Our story: siblings, Down syndrome, & unexpected beauty

By Mark Leach

JJ231Editor’s note. My family will be on vacation through the end of next week. I will be posting an occasional new story, but for the most part we will be re-posting columns that ran over the last year. Many will be strictly educational while some will about remind us of notable victories this legislative cycle.

A good friend found this photo of my kids earlier this week and posted it to Facebook. I found myself transfixed by it. I wonder if you see what I see?

I expect complete strangers who see this photo will likely just see two cute kids about to give each other a smooch. That alone is a really sweet photo. I hope they enjoy it just for that.

But, for those who find it on this blog, or know me, then, they know that the girl in the picture, in addition to having cute ringlets and pursed lips to kiss her brother, also has Down syndrome. (I also think those that have only known me since my mid-twenties will be equally surprised to see what beautiful hair they both have). Upon learning that the girl has Down syndrome, many people will think of that first: “oh, look at that sweet photo of that girl with Down syndrome about to kiss her brother.” That’s the world we live in.

But for many, who know Juliet or know I have a daughter with Down syndrome, they will see a lot more in this photo.

Those of us who have cared for a toddler with Down syndrome can look at this photo and appreciate so many other things:

Look at how well she’s holding her head up, the result of weekly physical therapy sessions through early intervention services mandated by federal law.

She’s holding a crayon and drawing, again, the result of bi-monthly occupational therapy early intervention sessions.

There’s books on the floor around them, books that she enjoys looking through and sounding the words out thanks to developmental intervention and speech therapy.

But what I hope everyone sees is the pure love between Juliet and her little brother James in this photo. And, appreciate how no one can expect that beauty when the diagnosis is first delivered. Or, at least I couldn’t.

I don’t mean I couldn’t fathom my little girl loving her little brother. I mean factually, when we received the diagnosis there was no James and no foregone plan to have another child. Instead, we were advised of the likelihood of having another child with Down syndrome should we become pregnant again.

So, we could not have expected, just 3 years after she was born, she’d have a two-year old little brother (when this photo was taken).

That they’d love each other and love playing with each other.

That they’d spend a cold winter day in the front room coloring together.

That spontaneously they’d give each other a kiss because they love each other.

You just cannot expect all of this when you get the diagnosis that your child has Down syndrome.

But it can happen. And when it does, you will have lived with your child, loved your child, cared for your child for thousands of days and tens of thousands of hours.

It happened for us.

The proof is in that beautiful picture.

Editor’s note. This appeared at downsyndromeprenataltesting.com