This guest post is one in a series I run every so often called Perfectly Human. These essays provide a picture of life with a disability in all its possibilities and limitations, gifts and struggles.
We were standing on the steps outside the “wibrary,” which is her favorite place.
If she could, my daughter would spend hours at our local library just plowing through the books, immersed in the pictures.
The two of us must have made a rather strange sight this day: we were practicing the week’s assignment from Sam’s physical therapist.
“Find any one-foot step and practice jumping off of it,” the therapist had said.
So there we were, Sam braced rather perilously on the last and final step and her mother on the pavement in front of her, holding Sam’s hands and coaxing her to jump.
If Sam at three-and-a-half could still not do what most children by the age of two could do with little thought– jump carelessly off higher landings than this with little appreciation for the delicate and sophisticated neuromuscular chain of events that must happen for even this most basic motor movement to occur– Sam didn’t seem to mind.
But I did. Maybe we mothers are just hard-wired to worry.
When Sam was 17 months and still had yet even to crawl, not to mention walk or run the way other kids her age were doing with ease, I had finally heeded my intuition that something was wrong and taken her to a physical therapist. At the time Sam would happily scoot on her behind anywhere and everywhere with little concern for a developmental index that put her near the bottom of a bell curve and gestured to some underlying condition.
In the days and weeks to come, we would do tests and more tests; Sam would work with a physical therapist to learn how to walk; and, when Sam finally did walk, her first steps elicited great celebration. (There had been a time when even walking was not a guarantee.) In due time, we would discover Sam also needed speech therapy and occupational therapy even as her condition would remain a medical mystery. The closest we had gotten to a diagnosis was one neurologist’s scary catch-all term for anything that did not yet have a name: “cerebral palsy,” she had said to me matter-of-factly in the examining room, as if she were remarking on the day’s weather.
Time seemed to stand still in that moment.
But now we were standing on the bottom step of the library and my daughter’s brain could not tell her to jump, despite her efforts and my increasingly more frantic efforts to make her. And the more frustrated Sam could sense I was becoming, the more unwilling she was to consider this enterprise fun or worth her time. With each failed attempt to lift both her legs off the ground and jump up and forward, her left foot would fall limply on the ground and Sam would grin with the satisfaction of one who had done her best and followed the instructions, only to look into a mother’s face registering a mix of anxiety and discouragement.
Why, afterall, in a world of one God and one God alone, would we want to be anything but simply and perfectly human?
My daughter is perfectly human not because she can jump gracefully off a one-foot step. Or pronounce her sentences correctly. Or poop in the potty rather than still in her pull-up (to her parents’ great vexation).
My daughter is perfectly human not because she was made in my own image or succeeds in filling all my own ridiculously high bars for “success.” Beauty. Smarts. Physical grace. Moral goodness. My internal list, I am discovering, is immensely long and impossible to fill for any human being.
Sam is perfectly human, because she was made in God’s image, and because she is being who God made her to be: a happy, carefree, beautiful little girl with a deep compassion for others and a capacity to love that calls others out of themselves.
Catholic theologian Hans Urs Von Balthasar has said “perfection consists in fullness of [life’s] journey;” and for this reason, none of us must ever think we have “arrived.” Each day with Sam reminds me I have a long way to go in becoming who God wants me to be. This reality need not be a burden (though I may at times make it so); it can be the very space in which to discover the event of God’s grace. If my journey seems incomplete, it is only because the fullness of a life well-lived still beckons me each and every day, each and every moment even. Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. These “fruit of the Spirit” that will overflow out of a life fully lived so often elude me as I seek to be who God made me as Sam’s mother; but when they do, they call me back to the journey itself, as reminders of sorts that I have a long way to go.
The other day a friend remarked, “Every child is a special needs child.”
I agreed, then added, chuckling, “And every adult is a special needs adult, too.”
Sam’s “special needs” have made me painfully more aware of my own. And, if the road ahead is long, it is so because God’s love is longer–and deeper and wider–than our own little heads and hearts could ever imagine or comprehend. If the journey is incomplete, it is so because there is so much fullness to be had. To “arrive” would be to stop learning- maybe even to stop truly loving. In this sense, I hope the journey never ends.
Kristina Robb-Dover is a writer and minister: when she is not chasing after or chauffeuring her kids, she is working as a corporate chaplain, and you can find her regularly blogging at the intersection between life and God at http://blog.beliefnet.com/fellowshipofsaintsandsinners; she is the author of the forthcoming book, Grace Sticks: The Bumper Sticker Gospel for Restless Souls (Cascade).