Silent – Day 26

by Jen on January 30, 2011

I still can’t talk, blah, blah, blah.  Not important.  What is important is my Silent Supporter for today.  Those of you who know me in my real life have most likely already met Kyle, but if you haven’t, I want to introduce you.
Kyle is a guy you notice in public.  He is 26.  He’s 6′ tall.  He weighs about 305 pounds.  He is immaculately dressed from head to toe.  He wears crisply pressed, bright shirts with matching Kangol hats over his bald head.  His large wrist is never without a timepiece, and you can ALWAYS smell his faint cologne.  He is dapper and fabulous.  And, he carries a stuffed Curious George, affectionately referred to as his “Nemo Monkey”.  
Kyle is severely autistic.  And severely epileptic.  Amanda, my very dear friend, is Kyle’s sister and legal guardian. She’s raised him for many years, bathing him, shaving him, dressing him, helping him in the bathroom, taking him to school, fundraising for his school – doing everything (and more) that a parent of a special needs child does.  I don’t think it’s really necessary to sing her praises.  And she certainly isn’t looking for credit.  Rather, it is her privilege to spend this time with him.  
Their relationship is complex.  She is his sister first, but he is her child.  The lines blur and are indistinguishable most of the time, but their bond is evident, and it is often difficult to decipher which one of them relies on the other more.  Kyle is relatively non-verbal, leaving Amanda to skillfully translate his wants and needs.  He is able to mimic words and phrases, and can even sing a few songs.  He will always sing to me, and then applaud his own song when he is finished, which is my favorite thing about him.  And after spending a little time with him, it becomes easier to detect his moods, and determine agitation from excitement or anger from concentration.  
I could watch him for hours.  He tells such a story.  His body and face are scarred from a number of surgeries and injuries sustained from epileptic falls, yet he is flawless and adorable.  I am in love with the facial expressions of a four year old that seep through his 26 year old face.  I see the flickers in his eyes that won’t transmit to his mouth and I am frustrated for him.  I want to help him escape the bio-neurological shackles that keep him from saying the things I know he wants to say.  And I realize then that bathing him, shaving him, dressing him, and being his parent isn’t the hard part.  Not being able to fix him is.
So, getting support for my minor, teensy tiny, piddly, little temporary disability from a man with such challenges in his life makes my pity party seem pretty lame.  His picture makes me happy beyond belief.  I love you, Kyle! 
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{ 4 comments… read them below or add one }

1 Anonymous January 30, 2011 at 5:57 pm

You are right Amanda is amazing. But then she has sister love showing with everthing she does.

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2 I AM ... Chance January 31, 2011 at 10:23 am

Kyle is adorable and sweet… and he is always "hoppy"! But one day he's going stop repeating the phrases you and Shayna make him say and giving u guys kisses… WHO AM I KIDDING… NO HE WONT lol :)And Amanda is a great sister if it was Shayna… she would've left my butt a long time ago!

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3 Andrea (ace1028) January 31, 2011 at 11:55 am

Beautiful post. Kyle is lucky to have his sister, and she is lucky to have him, as well.

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4 Jennifer Bruno February 2, 2011 at 7:41 pm

Thanks guys! Shante – Who are you kidding?!?!?! Shayna has no idea she's not your mother. She'd breastfeed you if you'd allow it. I swear.

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