'We must risk delight:' My daughter's invaluable lessons about life
What does that even mean? I want to believe in it. Does it mean to accept each other for our differences? Can it mean to find happiness in the places we least expect; to search for joy not only in its obvious forms, but from within the obscure and among the outliers, the outcasts? Is joy not a human condition that befalls us all, a state for which we each strive?
Another consideration, when we speak of delighting in other, are we referring to the entirety of the human race, or only to a particular class, ability, gender, skin colour, or subgroup, or only to the people who look and act and think and feel like ?Wait a minute. Do we not all deserve to delight? Happiness, a smile, is universal. I’m not one to question the gifts of the universe or revel in its mysteries. I’ve learned to accept the good when it comes. Even in the most unlikely of places.
When I conceptualize delight, I think of the lines from Jack Gilbert’s poem “A Brief for the DefensePerhaps, if we were to chance happiness , the task would not appear so daunting, so dark.
I used to think of my daughter as a “risk. Having Down syndrome seemed like a risk — a situation involving exposure to danger — to what or to whom, I wasn’t entirely sure, but that’s what I believed when I was pregnant with my second child. My greatest fears materialized and I cursed the high heavens, I raged, and I pouted, and then I stopped caring. Whether I would admit it or not, I had been prepared to parent a typical child, but I hadn’t agreed to take on the risk of a child deemed less desirable by society.
Now I can look back and put words to what those fears were: raising a child with Down syndrome was a risk to my happiness, an unintentional interference with my delight.
Our baby deviated from my perfectly narrow plan. Down syndrome fell outside the scope of the lens through which I viewed the trajectory of my life, and now images that should have appeared far off in the distance were right in front of me, magnified and grotesque, a distorted scene. I was staring into the root of my own ugliness, facing down a shame of superiority. Who do you you are?
But then I didn’t have a choice, I wanted this baby that fluttered ethereal inside me tethered to my heart. I wanted her, she was here, and I would risk delight.
One person’s risk is another one’s happiness.
Happiness in each other is stepping inside on a cold day, and seeing your child with Down syndrome help her little sister remove her boots.
Happiness in each other is celebrating the first words your child with Down syndrome reads independently in a second language. .
Happiness in each other is a well-timed joke that sets your family off in a fit of laughter.
I delight in the beauty of your humanity.
I think what Jack Gilbert was getting at is that without risking delight, our lives can hold no meaning. Without risking delight in , our lives can hold no meaning. People with Down syndrome are labelled as “risks,” and aborted. Without risking delight in individuals with Down syndrome, our lives lack the entirety of the scope of meaning. Without individuals, our lives hold no meaning. Without, lives no meaning.
The great irony, of course, is that it’s the other way around. My children have arrived and taken a great risk on me as their parent. They wear their happiness like a sock in a shoe, typically held in place, but occasionally slipping down to reveal a knobby ankle, a bare sole. I chase after them, trying to capture what arrives within them innately: uncharted delight. Children bring great joy and immense heartache no matter the count of their chromosomes. Perhaps to some it isn’t worth the risk.
But hear my cry, and let it be this. Words I firmly believe, have come to embody. I am a mother, and a parent to a child with Down syndrome — though have no pity, rejoice! For I am a great sufferer of delight.
Adelle Purdham is a writer, teacher, speaker and advocate for those of differing abilities. She lives with her husband and three girls in Georgetown, Ont. Please visit her website, and check out her blog at adellepurdham.ca