Life's Surprise Turn - The Beginning

How It All Began

It was a normal Tuesday.  The kids were at school.  My husband and I were both working.  I was in a meeting when I saw my phone ring and the number on the caller ID was my daughter's school.  That's never a good sign, right?!   That moment is when our life took a surprise turn.

My oldest daughter was a healthy, active 5th grader.  The school nurse called on that normal Tuesday, to tell me that my daughter came to the school clinic complaining that there was a problem with her vision.  When my daughter looked at her class assignment, she realized there were sections she couldn't see.  I knew in my gut that something was very wrong.

We went to our local hospital emergency room.  They did a CT scan and didn't see anything unusual.  The hospital discharged her, but as we were walking down the hall to leave, my daughter vomited.  That totally gross, but divine intervention, bought her an overnight ticket into the hospital, which thankfully ended up saving her vision.

I asked some more questions that night and the doctors decided to do an MRI.  That's where they discovered that my daughter had inflammation in her brain.  The inflammation was causing a loss of her peripheral vision and needed to be treated right away.  The next morning we were transferred to a major children's hospital, and she was treated with 5 days of IV steroids.

The next few months were bumpy.  She experienced two seizures, vision that improved and then worsened again, a host of other symptoms, as well as several more hospital stays.  Eventually we were transferred to another major hospital.  There the doctor's were able to diagnosis my daughter with a rare autoimmune disease called Neuromyelitis Optica Spectrum Disorder (often called NMO).

NMO has taken our life on a surprise turn, but we are rolling with it.  We have learned a lot through this process and continue to learn more everyday.  A year out from her diagnosis, I truly believe that now we need to share.  Knowledge is ever changing, but knowledge should not be hidden under a basket for only a few to see.  It should be shared.  I am by no means an expert, but I am going to use this blog to share the lessons I have learned in the hope that they will help others.

One of my daughter's favorite flower deliveries from that first trip to the hospital.

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