Diagnosis Day

To many people, December 8th may be just another day in the busy holiday season.  To me, and my family, however, December 8th will forever be  a day that changed our lives.

December 8th is Diagnosis Day.

I remember it like it was yesterday.  It was a Tuesday afternoon, and I had just gotten my hair cut.  After leaving the salon, I hopped back into my car and, per usual, quickly checked my email to see if I needed to respond to any urgent work matters.  There, in my inbox, was a message from the Hindbrain Malformation Research Program at the University of Washington,  You see, just days before I had sent them all of Ryker's MRI images for a second opinion, since our first opinion showed abnormalities of the brain, but the doctors ultimately weren't concerned and rather said let's just "wait and see."  My stomach sank, and the world around me paused.  Nervously, I opened the email, and there I read the words "Ryker has Joubert Syndrome."

I cried.

Then I cried some more.

I didn't know how to process this information, so I decided at that point I would drive straight to Ryker, who, at that time, was being watched by my mom.

I wiped away my tears, put on a happy face, and approached the door to my parent's house.  I thought I would be able to pretend that everything was okay, but as soon as my mom opened the door, she knew.  I shared the diagnosis, and together we cried.  I wish I could say I was brave, and bold, and knew exactly what to do in that moment, but I was none of those things and I had no idea what to do.

Moments later, I sat with Ryker in my lap and I called the head researcher at the University of Washington to talk through what a diagnosis of Joubert Syndrome meant (I even had to ask how to pronounce "Joubert"!).  It was overwhelming and it was scary.  I started gathering as much information as possible, and planning our next steps.  After talking with the team in Washington, I called our neurologist in Des Moines and shared our diagnosis with him, and scheduled our next neurology appointment.  Within an hour, I had plans for our next steps, but I was numb.

Later that evening, Adam and I talked, and I realized that the two of us were processing the diagnosis a bit differently.  While I was sad and trying to research next steps, Adam was angry.  I was the one who had researched the University of Washington and I knew their expertise, to Adam they were outsiders who didn't know our son.  We sat in silence, both holding our own fears for the future of our son, and we came together in prayer.  We prayed for healing, we prayed for answers, and we prayed that the Lord's will would be done.

Fast forward 4 years, and December 8th is a day of celebration.

Today we celebrate Ryker and all he has accomplished.  The fears I had within me on December 8, 2015 are gone.  My faith is stronger, our family is stronger.  

Are there still unknowns?  Yes.

Do I have continued concerns for Ryker's health? Yes.

Have I seen Ryker disprove everything we were told on December 8th? Yes.

I wish I could go back in time and tell past Kasey "everything will be okay."  I wish I could say "HAVE FAITH!"  Or perhaps even, "You have faith, now BELIEVE it to be TRUE!"  For now, I hope this message reaches someone who may find himself or herself in the same position I was in four years ago.  You may not have the answers now, but I can assure you, everything will be okay.  It won't always be easy, nothing ever is, but if you allow yourself to see the good in different situations and if you put your faith in God and actually TRUST him, then you will find yourself on an unbelievable, amazing  journey. 

The journey is FOR you.  The journey isn't happening to you.  Enjoy it, grow from it, use it. 

December 8, 2015 - Our Lives Will Never Be the Same!

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"The Lord will guide you always;
    he will satisfy your needs in a sun-scorched land
    and will strengthen your frame.
You will be like a well-watered garden,
    like a spring whose waters never fail."
Isaiah 58:11