From the Mouth of Babes

With Down syndrome Awareness month over, I realize that I did not do my part this year. Life has is happening. This post has been in the works for quite some time and I've had a difficult time hitting the post button. So here it is...



Explaining Harper's Down syndrome diagnosis to adults was difficult. Most adults have a negative view of Down syndrome. And I know that it's difficult to overcome preconceived opinions. I also knew the day would come that I would have to explain Ds to a child. I had thought about what I would say to that child and how important my explanation would be. It's a chance to help that child form a positive opinion on Ds. And I knew I couldn't blow it. 

The time came a few months ago. My neighbor, Megan is 7, intelligent, caring, and very inquisitive. Her parents are very honest with her and answer her serious questions with serious answers. So when Megan asked me why Harper had heart surgery, I explained to her that she had holes in her heart that needed to be fixed. When she asked me why Harper had holes in her heart....my heart sunk. 

I got nervous. But I knew I had to answer fast. And I had an obligation to the Down syndrome community, Harper, and Megan to give her an honest answer.

I said: Harper has holes in her heart because she has Down syndrome and some kids with Down syndrome have something wrong with their heart that needs to be fixed.

What is Down syndrome? 

This is it. Come on Kaiti, give her a great answer. I knew her mom was listening and I wanted to say the right thing and finally it came to me....Down syndrome means that Harper may learn things slower than you or your brother. But she will eventually learn everything you know. It may just take her longer. 

Megan understood. She accepted my answer.  She understood that this is why H is crawling yet or why she isn't walking. 

I looked over at her mom with tears in my eyes. She approved of my explanation. 

I knew I had just helped one form a new positive attitude toward Down syndrome. I was proud of myself. And proud of Megan for being so....normal about it. She didn't start treating Harper different. She still doesn't. She just wants to help Harper learn as fast as she can. 

Flash forward to a few days later. We were at Megan's house and baby Owen was there. He is the cutest baby boy I have seen in awhile and he was putting weight on his feet. His mommy and I were having a conversation about how Harper won't put weight on her feet and she is older than Owen.  

Megan was right there and said, "is it because she has Down syndrome?" 

I said, yes it probably is.

Megan, "Does Owen have Down syndrome?" 

"No," I responded. 

Megan, "Oh, well Harper will learn how to stand but it may take her a bit longer." And she walked away. 

I cried. But happy tears.

My wish for Harper is that she has many more "Megan's" in her life.

Megan gets it. She is accepting and doesn't bat an eye because Harper is different. 

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There are times that I tell adults that H has Down syndrome and they give me the sad face. Honestly, I want to smack that sad face right off and sit them down in front of a computer to read this blog. 

Then there are trips to Target like the one I had recently.

Harper was in cuteness overload during that trip. She was a talkative and smiley bundle of happiness. We were getting ready to check out and a gaggle (how many is a gaggle?) of ladies stopped their shopping to talk to Harper. They asked me her name, age, and told me over and over how cute she was, how blue her eyes were, and how happy she was. 

I left that conversation thinking to myself that they had no idea that Harper has Down syndrome. How did I know that? 

I didn't get the sad eyes. I got the "OMG, your baby is sooooooo cute eyes." 

They enjoyed Harper's cuteness because, well, she is really cute! But I knew that Down syndrome helped make her that adorable.

Down syndrome Awareness Month is important. The blogging community always steps up it's game. I felt awful every day in October when I didn't blog or post a Ds fact on Facebook. But honestly, Down syndrome awareness happens everyday in my life. Everyday, Harper is breaking stereotypes. She is loved in this family because she is Harper....not because she happens to have an extra chromosome. Would I take that extra chromosome away if I had the opportunity? Absolutely not.