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Advocate. A title that comes with being a special needs mom whether you like it or not. One that I once felt put out by but now wear like a badge of honor. One that if I think to hard into it, scares me for the future. God only gives you what you can handle, and sometimes that’s what I’m afraid of. 
Most days advocating means following Amelia’s lead as she goes through life leaving a trail of magic (and a mess) everywhere she goes. Then there are the extra special days when someone asks me if I’m Amelia’s Mom because they heard about her smile or when a new Mom reaches out and thanks me for sharing my daughter who single handedly gave them hope. Or the days when we followed our hearts and made a decision that was best for our family and Amelia came out on top. Those are the days being an advocate feels like my sole purpose. 
But like most of life’s endeavors, advocating looks different all the time. Sometimes I forget that being an advocate means more than sharing cute photos of my kid. That outside Amelia’s army, lives a world who sees circumstance before reality. A world that counts what we don’t have before what we do. A world that still feels sorry for us...For her. 
There are days advocating means having a small amount of courage to say to a friend or complete stranger, “it’s not ok to say that.” In hopes of a welcoming future for your baby. Other days it means having huge courage and trusting your Mama intuition over the medical professionals. 
I thought that by now I would be a better advocate.  I thought three and a half years into this, I would be better at trusting my motherly instincts. I thought I would stop questioning what feels like an attack against her extra chromosome and know what’s just part of being a parent to any kiddo- extra chromosomes or not. I thought that by now it would just come naturally. 
CONTINUED in comments ⬇️
Advocate. A title that comes with being a special needs mom whether you like it or not. One that I once felt put out by but now wear like a badge of honor. One that if I think to hard into it, scares me for the future. God only gives you what you can handle, and sometimes that’s what I’m afraid of. Most days advocating means following Amelia’s lead as she goes through life leaving a trail of magic (and a mess) everywhere she goes. Then there are the extra special days when someone asks me if I’m Amelia’s Mom because they heard about her smile or when a new Mom reaches out and thanks me for sharing my daughter who single handedly gave them hope. Or the days when we followed our hearts and made a decision that was best for our family and Amelia came out on top. Those are the days being an advocate feels like my sole purpose. But like most of life’s endeavors, advocating looks different all the time. Sometimes I forget that being an advocate means more than sharing cute photos of my kid. That outside Amelia’s army, lives a world who sees circumstance before reality. A world that counts what we don’t have before what we do. A world that still feels sorry for us...For her. There are days advocating means having a small amount of courage to say to a friend or complete stranger, “it’s not ok to say that.” In hopes of a welcoming future for your baby. Other days it means having huge courage and trusting your Mama intuition over the medical professionals. I thought that by now I would be a better advocate. I thought three and a half years into this, I would be better at trusting my motherly instincts. I thought I would stop questioning what feels like an attack against her extra chromosome and know what’s just part of being a parent to any kiddo- extra chromosomes or not. I thought that by now it would just come naturally. CONTINUED in comments ⬇️
@Regranned from @tolarnee -  STORIES OF LOST CHERRIES
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The naivety. The guilt. The pain. The lessons.
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Excerpt from my forthcoming anthology Phoenix T21
.  #Phoenix #T21
#poetsofinstagram 
#poetry 
#freedom
#innocence
#writersofinstagram 
#writeanything
#africanwriters
#nigerianpoets
#anthology - #regrann
Chwila relaksu między wizytą i endokrynologia i gastroenterologa... nie nudzimy się 😃😃😃
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#szymekstory #t21 #zespoldowna #lovedoesntcountchromosoms #downsyndrom #ilovemyson #jestembojestes #instaboy #miloscnieliczychromosomow #zespolaczek #t21rocks #instamatki #wcześniak
A snapshot of our day-to-day. Coraline and me in a coffee shop recently! We love taking Coraline out to coffee shops so she can look about at new surrounds. We always have an eye that people sat near us are well. In our day-to-day we meet people for a catch up in a café, we meet people for walks and people come to ours bit by bit to visit. We don’t take Coraline to baby groups or Children’s Centres on the advice of her Cardiologist due to risk of infection for her. Whenever we meet anyone or they come round we ask, “do you have a cold or does anyone at home have a cold?” People are amazingly understanding! This is all until after her heart operation, date TBC. We’ve been away twice I think since she was born, and this was a stop on the drive home after our first trip away to Suffolk at Christmas. One day we dream of taking her round the world! 🌍 #downsyndromeawareness #nodownaboutit #ourstory #t21
A snapshot of our day-to-day. Coraline and me in a coffee shop recently! We love taking Coraline out to coffee shops so she can look about at new surrounds. We always have an eye that people sat near us are well. In our day-to-day we meet people for a catch up in a café, we meet people for walks and people come to ours bit by bit to visit. We don’t take Coraline to baby groups or Children’s Centres on the advice of her Cardiologist due to risk of infection for her. Whenever we meet anyone or they come round we ask, “do you have a cold or does anyone at home have a cold?” People are amazingly understanding! This is all until after her heart operation, date TBC. We’ve been away twice I think since she was born, and this was a stop on the drive home after our first trip away to Suffolk at Christmas. One day we dream of taking her round the world! 🌍 #downsyndromeawareness  #nodownaboutit  #ourstory  #t21 
Selamat sore Ayah & Bunda..
ayoo siapa yang ADS dan keluarganya mejeng di postingan yang ini?

