The Apology I Owe My Son 3 Years After His Diagnosis

I walked into a shop with our week-old baby boy nestled into my shoulder. One of the shop assistants ran over and squealed with delight, “That is the most gorgeous baby I have ever seen in my life!”

I smiled at her but, in my head, I wondered if she would have said that if she knew he had Down syndrome.


I took a thousand photos of him and each one I pondered over, deciding which to post on social media. I deliberated over which photographs didn’t make his “disability” quite so obvious.

As I woke up each morning following the diagnosis, I experienced a sinking feeling in my stomach as I remembered, yet again, our baby was now labeled with a “chromosomal abnormality.” I’d never asked for this to happen to us.

Now, as I wake up each morning, three years on, seeing my son’s beautiful face and hearing that little voice call out, “hello” is the highlight of my day.


Now, I look back at those squishy newborn photographs and see how perfect he was. And still is.

Now, I wonder how we got so lucky.


To my beautiful boy,

I hope you know how lucky we think we are to have you in our lives. I hope you didn’t notice when you were tiny and we spent too much time gazing at your almond-shaped eyes, noticing their difference instead of their beauty, and worrying how Down syndrome would fit into our world.

I hope you always know how loved you are. By us. By your extended family. By your tribe. I hope you forgive us for when we were so caught up in a diagnosis we forgot about the perfect baby right in front of our eyes. I hope you know how often , because we have been rewarded with such an awesome light in our lives.


We are so lucky, buddy. Oh so lucky.

A version of this post originally appeared on the Mummalove Facebook page

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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.

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

Related to Down Syndrome

The Video Every Dad Who Has a Child With Down Syndrome Should See

Dads are just the best. In anticipation of Father’s Day, the Jerome Lejeune Foundation, a research and advocacy group for people with genetic intellectual disabilities, released a video honoring fathers of kids with Down syndrome. The video, called “My Dear Dad,” offers the viewer glimpses into the father-child bond from infancy to adolescence. Shot mainly [...]

These 2 Photos Taught Me Something We All Need to Understand

The other day I was trying to get a picture of the newly mowed lawn (which had previously been a prairie). My son Carter followed me out, so I decided to include him in the picture. “Jump!” I shouted. And so he did. Later that day I was back out with all three kids, and [...]

Teen With Down Syndrome Gets Lady Gaga’s Attention With One Performance

Lady Gaga is great, but our new favorite pop star is Katy Gaga. Katie Dorman is a 17-year-old who has Down syndrome and has been mostly nonverbal since the fifth grade, Dorman’s mother told the “Today” Show. There’s one person who gets Dorman especially excited — Lady Gaga. Dorman, a student at Suffield High School in Connecticut, transforms [...]

Why I Won’t Stop Thinking About My Daughter’s Extra Chromosome

We saw a specialist right after KC came home from the NICU who had a lot of important things to say. But out of everything he told us, only one thing stuck: He told us to mark down the date we go a whole day without thinking of KC’s extra chromosome. He said this would [...]