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.
Continue reading Five Things I Wish I Had Known When My Daughter Was Born with Down Syndrome at Chai Mommas in a guest post I wrote for World Down Syndrome Day.