To the Mom Who Just Got a Down Syndrome Diagnosis, From Another Mom With Love


Dear mom who just got a Down syndrome diagnosis,

First, welcome to the biggest “family” I’ve ever been part of. We’re here, all of us, to help. Some are further along the journey than others, but all of us can offer you help on your journey. The Down syndrome community is expansive in their views and approaches.

You likely heard your babe has an extra chromosome from a pediatrician, genetic counselor or your obstetrician. I hope they were gentle. I hope they were positive. I hope they gave you up-to-date information. And I hope they listened to you. Maybe they gave you local contacts in the Down syndrome community, or maybe they only gave you medical information. I want you to know that both are valuable. It’s OK if you aren’t ready to meet other families yet. It’s OK if you immerse yourself in events like the Buddy Walk. This is your journey, and it’s unique to you.

As you sit there looking at a profile in an ultrasound or holding your bundle of joy, please know you hold the keys to everything they will need. Your love will shine through with each medical decision, each push for therapies and each gentle cuddle you give.

It’s OK to be lost sometimes. It’s OK not to have all the answers. Sometimes you will be so overwhelmed, you can’t think about therapy, or surgery, or being brave. And that’s OK. Your baby doesn’t need for you to have all the answers. Or even to keep a brave face all the time. All your baby needs from you is love.

Whether you advocate loudly from the rooftops or quietly behind your keyboard, you will make a difference.

As you hold your baby or rub your growing baby bump, please know you are enough.

Love,
A mom further along this path

Girl with a pink cardigan smiling with her arms raised

Follow this journey on Happily Everly After.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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