Category Archives: Down Syndrome Awareness Month

Meet Clara

 

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Oh, beautiful Clara Noelle. I first met Clara’s mom, Mandy, when I shared about my own experience as a parent of a child with special needs at a local early childhood meeting last December. I remember thinking how adorable Mandy was as an expectant mama. Just a few weeks later, I received a message from her. Mandy’s daughter had been born and, unexpectedly, she came with a very special extra chromosome. I don’t think that our meeting that day in early December was coincidental. I had a similar encounter before Sam was born, and I truly believe both were orchestrated by a God who loves us and loves his sweet babies. So, it is with such joy that I share Clara and her family with you today! You can find Mandy and Clara (now 9 months old) on Instagram as @mandyjopeterson

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What are some things Clara enjoys doing?

Clara adores spending time with her sisters Ellery (6) & Lucy (4). She loves to look at books with them, listen to their stories, play with them and loves when they sing to her. Watching our girls together makes me so happy. When Clara was born and we were given her diagnosis of Down Syndrome, one of our first thoughts were to wonder how this would impact her sisters. Our worries vanished quickly as the girls instantly adored Clara. They are thrilled with each new tiny milestone she meets and every giggle and smile she gives them. They are the proudest of sisters and cheer her on at every chance they get. We have talked a little about her extra chromosome and how she has to work a bit harder than most babies do to meet her milestones. I was so nervous to bring it up to them initially, but it hardly phased them and they love her intensely regardless of how quickly she is able to do anything.

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What is the most wonderful part of knowing Clara?
The most wonderful part of having Clara is how happy she makes us. She is seriously the sweetest baby and her smile just melts our hearts! She is so mild mannered, not one to fuss about much. She is an awesome sleeper and a total mama’s girl. She will smile at nearly anyone who looks at her and when we are out and about I am frequently told what a sweetie she is.

Having Clara has also enhanced the desires and goals I have for my family. My greatest wish is for my girls to be compassionate, kind and loving. And that they are strong enough to stand up for what is right, especially if that means they are standing up for someone who may not be able to do that for themselves.

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What have been good resources for you?
From the first days of Clara‘s birth we have been welcomed into the amazing Down Syndrome community. They have reached out to us when we were besides ourselves. My greatest resource in this new journey has been a Down Syndrome Diagnosis Network Rockin’ moms group on Facebook. I have been introduced to so many moms through DSDN who have offered support at every turn. Sharing this journey with others facing similar challenges has meant more to me than I can explain.

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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 Carter & His Sister

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Today I am happy to introduce you to 3 year-old Carter Vadim and his 2 year-old little Sister! I met their mama, Carly, on Instagram after Carter was adopted when he was just 7 months old. Then, a few months ago, Sister joined their family. While they complete the adoption process, Sister’s identity is being kept private, which is why we don’t see her face in the following photos. I’m just so glad Carly was open to sharing her beautiful children with us! Adoption is such an incredible part of building a family. In fact, we have multiple families coming up this month who have grown their family through adoption. If you’ve read our adoption story, you’ll know it is something we long to do as a family, as well. You can find Carly on her blog Jovial State of Mind and on Instagram as @nurseicarly.

 

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What are Carter’s and Sister’s favorite foods?
Carter Vadim loves blueberries. He loves all fruit but he will ask about blueberries at least once a day. Sister had been primarily fed via a gastronomy tube until she came to our home 3 months ago. Now she is eating pureed food like a champ. The first time we introduced a spoon to her she had no idea how to even close her mouth around the spoon. It is so great to see how well she is doing so fast. She loves avocados. She also has thing for all things sour. She loves to munch on pickles or limes.

What are their favorite things to watch?
We are huge Signing Time fans in our house. We have learned so many signs to help build our growing vocabs. We are also huge Wiggles groupies. They have their own sign for The Wiggles and they will both ask for it anytime we see a TV anywhere. Carter loves the books Big Red Barn and Barnyard Dance.

What are a few things Carter and Sister are really good at?
I am that mom that obnoxiously thinks her babies are amazing at everything they do (has anyone seen The Goldbergs). I seriously got Carter a medal from Dollar Tree the other day because he was the cutest eater ever! He really is good at physical things: running, climbing, DANCING, forward rolls, ninja rolls, etc. He is a mover and squirmer. He has become a great greeter. He loves to shake hands or give high fives to welcome or say hello to everyone he meets. Sister is a sponge. I will say something to her once and she immediately is trying to repeat it or do it. I cannot wait to see how she continues to grow and learn.

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How are their personalities similar or different from each other?
Carter and Sister have some similar personality traits but are also very unique. It is a great example of how it is an incorrect assumption to stereotype people with Trisomy 21 as all happy or with a certain personality. Carter is always on the move and loves to greet and say hello to EVERYONE. He is also a bit more sensitive about certain things. He becomes tearful with loud sudden noises, gets told no, or even if other children get in trouble. He is tender-hearted. Sister can be more easy going about most things but she also has a lot of SASS. She is not afraid to tell you “No” with her hands on her hips. She is sweet but spunky.

