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Sunday, January 13, 2013

A dark and lonely road

“The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared.”
Lois Lowry, The Giver

As we left the doctor’s office I picked up my sweet baby Oli. I picked her up amongst all of the questions and uncertainty that surrounded her.  I held the top of her head to my face and inhaled the smell of fear that came with her.

Oh Oli, what am I going to do?  How am I going to get through this?

We drove back home and again the isolation of that house surrounded me.  Oli was three months old now and it was time for me to go back to work.  I desperately needed to get out of that house, but at the same time I was afraid to leave her.  She had become my whole world.  Every moment had been consumed with thoughts about her blindness and how I was supposed to help her.  Every night I was scouring the internet for information on how to raise a blind child.  I had even purchased a few books, seeming to be about a 100 years old

There should be more updated books on this subject. If the child on the cover is sporting extremely short cotton shorts and his mom has the feathered Farrah Fawcett hair, the book is probably a little bit dated.

However old, these books accompanied me to my first day back to work.  I sat at the table in the break room with a strong cup of coffee and my feet propped up on a chair reading this musty smelling book.  Topics included: how to encourage your blind child to crawl, encouraging your child to explore their environment, the importance of providing your blind child opportunities to touch different types of textures.  I sat there reading this book while my co-workers chatted and laughed around me.

I was no longer one of them. 
Could they see the pain in my eyes as I tried to laugh with them?  Could they hear my heart breaking when I stopped to look at recent photographs of their children tapped to their lockers?  Did they notice my annoyance when they tried to talk to me about mundane things? 

I wanted to shout, “Didn’t you hear? My child was born without eyes! Why are you afraid to ask me about her?  Why are you so scared to congratulate me?”

Not all, but a lot of people at work simply ignored the elephant in the room and said nothing.  This hurt more deeply than being asked what I had shoved into her eyes.  I wanted someone to acknowledge my pain.  I wanted someone to take me by the hand, lead me away from the isolettes and ventilators and just hug me.  Feel my pain with me. Cry with me.

As my break ended, I closed the book and silently walked back into the NICU.  I peeked under the blanket of a tiny preemie lying in her bed.  Born addicted to drugs, this tiny baby was screaming in discomfort.  Her mother was nowhere to be found. 

Didn’t this mother understand what a precious gift a healthy baby was?  Didn’t she appreciate that she had somehow drawn a lucky card in the genetics department and had given birth to a baby without a disability?  Why would she damage her child by doing drugs during her pregnancy? Did she have any idea how much I would have given for my girl to be born without complications?

I was beginning to get even angrier. 
This was a very dark and lonely road that I chose to travel down.

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