Category Archives: Down Syndrome

It’s Sam!

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Today I am so very happy to be able to share my dear four-year-old Samuel with you as our last post of Down Syndrome Awareness Month. What a month (and a few more days) it has been! I so hope you were able to read the stories of the children featured this month and see ways they are just like other children in many, many ways. When my Sammy was first born, I was worried he would be a cookie cutter of Down syndrome, but I quickly learned there is no such thing. Every child, no matter their situation, is unique and has a story to share. Thank you for taking the time to join us here all through October and for being a part of this journey! If you have any questions for me about Down syndrome or any of the children we featured, please comment after this post or send me a message on the contact tab above. I am always happy to answer questions!

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What are a few things Sam really enjoys?
Sam adores music. He often jams out to songs in the car or at church, and his air guitar and drumming skills are getting to be top notch. He also likes to dance and sing made up songs. Nothing makes Sam happier than when he gets to be with his daddy, so visiting Daddy at work or wrestling with Daddy at home are a couple of his favorite things. Other favorites: throwing rocks into Lake Superior, playing with the train table at the library or at church, running his tractors all over the living room, and going to preschool.

What is his favorite movie?
Sam’s absolute favorite movie at the moment is Minions. This is the first movie he’s really attached himself to, and we think it’s pretty cute. We joke and say it’s because he understands the Minions’ random language. Ha.

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What would Sam do if he could design his own day?
If Sam could do anything for an entire day, he would likely wake up and crawl into our bed to cuddle for a while. Then we’d eat lots of Greek yogurt and watch Daniel Tiger until the zoo or the children’s museum opened. We’d play there all morning, eat only ice cream for lunch, have a dance party, and then nap for the afternoon. Dinner would absolutely be more ice cream and then we’d watch Minions before tucking in for bed.

What has Sam taught his big sister, Ella? What has she taught him?
Ella was just about the turn three when Sam was born. We knew at that time it was probably too early to talk to her about her brother’s diagnosis, and it was really important to us not to put a label on him. He was her little brother and that’s all we wanted. Years passed and we did eventually tell Ella about Down syndrome. We spend time with friends who have children with Down syndrome and I wanted to make sure she understood she may need to extend more amounts of grace and patience with each of them. However, when we connected it to her little brother, she didn’t care the least bit. She has never seen her brother as anyone other than “her Sammy.” I am amazed at the unending patience she has with him, especially when she is impatient with every single other person she encounters on a challenging day. She is always the first to help if he needs anything. Her grace and love has grown tremendously the last few years, and I have no doubt that it is due in great part to her little brother.

I cannot even begin to list all the things Sam has learned from his big sister. His first word was actually her name! Ella is the first at his side to help him out of a chair or to walk across a room. She calms him when he is upset and wrestles with him when he tackles her. She has taught him what it looks and feels like to be a little brother. She is his greatest cheerleader. When I can’t get him to eat something at dinner or complete a task when we’re working together, I ask Ella to do it while he watches. It is rare for him not to jump in and follow her lead. These two together make me incredible proud to be a mama!

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What do I want everyone to know about Sam?
I want everyone to know that Sam has incredible potential. He is a child beautifully and perfectly created by God. I pray that God will place big dreams in his heart and that he will follow God’s leading in his life. I also want everyone to know that Sam is strong and brave and creative and so, so smart. He may need extra time to complete tasks or learn skills, but seriously, who set the expectations that we need to understand concepts or develop particular skills at a specific pace in order to be valuable? Let’s toss those ideas out the window and embrace the beauty of being unique. That is what we need to value and uphold in our world.

What are some good resources I’ve encountered?
Statistical books can be overwhelming, especially right after a diagnosis, so I recommend staying away from those for a little while. Instead, I have found great wisdom and hope in personal stories. Books, blogs, videos, Instagram. Just a few resources I like: The Down Syndrome Diagnosis Network, Changing the Face of Beauty, Enjoying the Small ThingsWe’ll Paint the Octopus Red.

 

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If you missed any of the posts during Down Syndrome Awareness Month, click the image below and you’ll be taken to all the stories!