kenalan lagi yuk sama yang lain 😁😘
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geser ke kanan buat #fototemakeluarga yang lebih banyak ya Ayah &  Bunda!
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AKU ADA, AKU BISA!
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#DownSyndrome #DownSyndromeIndonesia #downsyndromeworld #Trisomy21 #T21 #potads #happykids #littlewarriors 
#extrachromosome21 #ds #downsyndromeinternational #SPI4 #Sindromadown #sahabatpotadsindonesia4 #downsyndromerocks #happymommy #happydaddy #goingupwithdownsyndrome #everlastinglove #happyfamily #babies #family
Selamat sore Ayah & Bunda.. ayoo siapa yang ADS dan keluarganya mejeng di postingan yang ini? kenalan lagi yuk sama yang lain 😁😘 . geser ke kanan buat #fototemakeluarga  yang lebih banyak ya Ayah & Bunda! . AKU ADA, AKU BISA! . #DownSyndrome  #DownSyndromeIndonesia  #downsyndromeworld  #Trisomy21  #T21  #potads  #happykids  #littlewarriors  #extrachromosome21  #ds  #downsyndromeinternational  #SPI4  #Sindromadown  #sahabatpotadsindonesia4  #downsyndromerocks  #happymommy  #happydaddy  #goingupwithdownsyndrome  #everlastinglove  #happyfamily  #babies  #family 
Uykusuz olmasına rağmen korktuğum başıma gelmedi ve Elis derslerde gayet iyiydi😍 çok video ve fotoğraf çekiyorum ancak hepsini paylaşmam mümkün değil bıkarsınız ana sayfada bizi görmekten🙈 1 dakikaya sığsın diye parçalardan kolaj yapıyorum, gelişim durumumuz ve evde çalışmak isteyenlere örnek olması açısından👍 
Kavrama becerisi azken birden arttı ve hatta çok güçlü kavrayıp bırakmıyordu, şimdi biraz daha dengelendi, bırak-ver komutlarıyla onları da oturtmaya çalışıyoruz, içinden çıkar zaten aldı başını gidiyor😃 nesne devamlılığı zayıftı, onda da güçlenme var👍 bir video daha paylaşacağım bugünkü derste yaptıklarımızdan😊
#Elis #downsendromu #downsyndrome #dsdn #theluckyfew #nothingdownaboutit #morealikethandifferent #extrachromosome #47kromozom #t21 #t21love #Elis13aylik #baby #babygirl #babylove #instababy #instagram #video #videoofday #babyvideo #özeleğitim #rehabilitasyon #kucukadimlar
Uykusuz olmasına rağmen korktuğum başıma gelmedi ve Elis derslerde gayet iyiydi😍 çok video ve fotoğraf çekiyorum ancak hepsini paylaşmam mümkün değil bıkarsınız ana sayfada bizi görmekten🙈 1 dakikaya sığsın diye parçalardan kolaj yapıyorum, gelişim durumumuz ve evde çalışmak isteyenlere örnek olması açısından👍 Kavrama becerisi azken birden arttı ve hatta çok güçlü kavrayıp bırakmıyordu, şimdi biraz daha dengelendi, bırak-ver komutlarıyla onları da oturtmaya çalışıyoruz, içinden çıkar zaten aldı başını gidiyor😃 nesne devamlılığı zayıftı, onda da güçlenme var👍 bir video daha paylaşacağım bugünkü derste yaptıklarımızdan😊 #Elis  #downsendromu  #downsyndrome  #dsdn  #theluckyfew  #nothingdownaboutit  #morealikethandifferent  #extrachromosome  #47kromozom  #t21  #t21love  #Elis13aylik  #baby  #babygirl  #babylove  #instababy  #instagram  #video  #videoofday  #babyvideo  #özeleğitim  #rehabilitasyon  #kucukadimlar 
Herzfehler.
30-50% der Kinder mit #trisomie21 haben einen angeborenen #herzfehler. Der „Klassiker“ darunter ist der atrioventrikuläre Septumdefekt, kurz #avsd. Dabei fehlt ein Großteil des Septums. Das ist die Wand, die das Herz in eine rechte und eine linke Hälfte teilt. Fehlt diese Trennung, folgt das Blut nicht seinem eigentlich vorgegeben Weg und versorgt den Körper nicht optimal mit Sauerstoff. Belässt man diesen Herzfehler, kommt es langfristig zu einer Schädigung von Herz und Lunge.
Gestern waren wir in der Kinderkardiologie der Uniklinik, wo regelmäßig Ultraschall und EKG von A’s Herz gemacht werden, da sie eben diesen Herzfehler hat. Im Jahr 2018 steht uns demnach noch die #operation bevor. Bisher entwickelt sich aber alles sehr positiv und besser als erwartet, sodass wir mit der OP noch ein paar Monate warten können und sollen.
#kaffee #herz #fehler #nichtperfektaberegal #downsyndrom #extrachromosome #t21 #kardiologie #kinderkardiologie #latteart #ecm #plumskaffee #butfirstcoffee #crema #ichübenoch
Herzfehler. 30-50% der Kinder mit #trisomie21  haben einen angeborenen #herzfehler . Der „Klassiker“ darunter ist der atrioventrikuläre Septumdefekt, kurz #avsd . Dabei fehlt ein Großteil des Septums. Das ist die Wand, die das Herz in eine rechte und eine linke Hälfte teilt. Fehlt diese Trennung, folgt das Blut nicht seinem eigentlich vorgegeben Weg und versorgt den Körper nicht optimal mit Sauerstoff. Belässt man diesen Herzfehler, kommt es langfristig zu einer Schädigung von Herz und Lunge. Gestern waren wir in der Kinderkardiologie der Uniklinik, wo regelmäßig Ultraschall und EKG von A’s Herz gemacht werden, da sie eben diesen Herzfehler hat. Im Jahr 2018 steht uns demnach noch die #operation  bevor. Bisher entwickelt sich aber alles sehr positiv und besser als erwartet, sodass wir mit der OP noch ein paar Monate warten können und sollen. #kaffee  #herz  #fehler  #nichtperfektaberegal  #downsyndrom  #extrachromosome  #t21  #kardiologie  #kinderkardiologie  #latteart  #ecm  #plumskaffee  #butfirstcoffee  #crema  #ichübenoch 
Who needs to be watching the beach sunset when you can watch this kids smile ! ! ! 🤗 🏝 ❤️ @sheratonfijiresort 🌴  #emmysbrotherleo #sunset #daysend #babysmiles #smiles #lovethiskid #smiley #changingthefaceofbeauty #ds #downsyndromelove #theluckyfew #becauseofyou #love #mumandson #perfect #t21 #upsyndrome #lifeisbetterwithyou #homiewithanextrachromie #lovinglife #clouds #sky
京都へてんかん通院の旅
【スポットとーま】2018.1.23
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曇天寒空の中、
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帰りの電車待ち時間に、駅前広場で遊ぶ。
・
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息子の真似をするのがマイブームの私。
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ドヤ顔をするのがマイブームの息子。
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息子の真似したら、亀みたいになった(笑)
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自分の顔と首の伸びっぷりにウケる(笑)
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昨日久々に光刺激で発作が出ました。
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テレビも近寄っちゃうから、家事する時は今日から封印ー。
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しばらく様子をよくよく見ていきます。
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発作は出たけど、本人はいたって元気でございます😊
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#部分てんかん 
#光刺激 
#ランドセン減薬 
#テグレトール 
#エクセグラン 
#ダイアップ 
#山陰線は国際色豊か 
#外国人の方はベビーカーに優しい 
#ダウン症 #t21 #downssyndrome 
#とーまくん
京都へてんかん通院の旅 【スポットとーま】2018.1.23 ・ 曇天寒空の中、 ・ 帰りの電車待ち時間に、駅前広場で遊ぶ。 ・ ・ 息子の真似をするのがマイブームの私。 ・ ドヤ顔をするのがマイブームの息子。 ・ 息子の真似したら、亀みたいになった(笑) ・ 自分の顔と首の伸びっぷりにウケる(笑) ・ ・ 昨日久々に光刺激で発作が出ました。 ・ テレビも近寄っちゃうから、家事する時は今日から封印ー。 ・ しばらく様子をよくよく見ていきます。 ・ ・ 発作は出たけど、本人はいたって元気でございます😊 ・ ・ #部分てんかん  #光刺激  #ランドセン減薬  #テグレトール  #エクセグラン  #ダイアップ  #山陰線は国際色豊か  #外国人の方はベビーカーに優しい  #ダウン症  #t21  #downssyndrome  #とーまくん 
🌺 6 months old and you sit by yourself! 👏🏼🌺 #trisomie21 #trisomy21 #downsyndrome #downsyndromecutie
#downsyndromebaby #t21 #downsyndromeawareness #cute
Babasina kur yapan bir tavsancik 😊💟#t21 #downsyndrome #melikecik
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夕方、めっちゃ静やなぁと思ったらふたりとも寝てた~😪💤💤
布団からはみ出てるし…(笑)

