Wednesday, February 6, 2013

Our Lives have Changed

One year ago, our lives drastically changed when we heard for the first time the words Chiari Malformation.  Our youngest daughter, Ashlyn, was 19 months old and she went in for a MRI due to some developmental delays and favoring of one side of her body.  We were thinking that MAYBE she had a stroke or brain hemorrhage when she was born, but we were shocked to find out differently.

I will always remember the moment I received the phone call from the doctor with the devastating news about Ashlyn.  I was at work and I ran to the office so I could hear the nurse as she spoke.  Tears rolled down my face as I didn't know exactly what the words Chiari Malformation meant other than my daughter had a malformation in her brain and she was being referred to a neurologist and a neurosurgeon.  I remember trying to take notes with my shaky hand as the nurse spelled out Chiari Malformation.  I also spelled out INCURABLE.  I remember trying to phone my husband and explain between sobs the results of Ashlyn's MRI.  I remember calling our families with the devastating news.  I remember coming home to see tears streaming down my husband's face.

Since this day, we have spent many hours at doctor's offices, at various appointments, at more MRI's, physical therapy sessions, occupational therapy sessions, and of course brain surgery.  We have spent many hours in prayer.  We have spent many hours crying.  We have spent countless hours rejoicing.

Ashlyn continues to be our little miracle as she fights this incurable brain malformation.  She is doing AMAZING and no one would ever be able to guess that she had brain surgery.  She continues to grow and develop and amaze us with her contagious laughter and personality.

To follow more of Ashlyn's journey with Chiari Malformation, please read my other blog Chiari Hope.