Meet Rauri

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It’s true that October is officially over, but we’re going to go with Down Syndrome Awareness posts for a few more days! I decided we really must go into November because TODAY is this dear girl’s very first birthday! Miss Rauri has a very special place in my heart. I introduced many of you to her in September when I shared photos from the Step Up for Down Syndrome Walk. Rauri’s mama, Alexa, was actually one of my English students 10 years ago when I was doing my student teaching near Duluth. When she posted in our local Down syndrome Facebook group a little over a year ago, I knew she seemed familiar. I was thrilled to have this amazing mom in our Down syndrome community! You can follow these girlies on Instagram as @lexxbarnes, on Facebook, and on their blog. Happy first birthday, Rauri!

 

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How is Rauri similar or different from her older brother and sister?
It’s no secret this was something I lost a lot of sleep over when I was pregnant and it’s probably the #1 thing I can look back at and laugh over already. I worried they would treat her differently. I worried they would notice she was a little different than they were. I worried they would resent me for having to spend time away with her while she was hospitalized on multiple occasions. I worried that they would revolt when she got the attention alone that all three of them needed combined. I worried they wouldn’t take to her. After all, they were used to it being just the 2 of them, doing normal kid things. I worried they wouldn’t be accepting of the many hours a week we have therapists around, the screaming of alarms she was on for months, or the amounts of time I had to devote to doing just typical things with her. I worried and worried. A lot.

And I never should have.

She is their missing puzzle piece. And I thank God everyday for the big siblings Rauri has. They’re amazing to her, with her, around her, and have grown leaps and bounds as individuals because of dynamic we have as a family.

They are the endless possibilities she will have when we leave this earth because they know her potential just like we do. They know her spirit just like we do. They know her worth just like we do. And they want the best for her, just like we do.
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What is something you want everyone to know about Rauri?

I don’t think it would be possible to teach someone everything she has taught me in the last 20 months between her life here with us, earth side and my pregnancy with her combined. She has taught Charlie and I and the kids immeasurable life lessons. What it’s like to see SO FAR beyond someone’s differences to the real treasure trove they are. In fact, by now – there isn’t much I notice about her that IS different. Shes our Rauri girl. She has really good days, really bad days, days she challenges me as a mother, days I drive 20 miles around town just trying to get her to sleep, nights she floods the bathroom while in the tub, nights I sit up nursing her in wonder of how on earth we were chosen, how we got so lucky to be her parents… just like I sat up and wondered with London and Nash. It’s really no different at all.

What have been good resources for you to learn more about Down syndrome?
I will give credit to the Down Syndrome Diagnosis Network til my dying day. It was the first true place where I felt safe, where I felt like I was on the same journey as those around me, and thankfully, where I have met some of the best friends a girl could ask for.
What is something you don’t think many people know about Down syndrome?
I have seen a hashtag over and over lately that reads THE BEST KEPT SECRET (#thebestkeptsecret) and it really truly is. If we were able to see into the life of a family with a child with down syndrome, there wouldn’t be such a fear or stigma about it. A Down syndrome diagnosis is really #thebestkeptsecret.

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At the Step Up for Down Syndrome Walk last month ..

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Check back tomorrow as we continue celebrating Down Syndrome Awareness Month or click below to read all of our previous posts.
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