Not Her Real Name

By August 4, 2014Loss

Self-portrait by Ariela

Ariela didn’t want me to use her real name. I’m hoping that if you know her you will “get over it” (one of Ariela’s favorite expressions) and go along with her request. I agreed to change her name. For this blog, her name will be Ariela. It was, in fact, the name we had planned to give her. We wanted to name her after the nymph in the “The Tempest,” our favorite Shakespeare play. And, my father’s name was Albert. Ariela would be named in his memory. Then a few weeks before she was born, Ariel Sharon was in the news making hawkish comments. Gary said he didn’t want his daughter named after a war-monger. I thought his reaction was a bit harsh, but I let him win that one. (Did this set a precedent for the many battles we would have about our daughter? We had a lot to fight about.)

Yes, some of the stories are revealing, maybe too revealing of her and her special needs. But my stories are really about me, my experiences and struggles as a parent.  Her friends said they would help convince her that my stories might help someone else. To ease someone else’s sense of overwhelming loneliness in a world unfriendly to people with disabilities. To relieve the gnawing self-doubt that flood the minds of parents of children with special needs.  When your child is unique, there is no guidebook to tell you what to do.

Though she had been told many times she was an inspiration, Ariela didn’t want that label. She didn’t want to be special, or unique, and certainly not a marvel or miracle. She hated that. She wanted only to be accepted, to fold into the group with everyone else.

The irony is that someone else wrote a story about her that was shared many times across the web and in print. The writer used Ariela’s real name. And, why not? She had no agreement and made no promises. Unlike my stories, the other writer’s piece is entirely flattering. I make no such promises.

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