It All Comes Down to One Thing

My emotions have run the gamut this past week as we face the anniversaries of Ellie Kate's last days with us. I can't help but remember all of those moments; the feelings that come along with them return to my heart and it's often been overwhelming. I'm glad though - because it means that I love my daughter fiercely, recklessly, with all that I am.  I want to feel these things so deeply.  I know many of you won't understand that, but those of you who have lost a close loved one certainly will.  

I've felt a lot of anger this weekend.  Lucy's been crying almost non-stop because of another virus she has contracted (NKH compromises your immune system so Lucy can catch the strangest things really easily).  I had to take her to OU Children's on Friday, the exact same place we were two years ago with Ellie Kate.  Why, Lord?  Why would you have us there during the same time when my heart is hurting so?  Lucy's crying has our nerves shot and I just became so angry with our lot in life.  Why does this stupid disease have to be in our family?  Why did Ellie Kate have to die?  Why does Lucy have to be so uncomfortable?  Can't you give her relief, Lord?  Won't you give our boys relief? Why do you allow this - this madness that hurts us so deeply and that brings so much stress to everyday life?  I went to bed with hot tears, frustrated and angry.    

Thankfully I woke up refreshed, although still feeling the sadness of memories and feelings that pop in and out unexpectedly (these things will take your breathe away and knock you to your knees).  The children performed a short Christmas program today at church, which took our minds off of things.  Conner carried in a banner that he had made, with a name of God on it (He chose YAHWEH). Little Lucy was an angel and was placed on the very front row next to two precious girls who took care of her the entire time.  It was sweet to watch these little girls, around 4-5 years old, patting Lucy and handing her the "chewy" during the songs.  It was a welcomed happiness that filled our weary hearts and we truly were so uplifted, hearing these children sing about the absolutely amazing Truth that our perfect God sent His perfect Son to this imperfect earth.  Christmas - celebrating the time that Jesus came to earth to redeem mankind in every possible way.  The children were SO full of joy!  If only we could see things so simply and understand the gravity of God's Most Perfect Gift. 

Lucy loved being with all of the kids!

Ellie Kate during her Christmas Program in 2010

Pastor Sam spoke about why God sent His Son to earth.  It isn't just so we would have eternal life.  Did you know that?  It's so that we would experience ALL of God here on earth.  We miss out on so much if we think that Salvation is only about being saved from Hell.  There is just so much more for the life of the Believer.  The "more" is the presence of God; feeling, seeing and hearing Him move in the world, in the lives of others, and in your own life.  It's so much more, and that "more" is the reason I can survive and get through this season.  The "more" is how I can love others recklessly.  The "more" makes it worth it all.  

John 3:16, "For God so loved the world that He gave His only son; that whoever believes in Him should not perish but have everlasting life."

John 17:3, "And this is eternal life, that they may know You, the only True God, and Jesus Christ whom You have sent.  

God’s love for us is not mainly His making much of us, but His giving us the ability to enjoy making much of Him forever. - John Piper

It's SO MUCH MORE . . . 

"All of life comes down
To just one thing
And that's to know You oh Jesus
And make You known"
- One Thing, by Charlie Hall

This was our prayer from the beginning; from the very moment of our Union as a couple before God.  Friends, it is still our prayer.  It is still my prayer.  This journey, NKH, PANDAS, death, heartaches, ups and downs, sharing it all with you along the way . . . it's worth it all if I point you to Jesus.  It's worth it all if somehow, through what we've been through, you see that salvation is so much more than only being "saved" from an eternal separation with God.  It's worth it all if somehow, through our messy life and all of our short-falls, you see that God wants so much more for you - He wants you to know Him personally and He wants you to experience every part of Him.  He is Peace.  He is Love.  He is our Joy.  He is our Provider.  He is our Healer. He is Truth. He is our Abba, our Daddy-God.  His Word is alive and you can experience it's fullness as a Believer.  

Oh, Father!  Thank you for sending your Son in human flesh!  What an incredible sacrifice for the Creator of the universe, to send His perfect Son to a world that would completely reject Him in every possible way.  But you reached out in love, Lord.  You reached out, even though you knew we would fight you and run from you.  We are worth it to you, and I'm so humbled by that.  Thank you for this priceless gift.  