今のうちに晩ごはん🍚作ってしまおう😁
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#きょうだい #おひるね #息子 #娘 #仲良しさん

#downsyndrome #ダウン症
#t21 #21トリソミー #チーム21
#内反足
Позитив в негативе

Кто такой фотограф? Это волшебник, способный остановить время и передать в кадре красоту, которые другие могут не увидеть.

У нас есть дорогой друг – фотограф Татьяна Козаченко, или просто наша Фея 😁

С первых дней нашей работы она проводит для солнечных детей суперские фотосессии. За 5 лет 18 фотосетов, в которых снялись 38 солнечных детей, 1704 фотографии, вместе проведено 3 фотовыставки! Мы особенно благодарны ей, ведь она раскрыла красоту в наших детях, тогда когда многие их не принимали!

Благодаря Тане, дети привыкли к камере, свободно чувствуют себя во время любых съемок, это помогает им быть раскрепощенными и общительными. Тем более, что наши ребята все как один артисты, для них это очень важно!

Люди видят красивые фотографии и восхищаются: «Какие милые дети! Так позируют!» И только мы знаем, каких усилий нашей фее стоит сделать эти снимки. Сколько времени она ловит удачный кадр или привлекает взгляд ребенка к камере. У Тани даже была производственная травма во время одной из съемок – ради удачного кадра она проползала по полу между детьми, и ударилась зубом о камеру 🙁! Но не переживайте, уже все хорошо )

Благодарны нашей феечке за дружбу и любовь к солнечным детям!

#лучдобрабишкек #синдромдауна #downsyndrome#t21 #инклюзия #солнечныедети
Позитив в негативе Кто такой фотограф? Это волшебник, способный остановить время и передать в кадре красоту, которые другие могут не увидеть. У нас есть дорогой друг – фотограф Татьяна Козаченко, или просто наша Фея 😁 С первых дней нашей работы она проводит для солнечных детей суперские фотосессии. За 5 лет 18 фотосетов, в которых снялись 38 солнечных детей, 1704 фотографии, вместе проведено 3 фотовыставки! Мы особенно благодарны ей, ведь она раскрыла красоту в наших детях, тогда когда многие их не принимали! Благодаря Тане, дети привыкли к камере, свободно чувствуют себя во время любых съемок, это помогает им быть раскрепощенными и общительными. Тем более, что наши ребята все как один артисты, для них это очень важно! Люди видят красивые фотографии и восхищаются: «Какие милые дети! Так позируют!» И только мы знаем, каких усилий нашей фее стоит сделать эти снимки. Сколько времени она ловит удачный кадр или привлекает взгляд ребенка к камере. У Тани даже была производственная травма во время одной из съемок – ради удачного кадра она проползала по полу между детьми, и ударилась зубом о камеру 🙁! Но не переживайте, уже все хорошо ) Благодарны нашей феечке за дружбу и любовь к солнечным детям! #лучдобрабишкек  #синдромдауна  #downsyndrome #t21  #инклюзия  #солнечныедети 
Позитив в негативе

Кто такой фотограф? Это волшебник, способный остановить время и передать в кадре красоту, которые другие могут не увидеть.

У нас есть дорогой друг – фотограф Татьяна Козаченко, или просто наша Фея 😁

С первых дней нашей работы она проводит для солнечных детей суперские фотосессии. За 5 лет 18 фотосетов, в которых снялись 38 солнечных детей, 1704 фотографии, вместе проведено 3 фотовыставки! Мы особенно благодарны ей, ведь она раскрыла красоту в наших детях, тогда когда многие их не принимали!

