More Mother, Less Detective: Where I’ve Found Grace Without a Diagnosis for My Son

This is What Genes Can’t Tell Us, a monthly column by Taylor Harris on parenting, genetics, and the quest for answers to medical riddles.

I was in the kitchen when I heard my son’s loud and raspy voice coming from the dinner table: “I’m not ready to be a mom!”

I looked at Tophs, sitting with his feet in his chair, as though he might leap onto the table. Then I looked my husband, Paul, as if to say, What in the world? before it all clicked. The kids had recently watched The Star, an animated film about Jesus’s birth. Tophs was imitating the Virgin Mary.

Tophs says these things—often they’re funny, sometimes they’re true, and they always send me on a mental search for the point of origin. He once became angry with Paul in a restaurant and yelled, “You’re not my dad!” He was quoting a line from Annie, starring Quvenzhané Wallis. He used this line again and again during the Annie phase when he didn’t want to go potty or follow other instructions. He’d even add, “I’m not an orphan. I’m a foster kid!”

I don’t know if Tophs relates to young Mary’s angst or if he just liked that particular line from The Star. The timing of his Annie lines, though, tells us he identified with the character’s emotion. Her words became a vessel for his frustration or anger or sense of betrayal. I don’t know if that’s a life hack, but for a child who sometimes struggles to find words, I see it as a win. If he captures a girl’s heart one day by quoting Love and Basketball, I’ll be more than a little proud.

Sometimes his search for a word reminds me of computer coding. Instead of “train,” he might say, “What is that box thing that moves with those other boxes?”—which sounds like a sentence I’d type into a program with brackets and symbols, or describe to Siri in the hope she’d spit out: Are you looking for a train?

But there are times he speaks a truth so profound, so sharp that it almost scares me. Last month, we were out to dinner as a family, and I asked him to switch seats with me. He cried and screamed for thirty minutes. When he finally calmed down, I asked what was wrong.

His voice was quiet and steady. He stared straight ahead over a cooling bowl of pasta. “I’m sad.”

“Why are you sad?”

“My feelings make my feelings hurt.”

In six words, he described the greatest struggle of my adult life.

*

A friend once asked if I thought Tophs was a prophet. He might not eat honey and locusts or preach to strangers in the wilderness, but I wouldn’t count him out. I do know he has another sense—a heightened awareness—that will never show up on a report card or genetic panel. He shares with those closest to him a quiet knowing that needs no diagnosis.

Still, the uncertainty surrounding Tophs’s challenges is painful for me. No other word but sad describes how I felt when the school nurse called one morning to say he hadn’t been tracking in class and appeared distant or sluggish; she’d suspected his blood sugar was low. She gave him a snack, and he was doing fine now. I thought back to that morning at home, when, for a split second, I’d looked at his eyes and thought, “Is that the look? Could his glucose be low or is he just tired?” But he’d eaten breakfast without a problem, gotten dressed, and then was off to school. With Tophs the slogan is not, “Careful, or you’ll miss it.” It’s “Watch all you want, but you still might miss it.” And with parenting in general, you don’t want to be watching so carefully for all the things that could go wrong that you miss the child, miss the being altogether.

I do, then, consciously soak in the moments when he softly kisses my elbow or spreads a blanket over me when I’m lying on the couch before climbing in underneath to snuggle. I will myself to remember these times because, as we all know, pain will also find us and climb in.

I am drawn to pain, I confess. No, I don’t go searching for it, but if our paths cross, if it latches on to me as I’m walking, unaware, I will wrest its legs from around my waist, peel its head off my chest, hold it far away, my elbows locked, my arms straightened, and then pull it back close to my face. I want to know everything about this pain, even if it hurts.

So it’s been with the pain of mystery surrounding Tophs’s life, which is also the pain of liminality; the pain of waiting for answers that might never come. When I write about him, there are no spoiler alerts, because there is no spoiler. Today I don’t know more about the way my son’s body works than I did when I began writing this story. I can show you the lab reports, the specifics of which diseases he doesn’t have, but I can’t tell you if he does have one that science has yet to discover. Our family followed the rules of referrals and appointments, but never found the path that led to diagnosis. We walk through a fog of unknowing.

