A virus took over our house for a couple of weeks getting Adam then Kasen. Then we had an ER visit with Ella and she got diagnosed with croup! As you can see they are feeling better and It is EVERYTHING to see these two smiling again!! #kasen❤️ella #dsdn#downsyndromelove
To any parent, having your child meet a milestone is an amazing feeling. To a special needs parent, one who has no idea when, or if, their child will meet certain milestones, I can't even describe the feeling when they do. It is the most exhilarating, squeeze your heart and hold your breath, jump up and down for joy feeling. This little girl has so much determination and perseverance. To those that don't understand, this seems like something small and silly. But to those that do, this is one of the greatest accomplishments ever. Keep pushing baby girl, you're going to do amazing things 💕 #nothingdownaboutit#theupsideofdownsyndrome#dsdn#nothingisgonnastopher#lookmomnohands#imabiggirlnow#rockthatextrachromosome@thedsdn@ndssorg
Quite possibly the best moment in travel history...when the goats wandered up to the gondola stop, Ben didn’t hesitate. Everyone just stood back and watched and smiled, I love watching other people watch him, even the grumpiest travelers can’t help but smile. Keep swiping right, so many good ones.
Miles thought he was playing with bubbles, but the whole time we were doing therapy. 😉 we started oral motor therapy at a very young age around 5 months, and we still are doing it. My little cutie pie.
今年もチャリティTシャツ絶賛発売中(@jammin_kyoto )！24日まで発売しているそうですので、欲しい方はお早めに♫ 毎年デザインが変わり、2016年は葉っぱ。2017年は自転車。2018年は家。そして今年のテーマは時計だそうです。最初の２枚の写真は去年アンちゃんママが買った🏠がテーマのシャツです。毎年デザインがとても可愛いですね！
Did you know that March is Down Syndrome Awareness Month in Japan? Many amazing events take place between February and April, but one thing that everybody always looks forward to is the T-shirts! For the past four years, the Japan Down Syndrome Society has collaborated with the clothing brand “JAMMIN” (@jammin_kyoto ) in order to create Charity T-Shirts to help spread awareness and raise understanding about Down Syndrome. (Part of the proceeds from the T-shirts are donated to the Japan Down Syndrome Society.)
The keyword for the design concept of these T-shirts is “three.” The drawings on each of the T-shirts represent the 23 pairs of chromosomes that we are born with. One of these chromosome pairs is unique because it has three copies, not two.
In 2016, two leaves were used to represent each of the chromosomal pairs, except for the 21st which has three leaves. In 2017, the design featured bicycles and one tricycle. In 2018, the T-shirt design showed houses with two windows and one house with two windows + one door. This year (2019), clocks were used to represent the chromosomes.
The 2019 design contains the hope that we will all live life to the fullest and make every single moment count. In this design there are 23 different clocks. If you look closely you will see that the 21st clock (the only clock with three hands) shows the time "3:21.” The theme from Down Syndrome International World Down Syndrome Day 2019 “Leave no one behind” is also included on the bottom-right hand corner of the T-shirts.
Anne has mom’s T-shirt from 2018 on in the first two pictures. Don’t worry... We ordered a T-shirt for Anne this year in her size!😂 We can’t wait to get our 2019 shirts! ☺️❤️👕
Note to those of you who live outside of Japan: These T-shirts cannot be shipped internationally. We just wanted to share with you some of the things that are taking place over here to spread awareness!!!
Sometimes I wonder why God decided to bless us with this bonus kid, 17 1/2 years after his sister. After doctors had told us that having more kids was not possible.
I believe that things happen for a reason. There is a story here, and someday I’ll be able to share it. Both my kids came along at times when I needed them. All I know is that I’m lucky in so many ways. And thankful. .
.📸: Beautiful Pieces Photography .
