What Keeps Me Up at Night: How Do I Meet My Son’s Needs If I Can’t See Them?

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.

If one thought keeps me up some nights, drawing a sting to and then tears from my eyes while I’m lying flat on my back, staring into the dark and then through the dark, it’s not that we lack a diagnosis for my son. It’s that maybe I don’t know him well enough to meet his needs. A good mother would, I’ll find myself thinking. She might not know everything, or be able to meet every need. But she knows enough, does enough, to be enough.

I want to be enough for Tophs. Not by replacing God or his doctors or friends, but in fully being the mother God chose for him, worthy of that calling. I don’t know if my theology’s right here; I just know that this want I have is.

When Tophs was a toddler, two months shy of two years old, I met one of his vital needs without even knowing. He’d awoken that morning in his crib without a sound. For the first time, his deep-set eyes scared me—were they always that large and still?—and his body felt heavy and limp. He fell asleep again during a diaper change on the floor and only woke up to reach for his water bottle. He turned his head away from breakfast. I stifled the doubter inside that asked if I was overreacting or being led by my anxiety, and called the pediatrician.

Lethargic. Racing heart. No food. Only water. No fever.

We can see you at 9:30.

This is where, for me, motherhood divided into Before and After.

*

In the Before, I pumped milk and maneuvered my kids’ double stroller like a pro. I tried to keep Tophs on the growth chart by feeding him good fats. I wrote a column for McSweeney’s about raising toddlers in a college dorm with my professor husband. Before was training for a ten-miler because I was turning thirty and feeling saggy.

After came three days after I crossed the finish line. And the thing about After is that it can stay forever.

In the After, Tophs stared at nothing, or maybe everything, as a nurse drew blood from the crook of his arm during that 9:30 appointment. He didn’t flinch or squirm or whine. They let us go home. They would call in a few hours with results. I didn’t yet know I was in the After, so I carried over routines from Before: I stopped at the Starbucks on Route 29 in Charlottesville for coffee with Tophs slumped over my shoulder. I ordered a morning bun, and he picked his head up off my shoulder and ate half. We drove home, and he continued to sleep.

That afternoon, we rushed Tophs to the ER, because the results had come in and his blood glucose level was 27. A nurse greeted us at the automatic doors, and an entire team began moving around him and watching to see if he’d seize, but he was only groggy and perked up with an IV drip and ice pop. When I told one of the doctors collecting his history that I’d fed Tophs half a pastry on our way home from the pediatrician, she said, “Good mommy!”

What does it mean that I’ll never forget how her praise made me feel like a straight-A student and the arm of God all at once? I met his need. I backed into it through the tired fog of motherhood. I can’t bring myself to imagine what might have happened if I had gotten more sleep the night before, if Starbucks hadn’t been my second home as a young mother.

Tophs was admitted to the University of Virginia hospital that day, and one of his pediatricians called to check on me. “How are you doing?”

“He’s getting dextrose through the IV and looking much better,” I said.

“I mean, mentally, how are you doing? That’s a lot to go through.”

But I was running on adrenaline, so my answer was I am fine, my boy is fine, we are all fine. He would go home the next day, and this would soon be over. No need to invest too much energy in caring for my mental state, because this was no big deal, and this was no big deal because this was almost over.

*

He did go home the next day. But I’ve long since stopped looking for “over.”

My mental state varies. On days when we have school IEP meetings or certain medical appointments, I notice my body begin to slow down, the weight of the world hovering much closer to my ankles than my shoulders. Steps and thoughts can feel laden with more sadness than grit. On other days, when Tophs reads a Bob Book or tells me how many cushions are on each of our sofas when I’ve never bothered to count or hums a classical tune in the parking lot and says, “Music by Georges Bizet,” my steps are lighter; my thoughts are lined with hope.

*

There’s one more thing I should tell you about the Before: One day, as I was walking up the stairs to our dorm apartment at UVA, carrying Tophs in my arms, my soul was flooded with an overwhelming sense that I should actively cherish him—I mean really stay present with him. And that was all.

I felt consuming peace—not worry, not guilt—and considered the moment a nudge from God to keep my eyes and arms open for my boy, whatever that meant.

What followed in the months and years After included, in no particular order: tests for cystic fibrosis, Fragile X syndrome, Russell-Silver syndrome, and growth hormone; bone age X-rays, a chromosomal microarray, echocardiogram, whole exome sequencing, and deletion/duplication gene analysis; speech therapy, occupational therapy, and inguinal hernia surgery; carnitine deficiency, hypoglycemia, acidosis, and elevated enzyme levels; a switch to special education, IEP meetings, and a doctor who reviewed his case and used the term “outlier.”

