optic nerve hypoplasia, miracles and gratitude

by jani on November 21, 2012

What do you do when one of your baby twin daughters just doesn’t appear to see you? Or if she does, her eyes go way up, leaving quite a bit of white underneath. I knew when our girls were three weeks old that something was wrong with our firstborn twin. She just never seemed to be able to focus on me, while her twin was spitting bubbles and trying to smile and coo as she looked directly on my face. Yes, there was a definite difference between the two. I made the appointment with our babies’ doctor. He couldn’t see anything wrong, but he took my word for it (don’t you just love doctors that will really listen to the mom?)  He made the call to the number one pediatric opthalmologist in Utah to set up a consult.

I’ll never forget that day… walking in with our one little baby girl, feeling more than a bit concerned. After the doctor checked her, he said, “She has optic nerve hypoplasia.” I asked,”Well, does that mean she’ll need to wear glasses throughout her life?” The doctor’s reply (I’ll never forget what he said to me next), “Don’t be so vain, Mother! Your daughter has  irreversible damage to her optic nerve, which took place sometime during your first trimester”.

My head was beginning to spin. He handed me a card with the contact information for the Utah School for the Deaf and the Blind.  I needed to contact them; they would help our family adjust.

I was numb. I didn’t start crying (more like sobbing),  until I was far away from this doctor’s office. But I did pour out my heart to my sweet HB the whole way home. What would you do? Make the call to the school the next morning? Not me. It took me two weeks to face the reality and build up my nerve. But I finally made the call. A therapist from the school was just a marvelous and compassionate woman. She scheduled a visit to our home, requesting that our entire family be present. She explained the partial blindness in terms that we could all understand and then had each of us try on a pair of goggles that looked like we were looking through Swiss cheese. She explained that with our daughter – their baby sister –  she had found her clear sight of vision  through looking up… that her irises would always be positioned on the upper part of her eyes with the lower half of her eyes completely white. She then went on to explain that our daughter would likely be unable to drive and that her life would be altered because of her disability.  But they would send a therapist to our home weekly until she was old enough to attend their school.

This is a photo of our twins, one of whom was focusing normally. It’s apparent which one had the dark, blank stare and partial blindness.

What would you do? Pray for a miracle? I’ve seen miracles throughout my life… but this? Was it asking too much from God to heal our baby girl? I don’t know why some receive the answered miracle they seek, while others don’t. It’s certainly not from lack of faith. Why did I have four miscarriages? Why do bad things happen to good people and vice versa? I don’t have the answers to all these questions. What I do know is we desired and prayed for a blessing –  a miracle – and in our daughter’s case we received one.

I remember that second visit back to the opthalmologist as he said, “I don’t know how to explain this! She doesn’t appear to have optic nerve hypoplasia. But, that’s impossible!”. Our reply was simply, “No it’s not, Doctor –  because she received a blessing from God!”

Our daughter has beautiful doe-like eyes with lashes that touch her eyebrows. They have always been filled with a sparkle and joy every time she smiles!

So in this month of November, when we all express our gratitude for the blessings we receive, this miracle is right up there at the top! Our daughter is now a grown, married woman. This experience has helped me to see… really see – the beauty that surrounds me in my daily life just a little bit differently, so often thinking back on those moments and realizing the marvelous wonder of the gift of sight!

This Thanksgiving what will you be adding to you list of thanks? Mine is well past 100…how about your list?