Lord, bring your Joy to our hearts - the joy that can only come from knowing you personally.  Truly, all of life comes down to knowing you and making you known.  Let that be true in our lives.  Thank you for using us in spite of our failures.  Thank you for using our sorrows for your glory.  Thank you for drawing others to your side through the faithfulness of God that they have seen in our journey.  Thank you that, in the midst of suffering and heartache, I can have joy in celebrating the most amazing Gift the world has ever known - JESUS.  
-Ryan

*REMINDER!
Tuesday the 23rd is Ellie Kate's "Heaven Day"!  We would love for you to remember Our Girl by releasing balloons in her honor.  We ask too that you would send us pictures of your balloon releases as they will undoubtedly breathe life into our weary souls!  I cannot wait to see your photos!  Thank you in advance for loving Ellie Kate and our family in this way.  I will be so sad when this Month of Reckless Love is Over!  

All for His Glory

God causes ALL things to work for His glory.  Not only that, but for those who trust Jesus as their Lord and Savior, God uses ALL things for our good.  

Think about that for a little bit . . . the God of the Universe is intimately involved in every.single.aspect of your life, Believer. And He is working it for YOUR good because He loves you so very much.  And He will get all of the glory!  


Here's the infallible Truth to back this up: 

Romans 8:28
 "And we know that for those who love God all things work together for good, for those who are called according to his purpose". (ESV)

And - 

I Peter 1:6-7 
 "In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ". (ESV)

With Lucy sick, with me missing Ellie Kate, with so many friends hurting, with the earthly death of Ellie's friend Jessica, with the decline in my friend Jenni's health (due to aggressive cancer) . . . well, I've just been thinking a lot about hardships and trials.  And Jesus has quickly and gently reminded me that He's got it all under control.  

Friends, it doesn't always look the way we want it to; I would dare say that most of the time, life doesn't look the way that we hoped or dreamed!  And, even though we may pray, do the right things, seek the Lord, give Him the glory through our trials, etc - even though all of this may be true, God still might not answer our prayers the way that we want.  It still hurts.  Life hurts.  Physical and mental illness occur.  Loss occurs.  Betrayal, hurt, financial set-backs, troubles at work - it's all a part of our broken, fallen, hurting, sickly world.  It makes me long for Heaven!!  

As those who love the Lord Jesus, we have to remind ourselves of the truths listed above.  And there are SO many other similar Scriptures I could list!  He LOVES us.  He uses our lives, our weaknesses, our past sins, our accomplishments, our ILLNESSES for our good and for His glory, and we may not understand it this side of Heaven.  

And now, the personal stuff - 
Lucy has been really sick.  It's been several months of screaming, of testing, of doctors appointments.  Our girl has been poked and prodded, and we never have come to an answer.  On Sunday, Lucy had one of her VERY worst days.  Really and truly, it was the one of the hardest days of her life.  She was screaming in pain NON-STOP.  No meds would help.  No position would help.  Rocking, music, driving, singing, walking, pain meds, anxiety meds - nothing would help, and we felt hopeless. It was heartbreaking.  

We took Lucy to the doctor yesterday and had two appointments.  They looked her over really well, but didn't come to any conclusions.  This morning, she started running her very first fever.  Really!  It was the very first fever she's ever had and it rose super quickly.  I knew something was wrong as she was lethargic, seizing and had a very high fever.  I took her to the ER.  

Turns out Lucy has a bad UTI.  Other things are up in the air right now, so we are waiting for lab results.  The doctors let us come home after tests, fluids and IV antibiotics.  We will do antibiotics at home and watch her closely.  As of this evening, she still has a fever.  Please pray for our girl.  

Also, as I mentioned above, my precious friend Jenni is struggling for her life.  Her battle is ending, according to doctors, but we know that God CAN heal her completely this side of Heaven (as her daddy says).  Would you pray for Jenni and her husband Heath?  Pray that God would prepare their hearts for what He has planned.  Pray for their seven young children, that they would be surrounded in peace that passes all understanding.  And pray for the rest of their family who is longing to see God move on Jenni's behalf.  

May the truths shared tonight resonate with your heart, Sweet One.  Jesus, thank you that your actions aren't based on MY actions!  Thank you that it isn't up to me, up to us.  Thank you that it's not my faith that makes you move mountains, because my faith is so small! Thank you that you don't move because of my actions or "goodness".  You move as you see fit, for our good and for your glory.  

Glory to the Father, Son and Holy Spirit!
Ryan