What followed, too, was the realization that I no longer felt like the arm of God. The arm, scripture says, is never too short to reach someone. I often felt—for all my trying—that I couldn’t quite touch my son; my fingertips met air instead of his warm chest. And here is a line that is neither poetry nor scripture nor medical-chart-worthy: Not knowing if I’m truly connecting with my son has been the most painful experience of my life.

I remember having that Before, in which his small stature wasn’t yet a medical concern—when it meant buying him the smallest New Balances sold at the running store. He wore a size three in the gray 990s, and he looked absolutely dashing in them, even though he hadn’t yet learned to walk. Not walking wasn’t a point of interest yet. Neither was the size of his head nor his sweet and quiet nature nor the fact that he never latched to my breast. These were random points that helped to describe Tophs, but that didn’t require a special file or a team of specialists to review. They were plotted right along with the hilarious faces he made from the time he was weeks old, and the way he came alive for music or went wild for his own reflection in the oven door.

I haven’t forgotten those points. They’re still plotted, and I’m still thankful for that moment on the dorm stairs. That moment, you know, could be perceived as foreboding or eerie now. But I was there, alone with him, and I can tell you, it was most certainly a form of grace.

And perhaps another small grace is the comfort I still find in buying Tophs a morning bun. I pull our gray minivan into the Starbucks drive-thru, and there’s this sense that all will be well. That the cinnamon and sugar will coat his fingers as thoroughly as his lips, and his eyes will be alert, and he will not slip away. His body, brimming with sugar, won’t let him. I can do this one small thing.

*

I don’t know exactly where my expectations of motherhood came from. I hold memories of my own mother, who crushed ice for me with a hammer and pillowcase on the kitchen counter when I was sick and talked me down from panic attacks when I called from my high school’s pay phone. I also have wonderful mom friends who advocate fiercely for their children, know when to push or pull back on swim lessons or soccer leagues, and find every book featuring smart brown-skinned characters when the world outside is commanding their Black children to stand down.

Some of my maternal ideas and actions seem more primal than learned—inherited, even. What if my cells are encoded to help me provide for or save my children? And yet I practice a faith in which I’m encouraged to look to God for provision and saving. This is a tenuous path to walk. On one hand, I pray and release my son’s present and future to Christ; on the other, I feel deep sorrow when I can’t meet his needs and effusive pride when I can. Only God knows if that’s a confession or a sermon.

You won’t, though, find much preaching here. You will find some sharp edges that have frayed, some ideas I’ve had to let evolve. One of these has been expressed by Margaret Combs, author of Hazard, a memoir about growing up with a disabled brother. When asked about her own mother in an interview, Combs said, “The lesson I learned from her was that sometimes the best mothering is to simply be there, to be present, even when you cannot fix the trouble.”

I cannot fix the trouble, not even most of the time. I can be there, most of the time.

*

We have one inviolable rule in our house: Tophs never goes to bed without a snack. This is our best shot at keeping his blood sugar stable overnight. He, of course, has found ways to exploit this and stay up later than he should. He’ll goof off instead of getting his pajamas on, and sometimes I’ll want to put him straight to bed without a yogurt stick or cheddar bunnies, but I can’t. There’s that rule, reinforced by the memory of that morning, three years ago, when he barely woke up.

Last summer, he slipped out of bed just after I’d tucked him in one night to ask for another snack. Standing at the kitchen sink, I groaned, knowing he’d probably had enough to eat but that I’d never forgive myself if he truly was hungry and needed more food. “Get it yourself, Tophs,” I snapped.

He quietly pulled a container of blackberries from the fridge and sat at the kids’ wooden table by the kitchen windows. He sat and ate, without saying a word, without even loudly sucking the berries in through his lips as he sometimes does to amuse his sisters. I’m not sure why, but I stopped washing dishes. I pulled out one of those small, hard chairs and sat next to him.

He looked at me, lips stained purple, eyes like moons, and then turned his gaze outward, to where the sky slowly swallowed the sun and exhaled thin breaths of peach and rose and plum. And I took him in. I drank deeply while he sat perfectly content as strands of sunlight and shadow made one final stretch across our wooden blinds and onto our hands.

I knew everything about Tophs in that moment. Everything I needed to know. He watched and ate until the berries were gone, and then he slipped off to bed as quietly as he’d come.

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