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Friday, January 11, 2013

This one's broken.

"The world breaks everyone, and afterward, some are strong at the broken places." -Ernest Hemingway

The geneticist we saw was a large, friendly woman with a warm smile and a gentle nature. I was not quite as nervous when she asked if she could now perform a physical examination of Oli.  I thought, "This woman is so nice she can't possibly give me any more bad news."

She started examining every inch of Oli's little body and then offering phrases to her assistant.  I was listening intently as she rattled off terminology to describe my Oli for her chart. Terminology that I was familiar with. I was starting to think that this woman wasn't so nice.
Extremely small eye sockets characteristic of microphthalmia and anophthalmia, hypotonia exhibited in all major muscles, microcephaly, congenital mid line defect,  dysmorphic facial features. 
These words cut me to my core and left a painful gaping hole in my heart.
Dysmorphic facial features.
What? Are you trying to hurt my feelings?
I felt like someone had punched me in the stomach.  How could she describe my beautiful daughter as dysmorphic?
Hypotonia in all major muscles.
So what if she was a little weaker than other babies? She could still catch up and get stronger.
Congenital mid line defect.
Mid line defect refers to the abnormalities associated with the fact that the neural tube failed to close properly when the baby was developing during the first trimester of pregnancy.
I hate that term. Mid line defect. I guess because it has the word defect in it and in turn implies that my girl was born defective.  Like some sort of toy or kitchen gadget that fails to work properly when you plug it in.  I couldn't just return my girl to the factory and demand a refund.  I couldn't look at God and say "Sorry. This one's broken. Send me a new one."
Satisfaction is not guaranteed with children and I refuse to view my daughter as defective.
I told you I was sensitive.
She has an unusually small head.  I pointed out to the doctor that I seem to also have a small head.  I told her that I was able to wear my 9 year old step daughter's bike helmet. Although, my husband has a huge melon (sorry honey) and I would think that between the two of us it would have balanced her out genetically.
She explained that while Oli was probably prone to having a smaller head because of me,  it was more than that. Oli's head measured below the 5th percentile on the growth chart.
What does that mean in terms of her development?
It can mean any number of things. She could develop normally or it could mean some mental retardation.  Usually with microcephaly we tend to see some form of MR.
That was when the fear for Oli's future really took hold.  I was already terrified of her facing the world without any sight but, now I had to think about her learning capacities as well. 
Combined with all of the other things we had learned about her, it was starting to look like my girl was not just blind.

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