‘Will my brother ever talk?’: Mom to son with Down syndrome shares embracing ‘the unknowns’

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“‘Will my brother ever talk?’ My daughter asked my husband.

It was an innocent and valid question.

Her brother is four-years-old and has Down syndrome.

We have other four-year-olds at our house often.

They ask their parents for refills of water in perfect six-word sentences, they make one too many poop jokes, and they tattle on their younger siblings.

She’s seeing the difference.

‘He’s talking, baby. His speech will get better because he’s working so hard,’ my husband told her.

She was satisfied and moved on.

I was taken aback and sunk below.

It’s moments like these that hit me in the gut.

No matter how far I’ve come in my understanding of disability, no matter how much I believe my son’s extra chromosome is an integral part of who he is…

I can’t stop my eyes from filling with water when the struggles are spoken so clearly.

Especially by other children.

It makes me fall back into grief, not because of what could have been like I once felt, not because I worry about their relationship but because the unknowns are more plentiful when parenting a child with disabilities.

Because I don’t know when he will talk.

I don’t know when he will be able to dress himself.

I don’t know when he will make real friends on his own.

I don’t know.

But what I do know is this—he asks for a refill with two words, he laughs at the poop jokes the other four-year-old’s make, and makes us laugh with his own funny sense of humor.

He also points out his younger brother’s indiscretions with vigor.

I know, he is not suffering from his differences even when his differences are sometimes hard for his sister to understand and his parents to see.

He speaks in his own way, one day it will be with more words.

Today, we have to listen more intently.

Today, we embrace his uniqueness while giving him every opportunity to advance.

Today, we admit the hard and we move on, as his sister did.

Because he certainly isn’t going to stand still.

That’s what we do as parents of kids with disabilities.

We have moments, maybe even stretches of sadness when fear comes, and then we keep going.

We keep moving.

We keep brushing off the path in front of our kids until they can clear it on their own.

We cheer with each of their steps, no matter how small.

We move on.”

little girl and her brother playing in a field
Courtesy of Jillian Benfield

This story was submitted to Love What Matters by Jillian Benfield. Get her free e-book here. You can find her writing at JillianBenfield.comFacebookand Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Jillian:

‘I carry him. I know it looks silly. His toes dangle past my knees. But still, I carry his awkwardly long body against my own.’: Special needs mom says ‘he carries me, too’

‘The doctor called…the blood screen came back, it’s not good.’ My heavy 22-week pregnant body fell to the floor. It’s normally at this point people want to talk about their options.’

‘My disabled child is not an ‘angel.’ He is not ‘celestial’ or ‘heavenly.’ He’s just like you, fully human.’: Down syndrome mom claims son ‘wasn’t sent here to teach you or me something’

‘We don’t get to hear how our child’s day went. We worry parents haven’t taught their kids about differences before they enter the classroom doors.’: Special needs mom shares candid reality of school drop-off day

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