upsyndrome

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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.

    #upsyndrome #nothingdownaboutit

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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.

    #upsyndrome #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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