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Saturday, September 29, 2012

Diagnosis


Well all that glue in her hair and a 24 hour EEG gave us a diagnosis....of Lennox-Gastaut Syndrome, which to quote is a rare and "devastating" form of childhood epilepsy with a poor prognosis that leads to regression, mental retardation, multiple types of difficult to treat seizures, behavioral disturbances....and the list goes on. When we got home from the hospital Adriana came up to me and said, "You know what song is stuck in my head?  'Do not worry about tomorrow....tomorrow will worry about itself!"  What a timely reminder that all we have is right now and we can choose to believe the best and use our will to rejoice, give thanks, and be at peace with the fact that we don't have to understand everything.

God is bigger than any diagnosis, label, or circumstance after all.  And Esther is more than her multiple seizures and constant care.  She has already taught us so much....how to slow down, be extremely flexible with "our plans," and how to appreciate little things like big hugs, little grunts of delight, and a greater appreciation for all LIFE.  I can't go anywhere these days without seeing kiddos with Down Syndrome, Cerebral Palsy, etc.  In a world where intelligence and beauty are the measure of worth, it takes a different lens to see Jesus in a grunting child covered with drool...but Christ said it's in "the least of these" where He often hides Himself.  I love His hide and seek games because He always lets me find Him!  He has diagnosed us as His "beloved" which is my favorite label of all.  Let your Beloved-ness in Christ trump every other name that may have been slapped on you through the years.  Your Great Physician is also your Bridegroom King and He is an incurable romantic!

11 comments:

Mom Of Many said...

Beautiful baby girl...whose name depicts her essence...regally made in the image of Almighty God!! You are loved by all who have had the privilege of holding you and many who have not. God has written your story and it is perfect!! We love you sweet Esther and we wish we lived closer cause we always miss you!!! Xoxoxoxoxoxoxoxoxoxoxo (one from each currently living at home)

Heather said...

You are so right! No diagnosis changes that she is your daughter and she is loved! God bless you!

Raquel said...

I love the Jesus in you that you shine.

Anonymous said...

Esther is so blessed to have you and your family to shower her with love and affection! What a bright and shining light she is in your home!

Elizabeth said...

Beautiful reminder and perspective! Beautiful girl!! I'm glad you have a diagnosis (even though labels are only so affective) so that hopefully you'll continue to discover ways in which to help Esther.

The Pronks said...

Jenny, I want to give you a word of courage. Our son was diagnosed with Lennox-Gastaut syndrome when he was 4. He is now 14. The prognosis was poor. He could not walk or talk anymore. We had a large stroller so that we could take him a long. The neurologist had to scroll through her computer to find us 10 seconds of normal brain activity.
Now he is 14 and doing really well. If you like, you can check out my blog. I started it after he had a Vagal Nerve Stimulator implanted.
Like you said, God is bigger than any diagnosis! If this is what glorifies God the most, how could we want anything different?
Sometimes, after Jason has a seizure, I ask, "God, how can this be more glorifying to You than if he was 'normal'?" But, I know and trust that God has an amazing plan and is using Jason for the furtherance of His Kingdom. How blessed we are!

The Pronks said...

I want to offer you some encouragement! Jason our son, was diagnosed with Lennox Gastaut syndrome when he was four. He regressed until he couldn't talk anymore. Walking was difficult so we purchased a jogger stroller for special needs kids. Now Jason is 14. He has made incredible progress. At one time the doctor looked at his EEG and had to scroll through to show me 10 seconds of normal. Another time she looked and said, "It's a miracle! We have a normal EEG" Jason still has a lot of seizures, but is doing so well.
Our God is bigger than any diagnosis that a doctor gives. If this glorifies God more than if Jason was 'normal' why would we want anything different? I know that God is using Jason for the extension of His Kingdom! Praise be to our wonderful gracious God who doesn't need us but delights in using us!

Kelli TenHaken said...

Just found your blog and I was so encouraged by it! We have a 4 1/2 year old daughter from Ethiopia and she has Lennox Gastaut syndrome. It was a devastating diagnosis at first, but God has been faithful and we have a lot of peace now. Ruby is an incredible blessing in our lives as it looks like Esther is in yours. So glad I found your story! Thanks!
Our blog is kelliandmarktenhaken.blogspot.com if you are interested :)

Janet said...

like the new look of your blog! Praying for you and your precious treasures! Janet

Janna said...

Sweet words to my weary mama heart. I too have a Ugandan princess who grunts and is covered in drool, and I needed this perspective adjustment today. :) Thank you! God's abundant grace is so very evident in your sweet family!

Heidi said...

Tears here. Powerful words. We are a "big family", have two Ugandan kiddos, and I think we may live close to you. I would love to be in touch. spore@fctc.coop