Why You Shouldn’t Say ‘Sorry’ About My Grandchild With Down Syndrome


A few weeks ago, I met someone who said, “I’m sorry,” when he heard I provide workday care for my granddaughter who has Down syndrome. “I’m sorry” is never the correct thing to say to someone who dearly loves a human being who happens to have an extra chromosome. It diminishes that complex organism known as a child to a single chromosome and dismisses all the rest. There are other things like:

•  Seeing the huge smile and sparkly eyes on my granddaughter’s face whenever she spots someone she loves.

• When her rosebud mouth forms an O and her eyebrows arch high as soon as she hears Bruno Mars sing “Uptown Funk.” 

• The stink eye she gives you if you are trying to feed her quinoa with blueberries.

•  The way she holds your hand — still — as she sleeps.

I could go on, but I think I’ve made my point with these handful of examples.

I have three things — really great things — I wish people knew about Down syndrome so they would never even think of saying “I’m sorry” to a family member caring for a child with Down syndrome.

1. Your child will get a lot of good attention.

A diagnosis of Down syndrome gives medical personnel and family members a heads up about possible complications and challenges this new human may face in life.

All new babies have complications and challenges awaiting them, but most often, those who love them don’t know what they will be. So we wait. And sometimes we miss things. “We” meaning medical professionals and parents alike.

So people — lots of people — look at the baby who has Down syndrome with an extremely careful eye, which leads to procedures and therapies being put into place at the very first possible moment, which serves to assist the baby in becoming the very best “me” that he or she can possibly become. And isn’t that what we all want for all of our children?

2. You get to squeeze more “babyness” out of your baby.

If you look at any of the charts for physical, social, emotional, language and cognitive development which compare the “norms” for those with Down syndrome and those without, you will notice a gap in the ages of first attainment for all of the skills listed. But you will also notice a vast amount of overlap. And you will notice all of the things a “without” child learns to do, a “with” child will learn, too. It just may take a little longer. Which means that you get to squeeze more “babyness” out of your baby. And if you love hanging around babies, this can only be a blessing to you.

3. Humans with an extra chromosome have so much to teach us.

If you are in the presence of Faith for even half a day, you’ll notice her extraordinary patience. If you need to put her down for a moment to attend to a sister, even if you’re getting ready to feed her her bottle, she’s just fine with that. No tears. Very few things are important enough to get her disgruntled. In fact, you’ll also notice her relentless cheeriness. She smiles at you just about any time you make eye contact.

Faith also has incredible determination. If she is determined not to eat whatever lumpy food you are trying to introduce or not to use that left hand the therapists would very much like her to use upon occasion, you’ll find yourself with a formidable opponent.

If you spend enough time with this child and attempt to follow her example in making your way through your own life, you’ll know what a blessing she is. Patience. Cheer. Grit.

Perhaps we should simply accept all babies for the blessings of joy they bring to their families and set sorrow to the side.

A version of this post originally appeared on A Gram of Faith.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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