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If You're a Mama to a Child With Down Syndrome, Read This

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This is a letter I wrote to myself, four years after my daughter’s prenatal Down syndrome diagnosis:

Dear Mama,

I will tell you that the day you learn that the child you’ve dreamt about, prayed for, longed for is diagnosed with Down syndrome your life will change. You’ll never forget the words said to you. Through tears you’ll search for comfort and reassurance in the eyes of the doctor sitting in front of you. You’ll hang onto every word. You’ll listen to this doctor describe the life they believe your child will have, “There will be many challenges. She may never walk or talk. She will likely never drive, go to college or get married. She will never live independently. She will likely have an IQ of 70.” You’ll leave that appointment feeling like you’ve been punched in the gut.

The world around you will suddenly feel so unfair. You’ll pass parents and children on your way out of that appointment and you’ll ask, why? Why us? Why my child? You’ll make the drive home with your husband, neither one of you able to say a word. Outside, the world will carry on. A school bus will stop in front of your house and you’ll crumble at the thought, “Will my child ever have friends?” You’ll google like you’ve never googled before. You’ll wonder what your life will look like, what your child will look like. Will she look like us? You’ll have so many questions. You’ll doubt your strength. You’ll doubt your faith. You’ll doubt that you’ll ever be enough for this child. You’ll have difficulty sleeping, but also getting out of bed. You’ll crave answers to all of your questions, but you’ll be too scared of the answers to ask them. You’ll find yourself fighting for your child’s life before they are even born. The options given to you by your doctor after your diagnosis will break your heart all over again. You’ll repeatedly defend your choice of continuing the pregnancy to many- friends, family and the doctor that will tell you, “You don’t have to be a hero.” You’ll tell this doctor many times over that you’ve never questioned your love or desire for this child, regardless of chromosome count. And when this child is born, you’ll turn into someone you don’t recognize.

The term “mama bear” will suit you. You’ll advocate and push for answers. You’ll correct medical professionals with their outdated ideas or stereotypes of the life your child will live. You’ll fight insurance companies to get your child the therapies your child needs. You’ll research and research and research some more. You’ll find yourself an expert on all things Down syndrome. You’ll educate and challenge doctors on rounds. You’ll educate family and friends. You’ll share your life on social media. You’ll turn your grief and heartache during those early months post diagnosis, and turn it into being a resource for other mamas finding themselves on this path. You’ll find so much comfort in other mamas walking this journey with you. They will be your lifeline. You’ll find yourself an expert on feeding, sign language and finding your way around your local children’s hospital. You’ll learn about IEPs and you’ll become THAT mom in an IEP meeting. You’ll hate developmental milestones and play dates with typical peers. Your heart will sink when you see an email in your inbox from the preschool. Things will sometimes feel so, so hard.

This is so much mama. How will you ever do it? Oh, but you will. You will cry and scream and laugh. You’ll experience ranges of emotion you never knew possible. Your heart will go on to heal. You are stronger than you know. You are doing it. This little person you’ve been fighting and advocating so much for has changed you. Suddenly life has a different perspective. You no longer sweat the small stuff, and instead get a glimpse of the world through your daughter’s rose-colored glasses. The view is breathtaking. You see the beauty in the road less traveled. You’ll learn to give yourself grace. You will cherish every minute of this life and gift you’ve been given despite some of the heartache. Those milestones you hated? You will be brought to tears each time your child overcomes so much to meet them. They will be that much sweeter. You will find a renewed faith in those you find along your path: your child’s occupational therapist that listens to your new mom worries, a child that befriends your non-verbal child and wants to have playdates, a veteran mom that has walked this path many years before you. You’ll come to find so many gifts in the journey. But among all of this mama, you’ll learn that Down syndrome isn’t something to grieve. Down syndrome, you’ll learn, is nothing more than one big beautiful love story. Oh, mama how much you are loved.

A mother smiling at her daughter with Down syndrome.


Photo submitted by contributor.

Originally published: January 10, 2020
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