Choosing Joy

 

Happy, happy birthday to our dear Jukie! Although it feels impossible to believe, today we celebrate the 21st anniversary of his birth. Wasn’t it just yesterday that Jukie was spinning endlessly on the tire swing in our back yard, running with abandon across the expanse of a neighborhood park, standing on his head against the wall while giggling, and running around our rooftop at midnight (while also laughing his head off)? Ah, the memories.

No one really teaches parents how to transition through different stages of parenthood as their children grow. We discover and navigate our way through each age, learning to adjust our parenting strategies as we go. Just as one can’t ever feel quite ready to become a parent, I think we’re often not quite ready to see our kids’ childhoods end. No one tells parents how wistful they will feel when they recall hearing their kids’ young voices or holding their little hands. At the same time, nothing prepares a parent for the thrill of seeing their young adult child launch and thrive on their own.

Parenting a child with profound autism sometimes makes Andy and me feel as if we exist on a different planet from the rest of the world, a planet where everything is heightened. Parents like us fear for our children’s future, knowing they will not launch as their siblings will. We sometimes feel guilt, wondering if we are doing enough to help our kids reach their potential. We also take pride in even the smallest of accomplishments, as we know that reaching each goal took tremendous tenacity and effort. And sometimes we feel isolated, wondering if we have any idea what we’re doing. If we’re lucky, we have friends who also live in this alternate world, who know and understand. 

For autism parents, birthdays can bring up a sense of ambivalence: we are reminded of all that our child will never experience, and thus we grieve for the dreams we had for our children. I don’t know what the future holds for my son Jukie. And this sense of the unknown terrifies me. And while all of those conflicting feelings leading up to my son’s birthdays are normal and expected, on the anniversary of Jukie’s birth, I protect our tenuous hold on optimism and forward momentum by choosing to focus on joy. Jukie is joy.

Zen Jukie lives in the moment, and he trusts in the world around him. He doles out pure love in high fives, laughter, and hugs, and expects and receives all of that right back. He trusts and accepts others and complies with most of what he is asked to do. He believes in sharing and being shared with, such as by snagging the lime from my drink the moment I turn my head. Sharing his big and often unexpected smile, Jukie busts out laughing when nothing seems funny, and we can’t help joining him in his infectious joy. 

And today, the occasion of his 21st birthday, our boy Jukie won’t quite understand the reason for the cake, the gifts, or the extra kisses. He won’t know the significance of this milestone birthday. But Jukie will feel our love, our attention, and our focus. He will know that we treasure and adore him. And we will feel so grateful, and so joyful, for having Jukie in our lives.