“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-old’s at our house often. They ask their parents for refills of water in perfect six-word sentences, they make one too many poop jokes, 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 (because it is one to marvel without full-blown conversations between them) but because the unknowns are more plentiful when parenting a child with special needs.
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.
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 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.
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