We’re doing a preorder campaign for 3/21 in honor of our son with Down Syndrome that will begin shipping the first week of March. The three arrows represent the chosen few with three chromosomes. $5 from each sale will go to The Down Syndrome Association of Greater Charlotte and $1 will go to the Down Syndrome Diagnosis Network. Show some love! Link in bio. #jeremiah15#downsyndrome#dsdn#downsyndromassociationofgreatercharlotte#upsyndrome
I had to bribe him with Dole Whip to wear his Mickey Ears. Did you know that there’s a new place next to the Jungle Cruise that has Raspberry and Orange Dole Whip now too?!? #themoreyouknow🌈 #elienhancesmylife
Did you know?!? DSDN has a subgroup for LGBTQIA parents raising kiddos with Down syndrome. If this is the group you have been looking for, send an email firstname.lastname@example.org and request to join.
DSDN strives to meet the needs of as many of our parents as possible through both birth groups and subgroups. If you have not yet seen a complete list our available subgroups, go here for more information: https://www.dsdiagnosisnetwork.org/resources-for-dsdn-families
Ones you can count on! Shoutout to @thedsdn because we’ve been connected to the worlds best people! Peep these two kiddos shirts! @ourupswithdown surprised us with this Best Buds onesie and I’m in love with it. I literally can’t wait to meet these people in real life! 🤜🏼🤛🏻 Please make Berdie pounding a goal in life. *working on that with Ryan! 😆
An extra special going home announcement from Owen’s Rockin’ parents ⭐️ “ 🎶 My name is Owen 🎶
🎶 and I’m goin’ home today! 🎶
Hi there friends, Owen here. I’m so excited to be going home today! My name means ‘little warrior’ and that’s just what I am! By the way, I have an extra chromosome, which makes me extra special. I hear this is most commonly referred to as Down syndrome. Mommy and Daddy prefer to say T21, short for Trisomy 21, which is the the result of a third copy of the 21st chromosome. Mommy and Daddy have known this since I was 12 weeks along. If they didn’t tell you, it’s not because you aren’t a dear friend to them, they just were too busy celebrating my life.
Oh, and my middle name is also very special. It’s to honor Mommy and Daddy’s dear friend Kirk, who I won’t get to meet while being a bad ass here on earth, but we all know he’s watching from above. Love that guy. #babyowenkirk” welcome to the family! #downsyndrome#dsdn#newborn#rockstar
Guess who started swim lessons!?! 🏊♀️Addi had such a blast being in the pool. We kicked, splashed, and chest floated... We may have to work real hard on blowing bubbles but The Joy on her face was priceless! She probably thought it was an oversized bathtub.🛁 Anyone else doing swim lessons? How early did y'all start?
Our Lovely Lily Mae is going back to the helmet doctor today. We'll find out if we need to get another helmet to help her Plagiocephaly.
Plagiocephaly - very common and very treatable. It causes a baby's head to have a flattened appearance.
The first helmet did so much good and we already know how cool she looks wearing one 😎 wish us luck!
💃 favorite teal romper from @fineranddandy
Reposted from @thedsdn - A heartfelt reflection from a Rockin’ mom. Can you relate? “Out of all of the photos I post of Malia, this photo makes me so emotional because this was the exact moment I knew she was going to have Down Syndrome. The second she came out and they took her to clean her up I asked “Does she have Down syndrome?” No one heard me so instead I asked “Is she okay?” I felt guilty for those being my first words, even if only I heard it . Once they put her on me for skin to skin I took this photo and after looking at it, I went into a daze feeling. I wasn’t ashamed, or embarrassed, but the photo itself was....I don’t know what word to use...Revealing? Confirmation? Sensitive? Raw? I don’t know. I don’t know why I felt that way about it. Does that make sense? Anyway, every time I would post a photo of Malia, I would skip this one. Thinking the world wouldn’t be able handle the photo the way I would’ve liked. Regardless, I cherish this photo more than anyone will ever know.
