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Saturday, August 29, 2015

Was Someone Staring?

Another article that wasn't accepted, I share it here.
When my daughter, who has multiple disabilities due to Aicardi Syndrome, was 18 months old and we got her first wheelchair I remember feeling extremely conspicuous.  As far as I was concerned you might just as well paint me bright orange and make me walk down the middle of the street because I felt so very uncomfortable.  I didn’t want us to be noticed; to be stared at.  The physical therapist we were working with was very excited and happy about the chair, I was not.  As time went by we did get stares and those odd looks from passersby, both adult and children.  As my daughter got older and larger, so did her chairs and with each one a little part of me cried because all I wanted was to blend in with the crowd and that was getting harder and harder to do. People were looking. They were looking at us, at her, at me, at her chair.  We were unusual.  Another thing that happened as she got older was that my daughter began making noises.  Not yelling or screaming, more like grunts, groans, moans and the occasional “aaaahhh!”  Then there were noises associated with the seizures.  Always at the worst times, like during silent prayers at church, or when a child had a solo at a school concert.  Now people were really looking!  We didn’t let it stop us.  After all, (I tell myself still), this journey, this life we live, is not about me.  It is about my daughter and her journey through life.  I’m just here to help her along the way.
She is now 22 years old and on our last vacation I had a realization.  If people are staring, I don’t care. I. Don’t. Care.  Really. Another thing: I didn’t notice if anyone stared or not, and if I think about it, I can’t remember that last time I was upset because someone stared at my daughter or me, or all of us together. We go places all the time, the mall, the supermarket, fairs, parks, concerts, anywhere we please. My daughter is still the same as always in looks and noises and all of it. If people are looking I am oblivious to it and that is a nice way to be.  After all, she is a fascinating person.  I find myself staring at her when she is happily watching TV, playing with her bead toy, or just looking up at the trees because she is such a wonder.  With the deficits in her brain, and eyes, and muscle tightness, and seizures it is amazing to see how she is aware of what is around her, who is around her, and interacting with it all.  So perhaps all those times when she was young and I felt like hiding, people were staring because (at least some of them) also saw the wonder of her.  As for the rest?  Well, I guess they must have just been rude and I don’t care.

1 comment:

Anonymous said...

Excellent piece!!