5 Things I Wish I Had Known when Our Daughter Was Diagnosed with Down Syndrome

penny babyOn December 30th, 2005, our firstborn daughter came into the world. It was an easy delivery—a little early, but not premature, no signs of distress or trouble, just a shock of black hair and a puffy face, and eyes the color of the sea on a cloudy day. But two hours after Penny was born, we learned that she had Down syndrome, the presence of a third copy of chromosome 21 in every cell of her body. We thought we had been given terrible news.

Now, I look back on that young mother, and I want to be able to hold her hand and look into her frightened, angry, sorrowful eyes and tell her not just that it will all be okay. I want to tell her why it will be more than okay. I want to tell her how her daughter will change her life in ways she never could have expected. I want to take her worry and grief and confusion. If I could, here is what I would say:

1. You think Down syndrome means tragedy.

And people will compare your experience to that of losing a child in a car accident or to cancer or some other horrible fate. And though you will experience a sense of loss, you will realize eventually that you have lost a hypothetical child, and that the child right in front of you, this child, with her sparkling eyes and crooked teeth and warm soft hand, this child is a blessing. In time, because of the privilege of knowing and loving her, you will realize that your grief has turned to gratitude and that your worry has turned to wonder.

2. You think Down syndrome means isolation.

But you will discover that it brings a world of connections. It’s not only that you will now feel a bond with other parents of children with Down syndrome throughout the country and around the globe. It’s that having a child who looks and acts somewhat different from what you expected, a child who you see as beautiful and funny and kind and smart and brave, will help you to recognize that same beauty in everyone else. You will think your world has become smaller, when it has only begun to grow.

3. You think that Down syndrome means hardship for you and your daughter.

As with any child, you’re right. There will be sleepless nights. There will be doctor’s visits. There will be a time when you find her sitting up in bed with eyes sunken into her head from dehydration after a stomach flu, and you will rush her to the hospital and she will stay for two days. There will be meetings with her teachers who talk about behavior plans. You will worry about her health, her ability to make friends, her future. And yet you will also realize that every life arrives with hardship. And every life arrives with the potential for inexpressible joy.

4. You think Down syndrome means special treatment.

And other people will, with very good intentions, treat her as if she can’t learn and can’t sit still and can’t communicate. But you will believe in her abilities, and you will discover that she can sit in time out just like her little brother. That she can communicate through sign language before she is able to talk with words. That she will work harder than any kid you’ve ever known as long as she is motivated, and that even though it takes longer for her, she will learn—to read, to swim, to tie her shoes, to use gentle hands with her baby sister. You will learn not to treat her as special, but as her own person, with particular struggles and particular gifts.

5. You think Down syndrome means giving more than you have to give.

And some days it will feel that way, as it will with each of your children. But then she will come over to you, with your head in your hands after a fight with your son, and she will say, “Mom, should we pray?” She will come home from school and embrace you and say, “I had a happy day Mom!” She will give back far more than she has ever taken.

She will break your heart. Wide open. And you will be forever forever grateful.

I wrote this post a few years ago for a website that no longer exists. I didn’t want it to be lost, so I am reposting it here today. If you know Penny through my writing, you’ll know that she’s 13 now, and some of these examples are from when she was a lot younger. But I stand by every word of this post, and I hope it will be an encouragement to other parents. 

I also wrote a book about the experience called A Good and Perfect Gift.

For the month of October 2019 anyone who joins my mailing list will receive a free pdf of my ebook Missing Out on Beautiful: 7 Essays About Down Syndrome. Sign up in the sidebar to get your copy today!

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This Post Has 10 Comments

  1. Emily Miller

    I’m so glad that I took the time to read this! I agree with every word that you said. This is wonderful. Thank you for writing this and for being a beacon of hope for all of us, especially expectant mothers of children with Down Syndrome. ♥️

    1. Amy Julia Becker

      Thanks so much, Emily! Have you seen Penny’s letter to a new mom? The short version is that she loves her life and says don’t be afraid! I agree with her wholeheartedly.

  2. Carol

    I have a new grandson with Downs Syndrome. He is precious and I am trying to learn all about Down Syndrome to enjoy him even more.

    1. Amy Julia Becker

      Congratulations on the birth of your grandson! I’ve done a lot of writing about our experience with Penny, who is now almost 14 and has a wonderful life. There are also great support groups online but most of all I would say enjoy that baby as much as you can! Thanks for commenting.

  3. Marjorie

    Our youngest grandchild, Owen, has Downs Syndrome and he is nine months old today. I have the privilege of being his caregiver 2 days a week and those two days are the highlight of my week because he is the light of our world. We couldn’t love him any more. We feel so very blessed that God has entrusted our family with this wonderful and unique gift from heaven.

    1. Amy Julia Becker

      Thanks so much for sharing. I am confident that his light will continue to shine bright!

    2. Cindy

      When they smile, it’s incredible!

  4. Cindy

    My daughter, Cece, is 17 years old. It’s been a long everlasting experience. Every day is special, and I can’t wait to see her amaze me again! Cece loves to dance, tap, ballet and jazz. She has been dancing for 14 years, she started by watching Shirley Temple movies. Each child has special interests and needs. Finding their gifts can be a challenge, but once they do, help them run with it. I love all the gifts Cece has given us. Her beauty shines through with brilliance! Can I send a picture?

    1. Amy Julia Becker

      I would love to see a picture! amyjuliabeckerwriter [at] gmail [dot] com (And I loved Shirley Temple movies when I was a kid too!)

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