What is the most wonderful part of being their mama?
They bring us such joy and they constantly are grounding us to remember the value and worth of every person we encounter every day. I am so thankful for how they have opened my heart and eyes to love more. They are my reminder to choose love over fear.

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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 Kaycee

 

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Not only are we celebrating day 11 of Down Syndrome Awareness Month, but today we’re also celebrating Miss Kaycee Adalynn’s third birthday! I first introduced you to Kaycee one year ago on her second birthday. This year her mama, Angela, tells us a little more about her sweet girl. You can find Kaycee and Angela on Instagram as @AngelaRobbins.

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What are a few things Kaycee enjoys doing?
I’d say Kaycee’s absolute favorite thing is dancing and singing! She is always singing along with the songs on the radio and adding some adorably hilarious dance moves, including but not limited to butt shaking and off kilter twirling. And if you’ve been around her recently, you were likely serenaded with a custom version of ‘happy birthday’ – her new favorite, which she refers to as ‘Happy’ (which can be confusing as her other favorite song is ‘Happy’ by Pharrell Williams!). Kaycee also thoroughly enjoys making people laugh! She loves when she does something funny and the people around her react, especially the stifled giggles – those really fire her up. Besides being the entertainment, she also loves swinging, playing hide and seek, giving hugs, prancing around the house naked, coloring, wrestling, playing pretend, hiding in fear of flies, and begging for a banana only to leave it peeled and unfinished.

What are her favorite shows, games, or books?
Kaycee absolutely loves Curious George and the Little Einsteins! When she hears the theme songs, she stops everything, directs everyone’s attention to the historic life moment, and proceeds to sing and dance her way through the start of the show with the expectation of full applause when her performance is complete. She loves to entertain! Her favorite games are Connect Four and various puzzles, but she has been on a big Lego kick lately. She enjoys any book within reach, but I’d say right now she particularly loves the Daniel Tiger book she picked out as a prize during the summer reading program this year. She also shows undying affection for any book a sibling is trying to read.

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Who does she love to spend time with? What do they do together?
She loves to spend time with her brother and sister. Cameron (7) is so good at honing in on her and making her feel like his whole world. He knows she loves to be tickled and they almost daily end up in a wrestling tickle match. Ellie (5) has a very similar personality to Kaycee in that they both tend to be the “ask forgiveness, not permission” type. They are like two peas in a pod, trouble and all. When they aren’t getting themselves into trouble, they are usually found playing with baby dolls and dressed up in elaborate outfits. And if there is anything that will result in getting dirty or wardrobe changes, they will certainly be the first ones there.

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What is something you want everyone to know about your daughter?
Kaycee has brought a whole new dimension of unique personality and quirks to our family, as have each of our kids. Down Syndrome (mosaic or otherwise) doesn’t automatically mean all smiles or joy. But it also doesn’t mean inconvenience or burden. She’s so beautifully perfect, a life of unique character, and we wouldn’t have it any other way. She’s a kid like any other who needs love and affection. And ice cream. Lots and lots of ice cream.

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Happy 3rd birthday, Kaycee!

 

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 Ruby

 

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It is such a privilege to introduce you to five-year-old Ruby and her mama, Liz, on day 10 of Down Syndrome Awareness Month. I found these lovelies on Instagram a while ago when a friend reposted a story about a young adult with Down syndrome heading off to college. Ruby’s Rainbow is an incredible organization providing scholarships for adults with Down syndrome to attend post-secondary education. I so highly recommend following Liz, Ruby, and Ruby’s Rainbow on Instagram and Facebook, including the current series #RubyAndNellaRockTheFuture.  Thank you, Liz & Ruby, for celebrating with us today!

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What are some things Ruby loves doing?
Ruby loves being with her family and friends, but she is also a freak for the babies. Real live babies, baby dolls, playing baby. She loves spending time outside riding her tricycle, jumping on the trampoline or running around the culde-sac with the crew. Ruby loves to dance also and is in a ballet/tap class that she is rockin’!

What are her favorite movies and games?
She loves The Incredibles and Toy Story. She got to meet Woody and “Mrs Incredible” as she calls her at Disney this summer and freaked! We are a family of “gamers” over here, so she loves any kind of game. One of her faves is Camelot Jr though or anything with dice. She loves to roll them!

What are a few things she is really good at?
Ruby is great at all sorts of things! She loves riding her tricycle and is doing really well at it. She is very athletic and just realized she will be really great at soccer (just like big sis), so we are going to find her a team soon. She is incredibly kind and compassionate and is an amazing friend and sister. A “Ruby Hug” will make anyone’s day brighter. She is also rockin’ kindergarten and loves school!!

 

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What does Ruby have in common with her sister?
Both my girls are smart as heck and have a kindness and compassion to their spirits that makes this mama proud every day.

