As I was sorting notes for my book on Edward’s life (‘Seeing God through Down Syndrome’), I came across a photo that was taken when he was eighteen (see attached). His older brother, Thomas, had left one of his undergrad papers on our kitchen table—“The Formation and Activity of Multidrug Efflux Pumps in Vibrio Parahaemolyticus”, and Edward, surely thinking that he should be a co-author, decided to write his own title and name beneath Thom’s—“Berenstin (sic) Bears in the Dark, Stan and Jan Brnstin (sic), Edward.”
At first, I laughed. Edward has such a great sense of humour. Then I wondered, “Do you have dreams for your life Edward? Do you want to write? I know your communication skills are limited, but maybe your dreams aren’t. When you see things happening in the world, do you imagine those things for yourself? Getting married? Driving a car? Living independently? Do you dream about things that are beyond your grasp?”
I know I do. It’s the human condition. Saint Augustine once wrote, “You have made us for yourself, O Lord, and our heart is restless until it rests in you.” To be human is to presently live in a ‘not-yet-there’ state. In this place we naturally yearn for more. One of the ways we express our yearnings is through our dreams. Surely Edward dreams. Down syndrome doesn’t diminish this fact.
So now, I wonder what 'dreaming' is like for Edward. For all I know (thinking now about all the Disney movies he loves) he may dream bigger dreams than I—about flying over new worlds, fighting epic battles, and living under the sea. All this compels me (as his caregiver) to ensure he has every opportunity to experience new things. Given the limitations of his agency and power, how else will he soar?
I often wonder what Edward thinks when he is on a plane with us. He always sits in the window seat and during take-off and ascent he’s transfixed—staring out of the window with a focus that feels very familiar to me. Whenever I’m in that seat I’m blown away by the view, “I’m flying! This is amazing! Looking down, I feel omniscient—God-like. The sky's the limit.” As I watch Edward stare, I’m convinced he’s feeling some version of the same thing.
Of course he is. God wants to show Edward the world too. To that end, God's given him a capacity to dream. The more I think about it, the more I realize that I need to give Edward every opportunity I can to experience new things, so that he can live out his dreams.
When Edward was 10, he was invited on a one-day, Make-A-Wish Foundation trip to Disneyland. While our first parenting inclination was to keep him safe at home, of course we said 'yes'. Picking him up at the airport at the end of that day, you could tell that he’d had the most incredible experience. He was changed. This magical 12-hour fairy tale left him more himself.
Of course, this is God’s dream for each of us. A dream, like Edward, we can never self-fulfill. Because when it comes to reaching God, all our grasps are limited. The difference between ours and Edward’s is negligible.
I find this comforting. It frees me from the illusion of ‘just working harder’ and re-orients my yearnings.
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