Category Archives: Down Syndrome

Meet Beaux

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Today we’re continuing to celebrate Down Syndrome Awareness with four-year-old Beaux! I connected with this cutie’s mama, Lauren, a couple years ago on Instagram. I just think their sweet, Southern family is adorable, especially seeing the photos of Beaux with his big brother. You can find them on Instagram as @mrs_w8s and on Beaux’s Adventures on Facebook.

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What are a few things Beaux is really good at doing?
Being cute. Making everyone around him smile and strive to be better people. Making us laugh. Making us proud. Working harder to do even the simplest of things that most people ever even think about. Little man is a warrior. He’s been through some incredibly tough things in just his few short years and he has done it all with a smile on his face and in his heart.

What are some things he likes to do?
Playing cars & blocks, singing, dancing, snuggling, looking at himself in the mirror. (and who wouldnt? He’s adorable!) Bubble baths!! Going for car rides. Anything to do with daddy.

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What are his favorite foods?
He loves all food, but his very favorite is chicken fingers! He came out of the OR 3 weeks ago asking for chicken fingers right after his tonsillectomy and adnoidectomy, bless it. We were finally able to get that baby that chicken last Wednesday.

And his favorite books?
Pete the cat. He lives animal books because he loves making animals sounds. He cant quite talk yet but buddy can mimic animals!

Who is his favorite cartoon or movie character?
BARNEY! That sweet purple and green magic.

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How is Beaux similar or different from his big brother?
Matthew and Beaux are so much alike it’s crazy! Same taste in foods, toys, cartoons, even the same mannerisms, but Beaux has much more energy and drive to do things. Maybe because it’s harder for him to do things or it could be the fact that every time he does anything, he has his own cheer section.

What has he taught Matthew? What has Matthew taught him?
These boys have taught each other so much. Beaux teaches Matthew unconditional love, patience, to always include everyone, how to smile and get through the tough times, to keep pushing, and to enjoy all the small things. Matthew teaches Beaux strength, encouragement, his first real friendship, and of course he teaches him to burp at the table. And we’ve all learned the power and benefits of inclusion on both sides.

What is the most wonderful part of knowing Beaux?
We feel whole. We never knew that we always needed him.

What is something you don’t think many people know about Down syndrome?
They’re not suffering! They’re happy and they’re more than capable of living perfect, wonderful, fulfilling lives, and they are an amazing break from the boring old normal.

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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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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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Meet Way

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I’ve been looking forward to having Way on the blog all month, and today is the day! Four-year-old Way is similar to my Sammy in many ways, making the chats I get to have with his mama, Lindley,  so encouraging and real. You can find Lindley and her family on Instagram as @OurMorningGlories and on her blog Our Morning Glories.

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What would Way do if he could design his own day?
If Way could design his own day, it would definitely include a trip to the park to play on the playground and swings. Probably followed up with a trip out to the store (he loves running errands with me because he is a social butterfly)! Then, I think he’d choose going to hippotherapy, where he gets to ride his fave horse, Gwinnie, or to music class (he loves music)! Or maybe the library or storytime, because he can’t pass up a good book! We’d have to include time to play with his brothers, too. And to top off his day, he’d vote for a bubble bath for sure!!

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 Who does he love to spend time with?
He absolutely adores his 3 big brothers and the feeling is mutual!

What does he do with his brothers?
They love to play together, which often involves big brothers making up crazy songs and encouraging Way to repeat them! Big bros love to read to Way and help teach him how to do basic tasks! They have a contest every morning to see who can go into Way’s room the fastest—it’s playtime before they head off to school!

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What is something you want everyone to know about them?
I want everyone to know that Way and others born with Down syndrome are fearfully and wonderfully made! God makes no mistakes and that includes ALL of us! Way brings joy to everyone who interacts with him and loves so fiercely it’s unbelievable!

What have been good resources for you to learn more about Down syndrome?
For me, the technical books haven’t had as much of an influence as I thought they would. I expected things to be so different when we found out about his diagnosis while I was pregnant with him. However, Way truly is more alike than different!! So the best resources for me are often the ones I find in relationships. Meeting people in town who have loved ones with DS and the Insta community as well have both been very helpful!

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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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Meet Abby & Bailey

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Today is a big day for one of these two sisters – Miss Bailey is six! Happy birthday, silly girl! You guys, I’m so excited to have these girls on today. I have followed their family on Instagram for years and am constantly inspired by them. When Bailey was just little, Miss Abby became her forever sister through adoption. (She’s now six, as well.)  A big thank you to their mama, Christy, for loving your kids so well and being such an inspiration for so many! You can follow Christy and her family on Instagram at @cjpics.

 

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Miss Abby

What are some things Abby and Bailey enjoy doing?

Abby loves all things musical. She sings at the top of her lungs (and carries a tune better than anyone in our family!), plays her toy guitar, recorder, etc. Girlfriend can make some noise, ha! She also loves to learn and gets excited when its time to do her Kindergarten homework.

Bailey is really into playing with Play Doh and playing with her Peppa Pig characters. She is very social and is a big ham – the more people she can make laugh, the better.

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Miss Bailey

What are their favorite or least favorite foods?
Abby – anything with sugar – cookies/candy/cake. Abby is a very slow eater until she has a sugar treat in front of her and then she can eat faster than anyone around.
Bailey – anything with salt – mostly macaroni & cheese, pizza, etc.   Bailey is what we call an “enthusiastic eater” – she loves to eat and will often stop eating to tell us “Good cook, mommy!”, or “mmmmm, delicious!”

What are a few things the girls are really good at?
Abby has great memorization skills. If its something that can be memorized, she can do it. She’s in kinder and knows all of her letters, the sounds they make, can count to 100, knows all of her numbers, can write words, is learning to read site words, etc. She can also sing songs super well – we always recognize the tune of whatever she is singing.

Bailey is great at making people laugh. She loves to build and use her hands – she makes incredibly cool structures with magnet tiles, blocks, etc. She’s really good at taking knowledge she has and applying it to new situations.

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What have the girls taught their big brother? What has he taught them?
They have taught our son that there is nothing wrong with having Down syndrome. A few days ago a friend of his was asking (not in a mean way) how it could be that both girls were born with the same “problem” of Down syndrome. Taylor’s response was that it is not a problem to have Ds, its just a part of who they are. We told the little boy that it was just like that he and his sister were both born with blonde hair, it isn’t a problem, its just a part of how they are.   I love that the girls have taught Taylor that differences are okay, and everyone has a gift to share with others.

Taylor teaches the girls things every day. He has a sweet voice he uses only for them, and if he can tell there is something one or both of them don’t understand, he will use his sweet voice to explain it to them in terms they understand.   They love and admire their big brother!

What is the most wonderful part of knowing Abby & Bailey?
The joy they bring to us and others. There is not a day that goes by that we do not smile and giggle at something they said or did.   We have also met some of our best friends through these girls!

 

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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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