Благодаря Тане, дети привыкли к камере, свободно чувствуют себя во время любых съемок, это помогает им быть раскрепощенными и общительными. Тем более, что наши ребята все как один артисты, для них это очень важно!

Люди видят красивые фотографии и восхищаются: «Какие милые дети! Так позируют!» И только мы знаем, каких усилий нашей фее стоит сделать эти снимки. Сколько времени она ловит удачный кадр или привлекает взгляд ребенка к камере. У Тани даже была производственная травма во время одной из съемок – ради удачного кадра она проползала по полу между детьми, и ударилась зубом о камеру 🙁! Но не переживайте, уже все хорошо )

Благодарны нашей феечке за дружбу и любовь к солнечным детям!

#лучдобрабишкек #синдромдауна #downsyndrome#t21 #инклюзия #солнечныедети
Позитив в негативе Кто такой фотограф? Это волшебник, способный остановить время и передать в кадре красоту, которые другие могут не увидеть. У нас есть дорогой друг – фотограф Татьяна Козаченко, или просто наша Фея 😁 С первых дней нашей работы она проводит для солнечных детей суперские фотосессии. За 5 лет 18 фотосетов, в которых снялись 38 солнечных детей, 1704 фотографии, вместе проведено 3 фотовыставки! Мы особенно благодарны ей, ведь она раскрыла красоту в наших детях, тогда когда многие их не принимали! Благодаря Тане, дети привыкли к камере, свободно чувствуют себя во время любых съемок, это помогает им быть раскрепощенными и общительными. Тем более, что наши ребята все как один артисты, для них это очень важно! Люди видят красивые фотографии и восхищаются: «Какие милые дети! Так позируют!» И только мы знаем, каких усилий нашей фее стоит сделать эти снимки. Сколько времени она ловит удачный кадр или привлекает взгляд ребенка к камере. У Тани даже была производственная травма во время одной из съемок – ради удачного кадра она проползала по полу между детьми, и ударилась зубом о камеру 🙁! Но не переживайте, уже все хорошо ) Благодарны нашей феечке за дружбу и любовь к солнечным детям! #лучдобрабишкек  #синдромдауна  #downsyndrome #t21  #инклюзия  #солнечныедети 
Tupé de pelu!!! Hoy es la primera vez que no lloré nada...😍😂#nolimits #hastaelinfinitoymasalla #downadiccts #downsindrome #t21 #michinito #miniñolindo
Hoje damos tréguas e só estamos em mimo total mas amanhã caçamos um sorriso. Obrigada a todos pelas mensagens de cuidado. A juju já ouve os pingos da chuva🎉🎉#t21#nothingdownaboutit #extrachromosomeextracute #letsgobaby#youaremysunshine #simsoudespenteada
すでに怖い…。
碧生が図書室で借りてきたけど、なぜこのチョイスか知りたい。
#学校
#図書室
#絵本
#ちょうつがいきいきい 
#怖いけど見たくなる

#ダウン症 #21トリソミー #男の子
#きょうだい #子育て
#downsyndrome #21trisomy #t21
#boy #brothers #childcare
#bookreading #school
This kid starts his first day in grade two next Monday.  Where did that time go?  After picking up his books for the new school year,  we picked up some fresh juice from @bindlestickthestore 
Love dates with the little man in my life ❤

