What We Carry as Parents of Kids With Disabilities
We carry it.
The weight that comes with being the parents of a child with a disability. That does not mean we don’t love our kids fiercely. We do. In fact, we love them ferociously.
And we carry it.
The willingness to fight for them at any moment. At all costs.
We carry it.
The constant and endless advocacy.
We carry the words.
The words so casually and caustically flung in movies, music, on tv, at parties, during casual conversion, by friends and actors and acquaintances and musicians. Words like “idiot.” “Moron.” “Remedial.” “Stupid.” The R-word. Words designed to describe people and situations and animals as less than. Words used to demean and devalue. We carry those words and we throw them away, again and again, so our children will not hear them.
We carry education.
Everywhere we go. We talk about why these words are inappropriate, why they hurt. Why they’re cruel.
We carry explanations.
That our kids are more alike than different; that we’re all people. And we’re all a little different too, we explain, and those differences make the world go round, so we celebrate them. Because wouldn’t life be boring if we were all the same? We say this over and over. To kids and parents and teachers and doctors. To people closest to, and farthest away from, us. Like a refrain.
We carry expectations.
Expect greatness, we say. Presume competence, we yell. See the ability, we sing. Just because they can’t talk yet does not mean they don’t understand, we shout. Include them, we pray.
We carry them.
Because they do get tired, our kids. They work so hard, harder than many people ever will, to do the things that come so easily for most. And they never give up. And much as we shoulder, they feel some of that weight.
We carry it, we carry it all.
But really, our kids carry us, by showing us every single day what grit and grace and perseverance look like. By breaking barriers. By being completely true to who they are.
We carry it — and we carry them — with endless love. With complete resolve. But our kids — they also carry us.