Monday, October 15, 2012

Quick post

I have a great post but I am having problems posting it. So, to tide you over. I give you The Bohacek's....and Bucky!

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 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. 


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.

Tuesday, October 9, 2012

Trisomy 18 and beautiful Juliet

My mind has been elsewhere the last few days. Constantly thinking of Allie and her daughter Juliet. I blogged about Juliet's prenatal diagnosis of Trisomy 18 a few months ago. Monday, Juliet entered this world.....crying! She is a fighter. And a beauty. 

Please checkout Allie's blog, as well as Juliet's story here

Leave her a note. She will read it and appreciate it. Us Trisomy moms have to stick together. 

Sunday, October 7, 2012

Fall has arrived!

Before I wave my fall freak flag, let me take a minute to thank my new found Ds mama friends! Through our Ds Society in Madison, mommies get together on the fifth of every month and this Friday was the first time I was able to make it! I needed it for so many reasons. So thank you and hopefully I'll join you next month! We had many meaningful and helpful

Saturday was the day I have been waiting for since last year. I've had a rough couple of weeks and the pumpkins, goats, and the corn maze was calling my name. And it didn't disappoint.

Thanks to Tara for the pictures and for joining us with your family! 

Wednesday, October 3, 2012

Tuesday, October 2, 2012

Day 2: Breaking Stereotypes

Harper doesn't know she is breaking stereotypes but she is doing it every single day. Let's take my job as an example. I'm the director at a child care center. We see up to 100 kids every day. Only one child has special needs. Harper. But she is loved by the teachers, classmates, older children, and even other parents. Obviously my staff are aware she has Ds and some of the parents have confirmation from me but that's it. Harper is loved at school because she is Harper. She is cute, talkative, and awfully cuddly.

The children who "love" Harper at school don't even realize they "love" a child with special needs. One day that will change. There will come a time where young friends and family will realize that Harper is different. They may shy away or they may continue to help break stereotypes and continue to treat Harper as they are now....the same as any other child.

The stereotype that constantly plays in my head is that "people with Ds are always happy." Today that was on a loop. Why? Because Harper was the farthest thing from happy today.

It would seem reasonable to insert a video of Harper being dramatic but technology is not on my side tonight. 

Before the dramatics

I don't live in la la land. I am fully aware that Harper can't get by on her good looks for the rest of her life. She has charmed the pants off of many people...Ds or not, the girls got spunk. But for now, I'll stay in la la land and enjoy the fact that strangers stop to see the pretty baby. Not staring because there is a girl with Down syndrome.


For readers who visited my friend Allie's blog and read about her daughter's prenatal diagnosis with Trisomy 18....we are officially on baby watch. Allie and Juliet have reached the due date. They will allow nature to take it's course but if Jules isn't moving then Monday will be the day. Allie and her family are in my thoughts daily. Please keep her in yours.

Monday, October 1, 2012

Day 1: Down syndrome Awareness Month

October is Down syndrome Awareness Month. Thirty one days of pictures and updates about this girl.

I'm sure you won't complain. And if you do then you will not see pictures like this...

Or this....

I promise to raise awareness each time I post. But will it be every day in October....probably not! We have many topics to talk about, but better yet, lots of pictures to post.