#date #bindlestickthestore #applegingerspinachjuice #healthy #summertreat #midnorth #southaustralia #beattheheat #sohandsome #downsyndromeawareness #t21 #lifeisbetterwithyou #abeautifillife
I think I actually love this thing, Thank you so much @lady_bscloset for the reccomendation, Kel sounds like he is starting to shift the mucas, his cough was mich wetter through the night so here's hoping were turning the corner, I unfortunately have a KIT day so am at work all day today and tomorrow so will be quieter over next couple of days 😘😘 #DownSyndrome #downsyndromeawareness #upwithdowns #theluckyfew #warrior #blessing #downsyndromelove #downsyndromerocks #T21 #trisomy21 #nothingdownaboutit #morealikethandiffernt #baby #cute #luckymumma #blueeyes #instababies #instapicoftheday #followme #igbabies #childrenphoto #beautiful #viking #babyboy #babyspam #instamom #tagsforlikes #proudmommy
I think I actually love this thing, Thank you so much @lady_bscloset for the reccomendation, Kel sounds like he is starting to shift the mucas, his cough was mich wetter through the night so here's hoping were turning the corner, I unfortunately have a KIT day so am at work all day today and tomorrow so will be quieter over next couple of days 😘😘 #DownSyndrome  #downsyndromeawareness  #upwithdowns  #theluckyfew  #warrior  #blessing  #downsyndromelove  #downsyndromerocks  #T21  #trisomy21  #nothingdownaboutit  #morealikethandiffernt  #baby  #cute  #luckymumma  #blueeyes  #instababies  #instapicoftheday  #followme  #igbabies  #childrenphoto  #beautiful  #viking  #babyboy  #babyspam  #instamom  #tagsforlikes  #proudmommy 
Las puertas de Cambrils siempre están abiertas para que nos conozcas. Atendemos individualmente porque cada familia es importante. Jornada de puertas abiertas diaria #colegios #educación #educacionespecial #puertasabiertas #inclusión #discapacidad #familiacambrils  #masqueuncolegio #educacionespecial #todossomosespeciales #equipo #discapacidadintelectual #sindromededown #down21 #masquedown #siempresepuede #trisomy21 #t21
Buenos días a todos!!!
Marieta sabe distinguir muy bien cuando un juguete es para "trabajar" y cuando es sólo para jugar...😊😊
Con estos #sensorycircles "trabajamos" la psicomotricidad fina y gruesa,  exploramos con los pies y las manos, aprendendemos los colores... y todo eso sin que ella tenga la sensación de que es "una sesión de trabajo"... ¡objetivo conseguido! ✔
#LIFEisbetterwithyou
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#supermarieta #estimulacionsensorial #sindromededown #downsyndrome #dsawareness #downsyndromeawareness #spreadingawareness #t21 #rockingt21 #downsyndromelove #downsyndromerocks #alittleextra #downrightperfect #theluckyfew #changingthefaceofbeauty #downaddicts #downlovers #familiadown #mundodown #extrachromosomeextracute #chromosomecutie #nothingdownaboutit #masupquedown #upsindrome #extralove #extracute #youaresimplythebest
Buenos días a todos!!! Marieta sabe distinguir muy bien cuando un juguete es para "trabajar" y cuando es sólo para jugar...😊😊 Con estos #sensorycircles  "trabajamos" la psicomotricidad fina y gruesa, exploramos con los pies y las manos, aprendendemos los colores... y todo eso sin que ella tenga la sensación de que es "una sesión de trabajo"... ¡objetivo conseguido! ✔ #LIFEisbetterwithyou  . . . #supermarieta  #estimulacionsensorial  #sindromededown  #downsyndrome  #dsawareness  #downsyndromeawareness  #spreadingawareness  #t21  #rockingt21  #downsyndromelove  #downsyndromerocks  #alittleextra  #downrightperfect  #theluckyfew  #changingthefaceofbeauty  #downaddicts  #downlovers  #familiadown  #mundodown  #extrachromosomeextracute  #chromosomecutie  #nothingdownaboutit  #masupquedown  #upsindrome  #extralove  #extracute  #youaresimplythebest 
I told her she was being a tiny dictator and stallin' but she didn't laugh.
I told her she was being a tiny dictator and stallin' but she didn't laugh.
No signs of being sleepy yet😥😟 #activebaby #mimitime #yeahright #downsyndromecutie #t21 #downrightperfect #downsyndromerocks 💙💛
Trip to the ER, Take 2 🎬
Got a text today stating that Addi was projectile vomiting while she was napping and that it was Green. Obviously not normal, called The Specialist, he said that she had to go to the ER. We are officially one week off her liver medicine and if she is vomiting bile the concern is that it's not processing through her tiny little buddy... So x-rays, three different attempts to find a vein and stick her,  IV, blood drawn, liver panel, GI test with Tracer, 7 hours later and we finally going home!! 😷💙💛🤤😢 here's to hoping she feels better soon.
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#sick #er #mylove #myheart #thatface #meltsmyheart #downsyndrome #downrightperfect #theluckyfew #dsdn #homiewithanextrachromie #uniquelyperfect #nothingdownaboutit #beautifulconditions #ssparents #lifeisbetterwithyou #upsyndrome  #t21 #fearfullyandwonderfullymade #changingthefaceofbeauty #motherhoodrising #babymodel #brandrep #everything
Trip to the ER, Take 2 🎬 Got a text today stating that Addi was projectile vomiting while she was napping and that it was Green. Obviously not normal, called The Specialist, he said that she had to go to the ER. We are officially one week off her liver medicine and if she is vomiting bile the concern is that it's not processing through her tiny little buddy... So x-rays, three different attempts to find a vein and stick her, IV, blood drawn, liver panel, GI test with Tracer, 7 hours later and we finally going home!! 😷💙💛🤤😢 here's to hoping she feels better soon. . . . #sick  #er  #mylove  #myheart  #thatface  #meltsmyheart  #downsyndrome  #downrightperfect  #theluckyfew  #dsdn  #homiewithanextrachromie  #uniquelyperfect  #nothingdownaboutit  #beautifulconditions  #ssparents  #lifeisbetterwithyou  #upsyndrome   #t21  #fearfullyandwonderfullymade  #changingthefaceofbeauty  #motherhoodrising  #babymodel  #brandrep  #everything 
