Wednesday, March 21, 2012

World Down Syndrome Day: All About Claire

Happy World Down Syndrome Day!

March 21 (3/21) was chosen as World Down Syndrome Day as Down syndrome is caused by three copies of the 21st chromosome.

Down syndrome has been in the news recently and the coverage hasn't all been all positive.  First, another company has launched a non-invasive prenatal test for Down syndrome.  I'm not against the test itself, I believe knowledge is good and powerful, but the testing company has a financial reason to portray people with Down syndrome in a negative manner.  More terminated pregnancies mean more financial support from insurance companies.

The second story to hit the news recently is heartbreaking.  A family recently sued their doctor for their daughter's wrongful birth.  They had a prenatal test which showed that their daughter did not have Down syndrome, when in fact they found out at birth that she did.  The family sued, and won millions, because they said they would have terminated the pregnancy if the prenatal test had been accurate.  I cannot wrap my mind around the fact that this family has raised their daughter for years (she is 4), and they are still be able to say "I wish you didn't exist."

The scariest thing about Down syndrome is the unknown.  When most people think of Down syndrome, they think of the negative connotations.  Delays, decreased cognitive ability, the possibility of being unable to live independently.  But really, these are a possibility with any child, any person.

While I am only two years into raising Claire, there are so many things I would miss out on if she wasn't in my life.  Today I would like to share what Down syndrome (in the form of a two year old) is really like...

Claire is...

1.  Daddy's girl.  When he is around, I am chopped liver.
2.  In love with sandwiches.  Cheese sandwiches are a favorite, but anything else you can reasonably call a sandwich (pizza sandwich, burrito sandwich) has been a hit lately.
3. Not a fan of having her hair done.  It is a battle every morning to get a comb through it, let alone a rubber band or cute barrette in.
I asked her to smile for a picture, and got the
sign for smile instead.  :)
4. A book lover.  And Clairey knows that the best place to read a book is snuggled in someone's lap.
5. An expert toilet paper unroller.
6. Independent and stubborn.
7. Not a fan of breakfast.
8. A hitter, biter and head banger when she is frustrated.
9. Incredibly hard to diaper.  She refuses to sit still.
10. Pretty good at using a spoon and a fork, but she has recently gone back to eating with her fingers.  
11. A daredevil.  There is no such thing as too high, too fast, or too upside down.
12. A wonderful mimic.  If we are teaching her a sign she is very motivated to learn she'll have it down with just a few repetitions.
13. Organized.  Open cabinet doors and drawers don't stand a chance around her
14. Little miss social.  A trip to Walmart or church is just another opportunity to wave and smile for all her adoring fans.
15. A huge fan of songs with actions.  Her current favorite is a self created medley of Itsy Bitsy Spider, The Chicken Dance, and Head Shoulders Knees and Toes.
16. Smart and creative.  Claire has an empty cabinet she plays in, and she taught herself how to close the cabinet door while sitting inside. 
17. A chewer.  If you don't want something in her mouth, don't give it to her.
18. The best hugger.  Especially when the hugs come with little pats on the back.
19. Great at following directions sometimes.  Other times, you may as well be talking to a brick wall.
20. The best big sister!
21. The light of my life and a fabulous teacher.  I have learned so much from her already about love and acceptance.  I am truly a better person because she is in my life.

While most people who read here are friends, family, or already know that magic of the extra chromosome, I hope that this small glimpse into our real life will show someone that a life with Down syndrome is a life worth living.

My friend Patti is hosting another fabulous giveaway to help a little girl with Down syndrome come home to her forever family.  Please stop by if you have the chance.


  1. Absolutely THE BEST post I have ever read in my life! I love you all very, very much! Tell Claire I am imagining a hug with those special pats on the back, right now. XOXO

  2. Love hearing about Claire! #19 describes Russell pretty good! lol

    Happy World Down syndrome day :)

  3. It always amazes me how similar Sutter and Claire are - I could have written this exact list minus the biting and big sister part! :)

    Happy WDSD!

  4. So blessed that these children have connected us, in the incredible ways that they have. Who could have ever imagined the beauty that was to come, from that extra, magical chromosome? Beyond our wildest dreams, uh?

    Love to you all.

  5. Happy World Down Syndrome Day to Claire!
    I love the expert toilet paper unroller...hahaha!

  6. Happy World Down Syndrome day to you too! Claire and Emily certainly have a lot in common!

  7. What a beautiful tribute to motherhood and the world of Claire.

  8. Oh, I LOVE this post!! Claire sounds amazing -- an awfully like any adorable two-year-old.

  9. Awesome post! Beautiful little one.

    Tammy and Parker
    @ParkerMama on Twitter
    Praying for Parker on Facebook

  10. What a great list! And all so ... typical! Imagine that! :)


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