The topic of Down Syndrome has been a bit of an open conversation with Mya. She’s heard the words, she knows Ellie has a lot of appointments to help her because of her Down Syndrome, but we’ve never had a serious talk about what those words mean. I know at this age, differences don’t mean much to Mya, so I have almost wanted to keep her in that bubble, where Down Syndrome is only a word and nothing that will ever separate her and Ellie. Tomorrow night we are going to an event with our local Down Syndrome chapter so yesterday when Ellie was napping I sat down to talk with Mya, to begin a conversation that will continue as she grows up. It went something like this:
Me: Mya, I want to have a little talk with you about Ellie and tell you that she has Down Syndrome and what that means. Do you remember hearing us talk about Down Syndrome?
Me: So our bodies are made up of cells and chromosomes and DNA, and a lot of big words. When Ellie was in my tummy her body was given an extra chromosome that makes her who she is.
Mya: Do I have cells and extra things in me?
Me: You have cells and everything that makes you you. Ellie was given this little extra chromosome that can make her seem different, but because the rest of her was made up with the same things that make up you, she is more like you than she’s not. This little difference makes things a little harder for Ellie like sitting up or walking or talking.
Mya: Ellie sits up really good and she’s too young to walk or talk.
Me: That’s true, but as she grows up people may think Ellie sounds or even looks a little different, but you know that Ellie is amazing, just like you, and that you love her and that’s all that matters. When you meet other people who seem different, I want you to see that there is nothing wrong with being different.
Mya: Why would there be anything wrong with being different?
Me: (Holding back tears) That’s exactly what I mean.
I then showed Mya some videos of kids with Down Syndrome and Mya watched them failing to see any difference at all. If people could remain 4 years old in the way they look at people, our world would be a better place. I stopped the conversation at that as I know we will continue later.
I have a very good friend from college who grew up with a sister who has a disability and she is truly a kind, generous, and amazing person. Sometimes I worry about Mya being denied attention when Ellie has doctor’s appointments or therapy visits, but I see her watching and learning. I see compassion growing in her heart and the ability to see people for more than the cells that make up their bodies. Just to see if Mya was listening I told her to tell Travis about our talk when he got home from work.
Me: Mya tell daddy what we talked about today.
Mya: That Ellie has Down Syndrome and that I just love her.
Me: (Holding back tears) Exactly.