My son will not play in the NBA; my son will not invent a new vaccine. My son will not design a software program nor manage your finances. My son will not drive a car nor drive a recycling truck.
But my son sang for nearly 4 hours on our drive up north without any music playing other than what was in his head. My son can put an impromptu Luke Bryan medley together faster and more expertly than Luke himself. My son knows the lyrics to well over 100 country songs. My son still jumps in puddles at age 16, finds reasons to laugh over things we’ve long forgotten, and has a joie de vivre that is enigmatically contagious.
My son is also frustratingly slow when he doesn’t want to do something, often coming to an abrupt halt. He will not be bullied, pushed or cajoled. He will do things in his own time; not mine and not yours. My son is hurt deeply when others try to force their timeline or opinions on him; yet he doesn’t hold a grudge against others. He quickly forgives, but he never forgets.
My son has his own opinions, idiosyncrasies, habits and preferences. My son, just like you and me, is fully human in beautifully challengingly ways. That is where we all can meet.
Wil does not have to win a pulitzer prize to prove his worth to this world. In fact, his having a disability gives us the opportunity to be better humans than we are. Wil, in his own way, is a pearl.
Wil was always a pearl; it was my heart that was the sand that needed to be molded and shaped.
Many do not take the time to look within their own hearts to see the sand; and this is required to take the time to understand my son. To understand Down syndrome. Our closed minds are the sand that we must mold over time and experience, and in that we find the pearl of his existence. And the beauty of that journey is we come to value what human life is about. It’s more than achievement. It’s more than habits. It’s about remembering the songs in our hearts before the sand gritted and obscured them.
I don’t want a cure for Down syndrome; I want a cure for a belief system. I want to turn sand into pearls within us. If we can create vaccines and information systems and recycling systems, can we not do this?
One thought on “The Cure”
Most people won’t play in the NBA or invent vaccines, anyway. While I do wish that my sister would have an easier time with some things, I don’t wish for a cure. It would be like turning her into a different person completely.
She knows many song lyrics, too, and she’s willing to sing them at length. She’s also become more of a storyteller in her 20s and she tells herself lots of stories.
A person’s worth isn’t defined by how much money they can make. I hope for a day when everyone understands that.
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