#365DíasPorteando Año 1, Día 130
Día malazo, con inicio de rinitis #orwhatever. El único rato feliz de hoy fue el paseíto con mamita camino a la terapia 💓
#momentosiroue 
#EnPerúSePortea #PorteaPerú
#PorteoCool #Porteo #Portabebés #babywearing #t21 #sindromedeDown #PonUnaAsesoraDePorteoEnTuVida ❤
1️⃣8️⃣ M O N T H S! This month especially Camila has been learning a whole lot of new things. Shes looking and acting like such a big girl. She weighs 20 lbs and gosh do my arms feel it! She’s talking and talking a lot more & I wish I could understand all she has to say 🤔 She’s moving around on her play mat from corner to corner with a butt shuffle that she learned all on her own. If she’s determined enough she can manage to sit up by herself 😬 Today we brought out her walker and she was finally moving her feet forwards and backwards. She’s not crawling yet and feeding continues to be a challenge for her but we’re not giving up and I know she’ll be eating soon. 📸 photo credit to @olmedojan thanks for capturing this moment! .
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#misscamilafaith #lifeisbetterwithyou #t21  #trisomy21 #downsydrome #trisomy21rocks #ds #dsdn #lifewithds #downsyndromecutie #downsyndromlove #downsyndromerocks #theluckyfew #downrightperfect #upsyndrome #chd #chdawareness #chdwarrior #zipperclub #downsyndromeisbeautifull  #alllifeisprecious #morealikethandiffrent #chromosomecutie #changingthefaceofbeauty #upwithdown
1️⃣8️⃣ M O N T H S! This month especially Camila has been learning a whole lot of new things. Shes looking and acting like such a big girl. She weighs 20 lbs and gosh do my arms feel it! She’s talking and talking a lot more & I wish I could understand all she has to say 🤔 She’s moving around on her play mat from corner to corner with a butt shuffle that she learned all on her own. If she’s determined enough she can manage to sit up by herself 😬 Today we brought out her walker and she was finally moving her feet forwards and backwards. She’s not crawling yet and feeding continues to be a challenge for her but we’re not giving up and I know she’ll be eating soon. 📸 photo credit to @olmedojan thanks for capturing this moment! . . . . . #misscamilafaith  #lifeisbetterwithyou  #t21  #trisomy21  #downsydrome  #trisomy21rocks  #ds  #dsdn  #lifewithds  #downsyndromecutie  #downsyndromlove  #downsyndromerocks  #theluckyfew  #downrightperfect  #upsyndrome  #chd  #chdawareness  #chdwarrior  #zipperclub  #downsyndromeisbeautifull  #alllifeisprecious  #morealikethandiffrent  #chromosomecutie  #changingthefaceofbeauty  #upwithdown 
When I was little I loved to go on this ride, bumper car 😀
Now I like the bigger ones like roller coaster 👍😎
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När jag var lite tyckte jag om att åka radio bilarna 😀 Nu gillar jag de större attraktionerna som Balder (berg och dalbana) 😀😎
When I was little I loved to go on this ride, bumper car 😀 Now I like the bigger ones like roller coaster 👍😎 • När jag var lite tyckte jag om att åka radio bilarna 😀 Nu gillar jag de större attraktionerna som Balder (berg och dalbana) 😀😎
For all you Mamas waiting for milestones... they will come, and the joy surpasses anything you can imagine.  @staceywatje #morningswithGred #GredelandStella #homiewithanextrachromie #downsyndrome #lifewithds #milestone #t21 #trisomy21 #puddlejumper #morealikethandifferent #theluckyfew
朝起きて、想像以上の積雪に子供達は大興奮‼︎次女と息子は幼稚園がお休みになったので、早々着替えて外で雪遊びー⛄️♪ 2人で雪割りしたり、ケーキ作ったり、おにぎり屋さんしたり、エイシンはお姉ちゃんがやる事を色々真似して楽しそう!微笑ましい光景でした☺️
最後はそのまま散歩ー。でもエイシン途中で雪山に足をとられ、水溜りにダイブ💦顔や体もビショビショで家に帰りましたとさ😅
#記録的大雪#tokyo#寒い#快晴#幼稚園休み#雪遊び#完全装備#公園#アルファード#仲良し#微笑ましい#姉弟#smile#楽しい時間#ママも楽しかった#雪最高#downsyndrome#ダウン症#t21
朝起きて、想像以上の積雪に子供達は大興奮‼︎次女と息子は幼稚園がお休みになったので、早々着替えて外で雪遊びー⛄️♪ 2人で雪割りしたり、ケーキ作ったり、おにぎり屋さんしたり、エイシンはお姉ちゃんがやる事を色々真似して楽しそう!微笑ましい光景でした☺️ 最後はそのまま散歩ー。でもエイシン途中で雪山に足をとられ、水溜りにダイブ💦顔や体もビショビショで家に帰りましたとさ😅 #記録的大雪 #tokyo #寒い #快晴 #幼稚園休み #雪遊び #完全装備 #公園 #アルファード #仲良し #微笑ましい #姉弟 #smile #楽しい時間 #ママも楽しかった #雪最高 #downsyndrome #ダウン症 #t21 
Today I am 4 months old! 
I’m starting to belly laugh and smile more and more every day. Also, I’m starting to sleep in my own bed like a big boy. Mommy, bubba & sissy are my best friends. I love sitting up right even though I can’t fully hold my head up yet, I’m getting close to it though. #theupsideofdownsyndrome #t21 #nothingdownaboutit #babieswithdownsyndrome #AlexanderJames 💙💛
Yeaaay! karena hari ini hari selasa yang artinya..... #fototema is back!
hari ini temanya adalah #fototemakeluarga! 
sambil kenalan sama teman-teman yang lain, yuk? sudah Mima beri nama lho di tiap foto biar saling kenal 😁
mari kita mulai upload foto-foto pertama hari ini 😆
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geser ke kanan buat #fototemakeluarga yang lebih banyak ya Ayah &  Bunda!
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AKU ADA, AKU BISA!
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#DownSyndrome #DownSyndromeIndonesia #downsyndromeworld #Trisomy21 #T21 #potads #happykids #littlewarriors 
#extrachromosome21 #ds #downsyndromeinternational #SPI4 #Sindromadown #sahabatpotadsindonesia4 #downsyndromerocks #happymommy #happydaddy #goingupwithdownsyndrome #everlastinglove #happyfamily #babies #family
Yeaaay! karena hari ini hari selasa yang artinya..... #fototema  is back! hari ini temanya adalah #fototemakeluarga ! sambil kenalan sama teman-teman yang lain, yuk? sudah Mima beri nama lho di tiap foto biar saling kenal 😁 mari kita mulai upload foto-foto pertama hari ini 😆 . geser ke kanan buat #fototemakeluarga  yang lebih banyak ya Ayah & Bunda! . AKU ADA, AKU BISA! . #DownSyndrome  #DownSyndromeIndonesia  #downsyndromeworld  #Trisomy21  #T21  #potads  #happykids  #littlewarriors  #extrachromosome21  #ds  #downsyndromeinternational  #SPI4  #Sindromadown  #sahabatpotadsindonesia4  #downsyndromerocks  #happymommy  #happydaddy  #goingupwithdownsyndrome  #everlastinglove  #happyfamily  #babies  #family 
