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When we find out a family is expecting a baby with Down syndrome, we don’t say, “I’m sorry.” We say, “Congratulations!”
#DownSyndrome #DownSyndromeAwarenessMonth #nothingdownaboutit
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My baby Kinda ♥️
Please follow my girl’s Instagram blog.. instagram.com/kinda.kilany
we document her journey with #DownSyndrome through pictures and videos ♥️
#trisomy21
#downsyndromeawareness
#nothingdownaboutit
#NotBroken
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Dear Doc #nothingdownaboutit #upsyndrome
To the doctor who delivered our initial diagnosis-
This may be the first letter of this kind you’ve ever received. Maybe you don’t even remember giving us our initial diagnosis, but I’m here to tell you that you botched it.
After we sat in that cold, sterile room for what felt like hours, the chill didn’t go away when you entered. Your lack of empathy and warmth was felt immediately. Your explanation of what was going on was so brief and inconsiderate that my husband had to ask you if our child would even survive. And then you walked away. You passed us off to your NP and never looked back. Now I need you to look back. I need you to see Maddox. He is beautiful, and he is perfect exactly the way he is.
There are so many things I wish you had said. I wish you had told us that we would fall in love as soon as we set eyes on him. I wish you would have told us that he would be the best sleeper. I wish you would have told us that we would spend hours staring at his perfect face while he snuggled in extra close. I wish you would have told us that his smiles would light up a room, and his mere presence would have the power to heal hearts. I wish you would have told us that his birth would bring families closer and make friendships more meaningful. I wish you had said anything but what you said that day.
You see, the measurement of his femur and humerus bones can never measure the love we have for him. They cannot measure his ability. They cannot measure his capacity for love, the friendships he will have, or the life he will lead. They cannot measure his future--his ability to go to college, his ability to have a career he loves, his ability to meet someone to spend the rest of his life with, or his ability to change the world.
He is already changing the hearts of everyone he meets, and maybe someday you’ll be lucky enough to meet him, too. But I hope that your heart changes before then.
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Dear Doc #nothingdownaboutit #upsyndrome
To the doctor who delivered our initial diagnosis-
This may be the first letter of this kind you’ve ever received. Maybe you don’t even remember giving us our initial diagnosis, but I’m here to tell you that you botched it.
After we sat in that cold, sterile room for what felt like hours, the chill didn’t go away when you entered. Your lack of empathy and warmth was felt immediately. Your explanation of what was going on was so brief and inconsiderate that my husband had to ask you if our child would even survive. And then you walked away. You passed us off to your NP and never looked back. Now I need you to look back. I need you to see Maddox. He is beautiful, and he is perfect exactly the way he is.
There are so many things I wish you had said. I wish you had told us that we would fall in love as soon as we set eyes on him. I wish you would have told us that he would be the best sleeper. I wish you would have told us that we would spend hours staring at his perfect face while he snuggled in extra close. I wish you would have told us that his smiles would light up a room, and his mere presence would have the power to heal hearts. I wish you would have told us that his birth would bring families closer and make friendships more meaningful. I wish you had said anything but what you said that day.
You see, the measurement of his femur and humerus bones can never measure the love we have for him. They cannot measure his ability. They cannot measure his capacity for love, the friendships he will have, or the life he will lead. They cannot measure his future--his ability to go to college, his ability to have a career he loves, his ability to meet someone to spend the rest of his life with, or his ability to change the world.
He is already changing the hearts of everyone he meets, and maybe someday you’ll be lucky enough to meet him, too. But I hope that your heart changes before then.
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Got cake?
Someone’s been caught red-handed with cake!
But you only turn 1 once—dig in with both hands, Francesco!
#DownSyndrome #nothingdownaboutit
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See the Momma Behind the Child
For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child. The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child. Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting that life with Down syndrome can be hard. Very hard. The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them. This Down Syndrome Awareness Month, take a moment to see the momma behind the child. Original words written by Baskets of Love Down Syndrome Support Society. @basketsofloveds
#takingthescenicroute #MoreAlikeThanDifferent #DownSyndrome #downsyndromeawareness #downsyndromelove #downsyndromerocks #TheLuckyFew #downsyndromeisbeautiful #chromosomallyenhanced #homiewithanextrachromie #seetheability #alittleextra #designergenes #upsyndrome #nothingdownaboutit #t21 #trisomy21 #shouttheirworth #differentisthenewnormal #luckiestmomsever #lifeisbetterwithyou #WouldntChangeAThing #basketsofloveds #DownSyndrome #downsyndromelove #WouldntChangeAThing #lifeisbetterwithyou #TheLuckyFew #T21Club #takingthescenicroute #nothingdownaboutit #nonprofit #spreadinglove
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Who is your sunshine? 🌞
Stella’s brother always brightens her day!
In fact, my brother Justin brightens my day, too!
Who lights you up when you could use some sunshine?
#DownSyndrome #Siblings #Happiness #uplifting #nothingdownaboutit
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This week, our founder of Brittany‘s Baskets of Hope, Brittany Schiavone, turned 30! She reminds us what it means to live to your fullest, no matter who you are or how you were born. She’s a leader, a student, a self-advocate, and she’s following her passions and purpose, surrounded by loving friends and family. So when she says, “I believe babies with Down syndrome can do anything—really, really anything,“ we wanted to remind you all that it’s true. With a little help from our friends, we can define limits. If you’re a parent of a new baby with Down syndrome, remember: the future is bright! And you’re surrounded by a community that’s rooting you on! #DownSyndrome #TheLuckyFew #nothingdownaboutit
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World Down Syndrome Day 2019
Every night I lay down having a grateful heart. I am humbled daily by various demonstrations of love and faithfully count my blessings.
My heart is especially full tonight because of all who showed love and support to Savannah by “Rockin’ their socks” today for #WDSD ! (See my stories on instagram.com\Ladypositive 🙌🏼)
Spreading awareness helps to educate so many, like me, that just three years ago didn’t know much about #DownSyndrome . I definitely wasn’t aware there was a day to honor it globally!
The negative stereotypes associated with DS makes me angry! Those lies are what instilled fear in me after our prenatal diagnosis!
I want to let you know that there is nothing scary about Down Syndrome! It isn’t a negative thing! It doesn’t make anyone less worthy! Individuals with DS still thrive and become anything they want to become! They have purpose and I will spend the rest of my life shouting their worth!
These beautiful lives enhance others they encounter, including this momma!
I wrote a blog post shortly after Savannah was born that transparently shared how while I was still pregnant, I desperately prayed God would heal Savannah. I also used these crazy apps to try to determine what Savannah would look like after putting photos of JR and I in it. At times, my mind was overwhelmed with fears of the unknown and the negative scenarios my specialist told me only added fuel to the fire consuming me.
Here is the answer to all the questions that exhausted my mind.....
God makes no mistakes. Savannah was the one used to purge me of discriminations I didn’t even realize I had. Savannah, Alexis, and Ava have made me see life in a more beautiful, fulfilling way. Life isn’t about what we tangibly obtain... it’s about who we become! So while I prayed for healing, I received it. I was the one who needed it, not Savannah.
God is so good and has blessed our family with a miracle.... that miracle’s name is Savannah Lanier White! .
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#SavannahLanier #RockYourSocks #DearMom #SheChangedMeForTheBetter #Love #Kindness #BeTheChange #PositiveVibes #downsyndromeawareness #advocate #AdvocateLikeAMother #nothingdownaboutit #IWillShoutYourWorth #TheLuckyFew #Momlife #Momblogger
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