I Wish I’d Known This About My Son With Down Syndrome From Day One


If I knew I was going to pump for a whole year, I would have bought a hands-free pumping bra.

If I knew my son, Ben, was not going to need heart surgery before he turned one, I would have worried less.

If I knew I would only hear congratulations and love for my sweet boy from friends and strangers, I would have spent less time thinking about how to defend him.

If I knew how quickly that first year would go, I would have shut the computer more and spent more time with all three of my kids.

If I’d known the dozen local families, online community and resources available to me, I would not have felt so lonely.

I think back on the last year, and I think about all the things I did wrong. I let Corrie and Evan watch way too much TV. I spent a lot of time online. I neglected my home. I didn’t stimulate Ben enough. I didn’t put his hip helpers on as much as I should have. I wasn’t patient with my family.

And I try to give myself a break. Honestly, it was a shock when Ben was born with Down syndrome, even though the risk (according to the quad screen) was 1 in 19. I didn’t do any research beforehand; I just figured we would cross that bridge when we came to it.

So then, when we did cross that bridge, I felt a lot of fear and worry. I held Ben in my arms and felt protective. I felt like this little baby needed me to shield him from all that life was going to bring.

Little did I know, Ben would be amazing. His smile would light up a room. His brother and sister would adore him. Our family, church and friends near and far would delight in him.

Ben_in_pool

Little did I know that he would be my easiest baby. He would sleep through the night at one month old. He would drive with me from home to preschool to soccer practice to a doctor appointments with (mostly) a good attitude. He would be a champion snuggler.

If I had known that Ben would be… well, Ben… I would have done a happy dance around the hospital room.

IMG_9514

This post originally appeared on What a Team!

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Find this story helpful? Share it with someone you care about.