That's right!!!!
That's right!!!!
21/01 Cultural afternoon after Christ Church. We went to Caixa Cultural to meet our friends Martin and @horabolasdecoracoes for storytelling and than exhibition time. #caixaculturalrj #gentearteirarj #lifeisbeautiful #lifeisbetterwithyou #letthembelittle #heisworthy #vivamaiscultura #goodmorning #movimentodown #theluckyfew #inclusion #art #storyteller #t21 #momofboys #cromossomodoamor #theater #gentearteira #motherhood #maternidade #mundoazul #peterandwolf #acolhedown #momlife
21/01 Cultural afternoon after Christ Church. We went to Caixa Cultural to meet our friends Martin and @horabolasdecoracoes for storytelling and than exhibition time. #caixaculturalrj  #gentearteirarj  #lifeisbeautiful  #lifeisbetterwithyou  #letthembelittle  #heisworthy  #vivamaiscultura  #goodmorning  #movimentodown  #theluckyfew  #inclusion  #art  #storyteller  #t21  #momofboys  #cromossomodoamor  #theater  #gentearteira  #motherhood  #maternidade  #mundoazul  #peterandwolf  #acolhedown  #momlife 
This is a 12 month onesie. He is catching up to his brother so quickly! #jacemichael #tubiebaby #heartwarrior #chdsurvivor #mosaicdownsyndrome #t21
Deliberate and disgusting. Gotta give credit where credit is due!! Some comedians are comics and others are just dicks. And this guy is a DICK! Unless you have lived under a rock for the past decade + then you know that the “R” word is no longer tolerable in modern days. And while I admit to letting friends say it because I KNOW they never meant it out of malice or to intentionally offend people with intellectual or developmental disabilities, I cannot look past this egregious use of the word. Here are the words from this lackluster stand-up hack, Tom Segura...”You can’t say “retarded” anymore. [audience laughs] It was just here. Don’t you remember? -“Retarded.” That’s how I… -[audience laughs] People get very upset. I don’t really support the arguments against it. When people are like, “You shouldn’t say it.” “Why?” “What if there’s one over there?” And you’re like… [audience laughs] We never said it like that. We were never like, “Look at that guy!” [audience laughs] You didn’t say it like that. You said it to describe an idea, or a situation, you know? If your friend was like, “I’ll pick you up at your house, and then we’ll come back to my place, and later we can go back to your house. And we can get your bags. And then, we’ll come back over here after that.” And your like, “That’s retarded. Why the fuck would we do that?” [audience laughs] But now you can’t say that. Now you’ve gotta be like, “That’s not… smart. Your idea has an extra 21st chromosome, if you ask me.” [audience laughs] It’s not the same." This hack of a comedian called people with Down syndrome “retarded”. This was no joke, this was not describing an idea or situation. This was deliberate and disgusting. Call @netflix and tell them you have moral fiber, a conscious, soul and won’t support this atrocity.
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. #downsyndrome #downsyndromeawareness #t21 #upnotdown #theluckyfew #homieswithextrachromies #dsdn #upsyndrome #changingthefaceofbeauty #julianandnoel #love #momlife #mamabear #bullies #noyoudont #youarenotfunny #netflix #bethechange
Deliberate and disgusting. Gotta give credit where credit is due!! Some comedians are comics and others are just dicks. And this guy is a DICK! Unless you have lived under a rock for the past decade + then you know that the “R” word is no longer tolerable in modern days. And while I admit to letting friends say it because I KNOW they never meant it out of malice or to intentionally offend people with intellectual or developmental disabilities, I cannot look past this egregious use of the word. Here are the words from this lackluster stand-up hack, Tom Segura...”You can’t say “retarded” anymore. [audience laughs] It was just here. Don’t you remember? -“Retarded.” That’s how I… -[audience laughs] People get very upset. I don’t really support the arguments against it. When people are like, “You shouldn’t say it.” “Why?” “What if there’s one over there?” And you’re like… [audience laughs] We never said it like that. We were never like, “Look at that guy!” [audience laughs] You didn’t say it like that. You said it to describe an idea, or a situation, you know? If your friend was like, “I’ll pick you up at your house, and then we’ll come back to my place, and later we can go back to your house. And we can get your bags. And then, we’ll come back over here after that.” And your like, “That’s retarded. Why the fuck would we do that?” [audience laughs] But now you can’t say that. Now you’ve gotta be like, “That’s not… smart. Your idea has an extra 21st chromosome, if you ask me.” [audience laughs] It’s not the same." This hack of a comedian called people with Down syndrome “retarded”. This was no joke, this was not describing an idea or situation. This was deliberate and disgusting. Call @netflix and tell them you have moral fiber, a conscious, soul and won’t support this atrocity. . . . . #downsyndrome  #downsyndromeawareness  #t21  #upnotdown  #theluckyfew  #homieswithextrachromies  #dsdn  #upsyndrome  #changingthefaceofbeauty  #julianandnoel  #love  #momlife  #mamabear  #bullies  #noyoudont  #youarenotfunny  #netflix  #bethechange 
집에 오니 짜증이 늘어난 도훈이😔
방해꾼 이준이도 있고😅
움직이고 싶은데 맘대로 움직일 수도 없으니ㅜ
아침엔 침대가드 잡고 잠깐 일어서서 깜놀😲
그래도 장난감도 많고 티비 채널도 많이 나오고 집이 최고지😁
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#첫째#아들#애스타그램#아들스타그램#다운천사#아들맘#형제맘#육아#일상#downsyndrome#t21
Norah:
I feel pretty,
Oh, so pretty,
I feel pretty and witty and bright!
And I pity
Any girl who isn't me tonight.

