Down syndrome awareness

Did you know that October is Down Syndrome Awareness Month?  There is a very good chance that if I didn’t know Kaiti and Harper, I would not know this.  But I do know Kaiti and Harper.  So I am very aware of this.  I went to high school with Kaiti and we played hockey together.  But we didn’t really become close friends (and eventual business partners) until after we graduated from college and when we started having kids.  I remember when she told me that her baby might have Down syndrome.  And then I remember waiting and waiting and waiting to hear from her the day she had her 20 week ultrasound with Harper.  I remember her response.  And I remember mine.  Ever since then, Down syndrome has been a regular part of my life.

I asked Kaiti to write a guest blog post for Down Syndrome Awareness Month.  And she agreed!  So I will let you read her own words and message below.  After her post, I will include a link in which YOU can help!

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October is Down syndrome Awareness Month. Yep, an entire month dedicated to those with an extra chromosome. I could spend this entire guest blog post (thanks Tara) giving you stats and information about Down syndrome. Stats and info is great but getting to know someone is even better. My daughter, Harper, has Down syndrome. 

Her story…

Harper was diagnosed with Ds while I was pregnant with her. She was also diagnosed with a heart defect, called an AV Canal Defect. Basically there is a hole between the heart’s chambers and problems with the valves that regulate blood flow in the heart.

She had open heart surgery when she was 4 months old. She soared through her surgery and recovery. Leaving the hospital after only 5 days. 5 days. She had open heart surgery and it barely phased her. Well, that’s a lie. She had a partially collapsed lung but still, she was out of there in 5 days

That surgery not only saved her life, but gave her the ability to thrive…..on her own terms.   Walking: she waited until she was 2 1/2 years old and for her infant brother to be born. Talking: she’s always been a talker. We are working on intelligibility BUT she will talk your ear off if you let her.

I used to (who am I kidding, I still do) worry constantly about when she would hit milestones. Constantly seeking answers and trying unusual methods. Any mom will do anything for their kid. I’m trying to not worry as much. I need to learn to be patient. Not only does she do things on her own terms but her own pace.  She is the ultimate teacher, a great friend, a joy spreader.  

Things she loves:

Singing, dancing, iPad, reading, school, yogurt.

Things she hates:

Homework, cheese (yep, can you believe it?), being told what to do

Sounds like a pretty normal 1st grader, huh? My suggestion to other kids, hell-all people in general, is to be kind. Include her. Include others. We all have our differences and that is what makes life so fun. My goal for Down Syndrome Awareness Month is to help others embrace differences, include others, and to be kind. Are you up for it?

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Thanks so much for sharing Harper’s story, Kaiti!

This Saturday, we will participate in the Madison Area Down syndrome Society Buddy Walk for Harper’s team:  Harper’s Heartbreakers.  The Buddy Walk raises money for individuals with Ds in the community.  It’s a great cause and if YOU want to donate, the link for Harper’s Heartbreakers can be found here.

 

 

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