How is it possible to look at you and immediately be taken back to those first breaths you took? Or, to think it’s only been a few weeks since you took your first tentative steps? It’s been 8 wonderful years, but I remember each one still so clearly.
When Robert was born, I was given a birth diagnosis of Down syndrome. The hospital staff looked at me with pity. I still remember feeling confused by their reactions. I had volunteered in high school working with youth with disabilities. I actually did some 1:1 volunteer work with a girl with Down syndrome (I wonder how she is? She’d be about 30 years old now..). I had written a paper for grade 10 science on down syndrome, and again another in a university course I took. While I didn’t know much, I do remember thinking it was going to be OK.
I told our social worker that raising a child with down syndrome was going to be like raising a child who is left-handed in a right-handed world. The world isn’t designed for him, but we will adapt, change and do everything necessary to support him.
Never did I imagine when he was born that he’d be learning to play the violin. Or playing math games just for fun. I didn’t think he’d take a shining about learning our solar system or facts on dinosaurs.
I had hoped he’d be included and have friends, but I didn’t realize that he’d have such a solid group of friends who look out for him already.
Through raising Robert, we’ve discovered a community we didn’t know existed. One of parents and allies who understand that it’s the world that needs to be changed, not our children.
I think about how lucky we are to enjoy each stage a little longer, a little deeper and how we appreciate each milestone achieved in a different way. We certainly don’t take for granted that we are part of the lucky few.
So here we are. With an 8-year-old world changer, who is as funny and sweet as he is stubborn and sassy.