IN CELEBRATION OF WORLD DOWN SYNDROME DAY

  1. March 21 is World Down Syndrome Day because Down Syndrome occurs when there is a third chromosome on the 21st pair of chromosomes. (Get it? 3/21)
  2. In December 2010 my sister was 8 months pregnant and carrying a lot of extra amniotic fluid. This is a marker for Downs.
    She had decided against the genetic testing offered earlier in her pregnancy, so this was the first time it was considered as a possibility.
  3. I was at her house watching her other kids when she came home from her appointment. She collapsed at the front door crying as she tried to tell me about the extra fluid and what it might mean.
    She was overwhelmed and scared for the baby's future.
  4. On January 18, 2011 she gave birth to Natalie Grace. Doctors told her right away that they were fairly certain the baby had Down Syndrome.
    Natalie had common markers including wider spaced eyes and sandal toes, which means she has a bigger gap between her big toe and the 2nd than typical.
  5. The next day it was confirmed through genetic testing.
  6. Natalie also had a stomach issue where her stomach wasn't connected to the rest of her digestive tract. This is also common with Downs babies.
    It was corrected through a surgery when she was three days old.
  7. A lot of Downs babies have heart problems, but Natalie didn't!
  8. No one in my family had ever met anyone with Down Syndrome before Natalie, and we were honestly a little scared about what it meant.
    Our Ambassador to the world of Down Syndrome was a tiny baby who spent the first two weeks of her life in NICU. She was perfect to us.
  9. I spent many nights in the NICU holding Natalie, talking to her, singing to her and texting pictures to my mom and dad who were sick and couldn't visit.
    My sister and her husband spent their days there and their nights with their two older children.
  10. Fast forward 5 years.
  11. Every milestone with Natalie is something to be celebrated.
    From when she finally started to be able to take milk a few days after the surgery to when she started sitting up at a year old to when she started walking and talking. Now she's in pre-kindergarten, and she's learning to read!
  12. I think sometimes people think that kids with Down Syndrome are always happy, always smiling.
    This is not true. Kids with Down Syndrome have all the same moods as typically developing children.
  13. What we've learned in the 5+ years we've loved Natalie is that she's more alike than different.
    She loves Rapunzel and singing Let it Go. She throws tantrums when she's tired. Her favorite pastime is playing with her dolls or looking at books. (She could do either for hours uninterrupted.) She gives the sweetest hugs, but she's almost never happy when she wakes up from a nap. In other words, she's a lot like most typically developing children.
  14. This is my favorite picture of Natalie that I've taken. Her shirt says "Miss Independent," and I'd say it captures her personality well.
  15. Each year for World Down Syndrome Day, my sister makes stickers to hand out to friends and family. It's cool to look back at them and see how Natalie's grown.
  16. 2012
  17. 2013
  18. 2014
  19. 2015
  20. 2016
  21. She's changed our lives, as any baby would.
    But she's also taught us lessons about love, compassion, and patience. She's introduced us to an unforgettable community that has shown us that the third chromosome on the 21st doesn't define people with Down Syndrome. Everyone is unique in their own way.