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The One Word Response to My Daughter Having Down Syndrome That I'll Never Forget

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A couple of years ago I nursed a lovely old lady. I hadn’t met her before and while helping her wash, we got talking about her family. She told me about her husband, their two grown up sons and how her oldest son was born with Down syndrome.

We talked a bit more and she asked me if I had any children. I told her I had a little girl called Ella who was 2, and that she too has Down’s syndrome.

I’ll never forget her reply. She took my hand, looked at me with a big smile and without hesitation said one word…


I knew exactly what she meant, but I couldn’t even begin to try and define or explain it to you. It comes from a shared experience and an unspoken bond. A complete understanding without the need for words or explanations.

I met her son on several occasions during her stay with us and was inspired by their story. So many children with disabilities born in his generation were hidden away or given up at birth by their parents because that’s what they were told to do. This family had never seen that as an option.

Their eldest son had been loved and raised by them and given the same opportunities as his younger brother. The lady died some time later in hospice, but I still think of her and her family often and wonder how her son is getting on.

I Wish there was some way I could bottle up and sell the magic that is having Ella in our lives so everyone had the opportunity to experience it.

There’d be a disclaimer though… With that magic, comes emotional, physical and mental turmoil on a daily basis. Well, not all the time, but we’ve certainly had a challenging time of late.

She’s pushed me to my limits over the last few weeks, frustrated me with her defiance/reluctance to do things, worried me when she was ill and she’s constantly wanting my attention or supervision. I hear “Mommy” around 243,000 times a day. And night. Our sleep is disrupted and she often ends up in bed with me in the early hours.

When she’s challenging me, it makes me feel I’m not doing enough for her. My overriding fear is that I’m failing her by not spending enough time with her, by going to work, by having to divide my attention between her and her little sister. Both have different needs and expectations of me. And a million and one other reasons too.

And then, in and amongst the frustrations, tears (mostly mine) and chaos come those little moments of magic — an unexpected hug, her smile, a new word, singing “Let it Go” with her sister in the back of the car, trying to ride her scooter…

author's daughter with down syndrome

Or just a selfie with Mommy.

A version of this post originally appeared on A Different View

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Originally published: June 2, 2015
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