I figured it was time for me to finally share this photo with everyone because someone out there is receiving a prenatal or birth diagnosis and I want to tell you that it’s okay, maybe not at first, or even for a while- but it will be okay. Of all the parents, this extra special gift chose you 💗” Tiffany Velasquez, Malia’s rockin’ Mom ⭐️
#downsyndrome#dsdn#dsawareness#downsyndromeawareness✒✒✒What are your thoughts?✒✒✒
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And fellow civil rights activists:
One year ago today we got our confirmation that you, my little darling have down syndrome! But it really did not matter to us as you are perfect in every single way. The only thing I regret now looking back is not speaking out for you sooner to the medical team, that DR coming in to say “I’m sorry” when there really is nothing to be sorry about!! So I thought I’d speak up now... Dear DR I’d like to introduce to you my beautiful girl Harper, she’s the one you were sorry for, she’s the one who was referred to as the ‘challenging child’ - she’s the one you gave me and adoption leaflet for, she’s the one who I was told ‘wouldn’t achieve her milestones when compared a normal child’. Well let me tell you something about my beautiful Harper. She can, she will and she did. I have not been sorry for one second about Harper being in my life, all she has done is bring us more joy and happiness than she will ever truly know. This past year we have loved seeing her grow stronger, holding her head up at just 5 weeks, rolling over at 8 weeks, smiling at 4 months, learning to feed her self at 6 months, getting onto all fours at 8 months, sitting up independently at 11 months and clapping at 12 months. So next time you’re faced with ‘ breaking bad news’ STOP for one second and remember Harper, she is not just down syndrome, she’s someone’s baby, she’s a little girl, and she’s perfectly normal. So yes tell the parents their child has down syndrome but don’t be sorry, show them what DS truly is, how much happiness there child will bring to their life’s, tell them what their child will achieve, with support, love and joy, as these children of ours are stronger than you think. So don’t rule them out before they have been given a chance to shine! And please remember to say ‘congratulations’ as they deserve the same respect as every other child gets!
Going to see Kyson’s lung doctor today. We’ve been praying that his lungs have developed to the point where he doesn’t need the oxygen anymore! We’re also meeting his heart surgeon so that he can evaluate him. Please help us pray that God gives the doctors guidance to make the right decisions for our precious baby! “But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him.”
Honestly, I don’t have words for this ball of cuteness.
She wanted me to take this picture, the smile all on her own, the hand on the hip, all of it.
Just last night, Kyle and I were saying how we can’t believe this is the same girl we met in China. Love can do that, change someone.
Although, it’s not been the easiest journey so far, I’m so grateful. Beyond grateful actually!
We were discharged and we are HOME! 👏🏼🙌🏼🤗😭😍 Wyatt left the hospital with a brand new heart❤️! Words will never be able to describe how thankful we are to have this surgery behind us and to be holding our sweet baby again at home! Wyatt is a warrior!!!!
Exactly one week ago during these hours, our sweet boy was having his open heart surgery and the worry, sadness and anxiousness was hard to push aside. Handing him over to the medical team was gut wrenching, but we knew having this surgery would save his life and we put our trust in the Surgeon and her medical team. From the moment I posted that his surgery had started, we were flooded with prayers, thoughts, love and support. We did not cry out for help alone. Y’all were there too! Thank you for covering us with your prayers and love this past week! We felt it in the darkest moments and even though we didn’t get a chance to respond to everyone, we are SO thankful and it meant the world to us😭!
We still have a long road ahead of us with Wyatt and we are hoping his recovery will go smoothly. Moving forward, we will have more appointments, there were changes with his medications and more added. So much to still learn. We were so impressed with our Surgeon and her medical team at Vanderbilt Children’s Hospital. There was so much to learn before coming home and to be honest it was overwhelming, but they did everything they could to educate us. We were very pleased overall with our experience there! Stepping outside after a week of being inside the hospital was a breath of fresh air for me and I felt Gods presence in that moment. I’m exhausted and miss my babies and it feels good to be home! It’s terrifying to leave knowing that we are in charge now, but we have a new found strength that Wyatt has filled in us! We will continue to share our journey moving forward, and we hope that anyone that has to go through this can read our experience. We are so thankful for Wyatt’s new heart and his precious life that will continue to bring joy to others! God is so good!! He has shown up in so many ways, it is impossible to deny he is the orchestrator! #heartwarriorwyatt#heartbaby#chdawareness@thedsdn