The Special Privilege of being the parent of a child with Down Syndrome

By Eileen Haupt

Eileen and Sadie

Eileen and Sadie
Photo courtesy Vermont Catholic Magazine

October is Down Syndrome Awareness Month. It is a time when scores of advocacy organizations and individuals across the country do their utmost to raise awareness about this genetic condition.

I was thinking about Awareness and how unaware I was about Down syndrome prior to the birth of Sadie, my second daughter, almost 15 years ago. It got me thinking, what are some of the things I would like others to be aware of?

In particular, because such a high percentage of babies diagnosed with Down syndrome are aborted—estimates run as high as 90%– I thought I’d use this post to talk to the mothers carrying babies with Down syndrome. There is so much information available now, but unfortunately a lot of it is misinformation.

So, to the mother who has recently been told by her doctor that her unborn baby has Down syndrome, here’s what I would like her to know:

You will love your baby. Really. You have received many subtle and not so subtle negative messages about individuals with this condition. These messages are distorted; they are not the truth. The truth is that you will fall in love with your baby, just as you would any of your children.

It is very normal to feel fear and sadness when you receive the news. You might be tempted to abort your baby because of this fear and sadness. But if you do abort her, your fear may go away, but the sadness will remain. Always. However, if you bring your baby to birth, you will discover that year fear was more daunting than reality, and your special baby will transform your sadness into joy! Be not afraid!

Maybe you worry that you could never “handle” a child with special needs, that you are not that type of woman. Though, of course, all children are different and have their own gifts and challenges, I can say from my experience that caring for my daughter is a piece of cake. That is not to say there are not challenges, but there are with any child. You grow with your child; neither you nor anyone else automatically becomes “that type of woman.” But you can do it!

Perhaps you feel overwhelmed with information about Down syndrome. Though the chances of having certain health issues are greater with Down syndrome, it doesn’t mean your child will have them. Many of these issues, including heart defects, are treatable. My daughter had a heart defect and had open heart surgery to correct it at the tender age of 3 months! She came through it with flying colors, and has been very healthy ever since. She has none of the other issues that we are warned about.

You might wonder how does one care for a baby with Down syndrome. Aside from ensuring that your baby is healthy, in every way your baby is a baby first, and needs everything else that babies need: Love, sleep, feeding, holding, diaper changes, tender words, playing, bathing, hugs, and kisses. She or he will eventually smile and have giggles, sit up, stand, walk, run, play, learn to read, do Math, and learn many other things. She or he is also likely to have a great sense of humor!

There is so much more to say, but I hope these points have been helpful and made you more Aware. If you remember nothing else from these few thoughts, please remember that there are no human words to convey the joy your child with Down syndrome will bring to you. Don’t let anyone talk you out of this very special privilege!

 Send your comments to daveandrusko@gmail.com.