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Meet Reese & Hazel

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It’s nearly time to wrap up Down Syndrome Awareness Month here on the blog because we’re breaking all the rules and have gone right on into November! Tomorrow we’ll end our celebrating with our very own Sammy. But first, I want you to meet five-year-olds Reese and Hazel – also adorably known as Reezel. I love following mama Nicole’s posts on Instagram and seeing the relationship between her four girls. And you must go watch the signing videos Nicole posts! Seriously, I melt with every single one and am always super inspired to learn more signs with Sam. Click over to @mizzoumum to follow. Another family made complete by adoption. Oh, I just love it!

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First, what are some things the girls really like to do?
Reese loves to dance, sign, swim, play with our personal/foster animals & love on her baby dolls. She also loves church, storytime at the library, parks & school (most of the time 😉 ).

Hazel loves to eat, dance, play on the iPad, listen to music, jump on the trampoline, ride on mom’s shoulders & watch Signing Time. She loves puzzles, learning & being challenged. She takes great pride in accomplishing new things & has been described as a “workhorse” by her teachers. She was known as “little hero” in her orphanage – she loved helping the staff with the younger children & various chores. I see so much of that in her personality.

Who are their favorite cartoon characters?
That’s tough. Reese is currently obsessed with princesses. Fiona (from Shrek), Rapunzel (from Tangled) & Elsa (duh) are favorites. Harper (the girls’ little sister) introduced her to Peppa Pig & it’s definitely her new favorite cartoon. Hazel hasn’t really gotten into movies or cartoons yet but basically idolizes Rachel, Alex, Leah & Hopkins from Signing Time!

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If the girls could do anything for a day, what do you think they would do?
Reese would alternate dancing to Justine Timberlake, Prince & Dolly Parton while Hazel would watch Signing Time on repeat while eating unlimited pretzels & hummus.

What have the girls taught their sisters? What have their sisters taught them?
After Reese was born & we received her diagnosis, I was flooded with emotions & worry. I remember thinking, “How will this impact Reagan (their big sis)? What will their relationship look like?” I’m so thankful Reagan was only 21 months when Reese was born. We never had to explain Down syndrome to her or watch as she processed the news. It has been unconditional love & 100% acceptance from day one. Reagan does not see disability. Her heart has been molded to accept & value everyone, regardless of ability, just by doing life with Reezel.

When Hazel came home, we had to figure out the best learning environment for her. After carefully weighing her unique learning needs, we decided to send her to a school other than our home school, the place where Reagan attended kindergarten. We were told siblings could transfer to this new school so we gave Reagan the option to switch. Without hesitation, she chose to transfer so she could be with her sister. We reminded her this would mean leaving the friends & teachers she met last year to which she replied, “That’s fine. I’ll make new friends & then I’ll introduce them to Hazel. I’ll help her on the bus & say hi to her in the halls. I hope I can play with her at recess. Her teachers can come find me if they can’t figure out what she’s saying or signing. It’ll be fun.” I think that perfectly sums up Reagan’s feelings. She’s a nurturer & teacher and is fiercely protective of her sisters.

Harper (their little sister) is three going on thirty & she is the official play mate. She’s their model for interactive play & challenges both of them in the imagination department. I smile when I sit back & watch them play because a) it’s adorable & b) Reezel are active participants & engage appropriately. They are experts at playing house, restaurant, school, hide & seek, duck/duck/goose & tag (to name a few) & I credit Harper for much of that. Harper treats them like she does her own friends at preschool, no babying, no exceptions. She instinctively presumes competence, because to her, there’s no reason to assume otherwise.

I think having siblings has been the #1 most important & most effective factor in Reezel’s development. Gross motor, fine motor, speech, communication, interpersonal relationships, behavior, self care skills – there’s not one area of development isn’t modeled by both big & little sister. They are Reezel’s biggest teachers just by being them.

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What is something you want everyone to know about Reese and Hazel?
This has been said time & time again, but it’s worth repeating. Reese & Hazel are more alike than different. They want to be loved, included & valued. I think social media has made it easier to spread that message & it’s the reason our Instagram account is public. I think it’s important to show the world that life with Down syndrome is not only doable, it’s quite beautiful.

What have been good resources for you to learn more about Down syndrome?
The Just Like You film is an amazing resource. Our local Down Syndrome Guild created the film & it’s absolutely wonderful! I personally think following other families on social media & reading blogs is most helpful for a new parent. Statistics are fine, but watching families & individuals do life with Down syndrome is the most powerful.

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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 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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