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October 4, 2010

31 for 21:3

If you have never met a person with Down syndrome or a family raising a child with Down syndrome, it is understandable that you may be at a lost for words.

So, to clarify some things (the ones that I can think of for now) are:

  1. Please please please try not to say that our children are angels and a blessing.  Although, you might be sincere, but truthfully, all my children are angels and blessings.  Having Down syndrome does not make you become soft and gentle, always smiling and giving.  Because if that's the case, then Lillian does not have Down syndrome :)  Her brother and sister can vouche for that!
  2. As much as it doesn't make any sense to you, please refer to my child as a child with Down syndrome.  I know that my child has Down syndrome, but she still is a child first (people first language)
  3. Does she have a mild case of Down syndrome?  Ummm...well, mild compared to what?  You either have Down syndrome or not.  Whether she could be high functioning or not, Down syndrome does not come in ranges.
  4. And never ever say, "I'm sorry".  To me it sounds like you think we are living such a poor and  unhappy life.  But, what I've learned from Lillian is that you choose to make your own happiness, and that I could never be sorry for.
So, really all I'm asking is for you to just be happy for me.  Tell me that my children are all so beautiful, smart and kind.  With that, you can't go wrong. 

My life is so good...I can just chill!

4 comments:

  1. Thanks for covering the basics, Sonia!! You nailed it=)

    ReplyDelete
  2. Thanks! Let me know if I missed anything, I'm not perfect :)

    ReplyDelete
  3. THANK YOU for saying that. Man I can relate. I can't count the number of times all of those have happened, probably daily. At the farmers market the other day a women told me "I have four kids but I would trade them all in for one angle Downs baby." I appreciate the enthusiasm but really? All my kids are wonderful.

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  4. No kidding! I try really really hard not to get upset, but it still rubs me the wrong way!

    ReplyDelete

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