Kathryn Butler

I stood in a rock climbing gym churning with kids, and with tears in my eyes I thanked God. Around me, a sea of forty screaming campers who cared more about roughhousing than climbing clambered over rock walls and slammed onto mats. The techno music, usually a source of rhythm and focus for a climber, heightened the cacophony. And as a staff member perched on a ladder to bolt new holds into a wall, his drill growled like an agitated animal. Even the other staff, tense and overwhelmed from the chaos and noise, exchanged desperate glances.

And then there was Pip. Pip, who’s required headphones to tolerate a church choir, and has melted down from the sound of a vacuum. Pip, who six months ago couldn’t focus or hear instructions in an otherwise silent gym if staff started drilling. There in the tempest, like a beacon urging the calamity into stillness, he ascended to the top of a wall. While other kids hollered and stumbled, he navigated toward the next crimp. While the beat of the next song thudded through the room, he focused on placing his hands just so. When he reached the top, he searched the crowd for my face. “I did it, Mum!” he cried when our eyes locked.

And there it was. In that one moment, an answered prayer. I held onto it, as if it were a luminous dream I didn’t dare let slip into the dawn. The next day, Pip would struggle again. The sun would irritate him. Clothes would feel too abrasive. His nervous system, too jumbled to untangle the messages from his own senses, would pitch him into insecurity, and he would crash into furniture again to feel grounded. But for that one moment, God answered the prayer that for months had opened and closed my days:

Lord, please help Pip glean joy from life.

Parents of special needs kids often describe stages that mirror grief. We cycle through phases of denial and anger. We muster resolve to overcome all the obstacles, then crumble in dejection when the therapies and the evaluations don’t eradicate our little ones’ struggles. Ultimately we reach acceptance, but the path there is long, arduous, and humbling. As our understanding evolves, so, too, do our prayers.

After Pip’s initial evaluation, hard-set determination steered my days. Drawing from my surgeon’s focus and resolve, I read every book, looked up every study, researched every therapeutic avenue. Surgery attracted me as a career because of its potential for definitive cure, the instant gratification of a cancer removed or a bleeding vessel sewn closed. I tackled Pip’s sensory differences with familiar, clinical tenacity. We would fix this. We would make this work.

But I couldn’t fix it. No matter how many studies I read, none offered a magic cure to reconfigure my little boy’s neurons such that he could tolerate the world. There were therapies that “might” help, but had scant supporting data. There were sensory diets and brushing, heavy work and vestibular input, all which banked on the neuroplasticity of Pip’s young brain to have an effect. And they did have an effect. But not of the titratable, measurable, quantifiable type I craved. I yearned for a dose-response effect I could anticipate and fine-tune. Instead, it’s been a lot of trial and error, turbulent emotions, and fervent prayer.

As I have found so frequently over the years, my surgeon’s tenacity derives more assurance from the powers of my own meager hands, than from the wisdom and sovereignty of the One who fashioned them in the first place. And my self-righteousness has proven just as foolhardy when supporting my son through a grocery store trip, as it did when a patient’s unexpected tumor recurrence or a pocket of infection would glare at me from a CT scan. We can nurture our children as budding shoots, and help direct them toward the sunlight. We can prune them to speed growth. But to presume we can precisely control and orchestrate their trajectories, as if their personalities, proclivities, and challenges were variables in an equation, ignores that the kids with whom God entrusts us are ultimately not our own. We are to shepherd them. We are to love them. We are to guide them along the way through this fractured, tumultuous world as best as we can. But they are His. Their traipse through life depends more on His goodness and His will, than on our own design.

And so over time, my prayers have changed. While I once prayed with fists tightly clasped, “Lord, help us overcome this,” my palms have relaxed. I realize the goal of “normal,” as the world would envision it, may not be possible. With open hands, I now thank God for giving us an amazing, brilliant, funny, clever, sensitive, loving boy who experiences His Creation uniquely. I ask the Lord, in His mercy, that in the midst of that uniqueness, Pip might glean joy. That even if it’s hard, he might blossom into the person God created him to be. That even if his path looks different, he might find joy from life, and from the Lord, and follow Him with a full heart.

And as He always does, because His steadfast love endures forever, the Lord answers. Up on that wall, the joy beamed from Pip’s face like a ray of light slicing the dark. He’d experienced the potential God had instilled in him as His image bearer. He’d gleaned joy from life when all circumstances seemed poised to steal it from him.

Great is Thy faithfulness. Morning by morning, new mercies I see.