October 15, 2013


My buddy is five.  I think he got the memo because he suddenly seems like such a big kid.  He is able to handle situations better and has this control I never thought he would.  We were at a fair and my buddy was totally into the model trains zooming around a track.  He stood there perfectly still with his hands behind his back just watching and not touching.  Amazing! 

Along with every birthday, comes the memory of the birth.  I wonder how long it will sting.  That disappointment and heartbreaking sadness when we first heard the words Down syndrome.  I read a blog where the author said she wished the doctor who 'discovered' Ds wasn't Dr. Down.  She imagined if his name was Dr. Awesome - your child has Awesome syndrome.  How cool would that be?

My personal mission is to take the sting out of the words Down syndrome.  I don't want anyone in hushed tones saying, "Oh, he has Down syndrome."  I throw the word around everywhere I can.  Big sis uses it all the time in her pretend play.  The kids in my buddy's class know about Down syndrome from the book I sent into school. I love when kids ask me questions.  I give them a straight forward answer.  The more people that my buddy interacts with, the more people won't be freaked out by Down syndrome.

My mother was a Special Ed teacher and worked with kids who had severe cerebral palsy.  I would go into work with her sometimes and see kids who couldn't walk or talk or feed themselves.  My mom would set me up on a bean bag chair and have me read to them.  It's funny.  I have so very few memories of my childhood, but I can picture it perfectly.  I also loved playing on all the physical therapy things they had.  Anyway, my point is, I was less scared of those kids after I got to know them.

Along with every birthday comes another complete blood count, thyroid test, celiac test, etc.  I wait, wondering, worrying, until the results come back.  We have been so very fortunate with my buddy's health.  I NEVER take that for granted.  More than any cognitive delay or speech delay or hard to manage behavior is the fear that he will fall victim to one of the countless health concerns that come along with the extra chromosome.

My buddy has perfected smiling for the camera - even if he moves the instant after he flashes that grin.  He has become gentle with rara (at times) - letting her crawl on top of him and wrestle him without knocking her down.  Whenever he sees big sis in the hallway at school, he runs over to her giving her a full body hug.  He truly lives in the moment, lighting up when something pleases him.  Even without too many words, his personality is huge.  In the swimming pool of life, my buddy jumps off the high dive.

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