*

Not knowing happens to all mothers, and to all of us, doesn’t it? If we are breathing, we are without escape from things we can’t know, though I’m not sure to what extent universality softens the blow.

Sometimes I’m surprised by what hurts. The day Tophs’s blood sugar dropped to 27 and he could have slipped into a coma was terrifying. But when I volunteered in his kindergarten classroom this year and his classmate held up a pair of adaptive scissors from the bin and said, “These are Tophs’s!” he effectively punched my chest. I spent the whole day replaying the moment, telling myself, He has small hands. It’s no big deal. But that dent in my chest suggested otherwise: If he needs special scissors, what else will he need, and how will we know, and what if we don’t?

A slow wearing-down hurts, too. When, after going months without a potty accident, he starts to bring home wet clothes from school, one Ziploc bag at a time, the load feels heavy. In the scheme of things, I tell myself, it’s also not a big deal. We can handle wet clothes. But the random recurrence and our lack of understanding, the inability to grasp hold of a root cause—this is what can leave me feeling raw.

The good news is, Tophs doesn’t seem bothered. And maybe that’s a grace—that often he seems unbothered by the very behaviors or tests or quirks that concern us. But is there grace for the rest of us—the mothers, the parents, the families who are still searching?

I think there is. “We are never more in touch with life than when life is painful, never more in touch with hope than we are then, if only the hope of another human presence to be with us and for us,” wrote Frederick Buechner. I don’t want these words to be true, exactly. I want the hope to thwart the pain, to ward it off with all its hopefulness. I want every day to be the day when Jesus bursts forth from the tomb in all his glory, and I want to forget He needed to be resurrected in the first place.

But over the last two years, I’ve come to know a different face of Christ. It’s the Jesus sitting in the wooden chair, shoulders hunched forward, dark hair hanging over his temples, hiding his face. He may be mourning or merely pondering, weeping or simply sighing. He may be turning his world over in his mind with all the purpose and struggle of an infant rolling from her back to her side. He who healed the blind has never let brokenness go unseen. This Jesus. He is the one I might have missed had there been no pain.

*

On a cassette tape of my 1983 birth, my mom can be heard asking the doctor, “Is she okay? Is everything all right?” I’m wailing in the background. Yes, the doctor assures her. With lungs like that, I am just fine.

When Tophs was born, I didn’t have to ask. My OB/GYN handed him over to be wiped clean and said, “He’s a little blue, but fine.” A true peanut, weighing just under six pounds, he cried and breathed on his own. He was fine.

There are still times when I want to find fault with myself. If this one child is bookended by two baby girls who are petite but healthy and not falling off the growth chart, then maybe I’m the cause. Maybe it’s a medicine I took, or some feedings I missed, or the time he fell, or—and on and on.

But playing detective never gets me far. I feel empowered, for all of two minutes, as I try to crack the code, examining every memory and possible mistake, following a hare-brained map that always leads back to a place of deprivation or defeat. While this is sometimes my reality, it’s not fruitful. And while I’d have empathy for any mom searching in the same way, I would never advise her to take that journey over and over.

Two years ago, I would have stayed there, running mental loops around that shoddy circuit that always shorts. Now, if I fall into the rut, I can step out. More importantly, I believe I should step out. I don’t have to figure out everything. I don’t have to wake at night in a panic to ask God, “What happened?” and “Is he gonna be okay?” I have to keep watch on his blood sugar and IEPs, yes, but mine is not the sort of round-the-clock, through-the-years mental vigilance I once thought I’d have to practice. I can be more mother, less detective. More “I love you,” and less “Let’s get to the bottom of this.” That freedom, that latitude is a gift.

“Sometimes in the way the breeze stirs the palms or the way a bird circles over my head, I recognize that even in the valley of the shadow of my own tangled thoughts there is something holy and unutterable seeking to restore my soul,” Buechner wrote. That bears witness with my soul—the breeze or the bird often visiting me through an incredible word or touch from my son.

We are packed into the minivan one day when Tophs calls from the backseat to his dad. “Is there something you wanna tell me, PAUL?” He’s been testing his boundaries lately.

“I love you,” Paul says.

“The honor is mine,” Tophs replies, a line he’s picked up from The Greatest Showman.

No, sweet boy. The honor is all ours.

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