Wednesday, August 26, 2015

My Daughter Has Chiari

July 20, 2015 is one of those days that I will never forget.  The morning started out so well and full of promise.  My dearest best friend, her husband, and their sweet one year old boy were actually spending the weekend with us.  We had just finished up breakfast when I received a message that I had a new test result in my daughter’s my chart account.  In the two weeks that had followed this day my sweet daughter had a number of blood tests, met with physicians, and had even had an MRI due to unexplained weight loss and lack of desire to eat. 

I quickly signed on and scanned through her most recent MRI test results.  Then the bad words started to pop out at me like: anomaly, decrease CSF, less than expected for age, etc.  All of the sudden my heart sank and I frantically wanted to talk to a doctor.  As I continued reading I found the words that would take my world and shake it upside down. 

Chiari One

I frantically hit print and raced to find my husband.  He was about to leave to take our son to swim lessons.  I stopped him as I tried to compose myself and said, “Call your Dad.  I want to know what this means.  I know it’s bad but I want to know how bad.”  You see God in His sweet sovereignty had given me a father-in-law who just happened to be a practicing physician in Arkansas.  Thankfully he was able to talk with us and we later spoke with our pediatrician that afternoon.    We learned that our happy, seemingly healthy looking daughter had something wrong in her brain.  Not a broken bone, not a bad virus or RSV again, but something inside her sweet head. 

Although it is supposedly very common I had never heard the word Chiari (pronounced kee-AHR-ee).  A Chiari one malformation is where the back of the brain (cerebellum) goes down below the base of the skull and into the upper spinal canal.  It is not cancer but it is scary.  Young children with Chiari experience trouble feeding, abnormal breathing, and headaches among other things.  The best treatment is surgery to make more space for the brain and spinal cord.  

The past few weeks have been incredibly difficult.   I think I have written this post at least ten times in my mind.  What words can do justice when your heart is breaking?  In so many ways it truly does not seem possible.  How could my happy girl have something wrong with her brain?  Right now I think we are living between shock and denial.  I wonder what is going to happen to Eva right now.  Will she have surgery on her precious head?  How in the world are we going to get her to eat? 

There are many days when things feel quite overwhelming but I am so thankful for the grace of God that continues to pour down on us.  Personally for me one of the hardest things to swallow is really thinking about the future and what Eva’s life will look like.  No matter what happens our family is strong because we trust in a God who knew exactly that chiari would enter our world.  He also ordained that we would move here to our current ministry where we live less than an hour from one of the best children’s hospitals in America.  My prayer through everything is that our entire family will be able to say with the Psalmist in Psalm 91:2, “I will say to the Lord, My refuge and my fortress, my God, in whom I trust.” 

Right now my life is crazy.  My week is filled with two to three therapy appointments per week not to mention numerous visits to specialists, telephone calls, keeping a meticulous food diary, and trying to manage everything else in our lives.  Our big appointment takes place in September in just a few short weeks where we find out if the neurosurgeons at Cincinnati Children’s Hospital think my sweet Eva needs to have surgery now or if they will postpone it for a few years.  We do covet your prayers knowing that a God who can raise the dead can also heal our sweet girl.  We just don’t know if God will choose to heal Eva through the skilled hands of the team at Cincinnati Children’s. 

I am planning on writing regular updates on our blog about our daughter’s progress.  Not only is this an incredibly emotional journey but I have not been able to find much on the internet for a seemingly common brain malformation.  I know for myself that I would love to read through the story of someone else’s journey through Chiari and feeding issues. 

For now let me leave you with a quote from Sarah Edwards to her daughter Esther right after Sarah’s husband Jonathan Edwards and her son-in-law died within two weeks of one another:

“My very dear child, What shall I say?  A holy and good God has covered us with a dark cloud.  O that we may kiss the rod, and lay our hands upon our mouths!  The Lord has done it.  He has made me adore his goodness, that we had him so long.  But my God lives, and he has my heart.  O what a legacy my husband, and your father, has left us!  We are all given to God; and there I am, and love to be.” 

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