who knew that laying in the big bed and watching morning cartoons with your sisters would be so exciting?! 💕💙💕
It's time to meet another Ds-Connex Champion: introducing Corban!
Corban's family is part of @dsaco_cbus
, and his mom Nicole shared: "From a doctor who said that he could possibly not amount to much, everyday is an accomplishment that we celebrate. Corban was born with bilateral clubfoot, AVSD that resulted in 4 holes in his heart and a missing valve that required heart surgery at 5 months, and Down syndrome. He is now 22 months old and just like any 'normal' toddler. He plays and runs, he laughs and tricks us, and loves to dance. He cries when he is sad, and he loves more than any other human being I know. God sure blessed our family with this little guy! 💕" Blessed, indeed! Congratulations, Corban! You are a champion!
To find out how you can submit a photo and story for our yearlong Ds-Connex Champions campaign (and also enter to be our next randomly drawn gift card winner on 5/21!), please visit our blog (link in bio). #downsyndrome #downsyndromeawareness #dschamps #champions #theluckyfew #seetheability #downsyndromelove
Hej från SVT-huset!
I höst sänds ett program som vi medverkat i idag. Programmet handlar om en familj på 40-talet vars äldsta son föddes med Downs syndrom. Vi blev tillsammans med andra föräldrar, barn och ungdomar intervjuade om hur vårt liv ser ut idag.
Today we have been interviewed for a Swedish TV-programme!
#ournormal #ournormal_org #intesåkonstigt #downssyndrom
I needed some cheer on this gloomy day! I feel like its rained 75 times in Nashville the last 3 months!
photo by @eva_and_tissy
— I LOVE THIS ACCOUNT. If you love color and all things bright and cheery, go show them some love!
It’s annual review day! During an annual IFSP review, we go over Kerrigan’s goals from last year and see which ones she mastered and which ones we still need to work on. She goes through some testing each year to gauge where she’s at developmentally that helps us see what areas might have had big leaps or some delays through the year to help guide us as we decide on more goals for the next year. This year we also add a transitional goal because next May she’ll be THREE and eligible for preschool! Part of what I do in preparation for these meetings is sit down and list out all of the physical, social, cognitive, and speech skills I see Kerrigan developing and using. Then I think about which areas I want to capitalize on for her therapies over the next year! Her speech progress since just October is INCREDIBLE. Back then she was only saying “dada” and some basic vowel sounds. .
#downsyndrome #downsyndromemama #downsyndromemom #trisomy21 #t21 #trisomy21mom #specialneedsmom #specialneedsparenting #earlyintervention #ifsp #speechtherapy #upsyndrome #nothingdownaboutit #theluckyfew
[Setting: therapy Tuesday afternoon]
Ami-tan: ‘xcuse me, I’m just gonna tip...toe... through heeeeere. Oh hey baby, were you guys doing something..?
WP: TAN-TAN! ::waving furiously, ignoring therapist::
Ami-tan: oh hey girl, who’s your friiiieeeend..?
Me: Ami-tan! Get out of here!
Ami-tan and WP: ::ignore me and begin to keke about who knows what:: Me: ::angry whisper:: Ami-tan!!! 😠
Ami-tan: we’ll talk later. Smooches! ::jumps over couch and begins meowing loudly in the bedroom::
WP: ::laughing hysterically::
#norespect #16months #13years #fursibling
Hey everyone... please go follow our new Non-profit organization @down2dance_
. These two little special boys brought two families together to join forces and change the world around them. We believe everyone of all abilities and walks of life should be given the opportunity to dance and shine...and unfortunately that’s not the case sometimes for our kids with extra chromosomes. We want to provide free dance classes and performance opportunities for those with Trisomy 21(Down Syndrome)!! Please follow us and consider supporting us in our mission. #downsyndromerocks #friendship #trisomy21 #blessed #theluckyfew #danceisforeveryone #letsdance #family #extrachromosome #salsa #hiphop
At one moment in time when I felt exhausted, frustrated, and hopeless during her nearly six-week tenure in the NICU (which I realize is just a drop in the bucket for many babies who need to be in the NICU—I think ANY amount of time a newborn stays there feels like an eternity for the families involved), I legitimately thought Mavis would never get out, and that she’d actually be going to preschool in the NICU. BUT this lil peanut has come a long way from that feeding tube, incubator, and myriad cords and monitors attached to her. I don’t know if the world is ready, but here comes Mavis! Her incredible Mercy Health NICU peeps, Ms. Susanne, and early intervention dream team have brought her this far, and for that our family thanks them. She’s in such good hands with my colleagues at Nashold now as well. Happy third birthday AND first day of preschool, Mavi! And though she be but little, she is fierce.
