Having a Child with Down Syndrome, Part XVI: What Can I Really Expect?

Copyright © 2010, Stephen Hawley, all rights reserved.

This year was special for Alice.  She has been taking ballet classes for more than two years and has been progressing well.  Imagine as an adult learning to dance only 5 years after having a serious stroke, having never danced before.  Also imagine having to do that when it took four of those five years to learn how to walk.  Ballet is both an activity and physical therapy from out point of view.  So much so that we got her ballet instructor to sit in on PT sessions to see what she would need to worry about.  I highly recommend this.

As I said, this year has been special.  This is because Alice was in her first complete ballet as a performer (as opposed to a recital).  She auditioned and got a role as a reindeer.  In her part, at the end of the first act, she and the other reindeer pulled out a sleigh to carry Clara off to the Land of the Sweets.  At the beginning of the second act, the team pulled the sleigh out onstage, prancing all the way.

The most wonderful thing I overheard was from her Aunt who said she couldn’t tell which one was Alice.  For a girl with a pronounced limp, poor control of her right arm, and super low muscle tone, that’s a high compliment.  I watched her and could spot her pretty easily, but she did a terrific job lifting her feet for the prancing.  It was heart warming.

Yet, there from a person with highly critical thought, there is no such thing as a free lunch.  I hadn’t seen the Nutcracker since I was in 4th grade, so it was terrific seeing what I remembered and what I didn’t.  I watched all the parts and tried to imagine Alice as a flower or as one of the children or as a candy cane or gingerbread girl.  I had a very hard time seeing that.  Other children without her challenges are able to move so much faster.  How could she possibly keep up?

Maybe someday she will – I also couldn’t imagine her prancing as a reindeer, so I’m prepared to be wrong, but it doesn’t change the sinking feeling.

On the bright side, Alice really enjoyed the makeup process, especially watching players take off their makeup.  She took a liking to the man who played Mother Ginger and liked helping him take off his makeup.  He was patient and kind.  I found out later, he was Mo Willems, and Mo, if you read this, thanks.