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World Down Syndrome Day…

20 Mar

So, tomorrow is World Down Syndrome Day.  It is on March 21 (3-21), because having a diagnosis of Down syndrome, or Trisomy 21, constitutes having 3 of the 21st chromosome.

When I found out that World Down Syndrome Day was coming up, I can’t describe to you the feelings and emotions that I had.

There was a large part of me that wanted to recognize the day in some significant way; to shout it from the rooftops, to make everyone aware and a little more informed.  I wanted to let people know that my life, with a child who has Down syndrome, is AWESOME!!  That I love Jake to death, and that life with a diagnosis of Down syndrome looks surprisingly like life with a typical child.

There was another part of me that didn’t want to do anything; knowing that my child is not defined by his diagnosis, and never will be.  To me, Jake is just Jake.  He is my kid.  I love him.  I want to help him grow and learn and love.  I don’t look at my child and see his diagnosis.  I look at Jake, and I see Jake…pure and simple.

I watched a video about the upcoming day on YouTube, and I bawled, because I found it to be so fitting, and so true.  The video is parents’ reactions and thoughts on their children with Down syndrome, and it is amazing how true those statements are.  Here is the link:

If you have a chance, you should watch it.  I also posted it to my facebook, so if you are on facebook you can watch it there.

In other news (and I will expand on this more in another post), the hearing issues are getting resolved!  Finally:)  We met with an audiologist at the Children’s Hospital yesterday, and it seems we have a plan!  The long-term goal is to put tubes in Jake’s ears, drain the fluid that is in there, and let him hear on his own.  The short-term plan is to give him a headband hearing device in the meantime, for a few months, until his ears grow big enough to give him actual hearing aids, which will tide him over until his ears grow big enough for surgery and tubes!  My word, my child has small ears!!

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3 Comments

Posted by on March 20, 2012 in Uncategorized

 

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3 responses to “World Down Syndrome Day…

  1. Dianne

    March 20, 2012 at 8:29 pm

    Thanks for sharing your thoughts and your heart, Karyn.

     
  2. Laura

    March 28, 2012 at 8:06 pm

    Happy belated WDSD Jake!

     
  3. Catherine

    April 6, 2012 at 6:53 am

    That’s beautiful, Karyn.

     

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