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five things i wish i had known when my daughter was born with down syndrome
Today marks the eighth anniversary of World Down Syndrome Day, a global awareness event. World Down Syndrome Day is specifically celebrated on March 21st, because it reflects the fact that Down syndrome, also known as Trisomy 21, results when a child is born with three copies of the 21st chromosome, instead of the typical two copies.
In honor of this day, we wanted to share with you a special guest post by fellow mommy blogger, Amy Julia Becker, who is the proud mother to a beautiful little girl who has Down syndrome.
In a simple, yet profound way, Amy Julia lists out just five things she wishes she had known when she learned that her daughter was born with this affliction. Five things she knows now that wishes could have told her “younger self” that would have helped a little, provided some comfort during such a scary time. Five things that would have assured her that it would in fact be more than ok.
Read on…I know you’ll find Amy Julia’s post just as powerful as I did.
Seven years ago, on December 30th, 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:
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.
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.
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.
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 ride a bike, 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.
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.
This post was written in honor of World Down Syndrome Day. Amy Julia Becker is the author of What Every Woman Needs to Know About Prenatal Testing: Insight from a Mom Who Has Been There (Patheos, 2013) and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany, 2011). She blogs for Patheos at Thin Places. She lives in western Connecticut with her husband and three children.