I’m jolted from sleep when the heat-seeking-body-missile of my 24-year-old son lands next to me on the bed. I pry open sleep-encrusted eyes to encounter Joel’s face, two inches from my own. He grins, giving me an up-close view of his smile crinkles, just like his dad’s; little fans on either side of his baby blues.
“Zoo today!” he crows. “Zoo, zoo, zoo, Cincinnati zoo, zoo, zoo!” Like many children diagnosed with an intellectual disability, and later with autism, Joel could sing before he could talk. My ears ring with his loud rendition of the old advertising jingle.
Over the past twenty-four years we have spent hundreds, if not thousands of hours at the Cincinnati Zoo. Joel’s brothers, Matt and Justin, now in their thirties, enjoyed the zoo as children, too, but they were satisfied with twice-yearly visits. Joel? Once a week suits his style.
For Emily Perl Kingsley, raising a child with a disability was like having a long-planned trip to Italy changed, mid-route, to a trip to Holland. For our family, living with autism has been a lot like a lifetime of weekly trips to the Cincinnati Zoo.
First of all, there are all those hills. Those interminable hills. Pushing Joel’s stroller up the hills, then chasing Matt and Justin down the hills, all the while trying not to lose control of the stroller. Sort of like all those years of doctor visits and therapy appointments and IEP meetings. It seemed I was always trudging up hill, exhausted, yet working hard to keep my other two boys in sight, in hearing distance, in hug distance, in homework distance; often asking them to help push the stroller, to slow down, to hold my hand.
But the sun often shines at the zoo as well as in our family life. There are many days when everything is bright and shiny, greener than green. Days when tulips wave in the breeze, carpets of yellow and orange and red. Days when the beauty and perfection of our family life are enough to take my breath away. Days when a picnic on a zoo bench with sticky peanut butter sandwiches and boxes of apple juice are more than enough to make me happy – a taste of heaven itself.
But let’s get real. There are rainy days, too. Days when we walk the zoo hills through a downpour, with Joel fighting the umbrella and the raincoat hood; when he insists on walking uncovered, face turned up, raindrops dripping from his hair, chin, and nose. Days when his stubbornness and willfulness and perseveration are more than his father or I can handle; when every one of us ends up wet and miserable. Days I get through by gritting my teeth and moving forward, toweling my wet hair at the end of a long day.
And then there’s the zoo train. Joel loves the predictability of the train. To me and my husband and Joel’s big brothers, it’s just the same old scenery whizzing by as we ride ’round in circles. Where’s the excitement, I wonder? Where’s the life my husband and I dreamed about when the boys were young? What happened to the educational trips to Washington, D.C., Gettysburg; the oohs and aahs while standing on the rim of the Grand Canyon? What happened to moving to Tennessee or North Carolina, and building a cabin on a mountainside? How did we get on this train that goes round and round the same old track, day after day after day? And then there’s that sign, just as the train leaves the station – “No Exit Beyond This Point.”
Tell me about it!
And yet, there are those days when time stands still – when we make the transition from chronos time to kairos time – from the clock to God’s time. Days when Joel and his dad stand staring at Gibbon Island, fascinated by the antics of the Siamang gibbons, taking turns imitating their siren calls and mad-monkey-whoops. Days when Joel and I come to a dead stop in the Bird House, heads thrown back, mouths open, amazed at the magnificent, colorful, noisy variety of God’s creation. Days when we sit together on the bench in Manatee Springs, mesmerized by the slow and graceful movements of those lumbering giants of the deep. This is one of the greatest gifts Joel has given us – the ability to transcend time and space and the need to “do;” to simply let go and “be” in the glories of nature.
“Time to get up! Get up! Zoo today!” Joel nudges me none-too-gently toward the edge of the bed.
It’s one of those days when the sun is playing hide-and-seek in the clouds. Will it rain? Will the sun come out?
That’s the adventure of a day at the zoo. There are no guarantees when it comes to the weather, just as there are no guarantees of what a day will hold when it comes to living with autism. But there is God’s magnificent, varied Kingdom. There are multi-colored flowers. And there is love.
There is always love.
Thanks to the zoo, and thanks to those hills, our legs are stronger now. And thanks to Joel, our spirits are bigger now. As the poet Kahlil Gibran puts it, “Your joy is your sorrow unmasked…the deeper the sorrow carves into your being, the more joy you can contain.”
Because of Joel, because of living with autism, we have lots more room for joy today.
I’m up now, stretching my middle-aged feet in anticipation of a long walk around the zoo. Joel grins at me from the other side of the bed. His smile crinkles beckon me into the new day. There’s an adventure to be had.
Hurry! Hurry! There’s no time to lose. Gibbon Island is waiting, and if we’re lucky, the Siamangs will be making a royal ruckus.
Kathleen Deyer Bolduc