I feel charming,
Oh, so charming
It's alarming how charming I feel!
And so pretty
That I hardly can believe I'm real.
See the pretty girl in that mirror there:
Who can that attractive girl be?
Such a pretty face,
Such a pretty dress,
Such a pretty smile,
Such a pretty me!  #theluckyfew #ifiwasyouidwannabemetoo #lifeisbetterwithyou #t21 #dsdn #fabukids #instababies #babiesofinstagram #babiesofig #loveislove🌈 #rainbowbaby #bornthisway #limitededition #instagram #momblog #blog #momdiaries #happinessisyou #warriorprincess #downsyndromerocks #worthy #lifeofadventure #photooftheday #babymodel #bossbaby
Norah: I feel pretty, Oh, so pretty, I feel pretty and witty and bright! And I pity Any girl who isn't me tonight. I feel charming, Oh, so charming It's alarming how charming I feel! And so pretty That I hardly can believe I'm real. See the pretty girl in that mirror there: Who can that attractive girl be? Such a pretty face, Such a pretty dress, Such a pretty smile, Such a pretty me! #theluckyfew  #ifiwasyouidwannabemetoo  #lifeisbetterwithyou  #t21  #dsdn  #fabukids  #instababies  #babiesofinstagram  #babiesofig  #loveislove 🌈 #rainbowbaby  #bornthisway  #limitededition  #instagram  #momblog  #blog  #momdiaries  #happinessisyou  #warriorprincess  #downsyndromerocks  #worthy  #lifeofadventure  #photooftheday  #babymodel  #bossbaby 
This is what we are looking to accomplish- almost 27k strong and counting!
This is what we are looking to accomplish- almost 27k strong and counting!
Our good friend @lindseye11 had her station cover our story on Fox 59 in Indianapolis. Although during the FaceTime interview, I was sweating buckets and feeling nauseous, I knew it was important to keep telling the story. To keep advocating for people with disabilities, for Flick. Not everyone may agree with me, and that’s okay. Hate speech is not free speech, even when it’s dressed up in “comedy”. No one should make you feel guilty for advocating for your child. “That’s comedy” isn’t a response. Calling my daughter retarded, isn’t funny. In any sense. Harassing us because we truly advocate for our kids isn’t okay. So although I’m sure to get a lot more ridicule, as my husband said “remember who you’re doing it for”. I do it for you Felicity and those like you. (I just won’t read comments on the story) ❤️ If you didn’t sign the petition yet, the link is in the bio!
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#downsyndrome #downsyndromelove #downsyndromerocks #downsyndromeawareness #t21 #trisomy21 #upsyndrome #morealikethandifferent #nothingdownaboutit #theluckyfew #mystory #babiesofinstagram #instababy #instakids #instatoddler #toddler #toddlerlife #toddlerlifestyle #toddlerfashion #photooftheday #instaphoto #blueeyes #takeitdown #advocate #bestrongnotsilent
Our good friend @lindseye11 had her station cover our story on Fox 59 in Indianapolis. Although during the FaceTime interview, I was sweating buckets and feeling nauseous, I knew it was important to keep telling the story. To keep advocating for people with disabilities, for Flick. Not everyone may agree with me, and that’s okay. Hate speech is not free speech, even when it’s dressed up in “comedy”. No one should make you feel guilty for advocating for your child. “That’s comedy” isn’t a response. Calling my daughter retarded, isn’t funny. In any sense. Harassing us because we truly advocate for our kids isn’t okay. So although I’m sure to get a lot more ridicule, as my husband said “remember who you’re doing it for”. I do it for you Felicity and those like you. (I just won’t read comments on the story) ❤️ If you didn’t sign the petition yet, the link is in the bio! . . . #downsyndrome  #downsyndromelove  #downsyndromerocks  #downsyndromeawareness  #t21  #trisomy21  #upsyndrome  #morealikethandifferent  #nothingdownaboutit  #theluckyfew  #mystory  #babiesofinstagram  #instababy  #instakids  #instatoddler  #toddler  #toddlerlife  #toddlerlifestyle  #toddlerfashion  #photooftheday  #instaphoto  #blueeyes  #takeitdown  #advocate  #bestrongnotsilent 
A pedido de mis amigos, les muestro mis avances en natación con @upswim 😄
#swimup #sindromededown #downup #t21 #downsyndrome #nothingdownaboutit #soyup #fuerzaup #cadadiamejor #vamosquesepuede #todolopuedo #todoesposible #natacion #amolapiscina
Joey during her science exams😬. As we get closer to grade school (a year and a half away), figuring out her academic path is what keeps me up at night. #specialneedseducation #inclusion #alittlebitextra #t21 #trisomy21 #theluckyfew #downsyndrome #joeyyuzon
Sooooooo....little hiccup in my original plan due to the psych eval. Homestudy agency confirmed I do need it before my homestudy so this is the plan. I get paid the end of each month. 
End of January = Training and Police Clearance
End of February = Coordinating Agency Registration
Early April (Hoping the first week of April because I'm off work) = Psych Eval
End of April = First Homestudy Fee and Medical Clearance
End of May = Flight to Ontario (might be switched with April depending on ticket prices)
End of June = Second Homestudy Fee
End of July and After = Saving like mad to come up with dossier fee as soon as possible!
💙💛 #adoption #downsyndrome #downsyndromeadoption #internationaladoption #adoptionislove #adoptionrocks #Indiaadoption #adoptingfromindia #India #waitingtoadopt #t21 #theluckyfew #itwillbeworthit #hope #singlemotherbychoice #worththewait #onestepatatime #onedaycloser #everydayisonedaycloser #reecesrainbow #adoptionprocess #adoptionpaperwork #adoptionfundraiser #fundraiser #ittakesavillage #lawofattraction #savingforadoption #gofundme #lovemakesafamily #lovecrossesoceans
Sooooooo....little hiccup in my original plan due to the psych eval. Homestudy agency confirmed I do need it before my homestudy so this is the plan. I get paid the end of each month. End of January = Training and Police Clearance End of February = Coordinating Agency Registration Early April (Hoping the first week of April because I'm off work) = Psych Eval End of April = First Homestudy Fee and Medical Clearance End of May = Flight to Ontario (might be switched with April depending on ticket prices) End of June = Second Homestudy Fee End of July and After = Saving like mad to come up with dossier fee as soon as possible! 💙💛 #adoption  #downsyndrome  #downsyndromeadoption  #internationaladoption  #adoptionislove  #adoptionrocks  #Indiaadoption  #adoptingfromindia  #India  #waitingtoadopt  #t21  #theluckyfew  #itwillbeworthit  #hope  #singlemotherbychoice  #worththewait  #onestepatatime  #onedaycloser  #everydayisonedaycloser  #reecesrainbow  #adoptionprocess  #adoptionpaperwork  #adoptionfundraiser  #fundraiser  #ittakesavillage  #lawofattraction  #savingforadoption  #gofundme  #lovemakesafamily  #lovecrossesoceans