By Eileen Haupt
Editor’s note. Down Syndrome Awareness Month ended yesterday, but this essay, which ran in 2019, is so excellent that I hope you won’t mind me running it a day late. Down Syndrome Awareness Month is a time, according to The Jerome Lejeune Foundation, when “we applaud caregivers, families, and medical professionals — but most of all, we applaud all the wonderful people with Down syndrome.”
To the pregnant mother who has just learned through prenatal testing that her unborn baby has Down syndrome, I would like to let you in on a wonderful secret. If you could fully experience the awe revealed by this secret, you wouldn’t let anything get in the way of bringing your special baby to birth and into your life.
But I cannot reveal this secret to you. I wish I could, but I cannot, because it cannot be known by words, but only by experience. It is a secret of the heart.
There are no human words to convey to you what you will come to know about this secret of this heart.
Our societal acceptance of abortion has pushed you onto a precipice over what seems like a chasm, where you are forced to make a choice.
Do you give into your fears and preconceived notions, back down, stay on the side you are on, and choose abortion? Or do you make that leap to other side, to the unknown, to be the mother of a child with Down syndrome?
If you give into the voices saying abort, know that you will never be the same again. There will always be sadness about your baby who was but is no longer.
But on the other side is a place where there will be love, joy, awe, and wonder, and you will come to know this wonderful secret.
It is true, you might grieve at first, over the fact that your child will not be what you had expected. But I promise you that sooner than you think , you will never regret having had your baby.
You will come to wonder why you were ever sad.
I want so much for my inadequate words as the mother of a daughter with Down syndrome to be a bridge to the other side– to give you hope, to encourage you to trust that you will come to know this secret of the heart.
But how do I convince you of the depth of love you will feel toward your child with Down syndrome? How do I assure you that your child will be beautiful, and that you will come to see the beauty in all individuals with Down syndrome? How can I tell you of the pride you will feel when your child reaches milestones?
How can I find a way to tell you about the unique softness of features and character, which the late Dr. Jerome Lejeune (who discovered the cause of Down syndrome) eloquently described as a “tender languor?” How can I tell you how the hugs of this “tender languor” will melt your heart?
How can I share with you the wonderful sense of humor your child will have? How can I get you to hear the infectious laugh that you will consider magic?
How can I communicate to you how grateful you will be for being allowed this unique experience of being the mom of a child with Down syndrome? How can I convince you that you will come to know your child as a precious gift?
I can’t tell you these things, because they are part of the secret that you will experience for yourself–if you do not give into fear.
Lest I be accused of looking through rose-colored glasses, I will tell you that there will be some challenges. There are certain health issues that are more common among those with Down syndrome, but that doesn’t necessarily mean your child will experience them, and certainly not all of them. Besides, thanks to modern medicine, most of these health issues can be can be treated.
Whatever challenges you face, they will pale in comparison to the joy your child will bring you.
Your child will experience a different level of learning, but you will come to realize that your child will learn! And you will come to know that an “intellectual disability” doesn’t mean what you think it means.
Most of all know that you are not alone! Most communities have regional Down syndrome groups for family support and friendship. (And if yours doesn’t, you can start one!)
You will meet other parents who have walked the same path who will welcome you and who will be eager to listen and to share their experience. All states have services to assist you at each stage of your child’s life. You will have the opportunity to meet a whole world full of mothers just like you, thanks to the Internet.
In this Down Syndrome Awareness Month, my hope is that this message will reach you, the mother who has just learned that her baby has Down syndrome, and that you will choose not to give in to fear of the unknown. Please don’t listen to those voices feeding your fears. They don’t know the secret of the heart.
But you can learn this wonderful secret.
And I hope and pray that you do.
Editor’s note. Eileen Haupt is co-founder of Keep Infants with Down Syndrome (KIDS).