suffer and die on a cross for our sake, had a day like this.

In Matthew 26 Jesus said, "My soul is very sorrowful, even to death...My Father, if it be possible, let this cup pass from me..."

Are you overwhelmed with sorrow?  So was Jesus.
Do you plead with God for different outcomes?  Jesus, Himself, did the same thing.
When you feel alone in your circumstances, you can know that He is right there with you, because He has been there.

You are not alone.

But in the end, Jesus did not stop there.  Despite his sorrow, Jesus continued on in His prayer by saying, "nevertheless, not as I will, but as you will...My Father, if this cannot pass unless I drink it, Your will be done."

Do you have the courage to say the same?
Do you trust your Heavenly Father enough to put it all in His hands, resting in the fact that His will is best?

My prayer today - on the dreariest of days - is one of surrender.  It's not an easy prayer to make, but it's necessary.  I don't know how else I could go on in these circumstances - day after day - without being fully surrendered to God's will.  This doesn't make it easy, and it doesn't mean I will always have pep in my step...But it does mean that, at the end of the day, I will always have peace.

"Rejoice in the Lord always; again I will say, rejoice.  Let your reasonableness be known to everyone.  The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:4-7

PEACE knowing that my Heavenly Father knows best.
PEACE trusting that He is using this story - each hard moment - for His glory.
PEACE that we cannot comprehend...but I have felt - over and over again.
It's unexplainable, but oh so real.  Praise God!


Samuel is still fighting daily fevers.  They had to go up on his ventilator settings yesterday after a few days of really struggling to breathe and having a few too many episodes of turning blue.  His heart rate is sometimes over 200 when he's sleeping.  And the doctors still haven't found a good reason as to why any of this is happening.
Have there been good moments mixed in?  Absolutely!  We have had many special moments with Samuel over the past 2 weeks - from playing with new toys, to finally having the ability to establish a bedtime routine with him.

Prayer Requests:

  • We found out this week that Samuel has quite a few stones in his gallbladder.  Although this can be a cause for infection, they don't see any signs of infection in Samuel's gallbladder.  They are watching it closely and trying to decide what needs to be done.  Please pray for God to grant wisdom in this area and that there wouldn't be any infection!
  • Samuel has had cultures sent in from his trach 8+ times now.  It is not uncommon for trach cultures to have some bacteria in them, because it's a moist area, but usually just having a few of any bacteria, without any other markers, doesn't indicate infection.  Samuel's cultures have had the same kind of bacteria in it for a while now, without any other indicators of an infection in the area.  Yesterday, after sending in yet another culture, they decided to start Samuel on antibiotics again, even though they aren't really convinced it's an infection.  Please pray that God will use these antibiotics to benefit Samuel's body, and that the bacteria will not become resistant to the antibiotics.
  • We have watched Samuel's intestines drastically decrease in size over the past 3 weeks!  Please pray that this will continue so that they can reverse his ileostomy soon.
  • Samuel's lungs always take a hit whenever something else is troubling Samuel's body.  The fact that his lungs suddenly needed higher vent settings is being attributed to the fact that his body - especially his heart - is having to work so hard due to the fevers and whatever else is going on.  Pray that God will protect and strengthen Samuel's lungs.
  • The doctors are still deciding on Samuel's heart - watching to see if the coarctation gets better or worse, if the gradient across the mitral valve increases or decreases, whether the VSDs are getting smaller, and making sure that the bands on his pulmonary arteries are still doing their job without being too tight or too loose.  There are a lot of decisions that will have to be made regarding Samuel's heart, and being transferred back to Arkansas Children's Hospital any time soon depends largely on those decisions.  Please pray that God will grant wisdom to the surgeon, doctors, and us, as the time for decisions draws near.
  • Samuel is now on continuous feeds of 20 ml/hr!  This is the highest rate he has ever been on!  There is still a ways to go to get to his goal volume and calories, and to transition him off TPN, but we are thankful for progress!
  • Samuel's intestines are continuing to shrink back to their proper size!
  • Samuel's lungs responded very well to the ventilator changes!  Although it is hard to see him going "backwards" on the ventilator, we are so thankful for a machine that can help him!  Within 5 minutes of the increased settings, Samuel was back to his content self for the first time in 2 days!
  • Samuel is slowly getting stronger!  We are so thankful for all of his wonderful therapists!
Here are some pictures for you to enjoy!

Although he's been rocking the no-clothes and wet-rag-on-the-head look for nearly 2 weeks now, Samuel still finds reasons to smile!  We pray daily that God will give this little guy joy, and although a lot of the days have been rough with tears and pain, God has graciously granted moments of joy!

Samuel got a new play mat! He was pretty overwhelmed at first by all of the new things to look at, but he loves his new toys!

No matter how bad of a day you might be having, it can always be made better by sitting in daddy's lap to read books!

This is His story, and it is ALL for His glory!


  1. We continue to pray daily for y'all and for Samuel, love seeing the pictures and will continue to keep praying for God to work miracles and provide, healing, comfort, rest, peace, joy, and hope for all. <3

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