#mavisthetoddler #homieswithextrachromies #rockthe21 #lifewithds #theluckyfew #cantstopwontstop #nothingdownaboutit #inherowntime #tinybutfierce #lifeisbetterwithyou #threenager #preklife
Everyone has to start somewhere. I remember a lot of my "first steps" especially as an adult. They are hard, and things spun through my head like, "What will people think." or "is this even valuable." But then I would look at Grace. Someone who's first steps are so much more challenging. This girl has had to push, crawl and reach for EVERY single thing she has mastered.
Every time she is given a challenge that is holding her back from what she wants to do she tries, and tries again. She knows when she isn't making the mark. She observes, processes......and tries again.
She never ever gives up on what she wants. For me? I always tell myself, if you want your kids to reach and run for their goals you better be the example of that.
Everything starts with ONE. Sometimes that is just you. But all you need is ONE person to join you and you are a leader. You have a movement. Thats not to hard right?
So again.....everyone starts at the beginning. Get comfortable with that. Plant yourself in good soil and grow.
Today he’s 10. He’s funny, smart, curious, determined & always talking. He loves his friends, superheroes, his sister, Youtube & donuts. And he’s probably everyone’s favorite Harper. We couldn’t love him more. Happy Birthday Jordan! #doubledigits #birthdayboy #theluckyfew
They have a dance party every morning and every night. Daddy says this is Hammy’s theme song. As soon as Daddy turns it on Hammy drops whatever he’s doing and runs to find Daddy so they can dance. It makes my heart happy 😊 #worthy #danceparty #theluckyfew
The next morning Evan arrived early. We continued to wait for the results. Every time a doctor would walk down the hall I would hold my breath. I'd watch through the room window to see if they were coming to our room or turning off into another new mothers birthing suite. At this point I couldn't sit much, I stood over Rory as she laid under her blue light, while being treated for jaundice. She was so sweet lying there holding her tiny hands together, her long fingers all intertwined and her delicate ankles crossed. I didn't know her yet but I loved her deeply.
I calmly told Evan the results were most likely positive and we needed to tell our families what was going on. He called his parents and I called my father. The rallying a father offers when their child is in crisis is like nothing I've seen. Evans dad and my father were so encouraging. Our mothers were caring and compassionate. Looking back it was a beautiful rare experience to be an adult and need your family in such a raw way, being so aware of their efforts to show up and push you forward.
When the Doctor finally arrived, Evan and I held one another, bracing for the outcome. With Evans arms wrapped around me and my hand on Rory's head, I prayed as the words were leaving the Dr. lips.. I kept asking God to be with us. Over and over I said those words in my mind. I know Evan was holding me but it felt like we were being held. Like time stopped. A silence was present despite the noise of our minds, the hospital and the voices in the room. The positive results tenderly cut through that silence as we received confirmation that our baby tested positive for Trisomy 21. #rorysbirthstory
Well I definitely have two little divas on my hand they were tag teaming me all day yesterday, however they napped in the evening together at the same time thanks to some baby massage and baby classical music I’m slowly starting on their routine let’s hope their as good as their brother with it #routine
Foot/ankle B R A C E S in full effect, and happier than ever.
You know, there have been several instances where I tell people of Cooper’s need for these special orthotics and they give me a sad face and/or feel pity. By the grace of God I’ve learned to smile and kindly remind them not to feel bad. After all, these orthotics are nothing short of a true blessing. They will give a Cooper strength, support and provide him with proper posture. We are so thankful for them!
No need to feel sorry, this boy will rock em’ just as he does everything else.