What have your girls taught each other?
Ella Mae is Ruby’s best therapist. She wants to do EVERYTHING big sis does, so the things that Ella Mae has taught Ruby is too many to name. Ruby teaches Ella Mae patience and a type of nurturing you can’t learn from just anywhere. They both believe in each other more than anything I have ever seen, so to watch them cheer each other on is something I cherish each day.

What is the most wonderful part of knowing them?
Well just being a mom is the most beautiful and rewarding thing in the whole wide world!! To look at my girls and know that they are mine, and to watch them grow into loving, caring and kind lil’ ladies is about the coolest thing ever!

 

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What have been good resources for you to learn more about Down syndrome?
In my opinion, all the books I read were not helpful. The info was all outdated and generalized. My best resource? My daughter, Ruby. She is her own lil’ person, with her own amazing qualities and her own challenges…just like we all have. We all bring something wonderful and unique into this world, and no book can predict that!!

What is something you don’t think many people know about Down syndrome?
Hmmm….There is so much I would love for the world to know! But one thing is that peeps rockin’ that extra chromosome are going for their dreams of higher education and independence. 🙂

 

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 Nolan

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Meet Nolan! Today, this smart, five-year-old is helping us celebrate day 9 of Down Syndrome Awareness Month. Nolan’s mom, Melissa, tells us a few sweet things about her boy and what makes him unique. You can find Melissa as @melifin on Instagram.

 

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What are some things Nolan thoroughly enjoys doing?
Nolan LOVES doing puzzles. We call him “The Puzzler” because he is so good at them. I don’t just mean the little kid puzzles with the knobs either –I mean real jigsaw puzzles, around 30 pieces. He has a few favorites that he can whip through in mere seconds, but also enjoys the challenge of a new puzzle, too. His brain is just wired to see how all the pieces fit together. And he’s always eager for an audience to congratulate him on a completed puzzle. Nolan also LOVES being outside. He really enjoys digging in the dirt with his shovel in the backyard, playing with our dog, and playgrounds are his happy place.

What are his favorite and least favorite foods?
Nolan is a bit of picky eater, as he has some texture aversions, but he has never met a fruit he doesn’t like. I have trouble keeping fresh fruit stocked in our house because he can eat way more than the daily recommended servings of fruits. He’s also very passionate about Popsicles and French fries.

What are his favorite books?
Nolan loves books in general, but one specific kind of book he likes is Search and Find books. I think it appeals to the same part of his brain that loves puzzles. 😊

 

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Who is Nolan’s favorite movie or cartoon character?
Nolan tends to obsess over one show/character for several months, then jump to a new obsession. He revisits past obsessions, but always has a current favorite. He loves Curious George, and is just coming out of a major Paw Patrol obsession, but Peppa Pig is #1 right now.

Who does he love to spend time with? What do they do?
Nolan is a family guy. He is happiest when Mom, Dad, and little sister are all home, and in the same room together with him. He will pull us by our hands into the dining room and make us all sit down at the table to eat, or so we can watch him do puzzles. Whether we’re playing, eating, or sitting around talking, anytime we’re all together, he’s happiest.

What have been good resources for you to learn more about Down syndrome?
Our local Down syndrome association has been a great resource and support for us! I also enjoyed the book Immeasurably More by Linda Aalderink and reading Down syndrome blogs.

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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 Ari

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Day 8 of Down Syndrome Awareness Month is brought to you by Ari! I met Ari’s mama, Lacey, on Instagram just after Sam was born. Ari is four, just like my Sam. I can’t tell you how great it is to have other moms on this journey who are in such a similar place in life as we are. Today, Lacey shares a few fun things about her boy. You can find these two on Instagram as @laceyhochman and on Lacey’s blog FollowEveryDream.com.

 

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Who is Ari’s favorite cartoon or movie character?
His current favorite cartoon is Little Einsteins. I love hearing him quote lines from the show when we aren’t watching it. Every episode features an artist and a classical piece of music. The other day, I smiled so big when I heard him exclaim, “Yaaaaay Mozart!!”

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What would he do if he could design his own day?
He would get up, jump on our bed with his sister, then go downstairs for breakfast, which would be a plain tortilla. He would then go out back, turn on the hose, and proceed to douse everything in water, particularly his poor little sister! We would then go to the nature and science museum or the zoo. For lunch, we would go out for pizza and fruit snacks. There would definitely not be a nap. 🙂 Instead, we would watch Frozen, and have a tickle/wrestling match on the floor.  We would finish the day with a “dance party,” and lots of splashing in the bath. There would also be lots of singing throughout the day!

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What are a few things Ari does well?
Ari is really great at speaking. He talks all the time and has an amazing vocabulary. He is really social, and that has helped so much with his transition into preschool. He is also very adept, physically. There isn’t a single physical activity that he cannot do.  Of course, I most appreciate his ability to make us smile and laugh. He is such a goofball!

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We’ll be doing a little traveling for a training session right before we leave for Kenya this winter, and we just might get to meet Ari and his family! If so, I’ll certainly post photos of the boys together. Thank you for being a part of our celebration this month, Lacey & Ari!

 

 

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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