Ever Wonder Why...

“My grief is beyond healing, my heart is broken.”

[Jeremiah 8:18, NLT]

It is not only Jackson’s heart that the Lord is working on over the next several weeks, but mine and Kelly’s also.  Our grief is beyond healing and our hearts are broken… and in need of God’s perfect care.  And as I write this morning, I am reminded that God is “Yahweh” (I AM WHO I AM – Exodus 3:14) and HE IS the “Comforter of my Sorrows”.   

God has revealed himself to me in a new way - time and again - throughout His Journey in Jackson’s life that goes beyond my understanding.  For the Lord has taught me that He does not merely want me to believe in Him, but to believe Him.  His desire is that we not just know about Him, but know Him. We know about God as we read about God in the Bible, but we really know God when we experience God through His Character and Nature on our journey. 

In John 17:3 - Jesus said, “And this is the way to have eternal life – to know you, the only true God, and Jesus Christ the one you sent to earth.”  Jesus shared this right after He told his disciples, “Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world.” (16:33)

Did you catch that?  Not, I will overcome…but I have overcome.  The trial, adversity, hardship and sorrow that you may be facing right now – that we are facing right now – Jesus has already overcome!  Do you believe in that…or do you believe that?

My desire for us is that we experience God in a new way this hour, this day, this week, this journey that allows us to know Him like we have never known Him before.  That we – and the crowd of witnesses to our lives - may see Him at work in and through us and stand amazed at what HE has done, so that they too will put their trust in Him!  [Psalm 40:1-3]

God IS who HE says He is…that is why we worship and praise Him alone!

“O Lord, you alone are my hope.  I have trusted you, O Lord, from childhood.

Yes you have been with me from birth; from my mother’s womb you have cared for me.

No wonder I am praising you!” 

[Psalm 71: 5-6, NLT]

Jackson Update: 

Yesterday was a great day of travel!  We left Charlotte around 10am and arrived at the farm, where my dad grew up and my parents plan to retire, located an hour north of Pittsburgh about 8pm.  The kids were awesome…though the only one who slept was Jordyn, who fell asleep the first hour of our trip.  Jackson was awake the entire time, and was so excited because he thought he was going to the beach.  We have a little bit of guilt over that, but as I told Kelly…it would have been a much harder trip if he truly understood the reason for our travel north.

One of the great moments that yesterday held was Jordyn’s prayer at Cracker Barrel over dinner.  After thanking God for a safe trip, she prayed that “daddy would continue to go in the right direction”!  I need all the help I can get…

Today is going to be a day of rest, as tomorrow begins the final stages of preparation with an afternoon appointment at Pittsburgh Children's Hospital with Jackson’s surgical team.  As of this moment…the "battle plan" is as follows:

·        Thursday, June 7:  Heart Cath

• This outpatient procedure is to ensure the strength of the internal structures of his heart, and to provide an internal perspective and wisdom as to the plan of attack.  Jackson has not recovered well from his previous caths, so please cover this procedure in prayer…as God has reminded us to “not look past this”. 

·         Monday, June 11:  The Fontan Surgery

•  This surgery is Jackson’s third open heart surgery in a series of 3.

• Following Jackson’s fetal surgery when Kelly was 21 weeks pregnant, his first open heart surgery took place at Pittsburgh Children’s Hospital when he was 8 days old – where they moved his Aorta from the left ventricle to the right ventricle to begin the re-circulation/re-engineering and complete by-pass of the left side of his heart.  Jackson now only has a functioning right atrium and right ventricle, and no movement or development on the left side of his heart. 

• Jackson’s second open-heart surgery took place at 3 months old, where they connected the return blood from his upper extremities (The Superior Vena Cava) directly to the lungs (Pulmonary Artery), by-passing the heart all together. 

• This surgery will connect the lower extremities (Inferior Vena Cava) directly to the lungs (Pulmonary Artery) – so that in theory, the right ventricle will pump all the blood to the body (which is opposite of a normal functioning heart), with all the return blood by-passing the heart and returning directly to the lungs.  (For all of you who want more detail…here is a link to a good website with pictures http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/)  

• Point of concern:  Overall, Jackson is doing very well and would be “text book”, but an increasing, moderate leak between the right ventricle and atrium at his Tricuspid valve has the doctors very concerned.  The leak at the Tricuspid Valve is due to the extra value and enlarged right atrium, and the surgeon hopes to address it during the Fontan surgery, but will not be able to determine that possibility until they open Jackson’s chest. 

·         June 24 – Goal date for discharge

• Most likely Jackson will recover in the Cardiac ICU at Pittsburgh Children’s Hospital of UPMC for about 1 week following the surgery, and another week on the Cardiac Recovery Floor at Pittsburgh Children’s before discharge.

• But God has surprised us before, and we ask Him for another quick recovery and great healing to get us home as soon as possible!

Prayer Warriors - please know the power of your prayers and the encouragement they are to Kelly and me!

At dinner last night, we were again reminded that God works the impossible through our prayers…check out the caption/story of the soldier behind Jackson’s chair!

(Louis Trupo of Clarksburg, WV a US Marine in World War II, was hit over the heart by a sniper - but the bullet was deflected by his prayer book!)

God is with us!  Remember…when you are walking on water...it’s “All Eyes on Jesus”!