What does it mean to have Down syndrome?
She replied with something about a friend in trouble at school, totally distracted.
Ellie, who else has Down syndrome?
Me! And Audrey!
You and Audrey both have zippers from heart surgery.
We go through the list of friends who have Down syndrome (reminding her that not every friend has Down syndrome, because she got off track and just started naming friends) but Ellie is more interested in changing her baby doll and yelling about baby going poop and pee. Ellie is 4.5, has Down syndrome, and a love of potty humor just like other 4.5 year olds. "She pooped!" is the funniest thing ever around here.
This is what we tell Ellie about having Down syndrome:
* Down syndrome makes you more flexible so you are a better gymnast
* Down syndrome can make some things a little harder for you and that's okay
* Down syndrome isn't an excuse but some things might take longer
Ellie understands her heart surgery and mixes that up with having Down syndrome. And that's okay. We want her to feel free to ask questions and feel comfortable talking about difference. She understands more each year.
We never want Ellie to see having Down syndrome as bad, or as better than other kids. We want her to be proud of who she is and Down syndrome is just one thing about her - not the defining thing, although a big piece.
a niece and a great niece and a great-great niece
an active participant in church
an animal lover
a pretty good cook for her age
a congenital heart defect survivor
a NICU baby
a big girl
and a child with Down syndrome