Thursday, October 28, 2010

Down syndrome Awareness Answers.

It's cool outside, but the sun is shining.
The coffee is hot, and the peanut M&M's are disappearing.
I am snuggling in for an afternoon of answering your questions about Down syndrome.
About Ella.
About our life together.
Did you know she had Down's Syndrome before she was born? 
What was your reaction when you found out?
I did know we were having a girl. I knew her name would be Ella Corinne. And I knew that God had something very special in mind for her life. I did not know she would have Down syndrome.  There is much more that I could say here. And in time, I will write Ella's birth story. My initial reaction was one of unbelief and devastation. I spent many hours crying on a day that was suppose to be the happiest day of my life.

Are there different kinds of Down Syndrome or different levels of severity? If so, what kind does Ella have? 
There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism. Ella has Standard Trisomy 21, which is the most common. The National Down Syndrome Soceity says this in relation to severity:
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
What sorts of things have people said to you (well meaning) that just end up hurting your feelings? And are there things that people say that are actually offensive to you (well meaning or not...)
The word "normal" is hard for me to hear. Talia is normal and Ella is...not normal???
Talia is a typically developing kid, Ella has Down syndrome.

What is actually offensive to me? When people call themselves or anyone else a "retard" or use the word "retarded" as a slang word. There isn't an ounce of love or respect in it. I cannot NOT hear it when the person being devalued is my Lady Ella.
How do you explain Down Syndrome to Talia?
I haven't explained Down syndrome to Talia. Ella has been a part of Talia's life since before she was born. Since she was two and a half she has noticed people with Down syndrome in books and on TV and said, "Hey, she looks like Ella!" Given Talia's gift for conversation, I would imagine there will be many many words in the future in regards to her relationship with Ella.
Here is a snippet from yesterday:
Me: Did you know that Ella has Down syndrome? 
T: (laughing) Yes.
Me: Do you know what Down syndrome means?
T: Yes, it means Ella goes to the doctor a lot.
Me: Well, yes, I guess we do go to the doctor a lot.
T: (face beaming) Oh, I know! It means that she's the best!
Me: (teary) Yes, I am so glad that's what it means to you. You're absolutely right!
And on that note, I think that's a great place to end...for today. It makes me teary, even now.
I will post the rest of the questions and my answers to them at the end of next week. I realize that we will be into November by then, but I figured you'd be cool with a little awareness talk even if it wasn't October. :)


  1. I love that picture of Ella as a baby. I could eat her up seriously.

    Thanks for your heartfelt gut level honesty on this one. I'm already anticipating the second edition.

    Love you!

  2. Thanks for sharing this with all of us! You have two very beautiful daughters!

  3. I can't even imagine how tough this was to write. Thanks for sharing so honestly.
    Thanks also for reminding me how darling Ella was in her glasses. And I absolutely love Talia's answer!

  4. Beautiful post! Can't wait for the sequel... Much love to you and your family!

  5. Kimberlee, I love all your blog posts but this one is above all my favorite! I enjoy learning more about you and your precious daughters and thank God for the MANY ways He has blessed your family! I too, am looking forward to reading the sequel! I love you and I love Ella and Talia (Bruce too)!!

  6. Great post, Kimberlee!
    You got yourself two very special girls!
    And they got themselves two very special parents!

  7. thanks for sharing this. i can't imagine it was easy, but i love that you did it for miss ella, to spread awareness.

    and yes, way to end on a teary note! what a precious, genuine conversation.

    ps- did they see the safari pictures? ;)

  8. Can i fall any more in love with your girlies!?!?!! Proud of you for walking this road...i know, it's not like we always have a choice, but you're going there and your life will not be the same because of it! Love you so very much!

  9. i loved these answers. honest, truthful, heartfelt--no other way to describe them, or you, for that matter.

    good job. :)
    i'm here if you need me.

  10. The post is beautiful! The pictures are beautiful! Thanks for sharing!

  11. In tears over your precious girls conversation!! I love the love between siblings. Looking forward to the sequel too.

  12. Thanks for sharing those answers. It is great of you to use your blog as a forum to educate many of us. As someone with the strength of empathy, I spend a lot of time worrying about saying "the wrong thing." Thanks so much for sharing here.

  13. We love those two beautiful girls! Thanks for your honest sharing...I'm a little teary myself!

  14. oh kimberlee, thank you for sharing. i also cannot wait for the second edition.

  15. I just ran across your blog. I love and honor that you are raising both your daughters to claim their own, unique authenticity -- their Divine selves. Blessings to you and your whole family at this sacred time of year.


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